Coping with Chronic Pain , it's the simple things we miss most.

[Blearyeyed]

Hello friends,

If you are in the UK like me I hope you are not being blown off into the dark grey yonder by this terrible wind .

I was talking to a friend on the phone today who asked me what I will do when I finally get the pain under control?

My first instinct was to think of all the old things I used to do, crazy activities , sports, busy days out .

I rattled off various things and she giggled , we put the phone down and I went to sit down.

It was then , when I stopped and let my brain calm down and thought for a minute , I came up with a much more genuine, very short and very different list.

I realised what I would really want to do is eat something crunchy without getting an earache , and probably enjoy a week of comfortable, undisturbed sleep.

Because, I think , for most of us dealing with chronic pain , when it comes down to it , it is the simple things we miss the most.

And I know when I can, I am going to really enjoy those simple things and never take them for granted again.

[pmrkitty]

Amen! I'm just sitting on the recliner with my heating pad wrapped around my shoulders, moving in to my arms and then I will sit on it! I would just love not having pain. I can't wait for the day when there will be little to none. My wish is the same for all of us! Big soft hugs to you.

[Blearyeyed in reply to pmrkitty]

Yes, although we all say, " Hail to the mighty wheat bag!!"

I bet one of your simple things will be being able to sit down without one occasionally like normal people .

I have another one too.

Just being able to go to bed and lie down on your pillows without having to spend half an hour getting them in the right places.

Why, what bliss that will be!

Love to you and thanks for the reply

[pmrkitty in reply to Blearyeyed]

Me too!

[Daisychain12 in reply to pmrkitty]

Oh the bliss of the wheat bags xxx

[scats]

Oooh!

I've been comfortable most of the last month, just minor aches, you've brought it all back to me how bad it can be. Made me so grateful to be where I am at the moment. I hope things soon improve for you.

Lets hear it for the wheaty bag I love mine so much I gave everyone one for Christmas last year.

[Blearyeyed in reply to scats]

Yes , I did that last year too, with Katy versions for my friends with wheat allergies. Great minds think alike!

I have come up with a cunning bum bag type pattern now with adjustable straps so I can fit in the mighty bag and fasten on me when I potter about.

It is definitely the simple things that matter most.

Gentle hugs and I am pleased to hear that there will be time when I use my wheat bag just to get toasty.

[scats in reply to Blearyeyed]

Go easy tho it takes a while, and go gently with those sports you've been missing.

[Blearyeyed in reply to scats]

Thanks I will definitely need that advice.

I have already fallen foul to the perils of trying to do too much on a light pain day and paid the price.

I am all go with the flow now, what gets done , gets done, what doesn't has to wait it's own good time.

I am looking forward to the day when I am allowed to go for a walk when I feel like on my own again instead of having to have supervision in case I go dizzy and fall down a country ditch!!

Walks alone are one of my greatest simple things I miss.

Falling in a ditch seemed so much more fun when we were 18, who knew the troubles and perils it would eventually bring!

And just being able to get my sketch book out or read a book whenever I feel like without a headache.

What simple things brought you the most pleasure when you started to get on your feet again?

[scats in reply to Blearyeyed]

Definately walking. It took a long time to reach any distance, needed a hip replacement and that set me back about a year at least. Don't be afraid to use a stick. I know, took me a long time to accept but with the hip I had no choice. I have only just had the confidence to go without it. On longer walks and shopping I still take it because I get wobbly on turning or it's there when I get tired. " Stick " aquired a charactor and had adventures with the grandchildren which made it more acceptable.

I am working on reaching the coast, just 4 fields away but fields are heavy going with PMR. I used to spend hours watching the birds and the tides.

[Blearyeyed in reply to scats]

Same here,

Until a few years ago I worked as a volunteer warden for a tern colony at Cemlyn Bay on our island of Anglesey , and as a nature artist I was forever out and foraging, photographing and drawing inspiration from my long walks.

