Forgetful Girl

I'm Embarrassed By the Fact I Wasn't Embarrassed.

2011-11-27T20:22:00.001Z

You know you suffer from chronic pain when you cry in public and don't give a monkey's ass about it. The good thing was it happened in a restaurant and I was sitting in the corner, so people could only see two sides of me. The bad thing was I wore mascara KNOWING I FELT LIKE BURSTING OUT CRYING AT ANY GIVEN MOMENT. Why did I not listen to the all knowing inner voice and wear waterproof mascara?

--Because I don't give one, that's why. At least I bothered to wear mascara.

I've been having major flare up for the past 2 weeks and have only left the house about 3 times. My mum and dad wanted to go out for tea, and I didn't feel up to it- but knew that if I said I didn't want to go they would not go either and that would embarress me so I went with them, and ended up crying. I asked them to drive me back home and go back out, but they wouldn't do it. Not out of being mean, but because they thought I would feel better if I had something to eat. I felt trapped. I couldn't get home since I cannot drive. I had taken my pain meds, but they hadn;t kicked in. I just had to somehow sit there and relax.

I ended up crying. Not the bawling kind; the uncontrollable tears without any noise. My eyes were just leaking and I couldn't do a thing about it. Pain was getting the better of me.

I hate feeling like the pain is winning. When that happens, the depression kicks in. I start to feel worthless. I start comparing myself to others. I focus on what I cannot do. Bascially, I do everything I've been told not to do. I think that it would be better to just somehow end it all. That would make it better, easier, simpler.

But, I do know that is how I'm feeling now, and it's okay. It feels horrible, but it's okay. That dark cloud hovering over me will turn into a light and fluffy one soon.

A FG Guarantee

2011-10-10T22:52:00.001+01:00

By the time you read this, I will be hopefully flying back home after a much deserved 'proper' holiday (planes! foreign currency! passports! immigration interrogation!). Before I went away, I did a lot of research; not only on the holiday destination, but also on travelling with fibromyalgia and CFS.

Amongst the great tips, advice and trip reports that gave me a bit mire confidence, I came across a few websites that were less comforting. Some were forum posts debating the condition, some were posts on how these conditions don't exist and some were arguing whether someone with a chronic condition should travel. But surprisingly, another type of post annoyed me the most:

Ones that offered a cure.

"take that vitamin" "wear these magnetic insoles/ bracelets/hats" "drink this herbal drink" "follow this specific diet" "take this powder made of the bones of a unicorn and you will be cured!"

Now, I have no problem in people wanting to share how they got better. I'm annoyed that they make it out to be The Cure. Building false hope to others. Giving unsolicited advice on how to make things all better.

Which is why I am making a promise: I won't post any cures, any magic potions or special diets. I'll write about what works for me, and me only. We're all different, what works for one person probably won't cure another but does perhaps give that person a chance to not kill a unicorn.

To My Quite Sick Self

2011-08-31T20:26:00.001+01:00

Dear Pre-Forgetful Girl,

You probably don't feel like reading right now. Actually, you probably feel like crawling into a very, very quiet and dark cave and sleeping for a thousand years and hope that when you awake you'll emerge from that cave all shiny and new and better.

I can tell you that isn't going to happen. No matter how much you'll spend the next few weeks sleeping, you won't get better. You won't be going back to university just yet. Yes, you'll have to leave university twice. Other people with glandular fever will recover, will get over and get back to their life. You won't. You'll spend the next few months feeling like a zombie. Luckily, you won't remember those painful months. You won't remember being forced out of bed to go downstairs and nap on the sofa. You won't remember being told to eat. You won't remember the times your mum had to feed you, or help you brush your teeth and wash your hair. Over the next few months you will smell. Showering will be an effort. A marathon, even. You won't leave the house, except for going to the doctors and the odd car ride with your parents. You won't be able to talk. Your throat will feel as if your tonsils have been replaced with razorblades. You'll feel heavy painful pressure where your glands are. Did I mention you will just sleep all the time?

Did I mention you'll barely remember this?

Two years filled with fatigue and pain will pass. Two years is a long time. In those two years you'll get a diagnosis that makes sense to you, but not to some family and friends. You'll lose some friends, but you'll appreciate the friendships that somehow become stronger, even though you feel weaker. You will feel stronger. You'll be able to read a book. but may not be able to remember it when you finish the last page. Strong enough to go back to university. You will be told to leave, but you'll come back the following year not only stronger, but more able. You'll get support at university. You'll get another diagnosis, but you'll be in more pain.

You will graduate. You will start to learn to drive. You may not be your old self. You may not have recovered, but you will learn to adapt. You may never be 'post Forgetful Girl'.

Did I mention you will graduate?

Love,

Forgetful Girl

What's New With You?

2011-01-28T16:23:00.000Z

What's new with me?

I've got a new walking stick (it's silver and black)
I have one semester left at university
I'm starting to panic about what I'll do after university
I discovered Gavin and Stacy and fell in love with it
I can make pasta from scratch
I'm fed up with writing essays
I'm taking a long, long break from blogging
I'm on Twitter

I'll be back blogging in May once university is all finished with.

I don't spend that much time online, and I'm avoiding Facebook as the games are addictive. I do not have the willpower to stop myself playing Farmville, or Cityville. I am on Twitter, so if you want 2 in the morning updates about me watching SATC or a student rambling on, then do follow me! Who else is on Twitter?

What's new with you?

The Future

2010-11-11T17:10:00.000Z

I was watching The Pride of Britain awards last night and ended up crying over one particular story. Dr Allison John was diagnosed with Cystic Fibrosis when she was only weeks old. She became the first person in Britain to have all her major organs transplanted. She overcame all her health problems and became a doctor. A doctor! So much hard work for anyone, but perhaps even more so for someone who has gone through what she has.

I was watching her story and just felt pathetic. I was in pain last night (a fibro flare? I'm not sure yet) so was feeling a tad over-emotional anyway, but her story just made me feel like I complain about something so little compared to what she has gone through, and overcome. Such a brave and determined woman, and an inspiration to everyone.

And I'm comparing myself to her. Luckily, I had my mum in the room who noticed I was upset and quickly shouted at me for comparing myself to someone else. Ok, she didn't shout at me (that would be mean), but she did knock some sense into me. Dr Allison John has had to deal with health problems all her life, it's probably all she knows, my mum said to me. While I've had to leave my old life behind and start a new one. I'm still grieving for my old life, while trying to live my new life. I'm always hoping that one day I will wake up as my 'old' self and just jump out of bed!

I'm also panicing a bit because I graduate next year and I have no idea what to do after I leave university. I did have a career in mind before I got ill, but I've had to put that on the back burner for the meantime. Now, I'm thinking who will want to employ me? Who will be understanding? Will I be confident enough to go to a interview? Will I speak sense, or will I not only confuse myself, but the person interviewing me due to mind fog?

I need to learn to live in the now. Not compare myself to others. And stop worrying.

Remember Them

2010-11-11T15:37:00.005Z

"They went with songs to the battle, they were young.
Straight of limb, true of eyes, steady and aglow.
They were staunch to the end against odds uncounted,
They fell with their faces to the foe.
They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning,

We will remember them."

For the Fallen, Laurence Binyon

Remember them, and show your support: visit the Royal British Legion

Nothing to See Here, Please Move Along

2010-10-23T17:24:00.000+01:00

I told you to move along. Consider yourself warned. This is an unhappy post I wrote last night. As usual, I wonder if posting these thoughts is a good idea as I want to be positive. But, life is a struggle and I like to be honest. After all, life with a chronic illness isn't always full of unicorns skating over rainbows.

I'm feeling sorry for myself. Something I don't do that often these days, but still have days of feeling low fed up. Like a black cloud hanging over me. Heard that metaphor before? That's because it's a good one. It describes exactly how I'm feeling. I suppose it is depression, but if I tell myself I'm depressed then I tell myself I'm an idiot and then that doesn't help as I then feel stupid as well as sad.

I tell myself I'm sad because that's how it feels. I'm sad. Unhappy. Lost.

The pain has been quite bad this week, and that makes me feel fed up with life. It makes me feel like giving up. On losing hope. On not bothering with life because what's the point? I sometimes think it's harder to be ~~ill~~ living with a chronic condition when you're young because people expect you to be full of beans, of life, of expectations. But what life will I be able to lead, being stuck in the house in pain, feeling tired?

-------
I'm out of the loop, and behind on my blog reading. I've been away far too long. It's been a busy few weeks getting back into the routine of university. Bear with me, I'll be blogging regularly (and commenting on other blogs) again soon enough!

This is Not a Survival Guide to medicine

2010-09-24T19:25:00.000+01:00

©Matt Groening

This, is in fact, a 'What Not To Do' guide in regards to medication. That's right, FG makes mistakes so you don't have to!

I take one particular medicine in the morning, and then take a SSRI in the evening to help with CFS and Fibromyalgia symptoms. This morning, in my wake up daze, I took the wrong one. I took the SSRI, at 9am. Now, there is no problem with taking it in the morning, I know some people do take it then. It works better for me to take it at night as it makes me really drowsy. So, today has been fun. Luckily, I haven't had much to do today, apart from visit the doctor. At around 11am I felt really tired and had to have a nap. It was a nice nap.

In the afternoon, I decided to play a game to stay awake. A brillient game. The Beatles Rock Band.... big mistake. Take a look at this video and you will see why:

I felt like I was high.

Unsolicited Health Update
The new medication the doctor has given me is called Pregabalin (also known as Lyrica). He thought it was quite funny that one of the major side effects is fatigue. Wonderful. He said hopefully I'll be able to take it (some people can't tolerate it) as it's really good as easing pain. I'll be starting it tomorrow. Is there anything I should be aware of? Wary of?

Becoming an Expert Patient

2010-09-20T18:29:00.000+01:00

I've been on the Expert Patient Programme for 4 weeks now. It's a course run by the NHS to help people with long-term conditions learn to manage and live with their conditions. Each programme is tutored by people who are living with a chronic conditon so they know exactly what I'm going through. The bad thing about it is I am the youngest person in the group. This group has 8 people who are all over 50 years old. They are a lovely bunch of people who are friendly, funny and amazing. One woman has had cancer, while one man has just lost his wife to cancer and is living with diabetes.

The people in the group are not the problem. It's the ages. They can only help me so much, and I can only help them so much. They all have children, jobs, some have even retired. I'm still living with my parents, I am at university and I'm in my 20s. I need to be with people my own age, going through the same things I am going through. Some of the older men and women tend to talk a lot about their health problems, and understandably so. It's just a little frustrating when they're talking for 15 minutes (I timed it!) about their blood tests, what their doctor said and what their next door neighbour thinks she should do. I think some of the people in the group don't have anyone to talk. That's why the Expert Patient Programme is good, and so important. It stops people feeling isolated. It's just, I feel more isolated by going in some ways.The people in the group don't understand how hard uni can be. I do not know anyone my age with a long term condition, and apparently there is no Expert Patient Programme in my area for people my age. It would be a great help to just talk to people my age who just understand.

Health Update
I haven't really been leaving the house much due to pain which is very frustating. I got a phone call from my doctor's surgery. My doctor wanted me to make an appointment to talk about a new medication he thinks I should go on. I don't know what it is, or what it is for. Could it be for fibromyalgia? When I was diagnosed I was told there are a few medications that are available to help with it, but are not licenced in this country. Perhaps this is just a way for the doctor to get me to go and see him since it has been a few months since I've been (haven't seen the point in going when he can't really help) and he wants to see how I am going. I wonder what he thinks about me being diagnosed with Fibromyalgia. Perhaps he has been doing a bit of research!

"For god's sake love, it's only a child."

2010-09-12T18:50:00.001+01:00

Excuse me while I rant.

He may have only been a child, but he was somehow capable of shrieking at a level that made my ears want to bleed or stop working due to the shock of the noise that came out of your child's mouth.
Perhaps I should explain, otherwise I sound like some sort of crazy person.

After a lovely afternoon out with my parents we walked in a park. We walked past two children playing with a ball. Suddenly, one of the kids ran off with the ball leaving the other kid (who I think was a toddler) upset. He started to shriek. Not cry, not shout but shriek. At a very high pitch. I understand that he's at an age in which he can't explain why he's upset or why he can't just shout for the ball back. I covered one of my ears because after the second shriek my ears hurt. It was painful to hear that noise and I am going to protect myself from hearing it again.
The mother of the little boy stared at me and as we passed each other said "for god's sake love, it's only a child". Not to my face but just as we passed each other. Yeah, perhaps I was a tad dramatic with my reaction, but you're clearly used to your shrieking child as you didn't tell him to stop. In fact, you just ignored him.The woman with her must have asked what went on as I heard her say she covered her ears. The friend then said really loudly "oh, she's one of those". One of those. One of what? Non tolerant of shrieking child person? Why, yes I am.

What was the need of saying that? Couldn't you have just ignored my reaction? I've now got that stupid anxiety feeling- the one of something feeling hot in my belly and I can feel the adrenaline going round my body. It's probably anger at myself as I didn't say something back to the ignorant woman. I wish I did, but my super powers of using sarcasm as a comeback aren't that strong these days. Although I'm disappointed I couldn't think of a comeback, I am proud of myself as I didn't cry! That would have upset me last year, but I just breathed through it.

