A letter to my Chronic Pain and Fatigue from Aunt... - PMRGCAuk

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A letter to my Chronic Pain and Fatigue from Auntie Bleary-eyed aka the Bin Lady!!

Dear Chronic Pain and Fatigue,

If you are planning to spend the whole day with me could you at least make me a coffee and bring me some biscuits!

Thank you for being my least favourite wastes of time ,

Feeble hugs ,

Auntie Bleary-eyed XXX

πŸ˜‹πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜šπŸ˜₯

Have a great weekend to all those with equally high maintenance invisible friends !😘😘

UPDATE TO ALL

I have stopped replies now on this post to give priority to other posts for the day , but please do read through the replies below if you want a little therapeutic laughter .

And thank you to all my forum friends whom gave me their support with funny comments and cheer for managing to help me get back some of my energy again.

Have a positive weekend Everyone xxx

93 Replies
oldest β€’ newest

Are you ok? PM mexx

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Yes , the funny thought just came into my head and I thought I'd share it as I bet it's how many of us often feel.

Or am I the only one that talks to their symptoms ?!!😨😲😝

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Why would you assume the rest of us are as mad as you?!! I doubt you were ever normal. Mind you as your mad life usually mirrors mine in far too many ways that means I am heading down the same route!!!!

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Unfortunately shouting comments like that at your chronic illnesses has about as much affect as hinting for your OH to put the kettle on.

Nothing forthcoming , not even an old digestive!!!πŸ˜‹πŸ˜‚πŸ˜‚πŸ˜‚

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Low carb of course!

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I think on this occasion a red cross emergency parcel of a full packet of dark chocolate hobnobs may be the only remedy!

Do you think if I phone up for an emergency house call from the GP they might be available on the NHS ?

I think even my Doctor could manage to fill a prescription of a pack of choccy biscuits and a latte!!πŸ˜‹πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

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I doubt it's in their budget ...

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Knowing my luck they send me a cup of weak tea and a custard cream!

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Your gp doesnt even know what a prescription pad is let alone know how to fill it out.!!

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That's why I thought they might do better with a shopping list and a trip to Sainsbury's!πŸ˜‚πŸ˜‚πŸ˜‚

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My new delicacy, blackberries are in right now so I break off a piece of dark chocolate and pop it in my mouth with a blackberry πŸ˜‹

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If only I could get up enough energy to go and look in the fridge πŸ˜˜πŸ˜‚πŸ˜‚πŸ˜‚

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Ha, I’m laying on the couch right now!

I’ve had a flare the past couple of days and I feel as bad as I did 2 years ago. I did it to myself too, such a slow learner here!

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At least I can blame the trip a few days ago to the hospital.

Its really annoying when you can't blame anyone else.

Hope you feel a bit better soon , keep eating the chocolate and blackberries xx

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My biggest problem is I have not got the will power to stick to one blackberry and a tiny piece of chocolate.

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Six is about the right amount πŸ˜‚

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No, still not enough willpower to stop at 6!!

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What, Punnets?!!😁

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No - chocolates!!

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I did see a funny slogan a few weeks ago that said ," I am just trying to establish how many chocolates are too many , have eaten 23 and I'm still counting!"

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I don’t think I could manage that........but????

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Depends how big they are!!!

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If they are Ferrero Roche I can eat tons!

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Punnetts and bars sound more like my attempt at eating either of those separately.

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Men seem to need to be asked directly. Sad isn't it. If I was nearer, and not melting into the pillows on my daybed in the cabin, I'd bring some to you. 😊

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That's really kind of you , perhaps we could invest in some catapults , we might just be close enough to sling the odd bourbon cream across the Menai Straits!

Then again , if we had the energy to take part in that level of athleticism we probably wouldn't need the assistanceπŸ˜‚πŸ˜‚πŸ˜‚πŸ˜˜

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It would have to come over the Straits and part of the Carneddau mountains too. Do the power lines from Wylfa go anywhere near you? I've sometimes thought it would be good to make use of them. I could probably get from where we live to the other side of the Conwy Valley if I could fit a zip wire to them 😁

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Now you're as mad as she is . It's catching!

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I've always been mad, I just don't show it very often 😁

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Perhaps she caught it from you!

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Pretty close , I think we should give it a go!πŸ˜‚πŸ˜‚πŸ˜‚

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I'll work on it. Of course we might need to get the power switched off first 😁

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So who's knickers elastic are you going to use? There wouldn't be enough in yours!!

