Today is MS day and I would like to say that having neurological diseases are some of the most challenging diseases I have ever encountered. Why? Because of the unpredictable nature of them and the many ways they can affect everyday life.
For example. I am currently sporting bruises from where I have fallen over, not because someone has tripped me or pushed me, but because for no reason at all I will lose my ability to feel or move my legs. They may also become weak and contort in the most painful ways; also known as spasticity.
My vision will come and go and also become blurry during time of heat and exhaustion. Therefore I must always try to stay cooler and not exert myself too much.
And the fatigue! Like trying to run through wet cement.
I am also prone to swallowing issues and I will become unable to swallow for periods of time, making it difficult to eat and drink.
The nerve pain and neuropathy is truly awful! The feeling of electric shocks down your limbs or a blow torch on your skin. This can come and go without warning and can be extremely challenging to control.
For someone like me, who felt embarrassed of being in a wheelchair at first, the challenges were very real. However, like many people, I had to come to terms with that, but it’s still something I wish was not my reality. I am sure most people would prefer not to rely on a wheelchair to move around.
When I was younger I remember the feeling of walking through those carnival tunnels that tipped and moved while you were trying to make your way through them. Or. When trying to walk around on a small boat in rough seas. This is my daily existence and there is no cure. It is also the reason why I can fall over and can no longer drive. Balance issues are very common.
This year I will go to a urologist to see what can be done for my bladder dysfunction. It is quite difficult when you are forced to go to the toilet at least 10 times a night or have constant ‘accidents’ because the nerves that control your bladder don’t work properly.
Put simply, the brain is the most important signaling device for almost ALL bodily functions, even the ones that you are unaware of. And it is common for me to have irregular breathing and heart rates, which will happen without notice.
Yes. Neurological diseases are NOT easy and there are so many symptoms that it is almost impossible for me to list in this piece but there are also the most wonderful, brave, hard working, kind, caring and humane people you will ever meet who are affected by these diseases, and I feel so blessed to meet them.