I'll end on a good note- I have joined the Expert Patients Programme. I've no idea what to expect. I'm really hoping it's not full weirdos like the ones that were at the support meetings. Perhaps they'll brainwash me to like sprouts or something? I told you I had no idea of what goes on!

It's Good to Talk

2010-09-08T14:22:00.000+01:00

Bob Hoskins

Bob Hoskins famously said that line in the BT adverts he starred in, early in the 90s. And I have to agree with him. I went to a CFS therapy session last week and spent a good half hour crying.

CFS therapy is run by a CFS therapy service in a local hospital. It does not have much funding and there was avery long waiting list. I think it took me nearly a year to get to see my specialist nurse. In that first (or was it the second?) appointment she gave me a very thick booklet full of useful information on understanding CFS, and more importantly, how to get better. I've now started some gradual exercise since I'm feeling stronger these days and my appointment was meant to be structured around that. We normally talk about what I've found difficult and how to deal with it. This time I somehow mentioned something about how I hide feeling tired and achy and the nurse picked up on that. I have been hiding how achy I get because, well quite frankly, I don't want to bore people with it. I just want to get on with it. But, the nurse said by hiding it I'm not helping myself or other people. I'm making life harder. I find it difficult to ask for help, and by covering up I perhaps am pushing people away, or some people will think I'm fine. I'm not giving a health update every five minutes, but I am letting people know if I need to sit down or something.

It makes such a difference to be able to talk to someone who understands the condition, and who knows why I feel a certain way. The only bad thing is that I don't think she agrees with my diagnosis of Fibromyalgia and that's a bit of a worry as I've been told that the CFS clinic will deal with it so I don't see too many people. I'm also going to be going to a pain management clinic so hopefully they'll be able to help a bit more with that.

The Positives and Negatives

2010-08-26T15:28:00.000+01:00

It's hard being in your early 20s, and it's even harder living it up when you're tired. I've been thinking of going out in the evening, perhaps to a bar. I haven't done that in a very long time. I really want to, but at the same time I don't. Perhaps it would be a good idea to go through why I don't want to first:

I'll be tired the next day

Obviously, I'll be tired. Anyone who goes out in the evening is tired the next day. I'm thinking about the day after the morning after! I'm worrying about how I'll feel the next day- completely drained and I really hate walking round feeling like a zombie.

It will be noisy

I don't need to explain this one, do I? It will be noisy- music, people talking, annoying people shouting or screaming. I'm getting better at coping with this, but if there's sudden noise it really bothers me and hurts my ears.

Drinking makes me feel like a zombie

I'm talking about 2 beers, or 2 glasses of wine! I feel like a zombie the next day. I feel drained and I've already said I hate that feeling

It will put me back days

It will have a knock on effect: I'll get up later the next day and then my sleep pattern will be out of whack. I've finally got it under control (sort of), and it took me ages to do that. I don't want to spend ages getting it back under control

That's the negative. Let's list the positive:

I'll have fun
I'll see friends
I'll be out of the house
I get to wear nice clothes and put on make up
Did I mention I'll have fun?

I hate having to weigh up if it is worth it or not. I want to be able to just go out and have fun. Most of all I want to be spontaneous like other 20 somethings. I sound like a toddler with all these 'wants'. I would like a social life please, without all the side effects of pain and zombie-ness. Is that too much to ask?

It may be a little accomplishment...

2010-08-18T16:49:00.001+01:00

Photo: The Puppy

but walking the dog today was a big accomplishment to me. Since we got the puppy last year I've been wanting to take her for a walk, but been unable to. I went for one walk, but she practically killed my arms as she was being Eager Puppy back then and all excited about being outside.

Today, although 10 months old (maybe 11?), she is quite calm. She LOVES sleeping, but does enjoy her walks. I took her out (by myself) for about 5 minutes and she just strolled next to me, as if she knew to take her time.She kept looking up at me as if she was thinking,"What are you doing? Why are walking with me? You never walk with me!". But, I think she enjoyed it. I know I did.

Here's an Idea for Ellen

2010-08-17T15:28:00.001+01:00

Photo: Ellen's Flag

People reading this in the US will probably be wondering why I am so behind on the idea of Ellen DeGeneres taking over the world. The reason is because over here in the UK her show is shown on a not very well known satellite TV channel called Diva. This channel shows several American TV shows including Oprah who enjoy showing...shows from the distant past, or out of order.

Here's an example: I'm watching Ellen right now, and she's talking about the Olympics. The screen behind her is over snow, so I'm thinking it's either from before Christmas, or from January onwards (EDIT: Just googled and this show was aired in February) This is a game I like to play whenever Ellen is on: Guess the date of the show! It's like going in a time machine and visiting the past every time I watch.

Now, you are probably thinking what the hell has this got to do with Ellen taking over the world (and also why am I writing about Ellen). Well, I don't think she has thought her plan through very well! If she really wants to take over the world (and I think she should- more people need to laugh and dance in this world), then surely she should be making sure people are:

Aware of her plan of world domination
watching shows that are not from the past

The catch of this is if I hadn't watched the shows that are airing from the past (remember, this one I'm watching is from February!), then I wouldn't have found out about her plan for world domination and wouldn't be writing this blog post about how annoying it is that the channel likes to put on old shows that are out of sequence and making some people more aware of her campaign. Perhaps that was her plan all along? She is an evil genius... except not evil, more lovely than evil. Perhaps more like a poodle, since I think they're evil dogs, but at the same time are cute. They're also meant to be intelligent and my auntie's Labradoodle dances. So yes, Ellen is more of a poodle genius, not an evil genius. That does not make sense, not one little bit.

Housekeeping

2010-08-07T13:48:00.001+01:00

That's what my teachers would call it in school. The notices, announcements and general things like that was all called housekeeping. They would say '...and now a bit of housekeeping'. I always thought it sounded very formal, but I'm using it now as this is what this post is all about: notices and announcements.

I'm on Facebook. Well, I'm not, but my pseudonym is. That's right Forgetful Girl has her very own page! I couldn't make a profile as Facebook won't allow 'Forgetful Girl' as a proper name, so don't think I'm all big headed with asking for 'fans'. That's the only way it would let me on the bloody thing. I wanted to be friends with people online, but still want to be anonymous so I thought this would be a good way of doing it. There's a button on my blog page if you would like to like me. I promise I won't spam your feed with annoying things, more like I will spam your page with weird and wonderful things that I find on the net. I also wanted to be on Facebook for the days I can't write a full blog post but still want to connect with people.
I changed my comment system. It's now made by Intense Debate which allows people to reply to other people's comments which I find really cool! There's also a fantastic thing called 'Comment Luv' which allows you to show off your recent blog post. I thought that was a really good thing!(I don't mind if you want to post as a guest, but you can use your Open ID (you can use your blogger id), or log in to Intense Debate. )
I have a new way to follow my blog: you can subscribe via email to read my posts. Just type your email into the box on the right hand side.
I've been away for a week so that's why there is no new post. I've had a mini break which was wonderful. I also used a steam room and had to be dragged out of it because I was enjoying it a bit too much.
I lied. My hand is really hurting so that's why there is no blog post.
I'm still coming to terms with having Fibro and reading up on it. I'm confused, worried and anxious and that doesn't help. I don't know how I feel about it, never mind blogging about it.
I'm reading everyone's blogs and trying to leave comments but my hand bloody hurts.
I'm no good at typing with one hand. It's pathetic.
I can't open my bag of chocolate buttons. I want the chocolate to feel better, yet it's making me ache from trying to open it. The chocolate is taunting me. I HATE YOU CHOCOLATE BUTTONS.
I love you really.
Can anyone open this bag of buttons for me?

And another thing to deal with...

2010-07-26T21:49:00.001+01:00

Image: "Don't Panic!"

Since I've had different aches and pains over the past year or so, my GP referred me to a rhumatologist. I was feeling quite happy about this since the stupid pain in my shin hadn't gotten any better, nor was it improving with rest. Basically I would walk and it would hurt, I would rest and it would hurt. I hadn't a clue what was going on and neither did my GP. I was getting fed up going to see my doctor and getting called 'bizarre'. I was also getting a bit annoyed with my specialist nurse at the CFS clinic. She was putting all my aches and pains down to CFS, while I've been having thoughts that they were something else.

The rhumatologist appointment was one of the best trips I've had to a hospital. The nurses were friendly and efficient and a medical student took my loooong medical history. She even guessed right on what the diagnosis was! When I saw the consultant she told me she was 80% sure of what I had before examining me. She asked me to take my jeans off so she could examine me. A nurse that reminded me of Mrs Overall helped take my jeans off and covered me with a sheet.The doctor pressed different bits of my body and then asked me to get dressed. When I sat back at her desk (yep, she wasn't doing that creepy 'let's make the patient comfy and sit opposite without the barrier of a desk between us thing that freaks me out) she gave me a picture to look at. It was a diagram of a person with different points shaded. She asked did it look familiar- each shaded area represented an area of pain- and it was as if someone had drawn a diagram of me!

She told me I have Fibromyalgia. Just another thing I have to deal with! More information on what Fibromyagia is here. I'm still getting my head round it. It explains a lot about how I've been feeling over the years. The doctor thinks I developed it after having Glandular Fever. I still have CFS and apparently the two sometimes go together. I've been referred to a pain management clinic to manage it.
So, once again I'm having to learn about dealing with something. Luckily, there has been a lot of research into it and lots of information is available- I just have no idea where to start!

Do you know of any good sources to read about Fibromyalgia? Do you have CFS and Fibromyalgia?

Edit: Some of you may not know of/heard of Mrs Overall. She's a character played by Julie Walters described on Wiki as " the elderly tea lady, who believes all problems could be solved with a nice cup of tea, a macaroon and an anecdote. One of her many specialties is home-made sherry served in a mug" She appeared in the fantastic Acorn Antiques by Victoria Wood. Here's a clip:

Where's my sticker?

2010-07-22T17:55:00.000+01:00

Today I was told I was brave by a doctor and several nurses. Whenever I get told I'm brave I don't think I have been. There are more braver people in the world then me. What about people fighting cancer? What about the young people who care for their parents? They are the really brave people, but I suppose people living with chronic conditions are brave as well! We live in pain, in a world that doesn't understand, or chooses to ignore our pain and we have to fight to be brave. These stickers are not just for kids who bump their heads or cut their knees. They're for the people who have to live with a condition, or fighting for their lives, or are helping someone they love. These stickers are for you.

I was told I was brave because I had several tricky blood tests that really hurt. I've also been given a new diagnosis. I still have CFS, but I now have something else as well (just what I need!). I'm still getting my head round it and not ready to write about it. I need to know more. I need to educate myself, after all knowledge is power.

So that's why my blog is so scary...

2010-07-15T12:46:00.000+01:00

I write like
Stephen King

I Write Like by Mémoires, Mac journal software. Analyze your writing!

Will post a proper blog entry soon- feeling a bit rubbish at the moment and Major Mind Fog does not allow me to be my witty, fantastic self (it does however let me be big headed).

Busy Days and Hot Nights

2010-07-04T13:27:00.000+01:00

Last night was unbelievably hot over here in the UK. I had both windows in my bedroom wide open, and I had the door open to see if it would cool my room down. It didn't work, and it does not help that my quilt is a 13 tog. I discovered that last night (morning?) at 3am when I couldn't sleep and looked at the label. How crazy is that? I've been wondering why it's so bloody hot at night and it's because I have a quilt that's for winter. I thought I was having hot flushes at 23 years old...

You're probably wondering why I sleep in a bed that has a quilt when I'm so hot. It's because I cannot sleep without one. It feels so strange not having anything over me at night, I feel like something is going to come in my room at night and kidnap me or something. Probably dinosaurs. I've always thought dinosaurs were coming to get me at night time while I was asleep after watching a pirate copy of Jurassic Park when I was 8 years old. You would think I would be terrified of going to the bathroom and getting mauled by a T-Rex.

I read a few weeks ago that The Bloggess cannot sleep without a quilt either, and lots of people said the same thing on Twitter. Glad am not the only one (although I think I'm the only person who fears dinosaurs)

I probably should mention the busy days that are in the title of the post so it makes sense. I've been out 2 days in a row! I've been shopping on my own, which I haven't done in a long, long time. I only bought a t-shirt but it felt good to be independent. Yesterday I went to the cinema. It felt really good to be out enjoying the weather (even if it makes it hard to walk). It's so hot at night that even the puppy cannot sleep! I gave her ice cubes to crunch on and apparently she was awake at 3 am. She didn't wake up at her usual time of 6.30am, my mum had to come down and wake her up at 8.30! She looks very, very tired. I suppose everyone has trouble sleeping when it's hot!

Chronic Babe Blog Carnival

2010-07-03T13:31:00.000+01:00

The latest edition of the Chronic Babe Blog Carnival is here! This edition's theme is advice for new Chronic Babes. Read all about it here.

Survival Guide 3- Welcome Party

2010-06-26T18:32:00.001+01:00

I remember when I first got my diagnosis. I was in a tiny room with Scary Consultant and my mum at the hospital. He had just called my mum back into the room after examining me. He didn't say much while examining me. Just looked at my throat, my eyes, checked my heart, lungs and poked my stomach. He also talked to me for about 5 minutes about what I want to achieve in life, and just before he called my mum back into the room, he said that he would "endeavour to me that I will graduate". That was the only thing I cared about (and still do!) and he knew it.

