Sunday, 18 July 2010

The Invisible Illness

So, I'm struggling to sleep, which often happens.

I have been thinking about a short blog post I read earlier, and since I can't sleep and I keep having ideas going around in my head about writing my own take on it, I thought I'd jot some stuff down.

The original post:

Clicky

Now as much as I'd love to be able to write as eloquently as that, I sadly can't. I don't know why he gets the mental clarity to write like that and I don't... or maybe I just don't have his talent. Either way, JEALOUS. Don't say you weren't warned about how little sense I make sometimes. ;-)

Anyway, yes. CFS/ ME. I has it. *Thumbs up*
I think I've had it since I was 17ish.

What is it?

No one knows what causes it. The symptoms differ for most people. But CFS/ ME is essentially a label for a set of symptoms which plague people around the world, from all different backgrounds and walks of life. I don't like the name of it... CFS - Chronic Fatigue Syndrome - is just plain insulting. It sounds like the issue is purely fatigue. I WISH it was just that, as debilitating as that is on its own. And M.E.? Firstly, that stands for Myalgic Encephalomyelitis which, when you have a brain like cotton wool like most M.E. sufferers, is ironically difficult to spell and remember how to say. Secondly, if you don't put the dots in it just looks like a capitalised 'me', which is confusing ("I have ME" - "you have you? Eh?" - haha). And can also lead dicks like Matthew Wright to quip "haha, no wonder it's called M.E., because it's all ME ME ME" - fucking imbecile. I hope he wakes up with it one day and feels like a turd for ever saying that.

It's extremely misunderstood, stigmatised and most of the time I feel ashamed to say "I... er... have M.E.". If I say that, I usually say it while making inverted commas with my fingers. Why? Because it's literally just a name for a neurological condition no one really understands - it lacks definition in the medical world, let alone our everyday life. But I am embarrassed to say I have it, because of its reputation - people think 'ME sufferer' is synonymous with 'attention seeker', 'hypochondriac', 'lazy', 'tired', 'depressed', 'unmotivated', 'incapacity benefit bullshitter', 'someone who is full of shit', and, according to one of my family members, 'the effects of radiation from modern technology'. Riiiiiiiight. I may be more sympathetic to the latter if any of my symptoms went away when I was away from all technology, but alas this is not the case.

(EDIT: someone mentioned to me the inclusion of 'depressed' there sounding like that's not a valid thing by itself. That wasn't intended - what I mean by 'depressed' in this sense is people thinking that you must be in a depressed mood, and that's why you're tired or don't feel well. A depressed mood is entirely different from the illness depression, which isn't what I was alluding to there. Sorry if that offended anyone!)

Since no one knows what M.E. is, it feels silly to say you “have” it. I tend to use it simply as a label to describe my symptoms as I haven’t found another one that fits them better yet.

I think people assume that M.E. sufferers are essentially Andy Pipkin from Little Britain. They pretend they’re disabled, and when no one’s looking, they get up out of their wheelchairs and run around. Lol, if only :P

As I've alluded to in the title, it's an invisible illness. You can't really see the symptoms - well, correction, all you can see is our reaction to what we're feeling, but not the symptoms themselves. Often we'll look generally rough and tired and "blergh" but that's all you can really see, unless we full on collapse or something. But that's unlikely to happen in front of you, which makes it more difficult for us, as it's just another reason to believe we're making it up :P

Watch this, because it’s FREAKIN’ AWESOME!

SO MANY SUFFERERS have had the above experience with doctors. I know I have. They treat like you like a hypochrondriac/ imbecile/ child/ attention seeker and it's so upsetting.

There is no universal treatment currently. Some people get better naturally, some people have treatments that make them better, some people try every treatment under the sun and don’t get better. Some people try something, get better for a while, then relapse again. There’s no pattern. And every potential treatment is very expensive, so it’s difficult to know which to try, if any, when they could all be useless.

