Dear Diary

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!

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