Paying the price
“Paying the price” with regard to Multiple Sclerosis can refer to many things. From the very literal cost of medication (which continues to skyrocket, even though none are cures or even close to it) to the figurative cost of maintaining relationships, MS is a costly disease for sure. Today though, I want to talk about the price many of us pay to while trying to act normal or like our old selves.
One of the most common phrases associated with MS is “But you look so good…”, pretty much all of us have heard that skeptical comment at some point (sometimes that comment is achieved with only a slight head tilt and facial expression, but we still know what it means). You look normal, you’re out having a good time, how are you considered disabled? Why do YOU have a handicap placard? Are you just a big faker? Well, no I’m not, looks aren’t everything. I may look awesome but underneath that charming smile and sweet beard, I’m likely in a ton of pain. And no matter how bad I may feel at that moment, the aftermath will be even worse.
Most of you are familiar with the spoon theory, I am a big believer in it as an example of what it’s like with a chronic illness like MS. The longer I have MS, the fewer and fewer “spoons” (ability and energy to do things), I seem to have each day. As if that weren’t a big enough issue, the punishment for using that energy has become greater and greater. The normal MS pain and fatigue are more than doubled in the days following significant activity. That activity can be something like meeting friends at happy hour, attending a family party, or even recently, riding in a car for too long (something about the tiny vibrations in a long car ride scrambles my brain and makes life a nightmare at some point after the fact). Whether I am using my cane or not, any sort of walking becomes a strike against me. So sure, I’ll walk that far parking lot and probably even make it, but the next day I’ll be in bed all day paying for it. Like many with Multiple Sclerosis, I have become more choosy about what and when I do things. I think about things that most people take for granted. I immediately worry about the temperature, and then I’m almost always counting how many steps I’ll have to take in my head. Also, what’s the seating like? Where is the bathroom? How far away is it? Will I have to use stairs at all? All those little things add up to me.
The penalties involved with all of this, for me anyway, often include long stretches of burning pain in my legs, cramps and spasms in my legs, brain fog, speech issues, loss of movement in a limb, and an extreme level of fatigue. There isn’t a whole lot that I can really do when that happens other then lay there and wait for it to pass. That obviously gives me a lot of time to think about it and curse myself for doing something, something most people would consider minor and normal.
When just going to the store can cause you to be laid up with pain for a while, it’s easy to start saying to yourself, I’m not doing this again, I’m not leaving the house. I recently told my wife that I wished I could be in a medically induced coma or some sort of stasis for a few months, just to get away from what has become a very uncomfortable life. Here it becomes as much a mental game as a physical one. It’s tough but you have to go on, you have to keep living your life. That’s when you start to appreciate everything, you no longer take things for granted. You start to appreciate the little things, the smiles on your family’s faces, the jokes with friends, every drop of beer, and every cool breeze. Those are the reasons you pay the price. The littlest of things become joyous occasions because you have to work that much harder to keep having them. That appreciation of life is one thing me and my fellow MS Warriors have that not everyone does, and that’s not a bad thing at all.
Does your employer provide workplace accommodations due to your MS?