Author: sarinthecommunity

Apologies for the delay with this blog but it’s been quite a struggle. Whilst I can still use my fingers and thumbs, my right arm is extremely weak and I can now barely lift it so typing is quite tiring.

This week’s development is that I’ve been fitted with a catheter – lucky me! They tend to be reluctant to fit them because of risk of infections etc but they decided that in my case the pros outweighed the cons and besides, I have carers and district nurses checking me every day. The district nurses are all brilliant too, I’m so fortunate.

So one minute I was asleep and the next I had a nurse standing over me telling me they were going to give me an enema then fit the catheter right then and there. Talk about a rude awakening!

Luckily I’m not too squeamish about such things. I’ve been an egg donor twice and that involves a lot of intrusive prodding about.

The first time, I was 35 and it was all done by a Harley Street clinic. It was totally anonymous, though I did get to write them a short letter for them to read when they turned either 16 or 18.

I had to have all sorts of tests beforehand then lots of scans etc once things got underway. Luckily the clinic had an agreement with Bath hospital ( I was living near Bath at the time) so most scans were done there. As an egg donor you only get expenses paid and I even had to take a couple of days unpaid leave, as I had elected to do it.

You also have to self inject for the 10 days or so leading up to extraction so it’s not for the faint hearted but you use an Epipen so it’s not like having an injection at all.

The second time, within a year or so, came about when I was approached by my ex’s step sister on behalf of a friend. He’d had leukaemia and had frozen his sperm before treatment because he was desperate to be a dad. His partner had a son from a previous relationship but felt unable to go through fertility treatment due to health reasons. So I agreed, though not before pointing out that the chances were stacked against us. But they were very keen to proceed.

It was slightly more complicated because the university hospital we were doing it through insisted they did all the scans themselves so I had to go up to London more often. An unexpected bonus though was when I called the previous clinic for my medical records they told me a baby had been born, which obviously I was delighted about.

And I was lucky second time around too. They had a baby boy who’s now nearly 13 – his parents send me occasional photos which is lovely.

So yes, I’m not too squeamish with injections and being probed so the catheter was straight forward.

Of course now the carers get to examine and discuss my wee too. The other day they were remarking on how healthy it looked and what a lovely colour it was. “Well,”I said, “I’ve got the cleanest fanny in Cardiff, what do you expect?!”. 😂

To end on a serious note, this may be my last blog for a while. I’m not doing so well both physically and emotionally so I’m being put on medication which will keep me calm but also quite sleepy most of the time, but hopefully I’ll be back before too long.

Today I’m posting a poem I wrote for my wife a few months ago, for our fifth anniversary, so some of you have seen it. I hope you like it.

When i struggle to stand

you uplift me,

when i stumble

you steady me,

when i cry with frustration

you cwtch me close.

When i can’t speak

you understand me,

when i mourn last times

you create new memories,

when i surrender to my weakness

you share your unwavering strength.

When i despair

you remind me of hope,

when i stamp with anger

you stamp back, harder!

when i close in on myself

you open your boundless heart to me.

When i grieve inconsolaby for a future unshared,

a life unlived,

a love unfulfilled

You remind me of the precious gift of now.

There’s not much I can update you with this week unfortunately because I’ve mainly been in bed on medication to keep me calm. I reached a point about ten days ago when I decided I’ve had enough. I want out. Quite dramatic, I know, but still true. It’s not even “just” the MND, it’s associated symptoms such as either runny and excessive or thick and sticky saliva, feeling unwell and sick generally, mouth thrush and of course anxiety and depression.

Losing use of my limbs continues to be a major stressor. It seems there are all sorts of aides for losing use of your legs, but not for arms and hands and silly things like not being able to wipe my own nose or mouth upsets me out of all proportion, I think because I’m no longer in control. I’m trapped in my own body. When I wake in the morning I can’t even move my head. Nor am I able to swallow so I’m unable to drink anything – I keep hydrated via my PEG (feeding tube) and Sue occasionally wipes a wet swab around my mouth to keep it moist.

