The largest living organism on earth…….

What on earth am I talking about, I can hearing you all thinking…..? Well, what a wonderful trundle I had last week and I didn’t realise this amazing organism existed until I met a lovely person from my village, Pip.

Pip had often liked my photos on the village Facebook page and one day she put up some of her own, of the fungi she’d seen and I was mesmerised by their beauty and wondered why I hadn’t seen them on my trundles. Pip messaged me to ask if I’d like to take a trundle with her for her to reveal this wonderful hidden world to my eyes and I jumped at the chance. What also sold it to me, was the fact that Scooby her Collie Dog would be coming with us 🥰…..😂

Pips mum had Parkinson’s and developed dementia. Her mum was a writer and apparently they came to see a talk I gave about my book and to my surprise Pip produced a lovely photo to prove it

I set off up along the snicket to meet her at the gates. I was a few minutes early so wandered round the churchyard, spying a squirrel watching me, watching him.

I’d never met her before, but as I approach our agreed meeting place , I saw her smiley face and felt immediately comfortable and safe. Her mum died not too long ago and I could see the sadness still naturally there in her eyes even through her smile …and, of course, I immediately fell in love with Scooby 

Pip said we’d start off in the Churchyard…..”I’ve just been round there, and I didn’t see any 😳”……but Pips eyes were tuned into the undergrowth and it only took her a minute to find the first, the second, the third and more …and I’d followed the exact same route, passing them by. Such small individual specimens, camaflaged by the fallen leaves. Some fungi are around all year but Autumn is when most appear, sheltered and hidden by the falling leaves.

It was then I understood I had to look at the surroundings differently, through Pips eyes. We headed along the back lane towards the playing fields, behind which stands a wooden area with amazing ancient trees. It’s often where the children make dens out of branches discarded on the ground

So many different types, 

different shapes

Smokey Bracket

many looking like coral from the sea

Coral Fungi

Pip then stopped at the ‘Mother Tree’….must have been 5-600 years old, but was dying so had the most stunning fungi hugging it’s ancient bark, making it’s demise look beautiful rather than sad….Pip wrote on one particular fungi with the tip of a feather telling me it was called ‘Artist’s Bracket’….the words will eventually fade, for more words to be written..you might be able to make out the faded script of ‘Mi Madre’, where she’d written before…❤️

Artist’s Bracket

All the while Scooby was leading us, turning round occasionally to make sure his herd were following and happy that we threw sticks once in a while for him to chase after..

Some have a milky sap appear from their coral like veins. So many are coral like without the colour but with a individual beauty all of their own

Mild Milk Cap

I began to feel worried about treading on them until Pip told me how the fungi were purely the fruits, like apples on a tree. 

The Mycelium is the real living organism. The fungus has a huge network of roots, called mycellia, that permeate below the ground of the forest….… and the ‘fruits’ or fungi sprout up from the veins that lie beneath the ground.. One was found in America that was 4 square miles, bigger than the Blue Whale, earths largest mammal.

I wish the photo of the Puff balls had come out, along with Dead Mans Finger…but sadly they were too blurred🙄…as Pip gently squeezed the Puff Balls, wisps of smoke, almost like your own breathe on a winters morning, appeared….so unexpected.

Some were rubbery in texture, able to cling to their new found home better

Hairy Curtain Crust

Other, orange trumpets, rising from the leaf mulched ground beneath.

Tawny Funnel…

Scooby led us through the brambles and hanging branches where ‘ear like’ fungi sat perched on Elder

Jelly Ear

And fungi growing on fungi…..

I was beginning to flag a tad as we came to the end of the wood….I’d lost all track of time, having forgotten my phone so was quite astonished and a tad confused as the sun was beginning to set

We’d ambled, chatted and laughed for over 2 hours about her mum, memories, anything and everything. I could feel the sadness in her voice, but a contentness as well as she was doing what she loved most and I was sharing that experience with her. 

Wandering amongst the undergrowth, where I’d never thought to look before, a whole new world appeared right beneath my feet, that I’d never taken much notice of before, not because I didn’t like it, I just hadn’t known it was there. Pip told me sooo many things, facts and information about fungi, trees and nature I never knew before, and even though most were quickly forgotten just to know them for a few fleeting moments was enough.

