This post contains blunt honesty and graphic descriptions…apologies…it is what it is.
Long time I eh focus on the ms itself (I think I may have shared that I don’t capitalise this so as not to give it a whole lot of importance…kill me – it’s the little things).
Since Lemtrada I cyah lie, I’ve been stable – no disability improvement per se (purely as a result of Lemtrada) but stable. At the end of the day, guess I’ll take that and run with it. It’s very weird though, actually maybe it’s not weird it’s just multiple sclerosis. Before my first infusion at the end of 2015, when I woke up at night to pee, my bladder wouldn’t empty. I would pee, think I’m done and go back to bed and as soon as my head hit the pillow, I’d have to get up again. Steups…when it first started happening I thought that it was a normelnormel thing, only to find out that no; it’s the ms. I don’t remember what I started doing but I assume that I would stay on the goddess till the second stream came out. Post infusion number 1, that shit stopped. I can’t tell u just how excited I was to realise that I could just go back to bed without issue. For a year, I was peeing at night quite blissfully…and then came infusion #2.ugh! It started back.
was it coincidence? Hell I don’t know but it’s quite strange in my book. Steups. The other weird thing is that it only happens when I wake up at night and it’s always very urgent the second time around; I don’t experience anything close to that happening during the day. Talked to my doctor -dr. G, and he said that it probably happens during the day too but because I’m up and active I don’t notice but my argument to that is that during the day I go, I leave and I have absolutely no need to go back right away. One time years ago I’d shared my experience with a home health worker and she suggested that I press down on my bladder to help it empty completely. Well I started doing that and I must say it certainly helps – I still expel twice but the second stream comes out sooner. I would say that 95% of the time that I get up to visit the goddess at night I experience that and it is so damn annoying because all I want to do is hurry up and go back to sleep!!!
I know that one of the solutions to this is the use of a catheter; in fact I’ve heard of many ms patients who use them. Say what u want about me but I do not want to become one of those patients. thing is that pressing on my bladder will help it empty but it’s still not emptying the first time around so does it really make any difference medically? While talking to dr. G, he told me that apparently there are ways to train the bladder so that it empties every time; It’s taught in therapy with paraplegics…which reminds me, I finally got the call to go back to Shepherd for PT & OT. I go for my initial evaluation on September 4 so it’s something I’m definitely going to bring up with my therapist.
I cyah lie, apart from my forever present physical disability, that bladder issue is the only symptom of the ms that I am experiencing…well and my voice – although that is not a symptom but maybe a function of it. Of late I am so very self conscious when speaking, it’s not funny. I really hate to hear myself. But anyhoo, that’s been my ms experience over the past few months. Here’s hoping that I’ll be able to work on the bladder issues and nothing else presents itself for a long time to come..
ah gone so, Stax