People make jokes. Yeah, it's funny. You've got to have a sense of humour about stuff like illness and whatever. But sometimes it can hurt. When someone says "hah, what are you doing up before 11am?" or "what are you doing awake!?", that kind of thing - yes, it's said innocently and with no bad intention. But trust me, I don't want to be asleep half the time. I don't want to not be able to get up most days. Though for clarification, I'll often have a sleepless night and be so fed up that I'll get up at 6am, and go back to bed at 10am, for example. So a lot of the time I'm ironically up before the people that take the piss of me 'waking up late'. It's all very well to make jokes about laziness, or about sleeping too much, or about being a hypochondriac, but who would choose to actually live like this? To be in bed half the day either sleeping or not feeling like getting up because you're too weak and dizzy and nauseated and tired? I could go on but my point is, this lifestyle is not a damn choice. I have so much I want to do, particularly active stuff. Why would anyone choose a life stuck in the house over getting out, seeing the world and doing things? It's BORING AS HELL. Why am I on the computer half the day? Because I have nothing else to do. I fall asleep after a few pages of a book, even. Facebook is my social life for the majority of the time, because I often can't go out and have a real one. No one wants to have to admit that.

I think YouTube videos trying to raise M.E. awareness perhaps propagate the situation with people thinking we're just being miserable self-pitying cretins. You know, the ones consisting of a montage of really melancholy music, the pictures of people looking tired and fed up, a few token words about what it's like to have the illness. It does look self-pitying and like M.E. is a cult of hypochondriacs. Hats off (I'm not wearing a hat, but still) to the people who make these videos because they do get across a certain aspect of it, and their intentions are to make people more aware of the illness... but yes, it's recently I've realised that maybe that's not the right approach. These videos fail to demonstrate that many of us have a sense of humour, just get on with it, and don't use the illness for attention or to justify staying in bed for that extra hour.

I don't want sympathy, just understanding. I can't speak for anyone else, but I personally can't stand it when people are like 'poor me'. Maybe this blog sounds like that's my perspective but I can assure you it's not, it's just all fact and I'm writing it down for the purpose of clarification and understanding, nothing else. Most M.E. sufferers I know are the most brave, strong people you could possibly meet. I don't think I'd count myself under that (although I am stronger than people seem to give me credit for), but there are certainly many of them. They deserve the credit that they really don't get. People are seen as amazing for coping with other neurological, physical disabilities such as MS, MND, and endless other afflictions... and yet M.E. still isn't taken seriously. Sufferers are just stereotyped and seen as wimps. But to cope so well with what they do is just admirable. So many of them have an amazing sense of humour, brightness, and joy that they bring to the lives of others. AYME (Association for Young people with M.E.) is a community I'm lucky enough to be a part of and its members are just so loving and caring. To have the strength to be that way despite everything is incredible.

I don't know if I'm going to get better, and if I am, when that will be. None of us do. We can't plan for our futures, we can't 'hope' for anything specific in our lives because it might not be possible to do those things. It's such a demoralising feeling and it makes it so hard to motivate yourself in everyday life.

I'm not going to go through my past with this, and I'm not going to tell you my life story. But I want to be a little more open about it, because ultimately it affects my everyday life, most things I do, my ability to socialise, who I am, etc etc etc. I often allude to the illness in my statuses but it never really gets across the whole picture. I don't mention it because I want sympathy, I mention it because I'm honest in my statuses about what I'm feeling and what I'm feeling is mostly connected to what the illness makes me feel physically and mentally.

I would like to clarify a few aspects of it... because I think people who see my statuses must think I'm a raving bloody looney, or have the most random days and friends imaginable. People reading my statuses must be like “what the bloody hell is wrong with her now!?” Hopefully my list detailing some of the effects of the illness will explain some of this.

I hope this isn’t misconstrued as a ‘poor little me’ list. I don’t think that, and it’s not intended to be anything like that. I’d just like to have a place where I can write it all down for people to look at if they want to understand the way I am.

(I doubt this is going to have much logical structure, it's going to be more a stream of consciousness than anything. I don't do logical structure, lol).

My symptoms and how they affect me.