I suddenly came over totally exhausted and sadly had to say I’d had enough

As we said our goodbyes, the sun just beginning to set, we saw the stunning sight of a white barn owl in full flight, soaring high in the sky, the setting sun’s rays lighting up it’s wings …. …and as Pip said in a piece she posted later:

“’That’s Mum‘ I said. ‘Oh most definitely’ Wendy replied.

Thankyou, thankyou, thankyou Wendy. I felt more useful and happy today than I have in a long time. ❤️”

I’ve always be of the mind, that when someone close dies and they become a memory, that you should scoop up all the nice thoughts and memories and lock them in a treasure box. Every now and then, open the box and the light will shine will all those lovely thoughts and smiles. But never keep it open for good as the memories float around and the mourning continues unabated. Keep it locked, live your life and when the need arises unlock the key to relive them once more. That way you keep your loved one happy and their memories safe as they will always be with you and want to share your highs and lows and they will always show their presence in some way, some people see them others don’t….for me they manifest in my faithful Robins…..

And I trundled home totally exhausted, but utterly content with the adventure I’d just had….

One last photo before my camera too gave up “battery exhausted” just like mine…

My head feeling like a badly tuned radio…..

I wrote this last Thursday as I sat waiting for my partner in writing, Anna, to ping me a Whatsapp to say she was ready to start for the day…..a project underway that will be revealed at a later date….It was 09.30 am and I’d been up as usual at 06.45 but had had an erratic start to the day, my head all over the place

The morning didn’t start off well….I didn’t feel quite right when I got up, having to think extra hard ‘what was next’…my head unclear, thoughts jumping around fighting to be first instead of taking their turn, forming an orderly queue…like an old fashion transistor radio not quite tuned perfectly, many stations competing for my attention 

The pile of washing on the floor must mean I’d decided to wash, so I had my shower first, as I always include the morning towel. Shower over, I picked up the washing, headed downstairs into the conservatory where the washing machine lives and immediately was distracted by the sunrise. I knocked over the tub of washing pearls, scattering like seeds all over the carpet but remember simply thinking how nice they smelt. Will deal with the mess later….I assume I put the liquid and conditioner in the machine as I switched it on, the machine lighting up ready to start and telling me 1hr 02 mins – clicked start and the process began ….

Went upstairs for my camera still distracted by the sky outside, its’ reddy pink glow fading with each minute I was taking and noticed the towel lying there forgotten…thoughts still jumping around erratically in my head, I couldn’t think straight…but I knew I needed to get out for my early morning walk…

I was stumbling around instead of my limbs working in unison, well as unison as they ever are 🙄. They too as erratic as my brain today. I kept telling myself, my morning walk would calm me….

Back downstairs, coat on, orange gloves with hotties inside – must have placed them ready last night. And finally outside into the fresh air, trying to distract the jumble in my head as a mum distracts arguing children….

As I stepped outside, I could feel the calmness of the outside space starting to work it’s magic and I went about my usual walk….. snapping at scenes that caught my eye, the sunrise fading, but still wisps of colour streaked across the sky….

An hour later and I stepped back inside to start off my daily routine, hopefully with a clearer head. Flicked the kettle on and went to take the myriad of morning tablets….a moments hesitation, as the next full compartment said ‘Wednesday’…..I looked at my phone…

‘Thursday 5^th November “ lit up the screen…..I’d forgotten to take my tablets yesterday 🙈…maybe that was the culprit for the jumping thoughts and clumsy body today…but I don’t remember feeling like this before and I’ve certainly forgotten my tablets on many occasions …….another change to surface or maybe it’s just going to simply be one of those discombobulated days….

But when the ping of my phone signalled Anna’s arrival an hour later, it was still a jumbled mess and I didn’t know how much use I’d be. But amazingly…..my fingers were fine….as though detached from my body, wired to a different brain and the jumbled me watched as my fingers typed eloquently, thank goodness. And when Sarah came later, she could see the jumbled chaos in my brain had been transferred to my body and voice. When we walked to the pond to give the ducks an extra treat, my gait felt jumbled too. Consciously having to think how to walk, My body  felt jerky and unwilling….but the ducks were happy at least to see us…

I came back home, after saying goodbye to Sarah, and started jotting my notes down again, my head still a jumble, my fingers clear and concise. I told Anna I needed to close my eyes a while, maybe to let the riot in my head diffuse and calm down…..