I have always had a walking stick, but it used to have many other causes than to keep me up straight. Digging about in hedges , pushing rocks out of the way to look at creatures, holding back branches when we followed my nose instead of the path, or pointing out the things to see.

My priority now is to get dizziness and blurred vision free, so that I can enjoy the things around me again and be able to pick up my pen, pencil or brush and get back to creating again.

I am sure we will trudge those muddy fields, amble over those rocky shores and conquer those hills again soon. Let me know when you make it and I will do the same.

Warm hugs

[scats in reply to Blearyeyed]

Blured vision must be really frustrating for an artist, I hope things impove soon. I had a cataract op. in June and it has made such a difference, small details I had almost forgotten.

I studied botany at Aberystwyth in a different lifetime and later lived on Mynydd Epynt for several years and Wales is something I have missed for some years now. You will need to be able to walk up hills more than I will on the south coast.

[Blearyeyed in reply to scats]

Yes , that is true.

I am looking after the sun today after all those blustery days , it is my birthday tomorrow ( I will be 47, young in the PMR/GCA standard but stuck in a crossover of illnesses) so usually I would have forced my slightly reluctant husband out for a walk, finding all those interesting things thrown up by the wind on the beach , or off in the pine forest for my annual pine cone hunt .

He is escaping Scott Free this year though, I can't even manage a drive in the car to sit looking out at the sea with binoculars and an ice cream.

But I will strive on , and perhaps one day we will meet on the shore at Aberwystwyth and share a 99!

Good Feelings all over

[scats in reply to Blearyeyed]

Look forward to it.

[Daisychain12 in reply to Blearyeyed]

Some of my happiest memories are of Barry island beach. Magnificent and breathtaking. Melbourne struggles to match it xxxx. Love Wales. Xxxx

[Hidden in reply to scats]

Caravan site on the estuary at Ynyslas. Almost 1950's!! In 1980's. Beach boardwalk! Orchids etc. Superb.

[scats in reply to Hidden]

It was you!

[Hidden in reply to scats]

Well! Hit a botanical spot there! Fading memory drives me on regardless!!

[sennetta in reply to scats]

As long as the grandchildren don't decide to play Pooh Sticks with "stick" !

[scats in reply to sennetta]

Good point we do have a poo stick bridge near here.

No, Stick is always the hero of the story by saving the day. Usually by reaching something high up or out of reach in some way.

[ling in reply to Blearyeyed]

Sorry to trouble you, could i ask -

Did behcets cause your PMR/GCA?

Is the dizziness a symptom of GCA?

Thank you

[PMRpro Ambassador in reply to ling]

This member is no longer on the forum so you are unlikely to get a reply, That is also what a post by "Hidden" means, and it is also from over 3 years ago.

Behcets is a disorder in its own right, as is PMR. One doesn't really "cause" the other, you just develop the symptoms of both.

But yes - dizziness CAN be a symptom of GCA:

healthunlocked.com/pmrgcauk....

[HeronNS in reply to PMRpro]

I think Blearyeyed is inactive but still a member, or her name wouldn't show up would it? There is a Hidden posting in the thread also, however. Blearyeyed last posted a year ago.

[PMRpro Ambassador in reply to HeronNS]

I thought BEE had left - or maybe she left and later returned. Anyway - she'll probably not see it

[HeronNS in reply to PMRpro]

I looked at her profile and not even a reply for a whole year.

[Blearyeyed in reply to PMRpro]

No , not left , just useless!Every time I plan to reconnect with everyone and tell you all what has kept me away I get it by another crisis , I've had one hell of a eighteen months , and none of it was Covid related , except for the added couple of flare ups from dealing with extra humans in the house for a while getting under my feet / skin / last nerve and panicking healthy humans on the phone terrified of having to stay in the house.

I am definitely getting near the last post with it all though and will be posting soon to catch up , and hopefully able to look in and be helpful from time to time.

You don't get rid of me that easily! 😉😂😂😂

Hugs at a safe distance to all xxx

[Blearyeyed in reply to HeronNS]

Hello , still alive ( just!) answer to absence to Pro , bee x

[HeronNS in reply to Blearyeyed]

Oh good - missed you!

