Patients Know Best……apparently

Maybe I’d agreed to appointments being sent online at some point but obviously I’m not going to remember that am I 🙄…so when I received an email telling me to log into a web site I was a tad dubious at first….but it seemed to have all the right detail and I was waiting for an hospital appointment …….

 “Patients Know Best” –  that’s the name of the email account where my hospital appointment was sent from…..the link takes me to their healthcare web site with the same name  “Patients Knows Best”, and there was my appointment….. but then they sent me another email a day later taking me to the link saying it was cancelled🤯….no explanation, no apology…..then another email, another appointment came through from them in quick succession …..and another…..

I’d been expecting an appointment to see someone, wasn’t sure who or what department after I’d been having strange episodes when out and about. Episodes which felt like my body was draining of blood, draining of all energy from my head to my toe and feeling as though, if I didn’t sit down I would fall down. I felt a bit like a balloon and someone was slowly letting the air out of me……

It seems to have happened many times now. Not like fainting, just like my body is turning off a supply slowly…. Often, if I’m nearer to my house, maybe in the garden, I can feel them coming on and I go inside and sit down for a while, then I’m fine. However, once I was at my daughters, pottering in the garden and they suddenly saw me slumped against the garden bin and came out and helped me inside. After a lie down and a cuppa I was fine.

It’s happened by the pond and I’ve had to lean against the pond for a while to regain strength enough to get home, knowing it was only a short walk.

But then the worse episode was when I was out for a long trundle through the fields, one I’d done many times. I felt the weakness starting through my body but knew I was close by the lake. I managed to get to the lake and sit there but realised it wasn’t going to go away this time. I txted my daughter to see if she could come and get me as it was the last part of my walk with car access. I walked up from the lake towards the gate but could feel my body becoming weaker and desperately needed to sit, but of course there was nowhere. By the time she got to me I’d almost gone and was hanging onto the fence. I’d staggered across the road holding onto her arm and fell into the car…..apparently I looked very pale and wasn’t able to answer her questions and that lasted until we got to her house, where after a sit down and a cuppa I was ok again. I wasn’t dehydrated.

 The last time it happened was just last week when I was in town. I’d filled my shopping bag too full and was walking slowly to a shop where I was luckily meeting Gemma who’d txt me asking if I wanted to meet her at one of the shops. As I walked along, stopping every now and then to change hands, I could feel my body shutting down again. I seem to go on automatic, unaware of people or things around me. But I saw some steps a few doors down from where I was heading and just had to stop and plonk myself down on them. I mjust have looked odd, slumped on the steps, so after a few minutes, picked myself up and slowly went the last few years and sat on the ledge outside the shop. Gemma arrived a few minutes later and instantly saw that I wasn’t well and helped me across the road to a bench where I sat while she went to get the car…..

I would normally have hoped my Gp would sort me out, but not this time.Blood tests have come back normal, which I knew they would, as did my blood pressure, as I knew it would. I needed it to be done at the time to show any abnormality. It feels simply like my body is closing down and I want to curl up and close my eyes….

Anyway that’s why the Consultant appointment was needed. I wouldn’t have accepted it under normal circumstances as it would be at Hull Royal, my least favourite place. I would have put up with whatever was going on. But this is stopping me enjoying my walks, my long walks. I havn’t been out of the village since the worst episode as I’ve lost all confidence in myself to venture out through the fields which I love so much.  Some would say ‘go with someone’, but what can they do if it happens, they can’t get me home, they can’t suddenly produce a nice comfy chair for me to sit on. So I feel stuck, hence why I need to sort it out.

My Gp hasn’t spoken to me, hasn’t seen me. All her information is coming third hand through Sarah, who obviously tries to describe the episodes On my behalf and my Gp can’t offer me video calling…🙈…so that’s why the referral initially went to the Neurology Department….sheer guess work I suppose, not having spoken to ME.

