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! 😂

9 thoughts on “The new, weird normal

  1. I think this blog is a great idea, and is certainly a good way of spending your time, Sarah. More than that, it is hugely insightful both for those who have the condition themselves and those who care about them. Have you thought of contacting charities / health associations / health programmes for TV/radio with it, so you can share with a wider audience?

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  2. Hi Sarah, hopefully I’m on the mend now I am feeling better than I did . Iv missed seeing you and sue especially missing my daily caramel latte lol . You take care and dont worry about upsetting the carers they are there to look after you and should be more mindful of your preferences dealing with your care . Cant wait for your normal few to be back in work and caring for you as you deserve . Give my love to sue and hope to see you soon , love you both to bits xx

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  3. I really love reading your blog Sarah, you most definitely have a natural skill for it and I agree it needs a wider audience to also appreciate it. I wonder if you have any media savvy friends to liaise with the MND and get this on their website etc?
    Hope you’ve been able to feel the sun on your face this week.
    As for hobbies, I agree you have to ditch the daytime tv! It’s a brain drain! How about online gambling instead (that’s a joke Sue, don’t panic! 😄). I like to watch old videos of Bob Ross painting, he’s so relaxing! Ancestry sounds like an interesting pursuit tho, stick with that for now!
    Love Sarah x

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    1. Thanks so much Sarah. Someone from the MNDA did say they’d email me about the blog but that was a while ago and I haven’t heard anything. There are so many blogs out there though, I can’t imagine anyone being interested in yet another one! Really glad you’re enjoying it tho. Xx


  4. Not happy with the trauma u go through with some carers Sar🙀. Why don’t they ask u what u need and want? Thank goodness for the fab ones. 👍

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