Talk like Yoda do I often. The effects of M.E. are mainly neurological - sadly, that means they affect most of the body. That includes cognitive ability - i.e. thought, language, communication etc. It takes a LOT more effort to spell things properly these days, to get my words in the right order, to remember what I said 10 seconds ago. I forget what I'm talking about in the middle of a sentence. If I tell you a story, it will be the most long-winded crock of shit you've heard in a while. Some days I feel like there is such a thick fog in my head I'm not going to be able to anticipate what I will be doing 30 seconds from now, and the task of thinking what to make for dinner feels like a rocket science mission, let alone actually cooking it. I can't remember the words I want to use. With essays for example - I know I will have a really great concept in my head, and I have the intelligence and vocabulary stored in my brain to express it well - but actually accessing that memory and that information is at times impossible. It's constantly having the word you want on the tip of your tongue but not quite being able to get it out. Cross words are the most irritating activity ever. I struggle to generate ideas, or find inspiration for anything. I feel like a bit of a zombie in cognitive terms. I feel generally 'slow'. I struggle to follow conversation. Before being diagnosed with M.E. (I had it, but it hadn't been figured out yet) I was diagnosed with dyslexia. Did I have dyslexia when I was younger? No. I've always been really good with spelling, words and language. But I've got acquired dyslexia, i.e. it's developed at some point since getting M.E., I presume. It fits in with the cognitive difficulties very well.

Even if I'm having a day of relative mental clarity, that doesn't mean I'm free of physical symptoms. So while mentally I might be able to concentrate on uni work for example, I might be feeling like I'm going to throw up at the same time, or have a really bad headache, or not be able to stay awake, and therefore can't do anything constructive.

M.E. is a hypochondriac's heaven. "I feel sick. I've got a really bad headache. I'm unbearably tired. I can't stay awake. My eyes have gone all blurry. I have shooting pains in my arm. I’m having heart palpitations. My back aches. My wrist hurts. Daylight is hurting my eyes. My legs feel like they have got anchors stuck to them. I'm dizzy. I have a sore throat. I can't stand up without feeling like I'm going to faint. I’m so weak. I can’t walk anymore." you get the picture.

I get colds and feel run down all the time. Especially if I don't sleep. If I don't sleep I'll wake up sniffly and with a sore throat. That part of it doesn't bother me, they're only cold-like symptoms (I would happily have a permanent cold instead of M.E.!), but it's just proof of how easily I get run down.

It feels like my skeleton's too weak to support my body. That just about sums up the weakness part of it.

It varies with everyone. Just today I was talking to a friend with M.E. who had just gone for a run. You might not expect that we should be able to do that, but some can, it's just that they'll suffer for it afterwards. With me, I can't run more than a couple of metres in the first place without hyperventilating, being out of breath and feeling faint. People have different abilities.

I live a vampire's existence. I'm whiter than white. That's a natural thing, I'm naturally very pale. But to be fair I don't go out much or see much daylight either. I sleep a lot in the day and often have sleepless nights, though the two aren't always connected. Daylight hurts my eyes (no, really, I'm serious). I think if I lived in darkness for the majority of the day I'd cope better... but everyone needs the benefits of sunlight or your body's chemicals screw up.

Speaking of chemicals, I have chemical sensitivities. To things I use on my body, and things I put in it. Medication has bizarre effects on me.

I can never predict how I'm going to feel on any given day. Or, for that matter, at any given time. A day can start off okay and end horribly, and vice versa.

You'd think the amount of sleep I get would make a difference... but it doesn't. When I wake up it's like I'd never been to sleep. It's so unrefreshing it's like there was no bloody point in it. But I can't help going to sleep either, even if it is pointless. I can't stay awake sometimes, I physically find it so hard to fight it, my eyes are burning and my eyelids are closing by themselves, even if I had a good deal of ‘sleep’ the night before.

I have to sit down in the shower because I feel like I'm going to faint if I'm standing.

If I get up too quickly in any situation my vision goes for a few seconds and I have to lean on a wall as I feel like I'm going to faint.

I go through phases of having very little appetite and will lose weight... then I'll go through more normal phases. But I never really like food because of the nausea, and because of appetite issues... yet I don't really lose much weight in a 'normal' phase because I can do so little activity.

I feel nauseous and have a headache about 80% of the time.

I get hypersensitive to sound and light. Speaks for itself really.

I have hypermobility syndrome. I don't know if that's related to the CFS/ ME or if the symptoms I get are entirely separate. But essentially I can move my joints in ways I shouldn't be able to. They're constantly clicking, too. They get really sore easily. My hips, wrists, ankles and knees drive me crazy. I'm like 21 going on 80.

I really struggle with stairs. But I am embarrassed about it, so I try and hide it. Going up stairs makes my muscles burn. Same with hills.