In this strange world we find ourselves in you would think Gp practices and hopsitals would automatically offer patients a choice of contact……well maybe some do but mine havn’t….and it’s been very frustrating for all of us. Once again the patient has to fit into services the way they want to deliver them and not offer a choice that might be more beneficial to the patient……The web site suits me but I imagine countless others may find it very difficult.

As for “Patients Know Best”….well that’s just a joke of a title….…find out what happened with the actual hospital appointment via phone tomorrow ……..

 

Answers to the lunch Foodie Quiz…..

So how well did you do on lunch…..? Here’s the questions along with the answers…..

1. I’m stuffed with beef, turnips, potatoes and onions, and was first served in south England, what am I? Cornish pasty
2. I’m found in Devon and people often argue about which is spread on me first, what am I? Scone
3. I was invented so John Mantagu wouldn’t get both his hands and cards dirty during a gambling game, what am I? Sandwich, 4th Earl of Sandwich, John Montagu.
4. I have a thin layer of fat, and am kinda a big deal in Melton Mowbray, what am I? Pork pie
5. I’m a bit like a pasty, but I have a savoury filling at one end, and sweet at the other, what am I? Bedfordshire Clanger pastry
6. I’m a delicacy, found in Colchester, and the Romans loved me, what am I? Oysters
7. I famously appeared on Wallace and Gromit, what am I? Wensleydale cheese
8. I’m made from bread, cheese, beer and pickles, and served as a lunch, what am I?
Ploughman’s Lunch
9. Fortnum and Mason claim to have invented me in 1738, I’m round, I divide the nation,
what am I? Scotch egg
10. I’m known as a staple in the English diet, to anyone who doesn’t live in England.
They think we eat them while drinking afternoon tea out of a teacup. In reality, we don’t, what am I? Cucumber sandwiches

Todays Quiz is another foodie quiz……all things lunch

Thank goodness for Mr Google as I’m fast running out of quizzes ……but today’s is all about lunch……10 questions, What Am I? As usual answers in the morning…..

1. I’m stuffed with beef, turnips, potatoes and onions, and was first served in south England, what am I?
2. I’m found in Devon and people often argue about which is spread on me first, what am I?
3. I was invented so John Mantagu wouldn’t get both his hands and cards dirty during a gambling game, what am I?
4. I have a thin layer of fat, and am kinda a big deal in Melton Mowbray, what am I?
5. I’m a bit like a pasty, but I have a savoury filling at one end, and sweet at the other, what am I?
6. I’m a delicacy, found in Colchester, and the Romans loved me, what am I?
7. I famously appeared on Wallace and Gromit, what am I?
8. I’m made from bread, cheese, beer and pickles, and served as a lunch, what am I?
9. Fortnum and Mason claim to have invented me in 1738, I’m round, I divide the nation, what am I?
10. I’m known as a staple in the English diet, to anyone who doesn’t live in England. They think we eat them while drinking afternoon tea out of a teacup. In reality, we don’t, at all. What am I?

Imagine…….Poem revisited

I wrote this for World Alzheimers day 2018….since nothing has changed and we seem no nearer to the elusive cure, I thought it worthwhile repeating on this World Alzheimer’s week….

I sit here as me
The me that was
The confident me
The working me
The dementia free me

My thoughts razor sharp
My head is clear
My mind no longer confused
No longer slow and tired
No more worries for those close and dear

I sit here today and the world understands
No one questions, no one cries
The elusive cure has finally arrived
And so the world is free
Of this tragic disease

I sit here and wake and sadly
It was all a dream…….

Chosen this song simply because of the title and I love it….

 

Being part of the 12 hour Chatathon…….

On the 7th September 2020, Adam Smith hosted the Dementia Research Chatathon LIVE – to share information on the wide variety of research taking place across the world, and to raise money for Alzheimer’s Research UK.

He invited myself and my lovely playmate Chris Roberts and his equally lovely wife, Jayne Goodrick, to open the 12 hour session. You can hear what we said on the link at the bottom…..

