The price we pay
Fatigue found me. Pretty suddenly there isn’t enough oxygen in the room, I find myself breathing more deeply, a nauseating bait for my panic. I do my best to breathe through it, to become the puddle I experience myself to be, becoming quickly absorbed by the couch cushions.
It was my own fault, I’ve had a busy weekend. My weekend was not busy, not by any stretch, but when you have MS or indeed any chronic illness you have a limited pool of energy before fatigue punctures the hull and if you’re still bobbing on the surface it’s a slow inexorable sinking to the depths, or if you’re in too deep you just kind of… implode.
This weekend I spent time with my niece, watching her play football and hanging out at the beach, and had a mini panic attack when another football spectator, I guess you’d call her a soccer mom, croaked an introduction in my direction before wiping her nose on a well-used tissue. To most, a cold is an inconvenience, to me it is a delayed infusion, the chance to trigger a relapse, the possibility of overwhelming my immune system to make a close friendship with my organs.
And then I went out for cream tea with some of my past students, a gift from them to us to say thanks, generous and warmly received. It was wonderful to spend time with them as always. The rain was strong, though, and that made the paths impassable by wheelchair and the Hotel Du Vin in Winchester is beautiful and at least seemingly totally inaccessible, with steps both outside and in. So I decided to walk the distance with my cane, and the energy I had was totally expended by the effort.
Hey, I’m nothing if not ambitious.
So at home I rested. Fatigue, though, isn’t really akin to tiredness and while a sit down when tired is a satisfying, restful experience, sitting down with fatigue is far more akin to sitting by the toilet between bouts of sickness; it’s all you can do, it’s deeply unpleasant, and you can’t get comfortable. Sure, when you’re sitting by the toilet you’re technically resting, but resting is enviable, and no one envies the slump over the bowl.
But I have found a way of thinking about these moments that make them a touch more tolerable. Rather than thinking about the experience, lamenting how bad I feel, worrying about what this means for how bad things have become, I think about the awesome stuff I got to do for which this is the price. I got to spend time with friends, got to have cream tea together, got to take some photos with family on the beach, got to see my niece score the only goal from her team that match. I got to hug my niece and tell her I love her.
This is the price, but it is a small price to pay for those experiences. This way of thinking shifts the locus of control to me. Yes I’m in trouble, yes i can’t walk right, yes my bladder is a rogue agent trying to undermine my authority, yes I am a puddle on the couch, but this is the price we pay… and you know what?