Halloween: The Perfect time to add my new Profile Picture, and yes, I feel as "good" as it looks!!

[Blearyeyed]

Happy Halloween , Celestial Samhain , and Day of the Dead Salutations to all forum " fiends"!

I found this photo just before my birthday but thought that today would be the perfect day for me to upload it as my new "Self Portrait".

I took it about twelve years ago , at a Music Festival as I was heading back across the Children's Area to try and drag my daughters , Grandma and Eric, away from playing yet another round of the ," Egg and Sperm Race ", at the Science Tent .

( Oh yes folks, that was a real thing , and believe me , Me and Mr.Bee felt like we really paid our parental dues queueing for drinks in the Service Station on the way home . Imagine us, awkwardly responding with a weak smile to the disapproving looks of other adult customers after they looked down at our happy, smiling , grubby girls proudly sporting badges that said , " I'm a strong swimming sperm , Let me loose! " , and , " I'm a happy Ova , Fertilise Me!" . Umm, memorable Day)

As we crossed the field , I noticed that Mr. Bones had been taken down from his stand to lounge on a deckchair under a tree in the evening sunshine , a well earned rest after a day of prodding , shaking and poking before the Demons in White Coats could shut the tent and lay him down for a proper sleep.

I stopped in my tracks and smiled , took off my boy scout cap and sunglasses , placed them on his head , took out my camera , and, ' Snap!' It appealed to my sense of humour , and I suppose you could say it symbolised it . It never crossed my mind that before the age of 50 ( even though I already suffered from some of my Chronic Conditions) this photo of Mr. Bones could be an image that didn't just symbolise my sense of humour but ..... Me!!

Yet , here I am , 48 , and I feel as " good" as he looks!

GCA / PMR seems to have been the "tipping point" , adding extra burdens on an already overtaxed system , I just can't pretend that have I have the Energy anymore, my Get up and Go has definitely Got Up and Gone.

One Chronic Condition triggering another and then another . Taking so many different medications that if you shook me I would probably make a sound louder than a Maraca being played by a Day of the Dead Mariachi Band. Chronic Fatigue and a walk that would put a Zombie in ' Night of the Living Dead' to shame. Joints and Bones that clink and groan with more sincerity than Marley's Ghost and the circulation of Mina Harker after spending a week as the Special on Count Draculas Menu.

If the saying is true and , " You are as old as you feel", then I'm 102.

And not the 102 of a Clam Diver in Indonesia , or Mountain Climbing Yak Herder of Outer Mongolia.

No , more the 102 , of a Dickensian character called Mrs. Crotchety Polywobbles , whose lost all of her wits , half her teeth and lives behind the Privvy at the back of a dilapidated Workhouse.

GCA/ PMR , and their effects , on top of the other Chronic conditions in my ever growing house of cards , mean that, as technically speaking I am a Medical ' Zebra' I , literally, have a symptom or side effect for every letter of the Alphabet , apart from 'Q'. Although , if you allow me the colloquial term, queasy , or the psychologically draining symptom of quiet frustration I could tick that letter off as well.

In short , if I offered my body to Burke and Hare , or Dr. Frankenstein , in the name of furthering Medical Science , they'd probably give it back.

So , no trick or treating for me , tonight , I will be turning off my porch light to deter an endless line of Trick or Treaters , cuddling down under my duvet and wishing I could hunt down and exorcise the witch that cursed me.

Grandma , is still in the Halloween Spirit though , and despite having to take on many of the jobs I can't around the house she's still had time to create a simple crochet pattern for a mini pumpkin.

So , if you are thinking of learning to crochet , want to use it as Creative Therapy to get over the Chronic Illness Blues , or , if you want a PMR/ GCA Fatigue Friendly Halloween activity to do with the Children or Grandchildren so that you don't miss out on all the Fun , you can get the pattern free on ,

jellyllama.wixsite.com/jell...

And, as her recipe for Kale Chips was popular with our members before , and would make great crispy Virtually Carb and Fat Free Zombie coloured snack , anyone who missed it can find it there too.

Happy Halloween Forum Friends , and don't let the GCA ghouls and PMR Poltergeists bite!

Bedridden but not beaten, Auntie Bee xxx👻👻👻👻🎃🎃🎃🎃💀💀💀💀👹

Quick Update : I amended the link when Grandma finally arose from the grave!😋😂😂😂 It should pop you straight on the pumpkin page , Happy Halloween Hooking and Kale Crunching forum!

