Well, it’s been a total hassle getting my doctor’s office and CVS Caremark to communicate so I could get that second vial of Acthar but I got it done. Sure it should have been 10 days of Acthar in a row but instead, it was 5 days in a row and then about a 1 week period of time before the last 5 days but better late than never right? So I just have one dose left, tomorrow and even though this stuff takes a while to work I am definitely starting to feel better. I am not sure if the Acthar is working faster for some reason or if it just took so long to actually get this medication that my body is just naturally getting over this relapse but either way I really don’t care because better is better.
I have also been trying to change all the little things in my day to day life that may be hindering my ability to heal or just feel better; things that individually may not do anything but collectively add up to actually help. The one thing that really seems to be making a difference is sleep. Pretty obvious right? Well actually, I have been reading about the effects of THC (since I have been using cannabis oil to sleep) on sleep and come to find out sure, it will knock you out and it’s pretty much a black void, no dreams or anything, silent, which I really like because it is so hard for me to turn off my thoughts at night no matter how tired I am physically!
Well it seems like there is a reason for that; from the little bit of reading I have done it looks like THC affects the brain’s ability to enter “REM” (Rapid Eye Movement) sleep but it really promotes the “deep rest” sleep which I think is just one stage before REM sleep but don’t quote me on that. So it essentially changes your brain waves while trying to enter the different stages of sleep. REM sleep is believed to be the stage that allows you to dream and possibly “organize” all your thoughts from the day to decide what is important enough to remember (long term memory) and what can be tossed out. I have also read it’s when the body is able to heal and I actually ran across a study (unintentionally) that specifically described how REM sleep promotes the brain’s ability to heal in diseases like Multiple Sclerosis. Hmm…. Interesting… I still have so much to read but those little bits of information were enough to try switching things up as I have been relying on cannabis oil to sleep for months, which means, according to what I have read, I have not been entering the REM sleep stage which may be the most important. So it has felt like I have been sleeping great but really I may not have actually gotten good, healthy sleep for months… My insomnia has been pretty bad now that I am not using cannabis oil and I am back to taking a handful of pills to be able to sleep but I have been dreaming like crazy and I have actually felt better during the day!
On top of not using cannabis oil to sleep I am trying to redevelop a natural sleeping pattern which has a lot to do with light so I covered up every single little LED light in my room with electrical tape so that when the lights are all off at night it is as dark as it can be in my room. So it hasn’t even been a week yet since stopping cannabis oil and making all my small sleep adjustments but I definitely am noticing a lot of changes; is it the Acthar? Time? The sleep? All of the above? Again, I have no way of knowing but I seem to be doing SOMETHING right and ultimately that is what really matters! As I learn more about sleep I will talk about it further but for now, it’s just food for thought.
Moving on; I have been slowly trying to not use my cane this week. I haven’t been using it around the house for weeks but I do have plenty of walls to bounce off of so no cane in the house pretty much means nothing to me. The last couple of days though I would go for a short walk while holding my cane but not letting it touch the ground; it was more of a “feeling secure” kind of thing. “I would rather have it and not need it than need it and not have it” you know? Well, today I am trying to break away from even that. I don’t want a “crutch” in life; “it will just make me weaker”. So I took my dog for a short walk with no cane and it went well! It might even be a good balance exercise because my dog goes insane wanting to stop and smell everything and then randomly try to speed up a bit to smell something else so as I am walking her I constantly have to compensate for the random pulling and dragging of the leash. Nothing super tough but keep in mind that if someone simply poked me with their finger while I am walking that would be enough to throw me off balance. So I am going to try to start walking every morning without a cane and start working with my exercise ball again to both start working on my balance and strengthening my core which is basically the main group of muscles you use for balance.
Oh, I almost forgot, that pain in my foot that I have had on and off for a while? It has been gone for a few days. Hopefully it stays that way but it did disappear for about a week before and then it came back out of nowhere so we will see in the next little while…
Now as far as my vision? That is not too much different, well, at least it doesn’t seem like it. But I am doing little things to try to “improve” it even though there really isn’t any evidence that anything I am doing will actually help. I am just trying random things like how I moved my bed further away from my TV so that instead of sitting 5 feet in front of it I am sitting 10-15 feet away. I have vestibular exercises I will start doing again because I feel like if I don’t push my eyes to work harder they will just get lazy and never improve and I really need them to heal because it seems like all my friends are getting married this summer and there are a couple of weddings I really do not want to miss (especially when I am supposed to be the best man) even though they are between 100 and 1,100 miles away. So I need to be able to drive by then! I did back the car out of the driveway the other day to make room for all the people we had over for the holiday (so I guess my vision actually is getting better since I could not have done that a few months ago) so that sort of re-sparked my hope in that it really seems likely that I will drive again and at this rate probably soon but I am not going to rush it; I have a major problem with people who choose to get behind the wheel when they possibly shouldn’t because it is essentially a 2 ton deadly weapon that puts everyone else’s lives on the road at risk and I just won’t do that no matter how bad I want to drive.
So hopefully I have actually reached the point in my Lemtrada journey (roughly 6 months post-Lemtrada) where things stop getting worse and start getting better because I honestly started thinking that day just was not going to come for me, that I had permanently destroyed/altered my body’s chemistry in a way that didn’t benefit me at all but lately? Even my fatigue has not been as bad as it has been in the last 6 months or so. Granted, pills like Nuvigil still don’t affect me anymore but at least I am more or less back to “regular” MS fatigue. For the most part… So we will see what the next couple of weeks bring me!