Grip on life -: I'm losing it!! My get up and go... - PMRGCAuk

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Grip on life -

Constance13 profile image
135 Replies

I'm losing it!! My get up and go has got up and gone.

My tolerance of pain is disappearing. My smiles are getting weaker. My humour is missing (poor old sod)!

PMR playing up - RA pain 7/8 till about 1 pm. Coping is getting difficult.

Give me a kick someone. I need telling off!👵🏻

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Constance13 profile image
Constance13
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135 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Send you a virtual hug instead - don’t do kicks- well not unless ABSOLUTELY necessary 🌸

SheffieldJane profile image
SheffieldJane

Promise me you’ll always remember, you’re braver than you believe, stronger than you seem and smarter than you think. Winnie the Poo 🌼🌸🌺

icu2 profile image
icu2 in reply to SheffieldJane

love Winnie. if memory serves me…named after the city of Winnipeg where a soldier had purchased a bear cub and transported it back to England…ended up in the London zoo…and then came Milne…

Nextoneplease profile image
Nextoneplease

Chin up Constance 😊 You can do it! Take care of yourself xx

PMRpro profile image
PMRproAmbassador

Given the weather you've had recently - I'm not surprised!! If it weren't for your weather - I'd drive up for a visit. Alle Wetter said yesterday it would be bad for rheuma today ...

Big hugs xxxx

Constance13 profile image
Constance13 in reply to PMRpro

The weather has been ridiculous lately. Never known a winter like it. The sun is supposed to come out next week so I am hopeful my mood/disability will improve. It’s not like me to be so down. This too will pass!

PMRpro profile image
PMRproAmbassador in reply to Constance13

Must be a view of some buds in the gardens opposite your windows??

About all I have at present is a building site - a new all-weather footy pitch!!! Just hope they don't find a Roman remains that the archeologists have to excavate before they can finish the darn thing!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

All weather footy pitch…oh deep joy! Now, if it were rugby I might visit…😉

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Deep joy indeed. At least it is most likely to be used for the little bunnies practising and less for the matches - that is a bit further away and has the stand the other side. Italian footy fans are very NOISY! Luckily there aren't many ;) Keeps 'em off the streets I suppose - bit close to my street though.

Pixix profile image
Pixix in reply to DorsetLady

Oh, yes!! Me, too!

Constance13 profile image
Constance13 in reply to PMRpro

Things growing very slowly this year. Some snowdrops. Waiting for dafs to bloom.A footy pitch would horrify me! No-one could be less interested in sport than David and me!

PMRpro profile image
PMRproAmbassador in reply to Constance13

I love sport - just detest footy!!! As DL said, now if it were a RUGBY pitch ...

The positive is, it won't have houses built on it ...

in reply to Constance13

My first hyacinth popped up today , think of the scent to cheer you up 😉

borednow profile image
borednow in reply to Constance13

Constance I am so with you on this. I'm blaming this awful weather BUT today it is absolutely beautiful and I am feeling a bit giddy to be honest. Trying my best to pass it on to you!! Onwards and upwards and all that ........... Sue

Constance13 profile image
Constance13 in reply to borednow

We’re a tough lot really. We’ll get there - with the help of our good friends on this forum.

autumnlass profile image
autumnlass

🤗🤗🤗🤗xxx

123-go profile image
123-go

'Constance': derived from the Latin for steadfast and resolute.Keep going, Constance, and remember to spoil yourself a little. 😉💐

jinasc profile image
jinasc

Constance, just to cheer you up - it cheers me up when I look out of the bedroom window and although we have had 6 storms since early December up they come in January. Planted in 1988 by my Mam. Onwards and Upwards - but not to soon 'upwards'. 😈 A large 🥃 glass of what you like is called for.............xxxx

Berengia
Constance13 profile image
Constance13 in reply to jinasc

Thanks Jinasc. Will take your advice later. 🥃 Cheers!

