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Chronic Fatigue Syndrome
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Hope you've found this thread helen and mysti... and any other chronic illness sufferers who want to talk! Here's what I wrote in my last post that got removed for being off topic:
I had a cold over the Christmas holidays and it really knocked me out for ages and I was having a pretty bad time before I got the cold, which didn't help! Wasn't one of the best Christmas holidays ever... wasn't able to walk very well or very far at all.
I was absolutely petrified when that horrible vomiting virus was going around that I was going to get it. If either of us got it, we'd be so, so ill! I hope you didn't get it?! It was all going round my school, but thankgod I didn't get it.
I never actually had anything to do with the NHS before last Feb... was always a healthy little person hehe! I'm not too sure how good the care would have been if we were adults - the Dorset ME service I go to here is for young people, so I have no idea what help there is for older people... let's hope I'll never have to find out because hopefully I'll be better soon! have my fingers crossed for recovering a bit over the summer before Sixth Form starts, but just can't get my hopes up like that.
I lived in both Singapore and America (New Jersey) each for 5 years, so I was pretty foreign to England when I came here! I'll never forget when I said something about pants, meaning trousers, but here everyone calls knickers, pants... so I got an awful lot of strange looks, because the sentence I had just said was ridiculous to English people! haha the embarrassment. What part of the country are you from? North... South?
I got some pretty good news yesterday that has really cheered me up - I got an A* in one of my science GCSEs that I sat in mid-January. But even though the exam marks can't change, but the coursework marks can be changed when they get sent off to be moderated, but I'd have to lose quite a few marks to down-graded. It's really encouraged me - 1 GCSE down, 8 more to go!! How are you doing at the moment? A bit better after the rough time you had at the beginning of the week? xx -
*wanders into the lounge looking vaguely lost and sets up camp under a sofa*
Ugh - I just tried to ignore Christmas this year. I wasn't eating, which made it even more depressing. After all, what's Christmas about if not stuffing yourself as much as humanly possible? Have you tried taking vitamin C to stop the colds? I didn't think it would make much difference because I eat a lot of fruit anyway, but I started taking it when a cold really knocked me over and I haven't had one since, so I'm assuming it's working.
I was pretty much confined to the house when the vomiting virus came round, but I was so worried that one of my parents was going to bring it home with them. They didn't luckily.
Hehe, same. I'd never had anything to do with the NHS for myself before now, but because my brother was ill we spent several years virtually living in a hospital. It was very strange going back for an EEG. It was like visiting an old school, everything seems so much smaller. But really, we want as little to do with hospitals as possible, don't we? That's not to be ungrateful, I'm sure all the doctors feel the same way. You could well recover over the summer, especially if you take the chance to completely chill-out.
Wow, that's so cool. Do you feel English? Or do you feel more like you belong to one of the other countries? Living in Singapore must have been particularly amazing. How can you come back to rainy dull UK after that. What was it like there? Hehe, who was it who said England and the USA were two nations divided by a common language? It's so true.
I'm somewhere in the middle of England. I'm planning to go very North for Uni, probably somewhere like Edinburgh. I did think about going South, it's better weather, but I've always wanted to try a deep-fried mars bar lol. It sounds disgusting, but I think it's one of those life experiences.
Woooo!!! Your first A*! How does it feel? I'm sure it's the first of many. I reckon you deserve it, you've had to deal with twice as much as most people who take gcse's.
Yeah, I'm doing pretty good now. I've had a few rubbish days, but I've had some good ones too, when some of my mates have come over for an hour or two. That was really coo, because I haven't seen them in ages. I'm still pretty housebound, but not bedbound, so we're definitely on the road to improvement!This is a reply to this message.
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Oooh, I didn't realise there were fellow ME/CFS sufferers on here! Hello! Are either of you a member of AYME? Just thought I'd mention it incase your not, cos it's an amazingly helpful charity.
(Sorry for the shortness of this - haven't got the energy/brain power to read & reply properly atm, but I shall do later )This is a reply to this message.