Once my mum was back in the room, he sat down opposite me. Not behind a desk, but that creepy sitting-opposite-the-patient-to-make-them-feel-comfortable which makes me feel uncomfortable because 1) the doctor was staring at me and 2) I couldn't stop staring at his crotch because his pants were too tight(Yep, what a way to give me the news!). As soon as he sat down he said " You have post-viral Chronic Fatigue Syndrome". No breaking the news to me gently or saying "Well, I think...". He just gave it to me straight. And you know what? It was better that way. It seemed like a definite diagnosis. I cried when he told me, and he tapped me on the leg and gave me a tissue. He said that's the normal reaction. I said I was relieved. He then went on to talk about some other stuff, but I cannot recall what. I do remember him giving me a sheet with basic guidelines on how to stop napping during the day and that I should get up and move every hour to help my circulation. He then said he was referring me to the CFS Therapy Service, and then like every doctor, sent me for a blood test because it seems that doctors just like to take my blood.

I came out of the hospital feeling like a weight had been lifted. I now knew what was wrong with me. I wasn't making myself feel ill, it wasn't all in my mind. It was something definite. The next day I cried. I had a chronic condition and it was just starting to occur to me. These are things I wish I did back then, or I think are good to know after getting a diagnosis of being what Jenni Prokopy calls a 'Chronic Babe':

FG's Survival Guide For Brand New Chronic Babes (& guys)

Be wary of Google
Tempting as it may be, do not Google your condition and read random things written by people (says she who is writing a blog!) on the Internet. After a diagnosis, you want to stick to trusted sources so you don't read anything scary. You can find a support network on ChronicBabe, and the friendly people on there can probably point out great websites that are not scary and make you want to curl up in a ball and cry.

Insist on being referred to a specialist
It's probably a good idea to see a specialist in your condition. You can really tell the difference between talking to someone in the medical profession who hasn't a clue, and someone who knows what they're talking about.

Does your doctor know?
Make sure your GP is kept up to date with any changes, no matter how trivial. And do not be afraid to educate your doctor! Tell them how you're feeling, and what you need.

Be an informed babe
Look up reliable charities in your condition for recent information, and helpful tips and tricks. They'll have valuable resources as well!

Make time to relax
Take the time to relax after getting a diagnosis. You will have been told a lot of things, and it can take a while to sink in. Just relax and do something you enjoy.

Tell family and friends
Although it is a personal decision, it might be a good idea to tell family and friends. You will have help and support and they will probably want to know. For help telling family and friends, charities normally produce booklets full of information to help inform other people.

Eat well
It's important to eat well and it will make you feel good about yourself.

Be selfish
Now is probably the time to think about yourself. Be a little selfish and say "no" now and again!

Treat yourself
Give yourself a little treat to make yourself feel good. Whenever it's a buying something, or getting a massage or watching a DVD, treat yourself to something and stay feeling happy.

Keep positive
Keep thinking positive!

Do you have any tips, tricks or handy advice for new Chronic Babes?

WAMCARE Auction

2010-06-23T16:47:00.000+01:00

"The Worldwide Association for ME/CFS Awareness and Research exists to help stop the tragedy of ME/CFS in several different ways. Our goals are:

to spread the truth about ME/CFS - that it is a biological disease, as scientific evidence shows, and not psychological in nature
to end stigmatization and abuse of ME/CFS patients around the world
to support people with ME/CFS and their families in every way we can
to raise funds for real, useful biomedical research, so that causes and treatments and ultimately CURES can be found" WAMCARE

They're currently holding an auction to raise funds. They have lots of things to bid for, including celebrity autographs. You can find more info here. I'll be bidding for one or two autographs!

FG's Survival Guide 2

2010-06-22T20:26:00.000+01:00

It's time for another survival guide!

I enjoy *shopping. I hate wasting my precious energy on walking around shops trying to find a certain item. I don't particularly enjoy people bumping into me, nor do I appreciate having to stand for ages in queues. Luckily, I've come up with a few handy tips and tricks to save my energy, to prevent pain (sort of) and to curb the anger and frustrations that go hand-in-hand with shopping.

*I'm not just talking about clothes shopping, but any kind, be that food, music, electronics etc.

So, I give to you my shopping survival guide!

Write a list
It doesn't matter if there is only one item on the list (is it still a list if there is only one item?), write it down before you forget the reason why you have left the house!

Wear comfortable shoes
Comfy shoes are a must for any walking. Even if you're walking for 5 minutes, it's still important to look after your feet.

Take your time
It does not matter about the person behind you. If you need to, dawdle. That person huffing and puffing behind you can just get past with a quick 'excuse me'. Or, if you want to be nice, move over so the impatient person can get on to whatever important business they have to attend to.

The shopping trolley is your friend
You're probably thinking this one doesn't make sense. Why push a heavy metal cart around when you're already lacking energy? Because, I find pushing a trolley means I don't have to carry a basket of things and put the basket on the floor when it's heavy and then go to another aisle and forget where I put the basket (true story). It also means you have something to support yourself with, and if you have a bag with you you can put that in there as well without having to carry it around.

Sit down on a bench
Take a break and sit down on a bench, seat or stool. Just relax and sit down and think about what you need to do next. If it's too noisy, or you just need to take a few minutes to relax where it is quiet, shops don't normally play music in toilets (or, if they do, it's normally quiet) so it's an ideal place to just sit and close your eyes. Same goes for when trying on clothes. Dressing rooms might have a stool to sit on, so use that to your advantage when trying on clothes.

Take a snack
I take a bottle of water and raisins with me. They're handy to take with me and to snack on in a shop.

Get a lift
If you're using public transport and you have to walk to the bus stop or train station, try and get someone to give you a lift there, if possible. It will save you some energy. If you're driving to the shops, try and park to where will be your last shopping destination. It's more likely that you will be feeling tireder at the end of your shopping trip so it won't be a long walk back to the car.

Empty your bag
If you're like me, you probably have a bag that has everything in it: medicines, sweets, purse, phone etc! I didn't realise how heavy it was until my mum picked it up and told me it was far too heavy. I now just take the essentials, and I've got rid of my massive purse with lots of loose change.

Ask for help
Most shopping assistants do not mind if you ask for some help. If you don't know where an item is ask them to get it for you, or to show you where it is. That why you won't be wasting energy looking for the item. They can also help you pack your bags or take your bags to the car.

I now do most of my shopping online. Well, I window shop online and think about what I want/need to buy. I've probably saved more money than how I used to shop. Remember, you can now get most of your food shopping done online!

What are your tips and tricks for shopping? Share them with me!

Comments have disappeared!

2010-06-22T19:52:00.003+01:00

~~The title says it all: my comments have disappeared!~~ THEY'RE BACK!

I changed my blog address from www.cfs-blog.blogspot.com to http://forgetfulgirlblog.blogspot.com/ and now I have no comments. It looks like I'm all alone on the internet. Hopefully, a solution will be found soon!

Since I've changed my blog address, I'm concerned that people won't be able to follow my blog. If you are reading this/can still see that I exist could you please leave a comment so I know?

Pollen gives me (hay) fever

2010-06-17T19:56:00.000+01:00

Before I go on to write about wonderful, wonderful pollen I would just like to say thank you for reading and commenting on my last post. I've avoided the internet for a while after that post (well, that's a lie. I just went on websites I enjoyed and made me laugh) and just read it again now. I cannot believe how low and sad I sounded. It was all true and I'm glad I kept it in as I found other people have felt the same. I'm not the only one who feels boring when with people, and I just have to accepted that, perhaps, it's all part of CFS. That horrible, negative thought will eventually pass and I just have to ride it out. That post was written when I was feeling very low, and quite tired. Luckily, I'm feeling a lot happier this week.

It is summer. And with summer comes hay fever. Bloody annoying. I enjoy sitting out in the garden reading a book (alas not for enjoyment, but for university), what I don't enjoy is the constant sneezing! My body is telling me that something is trying to invade and attack. I understand that. But does it have to go on a massive defense and make my glands and throat so sore it feels like I'm having a bad relapse? Yes, indeed it does.

I managed a 10 minute walk with the puppy today and I can feel my muscles working again. It's a strange feeling. My calves are aching and feel really tight, but I'm enjoying the pain. Does that make me some kind of masochist? I'm not getting a kick out of the pain, but I'm enjoying the feeling that they've suddenly awoken from their long slumber and are not getting back into condition. I wish the same could be said for my bingo wings!

I Think I'm Boring

2010-06-04T16:45:00.002+01:00

Disclaimer: I wrote this last night when I was feeling pretty low and extremely tired. I normally try to stay positive in life, and on my blog, but it's hard to be positive all the time. Just wanted to tell you this before reading. I've decided to keep it in as I suppose it's all part of having a chronic condition, and I'm blogging (in part) to raise awareness. Also, please bear in mind I was tired when writing this, so it might not make sense.

I can't help but feel boring when I'm with my friends. They don't make me feel boring, but they're all busy with their jobs, relationships or university. I feel like I'm just doing nothing with my life. I feel like I have nothing interesting to say anymore. I find it hard to socialise. I don't know if that's because I've been stuck at home and I'm out of practice, or it's all part of CFS. I'm sick and tired of getting my words all mixed up, or forgetting what I was talking about.

I was with some friends and I just felt like I was the odd one out. I know I'm better than how I was this time last year, but I feel that I've improved physically, not mentally. I'm fed up of the mind fog when I'm trying to have a conversation with someone. I'm sick of frowning and trying to concentrate really hard on what they're saying, I'm even more fed up with forgetting what the person was talking about. I feel like an empty shell; like my personality has been hidden deep inside of me. I want my sense of humour back, my spontaneity, my wit! I'm fed up of feeling empty when I should be living life. I feel like I've got this cloud over me and it's stopping me from being happy.

What's making this even worse, is that my leg pain is getting worse. I'm having trouble getting to sleep and it's hard to walk. It hurts when I'm sitting down. I just don't know what to do anymore; anything I do makes it worse.

I Think I'm Boring

2010-06-04T16:31:00.001+01:00

Disclaimer: I wrote this last night when I was feeling pretty low and extremley tired. I normally try to stay positive in life, and on my blog, but it's hard to be positive all the time. Just wanted to tell you this before reading. I've decided to keep it in as I suppose it's all part of having a chronic condition, and I'm blogging (in part) to raise awareness. Also, please bear in mind I was tired when writing this, so it might not make sense!

I spoke too soon

2010-05-30T17:44:00.004+01:00

You know how I mentioned my last crash only lasted for 2 days and I was quite surprised by it? Yeah, well CFS is a bitch and decided to make me feel fabulous and think I was over the crash, so me being hyped up on energy made use of the glorious feeling of freedom and energy and not only baked a strawberry tart and brownies, but also made tea for my parents. I made pizza from scratch. Scratch I tell you! I made the dough, the pizza sauce! EVERYTHING! I told you I was feeling very energetic. I wish I took pictures. They were yummy. The brownies... not so much. I burnt them (forgot they were in the oven!).

So on Friday night , after feeling all hyped up on energy, I started to 'come down'. I'm talking like I'm on drugs here... (well I am. Not those kind of drugs, just the ones the doctor gave me). I've got the lingo down, haven't I? Anyway, Friday felt like my energy was starting to drain from me. Normally getting off the sofa is a little bit of a struggle. When I'm starting to crash, it's hard work. That's when I know I'm going to feel like crap next day. When I woke up on Saturday, it felt like I had been weighed down with bricks all over my limbs. They were so heavy to lift. It took me about half an hour to get out of bed. I started to loosen up once I got moving, and once I had taken Naproxen I was moving again.

Yesterday is all a blur. I was feeling that fatigued. I remember getting up and then having a nap while Doctor Who was on. That nap was so nice. I just needed to sleep. I'm starting to feel better today, but I am taking it easy. Probably won't leave the house for a few days so my energy levels improve.

Just when I feel like I'm improving I crash. It's a reminder I need to take things easy, but it's so hard when I feel like I have energy. I get fidgety when I have all that energy- it's like my body does not have a clue what to do with it.

Jo posted something on one of my entries that I really need to remember:

Remember the 80% rule, only do 80% of what you are able to, and save 20% for recovery. I.e stop before you get tired. Wish I could take my own advice.

Stop before you get tired. Such a hard thing to do, but something I need to learn to do! I feel like I've just completed a marathon. Suppose in a way I have. My muscles are so deconditioned that anything is exercise for them!

Image

The inevitable crash

2010-05-28T15:59:00.002+01:00

I last posted about my glorious week. I spent Sunday out in the garden with my brother and puppy. If you didn't already know, we've been having fantastic weather in England (not this week, however) for a few days. By fantastic weather I mean HOT. So hot that the Daily Mail likes to point out which countries in Europe are colder than us. Probably also to rub it in to anyone on holiday in those countries... that's how nice the Daily Mail is.

So there I was sitting in the garden. I had suncream on- I promise! The next day I woke up with sunburn on one shoulder and the side of my neck. It was red! So red and sore. I've been rubbing in E45 lotion all week and only now is it fading. I'm going to have one big tan stripe on one side of my body. Very attractive.

