I originally posted this in the Young People forum, however I was told it’s relatively unvisited and suggested repost here, so here goes
Hi, everyone. I’m completely new here, so I’ll just drop an introduction.
I am Nero. I was diagnosed in 2010, and the type I seem to have is relapsing-remitting. I started with my left side of the body having pins and needles and numbness with a millimeter precision. It went away after a while, but I still have a remnant - little finger and left half of the ring finger of my left hand are still that way even now, 3 and a half years later.
I was treated with Copaxone (dreadful side effects 50% of the time) and later on Avonex (but spending a day every week feeling like I had flu wasn’t fun). Either way, I dropped the treatment and my condition has unchanged, other than something that kept changing even on either of them - fatigue.
I haven’t really had any real relapses recently - I started off with a few episodes of numbness and an episode of optic neuritis but what’s happening is more terrifying than either of those.
I experience fatigue - less so physical one, more so mental. My brain just shuts down, I stop processing information and it’s just gotten worse and worse - it usually happens during the second half of the day, around 3-4 and lasts several hours (I can gather some energy over half an hour for a small burst in the meanwhile), but it’s really difficult. I’ve been able to manage back in my birth country by going to work by 6 leaving around 12 or 14 (so I get a few personal hours in), and then just sulking and doing things you don’t need to think about, like watching sitcoms and… forgetting all about them later on because storing information becomes complicated. I’ve been edging on the still-tolerable and ‘gone’ level for the entire duration of writing this post.
I think I’ve been hit by it hard - I’m a software engineer by profession, which makes it so difficult, especially now that I moved to UK and it seems it’s common for people to work from 9 to 5:30… meaning if I want to clock hours, I need to sit at work and be completely useless for anywhere between 1-2 hours (it can kick in rapidly and take an hour or two to progress). I just finished a talk with my boss, and he reckons management might need somesort of certificate from doctor. I visited a surgery the other day, and supposedly they sent my details to the Western General Hospital in Edinburgh (I live here now), so I need an appointment soon.
However… it’s difficult. It destroys my personal life and interferes with work, too, even though the possibilities are there to be flexible.
So what I really am after, I guess is… has anyone else been experiencing anything alike? How did you manage it from a 9-5(:30) work? How did it affect your life? Possible suggestions of things in the UK?