I have the rare genetic mutation of MHE – meaning that nobody in my family, prior to me, has a history of it. This means that my parents went in completely blind. Back then, there wasn’t very much literature available on the subject and the doctors mostly said thing like “your guess is as good as ours!” when it came to predicting the long term effects.
My parents knew that I was experiencing pain from a very young age. No parent wants to watch their child experience pain, and as a result – they indirectly sheltered me. I was told “no contact sports”. This included gym. My doctors weren’t entirely sure what would happen if I broke a bone, so the best bet was to play it safe.
And so…I played it safe. I didn’t want to add to the worry my parents felt. I didn’t do contact sports; I rarely ran. I took it easy.
I’m a parent now myself, to two wonderful little boys who both have MHE. Each one of my boys displays symptoms in different ways. My older son seems to have more pain days. I can see it in his eyes, in the way he’ll go from moving nonstop to sitting unusually still. Those are the days when he is emotional and quiet. My younger son gets angry on his bad pain days, because he is three and unable to express or understand what is happening.
Upon hearing the diagnosis for my sons, I decided something: I wasn’t going to stand by and shelter them in the name of “playing it safe”. I was going to let my kids play and let them run and let them fall down. Why? Because being sheltered didn’t ease my bad pain days. It didn’t take away the pain, it didn’t magically make me feel better. If anything, I felt worse for not doing the things I wanted to do.
It’s important to know your limitations, and it’s important to take breaks – but it’s just as important to keep moving, to keep doing. Even if it’s one small thing a day. I would rather do something I enjoy and pay for it the next day, than not do anything I enjoy at all.
A couple of years ago, I moved next door to a wonderful girl named Candice. Candice suffers from Ehlers-Danlos Syndrome, another pain disorder. She is no stranger to daily, chronic pain. She experiences worse pain on damp days, on cold days, and on days after she’s “done too much”. But Candice has the same mindset that I have: keep moving.
Candice and I are both highly independent people and we hate relying on those around us to do things for us. We like to get things done ourselves, because it feels so much better than asking someone else to do it and “taking it easy”. When we wanted to clean up the backyard and do a dump run – we did. We loaded up my truck and we went. When Candice had huge ideas for our backyard garden, we both contributed just as much as the abled-bodied people to make those ideas a reality.
We joined a gym together, because we both wanted to see what would happen if we worked slowly to build up the muscles that don’t often get used. People with chronic pain use different muscle groups. The muscles in the outside of my knees, for example, are completely underdeveloped, which is why my knees sort of collapse inward and touch each other when I stand or walk. Since joining the gym, I have worked to build up the muscles on the outside of my knees so that I can support my body better. Guess what I’ve found? Walking is a little easier. I still have a lot of work to do; those muscles are still very undeveloped, but I’m seeing an improvement and that’s keeping me going.
The daily pain will never go away – but that being said, letting it defeat you isn’t going to help either. I can attest that your mental state will improve when you keep moving. You don’t have to move mountains every single day, but make sure you do something that you LOVE to do at least three or four times a week.
So, keep moving. Keep doing, and keep your chin up because you are a warrior and a survivor.