Or: Do What You Can, While You Can, So You Can Continue
Scenario - So you finally got your classmates/coworkers/friends to understand you have limitations. They finally stopped asking why you have a handicapped tag or why you have to take the elevator instead of steps. You breathe a sigh of relief...
The next day, you run into one of these newly-understanding people while out on a power walk. A week later, you use your handicapped tag when you both go to the mall...and suddenly your newly-understanding friend gets a smug look on their face and say something like "Last week you could walk 3 miles but today you can't walk from the other side of the parking lot? Yeah, right. I wish my doctor would say I needed a tag for when I'm tired, too."
And the emotional pain starts all over.
For some reason, in our world, it's all or nothing. Everything is black and white, no gray, no shading, no middle ground. Either you're fully disabled every day or you must be faking every day. Why is it so hard to get people to understand that chronic illnesses change day by day? So many factors affect how a chronic sufferer feels on a given day...the season, time of day, weather, emotional or mental stress, what you're wearing, what you've eaten, when you ate, how you slept, sometimes even how you were sitting earlier in the day! And that's just a partial list. That's WHY the motto is "one day at a time", after all!
I have good days. I want to be thankful for those days, but sometimes I can't shush that little voice in my head that says "better be careful who knows it". Teachers/professors are especially tricky with this one. I used to actually get nervous that if I walked across campus one day and a professor saw me, it would start a problem the next time I was a minute late for class because I had to drive between buildings or wait for the elevator...and believe me, this fear was NOT unfounded.
I have good days. I even sometimes have good weeks! I'm very very lucky; my doctors and I have worked together over the past few years to stabilize my conditions. In relative terms, they are very controlled, and progressing fairly slowly (delaying the inevitable has become a focus for me). As someone who used to have serious flares at the drop of a hat, I definitely appreciate this gift of stability. My flares were rough...sometimes lasting 2-3 weeks (not counting the gradual recovery period), and they included a whole range of miserable symptoms from complete exhaustion to muscle, joint, and bone pain that never let up, to incapacitating stomach pains. The extreme swings from high to low I had in high school would make a roller coaster look like a ride on a lazy river. It's not that I never have flares anymore, or that I feel good every day, but my flares are fewer, farther between, and often not quite as severe as they used to be. Instead of true 'flares', I more often just have a 'low' day where I don't feel 100%, but can still function in most ways. If the long term goal of sufferers is to find a cure for their illness, this stability is the short term goal of almost every chronic illness sufferer on the planet. And I've been blessed to nearly achieve it!
But that brings me back to the villianization of exercise and my opening scenario. Since I am in the most stable place I've been in most of my life, I have begun some light exercise I couldn't do before. I like to do boxing on the Wii game system...it's no impact, cardio, and works my core and arms. Since I need no-impact exercise I have an elliptical trainer, and aquatic workouts would be ideal. However, I can't swim, nor can I afford the money or time to join a club right now. So, the primary exercise I've been doing is good old walking. Walking is actually very good for me...I walk a good distance so I work on my stamina and the motion of walking helps my flexibility and range of motion. Naturally, my doctor is thrilled. My critics, however, are not.
As an invisible illness sufferer (and let's face it, one who puts herself and her illnesses out on center stage to try to raise awareness), I spend a lot of time trying to convince people that I am legitimately disabled to an extent and have a right to specific accomodations. When they see me do something 'normal', I lose a lot of the ground I've gained. But the exercise is PART of my illnesses! "Do what you can while you can so you can continue" is how I like ot explain it. I can't run, do jumping jacks, or take a step class. But I can walk, at least on a good day, and doing so will help slow the progression of my diseases even more. So I do what I can (walk) while I can (now), so I can continue. As it is, I face the possibility of needing a hip and/or knee replacement at a young age, and the risk of being in a wheelchair a lot sooner than the average person might worry about it. By walking (within reason, I can't push it too hard or I'll damage my joints instead of helping them), I am strengthening the muscles and tendons that are a risk of being damaged by illness so they will last longer. I'm also encouraging production of the fluid that lubricates and cushions the joint.
As a side note, for anyone unfamiliar with autoimmune diseases, this is how they work. With most autoimmune diseases, and unlike AIDS, the victim's immune system is actually OVERactive, and attacks normal, healthy tissue in their body. In my case, my body attacks my moisture producing glands as well as connective tissue. As a side effect of being so preoccupied with attacking healthy tissue, my body may 'miss' the things it should be attacking (like viruses), allowing me to get sick very easily even though my immune system is overactive. And again, personally, damage to moist tissue leads to easier infections as well (think of all the parts that help keep illness at bay in your respiratory system...they're nearly all moist tissue). This is why many drugs for autoimmune diseases are actually immunosuppresants - which of course also raises the risk of contracting a serious infection. Quite a cycle.
So this villianization of exercise experience takes me back to familiar territory. With chronic illnesses, a sufferer will find themself needing to learn some lessons over and over, and one of those lessons is to know what you need and live by that without appologizing. If I'm having a good day and go for a long walk, I should be proud and thankful, not ashamed and making excuses. It may mean a longer struggle to educate others on my illnesses, but it will also mean a longer healthier life for myself in which to do that work, which is clearly worth the effort.