I want to write something profound about MS, but…
Some of us have the kind of MS that gives us ‘hits’ or exacerbations that last for weeks or months or longer, then disappear and we feel more or less ok, until the next hit. And the hits are different for each of us. That’s why they call MS the snowflake disease: no two people with MS have the same hits, feel the same way. But just as snowflakes have something in common–frozen water–MS Warriors, as we call ourselves, have demyelination–damage to the protective covering (myelin sheath) that surrounds nerve fibers in your brain, optic nerves and spinal cord–in common.
But that’s not profound. That is something everybody with MS knows. And has.
Some of us have hits that never go away. They just kind of pile on over time, leaving us in pain, tired, exhausted, frustrated as we trudge through life… But hey, it could be worse. and it is for some of us.
For some of us, our MS has progressed to the point where we need scooter to move, are in wheelchairs, or can’t even get off the couch or out of bed. Mobility? A dream that occurred long ago.
Again, not profound. Just the facts.
Some of us are on meds that help minimize the hits. Some of us are on meds that help minimize the hits, but have dramatic side effects–like liver damage that could kill us if we don’t get off the meds. Some of us are on meds that don’t help minimize the hits, and may or nay not have damaging side effects. Some of us are on special diets that help a bit. Some are on special diets that don’t help at all… Some of us have tried experimental surgeries, that have helped a few of us, not helped others, and have killed some of us… And left us all (other than those who have died) with… MS.
None of us are cured, because MS is like love, and there ain’t no cure for love.
Profound? I think stating the facts, just the facts, is not profound at all.
Some of us continue to work. Some of us do less work than we used to. Some of us are on disability and do a bit of volunteer work. Some of us are on disability and do squat, because squat is all we can do. Some of us have no disability…. I don’t know ow we get by.
Some of us have lost partners, children and friends who don’t know how to cope with a chronic disease. Some of us have partners, children and friends who are quite supportive. So it goes,
Some of us have found sunshine on a cloudy day and can say something positive about how MS has shaped our lives. Not many of us. Some of us are depressed, because depression is a symptom of MS. Some of us are depressed because we f***ing have MS. Some of us are on an even keel. Some of us even find a modest degree of happiness.
None of us want MS. None of us did anything to bring it on.
None of us can say, or write, anything profound about MS. It sucks. It sucks. It sucks. It sucks to different degrees for each of us, but for all of us… it sucks.
I am writing this, and am thankful that I can still write. But my MS sucks. I will be out with my cane walking the dog shortly, and am thankful that I can still walk the dog. But my MS sucks. I am tired. I am in pain. I am tired of being in pain. I am tired of my MS sucking. But guess what? My MS doesn’t give a crap. It continues to suck.
I have written suck 10 times. Doesn’t matter if I write it 110 times, 1,010 times, 10,010 times… Not profound and won’t change a damn thing about me and my MS, about you and your MS…
I want to write something profound about MS, but… there is nothing profound to write… Or is there? What does profound even mean?
a great or intense state, quality, or emotion; having or showing great knowledge or insight
My MS is intense. I am emotional about it. I am knowledgeable about it. Even written a book about it: Everything You Need To Know About Multiple Sclerosis. So there we go. MS is profound. People who have it are profound. I have found profound about MS…..
And guess what? It still SUCKS!
Can you get any more profound than that?
If you disagree, please leave a comment and let me know. I’d love to be convinced that my disease had some positive qualities and did more than just suck. And hey, if you agree with my assessment of MS, you too can feel free to comment.
As for me, I’m going to pick up my cane and walk my dog. Because I may have MS, but it does not havew me. It does not yet have me. I have MS, but I still do what I can do. Maybe that is not profound, but it’s still living. It’s refusing to quit. It’s carrying on as best I can. It’s letting MS suck, because it sucks, but it’s not letting MS suck the last of life out of me. Don’t let it suck the last of life out of you….