tangocharlie profile image
tangocharlie

Keep going Constance .... at a steady pace of course. It is tough living with a chronic illness which is why this group is here for us to support each other on days like this. I find when I'm having down days, things like just writing down how I'm feeling in a journal helps, so does doing a gratitude diary - list 5 things you're grateful for, getting out in nature and seeing the spring flowers coming out, phoning a friend for a good long chat, sending a card or note to someone .... doing something FUN a nice cup of tea in a proper china cup ... getting stuck into something or a book .... whatever puts the smile back on your face. xx

Constance13 profile image
Constance13 in reply to tangocharlie

Thanks tc. ⭐️ Books are my weakness. Luckily I have dozens downloaded and replenish often.

tangocharlie profile image
tangocharlie in reply to Constance13

Books aren't a weakness they're a strength! Get stuck into a good one! x

HeronNS profile image
HeronNS in reply to Constance13

Tangocharlie is right. One day I spent my allowance on books for the very first time and my father said "Money spent on books is never wasted" which gave me permission to accumulate far too many books for the rest of my life 😂📚📔. Downsizing has been painful. Those first two books? Paperback copies of The Diary of Anne Frank and a dictionary! Wise little pre-teen wasn't I?

Constance13 profile image
Constance13 in reply to HeronNS

That’s the great thing about downloading eBooks. I’ve never counted how many I have - I suppose I should.Before I bought the first few I always said “not for me - nothing is better than a ‘real’ book in your hands”. You can’t take dozens of books away with you though, can you? As we used to go to England twice a year for about 10 weeks each time my ‘love’ of eBooks was born.

HeronNS profile image
HeronNS in reply to Constance13

I used e-books when I was laid up with the broken leg. Borrowed from the library and also off Project Gutenberg. I really resent having to pay for an electronic novel although I don't mind the occasional non-fiction more reference type of book in electronic form. You can't lend an e-book. I have also used e-book when travelling. I like a book which is easy to thumb through, to check back to remind yourself of something, etc. The advantage of an e-book for me, a very untidy reader, is it stops me from reading the end ahead of time. I read Middlemarch when I was recovering from broken leg, having remembered that I'd rather liked it when taking a class in that time period, unlike nearly everything else. I had to read it in proper order and by the end decided it was probably the best novel I have ever read.

The codex is a brilliant invention. An e-book is a kind of return to the scroll!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Since GCA, I use audio book all the time - free via library - can even access them when in NZ!

HeronNS profile image
HeronNS in reply to DorsetLady

Yes, we have that service as well. My aunt, living in the UK, who suffered glaucoma damage in her last years, used to listen to audio books. A lot more convenient than the old tape decks we used to have, although even those were a miracle in their day. Eventually I suppose we'll all just have tiny chips implanted and will be able to access anything anywhere.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Our own chips? very likely -but not in our lifetime….😉

HeronNS profile image
HeronNS in reply to DorsetLady

Hope not!

Sharitone profile image
Sharitone in reply to HeronNS

Then have you tried 'A Suitable Boy'? One of the longest books in the English language and it lasted me three months. But not a cardboard character in sight!

HeronNS profile image
HeronNS in reply to Sharitone

When I finished Middlemarch my daughter suggested The Goldfinch and I must say it was a good follow up. Recently tried watching the dramatization of A Suitable Boy, but it confllicted with something else we were following and the PVR let us down so I missed a key episode and gave up. Perhaps reading the story would be more productive. I'm really more into creative non-fiction. Examples: The Zookeepers Wife (Diane Akerman), Not On My Watch (Alexandra Morton), Finding the Mother Tree (Suzanne Simard). Currently reading The Old Ways (Robert MacFarlane) which I have to keep borrowing from the library because it's not exactly a rapid read! But it makes me feel I'm traversing the world on foot, which is lovely, given my time and place in life....

sandydame profile image
sandydame in reply to Constance13

Constance I replied to 2013 Mayo meant for you but also for everyone Hope you see it It is about daffodils! Ah! I make these mistakes. Thankful this is an understanding group.

Sorop profile image
Sorop in reply to Constance13

When I lost my husband my sister sent me a diary and called it 'Walk on the sunny side of the street' and told me to write all the nice things that I had seen in the garden or if someone smiled at me or family called. I kept it going for a year and it helped. Its amazing how many things around us we take for granted and don't appreciate how little things can give us a little boost. Be kind to yourself. xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sorop

Very true…..