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Ooh! Hello! We've been hiding on the writing board and have just migrated.
I'm a member - I got the first magazine thingy this morning. Seems pretty good - I haven't read it yet.
So Beckila, tell us about yourself (lol I feel like I'm in an AA meeting). We're very glad to initiate you into the blast sickly people club lol.
Helen xxThis is a reply to this message.
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This posting has been hidden during moderation because it broke the House Rules in some way.
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Ah I see, I'm more a resident on the music boards.
(The above removed posting is mine, and I think it's because I was talking about AYME so you'll have to excuse me for not replying to that part of your message!)
Haha, it does a bit! Well, I've been diagnosed for just over 4 years now, though my symptoms came on gradually for quite while before that. I'm much better now than I was at my worst... I'm managing to do 2 AS levels (part time) at the moment.
How long have you been ill? How "ill" are you? (That's an awfully phrased question sorry - hope you know what I'm getting at!)
Becki x
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wow, so you're a real old hand at this whole ME thing. I'm still yet to be properly diagnosed, but I've been ill since the end of September.
How are you doing your AS's? Do you have a tutor or are you doing an online course or what? I have just decided to leave school (I'm currently in my AS year) because I'm too ill to go more than two mornings a week and even that makes me very ill, and I'm trying to work out what to do with myself now. I'm pretty sure I'm going to do a course through the Open University.
I range from about 30-70% on the Functional Ability scale, but I spend a couple of hours sometimes a bit lower than that, sometimes in the evening I can go down to about 5-10% but that's not for too long at a time so I don't really count it. (Besides, 5-70% just sounds stupid lol) What about you?
Helen xxThis is a reply to this message.
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If its any consolation...Im here in school in the sixth form study lounge, making notes on AS history, and dying of some head, ears, nose, throat cant-walk-too-painful cold..........
I have a bottle of ribena on the table in front and a box of tissues...througoughly set up camp haha!
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aww, come right this way. *ushers Pretzal into the sickly people club corner of the lounge*
You need orange juice for that, and lots of it. It's my personal recommendation! :DThis is a reply to this message.
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I guess I am - don't be scared by that though! If you've had it less than a year then you've got a good chance of fully recovering, especially if you pace yourself well (I don't mean to be patronising, but I can't stress that enough - I made myself so ill by pushing myself, due to bad advice from doctors). I know how frustrating it is not to have a diagnosis... hope you get one soon.
I'm doing my ASs at 6th Form... I'm in most of the lessons, and have a few catch up sessions with my teachers. Before that, for my GCSEs, I had home tutors for each subject... but after 16, it's near impossible to get funding. Thankfully I'm just about well enough to do half days at school now! I'll have to be there for 3 years, and still need a taxi to get me there and back, but there's no way I'm complaining.
Sorry you've had to leave school, I know how isolating it can be to be stuck at home all day. You're not alone though. I know a lot of people with ME do online/distance courses... they're good cos you can do them when you have the energy. Which courses are you looking at?
Doesn't sound stupid at all! The thing with ME is that it does fluctuate - though planning ahead, resting and spreading out your activities does level it out somewhat. I'm not sure where I am on the ability scale to be honest, I don't find it especially helpful for the reasons you've said. I'm definately at the higher end though... between 70 and 85 (unless I've really overdone it and then I'm pretty much confined to the sofa watching Friends reruns... it's all my brain can cope with - I know every epsiode by heart due to being ill!).
Becki xThis is a reply to this message.
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Hey Helen and other fellow alcoholics hehe - what you said about it being like an AA meeting was so true Helen. It made me smile which doesn't seem to have been happening much at all atm. Been at school today and yesterday, but felt so awful both days... I'm feeling really sick again, hoping it's just a passing phase. Feeling a bit down today too (so to have something that makes me smile really is a blessing!) I've kind of been told to get a move on to lessons especially English because I'm late for every lesson... mostly because I hate it so much and sometimes I'm late because I don't have the strength to carry 2 folders around so if I have say Geography then English, I go to my locker between lessons. Apparently teacher(s?) complained to my form teacher about me being late, but she was really nice about it. Have no idea what I'd do with a non-understanding form teacher, having her makes life a lot easier.
