Tremors, Storms, & Coffee: Progressive Multiple Sclerosis

About two weeks ago I started having non-stop tremors. I’ve had tremors for some time now but nothing like this. My arms were shaking uncontrollably. My mouth shook as if it were four freezing degrees. It was frightening to say the least. At first I thought it was from the eighty push-ups I had done the night before. Modified push-ups but push-ups. As time went on I realized it wasn’t. I then chalked it up to stress – good stress – but stress (a lot of positive changes). This went on for days and the only relief I felt was when I was sleeping. Right before it started I felt a familiar feeling – one I only experienced before my other relapses. The left side of my face which is ordinarily numb had intense pins and needles from my forehead to my chin. A warning went off in my mind and for the past two weeks it’s been really hard. The pins and needles, the tremors, accompanied by extreme “new-er” weakness. I couldn’t make it down the steps to do laundry for two weeks. I feared this day would come as my legs have progressively gotten worse over the past few years. I’ve managed to build muscle on them but ms doesn’t care about that. It’s not a muscular disease. It’s a neurological disease, one that affects the brain and spinal cord which not only controls the muscles, but everything we do.
In the midst of this was Ida. Ida came through and flooded N.Y.C. including my neighborhood and home. The water, the sewage, the smell, the cleanup, what a mess. As bad as it was, I was grateful it wasn’t as bad as Sandy. It did bring back anxiety that I experienced during Sandy – ptsd – kind of. Ironic thing is, this was rain water not ocean water which in the past was a result of living so close to the ocean. Again, ironically, they’ve (the city) been putting in new sewers and such since Sandy which was how many years ago? Construction everywhere. What the heck is going on? Not new sewers that’s for sure. 

One day at a time I kept thinking to myself. Just get through today. 

The tremors have gotten better although still very much a part of my day. What can I do? Not much. It’s a result of damage to my cerebellum from multiple sclerosis. Sometimes I still can’t believe it. What can the doctors do? Not much. 

The weakness is improving although I haven’t lifted any heavy weight in a couple of weeks. I needed to take a break after every chore. Stretching and dancing (I use that word loosely, ha!) to ease the stiffness is all I’ve been able to do the past couple of days. I’m grateful. I find dancing around the house great exercise and uplifting. 
Was it a relapse? I didn’t think so but now that I’m improving I think maybe it was. I don’t know. To be honest, I don’t care. It’s not like there’s any medication that can be given to change things. Excuse my language but progressive ms is a fucking beast. There is nothing to prevent progression. We don’t hear much about it. Could it be because only 10% of people who have ms have progressive ms? Is there any money to be made in the discovery of a drug for such a small population? I don’t know. They formed a “progressive ms alliance” years ago and still nothing. Research, yes, research. Progressive ms is more of a neuro-degenerative disease than inflammatory like relapsing remitting ms. I just happen to have progressive relapsing ms – one of the 5%. Oh, they’ve changed the name. Well, not all go by the new names and this is the diagnosis I was given. One thing I wish these neurologists would do is be honest with us patients regarding our prognosis. They’re not doing anyone any favors by withholding the truth. Either they think that the truth would hurt so bad we would give up or they’re cowards and don’t have the guts to give devastating news. Either way, we need to know – everything. 

I used to hear the term “creeping paralysis” and it resonated with me. I remember thinking omg that’s it. It’s a burning, tight, stiff, harder to move feeling. It’s something that you have to feel to understand. I feel it every day. 

Just another day in the life of multiple sclerosis. 

Which makes me cherish every single good minute of the day. 

If I’ve learned anything thus far on this ms adventure it’s not to put things off. Do what makes you happy. Spend the money. Buy that thing you want to buy. Most of all, be patient with yourself. Be patient with others, they have no idea. How could they? I could never have imagined this. 

Oh the coffee! My keurig had the nerve to die during this time. I had a pretty copper colored keurig picked out as a replacement and then the tremors hit, and the storm hit, and I haven’t replaced it – and I don’t drink coffee now. Just like that!

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