I’m also significantly more tired and weak now so whereas before I thought nothing of being washed and dressed and hoisted downstairs, now just being washed is often too exhausting for me and I need frequent rests. So I’ve been in bed pretty much all the time, drifting in and out of sleep, not even bothered to read or watch TV. I did force myself to get up for a while a couple of days ago, hoping (actually assuming) it would invigorate me but even though I was able to sit in the garden on what was a beautiful day, it did nothing to lift my spirits.

I’m now receiving daily visits from district nurses and am on a syringe driver. For those who don’t know (I didn’t), this is a needle which is permanently inserted into your body and slowly releases medication over 24 hours, rather than having to have several separate injections each day. My medication is for anxiety and sickness and I was on something to lessen my saliva too but that proved more problematic so I’ve come off that. Each day I’ve also had additional injections for anxiety. So I’m pretty spaced out much of the time, but nothing is helping the depression. There have been times when I’ve closed my eyes and willed myself to just drift off and never wake up again.

The district nurses are great and stress that they’re happy to come out as often as I need. In response to being told this I meant to say “wonderful”, but mistyped it and, thanks to my speech app having no auto-correct, I instead ended up saying “wonderfuk” – which actually I think is a fab word and might adopt it!

Sue is, as ever, being amazing. 100% understanding and supportive of how I’m feeling and there for me all the time. I didn’t think I could love her anymore than I already did but I do. I’m so, so lucky to have her in my life. When I’m feeling especially low, I now like her to stay with me while the carers do their thing, to comfort me. So she gets to see all that they do.

I’ve had a bit of sore skin in my groin, due to the pads, so I tend to get a daily updates on how it’s doing, such as “oh yes, that’s looking so much better now, look how lovely it looks.” I couldn’t resist grabbing my phone and commenting to Sue the other day “my fanny’s never had so many compliments!”

Sadly, humorous moments have been few and far between lately and I’ve been so weak, ill or miserable to engage with the carers at all, which i feel bad about as they must think I’m a miserable cow.

I’m hoping that once I’m on the right balance of medication I’ll feel a little less spaced out and a bit more able to cope. No more talk of me being brave please, as this certainly isn’t bravery. Wanting out makes me a coward. Sue’s the brave one. As some of you know, I wrote a poem for her a few months ago and I’ll post that soon.

In the meantime I’ll try to pull myself together again and feel wonderfuk!

So good news, my carbon dioxide levels have decreased, which means the ventilation is doing its job. What a relief. And the respiratory team are so pleased with how well I’m getting on with it (and how brilliantly Sue is doing putting my mask on with minimum leakage) that they’ve increased the pressure twice more as well. I sleep really well with it on, it’s quite soothing,

I must confess, I reached a point last weekend when I no longer cared. I’d had enough. I know I’ve taken a downturn and am resigned to it so my focus now is quality of life rather than quantity. I have a DNR in place and I’ve spoken to the palliative care consultant and my GP who fully support my wishes and will help me be as comfortable as possible.

So I’m now on lorazepam twice a day to keep me calm, which seems to be working. It makes me sleepy but I tire so easily now anyway.

We had a bit of a shock this week when the powers that be in the community care team decided they could no longer provide the care I now need and pulled their carers immediately after the first morning call, their intention being to move me over to specialist Marie Curie-trained end of life carers! Just like that, no warning, no consultation. Sue was having none of it and nor was one of the carers and between them they got it sorted. So instead I’ll be assessed each week and in time I’ll be slowly transitioned across but for now they’ve agreed that my current carers are still able to give me the help I need. In fact, the carers themselves had decided if they were pulled, they’ll sort out a rota between them, around their personal time, and keep coming. They continue to blow me away with their kindness.

It’s an odd thing, facing up to one’s death. To be honest, I’ve been doing it since diagnosis and am fairly at peace with it. I’ve been reassured that when the time comes I’ll be made comfortable and calm and that’s my main wish. That and to be at home. The GP has sorted out the necessary medication to have at home and district nurses will be on hand. More importantly, so will Sue and the dogs.