[powerwalk]

Don't know why I feel teary reading that, and laughing at be same time!! Love the pic! Feel better, with you in body and spirit! X

[Blearyeyed in reply to powerwalk]

That's the Power of PMR and Pred , every emotion at once and a virtually instant need to wobble for a wee as soon as you giggle!😋😂😂😂😘

[scats]

OK Mrs Pollywobbles your body is 102 but luckily for you your brain is much younger and still firing on all cylinders and as we all know the brain rules OK!

Don't wish to be rude, but you could do with eating a bit more of that pumpkin ice cream, you've been neglecting yourself of late!

[Blearyeyed in reply to scats]

I was just picturing the movie poster for the old black and white horror film , " The brain that would not die" , with a woman's head on a box strapped up to electrodes , thinking that could be a solution to all my ills , and then you reminded me of ice cream .

So I think I'll suffer a bit longer as long as I can have ice cream and pumpkin pie XXX😋😍

[scats in reply to Blearyeyed]

I've lost count of the number of times you've reminded me of ice cream when I've been trying not to think of it.

I see you've learnt that a good pair of shades hides a multitude of sins. Nice one!

[Blearyeyed in reply to scats]

Well I make the Future sound so bright , I have to wear shades!!😋😂😂😂😍😎

[SnazzyD]

I see the hamster face has improved but perhaps a little blusher on those cheeks darling?

[Blearyeyed in reply to SnazzyD]

😋😂😂😂😂😂👼

[Smokygirl]

Oh dearest Bee—— you are just a bairn ( as we say in the North East ) and far too young to have to have to battle with all this . Your sense of humour is wonderful and I am full of admiration for you.

Huge hugs & kisses 😘😘🤣🤣

[Blearyeyed in reply to Smokygirl]

A Bairn , not that you'd think so looking at my photo ! ( Giggle!)

Although , I do have the sense of humour of a ten year old , so perhaps Barmy Bairn fits me to a T.

Hugs xxx

[SheffieldJane]

Happy Halloween Bee! Thanks for the laugh. The low carb diet really works!

[Blearyeyed in reply to SheffieldJane]

Yes I put it all down to the Kale Chips and fact that with a body like that the food just seems to go through me!!😋😂😂😂😘

[Hidden]

I don't have half tbe stuff going off that you do but feeling at least 25yrs older than my biological age is standard. If there was a pile of fat and flesh in the next chair it's me. I want to turn my lights off but the youngsters next door have asked 3 times in past 2 week if I can look at them.

Feel better bee. 😘🍯

[Blearyeyed in reply to Hidden]

Just get them to pop to you first then switch those lights off.

I read an article about the Ehlers Danlos Syndrome that I have clearly had since birth although only recently diagnosed with.

It said that it was often the case with Connective Tissue Disorders that you can be at least 15 years older on the inside but actually look younger on the outside.

The GCA put pay to me looking younger than my age , but if I run with that theory my insides must be ( long pause to do mental arithmetic....) 63 years old.

Its not surprising that I have spent the last ten years gaining illnesses and having operations usually suffered by people older than myself.

It's certainly caused the odd raised eyebrow from visitors coming to the Hospital wards.

I suppose the one silver lining is that EDS has given me a reason for contracting GCA/ PMR and other issues earlier than the big 50 .

Oh, there wasn't a chair of Fat near by , but there was a paddling pool of very thick custard ( ??) , however I don't think that any if those things could ever be mistaken for you.

I'm imagining you as one of the Glitter Wrestling Festival Fairies instead xxx

[Hidden in reply to Blearyeyed]

😂😂😂

It's not good to have the conditions but it's good to have a narrative in your head that makes some sense of it..... Especially when you had your birthdays mixed up. 🤔😜

🧚🏻‍♀️🦸‍♀️

[Blearyeyed in reply to Hidden]

You would think I would have been adding years rather than taking them away with the way I feel lately , now that must have been wishful thinking!!😂😂😂😂

[Hidden in reply to Blearyeyed]

😂🤣😂 I am 58 but always say almost 60 and my neices go mad. We all have ways of deing with ageing. I used to feel 90. Now I feel around 75...whatever that is!

[Blearyeyed in reply to Hidden]

Oh, an improvement then , that's good news!! 😋😂😂😘😘😍

[Yellowbluebell]

I am late to the party due to pred induced insomnia but after looking at the state of you i was better off in my cave. There is no way i am partying with you if thats the result!!

Its all your fault i had to buy an icecream maker which has been in daily use since its arrival due to grandson trying out novelty tastes!! I can confirm carrot and strawberry ice cream is rubbish. Love and hugs my nutty friendxxx

[Blearyeyed in reply to Yellowbluebell]

Never in a million years did I believe that I would hear of an ice cream flavour I didn't think I'd try , but Strawberry and Carrot might be it !! Urck!😡😝😧😣😧

Grandma had some Halloween Black ice cream the other day but it was colouring .

