A ‘meh’ week at the MS office…

On Kadeena and cotton wool
7 January 2017
Car Crash Multiple Sclerosis
20 January 2017

A mixed milestone in my surreal disabled world this week. Mixed because I should have caved in and done it months ago. I finally took delivery of a ‘walker’. Once upon a time, it would have been a Zimmer frame but nowadays, they’re plastic, they have wheels and they have brakes. Rock ‘n roll, eh…

It’s another icky marker in the ‘progress’ – what an ironic way to describe what is happening – of my illness. Every one of these moments knocks me back a bit, and some blows are bigger than others. In no particular order: a new symptom. First time in a wheelchair; first walking stick; crutch; two crutches; first use of a mobility scooter; first catheter; first fall in public; first fall when alone; losing my permanent driving license; moving down to a four-day working week; self-injecting daily; booking assistance at an airport; first ambulance called out; first hospitalisation. Quite a lot of body blows and smacks round the chops when you add them up.

My walker, and another one I fought off for far too long, ‘submitting’ to a walking stick, were very much blessings when I finally accepted the inevitable. Partly because I was suddenly less of a danger to myself and others, bouncing as I was down corridors and grabbing random bits of furniture, and occasionally people, like I’d had two bottles of wine and a vodka chaser. Mostly though, because your average human being recognises the clear signal I am disabled and is so much more understanding and considerate. Sometimes it can get too much – I still want to do everything I possibly can for myself – and I certainly don’t want sympathy. But from day one I appreciated the mini ‘parting of the waves’ as I hobbled down the street, the opening of doors, carrying stuff on my behalf etc. Hey, I never have to clear the dinner table any more, hurrah! Silver linings and all that.
Sometimes these ‘milestones’ are MS developments or MS-related incidents. Sometimes they are seismic decisions we reluctantly take because of MS. Whatever they are, these days are the tougher ones to deal with, and the biggies can take a long, long time to get over.

Sometimes I sneak a little cry, often I go into a slightly morose shell for a while, but at some point, I get used to my new level of disability. I get the hang of whatever new gadget or medicine or lifestyle change is forced on me, and settle into a ‘new normal’. And that can go on for weeks or months. Sometimes I opt for some counselling to help wade my way through. You can hardly forget about the disease, but you learn to cope with its new ‘level’ and carry on with life. Adapt and overcome, adapt and overcome.

Then, wham! Multiple Sclerosis decides you are far too comfortable with this level of chronic illness. “Here, have a new challenge to deal with. See how you like that!” it cackles. “I might leave you with this new conundrum for a day or two. Probably longer. Maybe forever. Ha!”

2 Comments

  1. D Smith says:

    Very good post about the resistance 'accepting the inevitable'. In hindsight (a wonderful thing), I realise that I've always taken the steps you describe about 2 years too late and if only I could have 'accepted' these steps/aids earlier, I'd have saved myself so much stress and heartache – but I'm determined (stubborn) and I suppose you just have to try to "live & learn".

  2. Agree. Every single one in the mobility 'journey', Stick>Crutch>2 Crutches>Walker and alongside that scooter and wheelchair adoption have been weeks or months too late. All linked to denial, being stubborn etc. Not to mention that underlying shame you can never quite get rid of. Hey ho…

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