I was going to post this update on Friday, but in all honesty, I was just too damn tired. Super tired, yet unable to sleep due to all the corticosteroids still coursing through my body. I'm still unsure of the exact reason why, but my neurologist ordered five days of steroids, instead of the three that are usually given. Then I was going to post on Saturday, but I was just somewhat feeling things out and seeing how I was doing. My dear friend stopped by to see me and was surprised at how well I was doing. I was agreeing with her. Other than feeling strangely, and tired, I was doing great. I really thought it was going to just be a breeze for me. But of course, pride goeth before the fall, and Sunday I did fall off of my high horse and onto the couch. I thought that I was exhausted on Friday, but I didn't know what tired was at that point.
So here we are on Monday, and I'm still tired. I don't think I've made it a secret that I am an insomniac and have been since infancy. So when I'm sleeping (and like solid sleeping not just dozing) over 10 hours a day, it's just weird. I didn't sleep that much today, as I did sleep last night but I did nap. I never nap. I hate napping. One thing I wasn't expecting was the stiffness I'm feeling. It's pretty obvious when you think about it. I sat in a chair, reclined for about 40 hours last week. My exercise consisted of shuffling Captain Braun to and from the washroom. Then I come home, and am either laying on the couch, or in bed. It's no wonder my muscles and joints are staging a revolution. I was making an effort to get up and walk around the house today, but I think I've registered more steps on my fitbit during a bumpy car ride. Stiffness is also a side effect of the drug, but I'm happier keeping the stiffness my fault so I will be motivated to at least shimmy around the house.
Going into this, I really didn't know what to expect. I don't actually how you can expect what you just don't know. I mean I knew what to expect in the form of how the treatment would be administered. I had some expectations from reading the literature on how I was going to feel. I knew there was a chance for changes in blood pressure and heart rates. I just wasn't expecting them. On Thursday, my heart rate dropped to a really low rate. That was expected. I think that with the extra days of steroids, as well as the treatment, my blood pressure didn't know what to do and just decided to spike for the hell of it. The nurses check blood pressure, heart rate, and temperature every ten minutes for the first hour or so. We ended up stopping the treatment for about 20 minutes just to get things under control again. Drinking more water (four litres total that day) and some saline really helped. It really is amazing how much blood pressure can change in the span of 20 minutes. Although it might have interrupted some rest, I'm so glad the nurses were on top of things.
I do have to take a minute to talk about Nurse Maria. Other nurses did take care of me at the clinic, and they were great too, but I spent the majority of my time with Maria. She took the time to talk to me and answer every question I had. Even ones that had nothing to do with my infusion. I really appreciated her being there for me. Thank you Maria. (she already got a tearful hug from me. Steroids make me so emotional)
Now I am playing the game of "what comes next"? I know the drug works by binding to and killing immune cells (lymphocytes or white blood cells) which are involved when the immune system attacks myelin. So that being the technical jargon, I'm imagining an epic battle inside my body that does include swords, and possibly dragons. It's much more exciting that way. The hope with the drug is that when my immune system regrows itself, it will no longer feel the need to attack itself. That would be great and my fingers are crossed.
In all my reading, they just can't tell you how things are going to feel. I haven't spent much time with other MS patients as I didn't really feel right at the MS Society here. It was nice to talk about symptoms with some of the other patients and know that they actually know what you are talking about. Even my neurologist doesn't really know. So, the point to that is that I can read about what may or may not happen. I can see all the scary side effects that might occur. But there's still nothing that tells me how me, Kate, will actually react to this drug.
My vision has gone blurry, but from experience I know that's from the steroids. The reason why I brought up the epic battle in my body is that I can somewhat feel it. I'm assuming it's just a reaction of the nervous system, but it's like I can feel every nerve in my body tingling. Now, this won't make sense unless you've experienced it, but it's totally different than when I have a relapse. That's more like every nerve has been lit on fire. Honestly, I have no idea if this is normal or good, but I'm going with it. Besides, it really is fun to imagine all sorts of battles happening in the body.
There was one other patient at the clinic who was having the same drug I am, but he was on his second round. He didn't have much insight either. All he told me was that he was sick and tired for about a month and that his MRI showed nothing new. I guess if that's the least that happens for awhile this will all be worth it.
So this is me, putting on the grin and bearing it. Keeping my tingly fingers crossed that this will make a difference. I will bid you farewell because (grumpily said) I need a nap.
Love,
Kate
Try to keep your spirits up! I believe that ones state of mind is very important. I admire you for taking this horrible disease by the balls and doing something about it! My husband developed an attitude of "woe is me", "I give up" and became a very miserable and angry man for the last few years of his life.