David’s Story
As far back as high school, a residential school for the blind, I felt Lazy,–easily tired. I just figured I must be as lazy as some people implied. I often would fall asleep, and just doze off in class. I’d be up at 6:45 and in school by 8:00 but by 9:30 am, I’d get tired. Sometimes, in the afternoons after about 2:00 I’d get sleepy again.
I worked for a time as a medical transcriptionist. It’s one of those jobs blind people seem to fall into. I noticed quite often that I’d suddenly become sleepy and exhausted. I had a neurological evaluation to rule out narcolepsy and sleep apnea. I had to resign from my transcriptionist position but I still thought that if a had a better sleep routine, things would improve and I would be able to work.
I tried another job–this time teaching Braille. It was a part-time job and I could just about manage it. However, the stress of a supervisor caused me to leave after two years.
I attended library school and was often sick, tired, and very stressed. It was not a supportive environment and even my guide dog suddenly died from cancer one evening while I was at the library attempting to find work in my field but I was unsuccessful.
In 2004, my brother, hearing some of my health complaints thought I had fibromyalgia syndrome, -I exclaimed that was not possible as that is a women’s disease., I saw a rheumatologist who tentatively diagnosed me, after the appropriate blood tests.
It’s been a crazy game after that. The diagnosis is bizarre because it’s more a ruling out of things, not a test that says, “Oh, you have FMS” though I understand there seems to be some sort of test in the U.K. for it.
Being totally blind, I certainly did not need this as well. It’s exhausting and trying to handle it and blindness is ghastly!! Blind people are taught that we should be independent and that can be hard when you have a chronic health condition.
I did some online research and found newsletters put out from theFMS-community which outlines the ups and downs of this crazy syndrome. I have also have talked to the people in the ME/CFS community which was very helpful in coping techniques.
I live on a very limited income so don’t have the big amounts of money many practitioners require to treat FMS/CFS. I have tried water exercises and physical therapy. One physical therapist actually toldme he didn’t think I had FMS because I did not meet the characteristics i.e. fat, female, forty-something, fatigued, and frustrated. I was not amused.
I have not ever found that physical therapy was really good. All the bending and pulling is very painful and I never seem to become any more flexible. I see a chiropractor but can’t say it’s helped greatly. I may consider an acupuncturist again, but am not sure about that. I also take anywhere from 45-65 pills or tablets or capsules a day when I can afford them. Ithink some help, I notice something when I’m not taking them. I have to label the many bottles in Braille so I know what is what. Some help would
be nice but when I applied for a PCA, I was declined because I didnot meet the criteria.
At present, I am just trying to live a meaningful life and not hate this syndrome for taking what I could expect to accomplish away from me. The complicated treatment protocols, the different strokes for different folks ideas, confuse me at times. The brain fog, the tiredness, the anxiety and jitteryness are soul-numbing.
In 2008, I suffered a severe fall from a third floor fire escape. I had become extremely disoriented while taking a 13-day prednisone taiper prescribed by a walk-in clinic for a dramatic rash I suddenly caught. I badly hurt my lower back, fractured my pelvis, and even hurt my tailbone. I am still in pain and think the FMS has negatively impacted my ability to heal. Added to this, the doctors’ seeming indifference to me, and I just get so disgusted, I could stay in bed and never come out again.
A friend has told me about the raw foods lifestyle. I am going to watch to determine how she makes out because I sure need to do something. I feel like life is just slipping away and I am slipping slowly down the path toward more disability and breakdown!
I live alone in a subsidized apartment, use Medicare for my insurance, and just get so lost and feel purposeless at some times. I am one of the few totally blind people I know who has a MLIS or Masters Degree in Library and Information Science but can’t use it, can’t give back much, have to spend most of my time, remembering what not to do:
- Don’t do too much;
- Don’t overdo it:
- Don’t get too excited;
- Don’t get too anxious;
- Don’t get too manic,
And to remember what to do:
- Maintain a standard bedtime;
- Eat good food; and
- Explain to any and all people who won’t understand it anyway what FMS/CFS is.
They think I am just a supplement-taking nutcase!
I wish I had found a niche and had one thing that I was amazingly good at. One thing, I could do for say 3 or so hours a day and make enough money to live well on.
I feel so suddenly tired and exhausted.
David F
Louisiana, U.S.A.