[ling in reply to PMRpro]

Thanks for the info.

HeronNS is right.

I am familiar with how the HU boards work.

[Blearyeyed in reply to ling]

No, Behcets didn't cause my GCA , as Pro says it's a different condition , although both illnesses have similar pain and dizziness symptoms as they are both autoinflammatory / inflammatory issues.As it turned out I did not have Behcets but a combination of three other conditions , Dysautonomia ( Cardiac / Gastric ) , Ehlers Danlos Syndrome and Fibromyalgia , along with many , many syndromes that are caused by all three of the conditions .

The first two conditions both have an affect on my vascular health so these may have made it more likely for me to have GCA/ PMR , especially at a young age.

All three issues cause dizziness and chronic pain ( both inflammatory and neurological ) as main symptoms anyway , my symptoms are ongoing even though the GCA is inactive now.

If you have symptoms of GCA don't hesitate to contact a GP , speed is essential in it's diagnosis and treatment to protect your eyesight.

But , if you are suffering from dizziness and severe headaches for a number of weeks with no other GCA symptoms it is also important to get it checked by a doctor as there are many different health issues that could be causing that we probably also need treating .

Take care

[PMRpro Ambassador in reply to Blearyeyed]

Oh Bee - so good to hear from you! Glad to be wrong xxx

[Blearyeyed in reply to PMRpro]

You can't keep a good girl down forever ( or should I say totally nutty nuisance ) , hoping to write a post soon , sorry for the radio silence , I've been thinking of you all and seen what great work you've been doing with all your posts , you have been , as ever, a life saver , more hugs and a big ice cream , xx

[MrsNails in reply to Blearyeyed]

Hi BeeGood to see you’re still on the Group even if very quietly!

Hope you’re doing OK

MrsN 💐

[ling in reply to Blearyeyed]

Many thanks for replying.Really sorry to hear all that you are going through.

Thank you very much for your advice. Will do the necessary. Its been a confusing and stressful time, so have been in denial.

Please continue to update us on how you are doing.

With best wishes.

[Hollyseden in reply to scats]

Same here. Brought it back to me how bad it was. I remember the agony of trying to move pillows about to get a bit more comfortable hah, made my eyes water even to try to move pillows. Got a heatpad that I still love and use. Brilliant for wrapping round my shoulders.

[HeronNS]

Never having heard of a wheat bag of course I googled and the first thing I came up with was a warning. Please don't let them catch fire.

[Blearyeyed in reply to HeronNS]

Yes, that is a real hazard with them, especially if they are overused .

You get them out at the designated time and they still feel just warm on the outside. And you get very tempted to whack them in the microwave again so the get really hot, forgetting that they get warmer as the heat from the hot middle reaches out .

My friend has had many an event with the smell of burning wheat from the kitchen!!

Used properly though, they are safe and cosy and can wrap comfortably round the joints that need a little warmth , and safer than hot water bottles.

What are the simple things that you miss most , and what is the equivalent of a wheat bag where you are?

Gentle hugs

[HeronNS in reply to Blearyeyed]

I don't own a microwave. I think there are little bags people can buy for their necks - but useless to me. I don't know what they are filled with. I use a hot water bottle for my legs and feet at night especially in winter as I don't like the weight of blankets on my feet. I tell you what I don't miss: I don't miss mowing lawns. My physiotherapist has told me I shouldn't do any housepainting as we prepare for our move. I won't miss that! I miss the energy I once had, though.

[Blearyeyed in reply to HeronNS]

Oh yes, that horror of having your feet trapped in by blankets!!

Having to kick out the corners if you stay away and get in a properly tucked in bed.

I think it's a thing that get alot of us , I do have restless legs , and many people that do that I know all say having tight bed clothes is something they could never stand , even as children.

Are you moving somewhere nice?

Exciting but also stressful I am sure. Try and get as much rest as you can while moving, and leave all of that pre move painting , cleaning and box moving to others , you will need all your energy just to make the move .

