The thing is most of the time I feel okay.
I can pretend that there is nothing wrong, that I’m totally fine and I don’t have anything to worry about…but then my mind reminds me of the fact that I’m in isolation at the moment. My most recent bloodwork showed that my red and white blood cells had plummeted to levels they had never seen before.
I recently went through my second round of Mavenclad, a drug that is normally used to treat Lymphoma cancer. The idea being that it will eradicate my immune system and when it grows back, it will do so without the lesions that cause my MS. I never thought I would go through chemo to treat something that wasn’t cancer and that the drug may cause cancer in the end; the irony isn’t lost on me.
It’s been a bit of a roller coaster ride. I’ve had dizzy spells, hot flashes, nausea and fatigue. There have been falls, too but I don’t know whether those have anything to do with my cerebral palsy or my MS. I’ve lost sight of where one disability ends and the other begins.
I finished my treatment a couple of months ago and I know from talking to my MS nurse that my immune system is at its lowest right now. I have to stay away from people as much as possible as I’m now prone to parasitic infections and other maladies. Since Mavenclad is a form of chemo, its side effects are very similar.
It’s odd to think that something I can’t see is determining what I can and cannot do, however going through Mavenclad treatment has taught me a few things about myself, mostly to listen to my body. This is something that I’ve had to learn how to do. It’s hard for me having a body that sometimes limits what I can or can’t do. It’s hard to be resentful when it’s the only body I have.
Sometimes, when I stop to think about it, I can visualize my immune system like a sea and the water levels are growing lower and lower. However, the lovely thing about tides is that they always find their way back. I know that it will take time for my system to regrow, and I just have to be patient.
I’m trying to approach everything with positivity. Not toxic positivity, I’m trying to outgrow that habit of pushing everything else aside until I’m only left with the sparkle. No, I’m just looking for the gift in every day, the small joys that make everything easier to deal with. I learned early on in my journey wit MS that positivity and a positive mindset are key.
Those gift can be spending time with my husband, writing a few pages of my current book that I’m working on (or this blog post), working on a new painting, a phone call with a friend, spending time with our cat Anakin who is always up for a good cuddle session or a cup of tea and a good book. The joys don’t have to be big, just big enough to shed some light into the shadows.
I’ve had friends remark that they often forget what I’m dealing with because I’m so positive most of the time. I often forget too, but the body takes the time to remind me. There always seems to be so much on my shoulders and inside my head, all these words that need to be said, emotions that need to be felt and acknowledged. There always seems to be almost too much to think on and work my way through.
I am thankful for the small joys that I have in my life and for the big joys, too. I’m not avoiding thinking of the big things, jut choosing to think about something else for a while until I can work my mind around what I really need to think about. If that means I write a lot or paint a lot, so be it. In the end, every word and canvas make up a whole world that I can explore when things get a little too dark.
The little joys are the lights in the darkness so that when it gets to be too much, I can always find my way home to myself.