A Mountain to Climb with MS – in My Living Room

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?

 

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.

John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.

4 comments

  1. Beautifully written! Having just endured two back-to-back falls due to illness-related weakness, I can completely relate. My night on the floor included a bunch of, in the end, pointless flailing around, and several incidents of peeing on myself. Anyway, I’ve reinforced the grab-bars and railings that serve to keep me from falling, and have a renewed appreciation for my local rescue team. I don’t doubt that I’ll fall again. I just hope the next time will be another controlled, slow-motion slide to the floor, and that I’ll have my cell phone within reach.

  2. Joan Higgins says:

    Aw jasus too funny too funny….said no one ever…! Thank you John for making my day! Good days ahead. Started LDN here this day last week and my bladder issues resolved in 3 days..Was diagnosed 1st june 2016..yes just last year…I know its early days but I am impressed in a WEEK …Take care Joan

  3. Carolyn Walther McVicker says:

    I loved his article..SO true..I too have been on the floor..In fact twice this past week..before that only once last year… where can I obtain the information for this inflatable cushion!!!

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