I am impressed you have no microwave.

You have a great new simple thing coming, that feeling of happiness on crawling into your bed after settling into a new home. Tucked corner free, of course

Hugs and good luck with the move

[HeronNS in reply to Blearyeyed]

Thank you. Others on here will already have heard me bewail the renovations we have to do to make our condo livable, but it will come together eventually. We are still going to be in the same part of town, less than 15 minutes walk away from our current home, which our son has bought. So it could be a lot more stressful than it is.

[Blearyeyed in reply to HeronNS]

I am just constantly impressed by the amount of huge projects and big things people are managing to get on with in this group.

It is really inspiring, you are all giving me confidence for the future and hope that my chance to really enjoy the simple things in life isn't far around the corner.

Thank you so much

[pmrkitty in reply to Blearyeyed]

The equivalent of a wheat bag in US is rice and lentil beans mixed. Absolutely wonderful. My Daughter- in-law made me one and it is one of the best gifts I've ever received.

[Blearyeyed in reply to pmrkitty]

Yes, autocorrect changed my words from beany to Katy yesterday , I actually meant to say I made people versions of oat and beany heatbags , if they were wheat free, last Christmas . Many were converted.

This year I am going to have to make replacements for the ones I made last year because of over use, and ones for their partners , because they were overused because those so called loved ones kept pinching the bags to use themselves.

Hope you enjoy a pain free day and some of those simple things.

[Hidden in reply to HeronNS]

Or over heat them until they smell like burnt popcorn!.......

[Blearyeyed in reply to Hidden]

Umm, burnt popcorn!!

One of those simple things you can enjoy when you are feeling bad.

Last night I had a night enjoying a little geek time on the sofa with the family watching Lord of the Rings.

I actually wrote another post on how the Lord of the Rings brought me clarity in how disease makes me feel in the other group I am in.

Unfortunately , I am in one of those situations were one disease has caused others .

But thats how it goes sometimes, I have had over ten years with escalating issues, so one of my simple things , not that it seems simple to achieve , is getting very soon to be able to put a name to the disease that has caused ( or aggravated) all of the others ( including the one we suffer here ) , not long now though.

Have a great day and enjoy your simple thing.

[SheffieldJane]

You are so right Blearyeyed, whatever will we talk about though? 🤔

[Blearyeyed in reply to SheffieldJane]

Without all of that wicked brain fog and sleep deprivation I am sure we could think of something!

What simple things do you, or have you missed the most?

Hugs Bleary-eyed

[SheffieldJane]

Feeling at home in my body and trusting it I think. Not having to make all those endless calculations before I commit to anything. Spontanaity,

[scats in reply to SheffieldJane]

That is so true . I do it so automatically now that I'd forgotten I did it.

Hope your chest infection is clearing, been missing your wise words.

[SheffieldJane in reply to scats]

Thanks scats! X

[Blearyeyed in reply to SheffieldJane]

Absolutely!

You have added another one to my list.

The ability to be spontaneous, just get up and go, not have to check your medication, check how dizzy you are, check the weather and make sure you have the sort of things for a quick trip in your bag you used to only have to worry about when you had a small child.

I really miss that one, have a great day

[Hidden]

I have a TENS machine recommended by the physio, works really well especially if the muscles are sore, though I think I am becoming a masochist I sometimes turn the pulses up really high to teach my body a lesson!

[SheffieldJane in reply to Hidden]

Nooooooo!

[Omanain]

What little things am I missing! I am now almost immobile with a suspected fractured hip and I caught myself looking at my newly fitted windows and thinking 'Will I ever be able to open those myself and clean the ledges'? Seems daft I know, but keeping everything nice has always been important to me and now I am having to learn to drop my game.

[Blearyeyed in reply to Omanain]

I am sorry about the hip, but hope the post gave you some enjoyment.

I completely understand how you feel.

Something that sounds crazy to the healthy but hits home with anybody who has pain affecting their mobility .