An hour later, I opened my eyes, sleep having evaded me, I knew the riot was going to continue, so sat up in bed and began to type something calming about pottering in my garden…although my fingers behaved and produce some calming prose, my head refused to surrender, the fractious armies continuing to do battle. I gave in. 

The evening passed by in a haze and eventually I must have gone to bed. Hopefully sleep will sort me out…..

The next morning I woke and paused before moving. Had the battle ceased inside my head? Or were they just sleeping too….I felt calm, my head felt clear. I’m always saying to others, “If today is a bad day, tomorrow may be better”…..and, thankfully, this time it was….

Dementia is so strange in the way it affects us. A new feeling yesterday which I hope isn’t going to take up residence…….time for my early morning walk…..but more of that tomorrow…

24 Hour Monitoring…..

Following on from my blog some time ago way back in June about the episodes of my body closing down….you can read about it here:

https://whichmeamitoday.wordpress.com/2020/06/16/my-world-just-got-smaller/

I was referred to the wrong department initially but the Neurologst said it might be my heart and referred me to Cardiology.. But she did say, that while waiting for the cardiology appointment,  she would refer me for a 24 hour heart monitor, so at least I will have had that done by the time I see someone….. and that’s what I went to have fitted last Thursday……

I got up when it was still dark and resisted the temptation for an early morning trundle. I could see the sun just starting to rise out of my back window, teasingly red and glowing, but no, I would go for a long walk later with the monitor in situe, after all there was no point in having it on and sitting at home as that would show nothing but idleness. 

I went down to make a cuppa tea and an hour later when I drew my curtains the sun was lighting up the trees outside

Gemma was coming to pick me up at 9 as our appointment was 09.45. It always takes so long to find a parking space and find the department so we were leaving plenty of time for our 15 minute journey. Gemma had txt me an hour earlier to ask if I’d printed the appointment letter as it had come through the “Patient Knows Best” website…🙄…..Luckily I’d thought of that the night before so I was very pleased with myself when I could say ‘yes’..😇

At 9am Gemma arrived, and off we set. We arrived, with loads of time to spare and there were also loads of parking spaces 😳….we’d forgotten about the effect of Covid on outpatient appoinments, most being done by phone now 🙄…..

We went in to find a sign saying, “Please wash your hands”…so duly did and it was the first question the receptionist asked us…and of course we had…It was eerily quiet for an outpatient department, usually greeted by a room full of people, the noise of chatter, but not this time ; seats were well spaced and only one other person in sight. We thought we’d be in for a long wait having arrived early, but a nurse called us after a few minutes. 

“Are you going to ask me lots of questions?” I asked….

“Well I’ll be explaining what to do and when”

So Gemma came in with me as my memory bank.

It was while we were in there that we realised very quickly that we’ve got a long way to go to achieve holistic treatment of a person. You would have thought my notes would have had the fact that I have dementia quite prominently…well if they did, they didn’t read it. She was lovely and friendly, really nice,  but simply rattled off instructions at speed, and then repeated them, I think, as if that would make a difference. I glanced over at Gemma as if to say, “I hope you’re taking all this in”😂…..every so often Gemma would drop a hint saying something like, “that’s ok mum, we can put a reminder for that”……

As she rattled off each section of instructions, I’d nod, but of course as soon as she moved onto the next, the previous was forgotten.🤯🤯

I had to keep a diary of when I ate, slept, woke up, and exercised…mmmm…..”I’ll try”….😳

Anyway we left 15 minutes later, all wired up and ready to go, with Gemma promising to txt me the important bits.

I only had 24 hours to give them information that might help find out what’s wrong. So once Gemma had dropped me back home, I had a cuppa tea, before heading out to do the same walk where the event had happened before, to Folley Lake (see link above) 

It was a breezy but dry day and there were lots of other villagers having a trundle. I came upon the adorable Dulux dog called Henry who is well known around the village and wants everyone to say hello to him 😂😍

Then along the never ending lane I went, views of autumn and ploughed fields all around

I kept making notes in my phone, to add to my diary when I got home, as they’d said to state when I felt breathless etc ….on the flat it’s no problem; the issue starts when there’s a slight incline.

The fields looked so different from the last time I was here. Then they were full of summer wild flowers, crops growing strongly and the trees in full leaf. Now it looked quite barren in comparison, but I can imagine the seeds of next year are busy settling into their home underground and making it snug to survive the forthcoming winter…

Turning left and winding up and down the dirt track, I came upon cows, which I don’t think I’ve ever seen before,  sitting down in a field (or maybe I have 🙄😂)

And by the side of the ploughed field daisies brightened the scene….