It's just kind of sunk in that I have my real GCSE French oral a week today and I've done barely anything. Had a practise with my teacher today and was feeling awful and you know when you don't feel well, the last thing you want to do is talk?... let alone talking in French! So was told that I had an awful lot of work to do etc etc. You know when everything just builds up and all you want to do is cry, however baby-ish that sounds, well that's what I had today. A couple of my friends were really lovely though, I'm so lucky to have them!
Sorry, that's definately enough moaning about me! Oh for any other people who are new to this thread, you might find it following thread useful - it was where we were chatting before we pushed our luck with the off-topicness! It will save Helen and I (and mysti when you find us) going through our stories all again.. and don't be put off by the way it's called Creative Writing Coursework, hence why it became very off topic : www.bbc.co.uk/dna/mb...
I know what you mean about Christmas - I've completely lost my appetite. I did when I was first ill but then got it back again, but as the tiredness is continuously getting worse I feel like eating less and less. I can't remember what it feels like to actually feel hungry!
How is your brother now? It must be so, so hard on your parents having him be seriously ill and now you being pretty ill. I'm not saying it's easy for you... but I'm just thinking about parents! I think you said a while back that you were going to have another EEG but this time you would be asleep - have you already had this or are the doctors no longer going to do this test? What about seeing the endocrinologist?
When I first moved back here, I felt like a complete foreigner... but I'm feeling a lot more English now! When I started at my new school here, everyone wouldn't stop going on about how I had such a strong accent. I can't say I noticed that I talked any different to other people (except for some words that have different meanings
) I had to widen my vocabulary a lot when I came here - some words that are used here, I'd never heard of! Can't think of any examples right now... but I'll amuse you with them sometime when they come to mind.
It must have been so good to have your friends round! Were these your friends from outside school? Have the fact that you're leaving school "shocked your friends into sympathy" yet? Glad to hear you're not going downhill anymore, hopefully you're stable or going uphill!This is a reply to this message.
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I pushed myself a lot when I first got ill. I managed to hold out for a few weeks and then just broke down and didn't get up for about a month.
It's great you're well enough to go back to school. It's a pity there's not more provisions for people after 16 who can't go to school. After all, healthy people still get free education at that age, we should too. I'm doing a course on the Open University - a friend of mine did one and they said it was really good and the tutors were really supportive. They're designed to be possible to do while working full time, so it shouldn't be too unmanageable. I'm doing a course in biology and genetics, but that doesn't start until May. So I'm just kicking around until that starts.
Hehe, I do the same, but with Scrubs instead of Friends. I'm addicted. I can recite any episode at all.
I think in general the Functional Ability Scale works pretty well. The main issue I have with it though is that I don't always have particularly bad symptoms at rest but if I tried to do anything more than go downstairs to the sofa I'd be very exhausted, so that means I'm like 40% and 70% at the same time lol. It does help put things in perspective though. Whenever I get to around 40% and start getting all miserable, I remember that there are some people who are at 0% all the time. That would be awful.
Helen xxThis is a reply to this message.
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Awww honey
. I'm so so sorry you're feeling down. It's really not fair for teachers to complain about your being late, they don't understand how hard it can be just to walk a short way. I should ask your form-teacher (she sounds really nice) to talk to the other teachers. She may have done so already, but it never hurts to remind them. Also, what they did for my brother when he was ill was to move some of the classrooms so he didn't have to walk up and down stairs all the time. I don't know whether stairs take you any longer than walking flat, but if they do it might be worth speaking to your form tutor. And if you're getting more ill, take a few days off, please don't try and push yourself, you'll only make yourself worse. I know it's frustrating, but you have to listen to your body. I'll come to your house and tie you to the sofa and MAKE you rest if I have to lol.