I hate watching myself and made the mistake of watching it to remind myself  what we’d spoken about. But the continual twitching of my face and movement of my hands I find so sad. I always used to look so calm in my previous life. The aura of calmness was a trademark, people used to say, but not any more….the intense concentration can be seen on my face. Trying to keep up with the conversation, a sign of my dementia….I can be twitching away, these involuntary movements taking over, then I’ll realise and can stop….only for them to start again a few seconds later 🙈🤷‍♀️

Well, as you’ll see and hear, Adam was worried about filling the 30 minutes we had with him, but once you start us off, you can never shut us up….😂🤣

My daughter, my new hairdresser…..

What do we all miss during this strange time we find ourselves in…..?…Hugs and  touch, were 2 things I miss. I’ve become a hugger and a toucher so the absence of these simple signs of affection has felt very sad…

I began to look like Ginger the pony at one point and was desperate for the hairdressers to open again as were many people.

 

Then a couple of my playmates shaved their heads to raise money, Dory for the Zoomettes and Chris for the Alzheimer’s Society and suddenly an idea started to develop in my little head…..

It was Philly Hare who finally cemented the idea…..we must have been on a Zoom call and I must have remarked how it looked like she’d had her hair cut.  It was then she told me she always cut her and her families hair with clippers. She told me I needed a Number 7 clipper…and what to do….

I’d always liked going to the hairdressers pre Covid simply for the experience of someone washing and cutting my hair, but I’d always hated the false chatter. “Been anywhere nice lately” etc….my hairdresser was lovely but…..

I knew Stuart, my son in law had some clippers as he’d just done his own. When I mentioned it first they tried to put me off, but at some point Gemma must have said she’d give it a go…

The first time we were both very tentative. I didn’t care what it looked like, I just knew that anything would be better than it was! 😂…..it wasn’t perfect, but it was good enough for a first effort and that’s when I decided Gemma would be my new hairdresser…..

We’d had such a laugh at that first attempt. The closeness, the chatter, the kind caring touch made us both feel good. Three weeks later and I went back for more….’a tidy up’ we called it. The same chatter, the same closeness that brought us together. Gemma felt more confident this time and the laughter got louder as I suggested she was becoming a tad over confident 😂….

The last time was when Gemma realised this was her job for life now, but we both enjoyed the time we spent together. I don’t think she thinks of it as a chore…For someone with dementia touch is so important – the hand on the arm, feeling someone care, after all we all know our emotions are heightened with dementia. However, Gemma was definitely a tad blazee the last time as she forgot to check which clipper attachment she was using. I could tell by the sudden shock horror on her face as she casually started to mow my head…….

“Bet that’s a number 2 instead of a 7…” I said jokingly……..”Could well be” she replied as we fell about laughing……after all it’ll soon grow again…….

 

 

 

A Massive Thank You……..

Seems apt that I’m saying thank you the day after World Alzheimer’s Day…..I hope everyone who went the extra mile this month, world Alzheimers month, appreciates, that for some of us, dementia is around all day every day , not just one month or one day…I know it brings it into the headlines each year, but dementia never goes away…..anyway, back to my thank you…….

 We were soooo lucky with the weather in Keswick, my paradise, last week. The week before they had rain rain rain, the day before was strong winds and the day after was dull and cloudy. So the one day we needed to be fine, calm and sunny, the one chance we had to do the walk and it was the one beautiful day we had…..something or someone was certainly on our side….

 It was strange as I felt quite sad and down the first day home. I suppose it was because the challenge was over for another year and we often ask ourselves will we still be capable of another challenge the following year….it’s times like these that bring dementia to the forefront of our minds; when a whole year seems a lifetime away and too far away to think about. I also think it’s going to be a very long strange winter with Covid in our midst so maybe that was somewhere in my mind too.

But enough of the negative. I’m here to say a MASSIVE thank you to all those who felt able to sponsor me from wherever in the world you are…. I set out for £2000 originally but we doubled that, far exceeding my expectation. People were so generous, no matter what their situation. All donations stood out but 2 in particular touched my heart. The first was £2 from someone now out of work due to Covid and who apologised for the small amount. I told them how that was a fortune in their circumstances. The second was from an 85 yr old  from Hawaii and uses some of my ideas in her life….😳…so humbling…..