I struggle to breathe on exertion. It can come on after 10 minutes or 30 seconds, it varies all the time, but I have an inhaler to help with it. It helps a bit, but it doesn't make it stop. It also makes me really jittery. I have to rest all the time and have loads of stops. Hills have become my worst nightmare. Sometimes I can walk for half an hour, sometimes I can only manage a couple of minutes.

If I overdo it my symptoms can include being feverish, hot and cold sweats, aching everywhere, intense nausea and headaches... in fact I can't be arsed to finish the list.

The muscle aches are often overwhelming.

I sweat so much it's not even funny. I didn't used to be sweaty, that's the annoying thing. But now, I'll walk for 30 seconds and my back becomes a waterfall and generally I'm all clammy everywhere. Yummy.

I don't manage to eat big portions.

I can't write stuff by hand anymore. If I can it has to be short. My hand/ arm aches too much and my hand and fingers will cramp up and they ache so much. Speaking of cramp, my hands and feet get it all the time.

It's often easier to pretend there's nothing wrong than to be honest. Because people misinterpret the honesty, or they misunderstand the illness, or it takes too much energy to explain what's wrong, or it's embarrassing, and you feel judged.

Sometimes my jaw aches too much to eat anything I have to chew loads. I'll do it anyway but it hurts, and it's not nice. Sometimes if I push it too much I end up slurring when I speak because I don't have the energy to move my jaw.

When I'm in the shower my arms feel too heavy to lift sometimes and it's particularly hard to wash my hair. I hate holding the hairdryer afterwards as well because my arms feel too weak to hold it. How pathetic does that sound...

I have random food sensitivities. I can’t drink coffee. Caffeine isn’t the issue, it’s the coffee itself – I can’t even have decaf. Which is REALLY ANNOYING because I love the taste of coffee. If I drink it I get an upset stomach, nausea, cold sweats, headaches, trembling, etc. Sugar seems to affect me more than it used to. I can have a bite of a chocolate bar before feeling sick... then that’s it for a few hours or until the next day. I still eat sweet stuff like biscuits and cake, but not concentrated like in pure chocolate or sweets. Sugar seems to give me the same ‘buzzy’ feeling as when I can’t sleep, but at the same time also a headache, nausea and general ‘blergh’ness. I also can’t drink alcohol. It exacerbates the physical stuff I feel... the fatigue, the nausea, the headaches, the ‘slow’ness, the out of control feeling, the sweating, ... on occasion it can make me giggly which amuses me and others I’m with but it really isn’t worth it considering all the other things I get with it. Then I get the same hangover type feeling everyone else has after drinking, but I get it much sooner, and even if I’ve only had one or two glasses of wine. Does it sound worth it to you?

My temperature buggers up all the time. It can be boiling hot and I can be shivering with cold and vice versa. I can be warm but shivering, cold but sweating.

I swear to god I’m the most forgetful, scatty person I know.

I get muscle spasms. Not particularly often, but a couple of times a day. My arm will just randomly flail out. My leg will fly in the air. I’ll just spontaneously twitch. And every time it makes me jump. Though I always end up laughing at myself. :D

Sometimes I will come across as though I’m drunk. Not on purpose, and not even for any particular reason as far as I’m aware physically. It just happens sometimes, I’m just suddenly more mentally slow than I normally am and slurry and tired so all that in combination makes for a very thick-sounding Charlotte.

I feel like I have a giant permanent hangover. That's the most simple, short way of putting it.

A lot of people, when told that someone has “Chronic Fatigue Syndrome”, will go “yeah and? I get tired too” – no you don’t. Believe me you don’t know the first fucking thing about tired!

I feel like I go on about the M.E. all the time to my healthy friends. I feel so guilty for doing that but I panic that they won't understand why I don't seem with it, why I look down if I do (I'm probably just feeling really unwell), why I'm not very engaged with them (normally because I'm half asleep)... it's like I need to always reel out disclaimers about what I'm like on any given day and I have to explain myself. They never ask me to justify my behaviour or how I'm coming across, but I'm embarrassed that they might think that I would be like that normally.

I'm not going to pretend I was particularly active before I got like this because I wasn't. I couldn't be bothered to do much like any other teenager. But what I do know is that if I wanted to do something I could, and also I wouldn't suffer afterwards. Now I miss simple things like going for a really long walk, going for a run, going swimming, doing anything sporty.

