I’m not a huge sports fan but I do enjoy football and I often listen to it on the radio. The other day, I heard someone reference the saying about football being a game of inches, although I think sports fans would argue that success or failure in most sports can come down to inches. The phrase caught my attention because it describes how I sometimes feel about having a chronic, progressive illness for the last twenty-five years – losing ground bit by bit.
This summer, V attended a two-night invitational at WWU for possible incoming freshmen. I was with her for the first afternoon and we took a tour of the campus along with a group of other people. I was immediately made me slower than the other tour members, who were being hustled along by the tour guide. I had to ask her to slow down, drawing attention to myself, which made me a little irritated, but I had no other choice.
As we continued the tour across campus – which is not large, but was large enough to wear me out – I started to feel real fear that I wasn’t going to make it to the end. I had to turn back early, and as I walked along, more and more slowly, I had a PTSD flashback to my senior year at WWU, and how it felt to struggle across campus. It’s been a while since I’ve been so concerned about whether I was going to make it somewhere or not.
I’ve just generally been feeling apprehension about my current state of living, and my possible future. I already know that it’s getting a little too hard to live by myself. My husband was away this summer for three weeks, and I found myself exhausted at the end of a day of regular activities plus all the household chores he usually does. That’s a lowering realization right there – the fact that you can’t completely take care of yourself. (Especially for a control freak like me!)
I’ve noticed that I’ve never been as afraid as I am now of how easily-damageable I might be. My friends have a dog with a lot of energy, and whenever I’m with him I’m afraid he might knock me down or break me. He has barreled into me a couple of times and I’ve had to do an immediate systems check to make sure nothing was fractured. And the thing is, I don’t know that I’m more fragile – I might be just fine. But the thing is that I feel more fragile.
Although I can point to some major health events and relapses that have set me back physically in a way that I know I won’t recover from, most of the time the losses are less noticeable. I have some finger and toe joints that have quietly fused and become immoveable because I wasn’t paying attention to the disease activity. A few years ago I realized I had lost a lot of range of motion and ability in my shoulders until it was too painful to fasten my own bra strap. And my knees have been terribly stiff and sore.
You don’t even realize you’re surrendering ground; it slips – or is taken – away by inches and you notice you’re feeling a little more tired than you used to, or that you can’t do something you’ve always been able to do before. There are battles being fought in your body daily, with more tiny capitulations than you may realize until you’re stuck in no-man’s land.
So what’s the solution to this problem? Well, personally I think it’s two-fold. You have to grieve the battles you’ve lost, the ground you’ve given, and the small surrenders you will continually be making – probably for the rest of your life. This is a hard one and occasionally it gets the best of me, and gets me down; however, it is necessary to acknowledge what is happening and feel the attendant sadness.
The other thing is a little more pro-active; do something about it! I already go to the gym three days a week but I’m considering maybe going more often. In addition, I’ve added a little weight training to my 45 minutes of bike riding and stretches. I also do gyrotonic movement, as I’ve mentioned before, which has done wonders for my flexibility, my core strength, my circulation, and joint mobility. Plus, I just try to move throughout the day, and be as active as possible.
I got steroid shots in my knees a month ago, and while this isn’t always effective, this time it really helped – drastically reducing the pain, swelling, and stiffness. It’s been something of a game changer, allowing me a break from the intense, exhausting pain, and letting me be more mobile. I’m also working with an amazing acupuncturist, and a nutritional healer, who tweaks the supplements he gives me depending on what’s going on with me.
I don’t think anyone with a chronic, debilitating illness ever fully comes to terms with the losses and the surrenders; it might be a little too much to ask, given what you’ve already lost. But you can’t let it keep you from living whatever life you can manage to enjoy. Go have fun, do something you love to do. You have to be philosophical – after all, we can win some battles, but we all eventually lose the war. Let’s do as much as we can before that happens.
I’m going to keep on doing what I’m doing, and hope there’s enough I can do to ward off some more losses, but I know they’ll sneak up on me. I have a chronic, progressively worsening illness, with all that means. What I am is what I am – lame and all – and I’ll hold my ground as long as possible. I’m still a little afraid of my possible impact-to-fracture ratio, but I can’t let it rule my life – or rule out playing with the dog, because playing with the dog is – you know – fun.