Oh shut up, Sarah!

Can you believe it? One of my carers said that to me yesterday – me who can’t speak!

Bloomin’ cheek! 😂

That’s what our relationship is like. We have a great banter, all through grunts, looks and hand signals – you can imagine what sort sometimes! (I am my mother’s daughter after all!)

In retaliation I splashed her with water as she let me soak my hands. 😆

In the same week I’ve been called bossy and demanding!

I love how we have such a laugh. I’m so lucky with how fab they are. They literally keep me sane. And they know me so well, I rarely have to use my phone to speak now. Sue has a great relationship with them too, in fact she finds it quite therapeutic.

Mind you, in contrast I had a new carer the other night who didn’t speak to or acknowledge me once whilst she (& the other one, who did speak to me) undressed and washed me. I was quite offended by that. Others have spoken about me, across me, whilst not actually including me. I may not be able to speak or do anything for myself but I’m still all there mentally, and I’m very much still me.

Luckily, those are the exception to the rule. Give me insults and hassle any time!

[I’ve managed to pull a muscle in my “good” arm so am trying to reduce movement in it, including using my phone, so bear with me if you message me – sorry!]

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…

What brave looks like

I’ve been overwhelmed and genuinely touched and humbled by the response and messages I’ve had about my blog. I’ve been described as inspirational and brave but it’s no false modesty to say I don’t feel either of those things. There have been days, and some very recent, when I’ve wondered if this was all too hard and if it would be better if I just went now. Days when I’ve struggled to find any joy in anything.

But I tell you what is brave. It’s getting up early every morning to let your wife’s carers in and looking after them while they’re here, then doing the same another three times a day. It’s dealing with all the workmen we’ve had here this week, making them countless cups of tea and coffee (25 one day!) while we live in the chaos of having our garden redone, a log burner installed, our utility changed into a wet room and a new toilet & sink put in upstairs- all at the same time. It’s doing absolutely everything that needs to be done around a house, and looking after the cats and dogs. It’s making and receiving numerous phone calls from healthcare professionals, utility companies, friends and family. It’s bearing the responsibility for and mastering how to use the pump that feeds me via a tube overnight, and the mechanisms that keep me safe in my wheelchair in the car.

It’s doing all this with love and good humour while looking after a disabled, terminally ill wife. Sue is the real hero in all this. She is the reason I get up every day and savour and cherish every moment we have together and consider myself lucky that I’ve had a few amazing, happy years with her rather than a life time of average. My reason for living and for fighting this cruelest of diseases with every ounce of remaining strength I have left. Sue has the biggest heart I know, she is the love of my life and my rock.

Privacy please!

Generally, once I’ve been hoisted upstairs and plonked onto the commode to do my business, the carers diplomatically leave the room to let me get on with things in privacy. Even then it’s quite hard sometimes to pee on demand (even though I now have to try to schedule my loo visits to the 4 times a day when the carers come!). One time, however, the carers just stood there over me, making a bit of chit chat between themselves.

Have you ever tried weeing on demand and whilst being stood over? In the end I had to signal for my phone and politely asked them if they could leave the room as I had stage fright…

Not only did it work, but they remembered too and never did it again!

A bit about me

My name is Sarah, often shortened to Sar (rhymes with air), I’m 51 years old and have Motor Neurone Disease (MND). I live with my wife, 2 cockapoos and 2 cats just outside Cardiff. I’m actually English but have lived in Wales for 11 years and consider myself Welsh in spirit, heart and soul.

I was diagnosed with MND last summer (August 2019). Mine has been a rapid progression and I can no longer walk, talk or eat, with weakening arms too. MND is untreatable and incurable and is always fatal, usually within just a couple of years. So it’s been a pretty awful few months. But I’ve received brilliant support from the NHS in the form of an occupational therapist, physiotherapist, speech and language therapist,nutritionist, respiratory nurse and a dedicated team at an MND clinic.

I also have a fab motorised wheelchair and was able to bank my voice before I lost it and now have an app I can type into which then speaks in my voice (albeit a synthesised version). Actually I only managed to do 70% of my voice banking before I lost my speech so my wife completed it for me, hence the slight Welsh twang every so often!

In January 2020 I was given access to a care package which means I now have 2 carers coming in 4 times a day to wash and dress me, get me up (all transfers are done via hoist), take me to the toilet, and get me back to bed at the end of the day. They are brilliant. Being washed, dressed and toiletted by strangers takes some getting used to but I’ve adjusted quite easily and we’ve had some good laughs along the way. 

That’s what inspired this blog really. I wanted to share the brighter side of living with this awful disease because it’s so important to try to stay as positive as possible. I don’t always succeed but these are my musings. They won’t all be cheerful but they will all be brief so please sign up for updates. I hope you enjoy!

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My First Blog Post

Up and at ’em!

This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates.

My new mode of transport is a hoist. The very thought of having to use one filled me with dread for so long. Not because I was scared, I was more reluctant to concede that I could no longer move my myself from point A to point B, even if those points were mere steps away from each other. But inevitably the time came. So I am hoisted from bed to commode and to the stairlift upstairs, then from there to my motorised wheelchair or the sofa in the lounge.

The sling they put me in is a toiletting sling, which in theory means my trousers and pants can be pulled down mid air before being lowered onto the commode. In reality this hasn’t proved very easy as the sling is quite bulky. The times I’ve been swinging from the air over the landing whilst my carers yank at my clothes!

Latterly, I’ve relented to incontinece pants. Given I can’t get myself to the loo it seemed the obvious option in the end (more on this another time). For those of you unfamiliar with these, they can be ripped off when no longer needed.

One time I was dangling from the hoist and my 2 carers were struggling to separate me from my undies, eventually managing to tear them off. The funny side did not escape me and as soon as I could I indicated for them to pass me my phone so I could type out and say to them… “it’s been a long time since I’ve had women rip my knickers off!”. Luckily they appreciated the humour.