When I Took 'a Leap too Far' Living With Chronic Illness
I recently posted a picture on Facebook of my first outing on my mobility scooter to our local shopping center. It was a momentous occasion. The adrenaline of being able to move more than 50 meters kicked in and before we knew it 90 minutes had passed.
It was a lovely afternoon and I don’t regret it for a minute. So many friends and family who saw my post on Facebook were excited to see me out and about. Expectations that this was a whole new beginning for me were expressed in loving comments. I so appreciated every one of those comments and the spirit in which they were written.
The next day I felt reasonably OK. I think the adrenaline of having achieved this huge milestone was still running through my veins. I even managed to color my hair the following afternoon, although once I started I began to realize I was probably pushing things just a little.
The second day after my outing was a huge wakeup call. I couldn’t move. My legs were in so much pain it was as if they had re-broken. The muscles were so fatigued they couldn’t support my weight. My whole body felt like it had gained 100 kilograms and the inflammation was rampant throughout my entire body.
I had taken a leap too far. My own expectations after purchasing the mobility scooter and the expectations of others who were willing me to be more active and mobile and have something of a more “normal” life, were driving me to push beyond what my disease would allow.
It’s a week since that outing and I have struggled more over the past seven days than I have over the past two years. My quality of life at home has been terrible. Before pushing myself to get out and about on the scooter, I was able to enjoy short car trips to local cafes or sit in the park and take in the beautiful views of the Bay. I was able to putter happily around my home independently, cleaning in small bursts, sitting in the garden, writing at my desk, chatting on the phone and most importantly providing support to the members of my online forum.
I’ve tried to continue to do some of that over the past seven days, but it has been so limited and I am still not able to get the pain under control. It has all been a leap too far.
So what does this all mean for my future adventures on the mobility scooter? It means lowering my expectations. It means not feeling guilty if I can’t get out on the scooter at regular intervals. It means being content to use it, not necessarily as a leisure item but as a transport means, for important or special outings that require me to get to from A to B when I can’t make the distance on crutches.
My bone disease attacks my muscles as well as my bones. It causes my bones to die but it also causes muscular atrophy and avascular necrosis. The vibrations of the scooter unfortunately aggravate these issues. In conjunction with an occupational therapist, we have made as many adjustments as possible to the scooter to help alleviate these consequences, but we all knew we couldn’t eradicate them entirely.
Living with a chronic illness means living with realistic expectations. I will always test my limits… that’s just who I am and what I’ve always done no matter what life has thrown at me. However, I have also learned to be content with whatever state I find myself in.
I will get back on the horse, so to speak, but not tomorrow or the next day or maybe not even this month — and that’s OK. I will also make sure that my next adventure on my scooter will be no longer than 30 minutes and I will carefully assess how I fare afterwards. Slow and steady will be my approach.
My “normal” is so very different from what others can or can’t do. It’s unique to me, but then that really is the case for everyone. After all what is really “normal?”
What is important is being happy and having the best quality of life possible. I have that in spades, and if I’m not posting photos on Facebook of me out and about, rest assured I am happily content at home doing the things I love, things that are within my limits.
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Thinkstock photo by Tharakorn.
Sam retired early, from a successful Executive Management Career in financial services, due to chronic disease. She has a rare disabling bone disease, Rheumatoid Arthritis and a permanent colostomy. “When health gets complex, I’ve come to realise it is really important to find others who are also battling multiple issues, to share the never-ending complexities that arise”. As Sam’s disabilities progressed she started a blog called, My Medical Musings. She also set up an online support forum for anyone wanting the hand of friendship as they journey an often lonely and difficult path living with the effects of chronic disease. “Both my blog, My Medical Musings and online support group, Medical Musings with Friends, are a place to laugh, cry, share and vent together”. Sam is a member of the Chronic Illness Bloggers Network and she is passionate about promoting and supporting other chronic illness bloggers. You can follow more of Sam’s story at her blog "My Medical Musings" https://mymedmusings.com/ She is also author of the book: "My Medical Musings, A Story of Love, Laughter, Faith and Hope; Living with a Rare Disease. More details about the book can be found on Sam's blog.
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