Constance13 profile image
Constance13 in reply to Sorop

I DO appreciate life - I really do. Except for an unhappy childhood I have had an extraordinarily good life - thanks to my husband. Life is good- I know and appreciate that. A moan every now and again helps too!🤪

Hunter134 profile image
Hunter134 in reply to Constance13

We have that in common of a hard childhood and a great husband for our grown up life!I feel for you as iam fighting a bad flare and in so much pain.If course it took hold with no Dr to talk to.This disease is relentless and it gets me down as well.I guess we have to hope for better days💕My thoughts are with you.

Constance13 profile image
Constance13 in reply to Hunter134

Mine wasn’t “hard” just very disturbing.

Hunter134 profile image
Hunter134 in reply to Constance13

Wrong choice of words.Mine was unhappy too!

HeronNS profile image
HeronNS in reply to Constance13

Couldn't agree more!

2013mayo profile image
2013mayo

Hi Constance, Wow do I know the feeling, I think we all get good days and bad days.

Things will improve I promise.

Sending you a big hug.

😍🌈

sandydame profile image
sandydame in reply to 2013mayo

Daffodils! Someone said daffodils. My so favorite flower! Coming up in little green shoots right through the last bit of snow and thaw! I have my own saying about daffodils. When you seen a full bloom daffodil, bright yellow, sunny, that is God smiling at You . Constance you are like that little green shoot pushing up through the frosty place, that's why your writing, You are going to smile again. I can see it!. Warm hugs to you, o you to help you bloom and smile again.

Constance13 profile image
Constance13 in reply to sandydame

How kind sandydame. Feel like a dammed great weed atm. Had a REALLY bad night. Sunny but freezing today - one half is right anyway. 😫🧑🏻‍🦳🦠

PMRpro profile image
PMRproAmbassador in reply to Constance13

A weed is just a flower in what the gardener thinks is the wrong place. But they aren't always right ...

Constance13 profile image
Constance13 in reply to PMRpro

True! I'll consider myself as an attractive weed that has delicate flowers appearing.😂😂😂 I will grow tall as the sun shines.

Kendrew profile image
Kendrew

I love the book this is from. X

A thoughtful moment!
powerwalk profile image
powerwalk

No telling of!!! You dont deserve it. Just hugs from us all! X

HeronNS profile image
HeronNS

You need a hug. 🤗

And reading about your daffodils coming up. Haha, we are having a real snowfall even as I type. Like the good old days when the snow would fall gently past your window and gradually pile up. And tomorrow is supposed to be cold and sunny, like a normal winter day in Nova Scotia. Bring it on I say, and so do my bones! So tired of rain and grey.

💐

Constance13 profile image
Constance13 in reply to HeronNS

This weather is beastly, isn’t it?

HeronNS profile image
HeronNS in reply to Constance13

I was trying to find out where the UK/European storms develop. Do the ones we experience peter out in the far North, like over Greenland, or do they continue on and fuel whatever is already developing over there, but I couldn't find that information. We've had some doozies here this winter, as have you, but I don't know if they're directly connected.

Constance13 profile image
Constance13 in reply to HeronNS

We do seem to get a lot of your weather in England and in Germany - not so severe though.

HeronNS profile image
HeronNS in reply to Constance13

We've had some humdinger storms this winter, and hearing about Eunice is what piqued my curiosity, but I couldn't find out where it (she?) developed.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Storm Eunice & Storm Dudley.

Both storms were driven by events thousands of miles away. The La Niña weather pattern in the tropical Pacific has turned the seas around the equator cooler than usual, and this phenomenon often brings a wet and stormy end to winter by invigorating the jet stream and sending it hurtling towards us.

La Niña has also been affecting NZ over the last few weeks….

HeronNS profile image
HeronNS in reply to DorsetLady

How did the storms get to you? That is the question. No doubt La Nina has had something to do with the atmospheric rivers which inundated British Columbia and part of US west coast a few months ago. We also have had major washouts from atmospheric rivers - and I had never heard of this phenomenon before.

I hope that today's snowfall reaches you as gentle spring rain....