After a busy week I had the inevitable crash. I hate how I have such good days and then get hit with a wall of fatigue. Luckily, this one only lasted about 2 days. I think it's because I've been pacing myself. I'm finding it hard to do, but I know it does help. I'm seeing an improvement in my energy levels, but I'm still getting up mid-morning and I think my body has adjusted to that.

Anyone got any tips on how to get up earlier without feeling like you're being woken in the middle of the night?

Sunshine, film and drinks

2010-05-22T17:37:00.000+01:00

Could this week have been any better? Well, yes it could have been. The pain in my legs and feet could have gone away, and if I got to sleep before midnight and was able to get up earlier, then I would have had a fantastic week.

But, thinking back on this week, I have had a good time. It's been a busy few weeks with completing essays and exams. I have now completed and handed them all in, so I now have a stress free summer to look forward to! I have been out every single day this week which is a major change from the last month as I spent the most of it at home doing work and putting all my energy into that. Now that my uni work is all complete for this year, I have been able to go out and put my energy to good use!

OK, so some of the days was just a quick trip to hand in work, or a doctor's appointment, but it's still getting out of the house! Mid week I went out for tea and had a glass of wine, and I did the same last night as well. Once I've had a glass of wine I feel like I want to go out clubbing, but I know I'm not up to that yet!

I've been the beach with the puppy, who had a fantastic time in the water. The weather has been glorious! I am typing this outside in the sunshine. If only I didn't have hay fever!

Today, I plan on doing nothing. Nothing at all. Except sit out in the sun and relax. Bliss!

2010-05-22T17:20:00.001+01:00

Guess who's back...

2010-05-17T20:05:00.006+01:00

I handed in my final essay today. First half of final year is over! Only one more year to go and then I will graduate! This summer will involve a lot of reading, but for now I'm going to have a week of doing nothing. Except for going to the cinema to see Iron Man 2, and also going out for a drink!

In CFS news: I've been doing a lot better with uni work. It was a struggle, but I only needed one extension (I had 4 pieces of work due) which was a big deal for me! My legs and feet have been really bad. I haven't been able to do much walking and my doctor has given me some new painkillers. I'm just getting on with it since there is nothing else I can do.

This is just a quick update to say I'm back, and will be updating very, very soon!

How's the revision going?

2010-04-24T17:41:00.000+01:00

All images: We Heart It

It's going well. I do want to just put my head on my desk and give up, but I'm thinking that's a good sign! I need to learn to take more breaks instead of pushing through to try and do more work. I also need to learn to ask for extensions/help when I need it.

I'm nearly half-way through my final year of university. That's worth repeating! I'm nearly half-way through my final year of university! This time last year ( & the year before) I wasn't even thinking about university. I was avoiding thinking about it. But, look at me now-revising and reading and writing (oh my!). All good, even though it feels like bloody hard work at the moment. But, it's final year. It's meant to be hard.

I'll leave you all with this:

Will be back blogging soon!

Blog Carnival & a quick message

2010-04-07T15:23:00.001+01:00

The Chronic Babe Blog Carnival is now up and running! Go visit for a fantastic read. It's the first ever one, and I'm proud that I participated. It's a fun thing to do, and it's a great way of finding other blogs. Each blog is written by women living with chronic ilnesses/ conditions. I'm planning on participating in every one, even though it might be a bit difficult in the near future.

I won't be doing any big updates for the next few weeks- I am coming to the end of my final semester at university (for this year, anyway!), so obviously need to put all my valuable energy into revision and essay writing. I will do tiny updates here and there, so do keep visiting. As I said before, I'm planning on participating in the Chronic Babe Blog Carnival so will still be writing a few things. (I'm addicted!)

I will be following everyone else, as ever though! I have some great ideas for blog entries once I'm done (if I do say so myself!), so that's something to look forward to.

Wish me luck (& plenty of energy!).

FG, signing off!

30 Things About My Invisible Illness You May Not Know

2010-04-06T17:50:00.001+01:00

I found this meme on the Chronic Babe forum. It's all about raising awareness for invisible awareness.

1. The illness I live with is: Post-Viral Chronic Fatigue Syndrome (also known as ME)
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: change my lifestyle; uni is now part-time, I depend more on my parents and I have to pace myself everyday.
5. Most people assume: I'm better when they see me in a shop, at a party, generally when I'm out of the house.
6. The hardest part about mornings are: waking up and getting up. Sounds like every other young person, except I really struggle getting up. It takes me about an hour or so to fully wake up and get moving (espcially on a bad day). It feels like I've been woken up in the middle of the night.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my computer- is that a gadget?
9. The hardest part about nights are: getting to sleep. My mind doesn't shut off easily- thoughts come and go and it's hard to get to sleep when you're in pain
10. Each day I take on average 3 pills & vitamins (No comments, please), it varies day by day. Can be more.
11. Regarding alternative treatments I: am open-minded, but don't see them as the 'cure'.
12. If I had to choose between an invisible illness or visible I would choose: months ago I would have said visible as it would be easier for other people to understand, but now I chose invisible. I chose whether it defines me or not, wether I tell people I have a chronic condition. I'm lucky in that way.
13. Regarding working and career: it's a worry for me, but I still have my dreams about having a good career.
14. People would be surprised to know: that CFS has given me a greater understanding of other people. Living with a chronic condition makes you think differently.
15. The hardest thing to accept about my new reality has been: that some 'friends' will leave your life, purely because they don't understand the condition, or they don't want to know someone living with one.
16. Something I never thought I could do with my illness that I did was: go to university and (hopefully) complete my degree.
17. The commercials about my illness: are non-exisitant.
18. Something I really miss doing since I was diagnosed is: waking up one day and doing whatever I want without worrying about how it will affect me in a few hours time, or the next day. I hate the constant planning to conserve energy.
19. It was really hard to have to give up: caffine and chocolate for a year (my choice), but I couldn't handle it back then. It was also really hard to leave university when I first got ill and leave all my friends behind.
20. A new hobby I have taken up since my diagnosis is: blogging!
21. If I could have one day of feeling normal again I would: have a really busy day. Get up extremly early in the morning and see the sunrise. Just do all the things I used to do without having to worry about how it will affect me.
22. My illness has taught me: that life is precious, and that I used to take my health for granted.
23. Want to know a secret? One thing people say that gets under my skin is: 'You look well!' How the hell do you want me to look??
24. But I love it when people: help me without asking if I need help- carrying a bag, bringing me a drink. I also like it when people ask how I am doing, rather than how are you... it is different!!
25. My favorite motto, scripture, quote that gets me through tough times is:

Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful. Buddah

26. When someone is diagnosed I’d like to tell them: diagnosis is good. Now, you need to accept that diagnosis and begin to live your new life. There is hope, you can still have a (well-paced!) life.
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Mini-break

2010-04-06T11:37:00.008+01:00

I've been on a mini-break since Thursday, so haven't had access to the internet for the past few days. I didn't go far, just to the nearest city and stayed in a hotel for a few days with my mum. We went shopping, visited the museums and I bought a walking umbrella to use as a walking stick!

I made sure to pace myself while doing all these things. Luckily, the hotel was near enough to go back and have a rest!

I went to a lovely restaurant and had a calzone. Normally, when I have pizza it makes me ill but this was a proper calzone! It wasn't stodgy at all, it was delicious! We were in the restaurant for 2 hours and I seized up. My legs were just stiff and my feet really hurt. I had to cling ontomy mum to walk back to the hotel (it was only 3 mins away!). Actually, I rocked more then walked back. It's starting to wear off only now (3 days later!), so I'm taking things very easy.

I hope everyone had a lovely Easter weekend. I have quite a few Easter eggs, but can only eat a little bit of chocolate!

Image: We Heart It. Perfect for this post: pizza, shopping and sleep, all covered in this post!

Count the big and little things in life...

2010-04-01T12:40:00.009+01:00

I've stole this list from Fashion Fades which was orginally posted by Life in a Carriage House. It's a list of things (big and small) you've done in life.

The idea is to copy and paste on to your own blog and bold the ones you've done.

01. Bought everyone in the bar a drink
02. Swam with dolphins
03. Climbed a mountain
04. Taken a Ferrari for a test drive -
05. Been inside the Great Pyramid
06. Held a tarantula
07. Taken a candlelit bath with someone
08. Said "I love you" and meant it
09. Hugged a tree
10. Bungee jumped
11. Visited Paris
12. Watched a lightning storm at sea
13. Stayed up all night long and saw the sun rise
14. Seen the Northern Lights 15. Gone to a huge sports game
16. Walked the stairs to the top of the leaning Tower of Pisa
17. Grown and eaten your own vegetables
18. Touched an iceberg
19. Slept under the stars
20. Changed a baby's diaper
21. Taken a trip in a hot air balloon
22. Watched a meteor shower
23. Gotten drunk on champagne
24. Given more than you can afford to charity
25. Looked up at the night sky through a telescope
26. Had an uncontrollable giggling fit at the worst possible moment
27. Had a food fight
28. Bet on a winning horse
29. Asked out a stranger
30. Had a snowball fight
31. Screamed as loudly as you possibly can
32. Held a lamb
33. Seen a total eclipse
34. Ridden a roller coaster
35. Hit a home run
36. Danced like a fool and didn't care who was looking
38. Actually felt happy about your life, even for just a moment
39. Had two hard drives for your computer
40. Visited all 50 states
41. Taken care of someone who was drunk
42. Had amazing friends
43. Danced with a stranger in a foreign country
44. Watched whales
45. Stolen a sign
46. Backpacked in Europe
47. Taken a road-trip
48. Gone rock climbing
49. Taken a midnight walk on the beach
50. Gone sky diving
51. Visited Ireland
52. Been heartbroken longer than you were actually in love
53. In a restaurant, sat at a stranger's table and had a meal with them
54. Visited Japan
55. Milked a cow
56. Alphabetized your CDs- everything used to be alphabetised!
57. Pretended to be a superhero
59. Lounged around in bed all day
60. Played touch football
61. Gone scuba diving
62. Kissed in the rain
63. Played in the mud
64. Played in the rain
65. Gone to a drive-in theatre
66. Visited the Great Wall of China
67. Started a business
68. Fallen in love and not had your heart broken
69. Toured ancient sites
70. Taken a martial arts class
71. Played D&D for more than 6 hours straight
72. Gotten married
73. Been in a movie
74. Crashed a party
75. Gotten divorced
76. Gone without food for 5 days
77. Made cookies from scratch
78. Won first prize in a costume contest
79. Ridden a gondola in Venice
80. Gotten a tattoo
81. Rafted the Snake River
82. Been on a television news program as an "expert"
83. Gotten flowers for no reason
84. Performed on stage
85. Been to Las Vegas
86. Recorded music
87. Eaten shark
88. Kissed on the first date
89. Gone to Thailand
90. Bought a house
91. Been in a combat zone
92. Buried one/both of your parents
93. Been on a cruise ship
94. Spoken more than one language fluently
95. Performed in Rocky Horror
96. Raised children
97. Followed your favorite band/singer on tour
98. Passed out cold
99. Taken an exotic bicycle tour in a foreign country
100. Picked up and moved to another city to just start over
101. Walked the Golden Gate Bridge
102. Sang loudly in the car, and didn't stop when you knew someone was looking
103. Had plastic surgery
104. Survived an accident that you shouldn't have survived
105. Wrote articles for a large publication
106. Lost over 100 pounds
107. Held someone while they were having a flashback
108. Piloted an airplane
109. Touched a stingray
110. Broken someone's heart
111. Helped an animal give birth
112. Won money on a TV game show
113. Broken a bone
114. Gone on an African photo safari
115. Had a facial part pierced other than your ears
116. Fired a rifle, shotgun, or pistol
117. Eaten mushrooms that were gathered in the wild
118. Ridden a horse
119. Had major surgery
120. Had a snake as a pet
121. Hiked to the bottom of the Grand Canyon
122. Slept for 30 hours in a 48 hour period
123. Visited more foreign countries than U.S. States
124. Visited all 7 continents
125. Taken a canoe trip that lasted more than 2 days
126. Eaten kangaroo meat
127. Eaten sushi
128. Had your picture in the newspaper
129. Changed someone's mind about something you care deeply about
130. Gone back to school
131. Parasailed
132. Touched a cockroach
133. Eaten fried green tomatoes
134. Read The Iliad and The Odyssey
135. Selected one "important" author who you missed in school, and read
136. Killed and prepared an animal for eating
137. Skipped all your school reunions-
138. Communicated with someone without sharing a common spoken language
139. Been elected to public office
140. Written your own computer language
141. Thought to yourself that you're living your dream
142. Had to put someone you love into hospice care
143. Built your own PC from parts
144. Sold your own artwork to someone who didn't know you -
145. Had a booth at a street fair
146. Dyed your hair
147. Been a DJ
148. Shaved your head
149. Caused a car accident
150. Saved someone's life

Wish I could work 9 to 5

2010-03-31T12:27:00.003+01:00

"I can bring home the bacon: Thoughts about work and chronic illness."
That's the theme for the ChronicBabe blog carnival.


Image:We Heart It.I think I would just sit there and cry, or I would fall asleep on my keyboard...

