Dear Diary

Dear Diary
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I never kept a diary. I did sometimes muse about it but reckoned I’d never become famous enough for one to be useful. Well, at least in that I was right.

Until the rise of the smartphone, anniversaries and birthdays were flagged by my oldest son, who has the gift of remembering all of them, including our vast extended family. But if he hasn’t been told about it and I haven’t put it into my phone, things drift past.

It was my 26th wedding anniversary this past weekend — I know it’s the 26th because I asked him. In passing, I wondered how long I’d been doing this column. Since March 21, 2017 — now that was a bit of a shock! I’d missed my own one-year anniversary! I suppose I could now send myself one of those witty “Sorry I missed it” cards.

So, a year ago I could still walk a bit. I had functional electronic stimulation given to me by our remarkable National Health Service. Until my recent relapse, it really did help me get around. I was also hoping to get back to wheelchair tennis, but it never happened.

The upsides: My recent constant fight with urinary tract infections (UTIs) seems to be over. Besides religiously (always difficult for an atheist) cleaning my hands with antibacterial gel, nothing has changed in my self-catheterizing regime. I even tried gloves for a while, which seemed fair enough for a fight. It got so bad that I had the full urological check-over: urodynamics, abdomen ultrasound, echocardiogram, and flexible cystoscopy. I just got a clean bill of health from the urologist and haven’t had a symptom for well over a month. I now have stopped, at his suggestion, the prophylactic dose of antibiotics I’ve been on for some six months. The second round of Lemtrada seems to have lowered my white blood count so that this time ’round, I became really susceptible to UTIs. Hopefully no more — what a relief!

A brief flit over a year’s columns, unfortunately, charts decline.

In 2010, when I first turned up to an MS exercise class, I overheard one of the team leaders comment, “It’s like he doesn’t even have MS!” I was still in shock from my recent diagnosis in 2009, but had decided to fight while I still could. In truth, I didn’t feel that I belonged there. Six years later, I had to leave as I could no longer manage the journey. I joined a more local class, and this time, definitely knew I belonged. Then, overnight, I couldn’t even get to that anymore.

My family is slowing putting adjustments into place. An “A-Team” van with a rear tailgate lift is on order, as I am ever in the midst of bureaucratic complications. We’ve moved on from installing a lift in the house to my moving downstairs. We now need to make a wet room wheelchair-accessible, as well as the exit from the house and the front drive.

Dealing with being disabled is tough enough, but what I’ve really learned is that my MS has become another bleeding job!

***

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 the ‘80s, John created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009 John was diagnosed with RRMS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS, and also serves as MS News Today Forums co-moderator.
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In the ‘80s, John created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009 John was diagnosed with RRMS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS, and also serves as MS News Today Forums co-moderator.
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