The new, weird normal

We’re all adapting to a new way of living in these unprecedented times.

In some ways it’s not that different for me personally as I haven’t been going out much anyway lately, due mainly to the dreadful weather. We still watch This Morning (at the expense of Homes Under The Hammer unfortunately) then when it’s time for Escape To The Country, Sue decides we’ve watched too much TV. 😖😂 My days are still punctuated by 4 carer visits but actually that’s where I’ve noticed the biggest change.

For various reasons nearly all of my core group of favourites are off, some long-term, and oh how I miss them. 😔

Of course I miss them for practical reasons – each day I wonder who’s going to turn up and if they’ll be any good. It seems each day, each shift, brings new ones. For the most part they have been pretty good – in fact there are a couple of real gems and on the whole they are such kind, caring people – but it’s been a bit hit and miss and I can’t help but get somewhat anxious each time. My head has flopped back a few times, which is pretty painful – my regulars always ensure that never happens. And as these ones don’t know me so well they treat me differently too. Some – well, one – gets impatient when I want them to do something differently to what they’ve assumed I need and doesn’t want to wait while I type my wishes, others talk to me as though I’m either a 5 year old – or a deaf 95 year old!

But I also miss the regulars personally too as I consider them my friends and worry about how they are. So if any are reading this – Sue and I send you lots of love and best wishes for a speedy recovery.

I am of course extremely grateful that I’m still getting the help I need at a time when the NHS is so stretched.

Sue’s family are being fantastic, as ever, picking things up and dropping things off for us and generally checking we’re ok. Friends have offered help too. A group of us, who had got into the habit of having dinners together at ours every couple of months, had an online get-together last night on Zoom. In case you don’t know it (I didn’t before), it’s an app you put on your phone or iPad and you can all see and hear each other – it was fab, really lovely. My carers came half way through so I had to leave the call but I joined it later from my bed! Aren’t we lucky this has happened in our high tech generation?

I’ve always been a bit of a worrier but thought I’d been doing pretty well at keeping a lid on things regarding coronavirus – consciously at least. Lately though I’ve started waking at around 3am feeling extremely anxious, bordering on having panic attacks, for no identifiable, specific reason but it has to be related to that and my vulnerability to it. I’m being robbed of enough of my life as it is – I’m not ready to go yet.

So like everyone else I’m going to have to find things to do to keep me preoccupied. One is photography, albeit just around the garden, though as my arms and hands are starting to fail me now I’ll need to limit the time I spend trying to hold my camera and I can’t really lift it up now which is very frustrating.

So I also need something a little easier physically. Someone I know mentioned they were getting into genealogy and I’m half wondering about ancestry. If you have any other suggestions please let me know.

Anything to keep me away from daytime TV. That way, madness – and divorce – lie! 😂

Hurray for average

I’ve always considered myself entirely average; I’ve never excelled at anything and, unlike seemingly everyone else, I have no hidden talents. Self confidence was always a huge issue for me and held me back in so many ways.

Work wise, I constantly compared myself unfavourably to my colleagues. There was a brief period many years ago at Cardiff Uni when I had two lovely, wonderful managers – one of whom in particular became (and has remained) one of my dearest friends – who made me feel truly valued. But since then my self confidence at work nose-dived. I ended up being my own worst enemy, made things worse for myself and I was very miserable. Even when I changed jobs, finally leaving international student recruitment and the frequent jet-setting around the world (not nearly as glamorous as it sounds, though it did of course have its moments), I struggled to find my niche. It has to be said that wasn’t helped by dreadful, undermining management but I always assumed people thought I was ok but really weren’t that fussed and not particularly impressed.

Personal life wise, I wasn’t much better. I blamed myself for losing touch with friends and then thought they wouldn’t want to hear from me because they resented me for it.

I treated friends – and colleagues – as if they didn’t like me so ended up pushing them away further.

Becoming ill changed all that. I had visits from friends – and family – I hadn’t seen for years, who travelled across the country to see me just for an hour or two. I’ve received such lovely messages from long-lost friends too. It was truly humbling and very, very touching. I’ve had visits and lovely messages from colleagues as well. Not to mention the fundraising events that were organised for MND in my name (sadly cancelled due to coronavirus) – that really blew me away. I consider myself very blessed.

I wish I’d known what people thought of me. What a difference it would have made. But that was no one’s fault but my own.