My entry for the blog carnival over at ChronicBabe is slightly different. It's not about work because, well, I cannot work. I would love to have a job right now. Get up at 7 O'clock in the morning and get into work. Have fun with co-workers and work hard all day. Feel tired when I get home, but tired in a good way. Not the horrible way. Tired as in I've worked hard and I'll go to bed ready for tomorrow. And do the same the next day and know that I'm following a routine that is predictable instead of how I live now: unpredictable. I can wake up one day and feel OK, the next day? Like crap. But that's what you get living with CFS. It's an unreliable condition, which means perhaps in the future I won't be able to have a job because I won't be reliable.

What I can do though is go to university part-time (Part-time means I'm in for 6 hours a week, over 2 days instead of full-time which is 12 hours. My modules are shorter and my assessments are sometimes slightly different). I have lots of support to enable me to continue my studies which I am very lucky to have, and I'm extremely grateful. If I didn't have that support I doubt I could have continued with my degree. I also have a voluntary job for a CFS/ME charity. It works out about an hours work online over 2 months which is about as much as I can handle.

I've no idea about what I'm going to do after I graduate in 2 years time. I don't know if I will be able to hold down a job. I worry that if I go to an interview the people won't understand and won't give me a job and I'll end up living dependant on my parents. I depend on my parents a lot since I don't work. I live with them and they take me out. I can't handle public transport and they take me to all my hospital appointments. I'm in my early 20s and I still depend on my parents- not by choice though, like other people my age. I have no choice. Who would employ me when I know ~~I'm~~ the condition I have is unreliable? I sometimes wish that I was like every other young person in their 20s who can just worry about their dreams of the future- will their degree get them the job they want? Where should they go on holiday? Who should they live with? Instead, I worry about what tomorrow will be like. Will I be able to get out of bed? Will I be able to walk unaided? Will I be able to keep my commitment of meeting up with a friend that I had made weeks ago? Will I be able to go to university? I can only take it one day at a time, no longer dream about the future like every other young person.

The one good thing? My career ideas have changed. I still think about what career I could have once I graduate. I know there is still hope! I want to work to help other young people like me. I don't know what job that would be, but I know I want a job where I can help others, the same way others have helped me.

Sweet Dreams

2010-03-29T21:24:00.004+01:00

DISCLAIMER: I'm writing this while having a **Major Mind-Fog day, so please read this post with that in mind!

Photo from We Heart It

I've noticed I don't dream as much as I used to compared to pre-CFS days. I wonder why that is? Is it because I don't go into a deep sleep as much these days? Is it because I take a low-dose SSRI at night?

Since I don't have as many dreams these days (or, should that be these nights?), I mostly remember the dreams I do have. I have one recurring ~~dream~~ nightmare. It involves an Ex, and it scares me! I broke up with him for good reasons, and I don't regret it. My life is better without him. However, these nightmares involve me being back with my Ex. I ask myself in these ~~dreams~~ nightmares why I've gone back to him. Sometimes, I'm trapped in his house, other times his car. It seems I cannot escape from him. Other times I'm trying to break up with him and he won't let me. I had this dream last night, but I think I know why. I was watching this episode of Buffy before I went to sleep:

I've no idea what this dream means, but I know I feel relieved when I wake up and know I'm not with him! Do you know what this dream means? Do you think dreams mean something? Any of you have any strange dreams?

**Mind-fog, in case you don't know, is the name of a group of symptoms that affect the mind for the majority of people living with CFS/ME (it also happens with some other conditions as well). Just because physical pain isn't enough, CFS also affects the mind! Trouble concentrating, word-finding difficulties and short-term memory problems are common, as are having problems with decisions, directions and multi-tasking. It also affects my grammar and the way I put sentences together. Action for ME lists it as: 'Problems with thinking such as concentration difficulties, memory problems, difficulty finding the right words and problems organising thoughts'. Great.

Oh, and to make matters worse: my puppy head-butted me today, so I now have a major headache to go with Major mind-fog!

Friday's Frustrations

2010-03-26T17:10:00.003Z

I was told a while ago to avoid all stress (yep,that's easy to do while you're in your final year at uni) as it will make any CFS symptoms worse. It's true- if I get stressed I feel like I'm coming down with a cold. However, I found that getting irritated is a really, really easy thing do do lately. Probably because I don't have that much patience these days. If I'm in a queue at a shop and someone is taking ages, I start to get a little annoyed. I think I get pissed off easily these days because I don't go out much, so when I do venture outdoors am not used to other people, and other people's quirks.

I was in the supermarket today and loads of people annoyed me: people putting their trolleys in the middle of the aisle, people stopping to have a chat in the middle of the aisle, people just stopping in the middle of the aisle... I think I have a big thing about the middle of the aisle. I want it to be clear so I can just stroll down without worrying that I'm going to get mowed down by a little old lady who can't see over her trolley.

But what really annoyed me was the man who had parked in a disabled space and didn't have a badge. That meant we had to park further away, which meant more walking for me. Didn't appreciate that one.little.bit. He probably didn't think about how his selfishness would affect the person who needed that space, and that probably annoys me even more.

OK, Friday's rant is over! I feel better already. Anyone else what to vent their Friday Frustration?

A letter to read

2010-03-24T17:31:00.005Z

The Guardian used to have a blogger called Dr Crippen who is a NHS doctor. His blog would have various tales of his experiences as a doctor and his views on health stories around the world.
Dr Crippen has now shut down his blog. He hasn't stated why he has decided to stop blogging, but I am glad he has. He used to write about CFS/ME as if it were a made up illness. He said some really bad things, that were put up on a popular website, and sometimes printed in the Guardian for lots of people to read. This was no help to the people who are campaigning for CFS to been seen as a real condition. Sadly, there are still doctors out there who don't believe in CFS.

Unfortunately, I can't show you any examples on what Dr Crippen said about CFS as his blog has now been shut down. I can, however, show you something he has written about fibromyalgia that I found on a message board. He wrote:

'In Whiplash and Other Useful Illnesses, Andrew Malleson, a Canadian psychiatrist, shows how an occult conspiracy between doctors, poor medical science and vulnerable patients has generated a bogus "whiplash" industry. Family doctors in the UK usually find that patients who have no objective signs of physical injury, but still present with persistent symptoms that they relate to "whiplash", often have more subtle and possibly psychological problems. They may even be on the slippery slope to "fibromyalgia" – whatever that is. There is any amount of bad medical science upon which both doctors and patients rely.

Malleson argues it is the doctors who are to blame. When we should be saying to people, "Well, yes, I am sure you have been a bit shaken up by the accident," our computers encourage us to enter "whiplash" on the patient's summary. We need to stop doing that. We need to reserve the diagnosis "whiplash injury" for patients who have grade 4 and grade 5 problems.

Above all, we need to protect vulnerable people from alternative quacktitioners who make a living out of conditions such as "chronic whiplash" and "fibromyalgia", and will keep rubbing a patient until his wallet is empty.'

Some people who run a website called MEaction decided enough was enough, and have written a letter to the Guardian in protest of this 'doctor'. You can read it here, and you can also add your name to the letter if you want to.

DGCTQAN2HAFR

FG's Survival Guide

2010-03-23T16:36:00.001Z

One of my favourite past times has always been watching films. I have even got an A-Level in Film Studies, and have chosen to study it on my degree programme.

Before I got ill I used to go the cinema about once a week (expensive past-time, I know!). I really liked going at nighttime. The atmosphere in the cinema is some how different then. It's more exciting, like a night out out to the theatre... but with casual dressing and a big screen to gawp at.

I stopped watching films when I first got ill. I just couldn't watch them. The sound was unbearable, and I couldn't concentrate long enough to follow the plot. I would be constantly asking people what had happened- imagine trying to do that in the cinema (that's another reason why I stopped going to the cinema)! I didn't go to the cinema for a while. I broke up with the cinema, and with films. The relationship wasn't working out well. That was until I went last year for the first time and LOVED it. I've been a few times now this year and I'm starting to fall in love with films again.

I'm going to start a survival guide. It's a list of items or ideas that I've found to be really helpful, and hopefully it might help you!

FG's Survival Guide: Cinema

Go with someone.

Don't go the cinema alone. You'll get paranoid and think people are watching you. You'll start to think they know you have CFS and they're judging you. You'll think you can hear whispers:

"Look at that poor soul, she's all alone", "She mustn't have any friends" "I didn't know people with CFS could go out", "She's not ill- look at her! She's out, she's walking and she looks okay..."

You will end up walking out the cinema, and will feel very sorry for yourself. You wasted money on a ticket, on that drink. Hell, you've wasted precious energy getting out of the bloody house! Getting dressed! So, my point is go with someone. And make it someone you know, not a stranger. You can always have a little nap on their shoulder if need be...

Eat something before you go.

Not only will you save money, but you'll stay awake for the film! I always find eating something, even just a tiny snack helps my energy levels stay up. You'll be following the plot with no problems at all.

Arrive early

This is a no-brainer for me. I always arrive early, even before I had CFS I liked being on time. I've found now it's a good strategy to help those nervous butterflies stay under control. I always seem to get them now whenever I go out. Arriving early also means you can pick your seat. It also means you can get comfy before the film starts. If you sit in the middle you won't have to bother getting up either to late-comers!

Take a cardigan

Wear layers that are easy to take off and put on. Cinemas are always freezing for some strange reason...

Take earplugs

I carry earplugs with me everywhere just in case things get too noisy for me to handle. Mine come in a handy case so I don't lose them. They're pretty special- they don't block out the noise, just turn the volume down. They're also good at drowning out the annoying chit-chat or wrapper rustling. The noise in the cinema can sometimes be a little too loud- especially on those OK-ish days, by using the earplugs you get to go out, but not have to worry about the noise hurting your ears.

Be aware of 3D

3D is amazing, but can hurt your eyes after a while. I've found taking the 3D glasses off for a few minutes helps. You won't be missing much since you can still follow the action, you'll just miss out on the special effects for a little while.

Stay seated

Don't be one of those weirdos that get up as soon as the credits start to roll. Stay seated and have a little chat with your cinema buddy. The people working at the cinema will not tell you to move straight away (they'll just stare at you!). There is really no need to jump up straight away. Allow yourself to get ready to go slowly so you're prepared to walk (you've been sitting for a long time!). You'll avoid the crowd coming out so you won't have to stand for a while, plus you might see something extra once the credits have ended.

Do you have any survival tips for the cinema?

BFFs and FFs - do you know the difference?

2010-03-15T17:04:00.019Z

That's Best Friends Forever and Fake Friends FYI

Friendship. It's a tough subject when you have a chronic condition. It's hard enough being ill without the feeling of being alone getting in on the act as well. Why can't we all just have a group of friends that we know for certain will stick around forever, no matter what. Why can't we just have a group of friends like these...

Yep, I know they're all on TV, but it's nice to pretend!

~~Because real life sucks!~~ Because life is hard, which means friendships are hard work. It's an equal partnership. Remember the good old days when you were little and you had a new best friend every week, when you fell out with a friend one day, but would make up the next day? Remember those friendship promises- 'stick a needle in my eye' or pinky promise that you would be friends forever?

Friendship used to be so easy when you're little. As you get older it gets harder. The friends you made move to university, or move to different parts of the country; it's harder to stay in touch. I thought when I went to university I would make some friends that I would have for life. I really thought I had done. I had a group of friends that I would hang out with. 6 girls together. We would meet before classes and have coffee together, we would all go the library and do our research together. We would skip classes and go to the bar instead, we would have long nights outs and look out for each other. Some of us were even planning on living together after graduating.

But I got ill. For the first 2 weeks or so they called and texted me asking how I was. I really wasn't up for keeping in touch- I was that ill at the time- but I tried my best. As the weeks went on, the calls were getting less and less. Eventually, I had to tell my friends that I wouldn't be coming back to university. I didn't hear from them after that.

I thought that friends were meant to stick together no matter what. Back then, I was really lonely and really needed a friend. I would go on Facebook and see pictures and status updates of friends' nights outs and it would make me cry. I felt like my life was over, that I was stuck being in the house with no friends. I cannot explain how I felt when I saw their graduation photographs.

I've made it sound like I didn't have any friends back then. I did! I had the friends from years ago that I've always stayed in touch with. The only thing was some of them didn't really understand how ill I was. I didn't see one friend for a couple of months which really upset me. But now I realise that it must have tough for those real friends to see me ill. They probably didn't know how to react or what to do. I remember telling those old friends that it felt like my life was stuck on pause while their lives were on play. I just felt stuck in limbo.

Recently, those friends from university have tried to get back in touch with me. Some of them have gotten engaged to boyfriends (we all used to go out together with our boyfriends in a big gang sometimes), others have moved in together and they all graduated together! I'm living at home, and I'm single. I sound a bit jealous, perhaps a bit bitter. Maybe a tiny bit of me is... but then maybe I'm just jealous that they've got to live out their lives the 'normal' way, the expected way. I haven't bothered with them. Much like how I've posted about the people at university- I don't want to be around people who act like that. I had a time in my life when I was desperately needed my friends and they weren't there for me.

Some people go through their lives with loads of friends and think they're really popular and loved. I have a few friends who I know will be there for me if I need them. I have a few friends who will give me a hug if I need it. I can act stupid in front of those friends and know they're laughing with me, not at me. I'll be there for them if they need me, and I know they'll forever be there for me. I may have had to go through a horrible time to find that out, but you know what? I wouldn't change it. It's made me realise what friendship is really about, and I know that a real friendship takes hard work, but it's worth it in the end.

