I was asked to write a blog about living with a chronic condition, by Lisa Copen who runs a group called Invisible Illness and a group called the Sunshine room, so here it goes.
Living with a condition like a Neuromusuclar disorder along with the conditions that are not so difficult can be challenging, and on the good days when I do not require a cane, or my scooter, and they see my handicap placard, they come in and look as if I am faking it, little do they know that walking any distance, especially on any parking lot is unstable for me, it does not take much for me to go from having a good day to landing hard on the ground.
I have been battling this condition for a long time, my whole life really, because long before I was tested for a NMD I had hip displacia, along with dyslexia and dyscalucla which are not related to the Neuromusuclar disorder, but I have learned that a postive attitude and enjoying life are as important to my health as the medications I take, and even more important is the fact that I have faith in the Lord. Without faith I do not know where I would be.
I began taking Yoga, though I am missing today, because I ended up getting my brothers cold, but the yoga is adapted to each persons limitations and needs, and both my doctor and her nurse attend so that definitely relieves any fears about being hurt. In fact it is my doctor that suggested it, because I wanted a way to deal with the pain and not having to medicate any more than I already am.
My condtion also has left me with a weakened bladder, so I take several pills a day for that alone, one to prevent the UTI's that often accompany those who deal with conditions of the bladder, and one to relieve the pain and spasms! I only recently found a doctor who did not treat me like I was just making it up, that it was all in my head. Even the Neuromusuclar specialist I saw several times, treated me in a condenscending way, so I refused to go back to that particular doctor. Dr Hope, the doctor I like alot is getting me into a specialist at Stanford so I can get a better idea of what exactly is going on because Neuromusucular disorder is a very broad term, because in the Neuromusuclar family there are over forty two different conditions with varying levels from mild to the most severe. Mine falls somewhere in the moderate range, and it is progressive, thankfully not the extent of Duchene's or ALS though.
I decided early on when I began working with children and when dealing with my nieces and nephews I wanted them to understand, that there are going to be some days when I can't be as active as I like, and it has nothing to do with them. Even when working with the children at church I know when it is time to sit down, and I let them touch the braces, and Amber has driven the Motorized chair around the room. Amber is old enough to understand so I let her, at twelve I want her to understand that we are all made different. Amber herself suffers from Ear and heart trouble and a very mild case of Cerebral Palsy.
I've been asked a hundred times over if I had some kind of Pollyanna complex, but the truth is like everyone else with any sort of sickness I get tired. I also know that I can not sit around feeling sorry for myself, and I was and am determined to beat the odds. In many ways I am, I can still walk, I have Asthma, but my heart is good, which is a big worry for anyone with a NMD, and I have written several books four of which are published. I find that when I am active, I am giving myself the strength and stamina I need.
Copyright Michelle R Kidwell