Man… this is draining me. So as I said before, the day I got back from Colorado I fell into a relapse. A relapse is the appearance of new symptoms or worsening of old symptoms. I am not experiencing anything new that I can think of but all the symptoms I have been dealing with for the last 12 months or so are on fire; they are so much more severe. Those of you with Multiple Sclerosis know when you are relapsing and I can tell you that I am clearly relapsing.
I have been sleeping the days away mostly as I am so fatigued. I may have mentioned (I forget) that I started Nuvigil, which I have been on in the past at a lower dose (150mg). I have the maximum dose (250mg) now and it’s doing nothing despite the fact that when I stopped the lower dose in the past it was because I could not handle the side effects. Now? Nothing. Not even the side effects; it’s like taking a sugar pill. I will soon be writing about how medications for fatigue that once worked well no longer seem to work after Lemtrada. So for now? When I am not trying to let myself just sleep? Coffee. I don’t know if it actually helps or if it is just in my head but this is what I have to work with right now…
So my vision has got so much worse; it’s like all the progress I have made in the last few months was undone. Now, what do I mean by vision? It’s hard to say because I can’t seem to diagnose the symptom with any sort of label that feels right. When I am sitting perfectly still and looking at something it’s clear but the instance I move my head everything blurs and streaks until I stop moving my head. If I try to look over my shoulder (pushing my eyes as far to the left or right as I can) everything blurs. This greatly effects my walking around the house or anywhere where there is a lot to look at (like a store or a cluttered room). We have just been referring to this as Oscillopsia but I don’t know… I obviously have not been driving (since February 2015) and what is maddening is I was starting to feel like I could start driving before I went to Colorado but now? Back to square one…
I also have felt really weak. Well, more like I am really heavy so every tiny movement I make takes twice as much energy. So I feel like I am heavy and my head is full of a really thick fog; if my brain was a car engine it would be like taking all of the oil out and replacing it with molasses, it’s working extra hard to run extra slow.
Those are probably my most PHYSICALLY debilitating symptoms right now. Mentally? My cognition is horrible. Not just memory but piecing things together; I will think, “What is today’s date?” so I look at the calendar and end up just staring at it forever wondering, “Why am I looking at the Calendar?”
Problem solving has also been total crap. One example is how I play puzzle games on my phone to keep my brain working but lately? I just can’t seem to figure them out and if I can it takes me much longer than usual and my score is way lower. It’s really depressing me because I obviously do not have the physical body I once did but I always thought, “At least I still have my brain” but lately, I feel like that is starting to slip…
I am just hoping that the Acthar will really get me back to where I was before Colorado but guess who still has not got it? Why do they call it a PRIOR authorization when it is always the LAST thing I am waiting on? Don’t you love it when you doctor say you need something and then your insurance company says, “Well wait a minute, hold on, hold on, do you REALLY need it? I mean that will cost us MONEY…”
-sigh- I am not going to lie, life has really worn be down… I am tired… wiped out… and I am starting to think this is just the life I will always be stuck with. C’est la vie.
PS – I had really bad insomnia last night, this PS is mostly for my own records