It's horrible how chronic illnesses change your life ( & your outlook on life), but perhaps it's also a good thing. I've got a bunch of friends for life- how many people my age can honestly say that?

Do I get a certificate?

2010-03-13T20:27:00.009Z

Is there an award ceremony? Do I need to find a hot guy to bring along to it? More importantly, do I need to buy a new dress? Even more importantly, do I need to buy new shoes?
I ask all these vital questions because Kayla nominated me for an award! Before you read what the award is about and who I have nominated, go check out her awesome blog (then come back to mine!).
The Happiness Award

The rules:
1.)When you have received this award you must thank the person that awarded you this in the new post.
2.) Name the 10 things that make you happy
3.) Pass this award onto 10 other bloggers and inform the winners

10 Things That Make Me Happy:

Getting post. Any post. I don't care if it's a bank statement or a letter from a charity demanding money off me. I love getting post. It cheers me up- someone in the outside world knows me!
Seeing my friends. They make me forget I have CFS and just make me giggle.
A perfect cup of coffee (no sugar and just a touch of milk please), or a cup of Green Tea with a slice of lemon.
When my hair behaves- it's wavy and frizzy. And thick. It looks like a mane most of the time, but then for one day during the week it will look fantastic and I will feel like I can take over the world.
Lying on the floor with my puppy and getting licked to death.
Getting a hug.
Finding the perfect pair of jeans (and then buying 3 pairs of the bloody things just in case I forget where I got them from).
Wearing a hat- it makes me think I'm cool (when clearly I'm not!).
Whenever it's sunny out. Sunshine makes everything look better.
JLS. A boy band over here in the UK:

Need I say more??

I nominate:

Quick update!

2010-03-12T15:08:00.004Z

It's Friday! My essay deadline is Monday, but I've given myself a deadline for today. And, no I haven't reached my deadline. I'm nearly there, I promise! I cannot wait for this one to be handed in. It was due before Christmas, but I got an extended deadline for after Christmas. It was completed for the deadline, just needed to proofread and add little bits and my family got some bad news so that went on hold.
Well, the essay didn't go on hold exactly. More like 'let's completely forget the essay and concentrate on other things'... so I didn't hand in on time. Luckily, my uni is fantastic when it comes to extending deadlines for me. So that's why I have 'til Monday to hand it in. 'But you just mentioned it was finished' I hear you cry! Yes. It was. But, I read it over and it was crap. So, I decided to make use of this glorious extension and start again. Perfectionist- moi?! Yeah, bad idea. I should have handed it in and just got a minimal pass on it and then I could concentrate on all the other bloody deadlines I've got coming up... but no. Little Miss Perfectionist had to take over and start it all over again.

If I don't get a decent mark, I think I may go a tad crazy...
(I couldn't find a decent Miss Perfect picture (all I could find was a pageant for little girls... don't get me started on that!), so please enjoy the perfect pigeon!)

I had CFS therapy yesterday (will do a post on that, I promise!) and was given a huge booklet of info. One little section was about personality traits of CFS patients. Apparently, they report the following qualities:

being conscientious
good listeners
busy with many commitments
hardworking
having high standards
a dislike of being ill

Do any of the above sound familiar?? They do to me!!

Right, I'm back to writing my essay. Oh, and if you see me commenting on blogs please tell me to get my arse into gear and get back to uni work!

Blog Carnival

2010-03-08T13:25:00.003Z

One of the members of ChronicBabe thought it would be a great idea to start a carnival for bloggers who write about Chronic Illnesses (yes, it sounds dull but the girls at ChronicBabe so funny and intelligent- if you haven't joined, I suggest you should!). Basically, a blog carnival is were bloggers write about one topic and then one person 'hosts' and has all the links to the blogs on their page. It's a great way to find other blogs (and to also promote your blog!).

Well, Kathy is the first host of our Carnival, so head on over there for a great read!

Quote Me Sunday

2010-03-07T17:05:00.007Z

I had my best friend round last night for a catch-up. It was lovely just having a chat and a giggle. Sometimes I feel like I'm boring, that I haven't got much to talk about. That frustrates me quite a lot. Perhaps it's because my friends are all quite busy, while I'm not so I won't have as much to say. Also, I'm still finding talking difficult. I'll be in the middle of a conversation and forget what I was talking about. I'll forget a word, or I'll be trying to explain something, but it comes out all wrong. I know these are all part of CFS, but it just makes me feel stupid sometimes. I used to be quite articulate (if I do say so myself!) and now... I don't even know how to describe it. I feel stupid sometimes...

I made the mistake of drinking Coke most of the evening and paying for it today. I feel hungover! I just feel drained of energy. I wish I was hungover! Never mind. At least I've had an enjoyable weekend. On Friday, I went round to a friend's house for food and films. We managed to eat a lot of food, but we only managed one film! We watched Final Destination 2. I've seen it before, but I thought I had the disc that had 'choose their fate' (where you choose what happens to the characters), unfortunately it was the third film that had that feature. We had fun watching it. Hopefully we'll do it again soon.

I doubt I'll be blogging much this week as I've got a deadline for an essay at the end of this week. Although saying that, I will probably be commenting on other blogs etc so please leave comments on my blog- I will see them!

Wish me luck!

I will leave you with these quotes that I found on the 'net:

'If that which doesn't kill you makes you stronger- having Fibromyalgia and CFS must make me invincible'.

10 Best Things About CFS:

1. I save money on magazines. With brain fog, I can't remember what I just read.
2. I am a cheap date. No alcohol, no desserts, and I still feel drunk or hungover.
3.On 'Good Days', I feel wonderful. Other people need a much better day to feel that good.
4. I lose weight without even trying.
5. I am easy to find...I'm either at the doctors or at home.
6. I never have to make my bed because I'll probably be right back in it.
7. I have acquired a great lounging/sleeping wardrobe, I rarely get dressed as nobody ever sees me.
8. Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up.
9. I feel smarter than my doctors... all they say is 'I don't know'.
10. With short-term memory impairment, I can hide my own Easter eggs and Christmas presents.

'Warning! I have CFS and if I hear one more person say:
but you don't look sick
everybody gets tired
you're just getting older
if you'd just get out more
if you'd just get more exercise
or offer me any unsolicited medical advice whatsoever, I will not be responsible for my actions!'

I found them on t-shirts and things here.

A Productive Day

2010-03-06T17:20:00.010Z

Today has been a very productive day for me. I've wrote a letter to my buddy ( AYME has a buddy scheme where they encourage members to write to other young people. My buddy is a girl who's severely affected by CFS, so much that she's bed bound. I write to her every 2 weeks or so. I became a buddy soon after joining AYME) so that's all ready to be posted to her on Monday, I have a friend coming round later for a catch up so I've tidied up my room AND I've been doing a bit of uni work as well.

I really love productive days!

I thought I would share a few things that remind me to stay positive. I've found that having a positive outlook on life really helps me. Sure, it's hard when I'm having a bad day but it's good to concentrate and celebrate the things I can achieve, rather than the things that I struggle with.

I wear this bangle everyday. It says Be one with yourself and all things will come to you.

I have a Beckoning Cat (or Maneki Neko, to give it its proper name!) which brings in good luck . I've always wanted one. I finally found one in a little quirky shop. It's quite sparkly and looks pretty when the sun shines on it. I completed a Japanese Film module a couple of years ago and my tutor told me a lot about it.

I also have two Laughing Buddhas (or budai?).

And finally, I have Buddha which sits on my window sill. I went to a Buddhist Temple once and I was told that I should give it offerings, so that's why there are necklaces and things over it. The pebbles in front are from a beach in Cornwall. I went last year (my first holiday in a long, long time) and it was a really relaxing holiday. My Dad and I walked on the beach picking up random pebbles that looked pretty. We've always done that!

So, there's quite a few spiritual items in my room!

Do you have any items that remind you to stay positive, or things that make you smile?

A reflective post

2010-03-01T19:34:00.007Z

Your 21st birthday is meant to be a special one; mine really was. I had the whole family over at my parent's house and all my friends were invited as well. It was a glorious English summer's evening and we sat in the garden until 9pm when we all went into town to hit the clubs and drink. I stayed out 'til 4am. I had my best friend staying over and we didn't fall asleep until 6am since we were talking non-stop about all the fun we had that night. I had high hopes for my 21st year- 2007 meant I had one year left until I graduated! I was going into my final year at university, I had just completed a school placement which meant I was ready to apply for a PGCE, I was going out every week-end with friends, and I was happy being in a long-term relationship.

A few months after my 21st birthday, 2 to be precise, I was stressed out. I wasn't coping well with the Literature side of my degree, and I had exams and essay deadlines that were all coming up, one after the other. I started to feel ill one evening while writing an essay. I thought I was coming down with 'flu. Unfortunately, it was worse. After a few weeks of non-stop sleeping, numerous blood tests, trips to the doctors and aches & pains, I was diagnosed with Glandular Fever. I felt awful. I just couldn't shake it off. I had to leave uni, leave behind the friends I had made. My life was just sleeping, being forced to eat and being quite lonely, to be honest.

In March 2009 I was diagnosed with Post-Viral Chronic Fatigue Syndrome. It was a relief. I finally knew why I couldn't stop feeling 'ill'. The world made sense again!

2010 is a bit like Groundhog day for me. I'm back in my final year. I still have some amazing friends. However, a few changes have been made. I'm now a part-time student, I don't go out every week-end (in fact, it's about once a month. And no, I don't go clubbing!), my friends are now the ones I had from years ago (the ones who were there for me when I was ill) and I'm single. Life no longer consists of sleeping all day, being forced to eat and being lonely. It's now one filled of understanding, of humour,of happiness and an appreciation of life. I may not have the life I thought I was going to be leading back in 2007, but at least I'm starting to feel like I'm getting my life back!

EDIT: I wrote this as my entry for the first edition of the ChronicBabe Blog Carnival (March 2010). For more info, visit Kathy's blog

Pic of the Day

2010-02-28T15:55:00.001Z

Just had to share this funny picture with you all I saw over at Jezebel.

The chewing monster

2010-02-27T18:55:00.004Z

Do you think it was a good idea to get a puppy while having CFS? I think so! My dog died last year, who was my companion through every little thing that went on in my life. Most importantly, she helped me when I was really ill. When I was napping on the sofa, my dog had a nap with me. She would follow me when I went into another room and would just randomly check on me. She was like Nana in Peter Pan, forever looking after me.

When she passed away last year, it was heartbreaking for me. I was 9 when we got her so she was my first proper pet. I didn't think about having another pet... that was until a few months after she passed away, we all realised that something was missing in the house. There was a dog shaped hole in our family.

We thought about rescuing a dog again, and we went looking for one. We were going to adopt a 7 year old dog, but then I had a chat with my parents about getting a puppy. I've no idea why- they're hard work, but I love puppies. They are just bundles of energy- even more so that this puppy is a Lab. A very energetic-likes-to-chew-everything lab!

Well, that energy seems to have rubbed off on me! Perhaps it's because I have some responsibility in my life; I have to think about someone, something else for a change. I've been training her, but I'm not up to walking her yet. I cannot wait for that day! We play fetch in the house, but I can't wait to do it in the park. I suppose that's another goal to aim for!

Just ask me what's wrong FFS!

2010-02-26T19:26:00.004Z

I went back to university last year after taking two years out. I've gone back part-time so everything is easier to manage and it's working out fine. I seem to be handling the work load okay which surprises me sometimes. I thought I would have found it really, really difficult, it must mean I'm better then how I was last year.

Since I've come back after a two year break, it means I do not know anyone at all. Everyone is in their own little groups and there's little old me at the end of the row sitting on my own! You would think someone would at least say hello. No-one has. People are actually forced to work with me. How embarrassing is that?! When I'm put with a bunch of people, I get on with doing the group work and the people talk to me, but I can just tell they want to ask questions. They give me that look...

Did I mention I have a helper? She's lovely. She proof reads my work, helps me with revision and takes notes for me in lectures. She also carries my bags and opens doors for me since I have no strength. I guess my fellow students have realised that I'm a 'disabled' student, yet they are perplexed because:

I can walk
I can talk
I'm quite intelligent
I have a sense of humour

and all of the above apparently mean I don't have a disability. You see, to be disabled you have to 'look disabled' (to quote one person from my class when they muscled up the courage to ask who the person is who comes with me to class). I did tell one group that I have CFS, but they didn't really understand and now ignore me. Yes, they do ignore me. I'm not imaging it- they actually turn the other way when I walk past them.

I would prefer it if someone did ask me what's wrong and then just ask me what did I think of the lecture. Why are they making a big deal out of it? I've done a lot of thinking and although it's a bit hurtful that I go to classes where I'm ignored, I don't think I would want any of them as a friend. It's been nearly 7 months and not one of them have said hello to me. I've tried, but they just give me such a strange look!

My Worst Enemy

2010-02-23T18:51:00.006Z

They're the colour of rage, they some how invite themselves in to my favourite meals, and they really hurt my throat. My worst enemy seems to be the tomato...

