Relapse, Relapse, Relapse

Relapse, Relapse, Relapse

john connor

Relapses can be sneaky.

They can scythe you down.

I’ve been dealing with multiple sclerosis (MS) since 2006 and I only consciously remember two relapses.

The first relapse was two years after I had been diagnosed with sclerosis. There was the possible hope from my first neurologist that nothing else would happen, which was hardly forlorn since that had happened to me best mate, Nigel. Sure, his sclerosis nearly killed him 19 years ago, but he has an annual “Nigel’s Not Dead Yet Party.” However, things have slipped a bit recently and so he hasn’t held one this year. I’m somewhat vague on the details, but the 20th party might be at the end of this year and will be a definite shindig.

Nigel has recovered somewhat from his relapse, but he can’t swallow, everything has to go through a stomach feeding tube, he has a fiendish swirling sensation dealt with by heavy-duty drugs (ketamine was his last missive), and his voice sounds like someone trying to communicate while buried by an avalanche.

The rest of my relapses were imperceptible, only spotted by my neurologist who observed my obvious decline between one six-month checkup and the next.

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In February of last year, I was poleaxed. I felt how the Polish population in the U.K. must have the day after the Brexit vote. I wouldn’t have to leave the country but I could no longer walk about it!

I was stuck in my bedroom for months. The only times I escaped were when hospital transport carried me in and out for appointments.

The usual massive infusion of steroids was administered and luckily I gained some immediate recovery. My relapsing-remitting status was still viable. I could now stand up, drag myself out of bed on my own (well, most of the time), and finally have a shower! I still rely on help to get out of the shower but I’ve managed twice on my own in the last year.

A new infrastructure was called for. It took a lot of research and the usual excessive paperwork!

So, it’s a year later. What’s been put in place?

Nothing yet. Change seems to be as imperceptible as most of my relapses!

I’m getting an electric wheelchair next month. A van with a built-in tail lift has finally been built by Volkswagen in Germany, and has just been imported into the U.K. before the dreaded Brexit strikes! Porsche buyers here have just been warned that a Brexit surcharge is coming. But hey, if you can afford a Porsche …

A Liverpool company is modifying the van and tenders to adapt my house have finally gone out. The idea is that I move downstairs, have an easily accessible bathroom, and can get in and out of the house on my own. There will be a flat run through the front door with a modified drive designed for the disabled.

The builders will also have to reconfigure my Porch but as it’s a British Porch, there’ll be no surcharge!

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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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

5 comments

  1. Rodger Ashton-Smith says:

    I hope the car will help you. I have given up getting my car modified as my reactions have got worse and I don’t want to hurt me or someone else. Best of luck it will be good for you

  2. I’m one of the lucky one’s, I had my first introduction to MS in 1984, I’m still mobile on my feet with a cane; I retired in 2013, after a hospital stay and loss of all sense of balance and major fatigue. Hope the best for all afflicted with this crap; hope you can have a great and painfree week!

  3. Jeanine Thiede says:

    Thank you for your story. I think we all wonder when we will end up in a wheel chair and dealing with a disability mobile. I fight to take a shower on my own but it takes everything out of me. I have balance issues and very bad back pain. I am wondering if this back pain is what I have heard of, MS hug. It took me a long time, about 11 years to get a diagnose after I started declining. I now have been diagnosed with progressive MS at age 58. So very glad I am no longer working. I would never make it out the door before collapsing. MS pain free hug to all with MS.

    • broce says:

      Jeanine,
      My MS began in my back. Every muscle in my back is in constant spasm. I also have degenerative disc disease, but the really painful stuff is the MS. There’s an area too where it feels like the muscles are stuck to my spine and won’t move. It took me 26 years to get a diagnosis as both this and other symptoms were dismissed by doctors. It was not until I had a bout of optic neurosis in 2008 that anyone took me seriously and did an MRI.

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