So if I can pass on one message to you, it’s this: believe in yourself and treat people as if they love and value you, because the good ones will reflect that in their treatment of you, and the horrible ones will show their true colours and can take a running jump! We’re all just stumbling along in this world – be kind to others but be kind to yourself too.

Besides, the world needs us average people – otherwise how would the superstars look like superstars?!

Getting into a lather

Big day today. I had a shower. My first for months! Obviously I’ve been washed every day but bed baths really aren’t the same. I’m what’s called a Double Hander – which means I require two carers. I joke that each of my boobs is a double hander as it takes one carer to lift and the other to wash under! 🤣

To be honest, I’d been a bit apprehensive at the prospect of having a shower and wasn’t in a great hurry. So I wasn’t bothered that the wet room took a while or that then we had to wait for the Occupational Therapist to come out and do an assessment before the carers could take me in it.

I certainly wasn’t as keen as one carer in particular who, in her words, couldn’t wait to get me into the shower and wash all my “nooks and crannies”!! 😃

Part of my reluctance was due to worrying about the water going on my face and not being able to breathe. As luck would have it, the first real opportunity to have a shower fell on a day when the keen carer was working – she was here yesterday too and told me she was coming in the morning so I knew there was going to be no getting out of it! What’s more, she had anticipated my concerns about breathing, was mindful of it and worked out ways reducing the water going on my face. So that really set my mind at ease.

It was quite the logistical feat. I went downstairs in the normal way but instead of transferring into my wheelchair I went into the commode/shower chair, had my nightshirt and sling taken off, then wheeled into the shower. The shower is fab – nice and spacious, with little doors which fold (an unintended added bonus is that it’s ideal for washing the dogs in!). One carer stayed outside and operated the shower head while the other came in with me and set about applying the shower gel, getting into all my nooks and crannies as promised – with quite some zest too! As soon as I felt the water on my skin all my concerns vanished, I absolutely loved it.

After my body (every inch!) and hair had had a good clean, I had my bath robe put over my front then was wheeled out, the sling put on around me and taken back upstairs to be dressed. We had another laugh too because when I’m placed on the stairlift chair I have to make sure I’m far enough back on the seat, so the carers always push me back, usually pressing their knees against mine as I’m lowered. Yesterday, one carer apologised to me as she undertook the manoeuvre, saying “oh sorry, Sar – my knee’s up your fanny!”. 😳😂

I love the banter – we’re all women after all, and nearly all women of a certain age, so we can discuss and laugh about all sorts. There’s a danger that I may have to have agency carers in the future and the thought of having youngsters doing all sorts of personal things to me fills me with dread.

Still, one advantage of the coronavirus is that we will be keeping the community team for the foreseeable. And where would we be without such carers? They’re quietly getting on with it, foregoing leave in many cases to make sure they can keep providing care to the most vulnerable among us.

And ensuring I’m squeaky clean all over!

Let’s talk

As I’ve mentioned, I now “speak” via an app on my phone which I type into and which then speaks in mostly my own voice, having banked it whilst I could. This is wonderful technology and I thank my lucky stars that I live in such times, especially as I can no longer write. It’s not, however, without its frustrations.

I’ve come to realise just how fast-flowing our conversation is. The number of times I’m asked a question then, by the time I’ve typed a reply, the conversation has moved on, the questioner has forgotten all about it and looks at me blankly when I speak. So then I have to explain what they asked me – and so it goes on. Or, if I’m feeling particularly bloody-minded, I say “I’m answering the question you just asked me” and leave them to work it out – which usually they can’t! More often than not though I anticipate this problem and simply delete what I’ve just typed without voicing it.

Either that or they continue to fire questions at me whilst I’m still trying to answer the first!

Or there’s an awkward silence whilst I type. So really, you can’t win with me! 😄

If possible, I try to communicate as much as I can without using my phone because it’s tiring typing now. In this instance it’s not helpful when I’m asked a question and given two or more options for my response; or if someone asks me a yes/no question – my grunting response could be translated either yes or no as both sound the same!

My biggest pet hate though is when people peer over my shoulder and at my screen as I type. Some even read it out. I don’t know why but this strikes me as rude and it really, REALLY annoys me! If I can, I contort myself to try to hide the screen! 😂

I sometimes ask myself: if I could get back one ability out of mobility, eating and talking, which would I choose?

