Morning,
Not really sure if anyone will be able to help but any advice or experience people have would be great.
I love my job but it’s becoming almost impossible to continue. I have constant brain fog, forget my words and have to read the same sentence multiple times to even try and get the gist of it. I also have lots of spasms, rubbish sleep, fatigue…the list goes on!
I know this is all a cyclical thing, pain = bad sleeping, bad sleep = increased symptoms, increased symptoms = increased fatigue but how do I get on top of it so I can carry on working/living like a normal person in their late thirties?
I’ve tried lots of combos of drugs but essentially they leave me so spaced out I can’t work properly anyway, so now I just have methocarbamol and DF118’s for when the everything is really bad.
I work in communications (you’d never tell with how badly this post is written!) so basically desk bound at home during the day.
Life means I can’t really afford to cut down hours - and on top of that I don’t want to. I genuinely love what I do and find a sense of self/purpose in my work.
However I’m becoming so rubbish at it I’m not sure how much longer my employer will want me (they’re supportive and have made every reasonable adjustment they can but when a manager can’t manage and a communication person can’t communicate, they’re kind of in between a rock and a hard place).
On top of that, after trying my hardest at work all week I then have nothing left for the weekend. I end up doing very little family fun stuff and just try to recuperate from the week gone, to have some energy in the tank for the week ahead. I don’t want to live to work but it feels like that is what is happening right now.
Does anyone have any ideas on how I can get on top of this so I can still function/work 9-5? Two years ago (pre diagnosis) I couldn’t have guessed this is how my life would turn out.
Sorry, that was very long and self involved - thank you to anyone who got to the end.