The Student Room Group

Chronic Fatigue Syndrome/ME

Hi,

This is a bit of a complicated story so I'll simplify things.

I was diagnosed with epilepsy two years ago when I was in year 11. I was doing 13 GCSEs and predicted A/B for all of them. A combination of the epilepsy and other things meant that I ended up taking only three (English, maths and science) and getting 5 GCSEs (two As, three Bs).

I started my AS last September, doing four to start with then dropping to three after about a month. I haven't been 100% fit and healthy since the epilepsy was diagnosed. Things got worse in October last year, I was tired all the time and wasn't attending lessons.

Fast forward several months to Feb this year. I finally saw a neurologist said I have Chronic Fatigue Syndrome.

From my GCSE results I was predicted BBB at A level but got 2Cs, 1E and 2Us at AS. Part of the problem was not being able to keep up with the work because I was hardly in lessons. Even when I was I could only concentrate for a few minutes before I'd start thinking of something else. I also found it difficult to revise. The maximum I could do was two hours a day.

Anyway, I'll give you a run down of my current symptoms (they change every so often). Tiredness is the main one, I can't get through the day without at least two hours sleep in the afternoon. I don't sleep properly, sometimes I'm awake until 5am. The most I get during the night is five/six hours. Quite often when I wake up in the afternoon I can't move my arms or legs, they just go numb. I get pain in my joints and hands which mean I can't write or type. Migraines have increased significantly in the last six months. I've still got the problem of a wandering and confused mind during lessons. I have no appetite which I guess contributes to the tiredness.

My predicted grades are now BDE which is going to affect my UCAS application. My 6th form were lenient last year but they aren't so much now.

So now my mum is trying her best to stop me from going to uni. She doesn't think I can cope living away from home, I won't be able to get up in a morning, I won't be able to keep up with the work, I can't have a part time job blah blah blah. My teacher rang a few weeks ago and she got him onside saying the above and he sort of agreed that I shouldn't go in September.

Revision isn't going well at the moment, I've got eight exams in January (four AS resits, four A2), none of which I think I'm going to pass. Some of my teachers are really helpful and spend time going over things with me. There is one who likes to humiliate me at the end of every lesson by asking me questions that he knows I won't be able to answer.

Anyway, now I've stopped rambling I guess the point of my post is, is/has anybody on here been in this situation? What help could I get from a university? And er... any other advice you could give. My brain has gone to mush.

Sorry for the long post.

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Reply 1
Give yourself an extra year and accept its going to take you longer than usual. Don't expect too much of yourself, just aim to reach your goals over a longer period of time and keep persevering. If you take a year out you can resit one or two exams, and placate your parents and teachers.
I kinda agree with your mum. If you're getting poor grades now, then what's going to stop you from getting poor marks at uni (where the work is harder), unless your condition changes? Why not wait until you've improved, and then you can get the degree you're capable of?
Reply 3
Craghyrax
Give yourself an extra year and accept its going to take you longer than usual. Don't expect too much of yourself, just aim to reach your goals over a longer period of time and keep persevering. If you take a year out you can resit one or two exams, and placate your parents and teachers.


:dito: Don't be afraid to take some time out or go at a slower pace. The worse thing you can do is push yourself and make yourself even more ill. I suffer from ME/CFS myself and I did my A-Levels over 4 years (took a year and a half out between AS and A2 because my condition got worse). I think your mum is right, my condition improved greatly last year i.e. I stopped having naps during the day and felt like I've got a lot more energy and even came off the tablets I was taking for the condition, so I started uni and even now it's mainly a struggle with me not able to concentrate properly and not being able to take in information too greatly, and taking god knows how long to complete essays and what not. I'm struggling now to muster up enough concentration to get them completed on time. So what I'm trying to say is don't rush into anything for the sake of it, there really is no shame at having to do things at a slower pace, it really is the last thing you want to make yourself worse. Trust me, I've been there.
You are far too unwell to go to an average uni.

The OU on the otherhand offer part time degrees over 6 years which you can do from home.
Reply 5
Abigail8727
I also found it difficult to revise. The maximum I could do was two hours a day.


TBH, it's better that you only do a little bit of revision each day rather than trying to do several hours for a few days a week.

So now my mum is trying her best to stop me from going to uni. She doesn't think I can cope living away from home, I won't be able to get up in a morning, I won't be able to keep up with the work, I can't have a part time job blah blah blah. My teacher rang a few weeks ago and she got him onside saying the above and he sort of agreed that I shouldn't go in September.