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Because of jet streams we always get ‘your’ weather, but sometimes we also get weather from tropics - hence the La Niña

Recent storms Dudley & Eunice (although not Franklin which came a couple of days later) contained a "sting jet": a small, narrow airstream that can form inside a storm and produce intense winds over an area smaller than 100 km.

Sting jets, which were first discovered in 2003, and likely occurred during the Great Storm and Storm Arwen, can last anywhere between one and 12 hours. They are difficult to forecast and relatively rare, but make storms more dangerous.

Sting jets occur in a certain type of extratropical cyclone - a rotating wind system that forms outside of the tropics.

These airstreams form around 5km above the Earth's surface then descend on the southwest side of a cyclone, close to its centre, accelerating as they do and bringing fast-moving air from high in the atmosphere with them.

When they form, they can produce much higher wind speeds on the ground than might otherwise be forecast by studying pressure gradients in the storm's core alone.

Meteorologists are still working to understand sting jets, but they are likely to have a significant influence on the UK's weather in a warming climate.

No doubt climate change is having an impact as well

HeronNS profile image
HeronNS in reply to DorsetLady

This is what is curious, as New Zealand is in the South Pacific and the UK in the North Atlantic. We get tropical storms, but they start off the coast of Africa, and pick up steam as they near the Caribbean, before, usually, veering northwards. But this is all happening within the Atlantic (although I think rarely they cross Central America or Mexico and affect the west coast).

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

That’s odd, the prevailing winds travel west to east - but if your tropical storms go from Africa to Caribbean then they are going the opposite way.

HeronNS profile image
HeronNS in reply to DorsetLady

And dust from the Sahara falls in the Americas!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Sahara dust here as well at times!

HeronNS profile image
HeronNS in reply to DorsetLady

This is the end of today's meteorology lesson! I've learned a lot. :)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Makes a change from PMR/GCA…but still affects us…🌀🌪️

HeronNS profile image
HeronNS in reply to DorsetLady

🌤❄

HeronNS profile image
HeronNS in reply to DorsetLady

youtube.com/watch?v=q2cSC2t...

youtube.com/watch?v=s7lVGhT...

Jackoh profile image
Jackoh in reply to DorsetLady

Amazing what you learn on this site! 😂

herdysheep profile image
herdysheep in reply to DorsetLady

Really interesting. Thank you. Like everyone, sick of grey and wet. Does nothing for the mood.

PMRpro profile image
PMRproAmbassador in reply to Constance13

Sometimes it is worse.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Have a look at this re jet streams - one in northern hemisphere, one in southern, one at each pole-

….scijinks.gov/jet-stream/

…and yes we do sometimes get yours, but depends where the jet stream - sometimes above UK, sometimes below….

HeronNS profile image
HeronNS in reply to DorsetLady

Thanks. on our local weather they show the jet stream, but not what happens as it moves beyond our side of the Atlantic. I guess we can, because of jet stream, be pretty sure we don't get your weather! At least not until it has circumnavigated the planet.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

Well ours has to go a long way to go westward to get to you (and storms would probably run out of steam)…..whereas yours just has a hop across the Atlantic 😂🤣

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Many storms in northern Europe do derive from the leftovers of hurricanes in the US but I think it really depends on where the air forming the air stream originates: this illustrates it:

bbc.com/news/magazine-24305230

and then it is subject to the jet stream and where that is relative to the European land mass is critical. UK storms can be bad - but when they pass over to the EUropean mainland, they can pick up and the wind speeds get even worse.

plymouth.ac.uk/discover/why...

PMRpro profile image
PMRproAmbassador in reply to PMRpro

And Wiki tells you about EUnice

en.wikipedia.org/wiki/Storm...

HeronNS profile image
HeronNS in reply to PMRpro

British weather is unique, but in Nova Scotia we say "If you don't like the weather, wait five minutes" and it will change!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Used to be like that in the UK - but more reliably than it is now!

