Today was the tomorrow you feared yesterday

I’ve mentioned before that accepting I needed to use a hoist was a challenge for me. Probably the hardest so far. In many ways I don’t know why. I had readily accepted all help I needed up to that point: a walking stick and hand rails up the stairs, then a rollator and a stairlift, a motor scooter and a manual wheelchair, a Zimmer frame and a motorised wheelchair.

This is where I got stuck though. At least with the Zimmer I could walk myself from bed to bathroom or stairlift and from stairlift to wheelchair or my riser-recliner chair. As that got harder, my fear of giving in to the hoist grew. I had a real hang up about it (scuse the pun). Eventually I had to concede, however, that I was no longer safe on my feet.

And falls need to be avoided at all costs. I had a couple a few months ago. Once when I was alone at home – I fell on the front lawn and had to drag myself inside to the kitchen to ring for help. It took me about 40 minutes as I just didn’t have the strength to get on my feet. The second time I fell backwards in the utility room, cracking my head on the floor. Luckily no harm done but Sue couldn’t get me up – we ended up rolling me onto a blanket then Sue dragged me to the sofa and built up some cushions which I clambered up and onto the sofa. It exhausted us both!

So I had to give in and adjust to losing my last morsel of independence. MND has no respect for pride or dignity.

Luckily for us my care package had kicked in and I now had 2 carers coming in 4 times a day. Once they started using the hoist I soon got used to it of course. It was a bit of a matter of trial and error to find the best way of doing things (once leaving the stairlift belt on me and trying to raise me up on the hoist so the belt was cutting into my legs!), not least because I have different carers all the time and they all bring different experiences and preferred ways of doing things – plus, I’m a complex case and many hadn’t cared for someone with MND before. But they were amazing. There’s a core group of about 6 that I see regularly and soon they sussed the best way and we now have a routine that works. And I keep a beady eye on any newbie that turns up!

When I’m “in transit” I can’t use my phone to speak to them of course but hand signals do and we manage to have such a laugh at times.

Even with the carers coming in 4 times a day, timing loo breaks to coincide with their visits was tricky – not least as they don’t come at specific times but within a window of an hour or 2. I started obsessing about it and refused to drink enough fluids, which of course dehydrated me. Developing occasional diarrhoea, thanks to my feed, didn’t help matters. In fact I became rather depressed.

And so I agreed to trying continence pads and pants. It actually took one of the carers pointing out to me that it’s not as though I can help it if I have an accident- if I could get myself to the toilet of course I would, but I can’t. It’s not my fault, so this really is the logical – & only – solution.

As someone on the MND Association forum once said to me: today was the tomorrow you feared yesterday. I faced the day, it wasn’t so bad and now it’s routine.

And I’ve grown used to wearing my pads too – even though, as I remarked to my carers once, they’re so bulky that “I look like a well endowed bloke”!

My next challenge will be adjusting to losing use of my arms and hands. My left arm is already very heavy and nearly impossible to lift, and my fingers are losing movement – being left handed it’s my texting hand (disaster!) so you will probably find my replies to messages are slower and briefer now as it’s quite hard to type – apologies in advance but it’s quite tiring, especially as I have to type in order to “speak” too. My right arm is now starting to go as well. It’s very likely that before too long I won’t be able to use either hand and will be relying on “eye-gaze” technology. I’m dreading it. But I’ll cross that bridge when I come to it. Watch this space…

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