I'm looking forward to getting over this bout of Pericarditis so that I can use some Black Sesame seeds I bought and make some ice cream from them , apparently it's Nutty Delicious , Pro might even like that one .

I hope the Family didn't drag too much of the woods back with them and you have a Fun Halloween , xxxx

[Yellowbluebell in reply to Blearyeyed]

They havnt returned from the woods yet but due any time now smelling like a bonfire!!. After OH put smokey footprints over cream lounge carpet just after we moved here they are made to strip off in the small hallway before being sent straight to the shower!! OH went dressed as Hagrid and grandson as Dobby the house elf!!

[Blearyeyed in reply to Yellowbluebell]

Do you think the Pred Insomnia is back with a vengeance or do you think you need to up the dose of your new pills again ?

[Yellowbluebell]

The new tablets are only at the starting dose at the moment and due to increase next week and also drop another amitriptyline. Gp was pretty certain i would need a high dose just to try and get sleep under control and then adjust to make sure depression controllled but not overly. I must admit i want to rush it and am still.resisting the temptation to just try max dose to see what happens!! Probably not the most sensible thought but i am so bloody tired i might just go in that direction!!

[Blearyeyed in reply to Yellowbluebell]

Yes , definitely don't do that , I tried it once and paid a horrible nauseous price , sickly sleep is and Sick Fatigue is the worst ever!!!

If you have started loosing the effect from it you may be better off asking the GP , or choosing to do the next step up in dose now , while on the same dose of Amytriptyline, then reducing the AmyT in a few days instead.

That usually works quite smoothly.

Tapering Up on drugs is very much like tapering down , you can't timetable completely you have to listen to the signs and symptoms the body gives you.

If the Insomnia is getting worse again its time to do the next increase and nip it in the bud.

Unless you are planning to wander the Halls like a Zombie tonight and scare the OH?😋😂

[Yellowbluebell]

I could terrify the neighbourhood kids and provide real Halloween frights tonight. The house should look spooky enought without me joining in!! Will speak to gp about speeding things up but to be honest shes really laid back about me adjusting things myself so i am sure she will.say no probs!!

[Blearyeyed in reply to Yellowbluebell]

I was given the same drug as the next option to try ( not that I need it just now the new heart drug , infections and 2 steroids to deal with it have knocked me off my feet) So , I'll be very interested in how well you get on with it and what the side effects are.

A lot of people either have intolerance issues when they start Amytriptyline or become Desensitized to it even if they are on high doses after being on it for some time so this might be a possible solution for many on the forum with the Pred Insomnia Tortures and Depression.

Have you had any weird dreams , that is listed as a side effect on the box ?

[Yellowbluebell]

Strangely enough i only got weird dreams if i missed amitriptyline !! definitely became desensitised to amitriptyline because of being on it for over a decade and on a high dose, 150mg!! I am also thinking being on it has contributed to my weight gain. I looked back at my weight gain and realised that although i have put it on quicker since the start of pred i had actually put on about 2 stone over the last couple of years before pred.

[Blearyeyed in reply to Yellowbluebell]

That might have also had to do with the amount of times you have had to reduce physical activity when you were suffering from the different shoulder issues and injuries as well.

You could find after the initially tinkering with your night time medications that you benefit from a high dose of the Mirtazapine and a minimum dose of AmyT to make sure you don't get side effects that reduce the benefits of the new drug.

Tell you GP about it , it might help them decide how to create a combo of drugs that works for insomnia for other patients in the future too.

[Yellowbluebell in reply to Blearyeyed]

I am lucky as my gp is really good and also quite happy for me to manage pmr myself plus shes advising other patients to join the forum as wellx

[Louisepenygraig]

I'm late to the party too so Happy Samhain! I know it's good to lose weight but don't you think you might have taken it just a bit too far? 🤣🤣🤣

You do a good job of cheering us all up in spite of all your ailments! I'm trying to think of some witty things to say but I'm still waking up so brain not in gear yet - of course no guarantee that it will be later but one can always hope. 😁

[Blearyeyed in reply to Louisepenygraig]

That was witty enough , I'm the same most days my brain hasn't woken up bedtime .

I was wondering how you were after your big trip .

I hope the weather isn't getting you down , I know it makes a difference.

I hope you are feeling Happy in yourself , big hugs xxx

[Louisepenygraig in reply to Blearyeyed]

I'm doing quite well right now, feeling cautiously optimistic, down to 9.75 on my way to 9.5. Overdone things today so just collapsed into bed! Hugs to you too

[Blearyeyed in reply to Louisepenygraig]

Nice to hear that things are improving for you , just try to pace yourself and things should keep looking up. Take Care and Keep Warm xxx