Nextoneplease profile image
Nextoneplease

Well, Constance, what have you started?!? A meteorology lesson of all things!! Hope you get your bright days and feel better soon 🤗xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Nextoneplease

Sorry…HeronNS and I got a bit sidetracked …or should that be blown off course..💨….must be that Friday feeling. 🤔

Nextoneplease profile image
Nextoneplease in reply to DorsetLady

No worries DL, it’s good to see people get blown off course 💨 sometimes 😉especially on Fridays! 😄

Longtimer profile image
Longtimer

I totally get how you are feeling....I can get quite low sometimes because I n the last two years have got worse.....waiting for blood test results (2 weeks!)....when I hear "normal" I should be pleased....so what is going on then! The weather definitely makes a difference, if only that we can be out in the sun, love my garden/summerhouse....I feel like I have escaped!My sister has RA and was low today....so we moaned together....great that we can vent how we feel and really know exactly as it is.......

Like Captain Tom said .....tomorrow will be a better day.....

Forecast here is sun, will send it over to you!....here's hoping!....🙏

calicojoy41 profile image
calicojoy41

LOVE AND HUGS TO YOU HANG IN THERE.

calicojoy41 profile image
calicojoy41

LOVE AND HUGS TO YOU, HANG IN THERE, WE CAN BE TWO OLD TOUGH LADIES!

Jackeranda profile image
Jackeranda

Oh boy I'm hearing you Constance!You sound like such am amazing lady with awonderful sense of humour 😀. We can but do our best and keep going in the knowledge that there will be good and bad days and the bad days do pass. Appreciate the little things and above all be kind to yourself, you deserve it 😇

Megbird profile image
Megbird

Hi Constance you are stronger than you think. Lets hope that the sunshine 🌞 will be here soon. Yesterday was brilliantly bright where I was. All the best.

Janet57 profile image
Janet57

No telling off or kicks, just the lovely support from this group to cheer you a little. People don’t understand how wearing living with a chronic condition can be. Here’s a pic of a visitor to my garden yesterday. So pleased to see it 😊. Take care Constance 13. Sending a virtual hug.

Woodpecker
Constance13 profile image
Constance13 in reply to Janet57

Thanks Janet.We live facing beautiful Spa gardens and we have a balcony which attracts masses of birds. They do cheer you up. They become quite tame after a while.

in reply to Constance13

There are some wild parakeets living in some nearby woods who sometimes fly over making a huge fuss but they are lovely to see.

in reply to Janet57

That fantastic picture will cheer us ALL up thank you

Janet57 profile image
Janet57 in reply to

Thank you - I love seeing them in my garden. Had two young ones last year, great to see them being fed by the parents 😊

in reply to Janet57

We have a local green one, he’s very handsome plus white doves, a heron and we once woke to find a pheasant in the garden. We live in a city but on the edge with plenty fields and streams nearby but the heron still comes to raid the ponds! I haven’t seen our hedgehog for two years or the field mice but I think as we’ve been stuck at home so long and in the garden we’ve frightened them away maybe.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

Hedgehogs are on the brink of becoming an endangered species - due to many things, but one being warmer winters when they don’t go into a deep enough hibernation. They wake up and use up precious energy…then in spring when they should be out and about many aren’t strong enough to survive.

Constance13 profile image
Constance13 in reply to DorsetLady

😏🥲

Jackoh profile image
Jackoh

Hi Constance - just a blip - lighter nights and better weather is soon coming. Your symptoms should then improve my friend. Keep carrying on carrying on- things will seem better soon. Big hugs Jackie xx

Daffodilia profile image
Daffodilia

I am usually on 6 mg after 3 years of PMR - I increase by 5 mg for 5 days and decrease 1 mg at a time back to 6 - helps when pain gets miserable - about once a year so far

A slice of forbidden chocolate cake with a friend is my answer to the blues! One step in front of the other, we keep going. Love to you Constance x

Marlenec profile image
Marlenec

Constance someone wrote "If we didn't have downs we wouldn't have ups". Give yourself a great big hug from us all.