Eating is tempting. I’ve always loved my food and used to enjoy eating out or even just having favourites at home. On my trips overseas with work, my evening meal was always the highlight of my day! Weirdly, I still enjoy watching cookery shows on TV. I watch people stuff their faces with huge mouthfuls, move the food around and then swallow – all with subconscious ease, and feel so envious that I now have to concentrate to swallow a small sip of water. My nourishment comes in the form of a milky liquid, delivered directly into my stomach via a feeding tube (a PEG). When I’m hungry now and smell or see the food Sue is preparing my mouth waters. I think of everything, I most miss a Sunday roast. 😋

So, tempting – but then there’s mobility. If I could walk I could take the dogs out, get down on the floor to give them big cwtches and re-establish my bond with them. In fact, I could do anything I wanted – I wouldn’t be disabled! Even get myself to the toilet! 😂 It would also mean we could still go to the caravan, so it’s a serious contender.

But…who are we if we can’t communicate? We can express our needs, our wishes, our feelings, our whole personality. I used to be quite reactive and mouth-off when antagonised, but now I’m far more considered – it’s just too much hard work!

Of course it’s good to be able to communicate important things, but everyday conversation with friends,

family and loved ones – so ordinary, sometimes mundane even – is also so, so precious. A while ago Sue and I went to M&S. It was lovely but I couldn’t natter to her as we pottered around looking at things, me in my motorised wheelchair – if I wanted to say anything at all I had to stop, get my phone out and type. Nowhere near the same.

Words can make or ruin someone’s day. So appreciate the ability of being able to speak and use it to be kind. Instead of texting a family member or friend, pick up the phone or FaceTime them. We all need it right now more than ever.

Wake-up call

I’ve woken up this morning to the news of the youngest victim yet of the coronavirus – a 45 year old guy who had MND. A wake-up call if ever I needed one to just how serious the threat is. I’m lucky insofar as my oxygen levels are currently near-normal but my breathing is much shallower than it used to be.

In fact, it’s one of the first symptoms I noticed, probably coming up to about a year ago now. I always used to sing in the car to and from work and, after some years in a choir, had pretty decent breath control so could hold a note for some time before needing to take a breath. But I started noticing I had to take breaths far more often. And now I can barely breathe in for more than the count of 2. I just can’t take enough breath in, which is why I try to avoid crying as much as possible because it’s so hard to catch my breath, it’s scary.

I must admit to shedding a tear for this guy though, a father of 2. Heart-breaking.

Sue and I have decided to “socially distance” ourselves now to try to minimise risks. Obviously my carers will still be coming (hopefully!!) but no more non-essential visitors. Apologies to everyone whose visits we’ve had to cancel but thank you for your understanding.

Stay safe and healthy everyone. We’ll get through this. 💪🙏😊

If you didn’t laugh…

The last week has been one of the toughest yet, with my tummy problems going from one extreme to the other. Sometimes, such as one morning this week when I was lying on the bed having the hoist sling fitted on me naked, I catch myself and think what my life has become in the space of just a few months. I started laughing at the ridiculousness of wearing the hoist naked (quite the look!), but the laughter soon involuntarily turned to tears. Even the carer welled up.

Luckily, the week also provided me with lighter moments.

I mentioned we’d had a new toilet installed in the bathroom. It’s a fancy automated bidet-style one, with a remote control. One afternoon I had finished my business and was being wheeled away on my commode, and handed the remote to a carer (we’ll call her carer A). She then got behind me to push while Carer B was pulling from the front. Suddenly carer A started gasping and we all felt water – she had triggered the jet wash accidentally and it was spurting everywhere, but mostly all over her back! B and I started laughing, B so hard she couldn’t move – until A yelled at her to as she continued to be drenched! So they hurried me out of the bathroom then dived into my bedroom for shelter – leaving muggins here stranded on the landing, still in the line of fire! 😂 I indicated that I was still getting wet and B heroically grabbed a towel and shielded me until it stopped. We were all weak and crying with laughter, it was hysterical. 🤣

Another evening, I was being put to bed and the carer was bemoaning the fact that that evening she had been sent to calls all over Cardiff, miles apart. As she listed all the areas she’d been to, I started off making sympathetic noises then, as the list continued, mimed playing the violin! She stopped in her tracks, shocked at my cheek – then burst out laughing! 😆

Such moments really help lift me and stop me feeling so sorry for myself. Because this is so tough, so heartbreaking – and so frustrating that I can’t do more for myself. And poor Sue has to carry all of that slack.

