Humans of ME/CFS
I had just qualified as a Nursery Nurse when suddenly my world fell apart. I felt so drained, my brain kept closing down on me, and I hurt everywhere. That was in 1997 and since then I have had to change my lifestyle dramatically. From the start, I could not return to work. It took me three long years to get my redundancy money. No one believed me, everyone thought I was just lazy.
Then I used a wheelchair, now I walk as much as I can with two sticks, on good days. I am in sheltered housing and receiving help from my daughter and family. Some days I cannot get out of bed for the pain. It took four years and a private consultation to get a diagnosis because my doctor didn’t understand my problems. I had countless viruses before it happened, was under a great deal of stress working and keeping my family fed and clean and operations which took my immune system down. I was given immunoglobulin injections fortnightly, then monthly for 11 years to build my immune system up again. My doctor stopped them because they say research found they didn’t help. They helped me.
I fought for DLA and got that, but now I have filled in my PIP form and don’t think I will get it back. Any stress, however low level it may be, makes me ill. I have four days out of seven days that I crash but try to keep my levels of activity and rest as equal as I can. This doesn’t always work. No amount of medicine can cure this. Was diagnosed with fibromyalgia where symptoms overlap with ME/CFS. I am told I can no longer call it that, but fibromyalgia is an okay word to call it.
I look well and so people tell me I must be well, but I am not. I get tired very easily, ache all over all day every day, I stumble when I walk, I get what’s now known as fibro fog when my brain decides to close down on me. Concentration levels fall easily,and I have to prioritize my days. And they have put me in the WRAG, and I continue to fight to get into the support group.
Because of this illness, I cannot work and even cooking a simple meal is often just too much for so I then turn to something easy to prepare, best choice cereal and fruit, so don’t always get a cooked meal each day. I get too cold and I become lethargic and the pain is really bad. I play with my grandchildren, and it takes me two days of rest to recover. Even washing my hair in the shower hurts, and I have to rest before I can get dressed. All because I chose to work with children, had flu three times, glandular fever when I was younger and had some operations. I can’t make it stop!!!!