Have a Laugh. Premonition?: I penned this in mid... - PMRGCAuk

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Have a Laugh. Premonition?

cycli profile image
65 Replies

I penned this in mid 2020 after my last trip to Almeria(S.Spain) staying at a friends house in March after 2 weeks cycling through the mountains. I took the very last flight back before lockdown and during the year gradually began to feel worse. In October I was diagnosed with full blown PE from which I recovered ok. but in June of 2020 I wrote this.

I’m 69 and approaching my three score years and ten biblical lifespan.

Up until recently I’ve never given any thought to making concessions in anything I want to do physically. I don’t know about the way others see things but I have always just continued to plan ahead and then work towards achieving the goal. I’m a project motivated person and there is always another idea to get involved with. I have no idea what I would do without such an outlook. I have definitely noticed a slowing up and slight lessening of drive. That’s probably a good thing but it’s made me more reflective and conscious of an ageing bias to what is achievable.

It has become common for people to say one should live in and for the present moment. That’s all well and good but without a plan on where one is going and what one wants to achieve it isn’t the sort of philosophy that makes any progress.

More importantly it seems to me that one has a duty to make something of the abilities and talents one is born with and skills developed during our lifetime. However slight one should seek to make a difference trying every day to move the game on. What is the point in our lives without such. There is no value in getting old for its own sake. Unless one is contributing to the betterment of something then I can’t see the point. One is just passing time.

How ironic. Makes me laugh to read now. It took another year to work it out.

So now it is the recovery research project.

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cycli profile image
cycli
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65 Replies
Artandpoetry profile image
Artandpoetry

I so relate to everything you are saying. My projects have always been important to me and have kept me motivated and interested. I look forward to hearing about your current one. It would be amazing if it led to some sort of breakthrough that would help others. Keep going and good luck👍😀

cycli profile image
cycli in reply to Artandpoetry

That is our hope. Thank you

SheffieldJane profile image
SheffieldJane

You have come on miles since those days. I think you are a work in progress and you will triumph in the end. Good luck with the recovery research project and please share.

HeronNS profile image
HeronNS in reply to SheffieldJane

Aren't we all "works in progress"? :D

cycli profile image
cycli in reply to HeronNS

Yes. If someone gives me a headstone I want it to say HAS potential. Still doing something if only feeding the worms.

HeronNS profile image
HeronNS in reply to cycli

I keep meaning to look into the possibility of a "green" burial so that can literally be true. We are all made of atoms, originating in stars, which have been recycled countless times.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

My hubby is already in a woodland burial ground feeding worms and helping ‘his’ tree to grow…. in the fullness of time I shall join him….in the meanwhile I just visit and chat to him in a very peaceful place…and sit and stare.

HeronNS profile image
HeronNS in reply to DorsetLady

🤗

SheffieldJane profile image
SheffieldJane in reply to DorsetLady

we are doing that too. It happens to be near Riddings where my mum grew up. I want a Rowan tree.

cycli profile image
cycli in reply to SheffieldJane

The mountain ash. Lovely tree with useful berries which feed the birds. They grow well up here in Durham on our farm. It won't ever become ancient as it is relatively short lived. Sorbus Torminalis or Wild Service Tree commonly called the chequers tree for the formed pattern of the bark has larger berries and they can be fermented into an alcoholic drink. Introduced by the Romans. Probably why so many pubs are called the Chequers. Either would be a nice choice.

in reply to DorsetLady

I’m sure he listens when you visit and enjoys your company 💕

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

Well if he listens to me that’ll be a nice change..not sure he did when he was here…

But I think to think he does - hope so, cos I’m usually bringing him up to date with family…but then he probably knows that anyway…😊

in reply to HeronNS

my uncle is buried in designated woodland, we pushed the cardboard coffin through the woods wearing wellies and the family lowered him into a double depth grave where his wife will also be buried in due course. The ashes of my little brother who died in tragic circumstances are scattered in a green field in the countryside. Recently we lost my Dad, step Dad and my ex husband, it’s been emotionally overwhelming. Both were eco/green cremations with plans to spread the ashes where my brothers rest and my sons are are still planning their Dads.

SheffieldJane profile image
SheffieldJane in reply to HeronNS

Indeed we are!

cycli profile image
cycli in reply to SheffieldJane

Thank you and will do.

Bcol profile image
Bcol in reply to cycli

I think both Rex and Meg would be very approving of us having our own tree when the time comes.

