Have you been asked, “Why are you so tired all the time,” before? I have… more times than I can count actually. But why are we so tired all the time? How can we explain that it’s not just the MS fatigue by itself?
I don’t know about everyone else, but I suffer from MS fatigue greatly. I’m actually on a medication to help with my fatigue, so people wonder HOW can I be tired, when I’m on a symptomatic treatment for it.
It’s easy for me to answer in my head but it’s hard to explain this outright to other people with MS, or those who are just wondering in general.
So let me go a little bit in depth about this. For one, even though I am fatigued throughout the day, when I lay down at night to go to sleep, it’s not easy. I can’t get comfortable, I’m in pain, and my mind won’t shut up and the list goes on. So even though I do my best to get a good night sleep, it’s easier said than done.
So when I wake up in the morning, it takes a bit for me to roll out of bed. I need my coffee, I have to take my medicine… and a lot of the medications we are prescribed, we need to take food with. So it’s not just a get up and go routine, it’s a timely, exhausting routine just to wake up to begin with.
Now, did you notice how I said, “a lot of medications?” This needs to be kept in mind to everyone who is trying to understand someone with MS. Now, not all of us have a pharmacy at home like I do. (Yes, I call it my personal pharmacy, because I have that many medications.)
So all these different medications I have to take, have side effects. A lot of the medications prescribed out there have the caution that it can make you drowsy. No big deal right? But what if you are on multiple medications that can make you drowsy? The drowsiness probability percentage rises. So even though I’m on a medication to help with my fatigue, what I like to call ‘uppers’, I’m also on a lot of ‘downers’ as well. For example: spasticity meds; pain meds; arthritis meds etc. So my fatigue medicine is not only trying to help with my fatigue caused by MS, but it’s also working against an army of downers.
Then you have to look at the outside factors that could be contributing to our energy level. Is it extremely hot outside? Because for me, when it’s summer time in Texas, it doesn’t matter if I’m hiding inside, the weather still affects me and makes my fatigue worse.
Another outside factor would be, has there been a current weather change? I love Texas, born and raised, but boy do we have some bipolar weather. It can be 70 outside one day and 35 outside the next. When the weather changes, especially drastically like I just explained, it really messes with my energy level.
Now we need to look into our daily schedule. What do we have to do that day? Work, grocery shop, clean the house, laundry… all of these things that need to be done, reduce my energy level, as I’m sure it does others as well.
Even if we have to go to the doctor that day… it can be tiring. We have to make sure we have our medication list, we have to make sure we get there on time, fight traffic, etc. Now, I am a stay-at-home mom, so I don’t have to get ready everyday to GO to work… so I like my work attire of lounge clothes. But I don’t want to go out looking like a hobo or anything, so I try and make myself look decent. This, again, takes away from my energy level.
Now if we look at internal factors… it’s that time of the year, so allergies are bothering a lot of people. That makes me tired, especially if I have to take an allergy pill because of it.
As most of you know, I do volunteer work from home for MSWorld. So if I have a busy day with tasks I’m doing, I might have some issues with my cognitive dysfunction. Good thing about volunteering with an organization that is run by all volunteers who live with MS, is that they GET IT. For that, I’m blessed.
There is another internal factor that sort of coincides with the factors I’ve already named. All of the factors I’ve listed tend to cause stress. Not just stress on the body, but mental stress. When I’m stressed, I’m tired. If I’m really stressed, it causes a migraine, which makes be even more tired.
Doesn’t it seem like a never-ending cycle?
So, if I have some event coming up, I try to ‘rest’ as much as I can before doing what I have planned. Even though I rest for the upcoming planned event, I will be tired a few hours into it. I also know that by doing certain activities, I will ‘pay’ for it the day after or days after. Just recently, I went out dancing with my husband and friends. I had a blast; I love going out to dance. This was on a Friday. I agreed to go, even knowing that I would be spending my weekend recovering.
So yeah, even though I “seemed fine” the other day when you saw me out, that’s because I put on a happy face, had fun while I was doing it, but I knew I was going to pay for it. I can’t do back-to-back events that use a lot of energy, or require me to do a lot of physical activity. If I have to spend the weekend paying for ONE night out… I don’t even want to know what would happen if I did high activity things two days in a row.
If I have thing planned in advance, I will nap before them. So that I’m not falling asleep while I’m out and about.
So, yes… I come off as a ‘home body’. But that’s because it’s what is easiest on me to do. Doesn’t mean that I don’t want to hang out. Come over and be a ‘home body’ with me… or if we go to a friend’s house, where I know I can just rest while interacting with others… it’s much easier to do than high activity plans.
Okay, I’m rambling now. I could probably talk about this subject for 10 days straight, but that would be a REALLY long article, now wouldn’t it?
Here is a song that I like to sing in my head or listen to when I’m EXTREMELY tired.
Sick & Tired by Cross Canadian Ragweed
Stay well & Happy Holidays!