I'm really struggling with uni. Admittedly, I'm lucky to even be at uni when others aren't well enough. But I massively struggle with reading because of the dyslexia issues, and because I get so tired after a couple of pages. I find it hard to take in what I do read, and what I do read is never a lot (and certainly never enough). My version of 'wide reading' consists of scanning a few pages of a few books. Essays are a nightmare. Problems with word-finding, ideas, expressing concepts, thinking things through, conceptualising structure, etc... make it pretty much torture to try and write something decent. My term-time existence consists of uni work, sleeping and feeling crappy. What kind of uni experience is that?

I push myself too hard and I'm always feeling guilty and in denial of sorts about the fact that I haven't achieved what I want to. I never feel like I've done enough. Asking myself "what have I achieved today?" is not even a worthwhile activity, it's just upsetting.

My AYME friends write posts on my wall which to most people must look like the most random things ever. "I walked 20 metres today! YAY!", "I got into the shower with my socks on", etc. Some sufferers celebrate walking a few metres because they struggle to do so. To actually manage it is a massive achievement. We also like sharing stupid little things we've done, i.e. "today I got into the shower with my socks on".

I might come across as anti-social sometimes because I don't go out much. Believe me, that's not choice - and if it is, it's just because my past experience tells me that the best idea is to stay in and not push myself or I'll suffer. I can go out and socialise for about an hour and then I’m exhausted.

I’ve lost the ability to tell what’s M.E, what’s a bug or virus or general illness, and what’s normal. I don't remember the last time I felt normal, or how that felt.

Not being able to sleep is the most irritating contradiction. You’re too sleepy and tired to do anything with your body, let alone anything constructive. But you’re too ‘buzzy’ to sleep - you have this overwhelming desire from the core of your body to be moving, to be ‘doing’ something. It hurts to open your eyes and they’re burning with tiredness but you can’t keep them closed because you just want to open them again. I fidget, because I can’t keep still. Even though every time I fidget it reminds me that something hurts or aches or something is uncomfortable. I’m never comfortable. No position is quite right. I jiggle my legs and my feet and I flail my arms everywhere even though my muscles burn afterwards. I just have this insatiable desire to be moving and to be doing. It’s like the times I can’t sleep it’s my body’s way of saying “I’m BORED of all this sitting around, DO something” but physically doing it feels impossible so it’s like being in limbo, you don’t know what to do with yourself. It’s almost like a swarm of very irritated bees being stuck in a jar. Or being locked in a broken down car – you can’t call anyone, and you can’t get out and walk. You’re just stuck in it with all that frustration of being stuck somewhere you don’t belong and don’t want to be, in something that isn’t working how it should be, and isn’t getting you where you want to go. In fact I think that’s a damn good analogy *pats self on back* :P

On an average day, the contents of my handbag include: a bottle of water (any physical exertion makes me insanely thirsty), ibuprofen, metaclopramide, a cardigan on a hot day, sunglasses (even on a day that isn’t sunny), an inhaler (even though I’m not asthmatic, but just for the breathing issues I get with exertion)... I feel the need to be prepared for whatever my body decides it’s going to feel that day.

I held a small, newborn baby yesterday for about 15 minutes. Each of my arms felt like they weighed about three stone for the rest of the night.

I’m petrified of being in a situation where I’m overwhelmingly tired and can’t get home and go to bed. Sad, but true. I'm also afraid of feeling really unwell, especially really nauseous, in a social situation where I'm trapped and I can't leave. I’ve been sitting in lectures where I just can’t keep my eyes open and am nodding off but painfully aware of the fact that it’s an inappropriate situation to be doing so. The energy it takes to fight that heavy sleep is just too much. On so many occasions I’ve trundled home after a lecture – I’ve bumbled along like a drunk snail, but one with a rocket up its arse - because I can’t get home quick enough to flop into bed and just let it take my weight and my exhaustion.

I lack motivation to do most things because what’s the point when I’m only going to feel physically shit anyway and then have the mental frustration of that adding to my tiredness and lack of energy.

Mental exertion --> physical consequences. You’d be surprised. The more I think the more tired and achey I get. Uni work is a nasty paradox. I know I have to be doing it, I know I need to completely engage with it and throw myself in, but I know that the deeper I get into it the more I’ll suffer physically, the more tired I’ll be, the longer I’ll feel weaker.