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I've got a good pair of running tights that might do the job , it's not like I'm going to be able to use them from anything near to running any time soonπŸ˜‚πŸ˜‚πŸ˜‚

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My knicker elastic is under stress and doesnt have much stretch left in it tbhxx

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My usual comment is d*** you PMR

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I don`t talk nicely to mine...at the moment it`s very choice language....but I feel a tinsy bit better afterwards...

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A study did find that swearing does relieve the sensation of pain.

Does anyone else develop PMR Tourettes syndrome? If I flare my language deteriorates significantly!

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I don't swear so much but my form of PMR Tourettes involves words of more than two syllables and some extremely cutting asides!

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My language is usually just above sewer level when I blow a gasket!!

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I will tell OH that....he never swears..but then thank goodness he doesn't have reason to.....I will carry on then!...

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My OH is a real prissy sort ...

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I love you Brains πŸ˜˜πŸ˜˜πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

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Mine doesnt swear either which annoys him when I do!! Sometimes I do it just to annoy him.

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Yes - all it needs is a "don't use that sort of language" ...

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🀣🀣🀣

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Well that was my excuse....but what can I blame now??πŸ˜‰

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You can say your swearing in sympathy and doing your bit for the cause!😘

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Think Bee has an answer ...

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Pretty sure swearing at your symptoms is one of the top remedies on the list of self care tips to help speed up your recovery! Have a top weekend x

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Thank you, and yourself....

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I'm sorry you are suffering Bee, you don't deserve this.

How long can you wait for the coffee and biscuits? It might take me a day or two to wobble that far. Must get Freya on the job!

I wish you a long and peaceful sleep to recover

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Don't worry , I just shouted that earlier at my symptoms ( which are your usual nonesense we sometimes have ) it made me giggle , so I thought I'd share it , in case anyone else fancied shouting it at their symptoms the next time they get the Deathly Fatigue.

With any luck they'll get a better response than me , I'm still waiting for my invisible illnesses to bring me that coffee!!πŸ˜‹πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜˜

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But does it WORK???????

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Give it a try and see !

I have not had any luck yet but we might need a bigger cohort of PMR / GCA members to take part to get any truly significant data!! πŸ˜‹πŸ˜‚πŸ˜‚πŸ˜‚

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We could design an experiment...

1/3rd of us will shout and swear

1/3rd will talk nicely to our pain

1/3rd will ignore it

Any bets as to which will be most effective?

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*#@@&****

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Lets face it scats we are unlikely to be able to wobble out of Sussex let alone get to wales!!

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I can barely make the end of the garden!

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Not a problem.....but you might regret the aftermath.πŸ’¨πŸ’¨πŸ€£πŸ˜‚πŸ€£

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I'm with you on that blearyeyed , I'm sure I get more sympathy from it than I get from the wife πŸ€”πŸ€—πŸ˜‹

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Ahh! But at least your wife might be willing to put the kettle on and bring you a biscuit , the Fatigue as yet has not been that generousπŸ˜‚πŸ˜‚πŸ˜‚

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Yes, I'm with you on that πŸ€—

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So not only are you as mad as a hatter but it would seem half the forum is as well.! Yay!!

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Yep , and we can't even blame the GCA/ PMR !!

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Why not? They get blamed for everything else!

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My madness is my own , I have to share enough with the PMR , I'm keeping my lunacy all to myself ( except for giving you all a scary peek in through the Asylum curtains of course!)πŸ‘―πŸ˜±πŸ˜°πŸ˜°πŸ˜œπŸ˜πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜˜

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I wonder if I need to speak to the research team looking for outcome criteria. Is this relevant to whether a treament works???

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If it's not we may have just invented a new area of study!

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I just told YB my husband came in a little while ago and walked straight up the stairs shouting that he was pooped after work and was going to go and have an hour's lie down.

He was that quick I didn't even have time to shout him.

So there's the proof that both Fatigue and your Family are no good at making you a cup of coffee!!

Luckily , the comments here have boosted my energy a bit and I may just manage to make it to the kettle myself .

PMR/ GCA Forum friends 1 Fatigue 0

Looks like we're beating it again chums!!πŸ™†πŸ™†πŸ™†πŸ’ƒ

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The problem is the cream! There are coffee makers like Nespresso and Krug that can make coffee from a pod and are not messy. You can have the machine next to your bed. For the cream--maybe one of those dorm refrigerators that is about a foot square, loaded with cream and chocolate, and heck, why not, macarons!