She's only telling you this because she cares about you. And she'd probably rather that you spent September getting yourself into a situation where you're not awake until 5am and are able to function before you had the problems you are having now.

Personally, I agree with your mum and do think she has a good point.
Reply 6
Thanks for your replies. I do see the logic in taking things slowly and not rushing things. I think I'm leaning towards taking a year out next year if I don't get the grades I need or just defer if I do.
Reply 7
Abigail8727
Thanks for your replies. I do see the logic in taking things slowly and not rushing things. I think I'm leaning towards taking a year out next year if I don't get the grades I need or just defer if I do.

A year out can be a really good thing. So many people go on gap years these days that you needn't worry about being left behind by your peers. You will probably get more out of Uni as it is this way round. The year can be used to enjoy a bit of freedom but also to build on your health, devise strategies and develop coping mechanisms for what is to come. Try not to see it as a negative thing and have the best time you can in the middle of it :smile:
Reply 8
Hi,
I agree with what others have said, that taking a year out could be a good thing to do.
I've had M.E/C.F.S for 4 years now and it took me 3years untill i was able to sit my AS exams.
Are you getting rest breaks and extra time in your exams? As you should be entitiled to them if you have M.E.

Its also worth looking at some of the M.E/C.f.s support groups as they can offer alot of support and advice.

You might have already heard of these but there is:
www.ayme.org.uk -the association of young people with m.e
www.afme.org.uk -action for m.e
www.foggyfriends.org
which might be worth a look,

Good Luck with whatever you decide to do,
Lorna :smile:
Reply 9
Lornz*
Hi,
I agree with what others have said, that taking a year out could be a good thing to do.
I've had M.E/C.F.S for 4 years now and it took me 3years untill i was able to sit my AS exams.
Are you getting rest breaks and extra time in your exams? As you should be entitiled to them if you have M.E.

Its also worth looking at some of the M.E/C.f.s support groups as they can offer alot of support and advice.

You might have already heard of these but there is:
www.ayme.org.uk -the association of young people with m.e
www.afme.org.uk -action for m.e
www.foggyfriends.org
which might be worth a look,

Good Luck with whatever you decide to do,
Lorna :smile:

I got rest breaks and extra time for my GCSEs. I can't remember if I got extra time for my AS exams but I do have some considerations that the exam board will only accept if something happens during the exam.

The school was quite good with special considerations when I was doing my GCSEs. I got extra time, breaks and something else without having to ask for them. When I moved to 6th Form I had to fight for something to be put in place because the 6th form house manager wouldn't do anything, she seemed to think I was putting it on and wanted decent grades in my exams without having to do any work. We don't get on. To be honest, I don't actually know what considerations I have now.

Something I found out last week was that the school only got permission for the considerations a week after my last exam in June. I was told that they already had them in place in April. All because this woman isn't prepared to help me.
Reply 10
Hello, i agree with the gap year advice most people have given here.

I had severe bout of Glandular Fever for all of year 12 and 13 and experienced very similar symptoms to the ones you described (espcially the lack of apetite, i lost lots of weight!).

Somehow, i managed to get decent A-levels and i took a gap year. In that gap year i did NOTHING, just caught up on sleep, relaxed, went on a few holidays (the sun, personally, made me feel alot more well). It did me wonders, because at one time i never thought i'd feel well again. Im now in my first year, and taking a gap year made no difference whatsoever - taking a year out to mend, will only do good IMO.

P.S. If you havn't done so already, get a doctors note and send it to your exam board, they bumped my marks up i think. Also, send a a copy of the doctors letter to all your universities you apply to. (you've probally done this, but im just saying in case:smile:)

Good luck.
Reply 11
I took a letter from my neurologist into school and the examinations officer sent it off to the exam boards.

I haven't sent a letter to the universities but I think my tutor might have put something in my reference, I haven't read what she's wrote yet. My aunty used to read uni admissions so she rang some of the universities to see what allowances they could make. I can't remember exactly what she said but UCLAN said they could offer an alternative form of assessment to exams.

I'm going to Florida in June after exams so I'm hoping that will do some good. I don't think this weather helps things. The dark winter days just make me want to sleep all the time which isn't really helpful when I have exams to revise for.