We talk so glibly about death but only from a safe distance. When it’s so close we become less brave. Having no faith, I have no concept of what happens but I hope that my spirit will live on, in peace, so I can always be at Sue’s side.

But none of that is immediately imminent. I tire far more easily and am weaker but I’m not ill as such – no chest infections which often trigger the very final stages.

Of course none of this has happened without Sue’s undying love and support. She astounds me every single day. She uncomplainingly and lovingly attends to my numerous needs (wipe my nose, scratch my head, roll my sleeves up, roll them down, shift my ankle, bend my leg, cover me with a throw, take it off etc etc), while dealing with everything else that needs to be done, all with patience and good humour. She never complains just cheerfully gets on with everything with unfailing kindness and humour. I am in total awe of her.

Thanks for all the messages I’m getting, it’s so lovely knowing people care. Please don’t be offended if I don’t always reply but I promise I’m very grateful.

I took further emergency measures this week too and ordered a case of Ned Cabernet Sauvignon blanc for Sue – can’t have her running out! 🍾😀

Recently I’ve been feeling overwhelmingly tired and weak all the time and things are really getting to me, especially when I start pondering what it might mean. With the saliva and breathing problems I’ve been having too, the last week or so has been the toughest to date. I’ve been very low and very anxious, and was really questioning if I could, or even wanted to, carry on. I really thought it might be the beginning of the end.

To make matters worse, after 3 nights on the ventilator my carbon dioxide levels hadn’t gone down, which meant the ventilator wasn’t working for me and it has really scared me. I’ve adapted to the ventilator really well – apparently most people can only tolerate a couple of hours at first but I managed a whole night straight away, no problem at all. In fact I find it quite soothing. But the thought that this may not work for me is extremely concerning because without ventilation help I start running out of options. I think I have to accept that I’ve moved into a new stage of this disease – but I’m not writing myself off just yet.

I started getting especially anxious about getting washed and dressed as it involves being laid flat at times, which I can find difficult because of my breathing, and even more challenging when I can’t swallow properly because of thick saliva. So I’ve been asking the carers to minimise the time I have to lie flat. Which they’re always more than happy to do but I hate being a nuisance and I think that’s what triggered the morning anxiety and panic attacks. Completely irrational.

Last week I had two carers who haven’t been often before and not for some time. I like and trust them so it wasn’t a problem though it was a tad chaotic. When we finally made it downstairs one declared “oh that was like a bush tucker trial!” I said I’d never been likened to one of those before and she hastily clarified it was a trial for me, not them!

The respiratory team upped the rate on my ventilator yesterday (they can do it remotely) and this morning when I woke I definitely felt better. For a start, I didn’t have my usual 7am panic attack. Then when the carers arrived I felt up to having a shower, which did me the world of good. I was joking with them again too, which I’d missed.

They queried the term BAME, which was being discussed on the TV, so I explained it to them then pointed out that it’s my job to educate them. 😀 Later, I asked them to keep the water off my face when showering me (because of my breathing) and afterwards said “It’s also my job to be a diva”. One that they say I do very well!

At one point they put me on a slide sheet to move me up the bed – which they did with such force my head banged into the bed board! They were horrified but I thought it was hysterical – though I did ask if they would bring me a helmet next time and, as they were leaving, I said “thanks both. Actually I can see four of you.” 🤣

As predicted, my right arm is starting to go. Last week I was set up with EyeGaze technology. It’s what Stephen Hawking used – you look at a word on the screen and it speaks it. So clever! The device I’ll be using is quite big and cumbersome- it attaches to my wheelchair, so it’s not nearly as convenient as using my iPhone – and it’s actually really tiring to use, but soon I will have no other option. Meanwhile though, I’m still able to type on my phone, it just tires me out quickly. So writing these blogs might be affected unfortunately, though obviously I will try to do what I can and will continue using my phone as long as possible.

My oxygen levels will be tested again on Monday so fingers crossed for good news.

Meanwhile I maintain my right to tell my carers “I’m a diva, get me outta here!”.

