Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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/ Chronic Fatigue Syndrome Support Group

seeking support!

deleted_user
deleted_user
Hey

I have been suffering from chronic fatigue, muscle pain, concentration problems, temperature regulation and other problems for nearly 8 years, and just last week I finally got my doctor to admit it was probably ME/CFS. He is going to refer me to the specialist but its a 12 month waiting list and I'm at a complete loss as to what to do! I'm in the second year of my doctorate, and I love what I do, but I simply can't carry on much longer - I'm forcing myself to go through the motions at the moment cos I really don't want to lose this opportunity, and I've always pushed myself very hard, so noone ever actually believes how bad I am feeling. Last year I had an immune crash and spent six months going in and out of hospital for various things, and I just can't do that again. I have no idea how to manage this condition, and I know its not going to be a miracle cure, but I need a starting point, and now I need to wait another year to see the specialist!!! I can't really afford provate health care, and the thought of taking a sabbatical from work turns me cold - I'm the sort of person who is much better off keeping busy. I feel so alone, my family are supportive but don't live very close, and I don't know if I should tell my supervisor at work - its not the first time we will have had to have had a 'little chat' this year, i've had a run of bad luck, and I don't want to feel like I'm just taking the piss. Anyone got any advice?
deleted_user
deleted_user
Sorry you are having a rough time and that you had to wait that long for a diagnosis.Did the Dr. give you any meds ie: pain pills or antidepressant medication?Maybe a nother DR. could get you in to rhemetologist quicker.You need to have a DR. that understands this illness as some don't understand what we really go through.It is very important that you slow down a bit and get as much rest as possible.I know thats hard to do but you have to listen to your body and when it says rest then rest.Could you go partime at work and school?Sometimes telling your boss will help especially if you find information and give it to them to read.Lots of info out there especially on the net.Maybe someone can give you a good link to go to. Gentle hugs marilyn
DarlaC
DarlaC
Hi Lauren, sounds like you're a bit overwhelmed right now. Sorry about that. You have come to the right place. I realize that you like to keep busy, but maybe what your body needs right now is rest. You're in the second year of your doctorate. The pressure has to be enormous and with CFS/ME that kind of pressure can be sooooooo bad! Dallas2 had good ideas about going part time if possible to make things a little easier on yourself. Pushing too hard is harmfull. I know this, because I continually do it, then end up in bed for a week! Duh!
It shouldn't take a year to see a specialist. That's awful. Maybe since your MD believes you have CFS you should try and treat your body as though you do. That means you must cut back on your schedule.
I feel so badly for you because you are in the middle of your education, but right now, I think you have to listen to your body. When you get the rest you really need, you will be able to think more clearly and make some decisions. I think I would speak to my supervisor and just be totally honest about what you are going through. You may be surprised at how supportive he/she is. We are here for you. Blessings today, DarlaC
deleted_user
deleted_user
Darla and dallas2 have both given some good advice. I understand how you feel about the pressure of study. I am in in my final year as undergraduate but, as both dallas and darla have suggeted found the only way to continue has been to change to part-time study. There is a lot of help available to students with disabilities. If you haven't already, it would help to chat to the student enablement centre at your university. You wil probably be gien a form to apply for Disabled Student Allowance. Even if you think you won't need a grant it is important to complete this as you will then have an assessment of your needs which will enable your university to put measures in place to help. I understand it can be hard to talk about your symptoms,goodness knows it takes time for all of to accept we have this illness, but talking about it to your employer, tutors and colleagues will help them understand. In the mean time, it is important to rest as much as you can.
Best wishes with everything. Keep looking in at DS, it is a wonderful place to be. we understand and are here for you. Love and hugs xoxoxo
deleted_user
deleted_user
I think all of us with cfs/me etc,likes to be kept busy,you have to listen to your body and do not push yourself,sorry if i'm being harsh.You've already had an episode of an "immune crash",it is a very serious illness,and i would hate for you to be bed bound as alot of people are.I'm sorry if i am being very harsh,i don't mean to be,i wish i had paid attention to what people had told me ,as i may have been a bit better than i am at the moment.Stress is an important factor,it makes everything worse.Some people may advise exercise,they usually call it graded exercise,i have been there and done that and relapsed every time,i know everyone is different,but i know here in the uk,they advise that and cbt,and most people here,condone the exercise theory.Keep me posted xx
deleted_user
deleted_user
You have recieved much good advice. I simply want to add my voice of support. Welcome to the Island of CFIDS. It's not so bad once you get used to all the little obstacles....Do slow down...We are here for you.

Andrew
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