If I overdo it my neck and armpit glands swell up and are sore. That’s not when the symptoms start though, it’s just a sign that I’ve done too much; the symptoms are there all the time.

I saw a status on an ME sufferer’s Facebook today which really made me smile. “Q. Is there any time of day during which you can’t sit an examination? A. Yes. All of it.” – that pretty much sums it up.

I HATE people doing things for me, I really do. I feel uncomfortable about it. I don’t like sympathy. I like to get on with things, I like to be independent, I like to do things myself, I don’t like to feel that I can’t do things, or feel restricted. Jon is amazing and I don’t know what I’d do without his help, but I wish it didn’t come to that and I wish I didn’t have to be dependent on his kindness sometimes.

I passed my driving test a couple of years ago (after taking numerous tests because I couldn’t concentrate and kept making silly mistakes and failing). But since passing I haven’t let myself drive because my concentration is that bad, I don’t trust it. If it’s just myself I’m putting at risk, fine – but when it’s other people it’s not fair. I used to really enjoy driving lessons. I got to drive without worrying too much if I did anything silly because the instructor was there with their own controls and could tell me or remind me what to do. But when I’m on my own and it’s left to my own memory to look at road signs and take in what they mean, to focus and not feel sleepy, to do loads of things all at once... it just doesn’t happen, and I’m in a daze doing things on autopilot which may or may not be correct. That scares me.

M.E. sufferers know the meaning of ‘wasted time’, sitting in bed being bored, wanting to do something constructive but not being able to..

When I leave uni, if I’m not any better than I am now, I’m probably going to have to be on incapacity benefit and be bored at home for god knows how long. I can’t emphasise how much I don’t want that - I didn’t go to uni and work hard on a degree just to sit around on my arse, to work part time for the rest of my life, or to do nothing with it, to feel useless and incompetent and incapacitated. I went there to study what I love and to give myself a chance at a career I enjoy. I LOVE being busy, having stuff to do, being needed, having a routine, having a challenge. But that isn’t going to happen any time soon and I don’t see a choice but to stay at home. I couldn’t work full time – and I could probably work part-time just about, but only with things in place to support the fact that I need a lot of rest-breaks for as long as I need each time, that when I need to sleep I need to sleep and find it very difficult to stay awake, sometimes my nausea is overwhelming, sometimes I can’t face light and noise, sometimes my headaches get really intense, sometimes I seem drunk, I can never concentrate... I could go on, you get the picture. But do you know any part-time job that would happily put up with all those things from an employee? I certainly don’t.

I could write so much more about this, I could write and explain more symptoms, talk about more experiences with it, etc. But it’s already too long, and my brain feels like mush (I’ve written this over two days). So I’m going to leave it there.

What I've learned

Despite all the crappy parts, I have learned a lot and been lucky in many respects. I'm certainly lucky to be as healthy as I am in comparison to a lot of people I know who are more severe than me.

Apart from a shitty life, lol, I have actually gained things from having M.E. such as a bunch of amazing friends and acquaintances. I feel blessed that I've met such wonderful people through this illness.

I've also been fortunate enough to learn a lot of lessons, including: just how precious health is; generally what my body’s telling me; just how much difference it can make to say something nice to someone, and to show a little love to people you don’t even know that well; that we should appreciate the small things; that there are some people who aren't worth my precious time and energy; just how strong the human spirit can be and the human capacity for compassion and bravery (not really my own, I’ve just been struck by other people’s); that ‘achievement’ can be defined in any way and can consist of things taken for granted by those with a good deal of health; that I may have less energy than I used to but I have a hell of a lot more love to give from what I’ve learned and the people I’ve met; an awareness of just how judgemental people can be towards people who have a disability and that there is still an unbelievable amount of stigma attached; that life is too short to care what people think of you too much; that people don’t seem to understand that you can have physical problems without being mentally handicapped; that a supportive community is a wonderful thing; that brain fog can create some hilarious situations; I could go on for much longer.

