Fatigue. It is one of the most debilitating aspects of having MS. Most people don’t understand just how brutal it is. It makes every simple daily act a struggle. It’s very hard to help people understand what it feels like. Often, when I mention fatigue when people ask what living with MS is like, I get responses that immediately show me the people I’m talking to just aren’t getting it. Well, a few weeks ago, my wife and I attended an MS convention, here in Nashville. One neurologist that we saw speak explained it in a way that I had never heard before. And I thought it was perfect.
Most likely, you have had the flu. Think back to what it was like at the worst part of the arc of the illness. Try to recall those moments of lying in a puddle of your own sweat, as your bladder signals it needs attention. That moment where your brain thinks, “Okay. I have to pee, but I don’t want to move. My body is too damn tired. I’ve got two choices here. I can either lie here and piss myself, or fight the weariness to crawl to the bathroom.” And the lying there, pissing yourself is something you actually consider as a viable option. That is what MS fatigue feels like. And it can last for days.
Imagine feeling like that, knowing you still have to do life. The world is not going to stop and let you catch up. You still have to get out of bed, shower, drive to work, and spend eight hours getting things done there. If not, you lose everything. You’d get fired. Without an income, everything else falls apart. You’ll lose your home. You will lose your ability to put food on your table. Most of all, you lose your ability to pay for treatment.
So, you have no choice. No matter how spent you feel, you push yourself to get things done. You have to. Otherwise, MS wins.
This state of mind causes a snowball effect. You push yourself through, but there is no light at the end of the tunnel. The fatigue is stacked upon itself, which makes each day harder to push through. Your mental attitude takes a dive. The smallest of negative situations infuriate you. Stress is multiplied on itself. Concentration is spotty. Food isn’t appetizing. People are fucking annoying as hell, even people you love. It’s like the fact that your nerves are literally exposed is rising to the surface, and making itself known. A figurative raw, exposed nerve representing the actual myelin damage that is occurring inside your body.
It makes everything harder.
It doesn’t help when people don’t understand it. They tell you things like, “You need to get more sleep. Go to bed earlier or something.” Or, “God, I know what you mean. I stayed out way to late last week, and the next day at work was miserable.” These misinformed comments would be annoying as hell on a good day, but when you are in the middle of a fatigue spell, they are rage inducing. These people don’t understand that no amount of sleep remedies the situation. There is no quick fix. There is just fatigue on top of fatigue, on top of irritability, on top of frustration, on top of depression. An unavoidable, as far as I can tell, snowball effect. Have I mentioned how much I hate snow. I do.
So, next time someone informs you that they have fatigue due to disease, don’t try to relate to their situation. You can’t. Don’t give us ‘simple’ life hacks to remedy the weariness. We’ve most likely already tried them. We are the ones with the disease after all. Don’t you think we’ve looked into this stuff? Yeah. We have.
My advice. Just let us know you wish there was something you could do. There really isn’t anything you can do, but it’s nice knowing you are there. Friendship and support is really all you can give. That is, unless you are independently wealthy, and want to become a monthly donor to the charity of me, there really isn’t anything anyone can do. Just let us be grumpy. We feel like a zombie, and we are liable to bite your head off for what would normally be no reason. We have good reason. We are struggling just to do what used to be easy. It isn’t us snapping back at you. It’s the disease.
Well, that’s about all I’ve got for today. See you next installment!