Aunty Bees Advent Calendar. Dec 9. The one thing ... - PMRGCAuk

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Aunty Bees Advent Calendar. Dec 9. The one thing 'NOT' to cross off your Christmas 'To Do' List , those Medical Appointments.

Blearyeyed profile image
Blearyeyed
β€’70 Replies

Before I get a bit Mumsy on today's Post , I thought I might indulge in my first Christmas Cracker joke. Groans abound . Hard Luck , here it comes ....

How do Penguins commute to work?

B- ICICLE !

Yes , I know πŸ˜‹πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

But now to a quick Mumsy word of advice .

I was thinking of passing this on the other day after our most observant Disease Experience Expert , PMRPro gave a comment in a post a few days ago about the amount of Appointments that are cancelled by Patients in the week before and during Christmas .

Karma decided it would add into the argument for a comment on it today when I went to my Physio Appointment and saw a few people in the queue asking why they hadn't received appointments but then declining the available ones until well into January because they had other Christmas things on . The same declines were being offered by Patients on the phone when the Receptionist offered up an appointment at 8.30 am on Christmas Eve or New Year's Eve at Midday.

So , I was not suprised when my wonderful Physio , looked on his list and said ,

" Oh, No , you really won't want to take this one ."

I pipped in , " Is it Xmas Eve at 8.30?"

" Yes , how did you know , it's that or the first week in January!"

" I'll take it !" I said , " It's more important than anything else I have to do that day . "

He was very impressed with my commitment ( Gold Star for Aunty Bee ) but as I said to him as I left , " It's the 'Must Do's' and 'Have To's' you cancel from your list , not the ' 'Need to's' and 'Want To's'."

He liked that and said he was going to use it in future to describe what he expected people to do in future when explaining Pacing to his more , in his words , ' Stubborn Headed Clients'.

I walked away , knowing that if I didn't want to suffer more Pain at Christmas this was something I had to do , even if I know I will have to be up at 5.45 am if I'm going to manage it.

I came out and told Mr. Bee , " Oh No , Christmas Eve ," he whined , " Do you have to?"

" Yes , unfortunately Pain doesn't take a break and PMR/ GCA doesn't recognise Public Holidays."

He had a 'lightbulb moment' and his reluctance was gone with a smile.

It's true , Coping with Chronic Illness often feels like a full time job , but unlike a Real Employer it doesn't recognise High Days and Holidays. Chronic Health issues need you to do your bit everyday to help you cope with them and stop them getting worse.

And if that means crossing off something else on your list , and this is were I get a bit like your Mum, it's something you really need to do.

So , keeping those appointments , even if they clash with your Christmas Plans , is still important.

If your Physio ties with little Johnnie's Nativity Play , Mr. Stretch Bones has to win.

If you get offered a last minute date from a Specialist or Test Clinic but planned to leave town that day , unless it's a pre-booked holiday or long distance travel plans with a ticket that can't be changed , it will be better for your Christmas Holiday , and especially for You , if you attend that day , and travel a little later instead.

Drop the Lunch , Ditch the Concert , Dispose of the Preparation Plans and head to the Doctor instead. Because otherwise you may not see another chance until well into January.

The silver lining , of course , if you are feeling anxious about getting those tests or receiving treatment and results , you can get all that off your Mind and be able to Concentrate on the Joy of the Holidays instead of worrying about what comes next.

And a Top Tip , if you are waiting to get an appointment have not heard about one , and are convinced you won't be seen until January , try ringing your Doctor or Clinic Department and see if they have a cancellation available.

If they don't , request politely if they can include you on their cancellation list and add a note to your notes saying you will take a last minute cancellation when one becomes available. It really could mean that you get seen before you say "So Long" to Santa.

The awkward Christmas Medical Appointment is in fact a gift given to you by the NHS .

Even Auntie Bee took her own advice and will be being Manipulated for Christmas Eve , just hoping Mr. Stretchbones won't sing Christmas ditties at me while he does it !

Take care , and do keep those appointments if you are well enough to do it.