Anyway, thanks for replying and your suggestion about sending a letter to the universities :smile:
Hi Abigail,

I'm going to agree with what everyone else says im afraid! Firstly, if you send a letter, send it directly to the universities (with your UCAS number on it) rather than via UCAS. This is because UCAS will NOT send it on to the unis, they will simply state that extra papers are available should the institution wish to have a look at them.

It also might be worth not deferring your application, but applying during your gap year, as you will know your grades, but you can also give them the most up to date information on your health. What are you planning on studying? You should take into account the differing requirements of each course. For example, I was meant to be studying Law (20 hours lectures a week) and switched to philosophy (8 hours lectures a week) as it meant it wasnt so demanding, and i could also do the reading in bed if required.

You need to admit to yourself that you need recovery time, i refused to do this and ended up making myself a lot worse. I'm now a lot better than i was, and am in my second year at uni now, but its really hard, and my symptoms are now nowhere near as bad as yours. Also, think carefully about what you want from the social side of uni, because its likely that you wont really be able to have any sort of social life at all, and the isolation that is an inevitable result of that can be much harder than the couse itself.

Sorry to sound so negative, I've just been there so want you to be aware of what you're walking into - Good luck!
Reply 13
Abigail8727
I took a letter from my neurologist into school and the examinations officer sent it off to the exam boards.

I haven't sent a letter to the universities but I think my tutor might have put something in my reference, I haven't read what she's wrote yet. My aunty used to read uni admissions so she rang some of the universities to see what allowances they could make. I can't remember exactly what she said but UCLAN said they could offer an alternative form of assessment to exams.


If you go on to the websites of universities, they generally have quite a bit of information on allowances they can make for students with various illnesses/disabilities. You may also want to talk to the disability support people as well.
Heya

I've had ME now since 2002 when i was 15/16. Its only this year that i feel well enough to think about going to uni and whilst yes in the past it has been a major disapointment you can only do whats right for you and your body. By the sounds of it if your not coping at the moment you may well struggle at uni (I couldn't say this for certain - i've never been!!) But now going at 23 while i feel old and past it i know i'm not and i know i can put a lot more into uni as well. I tend to agree with your mum maybe if your feeling up to it in September start a college course or something for a year and see how you go on from there. That way you may feel you have more independence and haven't completly stopped your studying which would be good for any future UCAS applications. But even if that is too much, don't worry there is plenty of time. please do whats right for you x x x
Reply 15
Abigail8727
Thanks for your replies. I do see the logic in taking things slowly and not rushing things. I think I'm leaning towards taking a year out next year if I don't get the grades I need or just defer if I do.

My sister has CFS. And has had it since she started her A-levels in 1991. So your story is very painful for me to read.

On the upside during the last 17 years, she got her A-levels, got a 1st class degree in Food Technology from Reading (which I understand is a top place for the subject), held down a job for 7 years and then returned to university to do an Msc in Environmental Health in which she got a distinction in her exams. She has now got a job she really likes. As well as having just got married in September to her first and only Boyfriend. So You can achieve stuff.

On the downside she is still ill. And I think she will always be ill. (In my bleaker moments I have been known to describe her as only half the sister she was). Still physically not strong. Still has lots of extra days off ill.

It took my sister 3 years to do her A-levels and that should be your target as well. They were not great results (from memory BCD and this from a student who like you was previously straight As) Missing days from school really kills you: your education has lots of holes in it.
i.e. missing days from work does not screw you up in the same way.

Sorry if this reply is a bit bleak and not much use given it’s lateness. But I think you need to be realistic. You have a serious medical condition that will be with you for the rest of your life. It can be managed but you need to not over do things. So take your A-levels over 3 years (can’t belief that it makes any sense for you to be doing 8 exams this month! Much better to take 2 and do well. i.e. 2 A/B results better than 8 Es!) and think clever: for example When you apply for university look for a course with a year out. (This is what my sister did).

You need to exist in the real world and play to your strengths and your abilities. Focus on doing it in manageable steps (for example why did you start 5 AS-levels when you only managed 5 GCSES?). In Long Term Once you have finished university you will have a skill base that you can use.

What are your objectives: What career are you aiming for? What would you like to study at university and what are your A-levels?

In some ways I think University will be more managable. Much less contact time. Maybe 10/12 hours a week. Hence easier to at least get to lectures. and if you can't then get a friend to record. If you are sensible (unlike 90% of undergraduate students) then you will work smoothly through out the year and avoid the last week cramping approach. i.e. hopefully you will be self-aware enough to realise that you will not be good at that. And at University there is about 2-3 months after end of term 2 before exams. So time to prepare well. I only aim to study for 3 2 hour sessions a day. But I do that consistently day in day out.

