‘Well, This Could Be the Last Time, I Don’t Know!’

John Connor avatar

by John Connor |

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Don’t be so overdramatic, my wife always tells me.

But as I’ve spent 30 years of my life as a pseudo-luvvie, I’ve earned the right to have a good and proper flounce if I want one.

It was a weekend of severe illness. A urinary tract infection (UTI) poleaxed me without warning. I’m now so attuned to them that I only need the slightest sign to react. The merest urge to pee when I’ve just finished is the biggest giveaway these days.

In the past, my urine would smell literally fishy. Those days have passed with my now twice-a-day use of Hiprex (methenamine hippurate), which turns my urine into a disinfectant! I use it three or four times a day when I have a UTI. And I will always get a UTI because I’ve got a biofilm built up in my bladder.

Or, as my new urologist puts it: “This is a typical story of chronic urinary infection punctuated by acute exacerbations.” I can’t quote the full document, as it’s five pages long!

So, it’s not unusual for my urologist to have a printed sheet that perfectly fits my predicament. What is unusual is that she is one of the few urologists in the county to treat UTIs this way. I am outside National Health Service guidelines, taking two 100-mg prolonged-release capsules a day while the usual prophylactic dose is one. As soon as I get a UTI, I go up to three, which is the usual dose to deal with an infection.

Sorry if I bored you with all of this technical blather about my bladder.

This time, despite knowing all of this, a fever encompassed me so badly that it turned me into the epitome of a gibbering wreck. It was a real fight to come back from. But I made it, then all hell really broke out.

Suddenly, I was thrust onto Omaha Beach in the midst of the D-Day invasion. Bullets ripping through my body admittedly would have been no fun, but at least it would have offered blessed relief!

An attack of trigeminal neuralgia ripped through my mouth with a pain so bad the German secret police could have only dreamed they’d had the power to inflict it in World War II.

It was 10 a.m. on Tuesday. (I’m writing this at 2 p.m. on Wednesday.)

No matter, I had the medications to deal with it — oxcarbazepine —and I managed to get them down, which is tough during an attack.


The pain in my mouth went to 11!

It was now unending. Desperate, I managed to type trigeminal neuralgia (or something close) into my phone. Up popped the Wikipedia page, something we aren’t allowed to use as a source in this august (he was so much better than that Julius fella) tome, but I was desperate.

The beginning was all correct, then up popped baclofen and gabapentin as possible second-order protections. I’ve had both of these for my neuropathic arm.

Gabapentin was far too big of a pill to even consider for my febrile mouth, plus a doctor had told me that it worked more slowly anyway. So baclofen it was!

Thankfully, it worked. Two hours of the severest pain drifted off.

I’ve entered, not for the first time, the world of self-medication. As usual, it will take some time to travail the medical world for their sanction.

I honestly thought I’d never write another column. If my solution doesn’t hold, I still might not!



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.


John Cowburn avatar

John Cowburn

I feel for you John! You have a shockingly bad time with MS. I also have SPMS but have nothing like your symptoms. Whenever I feel like moaning, I now think John Connor has it many times worse. I'm now 74 and was diagnosed 15 years ago, my neuro said at the time it was RR but I'm pretty certain it wasn't, and was some form of progressive right from the start. I never had any relapses or remissions, it was just a steady downhill slide. Now in a wheelchair 95% of the time, I can sort of shuffle about 8 yards with a frame and that's it. So keep on writing, it's the best diary on MS I've seen! John

John Connor avatar

John Connor

Ta mate x

John McCann avatar

John McCann

Hi John,
You gotta keep writing that 'technical blather' for as long as you can. Definitely the best and most honest MS commentary I have seen. Inspirational

John Connor avatar

John Connor

Cheers, but I was going for funny! Another punchline missed!! x

Eleanor Whitney avatar

Eleanor Whitney

Hang in there John I love reading your column but can also sympathize with your aches and pains being a PPMSer myself.

Kim avatar


God bless you, John please keep on fighting & writing as long as you can! I do so enjoy your columns, I’ ve got 17 years of relapsing-remitting MS on my belt notches now, still puttering along. Have decided getting older doesn’t help . Thank you again

Mary Dacey avatar

Mary Dacey

Hellooo. You can’t leave now. I just found you! I haven’t been to the beaches of Normandy, but my left leg has certainly been somewhere. MS plus a crush injury has caused my foot and lower leg longing for respite, perhaps at the beaches of Waikiki. Baclofen and Gabapentin are two of my friends as well. Hang in there! Jesus loves you.


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