Very hard to study with CFS
Hello all,
I'm new here and my name is Clarence. I am doing a split year for Year 12, meaning that I finish my Year 12 in 2 years instead of two, becuase of my Asperger's Syndrome. I was a very hardworking student, studying an average of 5 - 6 hours a day of homework on top of my schooling, despite only having 2 subjects and usually being one of the top in my cohort.
I had CFS for 6 months, with its onset a month before my end of year exams when I had pneumonia. As a result of this, my exam scores were below my expectations and usual scores, incontrovertibly due to my brain fog, orthostatic intolerance and extreme fatigue. I was extremely disheartened by this for the couple of months that followed.
To add salt to injury, my symptoms were getting worse. I started having painful headaches and not being able to get up from bed for more than 15 minutes at a time. Despite these, I pushed my way through, believing that I can fight it and work hard to finish my one last year. However, when this didn't work out, I signed up for Distance Education. Not long after, I couldn't sit at my study table and concentrate for more than 5 minutes. I had to quit studying.
Now, I am sitting here powerless and frustrated. My friends have all since left school and are now happily studying in Uni - none of them want to talk to me - I can't do any mental/cognitive task, which was the heart of my existance - I am a logical thinking person, whenever I have time, I love to think about Mathematical formulas/equations/theorems and psychology topics. But now, this thinking has been robbed from me. I really want to resume schooling, but I am too tired to do so. I have read stories about how Distance Ed will help a CFS person, but with severe brain fog, how is this possible? Reading a simple book, watching a movie are all tasks in which their degree of difficulty are now analagous to rocket science. Furthermore, everyone around me expects me to be independent, but my parents have to buy groceries and do the housework as I am too fatigued to do those.
I hope this post is not too long, but these feelings have been bottled up inside me since this onset and none of my friends are listening. Even my CFS counsellor seem cold and unwilling to help. How is it possible that some CFS students can continue studying but I can't? I love studying, studying is my life. Furthermore, with my mood problems, depression and a whole range of food intolerances, I do not know how I can persevere on.
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Hi Clarence, Life with CFS is
Hi Clarence,
Life with CFS is not easy, and after the misunderstanding and sceptism you receive from the people around you, the loss your previous levels of cognitive function is the hardest to deal with. It is totally confusing, disheartening and bewildering. Whilst I am very lucky to have a very supportive and understanding partner, not everyone has someone close to them who can empathise with the various symptoms sufferer experiences.
When I first got sick with CFS, my whole body and mind shut down. I remember I could barely string a sentence together and couldn't think of half the words i wanted to use, let alone study or work. As time went on and i slowly became less debilitated I remember thinking how I could handle being physically incapacitated, but being mentally incapacitated was a real blow, especially losing my memory. I did feel like I was losing my mind, or suffering early onset alzheimers.
Unfortunately with CFS, the harder you fight it, the harder it fights you back. All the advice from healthy people around you becomes bad advice, and in the end you have to just listen to what your body is telling you. It can be a very long and difficult challenge to learn a whole new way of functioning physically and mentally. You are forced to be very much in touch with the messages your body gives you, and you need to be sensitive to how differently your body now functions. It seems illogical and makes no sense how your body now responds to activity and any form of effort whether physical or cognitive.
The best advice i can give you is to learn to 'befriend' your illness. It sounds crazy but you need to work with what you have. When your brain isn't working, don't push it, just rest. I think it is common that when CFS first hits you, the symptoms are the most extreme. You might only get 50% better over time, or you might recover altogether- either way, with time you will get better to some degree, and the brainfog won't always be this bad. I am only guessing, but it does sound like you have been living with the CFS for 6 or 12 months?
The important thing to remember is that it seems that people who get an early diagnosis of CFS seem to not suffer the degree of fatigue/symptoms or duration of symptoms that other sufferers who lived for years with CFS without a diagnosis. One would assume this is because they learn to manage their symptoms earlier on in the peice because they know what to do and what not to do, rather than continue to exacerbate their symptoms over a long period of time by overdoing things (sometimes just getting out of bed is overdoing it) Although you are feeling disheartened and confused right now, it's really important to stay hopeful and be very very patient.. don't push things and rest as much as you need to. This way maybe you will be able to recover faster. The longer and harder you fight it or try to persevere through the fatigue, the longer and harder your recovery will be. It's like surfing a wave or a strong tide, always changing, but to keep your head above water you need to ride the wave, and swim with the current, rather than against it. It might be the biggest challenge you face, but patience is something you will need a lot of. I have struggled a lot and have had to learn to be a patient person; but things are not as bad now as they used to be, so things can get better.
Don't lose hope, be patient and forgiving of yourself and try to find other ways to get enjoyment out of life while your cognitive function is on holidays... it might be something as simple as watching the sun setting or the birds flying in the sky.
It's the hardest thing losing your independence and control over your life, especially at such a young age, so it is very important to find a phychologist or counsellor to listen to the difficulties you face and help you cope. Your GP should be able to give you some names of psychologists in your area, and hopefully some information about their specializations so you can try to find one who understands chronic illness and it's impacts. It is probably a good idea too to attend support groups and get to know of other people with CFS so you don't feel so alone. Maybe you will find some good strategies for managing CFS from these people, as likely they have all experienced similar challenges as you are. It is also important to find a good CFS specialist to give you guidance and support as not many GP's know too much about CFS. The society can help with names of specialists.
Don't give up hope Clarence, and keep in touch with the society if you need help through this.
Hi Clarence, Welcome to the
Hi Clarence,
Welcome to the forum. I've been on here a couple of years, when I joined there were a lot more people on here, now it seems that hardly anyone writes anymore. I'm not sure why this is, perhaps there is another forum that I haven't discovered?