As I was lying in bed one afternoon I could hear Sue downstairs in the kitchen. As I’ve written before, she spends the whole day looking after our various visitors and barely gets a moment to sit down. Even when she does she’s invariably doing something for me – on this occasion making a couple of phone calls on my behalf. Cheerfully, as ever. Then chatting to the gardeners again and making yet another round of drinks (coffee-machine coffee, no less – no cheap instant for our visitors!). She really is incredible. We both miss me being downstairs more often – it’s very lonely for us both, especially Sue, but it’s unavoidable at the moment. This week we’ll be doing our best to get my tummy sorted as I’m not getting the nourishment I need at the moment.

Meanwhile we appreciate all the support we’re getting – and get our laughs wherever we can!

A shameless plug

On Saturday 28th March, my lovely, big-hearted friend and former colleague Lesley is organising a walk in my name to raise money for the MND Association to fund research into finding a cure for MND. I can’t stress enough how vital it is that a cure is one day found. Currently there’s not even anything that significantly treats it, just one drug which sometimes delays death by mere few weeks.

It’s a 5K family friendly route around Cardiff which starts and ends at Main Building in Park Place, and will include a treasure hunt/quiz – she’s a quiz fiend, is our Lesley!

Registration is between 9.30 and 11am and you can start walking as soon as you’ve registered. All adults will be given an MNDA t-shirt and a certificate. Under 16s can walk for free and will receive a certificate.

So please email Lesley at walktodfeetmnd@gmail.com to pre-register and let her know your preferred t-shirt size.

Please join us if you can but if you can’t please consider donating at https://www.justgiving.com/fundraising/walktodfeetmndteamWatts-Peters

A HUGE thank you to everyone who has donated so far, and for the truly moving messages. Sorry I haven’t been able to personally respond to them but they mean so much to me.

Sue and I hope to see you there!

This too shall pass – eventually!

Well I’ve just had the most horrible few days. I’ve had chronic constipation – caused, most probably, by the painkillers I was on for tendonitis 🙄. Don’t worry, I’ll spare you the details, but suffice to say I think it’s one of the most painful and uncomfortable things I’ve ever experienced and I’ve been bloody miserable. It certainly proved that I’m not especially brave – I don’t tolerate pain well and if you’d heard my moans you’d be in no doubt. Sue said anyone passing would have thought I was giving birth!

Luckily, after some intervention, it’s finally passed now (again, scuse the pun). As I said to the carers who were here at the time “I feel like a new woman. Do you know any?” They – and Sue who was in the room – all laughed and declared me officially back. 😀

All the carers who visited me during this time were absolutely amazing, so kind and caring and offered fantastic help and advice. I’m so grateful to them. It takes a very special kind of person to be so caring and to deal with all sorts of horrible stuff on a daily basis for so little pay. They are the heroes of our society.

So I’ve been in bed since Sunday, and in that time that watched a lot of TV, much of which has been about the coronavirus of course. I’m not stressing about it but it does concern me of course because it could well kill me due of the effect MND has on breathing. I’m not going out at the moment but we have plenty of people coming here. Still, as I say, I’m not overly worrying myself – there’s no point.

I’m keen to get downstairs to see all the work that’s been done. We’ve had new front and back doors installed this week and work is progressing on the wet room and the garden – or should that be gardens, as we’re now having the front garden done too. Very exciting. But, as I’m now having the opposite problem to constipation, I’m better off staying in bed and out of the way! 😬

Still, I’m missing spending time with Sue. She has been keeping the ball rolling on everything that’s going on, and looking after a very moany and demanding wife – she’s exhausted, bless her.

She’s worried I’m becoming insular and withdrawing from life in general, and I have to concede there might be an element of truth in that – I can feel myself becoming very cautious of any change (ironic, for a former change management professional). We had planned to go out somewhere this week and deep down I’m a bit relieved we now can’t. There, I’ve admitted the problem so hopefully now I can address it. I don’t think Sue will give me any choice anyway. She says that when I’m downstairs and in my wheelchair or on the sofa she sees me, not the MND, but when I’m in bed it’s harder to see past it. There’s my motivation if ever I needed it. All being well, I’ll get up later today.

