
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...
**gulp**
I am in the process of applying for long term disability and social security. I don't plan on getting either, however.
Welcome to the community! Yes, I remember when I first stumbled on here. It is most reassuring to find others who are struggling with the same bizzzzzzare...symptoms. You are not alone.
Sadly, I have no specific advice or experience in regards to a 14 year old daughter but generally I would say....join the CFIDS Assocication and secure helpful educational literature from them. I found the information most helpful in explaining this condition. Also, try to keep in mind it is the very very rare person who can understand this syndrome....try to have patience with them. I have to remind myself I wouldn't understand if I didn't have it. With most people who do not understand, I don't waste time trying to explain...but with a daughter that approach is less helpful.
Yes. I had to stop working.
RE: Social Security. I applied twice and was denied twice.
Advice: 1)make sure your dr is behind you 100%. If he or she is not, find another dr. 2) Maintain detailed medical records. Detailed.
3) Secure the advice and help of a trained lawyer. The process is an impersonal game. It is designed that way. You, with the mental and physical symptoms of CFS, are participating in the game with a powerful disadvantage. Sadly, I think they know that and use it to their advantage. A good Social Security lawyer will help even the playing field. 4) Believe you have the right to these benefits. You are sick. You have the right to apply for benefits. You paid into this insurance policy and now you need to make a claim. If you crashed your car, wouldn't you file a claim? Similarly, you paid the SS insurance premiums every week in your paycheck (and in my case they were hefty premiums)and now you have the right to secure benefits. The Social Security System, and her minions, do not see it that way....5) Join the CFIDS Association of America...google them they have a website....They have some great documents about filing for Social Security Benefits. 6) Seek advice from someone who did in fact recieve the benefits...a'hem...that would not be me :)
Sorry to wrote so long...I couldn't read two sentences when I was diagnosed three years ago...
Welcome Again --
Andrew
P.S. Life is not over...it has only begun again in a new way.....
I am new too, although I have had CFS for about 14 years now.
Is your daughter a reader? If so, you might want to let her read things like the CDC info, or I would be happy to see if there are any books out there that might help. I read one myself that was autobiographical when I was first dx'd and it was wonderful.
Andrew gave you great advice on the disablility issue. I had a job as a Research Scientist at a large corporation. I did short term, then long term disability. I also went through the SSD process. I was very, very lucky and got through the first time. I attribute that to great docs that believed!!
Welcome again, it has been a long time since I have reached out, and in just a few days I have remembered why it is so important.
As far as your daughter, I have one too. She is older than yours but has had a hard time watching me fall down with this illness. I have found that by letting her help me and delegating things to her that make her feel usefull in my recovery and in day to day life, has helped her. Try not to withdraw yourself from your daughter no matter how badly you feel. This is an isolating disease and a lot of us pull in and cover up. Let her feel how much you need her. She wants to believe she's not losing you to this illness, that's all. Let her help.
I hope I have been of some help to you. Again, welcome to Daily Strength, you will find that here.
Sincerely, Darla