Fatigue is one of the most common and hated symptoms of multiple sclerosis (MS) affecting around 80% of patients (according to the National Multiple Sclerosis Society). It has become such a constant and debilitating part of my life that I honestly can not remember what it feels like to not have it; I can remember being able to go-go-go before MS but I can’t really remember how it physically felt to not have the weight of fatigue on my back from the moment I wake up till the moment I fall asleep. In the past, I have talked about the different types of fatigue (such as lassitude) and the possible causes but what I want to focus on today is one of my least favorite predicaments; feeling horribly fatigued all day and then spending the night as an insomniac.
If you have MS I am certain you have found yourself in this very situation; after a full night of sleep you wake up and already feel horribly fatigued. You spend the day pushing through it while wondering why you feel so tired after sleeping so well. Towards the end of the day you give up on trying to fight it and decide it’s time to go to bed even though it’s a little early; it is taking too much effort to even just lift your arm to rub the eyes that you can’t even keep open anymore! Every part of you feels dead! Then you crawl into bed and let out a sigh of relief; you can finally let yourself just slip away into the abyss of sleep where maybe a nice dream will fill your head for the night. But apparently your brain did not get the memo; even though you feel like you lack the energy to even turn from side to side, move a leg or move an arm your mind starts racing!
All sorts of thoughts consume you and instead of the small flame that is your consciousness slowly dying out it burst into a wildfire of random thoughts that keep you just on the edge of still being awake and falling asleep. Thoughts ranging from “I forgot to take care of the phone bill” to “what was that guy’s name again? George? Jeff? James? It started with a ‘j’ sound… Gerald?” to completely random thoughts like “what was the name of that star they were talking about on that science show? Something Centauri… Alpha? Naw, it was something else. I should look it up on my phone so it doesn’t bug me all night – but I don’t want to get up and turn on the light because then I might have trouble sleeping, plus I am just too tired to get myself out of bed… I’ll just look it up tomorrow” and for a split second everything grows quiet. Finally! But then your insomnia fueled thoughts sneak back in – “how far was that star from Earth? 4.25 light years? No, 4.24… Why do I even care? Wait, light years are weird, it sounds like a unit of time but it’s actually a unit of distance! But how far is a light year? Millions of miles? Billions? No, billions would be too far – or would it? Wait, I am doing it again! Why does this matter? I honestly don’t even care! Oh my gosh! Just shut up brain, go to sleep!”
But the thoughts don’t stop and eventually you open your eyes to look at the clock only to see the red glow of digits informing you that you have been lying there listening to your random thoughts for hours. How? How can you still be awake? You are just so exhausted! Every part of your body has given up and shut down but your brain is still ticking away. At this point, you wonder if you should get up and just take something to help your brain turn off but it’s so late that if you did take something it would last into the morning and there is a chance that instead of sleeping in you will still wake up and just feel groggy all day. But suppose that was not the case, suppose you actually could sleep in and get your full 8 hours? Well, now your sleep schedule is all screwed up so when the time that you normally go to bed comes you are still full of mental energy and can’t sleep! You just can’t win! It’s like the energy level of your brain and the energy level of your body are never on the same page!
Are you often faced with the problem of being physically fatigued but mentally wide awake? How do you deal with the combination of fatigue and insomnia?