I noticed a couple of months ago that I seemed to have a worse sore throat (my sore throat has never really gone away after having glandular fever) whenever I had something tomatoey (is that even a word?). So, I avoided everything to do with them. No longer did I enjoy a pizza, a lovely dish of pasta in a delicious tomato sauce, or a salad with a few tomato slices in it. Even worse, I no longer ate chips with tomato ketchup! I even gave up baked beans and Heinz Spaghetti hoops (a childhood favourite of mine). This tomato fast went on for months until last night. I gave in to the temptation of a tuna and tomato pasta bake. It seduced me! I woke up this morning to a really dry, scratchy sore throat and no matter how many warm drinks I have or other sore throat 'solutions', it just won't go away.

It was well worth it though. I'm thinking of adding items from my 'forbidden foods list' to my life now again since I'm beginning to think life's too short. I've had a sore throat for over 2 years now, and what's the harm of it hurting for a few days after enjoying something? I would rather have a few minutes of enjoyment, then not have any at all (& yes, I expect sexual innuendo comments after that sentence!).

Award Season

2010-02-21T14:21:00.004Z

It's award season, folks! So, it's the BAFTAs tonight, and soon it will be the Oscars. That means it's fitting that there is a Sugar Doll award for bloggers to learn a few things about the people behind the blogs...

I've received one- thanks to Robyn and Shelli!

I'm new to the blogging world, and they have both made me feel really welcome. They both have blogs that are great to read.

I've got to list 10 things about myself... beats doing my uni work!

I decided to go by Forgetful Girl instead of my real name because I wanted to remain anonymous. I wanted to share a lot of things that I may not want to tell my family and friends (and it's fun to have a secret identity!).
I have an unhealthy obsession with reality TV shows. It feeds my nosy side of my personality.I'll watch most reality TV (apart from Katie Price's show), knowing full well that I'm killing off a few brain cells.
Having a sick and dark sense of humour scares my dad, but amuses my mum. It's helped me get over a few embarrassing things over the years (especially when I got ill). I call myself a junkie when I'm taking my tablets and found it hysterical when I had to have an injection in bum at the hospital because I had severe muscles spasms in my back (the after effects of the pain relief was very, very nice!).
I procrastinate far, far too much. I will find anything to do then complete uni work. I hate myself for it- I want to do my uni work but a voice in my head tells me that there is a video online that I should be watching, or I should be playing a game instead. I really need to stop procrastinating. I'm not as bad as I was a few years ago, but I'm still easily distracted.
I'm super, super organised. I make to do lists, I have a big yearly planner with important dates (highlighted of course!), I highlight different things, and I use separate colours- things are colour coded!
I'm interested in politics. I really got into the US elections and I remember first hearing about Obama when I was watching BBC news at about 2 O'clock in the morning when I couldn't sleep. He was doing some speech and I was hooked. I was hoping Clinton would get in, but changed my mind after seeing Obama. I'm jealous that the US has Obama while I'm stuck with two people who have no idea what to do for the country. I hate Cameron, and I don't trust Brown... I'm at a loss who I'm going to vote for. Yes, I vote! I'm always surprised when someone my age says they cannot be bothered to vote... it's shame to say the least.
I'm obsessed with the USA. I have family over there and was meant to go over there when I graduated. I'm still hoping I will. I've been twice and really loved it. I love the positive attitude that most people have over there. Yes, I did the touristy thing (Disney, Universal & Grand Canyon), but we also went to Washington D.C and just walked around the city. I've also been to LA, Arizona and Nevada. I want to go to NYC and Boston next.
I LOVE to travel. I enjoy packing a suitcase and planning a trip. I like being on an airplane or a train. I just enjoy travelling. I wish I could live in a hotel.
I can count my best friends on one hand. They're the people who have sticked by me and I'll stick with them. I 'clicked' with one of them from day on (we were 11) and it was so strange- it was like we had knew each other in a past life. I'm really lucky to have good friends and we aren't afraid to say we hate each other, or love each other!
I paint my nails in bed at night while watching Scrubs or Friends. It's a nightly ritual I have. I don't know why, but it really relaxes me and it's nice to have pretty nails!

Since I'm knew to the blogging world, I don't have many blogs that I follow. Most of them have already been nominated and done their lists. If I pick someone who's already written their list- my apologies!
I nominate:

Treya A really insightful CFS blog
Faye Cavania - a pretty beauty blog

What Really Grinds my Gears...

2010-02-19T14:29:00.005Z

I try to have a positive outlook on life. I've always tried to do that as far as I can remember. I think it was my mum's influence. When I was little she would always say "there's no such thing as can't" when I would say I couldn't do something (how ironic that she still says it to me now- even on my bad days!).

I had a routine appointment at the hospital today. I have high platelets so I have to have a check up every so often I don't think it has anything to do with CFS, but my doctor found out about it when I first got ill with Glandular Fever. I wonder if anyone else with CFS has this problem? I know my CFS is different so some others as it is PVCFS, but it would be interesting to know!

I digress... I had to have a little blood test today which really wiped me out for a bit- as it always does. The nurse, who was taking my blood, asked me what I would be doing after and I just said I'll probably have a little nap when I get home. She's seen me a few times, and she always remembers me. She just laughed and said she wishes she could have a nap and then said it's understandable with me, having Chronic Fatigue Syndrome. Then, one nurse piped up that phrase that really, really annoys me:

"I get tired all the time."

Now, I've had this phrase said to me by some people at uni, a librian and I think also a family member (when I first got diagnosed), and in some ways it's to be expected. You hear Chronic Fatigue and immediately think 'tired'. I get that. It annoys me, but I get it. But, from someone in the medical profession? I would have thought she would have heard of it... maybe I'm just assuming she should have. The nurse at the CFS therapy said that there is no excuse for anyone in the medical profession to not believe CFS is a real condition.That is a lovely thought, but it's a thought. A theory. Unfortunately, it just seems it isn't put into practice.

CFS Awareness May 2010

2010-02-15T17:04:00.005Z

I'm a member of AYME (Association of Young People with ME), a UK charity for young people with CFS/ME. It's just for people 26 years old and younger. They're a really supportive charity; they have a message board for members and another message board for parents and also older members (called LINK). They also have a bi-monthy magazine that they send out to their members with news and updates of members and little tips and advice. They also have special sections for younger members and also Severely Affected Members (people with CFS/ME who are bed-bound) so most people are catered for.

Like most charities, they do something special for CFS/ME awareness week/month. This year they have a theme - Education and CFS. I'm a part-time student at university and before I got a firm diagnosis I struggled a lot at uni (I had to leave in the end, and return last year). I know lots of young people with CFS/ME struggle in education and I hope that AYME raise a lot of awareness this year as just because someone has a chronic condition doesn't mean they have to miss out having an education that they deserve.

There's a blog that is helping to raise awareness on the internet- they do it every year. Let's hope that since CFS/ME has been in the news a lot lately, there will be more people aware of the condition.

What have I done?

2010-02-15T15:34:00.003Z

My background had disappeared! I changed a picture on my right side bar, but now my background has gone. Hopefully I will figure it out. Just wanted to put up an apology for the ugly looking blog at the moment!

I've figured out the problem! I've changed my blog background- what do you think?

Ouchy

2010-02-14T20:29:00.002Z

My legs have been aching for over a week now. It seems different from my usual CFS pains. Normally I get some pain in my joints or my feet and they go away after a day or so. I've noticjed my shins hurt after I have done a bit of walking, especially at nighttime. However, this past week or so I haven't done any walking and one shin really, really hurts. It's not going away with rest, it hurts when I put it up.

I went to see my doctor and he has put it down to CFS. He didn't just fob me off, he examined it and asked me loads of questions. He gave me some painkillers so I can sleep at night. I am starting to get fed up now with it- it really hurts. It aches to just walk on it and it's keeping me awake at night.

Sorry for the moaning post today. It's just one of those days!

Motivation

2010-02-10T13:20:00.003Z

I need my own personal Mr Motivator to get me out of bed in the morning, to tell me to eat, to tell me I smell and get a shower and to get started on uni work.

Mr.Motivator (just to inform those who have not had the pleasure of watching him) is a really cool guy who used to be on GMTV (I think he came back last year), a breakfast show, and do exercises.

I had my appointment with the CFS therapy service last week- I'll do a longer post on that soon- and one of the interesting things the nurse told me was that I am not lazy. I've been thinking for a while that I'm lazy, or that I lack motivation to do things. However, she told me that this is all part of wonderful CFS. Apparently people with CFS lack a certain 'get up and go' that everyone else has. It stops you from jumping out of bed in the morning and makes you put off things. Sounds like a wonderful excuse not to do any work! (I joke) Well, I suppose that it does sound like an excuse to other people, but I liked that the nurse told me. It made me think that I'm not lazy, which is a wonderful thing. I sometimes think I'm lazy or I wonder if my mind is messing with me and making me think I'm ill or achy. All part of CFS it seems. And it's great to get some validation (is that the right word?) on those things from a medical professional.

I need to get started on some uni work. I've got a deadline next week for a short essay. Just need to get started on it...

Two good things

2010-02-09T20:22:00.004Z

LOST IS BACK! I love this show, it's so confusing yet easy to follow. It's a program my family all watch together and we all have our own theories about what's going on. The first episode was really good, I've got high hopes for this series and, although I don't want it to end, I can't wait to see the last.ever.episode! Everytime I see this photo of Locke is just makes me smile.

2. I know it's been on for a while in the US, but we only got Glee over here in the last few weeks. I recorded the first 3 episodes to watch on a bad day. And was I glad that I did that. I LOVE it. It's such a funny show, and the music is fab. I've bought some of the songs to listen to on my ipod. I hated all that High School Musical crap, and I thought Glee might be like that. I'm so happy it wasn't!

Comments, comments, comments!

2010-02-09T20:18:00.002Z

Firstly, a big thank you to Lori (http://livingchronically.blogspot.com/) who pointed out on her blog that she was unable to comment on my blog. I think I've fixed the problem, and would appreciate if someone would leave a comment so I know it's working!

Actually, I would appreciate any comments...!

Secondly, erm... no there's nothing else actually! I'm doing better then last time I blogged (sorry for lack of updates), the only problem I have at the moment now is my legs and feet. They're so sore, especially if I walk and it's keeping me awake at night. I had to take 2 days off uni which is an absolute pain. Hopefully, they'll start to feel better soon.

Just call me Sleeping Beauty...

2010-01-31T16:16:00.006Z

I've slept a lot this weekend, and not just at night. I'm going against all the CFS advice I've been given and I'm having naps during the day and my god does it feel good!!

I was told that having naps will affect my sleeping pattern (it's out of whack anyway at the moment), but I can't help dozing off during the day. My mum says go for it. After all, I'm having a bad day and if my body is saying 'SLEEP!', then that's what I should do, right?

I've got no voice and no appetite (not that I've had an appetite...), I always seem to get a bad sore throat and laryngitis on my bad days, I wonder if anyone is the same?

*Image copyright of DISNEY. I don't own it and don't want to get in trouble so that's why I've put this is small print*

It's caught up with me...

2010-01-30T17:23:00.000Z

I'm writing this on my laptop, with my feet up, on the sofa. I've got a blanket on and I'm wearing fingerless mittens- I'm freezing.

It seems the last few weeks have caught up with me. I'm so achy right now. I've got laryngitis so I can't speak. I'm feeling a tad sorry for myself today. On the brightside of things, I had a lovely nap this afternoon with my dog lying next to me on sofa. She likes to protect me it seems, and she knows she has to take it easy with me when I'm having a bad day.

About time!

2010-01-29T13:04:00.002Z

After nearly over a year of waiting for it, I finally got my hospital appointment this week to the CFS therapy service!

I'm looking forward to it- get to go over my concerns, get to talk to people who specialise in CFS, but at the same time I'm nervous. I always get scared they're going to say I'm faking (even though they diagnosed me), or say they can't help me. Hopefully, they'll have advice on my sleeping. I'm on tablets for my aches and pains, but I think they're starting to not work as I woke up really achy today.

I've got a big questionnaire to fill in for the appointment, so that's going to take a while to get through!

XMRV virus- news

2010-01-28T21:27:00.004Z

I belong to a CFS/ME support group. I haven't been in a while as the last few meetings were just full of older (above 40, it seemed) people complaining mostly. I try to stay positive. I like to get together with other people with CFS/ME to discuss symptoms and have that little reaction of 'OMG, ME TOO!' when something is the same.

I just don't want to spend 2 hours in a room with one person covering their eyes up with toilet roll and a man telling me that I haven't suffered enough, as apparently 2 years of being ill isn't long enough...(I also can't really understand how one of the members ran down the road as if she was at an Olympic event- according to my mum- just before the meeting started when she's apparently so ill she can 'barely move'. I know CFS/ME symptoms vary- but do they actually vary that much??)

Anyway, the whole point of that story was that I've found out from one of the members that there was a seminar by one of the people that led the study of the XMRV virus. It's all on video here, if you want to watch it.

Here's a little info on it:

On January 22, Dr. Judy Mikovits, PhD, director of research for the Whittemore Peterson Institute for Neuro-Immune Disease,* conducted a 2½-hour XMRV seminar in Santa Barbara, CA.

The patient-oriented event was sponsored by the HHV-6 Foundation and ProHealth.com, and was introduced by WPI Founder & President Annette Whittemore.