123-go profile image
123-go in reply to Bcol

😁😉

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bcol

Sure they would ……😊

cycli profile image
cycli in reply to Bcol

Had a very vivid dream of taking Rex out for a walk through the woods. Made me happy and sad in equal measure. Even when recovered, if ever, i doubt I can ever replace him.

Bcol profile image
Bcol in reply to cycli

Morning, I can completely go with those sentiments. I was talking to my OH a few days ago and as much as I'm sure Meg would want me to give another rescue dog the sort of life she had, at this time, I don't think I can. I think of of her every day, and talk to her every day when out with Joey. I'm sure people here wil probably think I'm as nutty as a fruit cake but that is the sort of influence and impact she had on our/my life. Even Joey our ??poodle type cross is still confused, he was so used to having his life led/organised by her and he now has to make his own decisions which he finds difficult.Take care and I hope, medical wise, things are improving. Did you manage to get all the logs chopped? Think the word "snow" was mentioned in this mornings weather forecast!

cycli profile image
cycli in reply to Bcol

No snow yet fingers crossed. Logs in and more planned. Still have 6 trees down in storms so plenty to work on. still struggling with a bit of pain but getting by. Keep well

cycli profile image
cycli in reply to Bcol

Don't remember if I've posted this before. Picture of Rex my sister painted for me.

Rex
Bcol profile image
Bcol in reply to cycli

Beautiful. 🙂

cycli profile image
cycli in reply to Bcol

Truly. He was and my sister is a talented artist.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

This maybe describes your current project - and nothing wrong with that -

Leisure

William Henry Davies

What is this life if, full of care, We have no time to stand and stare?-

No time to stand beneath the boughs And stare as long as sheep or cows:

No time to see, when woods we pass, Where squirrels hide their nuts in grass:

No time to see, in broad daylight, Streams full of stars, like skies at night:

No time to turn at Beauty’s glance, And watch her feet, how they can dance:

No time to wait till her mouth can Enrich that smile her eyes began?

A poor life this if, full of care, We have no time to stand and stare.

Kendrew profile image
Kendrew in reply to DorsetLady

One of my favourite poems and I read it at my dad's funeral as he absolutely loved it too. It brought back some very fond memories of happy times.

cycli profile image
cycli in reply to DorsetLady

I love that and it serves to remind us that appreciation of the world around us is a vital part of life. Trust me I wouldn't live where and I do if I hadn't this inclination. However, the research project is something I am compelled to push. Yin and Yang. Balance.

tempusfugi profile image
tempusfugi in reply to DorsetLady

I recognise the poem, too. Tried to read it out loud (to myself) but became emotional AGAIN. Nevertheless, thank you DL...

HeronNS profile image
HeronNS

Gone through a bit of reassessment myself since diagnosis of PMR in 2015. Always tried to maintain the level of accomplishment I'd managed in the past. In other words, always tried to be at the top of whatever figurative mountain I was confronting at the time. It's become easier to slide over the past eight years, but I still try and think it's important to. Now, as you know, I had a couple of knee injuries at the beginning of the pandemic and for a year I was not able to exercise as previously used to. Since then through my own hard work and listening to good advice I'm pretty much recovered. BUT I simply no longer have the stamina to walk as far and as fast as I used to, and this has become true in nearly every aspect of my life. But still I try. When my bad shoulder prevented me from doing up a clasp at the back I did it up at the front. Someone said they'd always done that, since being a teenager and don't think they understood that for me if I didn't work to regain my previous flexibility, that would be another small slip on the inevitable downward slope. Just a minor thing in the big picture, but those little things all add up. "Do not go gentle into that good night...."

However I've always been in some ways a contemplative sort of person so maybe it's good to finally have permission to simply "stand and stare"!

jayemmemm profile image
jayemmemm in reply to HeronNS

I'm afraid I would have to 'sit and stare' these days as walking more tha a few yards is out of the question. But anything is better than sitting and staring so I try to achieve at least one task each day, however simple it might be.

Your comment adout being unable to do up a clasp 'at the back' reminds me of a limerick I composed when my late wife broke her arm. I hope I don't get into trouble for sharing it:-

When my darling wife broke her humerus

Her problems were painful and numerus

A maternity bra

Proved better by far

But she needed a hand with her blumerus.

Take care!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to jayemmemm

There is nothing wrong with sitting and staring -doesn’t mean your brain can’t still function..

Perhaps you could pen more limericks….😊

HeronNS profile image
HeronNS in reply to jayemmemm

Love it!