I sat the other day looking at a crisp packet my teenage child had left on the floor near the sofa ( they walk past the bin to leave the room why they don't get rid off it then I don't know , but that is a rant for another day!)

It took me two hours looking at the thing deciding if it was annoying enough to be worth starting the banging head or going dizzy to pick the thing.

That is another simple thing I miss , the ability to just bend down at whim to do something without having to think about it first.

Have as good a day as you can , and enjoy the simple things you can

[Tonysue]

What lots of lovely stories your post has brought in. Made me feel that I was not alone in the way I feel about what I can’t do. And I’ve been talking to my husband and we both realise that I am getting better. Down to three and a half mg. But I’d do have an issue with my lower spine which is not PMR and it makes walking tiring and stiff. I miss being able to do the shopping without wondering when I will be able to go home and rest. 🙂😉

[Blearyeyed in reply to Tonysue]

Well done with tapering .

And here's to the day we both get to do the shopping without having to have a rest and eyeing up the cafe.

Yes, just being able to pop to the shops when I feel like without needing a long rest afterwards is another simple thing I miss.

Although, having an excuse to sit down with a cuppa while someone else puts away the shopping is a new lovely simple thing I have found . So there are some silver linings.

Have a lovely day and enjoy your simple things.

[bunnymom]

I saw a young mother carrying a toddler on her hip yesterday and wondered how in the world she could manage it! My perspective has gotten very wonky.

[Blearyeyed in reply to bunnymom]

Rather than having a wonky perspective I prefer to think of it as chronic pain sufferers getting a unique perspective on life that the pain free do not.

Apart from the fact that we have enough other wonky stuff going on to handle, although none of us would have wanted pain or an illness , we have learnt how precious all those simple , mundane things and activities we used to take for granted are in our daily life.

One of the silver linings of our conditions I suppose is that we will always cherish the simple things in life and know not to sweat the small stuff , even after we manage to get the pain under control or get to be pain free.

Enjoy your simple pleasures and those wonky thought too

[Valnvaughan]

I am looking forward to a walk hand in hand with the one I love.

[Blearyeyed in reply to Valnvaughan]

I have a great pair of gloves for that!

Lovers gloves, one single glove each and one shaped for two hands so that you can still walk hand in hand, skin to skin, without your fingers getting chilly in the winter.

Got them as a Valentines present years ago when we were still uncontrollable romantics.

Sometimes we just wear them while sitting watching telly for fun but then we are a bit odd in our house.

Hope you can have that walk soon , in the meantime, enjoy the simple pleasure of a smile, a wink and a snuggle on the sofa.

[Valnvaughan in reply to Blearyeyed]

Ohh! I want a pair of those! Lovely. Valerie

[Blearyeyed in reply to Valnvaughan]

The internet has them.

I believe we bought our original pair from a novelty toy and game shop which is also on the web called Hawkins Bazaar.

I actually made a new pair from funky fleece as the first pair started seeing better days ( bit like me!!😁)

[Daisychain12]

Bleary darling as a fellow artist I would love to paint again with no pain in my arms and fatigue. I miss my art so much. Do you still manage to create artwork? Xxxxx

[PMRCanada]

I miss dancing, sex and devouring whatever food I like (not in that particular order). Also I'd like to be able to blow dry my hair without my arms getting fatigued. I too am happy to not be able to mow the lawn, and likely shovel snow this winter.

[1964-karina in reply to PMRCanada]

😀 I would love to be able to blow dry my hair as well!! I end up trying to balance my arm on my knee to dry it. Glad it’s not just me 👍🏻

[Blearyeyed in reply to PMRCanada]

I absolutely agree.

I loved dancing the day and night away at concerts and music festivals.

I miss just eating what I want but with the other part of my health issues that will never change.

And I miss being able to dry my hair, or put it up in nice styles , more of a head and ear pain issue though than the arm thing. It also means I can't wear earrings either.

From the looks of things you have definitely hit on a big simple thing we miss.

Thanks for joining in and let's hope we can get our hair done soon.