The other day I explained how I had been going through a pretty rough patch. I just focused on my depression in thar post, something I have always (for the most part) kept to myself until recently. Obviously, I have expressed that I was feeling depressed in the past, but to me, that was all situational. This time I was talking about something that is just part of my awesome brain (catch the sarcasm?). Well as I said in that post, I finally seem to have a hold of it (as of now) but what I did not really talk about is how my Multiple Sclerosis has just been out of control, in fact, I would say it’s pretty obvious that I am in the middle of a relapse as I type.
I blame the heat of summer. This always happens in some way shape or form come July. But I tried really hard to prepare this year and though my environment (my air-conditioned room) is definitely way better than it was in the past I feel like my MS is just more sensitive to any little change. So I had started eating better, exercising, I finished Lemtrada last year, I started Zinbryta this year, and just did everything I could to better my health and I felt pretty good for a while but then everything seemed to fall apart. For example; I live with fatigue every single day, from the moment I wake up till the moment I try to go to sleep. I don’t remember what it felt like to wake up “well-rested and ready to go”. I now only remember how to power through it with Nuvigil, coffee, green tea, etc. and pretend there is nothing wrong (and usually I do that really well) despite me wanting to lie in bed all day (which is not entirely an option for me). But lately it has been 1,000 times worse, I just have not been able to push through it and take care of everything that I have to take care of.
I started getting really dizzy and my vision started to blur to the point that I could not even read my phone. Again, let me emphasize, this is all more than usual because these are symptoms I live with every single day, they are just usually tame enough that I can work around them and push through it all. I don’t think people really get what I go through every single day, even on a “good” day, because I try to not complain or even make mention of it. If I do that means it has surpassed my ability to “play it off”. Now back to my symptoms, right now it’s like my eyes take forever to focus on something and then when I try to shift my gaze to something else (closer or further) it takes a little longer for them to refocus. It’s like constantly having to manually change the focus on a camera every time the focal length changes. So when you mix all of the above it obviously affects my balance. Trying to get around the house makes me feel like someone who is really bad at parkour. This all came about pretty slowly in the last couple months but in the last week or so it really kicked into overdrive. I am trying to get steroids or Acthar or something but trying to get anything from my neurologist since he moved to this new clinic is basically impossible.
Anyway, as if my fatigue was not bad enough on its own, all the extra difficulty that is going into me completing simple tasks (plus the fatigue I was getting from depression) is just exhausting me. I have been sleeping so much so often! On one hand, I can tell I am having extra difficulties with my cognition just from my MS flaring up but on the other hand I wonder how much worse it is because I am always struggling to keep my eyes open? Although I should say, yeah, I am tired and can barely keep my eyes open but that does not mean it’s “easy” to fall asleep, getting my brain to switch from “awake mode” to “sleep mode” is a pretty difficult chore.
What’s really been on my mind in the last few days is that I am only 27 and I have already been through so much. Will things ever calm down? Will I ever be able to make it a month without everything going to hell? It’s not like there is another treatment that’s any more aggressive than Lemtrada waiting for me… Some would say Ocrelizumab but I am not convinced. So now I wonder if it is time to start really looking into stem cells (HSCT) but I really don’t know. Right now I just really want to get through this relapse (or whatever it is) so I can just really start pushing myself on fitness and diet because I am tired of this. I am tired of feeling like crap every day. There is still so much I can do in the world of alternative medicine and I think it’s time to really start looking more deeply into it all because there is so much I have to offer in life, so much I want to do that I can’t because of where my health is at right now.