Walking The Tightrope Between Rest And Activity
“What if I won’t be able to do it anymore?” That’s a question that nags many a person suffering from multiple sclerosis. You never know when you might wake up and have some function of your body stop working.
On the other side of that, in order to get through life, our bodies with their damaged myelin sheaths have needs that can’t be ignored. We often require more rest and less activity than most people. For me, living with MS is an exercise in balancing my body’s needs versus the fear that the unpredictable nature of my illness instills in me.
What will tomorrow bring?
Many people who get diagnosed with multiple sclerosis begin to notice small anomalies over time. Minor signs that maybe something is not quite right. Maybe their vision is a little wonky, or they feel some numbness or tingling, or maybe they notice that they’ve slurred their speech now and then.
For others, like myself, something much more pronounced happens out of the blue. The moment I first noticed something was wrong with me was pretty abrupt. I woke up and as I got out of bed, I fell flat on my face, my legs not responding to me. My symptoms ratcheted up pretty quickly after that and well, the rest is history.
The abruptness of that first exacerbation left a mark on me, one which makes me constantly feel like I need to do whatever I can, while I can because I never know when I might wake up one day and be unable to do it. I’ve actually had numerous relapses where I was fine one day and debilitated the very next, often with some key part of my body not functioning the way it should.
While I’ve often recovered, over time, the damage has added up, and I am no longer functioning as well as I once was. As time goes on, knowing that I already have so much damaged myelin, I know that any day could be the last day to do something. The last day to take a walk, or speak correctly, to see right, or even to be able to stand up. That fear isn’t always at the forefront of my mind, but it is forever lurking in the back, always there when I look over my shoulder.
Maintaining the right levels
While I’m always concerned about the day that may come where I suddenly can’t do everything I want, it’s not like I can simply keep going all the time. Because of MS, everything I do has consequences, has a tax to be paid.
This toll often comes in the way of rest. Hours or days on the couch or in bed, recovering from my previous exploits. So profound is my body’s recovery requirement, that I plan my days and even weeks around it. I need to budget in times where I know I will need to recoup and get back to where I was before I decided to do whatever it was I decided to do.
While these resting requirements are frustrating, I don’t really have a choice in the matter. Sometimes I can push a little harder, a little longer, but that means I will have to pay the piper an even larger sum later.
So, for me, living with MS is about constantly trying to find the balance between feeling like I need to do as much as I can before I can’t and making sure my body gets what it needs to keep going. It means picking and choosing carefully. It means planning appropriately.
It also means that neither side, my desires or my body, are ever completely satisfied. I constantly want to push through to take part in some activities, but then if I do, what if my body requires rest and something else comes along and I then have to miss that?
It’s a maddening tightrope that my mind walks and must walk often. The more you walk a tightrope, the better you get at it, but you also fall a lot more too.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
On an average day, how would you rate your level of anxiety related to multiple sclerosis?