OH…MY…GOD…I am SOOOO P*ssed off and sad and worried!
The first symptom, back in 2014 which eventually led to my MS diagnosis was crushing, crippling fatigue. I coped with it as best I could - but in Jan 2016 I went off sick. Feb 2016 I got diagnosed. May 2016 I had a phased return to work. I worked 5 days per week - 8am - 4pm in an A&E department (secretary not nurse or doctor). I was put on sickness monitoring.
Within a month or so I had asked to reduce my hours so now I work four days per week, 8am - 4pm. Monday, Tuesday, Thursday and Friday. The fatigue was still with me, but I felt that with a day off mid-week it was probably manageable. I guess it was for a time.
However in the middle of last year the “crushing” fatigue came back with a vengeance. I had time off sick in Sept/Oct because I couldn’t cope. When I came back to work I was put on sickness monitoring again. I had tried Amantadine but it didn’t help much. After a real struggle I was given Modafinil to try. For the first few weeks I felt great - my brain was finally alive and functioning and this obviously helped enormously at work.
Now i’m pretty much back to square one - my brain is still awake and functioning - but the rest of me is so, SO TIRED. I have constant dizziness which seems to be getting worse - I have trouble keeping my balance at times. I have pain most of the time even though i’m taking Gabapentin.
I had a lovely relaxing weekend just gone. I felt refreshed and happy. Didn’t sleep well last night cos I was thinking about work this morning. I was ok for the first 30-45 minutes but now I just want to curl up and sleep. I’ve put in a request to drop my hours again so i’ll be doing 22.5 per week, Monday, Tuesday and Wednesday. This constant battle will continue though and I don’t know how i’m going to cope. I know - that with the “welfare” system being what it is, i’m unlikely to be awarded ANYTHING because i LOOK just fine. I can do everything for myself that i’m supposed to do…but I cannot carry on like this for another 8 years until I retire.
IF (and it’s a big IF) I end up going off sick again I do worry that the absence monitoring will escalate and eventually…maybe…perhaps i’ll lose my job.
What the hell do I do if that happens??? I really can’t work like this but I don’t think i’d get any help.
Feel free to chip in with anything but the future is scary and bleak and the present is just awful and i’m feeling sorry for myself.