Knowing Me, Knowing MS

Knowing Me, Knowing MS

john connor

The problem with writing a weekly column is I always need to come up with new ideas. Luckily, or rather, unluckily, MS always throws me a U.S. sports-shaped analogy — one of those trickily disguised curveballs.

I wasn’t even going to attempt to write this week. Not because of writer’s block but due to physical impossibility. It’s now Wednesday morning and it feels like an entirely different year since Tuesday when I could hardly move. Yes, I know there is software available to turn speech into typing. Who knows, one day I might access it. I am still wedded to the physical process of writing, and part of me still regrets the loss of the mechanical typewriters I learned my trade on.

It’s been a week of medical procedures. It wasn’t a surprise. I knew it was coming and took the day off work (the one day each week I have to be somewhere). But the severity still came as a shock!

Last Friday was an MRI. I was taken there and back in my wheelchair by hospital transport. And when I got there, I just had to lie down for 20 minutes in a “2001” interpretation of a high-tech coffin. I felt OK and decided when I got back home to stay downstairs with my family rather than be carried up to my bedroom. It was a joy (maybe not for my family) to be part of things for the day. Getting up the stairs at bedtime was like climbing the Matterhorn, though I’m not sure the wife would then have been so willing to lift my right leg up the last few steps.

I was pretty wiped out on Saturday and had to accept that this was all my own fault. I should never have tried to outfight MS. You have to live within its confines.

On Monday, I went to a different hospital for urodynamics. The urology nurse was an angel and as gentle as possible, but she still had to insert a catheter into my bladder and one up my rectum. It turns out I have what most MS patients she’s seen have: an overactive bladder. Instead of holding 500 mg before the urge to pee, mine is 250 mg. My urologist might now recommend Botox to ameliorate this. “My, your bladder doesn’t look a day over 50.”

MS just can’t take shocks.

This last medical procedure had been organized around my MS and extra time was given for the appointment. Everything that could be done was done. Yet by the next day, I was a wreck.

You can’t beat MS in a fight. Just lie down, take the count, and hope it drifts off in boredom.

***

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.

‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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4 comments

  1. Teresa Lawson says:

    Things I am grateful for …
    ~ The fact you were able to enjoy some downstairs time with your family.
    ~ The urology nurse who was kind and caring under the circumstances.
    ~ Someone else who can relate to a good old Corona, and I don’t mean beer : )
    ~ Your willingness to keep writing, even when you aren’t quite sure if you have
    one more ounce to give.
    Here’s to better days ahead.
    Thanks!

    • Dear John,

      MRI contrast is a heavy metal, not a dye that deposits permanently in all tissue, brain and bone.
      It gave me the following diseases: Idiopathic Mast Cell Activation Syndrome, Inflammation and fibrosis of the tongue – macroglossia.
      Inflammation of the salivary glands, over active bladder, trigeminal neuropathy. The precursor to Multiple Myleoma.
      Please see GadToxicity.Com. You felt wiped after your MRI because they just poisoned the crap out of you.

    • Karen says:

      What a lovely response Teresa, it made my day. We need to keep a positive mind in spite of the difficulties we sometimes face, and cherish those around us.

  2. Rob Teer says:

    I must disagree with the last of your article, about not being able to FIGHT MS, and to just lay down and take the count. I FIGHT MS EVERY SINGLE DAY, and when I wake up the NEXT MORNING, I know that I did in fact WIN the day before. For example, when I was diagnosed, I had a HEAT TOLERANCE, that basically made e go BLIND all over again and my balance was GONE! However, I’ve ALWAYS been a SUMMER person. So now, having MS at 39 years old, being a stay at home Dad to my 5 & 2 year old little boys, I wasn’t gonna CHANGE! I definitely didn’t want a couple of SCREEN KIDS! Especially NOT for MS! I went out, in 90 degree dead of summer, I fell, I bled, I threw up, many, MANY TIMES! But I WON! I BEAT IT! I can now get as HOT & SWEATY as I want, without any symptoms whatsoever! I’ve managed to keep a pretty good tan as well!! I don’t say this expecting that EVERYBODY can or will be able to do the same, but only to remind everyone that just LAYING DOWN is just another way of GIVING UP or LOSING! I personally don’t like losing. Winning has always came pretty easily for me, as long as I was willing to put forth the “EFFORT”! I get to stay at home with my little boys & play with bulldozers & dumptrucks all day every day, and I love it! Years previously, I wouldn’t have said this, but I can honestly say that MS has been a BLESSING for me, and I wouldn’t change getting it for ANYTHING or ANYBODY!

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