Time for the rest of me to get moving now! 😉😆

My nod to International Women’s Day

Being International Women’s Day today seems very apt time to recognise one of the most incredible women I know, the woman I’m genuinely honoured to call my best friend, Mills (aka Debbie!).

We’ve been friends for nearly 50 years, having gone to Play-school together. And we’ve been pretty much inseparable since, even though our lives have taken us in very different directions – that has never got in the way of our friendship.

While many of her closest friends, including me, swanned off to uni, Debbie went to work. All these years later she is arguably the most accomplished of us all (certainly more so than me anyway), AND has a degree (a proper degree that you can actually do something useful with!) which she earned while working and raising her family. Her daughters are a real credit to her and John, both being bright, huge hearted and already amazingly accomplished. Oh, and she married one of the nicest men I know!

Since I became ill she has always been there for me, checking in on me most days, trekking all the way over to Cardiff from Wiltshire and back again in the same evening many times. Even when, depressed, I’ve tried pushing her (along with everyone else) away, she won’t have any of it and conspires with Sue to visit anyway to sort me out. Which, with her ever wise, pragmatic words, she always does.

I’ll never forget the moment, all those years ago, when I braved telling her I was leaving my husband…for a woman, and that I was gay. We were in the garden and she simply took a drag on her cigarette and coolly said “Yeah, that figures”. Then congratulated me. 😂

Thanks for everything Millsy, you’re the best.

Letting go

I’ve been laid low the last 2 days with suspected tendonitis in my upper right arm. Absolute agony. I was unable to sleep for 2 nights as it was throbbing, even when not touching or moving it. Of course it would be my “good” arm, so yesterday Sue was having to lift drinks to my lips and tissues to my nose. (An insight into what’s to come, most probably.)

The GP came out yesterday though and I’m now on co-codamol and ibuprofen which has taken the edge off – both the pain, and me! Safe to say I haven’t been very good company, just ask Sue. (And forgive me if this post is a little more rambling than normal!)

So I’m lying here in bed, looking out the window. As it’s a hospital bed I can raise it nice and high and see out the window onto the fields and woods behind us, listen to the birds and watch the dog walkers.

That was me once. If you follow me on Facebook you no doubt picked up on our delight at having easy, beautiful walks literally on our door step. We can be in the fields in minutes, with the dogs off-lead, and several different routes to explore. I loved it. Yet within just a few months of moving here I was robbed of the ability to walk.

I’ve been robbed of my relationship with the dogs too. As I’m no longer able to walk, feed, play with and even talk to them it has inevitably changed things. I do what I can by giving them treats but it’s not the same and they don’t take much notice of me now. In contrast, they utterly adore Sue – a relationship I’m envious of but also delighted by, not least because one day it will probably be Sue’s saviour.

I used to watch the dog walkers with a pang of pain but that has passed now and I’ve made peace with letting it go. I’ve never let anger or bitterness affect me as there’s no point, but it still hurt at first. It wears off with time though and now I enjoy watching the dogs run around having fun. (Added bonus today, I get to see Benji and Blossom being walked by my very good friends Paola and Dave who very kindly frequently walk them for us. I’ve known Paola since our London days, back in the 90s – and haven’t been able to shake her since!)

The next big thing for me to process fully is having to give up our caravan in Pembrokeshire, which, as many of you will know, brought us so much happiness. I love everything about it and have literally never been happier than when we were there with the dogs: early morning walks up the hill, sussing the tides, bacon butties and cappuccinos on the deck, walks on the beach, chats with our lovely caravan neighbours, G&Ts watching the sun set, then falling asleep to the sound of the sea. Our little corner of paradise.

But…it’s no longer practical for us so we’ll have to sell up. I’m heartbroken and still struggling to accept having to let it go. This damn disease has taken so much already but this loss seems particularly cruel.

I’ll get there though. It’s partly why we’re having our garden redone, so we can enjoy the Spring and Summer sitting in it, enjoying the view. It’s nearly finished (will post photos!), now all we need is some sun.

And I need to give myself a good talking to and stop feeling sorry for myself!

Ps. C’mon Wales! 🏴󠁧󠁢󠁷󠁬󠁳󠁿