How Did I End Up in a ’60s Cold War Spy Thriller?

Enduring nights under bright light, thanks to living with MS and lymphedema

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by John Connor |

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The constant light in my cell burned through my eyelids all night. Every night for days now. Prostrate on my back, I couldn’t even turn over to get away from it.

Why me? I knew nothing. Wasn’t part of any organization. Had no power. Couldn’t influence anyone.

How did I end up here?

I couldn’t walk. Had they drugged me somehow?

No, I’d done this to myself, I realized blearily.

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My immune system had started attacking me at some point. I had no real idea when. There’d been several watch-smashing falls and another that required stitches in one eyebrow. My diagnosis of multiple sclerosis (MS) came in 2009, but in 2006 I’d had clinically isolated syndrome, which had a devastating effect on me.

Briefly, I’d been playing tennis and dashed — in all my plump, middle-aged Roger Federer fantasy pomp — to retrieve a drop shot at the net. Made it, too, but then just toppled like a dropped sack of tubers on the unforgiving tarmac surface. It caused a type 5 acromioclavicular joint (better known as ACJ) dislocation. This is one of the most severe shoulder separations you can get and usually requires surgery. Mine required two, and I was in chronic pain for the next three years.

Afterward, all was better; the pain was gone. Then just a few months later, I had a full-blown MS attack and my subsequent MS diagnosis. So all these years later, why did I suddenly feel I was in a Cold War movie? I’d had many nights under that blaring bulb just above my head. It had gotten to me.

I wasn’t being interrogated by the KGB. It was far worse: My iPhone had a complete software failure of some kind. No apps worked. It was still able to take pictures, though. So I was somewhere at the turn of the 21st century. Only I couldn’t even play the game Snake. I hadn’t thought of not catching my own tail for years. Now I had well and truly swallowed it.

I’d finally sorted a memory problem on my computer that had been plaguing me for months. Feeling cocky, I tried to upload a massive music file onto my iPhone. But I seem to have killed it.

What has this got to do with MS? I hear you cry. By you, I really mean my esteemed editor. Well, the rise of the smartphone and my illness coincide — so much so that I effectively ran a business through it. My daily life was lightened by my phone. I could play video from myriad sources any time I liked, as well as catch up with news and even play games — though those days it was merely endless hands of Patience.

The light, if you were wondering, had to be on all night in case I needed an emergency pee. Not because of my overactive bladder; I’d been successfully taking solifenacin (known in the U.S. as Vesicare) to control that for a decade.

No, it was due to another of my collection of lovely MS comorbidities: lymphedema. This was a quasi camel-like absorption of liquid in my legs. It is in fact lymph fluid, which is usually pushed around the body by a sort of tertiary circulatory system. When this fails, the most successful way to drain it is to lie down with your legs above your heart.

As I’m no longer capable of such a gymnastic proposition, my profile bed does it for me. An amazing amount of urine can be collected, and if it happens during darkness, I will definitely need to relieve myself. This leads to a deft gathering of equipment — hence, the unrelenting light.

Oh, and my bed’s air mattress also failed to pump up. I can’t win.

I’ll be back next week unless stopped by even more technical difficulties — in which case, I’ll submit a test card.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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