Living with Multiple Sclerosis (MS) is no cake walk, but I consider myself blessed. There have been months and even years where life was a nightmare, but the past few years have been much more stable.
Thanks to an effective, albeit relatively risky treatment, there are even days when I almost forget that I’m sick.
But then there are the Bad MS Days…
Last Wednesday was a Bad MS Day. After a relatively exhausting month of sick kids and the ensuing sleepless nights, a lingering sinus infection, and a cripplingly painful corneal abrasion and abscess in my left eye, I was already running on empty.
Add to the exhaustion a few seemingly minor stresses: missing my brother’s wedding, deciding on which elementary school to send our daughter to, considering the possibility of a potential move abroad, and learning that I won’t get to see much of my little sister this summer during my trip home…
It was the cocktail of fatigue, infection, and stress that finally did me in.
MS reared its ugly head and my body went on a full-out strike.
From the moment my alarm went off that morning, it was clear: I was closed for business. Down for the count. Out of commission.
Walking from the bedroom to the kitchen took every ounce of energy in I could muster.
When my little boy grabbed my hands for support as he jumped off a step, I nearly toppled over.
My hands were so weak that even gripping a pen took my utmost concentration.
As soon as the kids were off to school, I did something I never do: I went back to bed.
That was a bad sign, a very bad sign. I’m a busybody and always have a million things to get done. I may not have an office job, but I never go back to bed in the mornings. As in ever.
Two hours of sleep later, I forced myself out of bed and moved to the couch. As much as I had to do, my body would not cooperate. I was so weak, it felt as if every muscle in my body had gone flaccid. I was in a fog. I couldn’t think clearly.
I took a shower to try to make myself feel better, but that was a bad idea because it meant I had to dry my hair. Sitting down on the edge of the bathtub and brandishing a hair dryer that seemed to weight 50 lbs, I suddenly remembered why my husband had been the one to dry my hair all those years when my MS was at its worst. Just drying my hair was sucking every last bit of energy out of me.
My kids came home from school around 11:30am to find me laid out on the couch. I think I may have boiled some water to make them pasta or maybe my husband did. Honestly, I don’t even know. I was completely out of it.
As soon as my daughter was off to tennis practice and my youngest was down for nap, I collapsed on the bed, again. After two hours of sleep, I woke in a drowsy stupor and forced myself out of bed and onto the couch, where I basically stayed until dinner.
I don’t remember having a lot of intelligible thoughts on Wednesday, but I do remember thinking one thought, over and over:
Dear God, this can’t become my every day. Please don’t let this become my every day.
Throughout the day, I kept asking my husband, What is wrong with me? Why do I feel like this? I can’t function.
Of course, we both knew what was wrong with me: I was having a Terrible, Horrible, No Good, Very Bad MS Day.
On a Bad MS day, menial tasks become a Herculean feat.
On a Bad MS day, making it through your normal day feels like trying to run a marathon with a boulder chained to your waist.
On a Bad MS day, life is just too much.
I’m happy to say that, at least for the time being, I have more good days than bad. After all, that’s my goal in this battle with MS: More good days, than bad.
I know bad days will inevitably come, but I’m okay with that…
Because for every bad day I have, I learn to love the good days that much more.
Bonne journée à vous tous,