Quite fortuitously for New Years Resolutions 2020 I made a list of pleasureable tasks to do every day. Turned out to be a godsend when the pandemic and initial months of lockdown hit. I've continued ever since, although the Tai Chi took a bit of a vacation when I dealt with some knee injuries 2020-2021. I draw a picture , play the piano, do tai chi, read aloud and sing for specified times each day in the interests of not losing my voice for lack of use (actually started doing that when I retired a few years ago) and spend quite a lot of time on Duolingo. For a while I was doing needlepoint (tapestry) but finally finished the project started in 1993!

jayemmemm profile image
jayemmemm in reply to HeronNS

Thanks, HeronNS. My goodness, you are much more active than I could be though I'm approaching 90, so perhaps it's to be expected. I draw and paint, print photographs, write very short stories (exactly 50 words), proofread articles for a magazine, cook, and mend my own clothes. My late wife taught me the last two activities and I'm forever grateful to her for that. But threading a needle is a huge obstacle! Take care.

HeronNS profile image
HeronNS in reply to jayemmemm

It's a long list but xcept for the Duolingo which is taking longer now they changed the program they are all quite brief moments in my day. I guess they are all now as routine as a daily walk, so perhaps I'll need to start adding more things. I give up stupid computer games for Lent so feel at a bit of a loose end sometimes. It would be nice to get back into ordinary social interactions but it simply isn't safe. I don't think any of my friends are are covid-wary as I am. Every other member of my local family has had it. :(

Maisie1958 profile image
Maisie1958

”Man plans, God laughs”

Wishing you all the best, I have enjoyed reading your posts. Good luck to us all 😊 We need to keep going forwards and always do what we love 😊

Pony and lovely stubble field. Combined age 86, ponio more sassy than me
KASHMIRI1 profile image
KASHMIRI1 in reply to Maisie1958

Just love your picture of bay ears. It takes me back to a time when l looked out over grey ears.

Maisie1958 profile image
Maisie1958 in reply to KASHMIRI1

Hi  KASHMIRI1 - definitely the best view in the world looking between those horsey ears, isn’t it 🥰

KASHMIRI1 profile image
KASHMIRI1 in reply to Maisie1958

Nothing like it. 😊🏇

cycli profile image
cycli in reply to Maisie1958

Such a lovely scene. Joy in doing what we love. Taking off a shaving of wood to reveal the beautiful colour, texture, pattern and smell with a perfectly sharpened plane gives me such pleasure.

Poshdog profile image
Poshdog

Oh cycli, I have become a Potter. Too much caring for others - mother is 101 and I am an only child, son is 45 and autistic so cannot live independently and partner has heart failure after two unsuccessful open heart ops for damage due to endocarditis - so now I sit with filthy hands trying to make something beautiful out of the earth. So peaceful, I can barely believe it. So hope you find your recovery research project, do let us know xx

cycli profile image
cycli in reply to Poshdog

My mother was a wonderful potter. She made all her own ash glazes. Beautiful colours. Researched all the different clays in England and found which worked best. One of her last pieces was a small porcelain representation of a broken eggshell representing new life. When the then Archbishop of Canterbury visited her in St Josephs Hospice he noticed this at her bedside and they talked about it. He made the visit and her piece the theme of his annual address that year. I still have the Sunday Times cutting. We still use her wonderful pottery everyday.

Poshdog profile image
Poshdog in reply to cycli

How very inspiring to hear that. I've started rather late in life but really love it. Can you send any photos? Not sure if allowed on site but perhaps a PM? Not sure how to do that either! She left you a true gift of herself - very moving xx

cycli profile image
cycli in reply to Poshdog

She did too. Mature student when we were grown up. she gave the piece to him that day and died 2 days later at 57.

Poshdog profile image
Poshdog in reply to cycli

So young, but quite a legacy xx

PMRpro profile image
PMRproAmbassador in reply to Poshdog

Afraid they don't work on PMs - don't ask me why. But photos can be attached to replies as long as there aren't too many.

powerwalk profile image
powerwalk

I think whatever keeps us going! Here's to the Recovery Research Project!

Miserere profile image
Miserere

I could have written this ... and I still have projects - they've just changed a little. Well done you!

cycli profile image
cycli in reply to Miserere

It's nice when we communicate and something we impart resonates with others. I don't write to please others but to try and express honestly what I am feeling and if that helps others or gets a laugh then that means I maybe learning to understand others better. Sometimes I put my foot in it, don't we all!!! One thing I have never been able to do is hate. I can't hold that sort of emotion long enough to be bothered.

