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Chronic Illness: (T)Rough Rolling

Wheelchair User: Do You See Me?

Wheelchair User: Do You See Me?

Living a good quality life with chronic illness is as much about maintaining an equable temperament towards the peaks and troughs of persistent relapses as it is about managing the practical realities of dealing with the physical considerations, I find.

It has taken me many years to learn to roll with the chafing resentment that I feel when I am forced, so often, to limit, restrict and change my lifestyle, maybe temporarily, sometimes more permanently, but there is also great joy when a relapse responds to treatment, subsides and I am able to resume and reclaim much loved lifestyle choices.

Ups and down. Rolling on. Peaks and Troughs on Heels and Wheels. Much like everyone else … including those not using the Wheels. Who’s not out there hoping for more peaks and less troughs in their own life right now?

That’s a long way of explaining my – eek – nearly two month absence from this blog as blogging is one of the things I am unable to do so well during my health relapses.

And, that’s sad, because I like blogging, mostly, and it helps my ‘equable’ temperament management to release my instant-trigger resentments and frustrations out into the ether in an impersonal way rather than stomp my emotional swings across those of, equally emotional, family and friends who all just want me to feel better … which I will, eventually, even if that may follow some painful adjustments.

I’ve found I manage change better in solitary thought over a little time, with D in support, than via knee-jerk desperation. I will ask, friends, family, specialists, if I need help but me and D find it easier to adapt without having to talk about it too much – certainly, for me, daily and weekly is too much even with those whose interest is driven by care and love.

In fact, I find that because these health crises are our normal but so ‘not-normal’ for everyone else, they always sound alarming and generate more concern at moments we are least able to be soothing and reassuring, generating more stress in trying to keep others calm. Best just not to go there unless or until things escalate out of control.

My-Normal is the crappy, life-limiting ‘normal’ that I’m used to. Don’t always like it but we all gotta deal with the crap in each of our lives. This is mine.

And, on that front, This was a regular health crisis. You know, the kind where an immune-deficient sick person catches a regular cold which takes six weeks to shake off and initiates a neurological relapse which causes deafness in one ear, double vision, vertigo, eye paralysis along with all the usual Neuro-relapsing stuff affecting all my limbs? Yes, not quite your-normal but it is mine.

So, this week, following my last week’s emergency consultant visit, I was doing my well-trod journey to and fro the daycare clinic in Queens Square for my usual intravenous treatments.

Thankfully, it all went very smoothly – love it when that happens – apart from one odd incident which was all about another patient whom I’d met before on a previous visit, attending the clinic alongside me.

Patient X is in the early stages of her neurological ‘mystery’ illness and, understandably, confused, scared, in denial and desperately wanting and hoping to get better.

When I first met her, we chatted but, almost two-decades into my own ‘mystery’ illness, she didn’t really want to acknowledge any bad news scenario outcome and, as living evidence of one-such, I understood, keeping my history brief and trying to do the listening, informing only in answer to direct questions about my experiences.

Her unhappiness had already taken her through a number of changes in consultant, none of whom were giving news she wanted to hear and she was seeking more options. And, that’s fine. It is crucial to find a consultant with whom you feel comfortable, trust and able to communicate with if you have a chronic illness. Sometimes you are lucky early on to find such a person; sometimes not.

I talked about my own consultant, his specialisms, my personal views about him – wonderful man who I feel lucky to have been with so long, unfailing receptive, polite and helpful even under extreme pressure. I feel I couldn’t be in better professional hands.

Over the few days, our conversations lapsed, both of us engaged in completing our purpose at the hospital. We said goodbyes and I figured I was unlikely to see her again as patients paths rarely cross.

Yet, this week, there she was.

We said hi but I didn’t see her much as I was more straight in and out on this occasion but she came across one time  and asked if D was around as she wanted to ask him something – she’d met him on the previous occasion.

I asked what she wanted as they’d barely spoken.

”I wanted to ask him about your consultant,” she said. ‘What he thinks of him and how to contact him …”

I just looked at her boggle-eyed, thinking, ‘How rude.’

Did she not see me at all? Why would she ask my husband about my consultant rather than taking me at my word? Even if she’d forgotten what I’d said, who asks a partner/Carer for information rather than the person in the primary relationship? Was it disabilism? Sexism? Whatever, it seemed rudely inappropriate and I was offended. D does not speak for me: I speak for myself. Nothing about me without me. I’m right on with that mantra.

I chose not to confront as that too seemed inappropriate, I merely replied with the information she had requested, saying that I was more informed than D as I take care of my own consultant communications.

Obviously, I then fumed quietly to myself about it, much to D’s hilarity. He always find it hilarious when people think I’m stupid because I’m in a wheelchair and/or female. I’m not generally slow to correct people on this but sometimes … well, I’ve got to think she wasn’t looking for aggravation?

Where usually, I might have responded with: See Me, or Hear Me Roar.

On this occasion, I went with Be Kind even if you aren’t thinking kind thoughts, bit my lip and wished Patient X well in her search and her health.

Learning restraint. Go me 👣

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