Big hugs and tender loving Care , for today , Mummy Bee xx

Today's photo may not be very Christmassy , but seemed appropriate to the theme and was kindly donated again by the girl you know as Grandma.

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Blearyeyed profile image
Blearyeyed
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70 Replies
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It is a pain but I agree get things done that need seeing to. I have full spine MRI tomorrow, physio weds, rheumy on the 16th and a colonoscopy on the 30th. Given I have a week on low residue diet and then a 5day prep plan because the last one didn't work, my food consumption at Xmas will be monitored. But I didn't want any of them hanging over me for weeks or months. Then I have physio 12th January. I am hoping to have a gap then, apart from physio, as I seem to have been going from appt to appt for 3 months.

Blearyeyed profile image
Blearyeyedβ€’ in reply to

That's it and you can celebrate Xmas in January instead with far less on your mind and the possibility of enjoying a mince pie . The Real Christmas and Winter Festival doesn't actually finish until 2 nd February , so you could be like Me and the Queen , and still have your decorations up until then. Gives you just about enough rest after putting the decorations up before you have to take them down again as well.πŸ˜‹πŸ˜πŸ˜‚πŸ˜‚πŸ˜˜

β€’ in reply toBlearyeyed

I just leave the lights at the window... πŸŽ„

Blearyeyed profile image
Blearyeyedβ€’ in reply to

I don't put lights at the window , I'm on the flight path of RAF Valley and scared I might get mistaken for a good spot to land on by lost planes!πŸ˜‹πŸ˜‚πŸ˜‚πŸ˜‚

β€’ in reply toBlearyeyed

πŸ€£πŸ˜‚πŸ€£

Yellowbluebell profile image
Yellowbluebellβ€’ in reply toBlearyeyed

My bedroom lights are like that. Always scared if i put them on a plane may think its ready to land at gatwick. Would get mr bluebell to change to lower watt bulbs but that involves him who cant climb anymore getting on the bed and trying to change them between bounces.

Blearyeyed profile image
Blearyeyedβ€’ in reply toYellowbluebell

πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜˜

Thelmarina profile image
Thelmarinaβ€’ in reply toYellowbluebell

πŸ˜‚πŸ˜‚πŸ˜‚

Cyclegirl54 profile image
Cyclegirl54β€’ in reply toBlearyeyed

πŸ˜‚πŸ˜‚

Pixix profile image
Pixixβ€’ in reply to

Hope it all goes well. I find it hard to keep still for the full spinal MRI, but I only have a haemangioma at the bottom end-ish, so could be worse. Don’t envy you the colonoscopy and that is bad timing, but shows you have your priorities right!

β€’ in reply toPixix

Yes. I found it was staying still that was the main issue. I don't think I can have a pillow under my knees which at least stops the quivering. The results were a bit blurry but the prolapsed disc was massively obvious so it didn't matter. I plan to have a mince pie this week or next and Xmas cake after the holidays.

Blearyeyed profile image
Blearyeyedβ€’ in reply to

You have had a colonoscopy or two before I assume?

β€’ in reply toBlearyeyed

Yes one about 8 weeks ago. Prep didn't work.

Blearyeyed profile image
Blearyeyedβ€’ in reply to

Were you in pain afterwards though or did you find that it was ok?

It's definitely worth having the local anaesthetic and for one , because I have a narrow colon ( with corners!) they gave me a quick general.

The pain afterwards , for Me , definitely wasn't half as bad as I imagined and as long as I took it carefully didn't send up those Flares!

β€’ in reply toBlearyeyed

I just had 2 or 3 burst on gas and air. It was a little like medium period pain and it was weird the day after just thinking I had a camera inside my body. I am hoping for the same or easier still when they don't have to try and spray wash my bowel! πŸ‘©β€πŸŽ¨

I can't actually see what the emoji is but it looked vaguely right.

Blearyeyed profile image
Blearyeyedβ€’ in reply to

Yes ,exactly , in fact the way my gynae issues were it was a lot lighter than period pain , just a feeling of being a bit uncomfortable an a bit full.