Sharitone profile image
Sharitone

What I have learned from this incapacitating disease - at least almost learned - is that our value does not depend on what we do.

cycli profile image
cycli in reply to Sharitone

I think I understand what you mean. It's in how we manage and face what we are given beyond our control that defines us. However we still "do" things. We still have drive and ambitions. We may not be able to "do" what we did bit that doesn't mean we can't progress in something. I've never thought of myself in terms of value, presumably, in comparison to others but in how good I could be in what I did. I was accepted within my peer group as a very good designer maker and exhibited alongside some of the "best" and well known at that time. When I made corporate boardrooms my work was different to the norm and I was a preferred supplier to some major blue chip companies. As a cyclist I started my own club because I didn't like most of the existing ones who didn't share my ethos of inclusiveness and support in a way I wanted to ride. Now that I am incapacitated by this condition I am seeking a way to understand and recover from it when able through research and practice, Not only for myself but for many who can't see a way forward. Hope is a precious thing but I have never been dependent on faith but making it happen by trying to think my way towards the goal. So if we define value as an outcome then for me it does depend on what I do.

Sharitone profile image
Sharitone in reply to cycli

Yes, I get it, and of course, our value does depend on the worthiness of what we do or are. I just meant that when we are not able to be very active, then we can still be just as valuable in al sorts of ways, like the way we respond to other people. I'm just trying to persuade myself here! I really don't like not being able to do my bit!

jinasc profile image
jinasc in reply to Sharitone

You wrote "I really don't like not being able to do my bit! " Neither did I and many others who have an auto-immune illness.

There are still other 'bits', just different. Every time you respond to a post you are helping. You don't necessarily know how you are helping - but you do.

Sharitone profile image
Sharitone in reply to jinasc

Thank you.🙂 We should all give ourselves a pat on the back!

cycli profile image
cycli in reply to Sharitone

It really hurts doesn't it. Just got back from the weeks shopping and collecting my weight in pills!!! I'm now completely whacked. what a journey eh?

cycli profile image
cycli

not really much improvement. Plodding on and hoping it will just decide to give me a break.

cycli profile image
cycli

Well just thought I'd update the thread. I seem to be stuck at a stage of limiting back pain and no energy. Can't stand for long and do stuff. Takes the pleasure out of preparing a meal. I seem to be at a stage that I've read others have got to where you talk of deathly fatigue. Hard to motivate oneself when feeling this way. Certainly a voyage of discovery.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to cycli

Thanks for update...hope you soon feel better - what dose are you at now?

cycli profile image
cycli

20mg DL. all other indicators normal from bloods so maybe drop 2mg to 18. Need to sort this back issue though.

PMRpro profile image
PMRproAmbassador in reply to cycli

It is presumably muscular?

cycli profile image
cycli in reply to PMRpro

I think so. I am convinced it has something to do with core muscles as when I tense what's left of them it helps relieve the worst. pressure point massage while painful works to release the worst but it skews my stance. My appetite is half what it used to be as I don't do anything much at present.

PMRpro profile image
PMRproAmbassador in reply to cycli

You need my pain clinic lady!!!

cycli profile image
cycli in reply to PMRpro

would you could!! I'll just have to keep trying. I'll get there eventually

cycli profile image
cycli

5 months on and I am sorry to say the back issue is still there preventing any sustained effort to do much standing up. It is very frustrating as I am sure most of you know already. We all share some issue or other that refuses to budge however patient or persistent we are. I think it is improving slowly and I am now down to 11mg of pred from tomorrow. Rather weak these days which I put down firstly to muscle waste from pred and the muscle function down to PMR. They simply don't work as well or respond to ones normal self correcting instructions. Their response seems sleepy and unreliable. I'm still hopeful that with continuing reduction of pred in a controlled way I can get the dose low enough to start the process of rebuilding lost muscle and strength but it clearly is going to be a hard fight back.

cycli profile image
cycli

A friend came round yesterday to help with the fallen trees. Managed to get both my chain saws working and managed to produce some firewood. A couple of the oak trees have good trunks with pippy grain potential. Decorative whirls caused by bunched twiggy growth. They are also brown oak, caused through chemical reaction to beefsteak fungus. Hope to plank some for making into furniture when I am recovered. Can't manage much at a time but still doing something to make me feel less useless.

cycli profile image
cycli

Well it's another 4 months on and still with this back issue. Managing to do some short effort work but limited. can't believe it's 9 months duration, and still no end in sight. It's a pretty miserable day outside so rather glad i don't have any call to venture out.

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