But this is all predicated on you slowly down a lot. i.e. more haste less speed. Take it steady and you will get there. I promise. And sorry if this sounds preachy: just that your plight brings back many bad memories for me and I want you to succeed.


All The Best.
Reply 16
Paulwhy

You need to exist in the real world and play to your strengths and your abilities. Focus on doing it in manageable steps (for example why did you start 5 AS-levels when you only managed 5 GCSES?). In Long Term Once you have finished university you will have a skill base that you can use.


Did I write five AS? I meant three.

I don't know why I did eight exams, I just kept agreeing to the resits without actually thinking how many exams I would have. I was surprised, most of them went ok apart from a physics A2 that everybody found hard.

It has been stressful though , I've had a lot of pain in my hands and arms and I've had five migraines in three weeks.

You can probably tell by the time of this post that I'm still having trouble sleeping. I've slept for most of the day and I'm wide awake now.

Thanks for your reply :smile:
Reply 17
Abigail8727
Did I write five AS? I meant three.

I don't know why I did eight exams, I just kept agreeing to the resits without actually thinking how many exams I would have. I was surprised, most of them went ok apart from a physics A2 that everybody found hard.

It has been stressful though , I've had a lot of pain in my hands and arms and I've had five migraines in three weeks.

You can probably tell by the time of this post that I'm still having trouble sleeping. I've slept for most of the day and I'm wide awake now.

Thanks for your reply :smile:

If you get more organised. Try implementing a feasible plan. Then A-levels should be managable. If put yourself under less strain some of your symptons will be less terrible and then you should get some momentum.

What kind of university course are you aiming for?
Did you understand what I said about uni being easier in some ways? i.e. that the amount of contact time required is less.
Hi Abigail! :smile:

I can sympathise, I’ve had it for seven years. :rolleyes: I’m fifteen now and was due to take my GCSEs this summer—but due to unforeseen circumstances I’ve had to defer them till 2009. Initially I felt very upset about this, as I wanted to go to sixth form at the same time as my peers… but over the last few months I’ve come to realise it’s probably for the best. It only puts me a year behind; it could be worse.

It is a frustrating illness… but I’ve sort of had to learn to live with it. One day I’ll be quite well, able to go out to the cinema and have fun, and the next I’ll be asleep in bed all day! I, like you, am a bit of an insomniac.

We’ve tried various things to improve me over the years—everything from Chinese herbs, to allergy injections everything! If it’s any comfort to you, four years ago I was completely paralysed from head to foot. Now I am SO much better! Don’t get me wrong; I still have horrendous days where I feel horrible with absolutely no energy, but there are also days, which are good! I can walk perfectly fine (even run sometimes) and simply act like a normal teen! Four years ago, I would have thought that impossible! There’s always hope…

My Mum is similar to yours in the sense that she constantly worries about my illness, and is always telling not to study too much! It’s difficult to reach a happy medium—but I have to say, I do agree with others on here, your mum does sound like she’s speaking sense (and obviously she cares and is really worried about you).

If I was in your position, I’d enjoy my gap year—don’t think about anything else but relaxing! Spend time doing things you love (although obviously nothing that’s going to over-exert you)—whether that be reading, watching films, or sleeping! Don’t feel guilty about the fact that you’re not studying, remember that this time is your time!

As for cures… well it’s difficult to suggest anything! I used to have allergy injections, which helped to an extent! May I suggest taking fish oil tablets, too! It sounds like a simple thing, but it has helped me tremendously!

I’m going to see an endocrinologist who deals with M.E in about eight weeks (he’s one of the best in the country). He is said to be absolutely brilliant, and I have heard some really positive feedback! I am very hopeful, but we’ll have to see…

I’ll post in this thread to let people know how I get on!

In the meantime, all I can say is big hugs,:hugs: try and keep as positive as possible, and don’t give up. Ever.
Reply 19
The Nightingale
I’m going to see an endocrinologist who deals with M.E in about eight weeks (he’s one of the best in the country). He is said to be absolutely brilliant, and I have heard some really positive feedback! I am very hopeful, but we’ll have to see…

I’ll post in this thread to let people know how I get on!

Yes keep me informed. And hope it goes well.