As I went over the brow of the hill, I spied tractors in the distance on the potato fields

As I got closer, I could see the farmer and his labourers were gathering all the potatoes from the ground. It was fascinating to watch the speed and amount they unearthed…and then emptied them out into the tractor’s trailer. A real hive of activity. The farmer said it was a shame I didn’t have a bag with me as I could have collected up the missed ones, lying abandoned on top of the furrows of earth…😂🥰

Onward and away from the business of the field and back to silence again as I walked across another field, a perfect pathway trodden down by many a walker between two fields, leading to a wooden area. As I trundled up this long slow incline, I could feel that strange feeling revisiting me again, my body getting weaker, each step that little bit harder. Not far to Folly Lake, thank goodness. I stopped to gain a bit more strength for the final 15 minute walk and tapped out a txt ready to send Gemma, as I knew, no way would I be able to manage the next half of the journey, just like last time. At least she knew I might be txting, unlike the fright I gave her last time..

Thankful that I reached the lake with it’s glorious tall trees

I clicked ‘send’ on the txt before resting on the bench and admiring this lovely view of the Folly that I’ve missed seeing

Fishermen were huddled under large green umbrellas and had wind breaks at one side, protection from the biting wind…

I knew I needed to make my way back up the slope to the gate to be there when Gemma arrived. My body, at this point felt so heavy, as though I was dragging a dead weight, my body draining of energy but not quite as drained as last time, I don’t think. I was concentrating so much on putting one foot in front of the other that I hadn’t noticed  Gemma approach me until she took my arm.

She said I looked pale, drained and simply not really with it. I knew I just needed to sit down and sure enough as I flopped into the car seat, it felt like bliss. We always know when I’m not right as I’m quiet, and my speech didn’t quite feel clear when I did eventually speak. But luckily we’d reached the village by then.

Gemma insisted on coming in and making me a cuppa tea and we knew I was on the mend as I started rabbiting on again about this that and everything…..😂🤣

She sorted out reminders and wrote in my diary before leaving but not before saying:

“Think that’s enough exercise for today and enough information on the monitor for them to look at” 😂

Now we just have to wait for me to reach the top of the Cardiac waiting list to see someone…🙄

P.s The following morning, I wasn’t allowed to shower before taking the monitor back at 8am….notices up, alarms set, but that one routine missing threw me into chaos for the morning 🤯🤯🤯, going round in circles not knowing what to do when…..showing how routine is soooo important….🙄

An anniversary for my blog……..

Today Word Press told me that I started my blog 6 years ago 25^th October 201

Back then for that first blog, I had 25 visitors, mostly family and friends…that amazed me even then. Last week there were 2000 people looking at a random old post about my PIP experience. Numbers don’t matter, really they don’t, they just make me curious sometime as to why a particular one hit so many hearts…

On that first day, my daughter Gemma helped me and helped me for many months after as I learnt how to publish, how to enter a photograph. Her patience is why I am where I am now, no longer reliant on her daily help…..well only when I get in a pickle 😂….and she gently sorts me out and I’m back on my way again…

In 2014 I didn’t even know what a blog meant, let alone written one. I’d only just ventured into the ownership of an ipad and was clumsily navigating my way round what seemed like a technological mystery…..but now it’s my third hand, my partner in writing. Without my ipad I’m lost. It’s enabled me to write so much of this 6 year experience so far and will hopefully be at my side for many more….When diagnosed we only hear what we ‘can’t do‘ and many have this message entrenched In their mind that they forget to try. I learnt all this since dementia, so never give up on yourself, many others will do this for you.

Thank you to all those people who were with me from the start and those who have joined along the way. Your kind comments or questioning are much appreciated. You all really do make me feel as though I’m not alone on this intrepid roller coaster of a journey.

Anyway…..here’s what I wrote for my very first blog 6 years ago and amazingly it still stands now…..

Today is the first day of recording my daily ramblings of living with dementia. Why today? Well, my experiences up until now have always been as though Alzheimer’s was in the future. This week has been a bad week and I’ve realised that Alzheimer’s is now part of (and increasingly encroaching on) my life. So today seems as good a day as any to acknowledge the need to learn to live with it and adapt my life with each challenge it throws at me.

