It’s the Little Things

It’s the Little Things

john connor

Really big things are going on in the world. WW3 is again flagged as a possibility.

My world is considerably smaller. It’s mostly my bedroom.

I can get out of it, but it takes a considerable effort. In the last seven days, I only exited it once. Last night, I managed to get down the stairs, plonk into my new heavy-duty wheelchair and get into a wheelchair accessible vehicle (WAV). In London, this is any black taxi — Uber is useless for the disabled.

Just this effort alone was enough, but then I found myself careering ’round the back of the cab like an out-of-control Dalek that Doctor Who messed with! Somehow, the axle buckled and the wheel went offline, and so the brake no longer engaged. Probably because of my weight and the effort to get out of the house via a succession of ramps, like a Disneyland ride.

The cabbie stopped, and I pulled out the side armrest (luckily, I’d just spent the preceding hour learning how to do this) and managed to heave myself onto the backseat. The cabbie helped me roll the wheelchair on its side, and I physically manhandled the wheel back into line.

Wheelchair fixed, for the moment, in the back of a London taxi. (Photo by John Connor)

Got to the venue, did my job, and got home again — I was absolutely shattered. It was hours before I got the strength to climb the stairs to bed. As I write this column the next day, I’m still exhausted.

We’re seriously considering putting a lift in the house, and when we get a moment, we’ll do more than the precursory research we’ve managed so far and sort it out. I’m well aware of how disabled I am and how much more so I’ve become over recent weeks (I’ve just had a relapse despite going through two rounds of Lemtrada!), but both my wife and I are up to our ears in work and other family responsibilities.

It’s like that old line: You wait for a bus, then three come along at once. If you’re reading this in LA, insert, “Waiting for your limo, then the whole fleet turns up!”

Meanwhile, small things have driven me mad. Though, however angry I’ve gotten, I’ve channeled it into being as reasonable as possible. That is hard work.

I am the Captain now. (Photo by John Connor)

Now, I’ve been too busy to keep on top of the smaller things and, of course, these then turn into crises. Since my relapse, my urethra has been drier than normal. Which no one would notice except those of us with MS who have to self-catheterize. As I wrote a while back, I suffer from pitting edema. (That post now has some 50 responses and readers are writing to each other, so I’m definitely not alone in this.) To counter this, I use a drug called Lasix (furosemide) to increase urination and therefore reduce the amount of swelling in my legs. But now I can’t always use a catheter without Cathejell, which I’m fast running out of. So, I put an emergency prescription in. This becomes a farrago and it’s only with patience from a patient and a carefully worded email that supplies actually turn up. This also was yesterday.

My life, though, has been incredibly enhanced by my local occupational therapist, who has supplied me with a shower chair. It’s on wheels, and I can now also scoot around my own bedroom and get to things like the sink easily. It also looks like a “Star Trek” captain seat — only this one has a built-in commode! Now, that’s what I call a captain’s log …

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2 comments

  1. estelle perkins [email protected] says:

    I can see myself failing every day. Walking, Shaking, etc. I have a large home and acreage and a dog who I love. Fortunate to have a young son who lives nearby. Yesterday he raked my gardens and cut trees that had fallen during the winter. He also runs my dog. I can only tie him outside my back door for a short time. I have always taken care of everything and now I feel lost to MS.

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