Be Warned: Another Column All About My MS and Me!

John Connor avatar

by John Connor |

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Many years ago I thrust myself into the Edinburgh International Festival. For the many who have never heard of it: It’s the largest arts festival in the world, encompassing theater, mime, dance, comedy, film, books, and sometimes even a splash of opera. For some reason I even sat through a three-hour Japanese operatic interpretation of “Macbeth.” It was quite spectacular, replete with a blossom-dropping orchard for the final scene where Macbeth’s severed head is delivered to the new king. I got that bit!

I was in Edinburgh to cover comedy and theater for the hip, new London magazine I worked for. I’d gotten a bit excited with my first ever journalist accreditation. I was 24 and got into everything for free, unless it was a sellout. (That was never going to happen to a three-hour Japanese operatic interpretation of Macbeth!)

What’s this got to do with MS? I’m getting there. This is just a bit of scene setting.

Comedy was my first love and in the early ’80s we were in the beginnings of a scene that would change entertainment in the United Kingdom. Racist and sexist comedy was about to be ritually slaughtered! That move was very late compared to the United States. The idea to follow their lead had started in the head of a maverick agent/life insurance salesman, after a visit to Los Angeles. So, for American readers, ta.

Every comic at the 1983 festival would gather at practically the only late-night bar in town. It also was a late-night stand-up show hence the rare extended liquor license back then. It was a small, thin, rectangular space filled with comedy performers and the smattering of agents and journalists who could sniff this wind of change. It was like being stuffed in a rush-hour London tube train — only, with beer and incessant smoking!

I quickly worked out that the majority of performers were only interested in talking about themselves. It was narcissists a-go-go. I gravitated to the ones who didn’t … at least, didn’t so much!

Writing a column about MS is a sort of license to bang on about my various ills. So please forgive me; you’ve got enough of your own to deal with!

Still, it maybe means I don’t go on about my MS to my dear wife, Jane. At least not in an unrelentingly dreary monotone. I have you! I’ll try to keep it brief.

Hopefully I’ve rambled interestingly enough to hold your attention …

I was hoping this week’s report from the frontline of my bedroom-office was actually going to be light and airy. Instead, trigeminal neuralgia (TN) planned a sleeping surprise on Monday morning, so early that it was still dark outside. 3 a.m. I woke in screaming agony. I’d have sat bolt upright if I still could.

I realized I had to control it somehow so I wouldn’t wake everybody. (See, I do think of my family.) Opening my mouth — finally, something I’m good at — seemed to help. I could dismiss the pain enough to slip in the epilepsy drug oxcarbazepine and muscle relaxant baclofen, which help with TN. The trouble was I had to swallow them every two hours to get through the night!

The same thing happened the next night! I decided to head it off at the nerve by taking extra drugs. This worked. Now the slightest twinge woke me but at least I could dose myself with helpful glugs of water.

The only trouble, dear reader, is that your dear writer now sees double! I have to slip a patch over my glasses. The patch came, for some reason, from Japan. Maybe this affliction has hit their aging population.

If only I could open my one good eye! (Photo by John Connor)

It’s also, dear reader, had me lifting copy styles from North Korea!

Don’t take drugs!


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.


ĺLeanne Broughton avatar

ĺLeanne Broughton

I am sorry about your TN flare up. I also had a flare up this week, started on Thursday and am still suffering from it on Sunday. Nerve pain is the worst. It is the most difficult affliction in my MS journey. Hope you are pain free soon. I just think this too shall pass.

Jenny Orlov avatar

Jenny Orlov

Sorry to hear about the TN and now the diplopia.
During my last ‘eye issue’ I wore a pirate’s eye patch that I bought at a toy shop. ☺️

Cay Borduin avatar

Cay Borduin

I had a flare a few weeks ago. I drank my meals for two weeks which seems to calm the darn thing for me. Now on my regular regimen of two Oxcarbs a day and no pain. My flare ups are always brought on by emotional stress. I was weaning off of Abilify for depression which worked great, but also made me unable to sleep at night. That made me a mess!

Sad to hear you're suffering too. The eye patch makes you look dangerous, so there's that.

John Connor avatar

John Connor

I know where u live!

Grrr. x

Penny-Marie Wright avatar

Penny-Marie Wright

I got double vision also from MS. I drove with 1 eye closed for quite a while as my eye doctors tried to fix my glasses. What you need is prisms in your lenses. Takes care of it unless you prefer the pirate look.

John Connor avatar

John Connor

Ta. But it only happens when I have to take excessive drugs to deal with a flare!
Or I could just get a parrot. x


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