A Facebook memory from a year ago this week has reminded me of the journey I’ve been on over the last year.

We went to a family birthday celebration one weekend and Sue’s family asked her if I’d been drinking before coming out because my speech was slurred from the start (how very dare they! 😂). By the end of the evening, during which I had drunk, it was a bit worse (though not intelligible) and Sue thought my face was slightly drooping on one side. She was tempted to take me to A&E but I pointed out that as I’d been drinking they probably wouldn’t take it seriously- and besides, I felt fine.

I had had some symptoms prior to then, I just didn’t know then that they were connected. My breath was a little shallower (as evidenced in my singing, as I’ve written about before), and my legs weren’t right – they felt slightly heavy. I’d noticed at Christmas that I was struggling to stand from being crouched down and my fitness levels were worse than they should be. In the New Year I’d tried starting the Couch to 5K programme again, having successfully completed it in the Autumn. I knew I’d put weight on since and I was obviously wasn’t as fit, but I was taken aback at how much I struggled. Still, I just put it down to getting older and chastised myself for gaining weight. Again. 🙄

Anyway, three mornings after that night out, I got out of bed to get ready for work and promptly blacked out, dropping to the floor. Now, in my entire life I have blacked out/fainted twice before, both times when giving blood, so I am not a blacker-outer. 😁

For Sue, after how I’d been Saturday night, it was non negotiable – she was taking me to A&E.

To cut a long story/hospital wait short, they concluded I had probably had an episode of mini strokes but I was ok.

A week or two later I went for a lunchtime walk at work. My walking felt funny again and then I stumbled for no reason. Alarmed, I rang Sue who told me to come home and ring the doctor, which I did from the car. She told me she thought I was having a stroke and to get myself to the hospital in Merthyr because it has a specialist stroke unit.

To cut another, even longer, story/hospital wait short, they concluded I probably had some kind of progressive neurological condition and referred me to a neurologist. Unfortunately they didn’t mention MND in the referral or I would have been fast-tracked.

We found out that the waiting time for an appointment with the neurologist was a whopping 34 weeks! Luckily my lovely parents came to the rescue and offered to pay for us to go private for the initial consultation. We did some research and found one we liked the sound of. Even then we were looking at a wait of a few weeks but thanks to Sue’s determination and tenacity, we managed to get a cancellation and saw him towards the end of June. He instantly ruled out MS, which we had been hoping for, and referred me for an MRI and nerve conductivity tests. There is no test for MND so they rule everything else out.

I had the MRI at the end of July, then the conductivity tests on 6th August. With these, electrodes were attached to various parts of my body and electric currents sent down them. It wasn’t pleasant! The worst part was the sound – there was this loud static-like noise which increased after each shock. I had them on my arms, legs, neck, face and even my tongue! It was mostly uncomfortable rather than painful though a couple of them did feel like proper shocks and did hurt. I think it was as hard for Sue to witness though.

At the end, the doctor asked if I had any questions so I asked when the results would be sent to my consultant. His response blind-sided us. “I’ll be able to send them within the next few days, but I can confirm it is what you think it is. It is MND.”

We hadn’t expected to find out there and then so obviously it was quite a shock. But we were grateful because it saved us an agonising wait. Overall, I was quite lucky to be diagnosed as quickly as I was – many undergo months or years of strange symptoms and tests for all sorts of things before it’s identified, largely because GPs don’t see many cases so don’t think of it, and everyone presents differently.

Today I learned that my breathing is starting to be affected and I’ll need to start overnight ventilation, which apparently takes some getting used to. The good news is it should sort out the overwhelming fatigue I’ve been feeling recently, so bring it on! Wish me luck!