I had the intensive clean after them discovering that the usual cleaning out drinks weren't doing anything ( they could have used that as diagnosis of Dysmotility alone really , especially after having six packs for one appointment before finally having the big wash !) It's the corners that they worry about how though , they want to get good shots but don't want me to get pain while they do it.

β€’ in reply toBlearyeyed

Oh gawd, I do hope this one works. I have actually been trying to clear things up. I am convinced there are motility issues. I know my bowel movements can occur less once a week. I am trying to implement low residue diet but I love my seeded bread even once a week. My favourites are all high fibre but I had to give it up. I will be eating beige food as far as possible and using prescribed laxatives to keep things moving. Its sennamax tbey say to usefor 3days (but it never works for me.... It sticks around for 5 days then it explodes. 😜) 4 litres of movicol for 2 days then whatever dosage they decide for kleanprep for day before. My sister is glad I am returning home for most of it. πŸ’₯πŸ’¨πŸ’₯πŸ’¨πŸ’₯πŸ’¨πŸ’₯

Blearyeyed profile image
Blearyeyedβ€’ in reply to

I didn't find those laxatives worked either for Dysmotility , it just started to feel more tight and more bloated. I get Laxido ( similar to the stuff before a Colonoscopy ) on prescription but also can cause the same problem , the most effective for me , especially if used early is Lactulose solution .

I don't know whether as a Diabetic you are allowed the short burst of sugar in it to quicken the solution . My OH has had it on occasion but he usually manages with the higher dose of Andrews Liver Salts and then only has to have one dose of Lactulose as a last resort because of the sugar.

Buscopan or Dulcoease seems to help more than things like Senna if it is a Bowel Muscle or Nerve issue . Otherwise you can find eventually things swing the other way for one horrible toilet day.

I know what you mean about having to virtually give up all those insoluble fibre foods , it's so disappointing when you have to restrict so much in your diet already.

β€’ in reply toBlearyeyed

I will try the buscopan again. Prescribed bisacodyl works if I take on a morning but not on a night. I am just trying for as empty as possible with no nuts or seeds which covered 50%of the bowel surface in " viscous material" that couldn't be washed off.

Yellowbluebell profile image
Yellowbluebellβ€’ in reply to

Its a painter poops!!

Yellowbluebell profile image
Yellowbluebellβ€’ in reply toBlearyeyed

We automatically get put under for colonoscopy here. Not full anaesthetic but enough so you dont know its going on!!

β€’ in reply toYellowbluebell

They put a cannula in in case somethong needed to relax me but it was OK. I am expecting pain this time because its sods law.

PMRpro profile image
PMRproAmbassadorβ€’ in reply toYellowbluebell

Not even pain relief until it turns out to be required here! It does mean that an operator who is chatting to his patient is going to be a LOT more careful about movements of the scope and it does seem to reduce perforations which were as a result of a gung-ho arrempt to negotiate the corners ...

Pixix profile image
Pixixβ€’ in reply to

I was able to have a pillow under my knees until last ten minutes. It made the pain more bearable for sure. Prolapsed disc is naff to understate it! I stopped my keto diet today and I’m having my first mince pie this evening...I’ve switched to the 5:2 diet for 3 weeks, then back to low carbs. Christmas cake will keep well until you can eat it.

Blearyeyed profile image
Blearyeyedβ€’ in reply toPixix

That's a really good tip Pixix , thanks for that.

I will remember that , they sometimes forget that just because you can't have support for one part of any of the tests it doesn't mean that you have to have no support all the way through it . It could definitely reduce the Pain afterwards.

β€’ in reply toBlearyeyed

Yes I know the day after will be hard especially as the physio will be joining in the next morning!

Blearyeyed profile image
Blearyeyedβ€’ in reply to

Let the physio know what you did the day before and ask for a lighter session only concentrating on areas that don't affect that part of your body as well , and hopefully it won't cause you as much Fatigue. If you really aren't up to it just stop and ask to have a discussion appointment instead getting advice for things to do over the month . It might help x

β€’ in reply toBlearyeyed

I think it will be mainly discussion as my first appoint with him. The one who did my initial session said she thought he would be a good fit.