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Coffee in Germanic countries is always served with little UHT tubs of cream - they try to give it to me for tea, bleugh. But you can have it next to the coffee machine...

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Success!!!!

I have coffee and three of my daughter's homemade macarons so I'm sure I'm winning today!!

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Thank god for that because you would have a long wait for us to get there.

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And I thought you were going to use Goddess Freya Freight for an express delivery , good job I did manage to reach the kettle then , I even made a flask , just in case πŸ˜‹

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Well it depends on how fast freya and the chariot would get there but it still take time just getting on the damn thing. If I push scats up she would then have to pull me in!! Can you imagine the resulting hysterics!!

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Please provide video evidence on YouTube then we will all have something to watch when the Fatigue is getting us down . Chronic illness Comedy hour , as it could take that long for you to get in the wheels of fire!!πŸ˜‚πŸ˜‚πŸ˜‚

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That's a very optimistic view considering we would need to lie down due to the giggling

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Well done! I know that feeling of not having the energy to get to the kettle all too well. When I'm in the cabin it's only about 10 feet away too!

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I'm giving credit to the forum for giving me a boost of energy with the remedy of a little laughter , so well done to all of you xx

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As I start my day with tea and our Daily Digest, a big thank you all for the 'good craic' πŸ˜‚πŸ€£. A great way to start the day ... Hope you all have a positive weekend... 🌻

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It's definitely the best way to start the day , with a laugh instead of a frown , perhaps we should all add it to our breakfast prescription , you can even have it at the same time as the Pred!

Have a positive weekend xx

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It’s Wimbledon. Relax in a shaded room, put your feet up and enjoy - strawberries on one side, chocs on the other and a cool drink with a straw...πŸ˜€

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Oh Yes , that would have been the plans for the weekend even before the GCA !!

Of course , the post Wimbledon Party Games are bit above me just now , but I could always sit like a lines person , as long as I don't drop off to sleep over the blanket net!

Enjoy the Finals xxx

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Thank you so much for such a lovely giggly post! I have read bits out to my OH and have been laughing, not something that happens too often with all this rubbish that is going on with my body. He just went to the Post Office and asked if there was anything I wanted. Well, of course there is! A new body, if you don’t mind! I keep asking but nothing happens! Maybe I am asking for too much and I should just start with asking for a coffee and a choccy biscuit! Start small! Anyway, thank you to all of you for such an uplifting start to the day!

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Don't mention it , getting the uplifting support from everybody whom responded to the post yesterday was as therapeutic to me as it has been for you.

I even managed to raise up enough stamina to get my own coffee and a macaron after everyone's help , which was a good job as neither the Fatigue or my OH were being particularly forthcoming with a brew!!

PMR and all Chronic Illness definitely needs tackling with small steps , and as neither of us seem to be having much luck filling our orders for a new body at the Post Office or via Amazon , a little laughter and a welcome cuppa will just have to do for now.

Laughter is definitely the best medicine , and thankfully you can even take as much as you want while on Pred , so let's keep giggling our way to feeling that little bit better until we can put this high maintenance invisible friend to bed . Take care , xx

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You are so positive and cheerful! Thank you again! As you so rightly say, the fatigue as much as anything is so flipping debilitating isn’t it? I also loved the little dialogue with amazing PMRpro about swearing! So, that’s OK now! It’s all part of helping us to recover! Love it! What an amazing supportive lot the forum is, with snippets of useful information to help us all cope. You are all so helpful. You cheered me up no end!

Hope you have enjoyed your hard earned coffee and macaroon! I have just managed to make myself a small coffee too. Not sure about lunch though! Am having another little sit down!

Hope everyone has a reasonable weekend given that we are living with a very unhelpful β€œfriend”.

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well said! Hope you feel better soon!

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And the same wishes for you , have a positive weekend with a little health giving laughter along the way x

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I can reply?

😀

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You could be the last one , you could have the last word , as it's you , I don't want you to be steaming , it would not be good for you !! πŸ˜‹πŸ˜

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Sorry, thought it was the hug emoticon, not the steamed one. So tiny on my tablet. πŸ˜ƒ

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πŸ˜‚πŸ˜‚πŸ˜‚

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