Will anyone read this? Maybe, maybe not. The purpose of venturing into this whole new world is to allow me a way to record what it’s like to live with dementia as the condition takes hold. To write my thoughts, experiences and views. I think both academics and professionals in all fields – cause, cure, care and prevention- could find my ramblings a useful insight into the reality of day to day living with Alzheimer’s. Others may find they too have similar experiences which lead to the acknowledgement that they are not alone. However, if the only purpose it serves is the ability to give me the opportunity to empty my head of thoughts and tangles in order to make room for new thoughts, then it will have been a useful exercise.

A Sudden Decision ……how this world has changed…..

A week ago yesterday, I was enjoying the Monday Morning chatter with Minds and Voices, smiley faces staring back at me, wishing we were all together…..

Once over, I stared at the blank screen, went downstairs and stared at my blank calendar and thought, “how the world has changed”……is this it for the rest of my active life? This time of year is usually mega busy. I’d done all my blogs for the week…Hence why these are a week late….

As you can tell I was in a real downer. I took my cuppa tea upstairs and began my usual stuff on my ipad, flicking here and there. An email came through from a friend telling me her 92 year old mum had managed 2 inland flights from one end of the country to the other, just to see her in the far North West Islands of Scotland. I could feel thoughts beginning to stir in my head…… when suddenly I thought of Keswick and Appletrees…..before I knew it I’d emailed Catherine to see if she’d had any cancellations this week. I was due to go there on 19^th Oct, but this world is changing daily and who knows what the rules might be then…….it might be my last chance for a while…

I carried on with Solitaire, when ‘ping’…….Catherine replied. Yes she had, and it was in fact my Room, Room 6…..from Tuesday, the very next day 🤔🤯🙈🤪😳🥴😁…..all sorts of thought went through my head…..Could I manage to book everything  and sort myself out in the few hours left of the day before setting off in the morning🤔….I didn’t give myself time to think too much or I might have declined. So I watched my fingers type….

“OOOOOoooo fantastic I’ll see you tomorrow” 😳

As I clicked ‘Send’ I felt my stomach doing a summersault, after all I’d not been on a train since February…😳….my head began to explode 🤯 at the thought of working out how to book a ticket….something I’d prided myself on a million times…before the world changed….

I opened the web site, the one I always used and typed in the details …..mmmmm must have forgotten to change the date…..start again…..typed in the detail but this time missed out the return date 🙈…..after several tries I got there, I think….but I was then astonished to find I couldn’t book a seat 😳….Surely they need to know how many people are travelling as seats will be limited and reduced?

…..but now it said, “No reservations on this service”….🤯 I went through the process again, just in case I’d missed something, but with the same result, no seat booking on any part of the journey….AND no code to pick up tickets like I remember doing….🤯……I had to print them instead…..good job I had a printer!…

Gemma would be in a meeting so couldn’t take me to the station so I needed to book a taxi 😳……would my lovely taxi people have survived the lockdown; would the person who knew my voice be at the other end of the phone and remember me? Luckily the number was in my phone and I clicked the phone symbol….I hesitated as the person answered the phone….but I needn’t have worried. She not only remembered me but instantly knew it was my number ringing….”Wendy! how lovely to hear from you”…..”where do you want to go and when?”. I immediately relaxed. At least something had remained the same in this ever changing world…Taxi booked for 09.30 the following day…these are still the only people I’d consider trying to telephone…

It was now 5pm so I had to think about packing…..found my suitcase and some things were already in there from a few weeks ago, so that gave me a start….by 6.30pm I felt I was all ready to go….and feeling a little pleased with myself. I hadn’t given myself time to worry or change my mind. I’d just gone on autopilot…..

The following morning began to feel normal again as I stood by the window waiting for the taxi to arrive. I really didn’t know if I had everything as I locked the front door and headed to the car…But a lovely familiar face greeted me, my taxi driver of old. But now a sign saying face masks to be worn in the car. Once settled and on our way, she told me the sad story of only 9 out of the 40 drivers having been kept on during lockdown just to keep the business existing and even they didn’t have much work. They’re all self employed, so had to wait 3 months without pay for the government to realise they’d been the forgotten workforce.

She told me sad tales of regular customers who now daren’t go out and hadn’t left the house since March 😢….too afraid of this invisible virus…and now too unsteady on their feet to feel comfortable. We reached the station. Gemma had told me to get on at Brough, further down the line to avoid the Beverley /Hull stations. Another change as payment for the taxi was contactless. I was quite relieved really as money is a problem as I’m not often using it any more.