Herman99 profile image
Herman99

I am adding to all the virtual hugs.... 🥰

Spirograph profile image
Spirograph

Morning Constance from a bleak and windy Aberdeenshire. Don’t know if I’m enduring a PMR flare up or a reaction with build up of steroids, since initial massive dose last March and tapering down to 5 mg (exruciating middle back spasms and groin pain, accentuating my new default mode, limp). Succumbed to Ibuprofen capsules, as gel from doctor does not alleviate the pain(s). (Although my trusty hot water bottles do help). Blood test yesterday and result will be a telephone review from doc on Wednesday. Off, from my part time teaching work at local secondary school, since Thursday and can’t see return. Too much exertion yesterday. Nearly cancelled visit from friends, but glad I didn’t as they shared the right amount of optimism.Unlucky for you, I just picked up your post and have ‘ranted’ to you. Know that I am aging at 67, but this PMR has been a nasty surprise and curtailed my outdoor life, (except for dipping in the sea at Stonehaven)

Have read the replies and the digression(s) have made me smile. I have been keeping ‘still’ watching episodes of Frazier and ‘thank you all for listening’. ☹️🙂🙂

Constance13 profile image
Constance13 in reply to Spirograph

We all (or most of us) rant from time to time- we ARE human after all and are upset by what life has chucked at us.Nothing to what is going on in the ‘real’ world though!😟

PMRpro profile image
PMRproAmbassador in reply to Spirograph

Sounds like me for the last 2 weeks!!! Myofascial pain syndrome that is making greater trochanteric pain syndrome wake up. Again. It is always the start of a flare in disease activity for me.

PS - the weather isn't really helping and I'm not even in the middle of it!!

Spirograph profile image
Spirograph in reply to PMRpro

Thank you. I’m learning a whole new language, one that helps understanding of the ‘surprising and unwelcome’ package that is PMR. Blood test Friday, first since end of June last year. (Had three from date of diagnosis beginning of March 2021) Wish I had had more, to monitor the tapering down to 5mg preds., as sure spike started ages ago, but foolishly being ‘stoic’. Results from telephone call with doctor on Wednesday.

PMRpro profile image
PMRproAmbassador in reply to Spirograph

Symptoms are always a more powerful indicator - you have to learn to take notice of your body and any cries for help!

bussell profile image
bussell

Dear Constance, over the last year your wisdom and wit have meant a lot to me, and your contribution to all of us goes back long before my time. Don’t be downhearted. Spring will come - it always does -and your spirits will lift. And remember how much you are loved and appreciated by us all. Judy

Pixix profile image
Pixix

Sending love & hugs. Being Down is definitely allowed, especially when longing for Spring, & devoid of sunshine &natural warmth! One of my best friends passed away this week, only 66…life is cruel, & all the news is lousy! Do something naughty…alcohol, food, chocolate, whatever…we are having hot toasted hot cross buns in between the rugby matches this afternoon. Take care, & hope you feel better soon, S xx

Bridge31 profile image
Bridge31

Woke up to a bad day today. The hip pain and back spasms are so debilitating. However it’s our Golden Wedding today and we are in Portugal so we have warmth and sunshine. Our friends have decorated the kitchen with balloons and banners.My day will improve and I hope yours will too Constance.

Love and hugs from all of us here. X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Bridge31

Congratulations-have a lovely day 💐

Constance13 profile image
Constance13 in reply to Bridge31

Oh! Have a wonderful sunny, golden day. 🤢🤢 (in case you don’t recognise those emojis - they are ‘jealousy)!!💐💐👏

Our 65th wedding anniversary coming up in September.

k-mac profile image
k-mac

What a lovely thread to read full of fascinating facts , knowledge , wit and compassion. I’ve learnt, a lot and this time not just about PMR. I so ‘get’ how you are feeling , after 7 years of PMR gca and now what seems to be RA, I find my inner voice slipping into ‘grumpy old so and so ‘ not me at all and am so shocked ! 🙈I think I need to adopt Buddhist practices or study meteorology ...but have an appointment to see Doctor Rob in a couple of weeks 🙏🙏🙏 Hope you’re feeling brighter and able to enjoy sunshine 🌈🌈💃🏼🤣

autumnlass profile image
autumnlass

How you feeling today Constsnce13? Thinking of you and hope you’re feeling a bit better. 🤗🌈

