As I sat and drank my coffee this morning while my toddler napped, I thought to myself: I can’t even remember what life was like before MS. I wonder what it’s like to live a life where you’re not constantly exhausted, and your energy depleted. I’m not meaning regular exhaustion from motherhood and life in general either. I’m talking MS exhaustion on top of exhaustion from motherhood. It’s insane for me to think that this type of exhaustion has been somewhat my normal for the past 12 years of my life. In fact, I can hardly remember a time when I haven’t always been tired. And, that’s when I realized it-exhaustion has become normal for me. There are so many days that I realize, I don’t know what life is like without being overwhelmingly tired. I do have good days occasionally, those days where I feel I have energy to burn. But, most days are just going through the motions in one exhausted blur. This past month has been especially hard for me, because as much as I love December and the holidays, every year December brings stress along with it. And, if you have MS, we all know what stress does to our bodies. Stress is that constant shadow, and when you give in it gulps you up. After a stressful day you can often feel like you’ve been chewed up and spit out…then comes the exhaustion creeping in like an old friend. After stressful days, my body gets to the point where if I don’t listen and rest, it will basically disown me. Stressful days lead to recovering and recuperating for weeks at a time. And with the exhaustion stress brings to my mind and body, every other part of my body feels it too. Stress wreaks havoc on what is already a weak immune and nervous system. Cue the back aches, cognitive issues, mind fog, emotional problems, and they’ll just have themselves a party on our account.
I try to vividly remember when all of these feelings became “normal” for me. When the exhaustion that would and can be debilitating for some, became just another thing I had to deal with. When the aches and pains became normal, the tremors, and the intolerance of heat… and, honestly sometimes if I think about it long enough, I do get down in the dumps. I would have never imagined in my younger years, that MRI’s, bi-yearly doctors’ appointments, taking shots, and pills would all just be an everyday thing. Life with MS is HARD. It’s unpredictable and unnatural. And, and it’s extremely unfair. There are days I just don’t understand why, in what is normally a genetic disease, I am the only one in my family graced with its looming presence. It angers me, and it frustrates me some days more than others. The days where I just so desperately want to get up and feel great are normally the days I feel my worse-as fate would have it. However, even on my worst days, I look around me and I still force myself to see the good–The good in that because I was diagnosed so young, my case is stable. I have to see the good in the truth that I can still walk, see, talk and think clearly. I even have to see the good in the promise that there may be a cure in my lifetime (or so we desperately hope). I even force myself to be grateful for the doctor’s appointments and the medication, because who knows where I would be without them.
My life with MS has been a constant roller coaster. It’s been full of tricky loops and turns, and just when I think the worst part is over, it comes at me full speed. Some rides are much more pleasant, and others are difficult, and more of a struggle. MS was never what I pictured in my life journey, but unfortunately, it is my reality. So, for now, I’ll keep riding that roller coaster called life with MS…and maybe if I’m lucky I’ll make it out of the theme park (or ride called life) with just a little bit of whip lash, but a plethora of happy memories to go with it. I refuse to let this ride scare me any longer.