As I watched her drive off, I suddenly felt the silence around me. The once chocca car park, almost deserted. It felt like I’d been dropped at a ghost town….The platform always busy and full of chatter was silent. There was just me….I looked at the board thinking trains might have been cancelled but no, this was the new world. I immediately realised I’d forgotten to look for my glasses which have gone absent without leave since lockdown and my hearing aids, to block out the noise, also not worn since lockdown 🙄

I always looked forward to getting a cuppa Yorkshire tea from the little cabin on the platform. Usually you have to queue, not today. I wasn’t sure he was open, such was the silence, but he was simply sat in the corner of his cabin. For years he’d opened up the tiny cabin to serve hundreds of daily commuters, now, as he saw me looking, he appeared so sad, so lost, so lonely. We chatted for a while and I asked him if this was the new normal. “Afraid so” was his response …”I’ve not seen many regulars for months now, in fact I see very few people each day”.

I chatted a while longer simply to keep him company and bought another cuppa for the train – another change as no refreshments on trains now…The announcement said my train was on it’s way and I bade him farewell and at that point, a couple of walkers appeared on the platform and took my place at his stall…

The Manchester bound train pulled into the station….empty…6 carriages just for me 😳….The guard was safely tucked away in Carriage B…no ticket inspection to take place but that’s where she was if we I needed her. She reeled off all the new rules but far too fast for me to take in.

We past through the usual stations, Selby first then Leeds. Leeds usually a platform heaving with passengers had barely a handful and I decided not to look any more, as it felt so sad and almost spooky.

Instead I opened my ipad and began Solitaire to keep my mind off this deserted journey, occasionally telling myself that it would all be worth it when I reached Paradise.

We pulled into Manchester and I thought this station would be busier…..it’s usually rammed any time of day….but again, this new world has taken it’s toll…

I went to get a cuppa tea for my final train to Penrith, then made my way up to Platform 14, up the escalator….it’s nice that somethings remain the same and the platform has always been that one. Might not always remember the number but I know where it is. Again the waiting area seats are usually full…I was glad they were empty, but looking at the shops and cafes, all deserted, just felt sad.

The board eventuallly told me to go to the platform and I was met by a smiley station person who asked me if I needed any help with my suitcase and it was at that point I remembered I had my Sunflower Lanyard on.

Once again, the train that arrived was quiet and a handful of passengers got on with me. Turned out there were 4 passengers in my carriage. The guard did come to check tickets this time and 2 out of the 4 didn’t have tickets. One on purpose and paid up his penalty fare, the other saying he simply didn’t have enough money and had had a bad day. As the guard left to get the train manager I’d decided I would pay his small amount as he was only going to the next stop. But he then rang his friend and was bragging that he had no intention of paying and would do a runner anyway…..so I didn’t pay his fare and I left him to face whatever was coming….

No piccies of this beautiful stretch of land leading through the Lakes to Penrith as the train had tinted dirty windows. I suppose cleaning the outside is the least of their problems at the mo, back to my solitaire and writing this blog.

I reached Penrith and the familiar site of the ruins lay before me as I waited 10 minutes for the bus with beautiful sunshine and blue skies to greet me..

As soon as I was on there and tootling through the beautiful villages of Penruddock and Threkeld, I felt my heart slow down. It felt as if the world was coming alive again.  The familiar sites of the mountains on all sides giving me a Lakes hug and making me more and more relaxed, the nerves of the ghostly train journeys behind me.

Once in Keswick, I bought my supper and trundled up to Appletrees where Catherine was waiting for me. Up to my room, we chatted away like old friends and then once she left, cuppa tea made, I sat in my usual chair and smiled….it was worth it just for my view

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 🙏

 

 

 

*******Newsflash ****** Breaking News!!!!

So back in March I started my fundraising page with the aim of doing a Tandem Paraglide over Derwentwater in Keswick in April, raising money to keep my support group, Minds and Voices, going……then the world stopped going round…..

Well on Sunday someone donated £50 anonymously on my site which reminded me it existed!🙄…..so to them, a HUGE thank you.

Obviously Covid is going to be with us for the foreseeable future and I’m very conscious that some people have already donated and I havn’t done anything 🙈…so that got me thinking…what can I do that doesn’t involve me being strapped to comeone else…..?

