An Impending Impediment To Independence

New Year, New Injury, New Questions

As we all enter a brand new year, my 17th on wheels, I wanted to pose a question to my fellow "person's of varying disabilities", something that's been on my mind more and more recently: 

How have you dealt, or how do you plan to deal, with an eventual loss of independence?

I ask this because a couple of months ago I woke up one morning and found myself unable to transfer out of bed and into my chair. Every time I went to push through my arms and lift, shooting pains went all down my left arm. I spent a good 20 minutes trying to push through the pain, do smaller lifts and shuffle my way into my chair, but the ability just wasn't there; my arm had completely gone. I'm generally a fairly rational person on the whole and someone who doesn't panic easily; however, in that moment, I will fully admit to feeling more than a little concerned.

I phoned my mum who lives nearby and asked her if she could come round and fetch my slide board from downstairs, a relic from my time in the James Cook Spinal Injuries Unit, stashed away in case of emergencies, and this certainly felt like one. As I waited for her, questions bounced around frantically in my head: 

"What the hell had happened?"

"What if this was permanent??"

"How many changes would need to be made to my life?!"

In hindsight, I can see that my initial fear and confusion had led to me playing out every worse case scenario in my head, but I think it also exposed a truth; that one of my biggest fears is losing the independence that I have. 

Good old banana board, practical AND stylish!

The Edge of Independence

Initially, after my injury, I really couldn't do much of anything for myself. My arms were incredibly weak, my fingers didn't work and I hadn't even begun to grasp how to adapt to my new circumstances. By the time I left hospital I could just about manage the basics of washing myself, feeding myself and dressing my top half; everything else was achieved entirely by, or at the very least with a large amount of assistance from, nurses, carers and parents. 

When I eventually got a fully accessible place of my own, it took me months of trial and error to work out methods of transferring, washing and dressing myself independently; and even longer when it came to the likes of bowels and baths. I moved from a flat to a house in 2017 and have since worked out a method of doing a floor to chair transfer that involves me lifting myself up a couple of stairs in the hallway and then across and back into my chair. Even 17 years after my injury, I'm still on the learning curve.

This fierce desire for independence, combined with a stubborn refusal to ask for help unless absolutely necessary, means that I'm able to live my life on my own terms for the most part and am not beholden to others. The increasing number of disability aids available also takes away much of the day to day stress and hassle of having to do things with limited arm and finger function. However, in terms of spinal injuries, mine is sat right on the cusp of independence and all it would take is one little negative shift for me to find myself on the opposite side of that line. 

So with mum having come to the rescue and me having edged my way across the slide board and into my chair, my next frantic phone call was to the spinal injuries liaison nurse who got me an outpatients appointment the very next day. I explained my symptoms to the consultant and was sent for a shoulder X-ray which came back clear. Next step was an ultrasound scan, but that wouldn't be until early in the new year, so I was told to go home, rest the shoulder and arm as much as possible (not the easiest thing to do as a wheelchair user!), and keep an eye on it. 

So "rest" and monitor it I did, and gradually over the next month the pain began to ease, so much so in fact that by the time the ultrasound appointment came about I wasn't sure they would even find anything. 

But they did.

Well That's Torn It!

It turns out I had torn one of the three tendons in my shoulder (the top one to be precise) and that my deltoid muscle was now compensating for it, which explained both the arrival of the extreme pain and the gradual dissipation of it. I was told to await a further appointment with the consultant, but that generally speaking they preferred not to operate on an injury like this, rather they would leave the tendon torn and allow the deltoid to continue compensating for it. When I asked if this was a common injury, the reply came, "not in someone so young". The long-term legacy of spinal injury strikes again!

What I'm assuming the inside of my shoulder looks like right now...

I have no real idea of what the positive or negative aspects of this stance are, and whether the underlying reasoning is medical or financial, but it has certainly left me with a whole new set of unanswered questions bouncing around my head:

"Are there any long-term implications of this?"

"If necessary, would it be possible to repair the tendon at a future date?"

"What if another tendon tears, does the deltoid just compensate further? This cannot be healthy for it surely?"

This all comes less than 7 years after a scan on a rotator cuff injury to the same shoulder found that I had worn away the entire protective layer (I think it was cartilage but don't quote me on that) around the joint. So whatever the answers to my questions may be, that won't change the fact that my shoulder, something I rely on in almost every aspect of life, is deteriorating far earlier than it should and that eventually it will likely get to the stage where I am no longer able to function independently with it. 

Fears Going Forward

I know this may all be coming across as a tad dramatic on my part; after all there are plenty of people with disabilities who already require assistance everyday, most able-bodied people will start to need a similar level of help once they reach a certain age, and I'm not currently at the stage where I definitively need help yet. I think that at my core, it boils down to the fact that, having fought so hard to regain my independence post-injury, losing it again would feel like a bitter regression and upheaval.

So there we have it, maybe not the most inspirational New Year New Me post to enter 2022 on, but something that's been playing on my mind a lot recently. If anybody has any thoughts or advice on this subject then by all means let me know either by commenting on the Active Hands post or by visiting my Blogspot page. Like I said, I know I'm not at this stage currently, but I think hearing other people's stories could help prepare me if/when the time comes. And if this results in a dozen comments telling me to "grow a pair" well, I guess I had that coming!

God help me if I ever regress back to whatever this stage was!

G