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Living with Cauda Equina Syndrome

March 22, 2018

 

What do you do for fun since your diagnosis with cauda equina syndrome (CES)? The one thing I love to do is swim. I had my surgery on February 26th, 2016. It’s been a long road, but now I’m able to accept what has happened and go on with this thing called living.

 

Granted, I still avoid going to certain places, but I’m beginning to venture out more, and am realizing that I can still get things done, but it just takes me a little bit longer…. Actually a lot longer, but I seem to be the only one timing myself.

 

Yesterday was perfect weather here in sunshiny Florida. It was in the 80’s, not a cloud in the sky, and hot as heck with a gorgeous breeze. I could not resist!!

 

Luckily we have our own pool in our backyard, so I can look like a complete spaz, (which I believe I do), in order for me to lay out. I used to love lying out on my lounge chair, but I can’t get up out of it anymore. I tried it last year, and my husband was home to lend me his hand to pull me up. My legs just don’t seem to have the strength to be able to stand up out of it. So, now I’ve resorted to using just a beach towel and lying on the ground.  

 

Getting down is no problem, but getting up is a bit tricky. My right foot has foot drop, and both feet are pretty numb. To stand, I’m on all four’s and in the goofiest position, but I can get up by myself. I also have two little patio chairs. I use one of them to walk down the steps to get in and out of the pool. That’s a biggie, considering the year after my surgery I was using a towel to scoot across the pool deck just to get to the pool.

 

Anywho, I put my suit on, grabbed my towel, loaded myself with oil, and laid out nearly all day.  It was awesome. I am tan. Mission accomplished, but not without any mishaps. After all, this is all trial and error on my part. Yesterday was an error I won’t be making again.

 

The weather here is gorgeous, but the pool water is still cold from our little cold snaps, as I do not have a heater. I wish I did. Last year I did not have cold and hot sensations in my legs, all the way to my hips.  Well, I discovered that changed. 

 

It got really hot out, so I decided to swing my legs over the ledge of the pool. I sat there for awhile just swinging my legs around, getting into all of the silly exercises that I come up with just to stretch my muscles, and get my feet and legs going. By now I’m thinking the water is nice (I can’t feel the cold up to my knee’s), so I decided to do the next best thing, which is to stand on the steps and really get into doing different exercises. I scooted over to where the steps were, and got in. 

 

The steps to the pool aren’t a ladder. They are nice, big round steps in the shallow end. You can stand on them and do all sorts of crazy exercises, like squats. I was really feeling it in my quads. I did tons of exercise!! Then it got hot and I had a brilliant idea…

           

I thought about when I swam last year, and how cool it was to be able to go in the water without feeling the cold. How I took advantage of it last year, and just went in with no “inch by inch” to get my tummy wet.

 

I exercised so much that I was really hot, so I decided to stand on the bottom step.  What a big mistake. I felt icy cold water hit the backs of my thighs, and it was all over. I was in the freezing water. That jolt made me get into a position that there was no saving myself. Now I know. I got feeling back behind my thighs!! 

 

Obviously that’s a new change. Good to know, as I won’t be making this mistake again.

 

For now, I’m just going to continue to enjoy the sunshine, and wait till the pool warms up. The pool is my fun. This is where I feel whole again. Like a mermaid.

 

What do you do for fun?

 

 

 

 

 

 

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