I never understood why this happens. It’s like I’m caught in a catch-22. If I am fatigued during the day, I end up taking a nap. These naps are not your typical “power naps” but rather 3-4 hour hits of deep sleep. Then later I am still fatigued and not rested. I tell myself that I want to go to sleep early (at least by midnight – yes, that is early in my turned-upside-down world) and hopefully start to change the cycle. I was always a nightowl but this is ridiculous. Three nights this week, I went to bed by 1am and still did not fall asleep until 3! Even when I take my Lunesta, it still doesn’t help.
Melatonin, however, seems to help a bit and when I took it last night I was able to fall asleep rather quickly – within an hour. So, I may have this be my go-to and see if it helps start to break the cycle.
Yesterday was a rough day. I had a lot of increased weakness and proprioceptive issues with my left arm and hand. I think this may be the beginnings of Tysabri withdrawl or Tysabri Rebound Effect. Either way, it’s no fun to have MS symptoms returning and worsening. Thankfully, today my arm feels better, pain-wise, and is moving a little better as well. Hopefully it will stay that way. I’ll be calling my neuro tomorrow to get set up for my next IV steroid.
I saw another doctor yesterday who wanted to help me with my depression/anxiety, as well as neuropathic pain. So, I was given scripts for Cymbalta and Ambien. The Ambien is hopefully just going to be a temporary thing to help me retrain my body to go to sleep at a more appropriate hour at night. I need some good rest to try and give my body a fighting chance at trying to heal.
I pretty much look normal (whatever normal really looks like hehe) to most people on the outside. But many don’t see my cute pink cane in my car (as my backup walking device), nor do they see the pain searing up and down my spastic legs, or the fatigue which forces me to stop every few minutes to rest and recharge before I do that next load of laundry (that reminds me I have one waiting from 2 hours ago, ugh!). They also don’t see the grab bars in my shower. They don’t see the pharmacy of medications I carry in my purse with which I cannot be without in order to function. They don’t see me getting hooked up to an IV once every month (this Wednesday is the next one – wow time goes fast) to get a powerful second-line MS drug because I failed all the first-line drugs. And as I write, I have the problem of insomnia at night because of the painful spasms. Oh woe is me… whatever…
But it could be worse. Hell, it’s actually been worse. I will be coming upon my 2 year mark of being relapse-free. Remission is awesome but I still suffer with the remnants of what this disease has done to my body. I am lucky to “look normal” – just wish I felt that way.
