I Survived My ‘Home Alone’ Weekend

I Survived My ‘Home Alone’ Weekend

OK, this was my first test.

Accomplish this and Day One should be a breeze.

The trick is not to panic.

You’ve crossed a continent with your thumb — now all you have to do is get out of bed on your own.

You manage it most days — OK, not yesterday. Slight panic.

Remember the mantra from “Dune” (Frank Herbert’s 1960s sci-fi classic): “Fear is the mind-killer.” As an atheist, I don’t have any religious texts to cling to, so I might as well employ the reading list that influenced me as a kid.

I suppose when you’re a wire walker there must be a first time when you set off without a safety net. You can’t have one stretched across Niagara Falls!

I have, though, created a sort of safety net at home: a bath mat. When you put stockinged feet onto a laminate floor, there is no purchase. As with everything else with MS, solving one problem leads completely to another. MS is like whack-a-mole. Because of lymphedema (which, yes, seems to be caused by MS), I have to wear compression bandages or stockings 24/7. So, I solved the slippage problem with a bath mat. It’s been so successful that I wore out my first one and am now on my second.

My safety bath mat. (Courtesy of John Connor)

My family went to Paris for the weekend. I could have gone with them, but then it becomes all about me. Suitable accessible accommodations would have to be found, which takes an inordinate amount of time to organize. I also need so much time to recover that I’d end up doing just that. Sure it would be in Paris, but all that I would have achieved is swapping rooms for the weekend. Hardly worth the effort for me and a severe anchor on my family having fun.

Sure, I could have gone to a respite center, but I had oodles to do.

Besides all the bureaucracy that being disabled chucks at you, I had loads of business things to catch up on.

I got loads done. I watched endless self-indulgent streaming television. I listened to podcasts. I still didn’t touch the mountain of books that I mean to read. I’m now 61 — I’ve got a distinct feeling I probably won’t get to them. It’s the internet’s fault. Before YouTube, I devoured modern history books. Now someone else does it for me and I watch or listen to lectures and summations of books. The internet has even made being academically curious a lazy pursuit!

So, yes, I managed to get out of bed both days. Fed myself with supplies from my mini-fridge. Had lashings of coffee from two enormous thermos flasks. And put both my concerned brothers-in-law off visiting.

They had house keys in case of emergency. But it was a hot weekend and I cooled off by becoming a naturist.

Dressing would have been just too much darned effort!

***

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‘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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‘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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3 comments

  1. Caroline Borduin says:

    Oh my gosh, I am glad you commented on watching instead of reading. It’s the same with me. Once a voracious reader, I now listen or watch everything. My current habit when I am resting in my chair (after the rigors of cleaning the kitty litter pans or taking a shower) is to to watch Time Team on YouTube.

  2. jan shopland says:

    Thanks for your amusing/uplifting blog.

    I’ve had MS forever – or so it seems.
    I live in deepest darkest Norfolk ( England) – we took a wrong turning in 1987 and then I got seriously fatigued – like comatose and more.
    So still here – not a bad county to rock up in when non-earning !

    Also got a place on coast in Sussex – swapped one Georgian home for 2 cheap properties in 2001. Saves time/energy on domestic violence.

    I’m older than you – still ambulant – just -though have had a bad year.

    Just keep breathing and sing ” One day at a time Sweet Jesus ” – with irony – as my Texan pals do.

    With apologies to all Christians – everywhere.

    I wish you all well.

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