Head and Shoulders

Standard

So my shoulders have lost their strength and when I have a shower I cannot dry my back. Julia ends up drying me. She is good to me. I feel like royalty; I’m sure the Queen has someone who dries her back.

I haven’t yet asked Julia to wear her nurse’s uniform while she cares for me but it’s just a matter of time…

 

Andrea, Julia’s sister, is also a carer and she’s offered to give me a bed bath – I hope she’s joking – so I’ve got a phrase at the top of the text to speech app ready: “Help! Get this woman off me!”

Also in bed I have trouble moving about to get comfy especially when I slide down the bed in the night. Julia says it like having a seal in bed.

My neck is getting weaker so I’ve had to wear a collar when I’m not sitting in my chair or bed.

Julia bought an Avid Merrion collar..

But I like my Head up collar:

I found it rubbed under my chin and the ventilation physios gave me a gel pad to help.

Sad news: the chocolate puddings are gone as swallowing them was getting too tricky.  I’m on soups or yogurts without any bits (a bit like Dexter).  And I have trouble with soup spoons, even in my stronger right hand, so I have to use a cup for the soup.

Luckily I can still have McDonald’s chocolate milk shake, though it takes much longer to drink nowadays.  And do you know they contain 433 kcals! (all part of maintaining my weight).

I’ve become a full teenager; Julia wakes me up for my breakfast feed at 9am then I’m back to sleep for a few hours till my 12 noon feed. I’m sleeping for 14 hours minimum a night! I’ve also got into duvet days where I spend most of the day in bed getting up for tea.  I’ve tried to cut down on the Netflix and Amazon Prime bingeing.

I’ve had a blood test but the GP says it doesn’t show anything horribly wrong to explain the tiredness – so it must be part of the disease.

If you are into prayer; Please pray I’ll get used to my BiPAP breathing machine for overnight  – it is proving hard to get used to as it seems to be fighting with my breathing. At my last ventilation appointment the numbers had gone down so I probably need to start using it.

You get less than this for murder

Standard

It was 28 years ago today that I forced Michael to marry me, almost 35 since I asked him to ask me out. Our wedding day is as vivid to me now as it was then; I can still feel the prickly net of my sleeves,  the drag of my veil as the wind drew it into the air and the pinch of my new shoes. But the best day of my life was the next day as we headed off in the old Volvo to our honeymoon, the freakishly hot weather easily winning the fight against the fans as the remains of yesterday’s confetti escaped through the windows. I opened our wedding cards as Michael drove and it sunk in that I would have him by my side for the rest of my life. Our future stretched out ahead of us and like the first day of the school holidays it felt as if it would last forever.

The diagnosis of MND was devastating but it hasn’t all been about loss. We are closer now than we have ever been, we get to spend more time together than we ever have and we have more freedom to do what we want than we could ever have imagined having at this stage in our lives. We have been on some amazing holidays, spent lazy days in the garden, had outrageous pyjama days and eaten ice cream in bed at 1 in the morning. We’ve also now got the biggest bedroom in the house and a Super King Size Duvet! Life is good.

Many things are still reassuringly the same; he came in this evening with a dozen red roses and the familiar refrain: “I stopped by the graveyard on the way home”, except this time he used his recorded voice.  It has become normal to me in a short space of time. Laughter is at the heart of our marriage as much today as it was on the day we vowed to stay together forever and Michael’s speech made me laugh until my sides ached. He began by saying “I’d like to thank Ju for turning up today as she usually works on Saturdays”  and his humour has in turns exasperated and saved me as we weathered life’s challenges together.

So happy anniversary darling boy, and let’s hope you get your miracle because I would rather like your company in my twilight years.