Ah, francais. Remember that there's 4 exams for French, so even if you don't get a single mark (very unlikely, you'd have to just not say anything lol) it's still possible to get 75% which is an A usually. So don't stress too much. Besides, hopefully you'll be feeling better on the day of your exam - it may be a good idea to take a day's rest before hand to make sure you're as good as possible.
I actually did cry in a maths lesson a few weeks ago. It was so embarrassing. Especially as I'm the only girl in a class of guys, so they all looked at me really weirdly lol. Still, we're allowed to have times when we feel down, we have a perfectly legitimate reason to. Sometimes I feel a bit guilty for being so down about everything, and then I just remember that a lot of people get much more down about a lot less, so we can feel down without feeling guilty at all. We don't have to be brave all the time. I'm glad your friends were there to comfort you, it always helps to have some friendly faces around when you feel like that.
The loss of appetite is the most annoying thing isn't it? I love food, (I've always been one of those lucky people who can eat and eat and eat and never put on weight). Last summer, I went to a restaurant and for some reason we got an extra meal by mistake. So I ate both of them. Now I can go an entire day on just a drink of water without even feeling hungry. I just forget to eat unless mum reminds me lol.
My brother is more or less better now. He still goes into hospital every few months for check ups and suchlike. He had leukaemia so although that's in remission, he's still suffering from a lot of the side effects of the drugs and suchlike (lol medical drugs, not recreational). But even all of that stuff is pretty much all right now, so it's all good. I know, it is hard on my parents, I sometimes feel so guilty about being ill, because it doesn't seem fair that they have to deal with two ill children when so many never have to deal with any. Oh yeah, the sleep study, I think there's a little while of waiting time for that, but I'm on the list. The endocrinologist looked at the whole cortisol level thing, but said that there was no way to tell whether it was a cause or effect of my being ill, so that's a bit of a dead end.
Hehe I'll look forward to hearing about the words, that sort of thing always makes me laugh. Do you still have the accent or has it faded now?
They were my friends from school! yey! It was so good to see them and talk to them properly. When I was at school I could rarely hold a coherent conversation, but now that I'm not going any more, I don't wear myself out as much so I feel a lot better. Unfortuanately if I try to do much I still end up dead. Still, as long as I don't do anything I feel ok now, which is nice, if a little frustrating.
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I'm feeling a little bit happier today thankyou
... didn't get any complaints made against me today! hehe Well to be honest walking slow isn't the reason for being late most of the time - obviously it doesn't help, but I do tend to put off going to lessons (esp English) by standing next to radiators in corridors for a bit or standing under the hand dryers in the toilets I'm always cold at the moment and classrooms are freezing! Do you find that? I do find walking up stairs very hard - makes my legs ache so much even when I go slowly. That's the only time I regularly get aching legs. I feel so bad when I get people stuck behind me on the stairs but there's nothing I can do about that. Most of my lessons are upstairs - but that's good in a way because once I'm up there I only have to come down for break/lunch and stuff. How do you find walking up/down stairs at home?I've not got many more weeks at school left Yeyy... I'm just hoping sixth form isn't going to be a repeat of this year. I just couldn't cope with that.
I like the idea of not saying anything in my oral! hehe I don't think M.E. sufferers should have to do orals, I mean thinking quickly on the spot isn't on the list of things we find easy! I got pretty high marks in my coursework for French so that takes the pressure off a bit. I'm not so stressed about it now, yesterday was just a build up of many things.
Ugh I hate crying at school. Most of the time it's only with friends, but in a Latin lesson a few months ago it was my turn to translate a sentence and I just felt awful and started crying. I know what you mean about feeling guilty about getting down. I always feel like I should be stronger, but you just can't help the tears sometimes. I always try not to cry infront of my mum though - I hate making her sad.
We're pretty lucky we still live at home - if I didn't and was at uni or something, I don't think I'd ever really eat. Just wouldn't occur to me! I think you said you lost a lot of weight when you were first ill, how's the weight now? It makes me laugh in a strange way, some people want to lose weight and here's us trying so hard NOT to lose weight!