That’s what one carer declared the other one to be the other morning! In fact, someone had once also told her “if ever I shit myself, it’s you who I want cleaning me!”. She is indeed thorough! 😂

Such banter often occurs over something that is of course an intensely personal intimate moment. Quite literally. I can’t help but chuckle to myself as they’ll be mid cleaning me then stop what they’re doing to gesticulate along to their conversation, as I lie there completely naked between them. 😳😁

I have to be honest, though. I’m going through my hardest time yet, with my anxiety increasingly turning into panic attacks. I think what’s at the root of it is losing use of my arms. I can still use my right arm but, as I’ve written before, I will lose function of that before too long and it terrifies me. I won’t be able to do anything for myself and it’s the little things that are bothering me most, like wiping my nose, putting my glasses on and off, scratching my face, moving the duvet over me at night. I’m terrified and it’s starting to spiral out of control.

I’ve got a hang up about waking and getting up now. The carers have had to stop and give me a moment several times as they’ve washed and dressed me the past few mornings as I’ve got myself into a bit of a state. Once I’m downstairs and in my wheelchair I’m generally ok but when I’m in my bed it grips me. I’ve adapted pretty well to the loss of function up to now but I can’t see a way through this.

So I thought now might be a good time to think of the positive things that have come out of this relentlessly cruel disease. Don’t get me wrong, in no way do they come anywhere near balancing the bloody awful things, but it’s an attempt at being upbeat.

Firstly, I get to spend all day every day with Sue. We love being together and always wanted to retire at the same time. Of course, not in these circumstances, but we’re determined to make the most of this time and just appreciate what we can, while we can.

Next has to be the insight I have had into the world of carers. It is truly a privilege to witness the amazing work they do and the difference they make to people’s lives every single day. With the coronavirus, the whole country is finally realising it now, and rightly so. Here’s hoping it inspires future generations to aspire to be carers and other healthcare workers, rather than overpaid footballers and celebrities. I now consider many of my carers my friends. They bring so much to our lives and I love them.

Also, I now have the perfect excuse to only wear comfy clothes! I always would have before I was ill if I’m honest but a combination of work and, more to the point, being married to Sue meant that was never an option. 🤣

Apart from anything else, having stretchy clothes is really helpful when others are dressing you. My carers like my stretchy clothes so that’s a good enough reason in itself, quite frankly.

Even better, though – I don’t have to wear a bra anymore! Largely because of the position of my PEG as it’s quite high up. But also I just can’t be bothered.

So, comfy-clothes-and-no-bra days every day for me! Jealous? Well wait til you hear this…

Last week I had a haircut! One of my carers used to be a hairdresser and, on her own time, cut my hair for me. Ha!

And finally, not forgetting I’m cleaned by the best foo-foo cleaner in Cardiff!

So these might be dark days for me but I shall try to remember these small blessings and be grateful. I hope you are managing to keep your demons at bay too.

So lockdown continues and, alongside it, so does my own body lock-in, as this damn disease progresses to my arms. My left arm is so heavy I can barely lift it now so is pretty useless. My right arm’s movement is becoming restricted too though it doesn’t yet feel heavy and my hand is still fine. I must admit I’m terrified of losing use of both arms and this is now affecting my sleep (having just conquered coronavirus night terrors!). Arms are so much more useful than legs, I’ve realised!

Each stage of this disease is hard to come to terms with but this seems the scariest yet. All along I’ve begged it to “just stop now, please stop now and I promise I’ll be grateful“ but it pays no heed and marches relentlessly on.

When I wake in the night, I’m often too warm which only increases my anxiety and I’ve had to get Sue up to move the duvet off me, open my window wider and cool my face with a cold flannel (have I mentioned how wonderful my wife is?). Once I’m cooler I’m much calmer.

In light of this, we splashed out on a couple of Dyson fans – you know, the blade-less ones. We’ve set mine up and it’s fab. It has a remote control so I can turn it on and off, increase/decrease power and even set a timer for it to go off – all from across the room in my bed! And without having to disturb Sue. It works a treat. Oh I do love a gadget!

I’m hoping that even when my right arm goes I’ll still be able to operate the control. I have to think about what I really need during the night. I’ve already had to adapt to sleeping on my back and once I’m in position after the carers leave I’m stuck like that all night. Luckily I can raise and lower the top of the bed as it’s a hospital style one, and that helps. Still, I miss being able to turn over and lie on my side.

