I had my first check up since treatment. Went to the hospital an hour early, as instructed by my neuro, to have bloods done. There was an hour delay (nothing new there haha) so thought my results would definitely be there for my actual appointment…I was wrong! So I’m not entirely sure how my immune system is doing, or what my t-cell count is, but I haven’t heard anything from my neuro team since, so I’m thinking the results couldn’t have been that bad.
On the plus side I got to catch up with Mark and compare how we were. Whilst in the waiting room met a guy that had just finished Lemtrada (so 5 years on) who was kind enough to answer all the questions I kept on throwing at him. We also had a laugh at how warped our humour has become since being diagnosed with MS, something which hadn’t occured to me before that, but I suppose its par for the course.
Oh, and I was taught how to read a urine dipstick test, so there’s that…
Symptom udate: I am still having headaches which neuro says sound like migraines (which I have had in the past). Still VERY tired, possibly less over the last week, but could be that I’m just getting used to this level. My memory and (spoken) word recall seems to be getting worse and the ability to properly concentrate seems to have stopped for the time being. Altered sensation here and there with a bit of stiffness in my limbs - mainly left side (all happened before treatment too). On a good note, I have finally gotten rid if the cold I had (yay!).
Going back to work has been…um…interesting. Everyone has been so supportive and helpful, but I am just sooo shattered all of the time. I have just finished 3 days with a shift on each and I feel ready to sleep for a week. I’ve got work tomorrow, but then 3 days off thank goodness!
I suffered from fatigue before Lemtrada, but it does seem to have become worse. I was pretty sure this was going to happen, but I was hoping I’d break the rule.
I am managing to work the shifts with little to no issue and am not making any mistakes that I’m aware of, however after the shifts is another matter: I become pretty useless physically and have cognitive issues too (remembering words, concentrating, understanding the simplest of things, etc.).
All of this is expected, but I’m hoping it will improve in the not too distant future!
Thursday just gone was my first day back at work. It was only a 4.5 hours shift and a very quiet one at that, but once I was home my back and legs decided they’d had enough. So I ended up spending the rest of the day in bed, in discomfort. The shift itself was fine though; I was a little more tired than I have been recently, but I was expecting that.
My second day back (a 4 hour shit) was a little more interesting: I spent the last hour or so with a full body tremor. It was only low level, so no one really noticed, but it wasn’t all that fun. I also had to use the inhaler that my neuro team gave me at the start of my treatment a few times as my chest was feeling really tight. I also felt more drained than my first day back, but then that makes sense seeing as how I’d worked the day before too. The first half hour after work I was fine, although the tremor continued, but after that my left leg became oddly painful (possibly the bone pain I was warned about?). That continued until I took some paracetamol and had a rest (not sure which helped more to be honest).
All in all it wasn’t as bad as I’d expected but I did come away from work smelling of anti-bac!
Me: I have tried and tested my physical boundaries for 15 years, I know what I can and can’t do. I’m not a school child any more, nobody can force me to actively and knowingly hurt myself. CripplePunk4eva it’s a revolution I suppose.
Also me: Pain is temporary, the social repercussions of not keeping up and doing your part are not. Sure I can carry that thing as well :)
Just realized I’m never at a 0 on a fatigue scale, at my best I’m at like.. a 1-3?
I always feel like.. kinda dozey? (Like when you get yawny but not really tired) and my legs and arms feel kinda like how they might feel after a workout or smth.
Wack how people just don’t feel at least a little tired.
shadow, ai am begging you to tell me right now that being fatigued at all time is typical. please. because ai am always at least a two.
I hate to be the one to inform you /lh
Most people are at a 0
2. It’s been like that for a year and a half. It was stupidly high but becuase I can’t just say no I had to go to school. Nightmare
Look up Compassion Fatigue. We are getting barraged with so much bad crap that we are developing a condition which, until recently, was mostly found among medical personnel, police, fire fighters, social workers and other people who deal with horrifying things on regular basis.
I’m not looking up shit, did u hear the post
I just completely stopped watching or reading the news and I’m all better. I don’t know shit about whats happening in the world, just like a 16th century peasant in a small french village, and I gotta tell you, I’m doing great!
How can I not even have the decency or energy to at least write a proper, timely response to a compassionate note of moral support from a friend? And when did these insipid, literally-every-damn-day thoughts like “I’m cold/lonely” and “I need a hug” gain the power to alter my physiological ability to function??
just when I feel like I finally have the spoons to catch up on inbox asks, I have a close call almost-encounter with the Abuser and it screws me up the entire rest of the day