I've had fibromyalgia/CFS since about 2004 quite badly, and on and off (but not so badly) for most of my life. I know how frustrating it is when you can't do things like study or work and also how so many normal healthy people dont understand what it is like at all. For about 2 years I have been going to support groups on and off and getting to know other people who have it which has been a really good thing to do.
Depending on how bad I am sometimes I can study, Ive done a bit of study mostly by distance education. I couldnt have done that when I was really bad though. My worst problem is the fibro, especially in my low back, which makes travel hard, distance education means almost no travel and also without a formal timetable you can study when you are feeling up to it.
It hard but I've learned that its important to pace myself and not do too much. This is hardest of all when my health goes backwards and I can't do as much as what I could before. When that happens there is really nothing else to do but do less and try to be as ok with that as I can, knowing that I will recover (at least somewhat) and be able to do more in the future and be in less pain.
My life now is a balance between doing the things that I know will improve my health (like lots of rest and certain types of exercise and nutrition, not being in a hyped up / stressed state of mind, etc) and doing things that I want to do (normal things like work, study, go out etc). If I do too many things then my health gets worse and I have to back off for a while and I get really frustrated, especially at first, then I get more used to it and do what I have to do to lessen the pain.
When I first got sick, and even now (but not as much now thankfully), a lot of normal/healthy people seemed to think that all I need is some encouragement/"motivation" to do more and then I will get out of my "rut". But I have found that is pretty much the complete opposite of what is helpful. The more I try to do more things, the more I get frustrated, stressed and go backwards - but the more I learn to accept how I am (however good or bad my health may be any given time) the more I seem to improve, and then am able to do more.....
Recovery, study etc
Hi Clarence,
I'm sorry to hear you have CFS, and with your Aspergers, I know how much you are missing studying.
I too have CFS and love to study/read and play the piano. I was very, very ill with a virus which began my CFS, unable to read more than 3 words to begin with, and not able to walk more than the length of the house. I am in the bottom 2% by severity but get a little better each year.
1.You are going to need patience with your self to overcome this, and patience to learn to live with it for a while.
2.. Members of your family who accept your condition are your friends, and can assisst you the most on a daily basis. Stay away from anyone who doesn't believe how severe your illness is.
3.You need to accept that for now, you can't do those things you love - difficult, but the only way to get better or get substantially better. It's the only way to get back to what you love in the future.
4.Your body will tell you what it can and can't do. "Listen" to what your body is telling you. If you try to do more than you are capable of at any given time you will get worse. If it's just a small amount more than you are capable of you will relapse for a smaller time. If you do a lot more than you are capable of you will relapse for a long time - months or years. You cannot beat this illness by will power. You have to give in to it and "go with it". Learn what your body and brain can cope with now by trial and error, and when you're aware of what makes you go back wards, don't do it at all till you feel somewhat better. It's progression in little tiny steps that will get you through this.
5.CFS seems to affect the hypothalamus, with consequent challenges with concentration, getting short term memory into long term memory, retrieving words, sentence construction, some other things, and for me retrieving long term memory and memory of basic arithmetic and memory of maths.
6. Each of us varies a bit. Some have Fibromyalgia as well with muscle and joint pain. It is a complex illness.
7. You need a doctor who understands CFS.
8. Stop watching news or reading newspapers. too negative and takes too much concentration.
9. Increase what you do by tiny steps, never increasing anything bymore than 20%, and no more increases in under a month. Only increase 1 thing at a time.
An example:
When I could read a little again, I lay in bed with a small thin lightweight fictional book that took little concentration. Being older and female I began with small fluffy romances - I'm not sure what the equivalent for you might be - maybe Star trek novels. I would lay on my back, read a paragraph, lay the book on my chest and sleep for 15-30min, then wake and read another paragraph ( all I could do). Gradually over time (weeks and months) the amount I could read increased. Over a few years I was able to increase the difficulty of the book but had to stay with fiction. Then I began adding non-fiction with pictures, only looking at the pictures. Another few years I was able to read a paragraph of non-fiction and can now read a chapter or two. I was not able to watch TV at 1st, but can now watch a 1/2 to 1 hr documentary as well as fictional stuff.
My local library is my very best friend!.. Ask about delivery of books and talking books to you. I now use talking books on CD and tape cassettes - with Cassette player from Vision Australia, about $70. The town libraries also have MP3 books now, which are used with headphones.
10. When you can, only use your sight to read for e.g. 15min, then switch to listening for 15 min etc. so no area of your brain gets too tired.
11. Many CFS people need medication to have a normal day-night Circadian Cycle.
12. I suggest that knowledge about CFS is the 1st lot of studying you should do, when you are able to. Till then, your parents need to learn about this.
13. Try to think of things you may have thought about doing but haven't done before e.g. drawing or painting, writing poetry or prose. i.e. something creative - it helps to keep you positive and give you a sense of achievement. It can be very small at 1st, give you something of interest and helps balance your emotions.
14. Emotional consequences of having CFS take getting used to and takes a little time to come to terms with. It is normal for anyone with a long term, life changing condition. Be gentle on yourself. Some of us need a small dose of antidepressant.
For me, I use gratefulness. I am grateful that I live in Australia, with good living conditions and good medical system. CFS doesn't recognise geographical boundaries. I am grateful i don't live in e.g. Africa with my CFS , with my children dead of HIV and trying to feed 4 or 5 grandchildren on my own. That is the reality for some people.
You will find your way Clarence. My very best wished and prayers go with you.
Lucy