I need my phone so I can listen to sleep music and ring Sue if necessary, and perhaps my kindle. I’ll have to have those in or on the bed with me as I won’t be able to get them off my table. Hopefully I’ll do what I’ve done all along – adjust and adapt. What other choice do I have?

Generally though, I’m doing better. Whereas previously I was staying in bed part of the day, for the last week I’ve been staying up all day. Of course the lovely weather helps – when it’s really warm I like to sit in our beautiful new garden with Sue, reading and listening to the birds sing. And now my last carer call of the day is at 10/10.30pm, as opposed to 8/8.30pm, which is great as Sue and I get all evening together. Perfect for the longer evenings.

One day last week was significantly cheered by an unexpected phone call. It was from one of my very favourite carers – the one who told me shut up! She’s currently off work ill and rang to say she’s missing us desperately, more than her own sisters, and she speaks about us to her husband so much he feels like he knows us! I miss her too. By the end of the call all three of us were in tears, we were so happy to hear from each other. It really lifted me. And moved me beyond words that she should care so much.

Things have settled somewhat with regard to the carers. We know we’re lucky that we get to see and talk to different people every day. We’ve got to know the “new” ones and most of them are absolutely brilliant. Not to mention entertaining.

One afternoon one was singing as she moved around the bedroom and bathroom. “I’ve a voice of an angel, haven’t I Sar” she exclaimed. As soon as I could, I responded “yes, a Hell’s angel.” 🤣

Of course we clap for carers every Thursday evening (as I can’t clap, I’ve downloaded an “applause” app!), but we’re grateful for them every single day. Whatever lies ahead for me, it’s good to know they’ll be there for my corny jokes!

I’ve mentioned previously that I’ve been quite anxious lately and having panic attacks in the night. Sometimes I wake up feeling panicky, before I’ve even had time to think. It just sort of spreads up my body. It started when I was having trouble swallowing due to thick saliva which made me feel as though I couldn’t breathe properly. I always fear death will soon be knocking on my door so this terrified me.

I’ve been saying all along that I’m not overly stressing about Covid 19 but I’ve now realised that, subconsciously, I definitely have been. How can I not? How can anyone not?

So yesterday my palliative care nurse visited as she had previously offered to come so Sue asked her. We’ve learned that palliative care nurses are there for symptom management, not just end of life care, and she’s lovely. We have of course had those difficult conversations and I’ve documented my wishes, but yesterday she reassured me I’m not showing any signs of being near the end, which was a huge relief.

I’m not through the woods yet with regard to my panicking but I wondered if it might be helpful if I shared my coping mechanisms for nighttime anxiety.

I used to be an advocate of mindfulness but it no longer works for me. My breathing is too shallow to do it properly and following my breath as it now is only draws my attention to it and stresses me. So I’ve had to find other ways.

My number one, go-to tool is Spotify. It has a wealth of playlists of sleep-inducing music and sounds, such as birds singing, rain and the sea. You can also ask Alexa to play sleep sounds if you have a device. I put my favourite playlist on and set the timer for it to go off after 30 or 45 minutes, then lie back and let the music wash over me. It seldom fails and often I’m asleep before it goes off.

I also like the sound of birds singing so sometimes I listen to a bird song playlist or, if it’s around 5am, simply listen to the real-life dawn chorus outside my window. Beautiful.

If I need more distraction, I’ve compiled my own playlist of beautiful, soothing songs by my favourite artists and lose myself in the music and lyrics for a while. My favourite is This Is Love by Mary Chapin Carpenter who has the most comforting voice.

If I’m wide awake and no chance of sleeping for a bit I listen to an audio book. Or if I’m feeling particularly anxious I put a comedy podcast on for half an hour, just to banish any dark thoughts. The other night I listened to Matt Lucas’ Bitch Bitch Bitch in which people moan about their jobs. This one was flight attendants of whom I have a lot of experience of course so it was very entertaining!

