Thursday, 29 December 2016

Pain and MS

MS is not generally a disease associated with pain, but as many MS sufferers will tell you, there is a pain component.

I have experienced the 'MS Hug' and the pain in my feet and legs, from actual pain, to numbness,  tingling and/or burning sensation.

As I have a generalized arthritic condition, I feel the leg and back aches from a changing gait. I found this article about the different kinds of pain one one find with MS and wanted to share.

Wednesday, 14 December 2016

A New Perspective

I was at my grandson's hockey game on the weekend. The stairs into the stands are brutal, as are the seats. I usually take the elevator to the top and sit in the last row, better view than at board level.

After the game I returned to the elevator to make my way back to the main level. Before the doors closed a man squeezed in and with a smile asked if he could ride down with me. I had my cane with me, so my need of the elevator was obvious. He, on the other hand, was younger, much younger, and gave all initial appearances as to being healthy.

I am never one to judge, been there, done that...the being judged part, not the judging. He must have felt the need to explain himself. "I have MS," he told me.

"So do I," I replied.

We then got into a conversation, as we were no longer strangers. And, as things work out, we have the same neurologist. His son plays on the opposing team, and they were from the city where I go to the MS Clinic. We were both of the opinion that we have a great doctor, and the clinic is great.

I learned he is on one of the newer drugs, that require daily injections, and has been for the last twelve years. These injections come with a cost of $1800 a month.That is a long time to be doing injections, as any insulin dependent diabetic would agree. He's now suffering the side effects of the drug, and it's causing him joint problems and pain.

This led to discussion of the cane and or walker. I admitted to a great reluctance to using the cane, which I am now very comfortable with, and the walker, which I am not. I use the walker to and from the car, when walking to the main building in my complex, but otherwise avoid using it in public.

My excuse is that I am usually going shopping and can use a cart, so taking the walker is not required. I gathered that my new friend was also reluctant to use an assisted device. And I can understand why.

This man is young, with an eight year old son. There are so many things he can't do with his son, because of his disease, the pain and the fatigue. He's had his illness for twelve years, so his son has never seen him healthy.

It made me think of one of the stories in the book "Women Living With MS" where a young woman talked about using the cane in front of her young daughter's friends at school, and the daughter being upset. I think this might be part of this man's reluctance.

I can understand how he feels. My grandchildren have only known me with MS. Though I was more active in the early years, the first couple are too young to really remember. They have accepted the changes, the cane, and the walker, as it is what it is.

But, I'm a grandmother, living alone, retired, so I can rest when I need to, before and after any activity. I am not a young father, struggling with a chronic illness, while working, and trying to live as normal a life as possible, for as long as possible.

My meeting put a new face to MS, and my heart goes out to this man, with empathy and understanding. I hope the treatment he's on slows the progression of his disease and gives him the time he needs, for himself, and for his family.