In my 44 years on this earth I have read a lot of diet and exercise plans that range from the dangerous, the hysterically funny and the downright bizarre. My hubby is an ex fitness trainer so we are both well aware the role that diet and exercise plays to maintaining good health. But what if you have an chronic, painful, cruel, and very real illnesses which makes diet, mobility and exercise a living nightmare? The internet is groaning under the amount of miracle diets that promise to restore health, vitality, mobility and cure any and all diseases, however if that were true we would all be cured by now!
Every night my hubby puts my body through stretching and range of motion exercises which sometimes really makes me doubt his love for me. It can be excruciating! Every day he will help me walk as much as I can (If I can). Everyday we try and watch what I eat (if I can eat) and we talk about respecting our limits and ‘pacing’ so I don’t cause myself more pain or, worse still, set off another attack. If I ever work out where that limit is, I promise you I will post what it is! In the mean time we try our best and hope.
One night after I struggled to do some leg lifts and stretches while my husband watched me intensely as I was pushing myself, creaking, cracking, popping and crying and he said “Never in all my years as a trainer have I seen someone push as hard as you do, through the pain that you go through”. Why do I do it? I do it because I want to do whatever I can so that I can still have some physical life and physical presence. I don’t want my muscles to atrophy and have even more challenges to cope with. I am also hoping that I can ‘retrain’ my bodies nerves to move and co-operate so I don’t experience as many times when I can’t move my limbs at all. Always hoping. Always trying.
I see so many documentaries on television where they feature people with Autism who are running marathons, asthmatics swimming the channel and even Climbing Everest with prosthetic limbs. The able bodied world looks at these examples and it feels as though I am being judged negatively by comparison because I struggle to walk, I don’t win marathons, I can’t climb Everest and I probably will never swim the channel;Regardless I still do my utmost everyday. Imposing these examples on ALL sufferers is wrong and it feels like I am being told “You’re really not trying. You’re not pushing hard enough. You are mentally and physically weak.” How is this helpful or even a realistic representation of the many of sufferers who have faced slow and debilitating progression? It sends a very wrong and dangerous message for the rest of the Autoimmune, disabled and Chronic Illness community.
There are many sufferers who were once athletes, some were successful business people, some of us had highly paid roles, others were university professors. I hardly think we all just decided to one day check out on our lives, and our level of disease activity has nothing to do with our character, will power or intelligence. After all we don’t judge able bodied or healthy people in our lives for not swimming the channel, climbing Everest or winning marathons. We have to accept people as they are and that’s all we ask in return.