I think even if and when I’m recovered some day, I’m still going to be involved in M.E. charities. Even on days I’m not feeling too bad, I’m thinking about everyone who is housebound or bedbound and counting myself lucky. Even when I don’t know people with M.E. (though I hope to keep in contact with those I do), I’m still going to do my best to raise money for ME charities, offer support to those who are suffering... because I’ve got to know and love so many sufferers and see how awful it is to go through what they do everyday, and I empathise with a degree of it myself. When you have personal experience of an illness like this, I imagine it’s hard to let go and just move on if and when you get better because you’re thinking of those who are unfortunate enough to still be stuck in the bubble.

I hope that if nothing else, this has helped at least one person understand M.E. a little better, and perhaps refrain from judgement when dealing with anyone that has it because it’s really not as simple as you would think from the stereotypes. That will justify the energy it took me to write this. M.E. maybe one of those illnesses you cringe at when you hear it out loud because of the reputation it’s got - but believe me it doesn’t deserve it, and you’d be surprised just how debilitating it can be.

I hope that this has done justice to the M.E. experience, even if it’s specific only to my own symptoms.

I would also like to take this opportunity to thank people for being so wonderful and understanding about the way I am – particularly Jon, Erin, Zoe, Chris (I accidentally left him out before, but he's been just as awesome as everyone else) and of course all my AYME lovelies. :)

Oh, last point: I'm eligible for a free bus pass. I think when I get it, I'm going to rename myself Doris.

8 comments:

VeeVee said...

Hi Chemily,
to be honest, I seriously want to copy and paste this onto my blog or just print it off to carry so if anyone comes up to me I can say "read this" and they get it.
I couldn't have put M.E./CFS any better than how you did and I am proud that you speak out.
It can be so difficult when energy is limited to be able to go into detail just how hard it can be...

hugs to you x x x

chemilyx said...

Thank you so much, that means a hell of a lot :)
You're more than welcome to use it any time you like if it's useful for you!
There's so much more I want to add, so much more to elaborate on, so much to change... but it seems like an infinite task.
So I'll leave it as this for now, but will aim to evolve the big picture over time :)
Thank you for your lovely feedback, I hope it helps you in some way xxx

Bethany Mason said...

I don't think my M.E. is as severe as yours but a lot of what you've written here rings a bell. Not wanting to tell people how I really feel as I don't want to sound whiny and like I'm after sympathy coz in reality that's the last thing I want. And the uni/job thing as well. I'm coping at uni but not really having a student's life as I'm either studying or sleeping and very rarely go out. Thank you for letting me know that I'm not the only one who has to deal with it (I know I'm not but you know what I mean), it means a lot that other sufferer's take the time and energy to try and explain.

Hugs x

Kerry said...

Amazing post. I can relate to everything you've said.

I'm not quite so bad as you (thank goodness as I have a six year old son) but it's not too far off a description of my life. Luckily I only have nausea infrequently and not many headaches (although I had a lot when I first got sick) or food sensitivities but the rest is familiar.

Thank you for such an in depth post.

alicestronaut said...

This is a great post, I'm bookmarking it to send to people when I get THOSE comments. Although this "It's often easier to pretend there's nothing wrong than to be honest." applies a lot to me. Well, the whole post does really, it's exactly how I feel too. Thanks again x

Naomi said...

Hey, I found your blog through ayme earlier. :)
It must have been so tiring to write all that D: I had to read it in two sittings!! But TOTALLY worth every word of it! I can relate to it all, and will certainly be passing it on to others to read :) So true. Thank you.

chemilyx said...

Ahhh thank you so much to you all!
I'm really, really touched that you've read it and understood it - for me to be able to describe it as it is was one of my main aims and for you to say it achieves that means so much.
I'm really glad it can help some of you.
Also, just so you know, I've just edited it a bit and re-organised it so it's hopefully more clear :)
Thank you all again for the lovely support. xxx

jaceatsea said...

Hi Chemily, you can really tell it like it is. thank you for that. But do you know that there is an underlying cause of ME, and that it is a retrovirus, like AIDS?

Just because we've been rubbished and belittled and marginalised for years does not mean we are not sick with an illness that can be cured, or at least held at bay?

Do you know what is happening at the WPI in Reno, or that the Alter paper is likely to go online tomorrow?

Hang on in there, along with me and a quarter of a million people on these British Isles. The truth is out there, and about to land.

http://dreamsatstake.blogspot.com/2010/08/whittemore-peterson-institute.html

http://www.youtube.com/watch?v=GQJ60UdWz0c