I got carried away with last weeks improvement and have been generally unwell for the last 3-4 days. Very nauseous after taking the mofetil, muscle/joint pain, tiredness, disturbed sleep, muzzy headed again. Was seen in clinic this afternoon by Proff Cramp, who had intended increasing the mofetil, but has decided to leave it a bit longer to see if I tolerate it better. Instead, he has increased the steroids a bit to help me over the immunosuppressant changes (or as the hepatologists like to call them "the steroid sparing drugs")! The bloods I had done on Friday have gone up a bit again, so hopefully the steroid increase will address that. Bloods agin Friday, review again in 2 weeks in clinic.
I am starting back at work tomorrow on a phased return. I had been feeling really positive about it, but have to say my confidence has been shaken a bit by how unwell I have been feeling. I am keen to try to regain some normality and to be distracted from this all consuming condition. I'm so sick and tired of it and it dominating everything I do. I wish it would just go away.... but know that it never will.
Hi penny that is really rotten after things starting off so well for you, sometimes it feels like one step forward and six steps back with this illness, yesterday was one off my worst days for a wee while, had to give in and take pain killers for the nightmare off a headache that I had even getting up through the night to take more, what worries me is I'm no where near starting on the aza yet and if I feel this bad without it how much worse will I feel with it, I also had a why me day but then I have them quite often and it gets me really down when I look around and see such healthy looking People cause at the moment I look and feel like a pile off shi....., started my healthy eating yesterday and it went ok was going to try and get in a bit off exercise as well but that's just not happening at the mo, I hope things go well for you starting back to work and you start to feel much brighter soon, my sick pay runs out very soon so that's another worry as I know I am still unable to return any time soon, take care look forward to hearing how it all goes xx
ReplyDeleteHi, sorry things are still so crap for you. It will improve, and underneath all the misery , you know it will. It just all seems so unfair sometimes doesn't it? Patience is not easy is it? Try to just focus on the good days you get....you are going to still feel like crap most of the time until the bloods get back down to near normal, it's a real shame its taking so long for you. I was quite shocked in clinic when he said mine had crept up a bit (he wasn't bothered though) and psychologically, it's had an impact. Fingers crossed for you as always!xx
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