Well…….and this might not sound a challenge to many, but to me it’s enormous

On Monday I’m going to try and walk the 10 miles around Derwentwater…🙈…

I realise this is short notice, but me and Sarah are going to Keswick on Sunday and the idea came to me when I was racking my brain to think if I could do anything while we were there……and who knows what new rules will come in over the next few months…

I’m excited yet also worried about failing, but I’ll have Sarah with me and she can make sure I have breaks regularly. In my previous life I would have walked round the lake in the morning and done 2 more fells in the afternoon, sadly not now so it will be very hard…

I trundle everyday round the village, but the most I go is a couple of miles since an incident that threw my confidence in turmoil, so you can see it really is a challenge for me….

Minds and Voices has been my saviour since early diagnosis and during this lockdown we’ve been meeting on line weekly. It means so much to so many, but our funds are low so that’s why I’m trying to raise as much as I can…….

I’ll take photos at special points along the way to prove I’ve done it, and, of course write a blog….. so now it’s over to you.

I know this isn’t a good time to ask people for money but even £1 will be gratefully accepted and soon mount up…

So please sponsor me if you’re able for this very special group which means so much to all of us…..thank you🙏

https://www.justgiving.com/crowdfunding/wendy-mitchell

P.s I just hope I’ve updated my page and given you the right link as it took me ages to work out what to do 🙈

 

 

Reality or dementia’s deceit ……..?

I woke up the other morning, my heart thumping with confusion…….I typed this straight away…..

I’d gone for a walk which takes me down a footpath alongside the bypass…..only I’d got into a pickle with the turning and found myself heading down the embankment down onto the bypass. I remember thinking how it’s not usually a steep drop, but once I’d started, momentum just took me to the bottom….…..looking back up I knew I wouldn’t be able to climb back up it….

I looked this way and that and felt the speed of the cars rushing past me, so close the breeze was catching my breathe and the noise unbearable….I had no choice but to walk. Surely I would come to an exit, a slip road or a roundabout…..then a car coming towards me began to slow down, the familiar blue lights flashing on top….it was the police…..

I told them how I’d got in a pickle with the turning and ended up down on the road not quite sure how to get back to safety…

They wanted to take me back to the spot to see the gap that shouldn’t have existed, but I felt so guilty. They would have to do a massive detour and I didn’t want to waste their time. But they were kindly persuasive, explaining how far I’d have to walk to find an exit. We’re they real police, suddenly doubting their uniform, but what choice did I have?

We went the long detour, them keeping me in conversation, me reluctant to reveal my dementia, until we finally arrived back at the site of my misdemeanour. They could see the damage to the barrier that had allowed me through and I showed them the footpath a few yards away just in case they had doubts of their own…

A man then appeared, saying hello to me by name, from the village apparently and knew me well 😳. He took one of the policemen to one side while the other chatted to me, but I heard loud and clear when the man was saying “she has dementia, can get confused sometimes’…and suddenly felt trapped, guilty as charged…

As he waved goodbye the 2 policemen said they’d better take me home, but I hadn’t been for my trundle yet, I protested.

“We’d feel better if we took you home today, always time tomorrow for another walk”

I began to panic because I didn’t want them to know I lived alone. What would they think and do then? Would they report me to the authorities, raise their concerns with social services? My head in a spin, my mouth dry, I felt trapped in a corner desperately trying to think of a story….

As we crossed the traffic lights into the village, they asked my address. Amazingly my brain cooperated and I said my daughters address just hoping they’d be there. As we pulled up outside, an anxious Stuart came to the door, followed by Gemma. Before they could say anything I simply said,

“ I got in a pickle on my trundle and the police brought me home. I’ll explain in a min..”

Luckily the police didn’t ask any questions but thankfully left me there and went on their way, hopefully fighting crime and forgetting about me….

That’s when I opened my eyes and couldn’t think whether all that had really happened. I looked around. I was in my own bed. But the images, the feelings were so real, listening to my heart thumping, my head whirring. I lay there trying to think if it had been yesterday when the trauma occurred. I really didn’t know.
I was going to text my daughter to check but then didn’t want to worry her if it hadn’t. If it was real, the topic would be raised again for sure…..wouldn’t it?

Reality or a dream….it was so clear, so real….sometimes with dementia it’s hard to decipher…..and I’m still not sure…….

The PIP Verdict arrives through my letterbox……..

