Yesterday a dear FB friend asked me if I had taken my Facebook page, “Pug You MS” down. “Yes, I really don’t want to talk about ms anymore”, I replied. And boy did I mean it. I hope I didn’t come across abrupt I thought to myself, I just can’t stand it (ms) anymore!
I don’t want anything to do with it!!!
If only it were that simple.
I don’t want to talk about it. I don’t want to deal with it, and I certainly wish I didn’t have to live with it – but I do. I don’t live my life around ms. In fact I’ve been purposely living as if I don’t have a progressive disease called primary progressive multiple sclerosis (with activity) and very happily I might add.
I love working out, building muscle, and feeling strong. I walk my dogs now and naturally they love it! I struggle at times but overall I feel great.
In the spirit of intentionally and purposely living as if I don’t have ms, I decided to paint my living room, dining room, and hallway. Not only did it desperately need to be painted, I needed to do something! A pandemic project! A pandemic project sounded great. I mean years from now I can tell the story how I painted the house during the pandemic. Right?
I started with the small hallway and although it took me eight hours, upon completion, I had a sense of accomplishment that can’t be bought. It looked absolutely beautiful to me.
As beautiful as it looked, it was a little too bluish for the living room so I decided to go back to the paint store and get a different but similar color. I decided on a “greige” for the living room and dining room. Mission completed. Now I was on a roll!
Knowing my limitations and knowing what can happen if I do too much too fast, I decided to paint a wall a day and for the most part stuck with it. Each day became more difficult. Getting on and off the step ladder while trying to keep my balance (thank you cerebellum lesions) became increasingly harder and even a little worrisome. “Well, I have to finish” I said to myself.
And I did.
It looks beautiful. I love it.
Unfortunately, I was unable to avoid the nerve fiber fatigue and I’ve been in excruciating pain since, losing some mobility in my hand, and some other issues that (hopefully) are temporary.
Was it worth it?
YES, it was.
That’s the thing about ms. There’s a price tag for doing things that we did so easily “before ms” and some things are priced heftier than others.
A walk to the deli with my dog costs two days of no walking afterwards. Cutting the lawn costs the following day. A paint job costs more. How much is to be determined although I am starting to feel better this afternoon.
Doing neither, the price would be higher, much higher.
Nerve fiber fatigue explained by The Multiple Sclerosis Foundation: Electrical information in the brain and spinal cord is normally transmitted quickly and efficiently across myelinated nerve fibers. When nerve fibers are stripped of their myelin (demyelinated), these signals are no longer transmitted quickly. With exertion and/or heat exposure, the electrical transmission may stop altogether, a phenomenon called conduction block. Rest and cooling will put things back in order. It’s important to know that exertion and heat exposure are not causing any permanent damage.
From the JAMA Journals
“Our observations, combined with those of others, suggest that widespread axonal dysfunction is associated with fatigue in MS,” the authors write. “It may be hypothesized that diffuse white matter [brain] disease translates into an increase in the central nervous system effort required by a patient with MS to perform the same activity as compared with a disease-free subject, with resultant fatigue.”
Thanks for reading.