This highly informative presentation and Q&A cover a multitude of intriguing details and plans that patients & researchers worldwide have been speculating about for months - since discovery of the XMRV retrovirus in ME/CFS patients’ blood was reported last October in the journal Science,** and a later paper by UK researchers published in PLoS One reported finding no XMRV.

(Taken from http://www.prohealth.com/library/showarticle.cfm?libid=15114&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews)

ME/CFS- in the news again

2010-01-28T20:58:00.005Z

So, CFS/ME has been in the news a lot this week and rightly so.

For negative press, the Daily Mail ( who else?) had a lovely poll asking their readers if CFS/ME is a 'genuine illness'. I didn't realise that their readers are in the medical profession!

I read a fantastic article on nursingtimes.net entitled Is the Daily Mail bad for your health? that was a great retaliation to the Daily Mail poll. It was good to know that there are many supporters for people living with CFS/ME and that opinions are changing. There were many complaints to the Daily Mail after that poll, and it was taken down.

There was the sad story of Lynn Gilderdale; a severely affected CFS/ME sufferer for many, many years, whose mother helped her commit suicide. It is a controversial subject, but Lynn had a mum who really knew the effects of CFS/ME and was loving that she would help end a loved one's life. I'm not going to talk much about it (you can read about it here). It must have been horrible, but at least there is now peace for Lynn and for her mum (who was acquitted this week).

Because of Lynn's story, CFS/ME has been in the news a lot, over here in the UK. The Telegraph published this story, of some one's experiences of a family member living with CFS/ME. It's an interesting read. Another story, of a women's experiences of living with CFS/ME was in The Times. And, there was another article about different facts about CFS/ME, again in The Times.

Now, all of these stories have been in the broadsheets (apart from The Mail which is... in a category of it's own), I haven't read a story about CFS/ME in any of the tabloids, apart from the Lynn Gilderdale story (that I recall!). I think all this coverage is fantastic for CFS/ME, as the more publicity, the more understanding it seems of the condition.

A hectic few weeks

2010-01-28T20:49:00.003Z

It's been a busy few weeks for me since I last wrote on my blog. I've had some bad news which meant life was hectic for the past few weeks with most of the family out of the house all day. Losing a family member is hard enough as it is, but I didn't realise how much it affected my health. Since I've been keeping the household running while some of my family members were out of the house, it's meant I've put myself on the back burner. I haven't been sleeping well at all, I keep forgetting to take my tablets and I'm trying to keep positive for the sake of my family, but it's hard work.

Also, I'm now back at uni after my Christmas holidays. I've got 2 essays that need writing but I have been told I now have June to hand them in due to my personal circumstances- which is a load off my mind. I'm trying to get back into the routine of waking up earlier in the morning (I've been sleeping in until about 11ish every morning... no wonder my sleep pattern is out of whack!). It's just been a busy few weeks and it's all catching up with me.

XMRV virus study

2010-01-08T20:19:00.004Z

I've just read an article by one of my fave newspapers (yeah, right!) about the XMRV virus and how some British scientists doubt it is the cause. Read about it here. I'm all for more investigation and I'm pleased that CFS/ME is in the news again as any press raises awareness. I'm not sure about one quote the DM uses though, from a scientist who says they " are 'one thousand per cent' confident in their result." One thousand per cent, you say ? And you're a scientist? Hmmm... that's a tad strange! And I'm not that confident that this study was a good one as it seems that our government isn't that good when it comes to CFS.

I've had to apply for DLA (Disability Living Allowence) and also Incapacity Benefit and I was rejected the DLA one because of one interview I went to and the doctor was horrid. She didn't listen and made it clear she didn't think CFS was real. It's not nice being told you're a faker. I was pushed into applying for both benefits by my parents as I cannot work (and I'm part-time at uni). I would rather be out working and earning my money. I just think my government isn't that supportive when it comes to CFS/ME and this study probably hasn't helped things.

EDIT: Just read an article from The Guardian which is a better read (obviously!)

Sorry if this post is a bit of a ramble and confusing- I'm feeling quite worn out and my mind is all muddled up.

Tonsils out- solved the problem?

2010-01-07T20:26:00.002Z

I had my tonsils out late last year after having persistant sore throats for over two years. It's helped a little bit- my throat isn't as sore, but if I talk more more thant 10 minsutes my voice will start to go. I still get reacurring laryngitis every few months or if I get a viral infection. I got my tonsils out to relieve some of the CFS symptoms- well, that's what they said at the CFS therapy clinic. I won't really know if it's helped yet. My energy levels are a little better- I'm doing a bit more then last year, my good days seem to be levelling now with my bad days. I just seem to have more 'ok' days then anything else.

Rant!

2010-01-07T15:47:00.002Z

The one thing that really annoys me about CFS is that it's an invisible condition. When I'm having a bad day, only my parents see me (since I live with them) when I'm unable to get out of bed or when it's hard to walk. They cook for me when I'm having a bad day (actually, they cook for me on a good day as it's hard for me to lift pans and things). My friends and other family members only see me when I'm having a good day. They don't realise that I've spent the previous 4 days at home-not going out- and that I'm going to have to rest for 2 days after seeing them

They always say "don't you look well!", or "you're looking much better", perhaps I am! But, maybe it's because I make sure I've put makeup on and laods of blusher so I don't look tired. Perhaps because I bother with my apperance people don't think I'm ill? Sometimes I wish I had a broken leg or something instead, something people can actually see is broken. Sometimes it's annoying when someone says 'you don't look ill/tired/etc' and I have to just smile and nod when I just want to shout at them!

2010-01-07T15:43:00.002Z

I try and do some form of exercise everyday. Whether it's just going up and down the stairs a few times, or meeting a friend for coffee and having a little walk, I always find it helps a little to keep everything from not going stiff. Also, it's good for pacing and and my muscles (which are quite weak).

I did a little walking on Monday (15 mins to be precise), and when I came home my shin was really hurting. It's hurt before like this a few months ago when I had been walking so I'm thinking it's connected to doing exercise. It's keeping me awake at night now which is horrible as I really need to sleep. It's a like a dull ache, like someone has kicked me in the leg. I'm just feeling a bit fed up with feeling achy and not getting a decent sleep.

Everyone's different...

2010-01-04T20:33:00.004Z

I think it must be difficult for doctors when they have patients with CFS as there is so much variation with everybody's symptoms!

I went to a CFS support meeting a couple of times (will post on that) and there were people of different ages there. My symptoms are mainly tiredness, aching joints & glands, a really bad sore throat, intolerance to noise (not forgetting terrible memory, word finding difficulties).If I've done something one day (like meeting with a friend for a coffee and walking a little) I won't really feel the effects until 2 days later. The people in the group didn't have the throat problem, or the achyness (is that even a word?!), but did have aching joints.

I guess I can understand why some people find it hard to believe in CFS as it's so different for each person. It's not like a broken leg that someone can see; it's not like a disease which can have a test that has a definitive diagnosis (I know there are markers for CFS, but there isn't one definitive test for it (as far as I am aware)). I'm just sometimes amazed at what CFS does to people!

Relief at last!

2010-01-03T20:35:00.002Z

I was diagnosed in March 2009. My appointment at the Infectious Diseases clinic caused me to feel quite worried and panicy. I remember feeling butterflies in my stomach in the waiting room. I was worried that they would say "nothing is wrong with you, you stupid girl. Stop being such a lazy cow!" I was quite wrong.

The doctor asked me different things about my health before I got ill. He then asked me what happened when I got ill and all the things that were happening to me since then. I told him general things like having a permanent sore throat, feeling like I was coming down with flu a lot. I told him I feel like I can never get enough rest and that it was so hard to walk. I told him I find it hard to have conversations with people because I forget words or forget what I was talking about.

He told my mum to leave the room and he examined me (throat, ears, heart,stomach). He then said that I need to start thinking about myself, that I needed to put myself first for a while. He brought my mum back into the room and told me I had CFS. He explained why it was so hard to walk and explained why I had been feeling so crappy. I started to cry- a mixture of relief and saddness, I suppose; I was relived that I wasn't making myself ill and that finally someone knew why I was ill. I was unhappy because he said that it's life changing- That I had to stop thinking when will I get better and start taking it a day at a time instead. That was quite an important message. He told me that I was being referred to a CFS therapy centre, and I'll be going to an info session in the next few months. I remember coming out of the hospital with my mum feeling like a weight was off my shoulders... I wasn't making it up, and that something was wrong with me but life will get better!

How it all began...part two

2010-01-02T23:24:00.003Z

I was starting to feel a little better in February 2008 (I'm talking a week of feeling like it was starting to go), but then all of a sudden, I felt like crap again. I was sleeping for hours during the day, just sleeping on the sofa.My parents were having to force me to wake up, and eat something. All I wanted to do was sleep. It was as if I was hibenating for winter. I was like this for months, until about July when I was starting to feel good. I managed to go to friend's houses to watch films and even managed a cinema trip and a shopping trip! I was starting to think I was recovering. I was feeling so happy, especially since I was going back to uni later in the year. I somehow hurt my lower back, and that caused what I would now call, a relapse. I couldn't go out as I could hardly walk, was in so much pain and my sleep pattern was out of whack again because of the pain. I went to my GP, who although was very sympathetic, wasn't quite helpful. I went to an osteopath who helped sort things out.

Around November time I was at uni, just managing really. I wasn't attending everything and it was a real struggle. I suddenly got bad pain in my feet and could not walk. I had to use crutches. My GP did not know what was wrong. I was beginning to think I was making myself ill. I had to leave uni. Those months were not good for me. It was a low point. I don't remember much of those months apart from feeling extremely fed up.

In Feb 2009 my mum was doing a bit of reading and came across someone with CFS who was diagnosed through an Infectious Diseases clinic after having Glandular Fever. All the symptoms matched mine and we thought we had nothing to lose. My GP thought it was a good idea and he said that he was thinking of referring me anyway... I don't know if that was true or not!

So, Glandular Fever was the reason why I now have Chronic Fatigue Syndrome. I know a few people who had GF, and they recovered after 3 months, 6 at the most. I just never seemed to get over it. I was starting to wonder what was wrong with me- would I ever get better? Will I ever get back to my old healthy self?

How it all began...part one

2010-01-02T23:00:00.005Z

I first became ill in November 2007, on a Wednesday to be precise. I was typing an essay that was due the following week and I was trying to get it finished as I had a meeting with my tutor the following day to talk about it. I started to get a really bad headache but I put it down to being on my laptop for too long. I went to bed soon after, and began to feel like I was coming down with 'flu.

The next day I woke up feeling fine and went into uni. I can't say how the meeting went as I can't remember it. I was going to meet my then boyfriend for lunch, but was advised not to by my mum as I was starting to feel ill again. I didn't take her advice and went on the train to meet the boyfriend. I should have listened to her, as I began to feel quite ill, and was starting to shiver. I met up with the boyfriend, decided against lunch and went to his place. I fell asleep on the train journey there. When I got to his house, I was feeling like hell. I couldn't stop crying. All I wanted to do was go to bed and sleep. He took me home, and I went straight to bed.

The next day I can't really remember, apart from lying on the sofa while my mum was trying to get an appointment with the doctor. I had the worst headache ever, I couldn't open my eyes- the light was too bright and everything was far too noisy. I had a blanket over me, as I was shivering. Fortuatly, my mum got the appointment and apparently I went straight in to see a doctor- no waiting whatsoever. I don't recall much of the appointment apart from the doctor asking if anybody had come with me. I told her my mum was in the waiting room, and she went out to get her. I thought something serious must be going on for her to do that. She advised my mum to keep an eye on me for 24 hours and see how I was doing.

The weeks after that are a total blur. All I remember is feeling ill, sleeping a lot. It ached to walk even a tiny step. I had numerous doctors appointments. I started to get a really bad sore throat; I could hardly eat or drink. I went on antibiotics, but they didn't agree with me. My parents took me to a walk-in clinic and the doctor there asked if I anybody had mentioned Glandular Fever. She felt my glands that were all swollen and told me to go see my GP and ask to get a blood test for Glandular Fever.

I had the blood test, and had to have it repeated again. Eventually, the test showed that I had had Glandular Fever. My doctor told me to rest and drink plenty of fluids. That's all I could manage anyway. My mum sorted out uni (I had missed several weeks of classes by then), and I was all set to return the following year. Did I mention this all happened in my final year?!
Looking back, I wasn't sleeping very well and wasn't coping well with the workload at uni. I was under stress so my immune system probably wasn't doing its job properly!

I'll continue this story another time- it's a very long tale!

An introduction

2010-01-02T22:02:00.003Z

I was diagnosed with Chronic Fatigue Syndrome in March 2009. It was a relief, to say the least. I became ill in 2007, with Glandular Fever and it seemed I couldn't get over it. I saw a few doctors and my own GP was puzzled. It was a suggestion from my mum to go see an Infectious Diseases specialist to my GP that led to my diagnosis. I'm in my early 20s, and in my final year at university. Before my diagnosis I was trying a few things to get better, but nothing seemed to work. I was angry, upset, frustrated- every emotion you can think of I went through. I thought my life was just going to be me stuck at home, not having a social life, nor finishing my education. I couldn't really find much help on the Internet or in bookshops ( I know now there are plenty of books on CFS!) . I just decided to write a blog on my thoughts, and feeling on living with CFS, and if anyone ever reads it, I hope it helps someone.