Oh the accent's all faded now I think, but I still find using some words strange. You probably never think about it, but one of the main things I noticed when I moved back here is that people use the word 'well' a lot - in the sense of something being 'well good' or 'well bad'. That word was never used in that context when I lived abroad.
It must be really annoying for you feeling relatively okay at the moment because you're not at school - I know you don't feel well at all, but you know what I mean. I remember every holiday of Year 10 after I became ill, I thought I was getting so much better and then school would start again and I'd feel sick again. Since I've been getting worse though that doesn't seem to happen, never feel like I'm getting better. Fingers crossed for the summer though (and toes and legs and every other part of my body! hehe)
There's actually a meeting at school on friday afternoon about my situation - it's with a lady from the ME service down here (she's an occupational therapist) and with some people from school, like the deputy head, exams officer at school and also my form teacher (her sister had M.E. through GCSE and A-level years so knows all about it and stuff). And I'll be there and my mum. It's to discuss about exam concessions and what's going to happen after Easter (doesn't seem much point in me being there if it's all just revision)... it's all just to try and make my life easier! I'll let you know how it goes.
How're you finding being at home? I'm so glad your friends from school came over - were they understanding? Do you spend a lot of time on these message boards?! I break up for Easter holidays 1 week today! I'm so glad I've found someone to talk to who understands
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Hey,
It's interesting to know there are other young people with these chronic style disorders.
I don't have ME but something sort of similar I guess.
For the last few years I've been physically 20% of what I used to be.
I'd advise all of you to your Thyroid tested, a trial dose of Thyroxine could seriously sort you out. Also if you have had it tested check if it was is the upper limit of the normal range, if so, that could be what's causing you grief.
Love, ish
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Why thankyee haha! Yeah I'm getting the day off tomorrow thank God...I end up taking so many for different things I imagine they will kill me but...so many teachers just glared at me and said 'go home!!!' haha so will not turn down the offer!
Nothing is better than orange juice on a sick day yes yes I agree haha
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Hello everyone and welcome Becki
Ive just returned from a week's holiday to Orlando, Florida with my family. It was organised for me by the Make-A-Wish foundation as my wish was to swim with dolphins. We did that and much more. It was great
Ive just been reading through all the messages, so Im up to date again. Im going to try to reply to the bits I think I can help with and answer the questions directed at me. If I miss anything then just let me know
I agree with you in that I can't praise the NHS enough. Ive been in and out of hospital since I was a baby and have always used the NHS. I have absolutely no complaints. The NHS medical staff have also saved my life on 3 occasions, so Im really grateful to them.
I still don't know what career I want, which is a bit scary as I will have to apply to uni next year. I like the idea of studying psychology at uni, just because I enjoy it, not because I really want a career in that area. Then I would like to couple that with another subject, so I have more options at the end of uni. Im not sure what though.
Japanese is great Yes I do have to write it as well as speak it. Its very difficult, but I do enjoy the challenge. However, because I have missed over a week of school now with my holiday, Im going to have to do a lot of work to catch up what I missed.
I think that's an interesting question about how I got back to being active and Im really having to think about that. Im now 16 months post transplant and getting a lot better. However Im not there yet. I function well at everyday things, but I get very tired at the end of the day and it all builds up until the weekend. I have also lost a lot of weight through being ill (have you noticed that?) and as I was very light before I am now underweight. Even with the help of my dietician I am having trouble gaining weight, so Im not sure how that influences my tiredness. It also means Im often cold.
I don't participate in any sports (it isn't compulsary at school post 16), so am very unfit. I would like to become fitter, but don't have enough energy at the moment. Hopefully if things continue to improve, and I speak to my consultant when I see him in a fortnight, I might be able to start some physical exercise.
Back to the original question, lol. The way I got back to being active(ish!) was by taking it slowly and not pushing myself. At the beginning when I left hospital I tried to do too much and it was just wiping me out. Then I started to just do little things, like getting a pedometer and increasing the steps I did each day, thinking of new places to go (when I was off school recovering) but not going too far or for too long. This worked a lot better for me.
