I am having one of those weeks where all the days seem to have merged into one. I can’t believe its going to be Friday tomorrow. Its seems like since last Thursday all I have done is sleep and stay in bed. I am walking around with my eyes closed as the house is crying out to be cleaned and the washing bucket is limping downstairs on its own accord! Well it will have to wait as I’m really not up to playing the good wife at the moment. Thankfully Hubs couldn’t care less, he’s given the place a quick sweep around a couple of times this week, but as he says as long as you are OK the rest of it can go to hell in a hand basket!
Tuesday this week was very scary. As you may have read in the comments I gave up and took Tramadol. I didn’t know that this can affect the neuro muscular junction (like MG), after I had taken it I kept feeling really short of breath but I kept ignoring it as I was so tired and it wasn’t enough to really frighten me. By 12pm Tuesday I was really gasping for breath like a goldfish that had been removed from its bowl. I had to use my oxygen concentrator and take Mestinon within the hour I was feeling good. My eyes opened up properly, since taking the steroids my bilateral ptosis had been bad, so I was walking around looking like I was half asleep. Hubs couldn’t believe the difference he said my yes hadn’t been that wide open for ages.
My response was very typical of someone who has MG to deteriorate when initially starting steroids. That’s why most MG patients are hospitalised before and whilst starting steroid treatment. I have been extremely tired and weak since starting the florinef. I have been in agony with my neck as the muscles have been so weak. Monday night was so bad I ordered myself a neck brace which has come today. My neck feels great in the brace, my spine doesn’t feel so compressed. My shoulders don’t know what to do with themselves as they have got so used to being permanently hunched up to try and give my neck and head some support! So I hope that I will soon start to pick up and get out of this exhaustion rut.
Whats odd is apparently I don’t have MG so there is no medical reason for my body to have reacted in this way to taking the steroids. Very Bizarre unless in fact I do have MG…………..?
I am currently managing about two hours out of bed at a time at the moment. Even when I am out of bed I am having to lie on the sofa. I like to change surfaces so that my body doesn’t develop pressure sores. That would be a nightmare on top of everything else!
I don’t really know what happened to Wednesday it seems I slept through a lot of it. Thursday (today) is feeling like it might go along a similar vein. I am sleeping OK at night (ignoring Monday into Tuesday) I have no viral illness or any reason why my body has decided to just shut down and sleep. Its all very weird. However if my body is saying sleep it must have its own plan and I shall just listen rather than trying to fight it
Thanks for reading xx