The Electric Chair

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How am I doing?
My voice is slowly deteriorating especially in the evenings, and depending who I am talking to they either nod politely or, if it’s family, say “stop mumbling” or “that’s easy for you to say” or make up what they thought I said, and go off on a tangent.  I’ve had to start to bang the table when it gets out of hand, just to get their attention, and they start complaining because of what they thought I said. I think it is part of the “Litt humour” but it gets quite wearing. It is also quite telling; you can see what people are thinking when I’m trying to talk.

I read a book recently (I Choose Everything by Michael Wenham) where the husband of an MND sufferer used to translate for his wife and make up all sorts of things; I assume things like “Yes, your bum does look big in that dress”! It won’t be long before Julia starts doing that too…

On a plus side, Julia says I’ve become a much better listener; basically I’ve lost the ability to interrupt her and so I’ve taken to nodding a lot and responding with “hmmm” and raising my eyebrows at the appropriate moment (yes my eyebrows still work really well).

I’ve cut right back on the crisps, hula hoops and mini cheddars and everything is either blended or chocolate pudding-based.  I should have bought shares in those Tesco puddings, I have eaten so many of them. I have about one feed a day via Audrey – though Julia has to help me as the syringes are getting too stiff for me; either that or my hands are getting weaker.

The other day, playing on the floor with Dexter (my grandson) I found that lying on my back I can no longer lift my head up without getting my hands under my head and by the end of the day my neck is aching. I can hear Mum’s voice in my head; “Stop slouching. Sit up straight”. She was a physio and was appalled at my slouching when I was a teenager. I’ve realised that she was right and so I am now trying to sit up straight. I can imagine she’s looking down from Heaven and smiling.

We went Electric Chair shopping last Saturday; no it’s not that Julia has worked out I’m worth more dead than alive, not that type of electric chair, the one old people have that reclines under control of a little handset. Apparently I’ve got short legs and a long body and so the chairs that supported my head left my feet dangling, and with chairs where my feet were on the ground, my head wasn’t supported. So I had to basically try every chair in the shop until we found one where the top cushion lifts up to support my head and neck. But they did offer us coffee and biscuits (not that Julia let me have anything to eat!).

I also found out that it “rises” to help me out when I’m particularly lazy..

Oops too far..

Bed shopping was worse; as I lay on the beds and the lovely Pauline explained all the features I could feel myself nodding off, and by the third bed she had started to notice and offered that Julia could do her shopping and come back later so I could have a little nap.

The last bed had a massage feature. I sometimes get stiffness in my shoulders and back, and it felt so good, so I’m getting a bed with built in massage. It should be here in 3 weeks. Can’t wait!

Tiredness is still a killer; some days I overdo it, like going to a church service and socialising afterwards and the next day I’m sleeping all morning.

If you’re into praying: Thanks for praying, I’m feeling pretty good at the moment. Obviously I’d like my voice to be intelligible as long as possible. We are fairly busy at the moment; rearranging rooms so we can sleep downstairs and we’ve got Henry fitting a downstairs shower and re-doing the main bathroom so it a bit chaotic. Please pray for calm and peace.

On a lighter note, thanks to Karen for sharing The Lost Voice Guy BGT clip on Facebook today – it made me laugh a lot…

12 thoughts on “The Electric Chair

  1. Karen

    Glad you liked the clip Mike, he made me laugh too so thought I would share him around to my friends. You got me right back with the laughing – loved the photo of ‘oops too far’ as I scrolled up.

    Lots of love and prayers for calm and peace coming your way.

    Liked by 1 person

  2. Becky Rogers

    So good to read how you are doing! Still miss our pub lunches but good to see that Audrey is working hard for you! We have been praying for you and would be lovely to meet up soon. Love Becky and Tim.xx

    Liked by 1 person

  3. Tracy

    It’s really great that you share your experiences with everyone. Hold on to that awesome humour in the most trying of times. Wishing you and your family all the best.
    Will keep you all in my prayers.

    Liked by 1 person

  4. Mike Warner

    Thanks so much for sharing this and of course we are going on praying. We like Tesco’s puddings as well. My favourite is the Bread & Butter pudding. Love from us both.

    Liked by 1 person

  5. Pauline Etheridge

    Thankyou for making me chuckle. You’re so inspirational and I feel honoured to be invited on your journey. I’m loving the chair and can’t wait to meet up with you at the weekend and meet your lovely wife. Keep up the good fight. We watched a good video on Sunday in church supporting our series on 1 Peter. It moved me. I’ll see if I can track it down and send you the link. Love and God’s peace and blessings to you and your family, beautiful man x

    Liked by 1 person

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