It’s 3pm as I write this, and I feel like I could lie down and sleep for hours right now, even though I got a full 8+ hours in bed last night. In fact, I have for the past few nights. Notice, I did say “in bed” and not “sleeping”. That’s because, yes, I’ve been in bed, but the sleeping part isn’t always occurring. It’s one of the symptoms that doesn’t always get enough attention, in my opinion. Insomnia runs strong, like the force, in those of us with MS. You would think the opposite, knowing that another major symptom is fatigue, but fatigue is a very different thing from tiredness. Look at it this way. Sleepy versus worn out. Two different things. One isn’t necessarily sleepy when one is plum worn out. One can be both, but they are separate feelings. Thanks to MS, I am often experiencing both at the same time. Unfortunately, often, when I am truly sleepy, I still can’t fall asleep. The worst is when I am honestly sleepy in the middle of the day (today being a perfect example), but then, at night, when I should be sleepy, I’m simply worn out. Eyes wide open, mind active, but body completely exhausted. Not a good combination.
Now, you might think to yourself, ‘Why doesn’t he take a sleeping pill?’ as you read this. That would be great, if not for a couple of reasons. Number one, I’m currently taking 30 pills a day. Adding another pill to the mix is not a pleasant idea, unless it makes me feel better. Unfortunately, sleeping pills have never made me feel better. That leads me to Number two. Number two, I already deal with brain fog, fatigue, and general sleepiness during the day as it is. Adding that all too common, next day drowsiness from a sleeping pill to that mix would probably do me in. I would be a zombie all day everyday. Which wouldn’t be so bad if I didn’t have stuff to get done, daily. Plus there is the whole craving brains and the possibility of severe head trauma doing me in that makes zombie-ism a very unattractive state to live in. Just ask most people who used to be on ‘Walking Dead’. I imagine it’s pretty nerve wracking. The fear of damage to the head. Especially with the general difficulty zombies have with the whole walking thing. One misstep, and POW, head trauma. Which, by the way, is something many MSers have in common with the fictional zombie population. Walking isn’t always a strong point. What with the numbness, foot drop, and leg/foot pain we often deal with.
Wow! I have to admit, this is the first time I’ve really realized how much we have in common with zombies. It’s kinda creepy, just like zombies. The big difference is, MSers are trapped inside the malfunctioning body, aware of everything going wrong. Zombies have the benefit of not actually being the person they were, inside the shuffling, moaning, mindless vessel, watching everything happen as a spectator. So, don’t be afraid if you see us coming toward you. We are still ‘us’. We won’t attack.
Seriously, though, there are times where I could sleep all day, and still feel completely drained. As if I haven’t slept in ages. Of course, life doesn’t care about that. It continues to require me to go to work, do chores around the house (Which, unfortunately, usually takes the biggest hit. Sorry, Jen.), and attempt to be a functioning human each and every day. Imagine not sleeping for several days in a row. How well do you think you would function at work or out in public? This is the feeling that MSers deal with on a regular basis. No amount of sleep remedies the situation. You just have to pull yourself up by the bootstraps, and do the best you can, no matter how you feel. Life isn’t going to give a free pass simply because of MS. It just keeps on truckin’ forward, even though the gas tank is empty.
One of the oddest parts of it is, I’ve sort of gotten used to it. I expect it. I plan for it. Having a good day is a unexpected treat. It’s awesome. On good days, I do need to be careful, though. Often, I’ll end up pushing myself too far, trying to take every advantage of feeling better. I’ll try to get as much done as I can, while I’m feeling energetic. This, unfortunately, has consequences. If I push myself too far on good days, it takes longer to recover afterward. One step forward, two steps back.
I have found one way to battle it that seems to help……some. A friend of mine that suffers from Lyme Disease, which also causes fatigue, turned my attention to a supplement called D-Ribose. (Thanks, Amy Colton!) It takes quite a large dose each day to help, but it does help. I am currently taking 1000 milligrams a day. The delivery method that I am using is chewable discs the size of a quarter, with the thickness of about three quarters stacked on top of one another. I have five in the morning, and five in the evening. It’s like eating an entire stick of chalk every single day…..but it helps. I didn’t think it was helping at all after my first bottle of D-Ribose ran empty, so I didn’t bother with buying another bottle. I honestly didn’t notice a difference while taking it. The lack of it, though, after I had apparently gotten used to it being in my system, was very noticeable! I was lethargic. Even more than before. I was a complete and total sloth, not just a part time sloth. The only difference in my routine was that I had stopped taking the supplement. It, most definitely, had been working. The energy build had just been so gradual that I didn’t notice it. But, boy howdy did I notice when I stopped…….CRASH! So if any of you fellow MSers out there haven’t found anything that works, and you haven’t tried D-Ribose, give it a shot. It helps me. It doesn’t completely eradicate the fatigue, but it truly helps. I started off by taking 1500 milligrams a day, and came down to 1000 after several months. Of course, talk to your doctor first. That’s always a good idea.
Unfortunately, that is the only thing I’ve found that helps for me, so far. If anyone else has any ideas, let me know. The fatigue is such a huge problem, I’m willing to try almost anything, these days. I wish I could go back to those days when I was young, driving other people crazy with my energy level, and bottle that energy up before sending it forward in time to today. It was glorious, having that kind of energy. I can still remember what it felt like. Even though it is a vague memory, it’s still there. And I miss it.
Oh well. Today is today, and yesterday is yesterday. There is no changing that fact. So, just like you, I adjust and adapt to fit my current situation. Sure, sometimes it feels like it takes the flexibility of a contortionist, or one of those aliens from Cirque du Soleil (Yeah. I’m pretty sure those are aliens. Humans can’t do that shit.) to bend without breaking at times, but we keep going forward. We have to, right? Really, there are only two choices. You either keep going forward, or you stop. And stopping means the end. I’m not ready for the end, yet. So I keep moving forward.
Speaking of the end, I think that’s all I’ve got rolling around in my brain today. Until next time, since you can’t send me raw energy through the inter-web, just send me any ideas that have helped you, if you deal with fatigue due to a health situation. My ears are open, and my spirit is willing. Hope to hear from some of you soon! See you next Tuesday.