A Mountain to Climb with MS – in My Living Room

So, I’m lying on the floor taking in the stippled ceiling we’ve never changed in the past 19 years. My son,  also 19, is now at university. That’s how I can be so exact on the age of my relationship with the hideously slathered ceiling. We moved in one month before he was born. In the garden, there is still some IKEA furniture my wife fervently constructed in the last few weeks of pregnancy.

If that strapping lad were here now, there’d be no problem.

How did I get here?

I’m 57 and have had MS for nine years.

MS is bad enough, but one of its lovely sidelines is that if you get an ordinary illness it catapults you into decrepitude (I self-catheterize so UTIs are more common than colds). I turn into a younger Stephen Hawking — only without the compensating intellect or sharp humor.

It was a slow collapse. I’d just spent three days sitting on the couch and the antibiotics had begun to kick in, so I was having a go at transferring to my wheelchair. Obviously, I didn’t make it. I got partway onto the chair, but slipped slowly down like a graceful drunk.

My battle this night was how to get back to my commanding position on the couch. From there I had full access to the world — the TV with its myriad cable channels, the self-indulgence of Netflix and my laptop. Oh, what a time to become disabled! The information age sure has taken the edge off.

I’d lost my balance for the vanity of wanting to actually sit on a toilet.

It’s already desperately uncomfortable and really frustrating lying on the floor, let alone trying to use a catheter in this position. It’s possible, but not pleasant, and too much like advanced yoga for my taste. I was going to get back on that couch.

Ten years ago I happily rappelled with my son on a scouting weekend. I remember the two of us nonchalantly tying up and saying a hearty good morning to a traumatized dad before launching off as if we were on a Sunday stroll, which we were, in a way. A few years later, I was looking at a one-foot ascent like I was preparing to climb Everest. Admittedly, there was no death zone, but I already felt shattered at the approaching attempt.

In my current state, my arms work but there is no power. The legs, which are unstable even on good days, are as useful as the fins of a fish out of water. That’s not strictly true, as there’s at least one fish that can walk. I am not that fish.

Disability is self evidently tough, but as with everything else in life, experience counts. This adventure I’ve been shoved into isn’t one that I’d ever envisaged. I have no clear route. Things happen. You adjust to them, but it’s very difficult when you hit a brick wall. Or, in this case, a couch that resembles a cliff that I have to climb.

Physically I may be floundering (there’s that fish metaphor again, but let’s not carp about it!), but MS hasn’t as yet dulled the old intellect — or at least I don’t think it has. Ancient Egyptians learned to get great sodding lumps of stone up onto the pyramids, and I seemed to remember it was by going up small inclines an increment at a time. I didn’t even look it up. Anyway, it worked.

For the next hour I clambered onto cushion after cushion taken from the couch until I managed to climb to the required height and roll on.

Exhausted and triumphant, despite not having a flag.

Victory — lesson learned, etc. Except the lesson was to outthink the disease rather than react to it.

When I next ended stuck on the floor, I thought the old cushion climb routine would work again. Well, it didn’t. I had to lay there for the night and get pee all over myself.

So I’ve done something about it. There’s a blow-up pillow, or cushion, especially for raising the prone. I got in touch with my local occupational therapist and now I’ve got one.

I’m ready for battle, especially as when the therapist was here, he suggested raising the couch. It’s now five inches higher. But, hey, I’ve got the technology.

What’s next?

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