Constance13 profile image
Constance13 in reply to autumnlass

How kind! Improving, slowly. The SUN is out!☀️

autumnlass profile image
autumnlass in reply to Constance13

The SUN is OUT!! It’s glorious here - uplifts one straight away and I’m so glad that things are improving for you. I’ve been not dissimilar to you of late.. the weather has been so miserable, raw and cold … never liked February! Hooray Spring nearly here! Clematis out already! You take care and enjoy the longer days and sunshine while it’s here! X

Longtimer profile image
Longtimer in reply to Constance13

Told you I'd be sending the sun!.👍

AncientMariner profile image
AncientMariner

I feel for you, this condition is quite attritional. I get weary of having to juggle Pred around my GCA and Necrosis developing in my jaw and the professionals say with apparent blitheness we need you off Prednisolone so reduce. Yes sure and then I can't eat and am up all night in agony as Painkillers don't work after a certain point. Then I see all those terrified people in Ukraine willing to fight and kick myself, that's what I do mentally at the moment and some good people on this site pointed me towards a referral to a pain clinic, a great suggestion no professional had mentioned.

Constance13 profile image
Constance13 in reply to AncientMariner

I don’t think “willing” is the correct word here. They have NO choice. 😟. We are lucky (for now) none of us can tell. (Better not go there).

Skysey profile image
Skysey

Sending positive thoughts and virtual hugs to you. Things are sure to improve soon when the weather gets better. Xxx

Tiggy70 profile image
Tiggy70

Sending you good vibes and hugs. Spring is just around the corner. As you said “this too shall pass” 😘

prunus profile image
prunus

I understand and am sorry for you. My garden means everything to me. Have you a park or open space near by? As you know I am older than you and I keep a close eye on my garden. Try and imagine clumps of snowdrops spaced out round the borders waving their heads in the breeze. They are interspersed with crimson and off white hellebore and daffodils at various stages of changing. Hope you can get out soon. xx

PuttyPenguin profile image
PuttyPenguin

no you don't need a kick just a bit of encouragement. Take it easy, be kind to yourself - you just don't realise how far you've already come!

cycli profile image
cycli

Late to this thread Constance. You definitely don't need a kick. Just the opposite. All the replies demonstrate that amply. After weeks of rain, snow, freezing, power cuts we have kind weather at last. Chronic pain can only truly be understood by those who share your condition and on here you know we do. Stay strong it will pass. All the tree clearing, wall rebuilding and repairs and replacement of our quad bike, recently stolen from our barn, just add to the long list of things still to do. Staying positive and looking forward is the only way to cope and I know that you will do this. Our bulbs are peeking through and the snowdrops dancing in the wind are wonderful to watch. Just filled 6 coconut shells with seeds, nuts and fat for the birds. Winter will soon be over and warmer spring/summer days to look forward to with the fresh green of new leaves and cherry blossom. Keep smiling :-)

HeronNS profile image
HeronNS

Here's a playlist for you!

youtube.com/watch?v=d-diB65...

youtube.com/watch?v=HNBCVM4...

youtube.com/watch?v=2nGKqH2...

youtube.com/watch?v=iMkqA01...

HeronNS profile image
HeronNS in reply to HeronNS

The videos seem to work if "watch on youtube" clicked on.

HeronNS profile image
HeronNS in reply to HeronNS

Don't Worry, Be Happy, Bobby McFerrin; Three Little Birds, Bob Marley; What a Wonderful World, Louis Armstrong; Jeeves and Wooster, Anne Dudley.

Spirograph profile image
Spirograph

Thankyou for your good reply Constance. Now comfortable in the sit ooterie’ at the bottom of the garden. Cosy, with wee flame electric fire, hot chocolate, chill piano music from the starlight speaker and looking over the countryside towards Durris. Early morning melancholy banished for the time being. A skein of geese passed over, so spring is coming. 🌺

Macas profile image
Macas

Dear Constance so sorry you are feeling low. It will pass we are tougher than we think. This illness has taken so much from us but we Will Not let it win.Tomorrow is a new day I hope it brings some relief from you pain.