But to all of you who followed my challenge, thank you and thank you from all my playmates at Minds and Voices. These playmates mean so much to me, as do all my playmates, but these have such a special place in my heart as they were the first group I became part of……even if a group was set up where I live, I would still count Minds and Voices as my group, couldn’t be any other.

All of us back in pre Covid times…

Since Covid we’ve met weekly via Zoom.

Some had never used Zoom before, but such was their desire to stay connected, they found a way and succeeded. Each week though, we have a problem hearing Elaine and Eric as they sound like Daliks and it must be very frustrating for them. So the first thing, I want the money to be used for is to sort their sound out, be it a new device or something else. Elaine appeared in my book, as the person who never spoke when I first joined Minds and Voices, and now we can’t shut her up! 🤣😂 so I’d dearly love her to be heard properly again.

As for the rest….well it was so much more than I’d hoped for, we’ll have to have a think……but I’ll be sure to let you know….🙏. We were down on numbers on this weeks Zoom due to Damian taking a birthday holiday, but Anna held the fort and we had a lovely time, even though she has her eyes closed in the picture!…

My page will close on Saturday and whenI last looked it had reached the dizzying sum of £4954 and it will mean so much to so many, so a final HUGE THANK YOU 🙏

 

 

 

Answers to the Breakfast Foodie Quiz…..

So how did you do on all things breakfast……..? Here’s the questions along with the answers….

1. What does the HP stand for in HP sauce? Houses of Parliament
2. Which breakfast item is proudly made in Burton on Trent? Marmite
3. ‘Like Tea used to be’ refers to which tea? Yorkshire Tea
4. What’s the official difference between an English breakfast, and a Scottish one?
Black pudding vs haggis or hash browns vs oat cakes
5. What is a smoked herring also known as? Kippers
6. What type of animal forms the basis of a kedgeree, be precise? Haddock
7. What type of beans are baked beans? Haricot beans
8. What caused the holes in crumpets? Bubbles in fermentation
9. When it comes to breakfast, what are soldiers? Sliced toast
10. Which is healthier, a croissant or an English muffin? English muffin

Todays quiz is a Foodie Quiz…….all things breakfast

I know it’s World Alzheimer’s Day today, and in the past I’ve done blogs about the change still needed etc etc….after all everyday is dementia day for some of us, so instead of doom and gloom I need routine and a Monday quiz is my routine……

After last weeks challenge was put to bed, it’s back to Monday quizzes….

Todays quiz is a breakfast quiz……..10 questions, answers in the morning as usual…..

1. What does the HP stand for in HP sauce?
2. Which breakfast item is proudly made in Burton on Trent?
3. ‘Like Tea used to be’ refers to which tea?
4. What’s the official difference between an English breakfast, and a Scottish one?
5. What is a smoked herring also known as?
6. What type of animal forms the basis of a kedgeree, be precise?
7. What type of beans are baked beans?
8. What caused the holes in crumpets?
9. When it comes to breakfast, what are soldiers?
10. Which is healthier, a croissant or an English muffin?

A Trundle and a half……Poem

So there’s trundles and there’s trundles

But this weeks broke the mould

Setting off for my 10 mile hike

Some thought I was quite bold

 

But a good cause was pushing me

Forcing my every step

It was of course my playmates

To Minds and Voices , I am in debt

 

My playmates all around the country

All around the world

I owe so much to so many

Because of them my life unfurled….

 

You see, our peers just know

What our lives are really like

It’s so comforting to hear

“Oh I did that!” When dementia strikes

 

So I started off at Appletrees

And headed for the Lake

Past landmarks of sheer beauty

In my paradise of Keswick

To all my playmates who show each other we ‘still can’ – thank you 🙏

You can hear me reading this on Dementia Diaries…..Click on the link below

https://dementiadiaries.org/entry/16079/wendy-reads-a-poem-about-her-enormous-hike-in-support-of-minds-and-voices

 

There could only be one song to go with my walk……