Another tip which has worked for me is courtesy of my best friend Debbie. Imagine going for your favourite walk, step by step, taking in all the sights and sounds. The other night I imagined being back in the village I grew up in (Aldbourne in Wiltshire), walking from my house to the village centre to catch the (Barnes!) coach to school.

Just as an inside, I’ll explain the coach reference above. Barnes coaches used to transport children to school in Marlborough from surrounding villages, including Aldbourne. In fact, they were from Aldbourne, their depot being in the village. They’ve grown significantly since then and are now based near Swindon. If you take a trip along the M4 the chances are fairly high that you’ll see one of their turquoise fleet, and each time I do I triumphantly exclaim “Barnes coach!”. For some reason, no one ever seems nearly as excited as me…

A personal highlight for me was when I was hosting a group of Chinese students at Cardiff Uni one time and was waiting for them outside as I was taking them on a tour in their coach. And guess what coach it was? Indeed! So not only did I get to go on a Barnes coach again but I got to use the mic for my announcements! Excitement levels peaked that day, I can tell you.

Anyway, I digress. Those are all things I’ve used over the last few weeks. Those and keeping cool, so I always sleep with the window open. I also keep the curtains partially open so I can see the beautiful sun catcher that my sister kindly sent me, and the trees at the top of the field opposite. I find seeing those calms me too.

We’re all different and these may or may not work for you but I hope something might help someone. Failing all else, revisit this blog and my Barnes coach story. 😂

Everyone is saying be kind lately – easy to say but how many actually follow through?

Well we’ve seen it a lot. Three of our carers have brought us presents for our new garden and one carer, on learning that Sue is having some skin problems, brought her some cream and shower gel that had helped her. Another picked up a treatment from the pharmacy for me and refused to take any payment for it. A neighbour gave us a picture of Benji and Blossom on Newgale beach and a friend of Sue’s left a bag of lovely gifts on our doorstep to cheer us up. Even our cleaner brought us a present – a door mat with welcoming Welsh words on it. So kind.

One carer told us how upset she was after visiting me for the first time, struck by our similarity in age and the cruelty of it all. Apparently she left in tears. And when I got tearful one morning as she and another carer were washing me, she did too – in fact it upset them both.

I don’t know why but I always imagine that new carers in particular see me as just a complicated, hard work call. It seems every day lately we’ve had one brand new carer turn up and as I’ve mentioned before it stresses me out. Not just because of the risk of things going wrong, but also because, deep down, I feel ashamed.

What do they see? This woman who can only talk via a phone and who, for the majority of time, can only grunt responses or use basic hand signals. Whose heads is dropped forward whilst in transit, causing her to grunt and dribble involuntarily. And who then has to be rolled from side to side on the bed to be undressed, washed, and dressed again. I cringe inwardly at how I must seem. I hate this version of me.

I mentioned last time that I’ve been feeling low and I honestly think this has contributed to it. I’ve lost sight of the person I once was. Who held down a job, chatted easily with friends and colleagues, loved walking the dogs, could cook dinner in the evenings and snuggle up to her wife at night, planning the next day’s activities. How I miss that person. That life. I’ve been missing it a lot lately.

It’s a person these carers will never see. But the regulars see glimpses I think. They see me as me, whereas those that only visit once or twice can’t.

It’s made me quite insular again. Which isn’t fair on Sue so I need to sort myself out. She tearfully told me this morning that she’s going to have too long without me as it is, but she feels I’m already not fully here sometimes. That pulled me up.

So I need to find a project to keep me occupied and to prove to myself that still am that bright, able person. And I need to appreciate the little, kind things that people do and say. Not to mention the kind things Sue does for me every day.

Benji thought we were really kind last week. Sue set my feed off at night as usual – I was already fast asleep – and when she went to unplug me in the morning we discovered that she hadn’t actually connected me, so the feed had all gone on the carpet, which Benji found and helpfully lapped up! 🐶 😬🤣

This lockdown is causing all of us to take stock and rethink things. Maybe I should use the time to learn to be a bit kinder to the new me.