#myasthenia gravis
Today’s Plasma Exchange was painful and tiring but went well overall. I am very much one big bruise now though, and am preparing for more pain tomorrow.
They’re running out of insert options currently, so I’m getting bruises on top of my bruises. Literally. Apparently it’s a steroids thing? It’s very easy for the needle to slip and cause pain because your connective tissue is weaker.
But I am feeling more spirtely though! I am “god it’s been a long day” tired, rather than “my body hates me” tired and that’s quite refreshing!
But yeah, last one tomorrow and then we shall see how I fare in the weeks to come! I feel like this has done more for me than any of the steroids did. It just also happens to be a more exhausting procedure.
My specialist was also meant to come see me at some point this week but hasn’t so goodness knows what is happening there ¯\_(ツ)_/¯
It’s not like I have anything better to do when I’m lying in the bed with my arms stock still on two pillows unable to move a fraction of an inch in case something moves the wrong way. Other than listen to Discworld Audiobooks.
Oh god it was so nice to wake up this morning and realise that I didn’t have to go and get needles stuck in my arm!! And won’t have to do it again for another 8 weeks =D
I am incredibly purple now though. My skin matches my Batgirl Hoodie. It’s quite impressive. This is an issue though because my Sister’s Wedding is in 10 weeks and if I have my next Plasma Exchange in 8 weeks then I’ll probably still be purple from that in all the wedding photos… might have to try and find some decent cover up. Not that there’s any shame in bruises, just that they aren’t exactly pleasant to look at!
I am already feeling more spritely following the procedure though! I bent down to pick something up off the floor and was able to get up again without having to yell for my Mum! Which is a BIG improvement.
That said, when I took down the washing from outside earlier I was incredibly breathless afterwards and had to sit down. However I didn’t drop anything or collapse so that’s a good sign!
Hopefully I should improve more over the next few weeks, and then obviously I’ll get worse again but hopefully not as worse as I was before? The goal being to always get out the bad antibodies BEFORE they overwhelm the system.
I’ve been contemplating getting a Rollator recently, because it’s been getting so bad. We’ll see how it goes, but maybe if we keep the treatment up I won’t have to get one? Not that there’s any shame in using one, but just that I would rather not have to since they come with so many issues of storage and problems with getting on public transport etc. I mean, I’m also aware that my solution to not having to use a rollator is to get incredibly invasive treatment every 8 weeks but I guess that goes to show how much internalised ableism I’m living with lol
I’m gonna put things to the test in a couple of weeks and see if I can manage a trip into town to go pick up comics. Obviously in the middle of the day when there will be fewest people about, since you know – no immune system.
But the easiest way to see if your body still hates you or not is to push it to the things it didn’t complain about before!
And if I DO collapse well at least I’ll be near the hospital when I do lol
