Syringomyelia 1 - Movie 0. A Propensity to Discuss post.

Syringomyelia 1 – Movie 0

Syringomyelia – 1        Movie-going – 0

Yep. Going to a movie lost out to syringomyelia (SM). Hubby and I went to see the movie Dunkirk and it was really good (click here for review) and it was really bad.

No, not the movie, but what seeing the movie did to me. After seeing it on Saturday, I spent all day Sunday, most of Monday and part of Tuesday on muscle relaxers, pain pills, a heating pad, and on the sofa recuperating. No, I am not kidding.

The movie was very intense and I spent probably 100 of its 106 minutes stressed out about what was going to happen and who might die and when the next bomb may hit. Tensed is not a way for me to spend 100 minutes. Or even 30 minutes.

Why didn’t I leave the movie, you ask? Why didn’t I stop watching? Quite honestly, because it never crossed my mind that seeing a movie was going to put me out of action for the next 3 days! Would it cross yours if it had never happened? No, probably not. But I know better now. I had even taken medicine as a precaution to sitting in the chairs at the movie, but even that didn’t help.

Syringomyelia sucks. Just saying.

Syringomyelia 1 - Movie 0. A Propensity to Discuss post.

Other than the pain, there are the “little” things.

I drop things. Sometimes my hand(s) just let go and whatever I was holding is on the floor. I don’t drink out of glass anymore, don’t worry!

I get vertigo at very inopportune times. Like one day I was fine and hubby and I walked into a Subway to get lunch. Ten steps in and the world shifted and began to spin around me. The teenagers behind the counter thought it was great that I was drunk. Until I told them that I don’t drink alcohol. That’ll shut ’em up quickly.

I can’t get to a word sometimes, even though I know it. I was talking to my dad one day about my eyes and was trying to say that I have astigmatism. I know that word. But all that would come out was augmentin. Even after he said it to me, I could not say it back. The next day, I could say it perfectly.

My balance is really bad. If I ever got pulled over and asked to do the DUI test, I’d never in a million years pass it. Except that I don’t drink alcohol, so there is that. (And no, I do not drive when I am heavily medicated.)

My legs and feet go to sleep. Most of the time without me knowing it until I try to stand up. It’s not a pretty sight, I tell you!

My family and sense of humor keep me sane. When I drop something, I just pick it up with a loud thank you that it wasn’t glass, or priceless. When I can’t come up with a word, I generally insert a nonsense or alternate one and those who know me just roll with it. When my balance is bad, I am so thankful for a hubby and kids who non-theatrically steady me.

My faith in God sustains me. There is no possible way I could handle this on my own, so I lean into my faith to help me through the hardest days and I know that I am loved.

So after SM won against the movie, I spent several days reading, watching a couple of no-stress-at-all movies on Netflix and resting. While I did take muscle relaxers and pain meds, the one thing that seemed to help the most was Amish Origins Pain Relief Cream. This stuff is magical on sore and tight muscles! I found it a couple of years ago at a Mennonite bakery that we go to often and the owner assured me that it helped. I have since found it on Amazon (the bakery is 4 hours away) and I still use it.

Syringomyelia 1 - Movie 0. A Propensity to Discuss post.

While I don’t generally post about my issues with SM, I do believe that it is very important to bring awareness to this issue, as there are so many of us out there struggling to live a “normal” life and not let SM control us. But it is an every single day kind of struggle. We don’t want pity. We don’t want unsolicited advice (sorry, we have lots of doctors giving advice). We don’t want to be left alone. We want your support. We want your love. We don’t want to be in pain.

But most of all, we want you to know that sometimes just listening to us rant, without judgment or attempts to “fix” us is the thing we would like most.

 

This post may contain affiliate links. I would never include an affiliate link on any product that I would not completely endorse. So if you choose to purchase through this link, I get a small payment that does not affect your price at all. And I wholeheartedly recommend these linked products!

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