No rest for the wicked………

So I’m typing this on Monday at silly o’clock  after I’ve arrived back from Italy, Sunday night…..🙄……now most people would have booked themselves a rest the day after, and I would have done, except…..it was Minds and Voices…..AND we had new people arriving for the first time, so how could I miss it…….Tuesday I will snuggle…

Arriving back from Italy has proved to be a tad scary as Italy had become normal…I’d gone over my normal 3 days away and leapt into 5, so I wasn’t quite sure what to expect I had to make a new normal. Whether it was the same normal, I don’t know as I don’t remember what the old normal looked like😔

Once I turned the key into the lock I soon realised that if I thought about things too much I got more confused, so I decided to go with whatever my body did…..I’d already looked at my shower the previous night and wondered what I did, but in the morning ‘I just did’ and it seemed to work…..overthinking is bad 😂 I’d spied my bottle of diet tonic on the kitchen side and realised I hadn’t drunk that while away ….so that was why I’d had such bad night cramps while away and last night….the quinine in the topic has been my rememdy for years. Quinine tablets give me hallucinations, so tonic has always been the solution, but I’d forgotten……but now back in my routine again…..

Sarah had booked me a taxi in Italy and I’d set my reminder so knew that was all done. It was a new unfamiliar man who drove up, I only know that, as he didn’t seem to know me. As we trundled along the dark damp road, he asked me where I was going. I told him York, but I’d come back from Italy last night…..and then began the familiar sowing of seeds about dementia……he told me of his mum and a programme he’d watched and we chatted happily until we reached our destination……sowing seeds in one person at a time is time consuming but one is better than none……

Damian was picking me up at the station so I tapped away on my iPad and then played solitaire to wake my brain, as darkness meant there were no hopefully familiar views to look at through the windows. Apart from the headlights coming towards us and the myriad of tail lights in front …..red 10, black Jack……..

As we edged our way forward, through the early morning traffic, images started to appear outide….the world was waking up….and allowing me to spy it’s simple beauty again….

And then when I got to York……well the stillness of the autumn beauty filled me with calmness

I managed to pick up sunflower lanyards for everyone from York train stations, as not are airports recognising them but train companies are coming on board now, for anyone with an invisible disability…….and someone did say Marks & Spencer are starting to recognise them….

Damian and his son Joe picked me up and we had soooo much to catch up on. I asked if I could highjack the first 30 minutes of the meeting. I wanted to make a 30 second video for the Xmas advent calendar I’m putting together and also to ask for their suggestions…..and fill them in on Italy and how they got their mention!

We were expecting 2 brand new playmates who had been referred by the Local coordinators who are employed by the council and social services……….

People started to arrived and in the end we were 18……the most yet!!! And we were even people missing due to illness! Magic magic magic……

I highjacked the first part of the meeting. Told them how I mentioned Minds and Voices in Italy, how Eddy and Pat appeared on screen with the Getting Along project, so now they’re known in Italy. I gave them all a lanyard and heard their stories of travel……leaving from Manchester, didn’t fair very well……..and then we made a the video I needed for window 25 of my Advent calendar…..and got some suggestions for the rest of it……

Sophie from Hull Uni then took those that wanted, to another room to talk about dark humour …

The rest of us suddenly started to randomly talk about what the community can do and peer support …….Brian was saying he talks to his local parish council as he used to be a member so knows them all …..we said how more people with dementia are speaking out and Peter said…..”We need to hurry up…as I’m forgetting who I am…”

Then the care home situation came up ands the cost of it…..

It’s not right that people won’t face it” because of being afraid to won up to having dementia. said Peter…..”It’s not through their own fault”

Eddys wife said, that his Gp never asks him how he is coping with his dementia? He feels like he’s left behind…..he’s being ignored. He just wants someone to take an interest and be able to talk about his issues, but no one is interested.

Rob said “it take no training in dementia to ask ‘how are you coping with the dementia”

And ‘we wouldn’t have known anything unless we’d have come here and listened to other people living with dementia – medics have taught me nothing ”

Peter said, ‘The Gp gave up on us”………”If they were in our situation they would do something” “I’m not giving up”…………

Peter was on such good form today – he was so animated….

Damian then told everyone about the UK Dementia Congress…….we’ve been invited to take Minds and Voices to have a meeting at congress that people can come and watch on the Wednesday at one of the workshop – if you’re at Congress, please come and join me and my playmates !!!! 12-1pm

Damian then reminded people of our Dementia Enquirers project…….people with dementia leading on research ………ours is on living alone or living with a care partner…..so they had a meeting, that I couldn’t attend……we’ll have 2/3 focus groups, interview some individuals, but we have to get through ethics first……👍💪🏻

So we need to decide on the questions….which started off a very animated, interesting  conversation……wonderful!❤️ The whole of the next meeting will be taken up putting together the questions we need to ask……

Eddy said his biggest fear is waking up and not knowing who Pat is…

Pat said….”well it will be like waking up with a different woman everyday”

🤣😂🤣😂🤣😂🤣

The second of our project is with George Rook’s group in Shropshire around Admiral Nurses and for that we will come up with a questionnaire …..

We finished by looking through the latest bumper issue of the DEEP Newsletter…❤️

We had the most amazing meeting today and I’m so glad I went…….so worthwhile seeing my playmates…..can snuggle on Tuesday…….

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

5 thoughts on “No rest for the wicked………

  1. Sounds like a great meeting, worth pushing yourself for.

    Thanks for the tip on tonic water. I too have terrible night cramps, and find that a balance of minerals help. I take calvcium anyway, but have added a magnesium tablet, and a banana a day for potassium, has reduced it, but might include some tonic water to see if it adds to the existing benefits.

    Good luck getting back into routine. X

    Liked by 1 person

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