Wow! I have been so tired! Fatigued! Whatever you want to call it, I just have not wanted to even move! On top of that my vision has really sucked making me feel really dizzy (more than usual I mean). Either way I have been trying to push through it and actually get stuff done like minor chores and finally getting some work done on my blog.
It might not look like much at first but I finally merged my old blog with this one. All the posts from my old blog are now part of this website and if you try to visit my old URL (mattsms.com) it will redirect you here. Maybe that sounds like a minor change but because of some updates and other technical crap it was a pain and it took me forever to get done because nothing was working! So I will now (slowly with time) organize my menu, update some articles and write some new ones! If you ever want to read my older articles all the way back to when I was first diagnosed with MS they can be found towards the bottom right of my blog by navigating my blog archive, it’s like I have always written them here on this blog!
As far as the fatigue I don’t feel like anything caused it, just a random wave of suckiness you know? But of course it can’t just be fatigue, no, that doesn’t suck enough, I have also felt really antsy/restless. A horrible combination of feelings, like dying of thirst while having to go to the bathroom REALLY BAD. So no part of my body has wanted to move; I lie down and then I can’t shut off, I feel compelled to get back up! This has resulted in me literally just sitting at my desk and staring at the floor for hours wishing I could just sleep but even though I am too tired to even flip the TV on I can’t turn my brain off! So instead I just sit and I count down the hours till I can go to sleep for the night.
At night I have been taking Tylenol PM and Melatonin and I have to admit I have been sleeping really well! I have not been getting up as much to go to the bathroom every 3 hours and my dreams have been so vivid! Unfortunately once I wake up in the morning it’s right back to the extreme fatigue, like I only got an hour of sleep. Coffee does nothing, Ritalin does nothing and Nuvigil just makes me feel more antsy… And yes, I have tried Provigil and that did not do anything after a few days. My doctor doesn’t prescribe Adderall so I am sort of lost. It’s horrible being stuck with a problem that seems to have no solution. Although, as much as the fatigue sucks, it hardly compares to my vision. The dizziness it causes me just makes everything feel impossible. Even typing, right now, I keep hitting the wrong keys and having to hit backspace. It takes me 3 times as long to write because of this. Although that is partially because I think my fine motor skills are getting worse. But the fatigue is just killing every ounce of motivation that I might be able to work up, motivation to do anything.
And the cherry on top is that my back has been killing me. It seems that I have strained the muscle in my lower back so every time I arch or bend my back it just kills me! I feel like I always have to keep myself straight or the pain just takes over and sometimes (like today) the pain radiates down to my knees. Awesome because all I have is ibuprofen which is about as effective at killing my pain as scissors are at mowing an entire lawn… Technically the grass is shorter but I still need to finish the job with the right tool…
… My second (and hopefully final) round of Lemtrada is sometime in September, or it’s supposed to be. It was scheduled for the end of September but my neurologist is moving to a new location so I have to transfer to this new center and make sure I am in the system, my insurance is good and I am on the schedule. I hate scheduling. I just want this all to be over with so that I know the worst is behind me (knock on wood). We are talking about me doing Ocrelizumab once it is approved at the end of the year so hopefully that doesn’t knock me on my ass like Lemtrada. I really have not looked into how people react to it so… fingers crossed… all I know is 2017 better be better than 2016!
As we get closer to me doing my Lemtrada infusion I will do another video and hopefully make a habit of it because it might be easier since typing is getting harder. Time will tell… All I know is staring at the computer screen is making me horribly dizzy and somewhat cross eyed (it feels). This is sort of destroying all the options I though I had for an actual career someday, that and Lemtrada as working in a hospital might not be such a great idea when you are immune compromised… Ugh. Had a hard time falling asleep last night because I was just stressing all day about “what could I do as a career once I start feeling better?” – UGH, I hate not knowing…