Best wishes

Mary x🌸💐🍷

7Louise profile image
7Louise

Hello Constance, spring is trying to appear as hard as we are trying to heal.... she is pushing through the cold winds, the hard ground and reaching to the sun, which will shine again, within our hearts, our minds, and give us strength and hope, to fight back against this nasty disorder, that can take so much of our power , and succeeds in replacing it with pain, and stiffness. 😕

The snow storms and incredible cold weather in Ontario this year, the lock downs and Covid throughout our family , and a PMR flare up (worse than normal) has really been a challenge- but when I can, I stand outside, and take deep breaths of the fresh cold air, I peddle on my old spin bike for even 10 minutes if I can , ( it hurts less than walking for me) and the blood flow really helps my legs feel almost normal for a bit and my mood ( added dopamine and serotonin) is much improved for a while also. This can really help, slow and steady, a bit of exercise, when you can, is so therapeutic. Remember your ‘happy supplements’ like B’s and C’s, and D, and magnesium for good sleep and muscle help.

Be kind to yourself, take hot showers, and enjoy your books, a humorous one can be as good as any medicine! Spring is coming! All of the love and best wishes on this forum, are absolutely amazing 🤩 ... ahhhh!

Constance13 profile image
Constance13 in reply to 7Louise

Good luck to you too Louis. Pain today was much relieved. With all the good wishes I have had pain didn’t dare to be as bad!! ☀️💐

Golden20 profile image
Golden20

Definitely no kicks. Just want to say I’m rooting for you. Stay strong, not easy I know. Thinking of you xx

Singr profile image
Singr

This can happen to us all from time to time. Especially in the winter months. Look forward to the summer weather and some sun. It's a healer. Big virtual hugs.

Constance13 profile image
Constance13

I will (get it together) I ALWAYS do! I’ll bounce back but it’s more like ❄️⚡️🌧🌑 atm. Gout has joined in now and crystals are stuck in my ankle so I can’t walk.

ubaoz profile image
ubaoz

Given the circumstances, it's quite reasonable to have wretchedly miserable days, when keeping ones chin up is extraordinarily difficult. We can't be strong all the time, even when we'd like to be. I even find a good "poor me" wallow every now and then can actually be helpful (even if to just get it out of my system). We're allowed to feel sorry for ourselves from time to time – we have good cause!

Fortunately, as you say, you will bounce back. I hope that will happen very soon for you! All the best from Oz.

Telian profile image
Telian

You’re not losing it Constance. No tellings off needed either. Savour your beautiful views, have more duvet days than usual and generally spoil yourself while spring emerges and entices your hiding spirit and humour. It hasn’t gone just hibernating for now. Big hugs 🌺🌹xxx

Constance13 profile image
Constance13 in reply to Telian

Thanks Telian. Good to hear from you. Hope life is treating you kindly. 🌾🌻🌞

Telian profile image
Telian in reply to Constance13

You are welcome. I won’t bore you with detail but same trials and tribulations. We are getting to some kind of comfort zone in the house, which is heavenly. Take care and look after yourself- hot toddy’s methinks are called for for you and hubby! 🌺

Hope you’re having a better day ?

York54 profile image
York54

Dear Constance , just coming to this thread. So reassuring to see the love and support that always flows from this forum. Can I also add gentle hugs and wish better days ahead for you x🌺🌺🌸🌸🌷🌷

Constance13 profile image
Constance13 in reply to York54

Thanks York. Hope life is treating you well.💐🌾

Tapestry1057 profile image
Tapestry1057

The people on this forum never fail to amaze me with their understanding, advice & reassurance. Knowing that you’re not alone is hopefully making you feel a little better Constance. My very best wishes to you.

Grammy80 profile image
Grammy80

I just saw that you had posted about feeling down and overwhelmed and let's face it, totally helpless to change things. It looks like the world has responded to you and I'd say you have quite a few caring friends...you have been an inspiration to me, so I had to give you a hug. I do think venting our frustration helps when we get to a certain point.

Looks like you might be having a guest or two....I saw some offers to visit. I know you appreciate life....you sure don't need a kick, just your forum friends. We all have the right to get a bit 'ticked off' and I know you'll go forward, Constance. Take good care. 💕

Constance13 profile image
Constance13 in reply to Grammy80

Many thanks Grammy.

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