Another thing that helped was seeing a physiotherapist regularly. I hated it at the time and thought it was pointless, but it really helped me. I had been ill and inactive for a long time, then in bed for weeks after the transplant and then in a wheelchair after that. My physio sessions started as soon as they could when I was in hospital and were daily at first. Then they were reduced to every other day. This was aimed at getting me walking again before I left hospital. It also helped increase my core strength, this was poor due to the operation, and my stamina. Then when I got home the sessions were continued locally weekly and then dropped to fortnightly and then monthly. Each session I would do some exercise and then set myself some targets. This really helped to build my stamina so I could walk for longer. This enabled me to go for walks, go shopping etc. And eventually go back to school.
The vomiting virus was a great worry for me and my family too. I don't know how much I said in earlier posts, but my transplant was liver, pancreas and small intestine. If I had caught the vomiting virus then it would have been especially dangerous due to my new small intestine. Luckily my parents were very vigilant with hand washing, so the bug stayed away.
I am from the South East of the country. That's really interesting about American speech as I have noticed that for myself while I was on holiday there. Ive also got a very good friend who is American and we can have some very funny misunderstandings due to the different words used. The other day I had taken some Jelly to school with me for lunch (yes Im odd!) and I had forgotten my spoon. I was telling my American friend that I had forgotten my spoon for my jelly and I got some very odd comments. I couldn't understand it. Then later I was packing my bag and she spotted the pot of jelly. She thought I meant jam! And she thought I wanted to eat a pot of jam with a spoon!
Well done with your GCSE Rosie
Speak soon,
mystiThis is a reply to this message.
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Wow. You guys make me feel lucky! I'm a diabetic, and sometimes I do get really down about it, but apart from on rare occasions (and sometimes early in the morning) it doesn't really affect my physical strength or stuff that I can do. Just want to say how much I admire all you guys for carrying on with education etc when you're having so many health problems (and I really do mean that in a good way!)
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Hello people of this thread! How is everyone?
I'm not quite so full of praise for the NHS unfortunately, but I think that's due to ignorance of ME in general... None the less, it's quite hard to forget being told your illness is all your head, and that the reason you want a wheelchair is "because all your other ill friends have one". (Yes that's right - I wanted to be viewed as a pityful cripple because of peer pressure!)
It's refreshing to read your stories actually, what with you both being diagnosed more recently. Perhaps the message is finally getting through to doctors! Though I still get the feeling that I know a lot more than they do... (If anyone who hasn't heard of ME reads that, they probably think it's arrogance - but hopefully you all know what I mean!)
Sorry I've only managed to skim read of your messages... My most prominent symptoms at the moment, other than the exhaustion, are brainfog and headaches - not the most helpful thing when coursework deadlines are looming..! I just wanted to say that, in my experience, death threats work very well when trying to keep colds etc. at bay (In fact I've recently issued one to my brother as I caught him coughing earlier).
Anyway, must be off. Didn't sleep well last night (not actually due to the ME for once, but because of worrying about aforementioned coursework and exams... I'm sure you understand when I say that I love moaning about normal teenage things for once haha) and have overdone it today so am feeling rather lousy!
(I've just realised how that must seem like a running commentary of my symptoms at the moment, oops! Even though a lot of my friends have ME - as that's how I "met" them - I don't talk about my illness much anymore, so it's nice to have a rant once in a while. Sorry that you're on the recieving end of it though...)
Hope you're all as well as possible.
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Thanks Maggie
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I understand what you mean about coursework Becki. Although Im a lot better now, I do have trouble with my stamina and often feel tired. This makes it really difficult to motivate myself with coursework. Im doing ok at keeping up, but the next couple of weeks are going to be difficult now Ive missed nearly 2 weeks of school due to my holiday. Lots of catching up to do
mystiThis is a reply to this message.
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