Something interesting. I have not been feeling as fatigued. I mean I still feel tired but I am waking up before my alarm and am too awake to try to sleep in. I also can not nap. I lie down but I feel the need to get right back up. I have been getting a lot more done wether around the house or writing. It has been nice.
While I am waiting for Lemtrada I still find myself falling apart. My vision/dizziness/vertigo/oscillopsia or what ever you want to call this is drastically worse. Getting through the day is miserable and as soon as I wake up I am already thinking about going to bed again where I can have a few hours of MS free dreams. Since I am getting worse and can’t seem to at the least stay “neutral” I decided to try something I was going to wait to try till after I started Lemtrada because if I got better I wanted to know what was causing it and if I tried something so soon before Lemtrada I might not be able to tell what was working but at this point I don’t care; I just want to feel better and be functional! So obviously I have been trying marijuana but what I really wanted to try was cannabis oil. No high because there is no THC, just CBD which is an anti-inflammatory and an anti-oxidant substance. When you hear about cancer patients curing their cancer with marijuana this is what they are talking about. A nasty black oil in a syringe that you have to ingest either in food, under the tongue or in a capsule. I am sure there are other ways but those seem to be the usual methods. So I actually could not afford that just yet so I went for another product that comes in a pill form with the oil in it. One of the main difference is it has a tiny bit of THC in it (not enough to make you high) and it has a limited dose per pill (5mg of CBD and 3mg of THC). So I bought that last night. I feel like I am just taking a fish oil supplement. I mean it is very similar to that or a vitamin D gel casual in shape and appearance. No weird taste, just a simple pill. So far so good. I took it before bed in case it made me drowsy and because other forms of cannabis I have tried really seems to help or eliminate the whole overactive bladder thing (that wakes me up at 3am in a panic to make it to the restroom in time) I decided to drink a bunch of water right before bed. About a bottle an a half (I was really thirsty). Normally I try not to drink anything 2 hours before I plan on going to sleep and if I even dink enough to swallow a pill I usually wake up in dire need of using the restroom. So a bottle and a half of water? This was just a time bomb right? Well I woke up at 3am on the dot and did in fact have to use the restroom but it did not feel as “urgent” as usual. I don’t know how to explain it… I could tell my bladder was full but I did not have that “oh my God, I don’t think I can make it to the restroom fast enough” feeling I usually get at night. Then I lied back down but I could not fall asleep. I was wide-awake. Some forms of cannabis help fatigue (yeah I don’t get it) so maybe that was the problem? I then realized I was really hungry but what ever, I will eat in the morning. 20 minutes later I am wide-awake and getting even hungrier. I never have an apatite like this! I usually have dinner and then the next day a cup of coffee for breakfast and then I eat lunch. I have (for some odd reason haha) always had a problem with putting on weight. Finally I could not take it! I can’t remember the last time I felt so hungry! So I stumbled downstairs at nearly 4 in the morning and started eating what ever I could. Keep in mind that right now I really try to not use the stairs during the day because I worry I will trip and fall. Afterwards I went back to my room and watched TV until I eventually fell asleep. So today I decided I would take it in the morning to see how I feel throughout the day in case it gives me energy and makes me hungry because that is better to “deal with” during the day than at 3am. Even if it does nothing to reduce the inflammation causing my visual symptoms it is still worth taking because I have never come across any pharmaceutical pill that takes care of more than one symptom! Usually they will one symptom and cause side effects but this has no side effects and doesn’t just take the edge off but completely resolves a symptom! I wish I had tried this years ago because there is a really good chance I would be so much better off today, not dealing with what I have been fighting all year and probably still be in Colorado with a job and apartment. Now I know. So the next goal is to get that extract oil since I could easily take200mg instead of 5mg of CDB; imagine what that would do! I have no clue… I really am amazed because I went into this a total skeptic and so little is doing so much! And all I need to do is save up about $60… that is it… $60… So I will keep everyone posted as the days go on! And yeah, I am sure I sound way too excited but when you have been dealing with symptoms for so long and tried so many medications that do nothing it is exciting when for once they are just gone. It was only one night so who knows, maybe last night the universe just felt like giving me a small break and the pill was just a coincidence? I don’t think so but that is why I have to see how I feel after a week or tow of taking this. It’s not science if it isn’t repeatable right? Click here for more info about ProcanaRead more
First of all I am sorry that I just have not been doing much writing, I have not been feeling great and you would think writing would be easy with fatigue but I can’t even think! So this will be short. Tuesday marked the 3-week mark meaning I only have 3 weeks till I can do Lemtrada (since you have to wait 6 weeks after the Zoster vaccination to do Lemtrada). I don’t have an exact date set for my infusion just yet but I am guessing it will be the week of the 31st so I can have a full work weak to get Lemtrada (5 days). I have been so fatigued lately, more so than I have ever been. I decided to play with Provigil some more; I am taking it every day for a week to see what happens since I never gave it more than 2 days. So far I am not entirely sure. There seems to be a “crash” regardless of whether or not it gives me any sort of boost. I think, at the most, I feel like I drank 3 cups of coffee at once. So at the least it is a lot easier to swallow one pill than drink 3 cups of coffee haha… Something else I am noticing is my legs are getting weaker. Maybe that is because I am sitting at the computer all day? I really only notice it when I walk up the stairs. For that moment in-between steps when I am on one leg it feels like I am going to collapse. I know I need to work that muscle out but I am just so tired! So we will see, I am trying to work some stuff out because I wanted to do as much as I could before Lemtrada so I have a better baseline to improve from. Unfortunately it feels like I am still slowly declining; vision, balance, strength, cognitive function, etc. Also, I saw that neuro-ophthalmologist again the other day. Waste of time if you ask me. All he did was spit out condescending remarks about optometrist who did the same test he wants to do (but obviously can not do them as well as he can) and how they are not a part of my medical team because they are doing nothing to treat my problem. I find that interesting because what is he going to do? Nothing… because there is nothing he canRead more