Not sure if you remember my PIP ordeal….I was awarded PIP 5 years ago, a few months after being diagnosed, then it was taken away from me 1 year later and the process of appealing was soul destroying so I let them win……here’s the detail from back then in 2016…

https://whichmeamitoday.wordpress.com/2016/08/11/pip-process-is-broken/

Well in the last few months I decided it was time to make a stand again and reapply. It was really the principle I was fighting for. I had sooo much support on line, some from people I’d never met, for which I was so grateful.

The first appointment, after getting myself into a state, was a ‘no show’ on their behalf, which was, once again, very stressful…..

Here’s what happened on that occasion……

https://whichmeamitoday.wordpress.com/2020/02/18/the-trauma-of-the-pip-process-once-more/

…..but my daughter rang and they immediately gave her another appointment a month later…..

Here’s what happened when someone did arrive…..

https://whichmeamitoday.wordpress.com/2020/03/11/the-next-pip-trauma-wait-arrives/

It felt a lot more positive but I knew from past experience that nothing should be taken for granted as they appear to be a law unto themselves when decisions are made….

 Bizarrely, the day I saw the postie coming up my path with a brown envelope in his hand  I clapped him through the window not knowing what he’ was delivering, but just to thank him for continuing to work…..when I saw what it was, my heart thumped again and for a few seconds just held it in my hands and stared at it…..before opening it, heart In my mouth…..and ready for another appeal, another battle……

I read it and reread it…..and this time, thankfully, they awarded me both payments without argument …just as it should be….”Feeling relieved” doesn’t express the intensity of the emotion I felt…

Makes you wonder, whether the person who denied me last time stating, I was ‘getting better’ is still employed by them….😔🤔….

It now says they won’t contact me again until 2030 so at least it’s all over, unless governments change the rules again….I can’t tell you what a relief it is to gain acknowledgment of the effect of my dementia…….and, people with dementia, once awarded, should never have to go through it again….but then that’s another battle for another time…..

  

 

The next PIP trauma wait arrives…..

Yesterday was the date of the rearranged PIP (Personal Independence Payment) visit…..last month they were due to appear  but failed to turn up…..you can read about it here if you missed that one…

https://whichmeamitoday.wordpress.com/2020/02/18/the-trauma-of-the-pip-process-once-more/

Yesterday the letter said they were due to arrive between 09.00 – 11.00 and I sat waiting for Gemma to arrive. The nerves had been rising inside for days….that feeling of worry, that whittling and gnawing away in my head…….knowing what was to come…..or not knowing….

The early morning was a roller coaster fuelled hour as I opened my inbox to find a wonderful email from a company that I’m hoping will help me with my next fund raising adventure. My support group at York Minds and Voices, is running out of funds, so this year I’ve decided to raise money for them. I looked through the piccies of my sky dive last year and was transported back to that wonderful day….floating in the sky…..and for a moment it lifted my spirits…

They agreed to my taking part in the adventure….just need to find the right method to raise money now so WATCH THIS SPACE!!

After reading that, I closed my iPad and the worry returned, Gemma arrived, and we sat waiting for the Assessor to arrive…….

They were due between 9-11 and amazingly arrived at 9am 😳……my stomach churned as Gemma let her in……

We sat there for 90 minutes, talking about all the things I can’t do, about my vulnerability, my failures…obviously I wasn’t typing so this is simply what sprang to mind as she left…..

She was very thorough…appeared very kind. I was very vague, as usual, as I find it hard to remember the bad stuff, trying continually to block that from my mind every day. But luckily Gemma didn’t, and filled in all the gaps, prompting me where necessary….guiding me through this maize of conversation that left us both exhausted but glad it was over…..she did give us one helpful suggestion – for one of my daughters to become ‘An Appointee’. I’d never heard of that term before, but apparently it will make some things easier. We’ll have a conversation and do some digging around. How are we suppose to know these things if no one tells us in the first place…? But at least she did..

As the woman was leaving, she apparently said to Gemma:

“People like your mum shouldn’t have to go through this, but sadly it’s the system…”

Well at least she had a heart and saw that…..but it’s not her that makes the decision and someone else could look at her report and see things entirely differently. We will just have to wait and see….

As she disappeared and left me and Gemma on our own, we hugged and I cried…..simply the relief of it being over leaking out through my eyes………a system which tries to catch out the few and fails to support those with a genuine need…..