Blearyeyed profile image
Blearyeyedβ€’ in reply to

Yes , you definitely shouldn't do any exercises and just a few smaller mobility tests on the initial booking , if they try to push you to anything else they are definitely not the ' right fit '. Also , be aware that if they aren't Pain / Fibro Specialists as well as Rheumy Physios you might need to try another one.

You can usually tell if they aren't going to help much if you tell them what you have got and then they give you the same ' one size fits all' 10 exercise sheet. My guy gave me no exercise at first , then Hydro sessions , then he teaches me one new thing a week or fortnight after I discuss how well I do. The less is more and manipulation approach is starting to pay off.

Pixix profile image
Pixixβ€’ in reply toBlearyeyed

Exactly right. I think there was only two parts of the scan which meant removing the pillow, much easier to do ten mins without than suffer the whole! Worth asking!

β€’ in reply toPixix

Thanks i will ask then to do that if its possible. I am hoping its not more surgery. 😜

Blearyeyed profile image
Blearyeyedβ€’ in reply to

Us too , Poops , Good Luck!😘😘😘😘😍

β€’ in reply toBlearyeyed

Thank you😘

Thelmarina profile image
Thelmarinaβ€’ in reply to

More time to add brandy to the cake, the maturer the better and the more sensual delights to enjoy! 😘

β€’ in reply toThelmarina

It'll be the cheese that tops it off for me.

Thelmarina profile image
Thelmarinaβ€’ in reply to

Have you tried Godminster Cheddar - creamy, tangy, voluptuously delicious πŸ˜‹

β€’ in reply toThelmarina

Yum yum... I will look out for it. Just reintroducing dairy so sticking to riper cheese but Xmas cake isn't right without cheddar.

Highlandtiger profile image
Highlandtigerβ€’ in reply to

Xmas cake with cheddar? What fresh heIl is this?? 😱

β€’ in reply toHighlandtiger

It's delicious. A lot of it in Yorkshire but not sure how far it travelled. A nice slice of cake without icing or marzipan and put a nice big slice or two of cheddar and eat... Sounds disgusting but is lovely. πŸ§€

Highlandtiger profile image
Highlandtigerβ€’ in reply to

At least there’s no marzipan! πŸ‘

β€’ in reply toHighlandtiger

Oh no yuk... Worse than PMR πŸ˜‰

Blearyeyed profile image
Blearyeyedβ€’ in reply to

Yep , but I like the crunchy royal icing . I used to spend ages trying to sheet the marzipan layer out of the middle to hide it in a tissue so I could have a slice when I was little as my Mum wouldn't let you have any unless you are it all.

Isn't cake without the icing just basically like a Dundee Cake ( with the nuts and cherries on ) , I might have a little cheese with that , but usually it's white stilton with apricots and cranberries.

I've never hidden a bit of cheese in a mince pie before , I favour brandy or rum butter.

β€’ in reply toBlearyeyed

No. I think Xmas cake is much richer and more moist if its done right. I have over the years tried different fruit cakes but non of them like Xmas cake, especially home made. Like ginger cake isn't parkin.

PMRpro profile image
PMRproAmbassadorβ€’ in reply toBlearyeyed

Depends on the recipe used I suppose. I only want the sort that are absolutely black ...

Tesco's gluten-free xmas cake is wonderful - only came in smal chunks last year, OH's cousin and husband come skiing in January usually and bring me some. OTOH, here it is possible to get Zelten made with rye flour (not that there is much flour in it!) which I can eat and it is nearly as good as xmas cake. Further south into Italy it seems to be made a bit lighter - more like a Dundee cake. It is strange how if you look at traditional midwinter sweet stuff there are distinct threads all across the world.

redrooster.it/en/farm-bars/...

PMRpro profile image
PMRproAmbassadorβ€’ in reply toHighlandtiger

Mince pies too - remove the lid and replace it with a slice of good cheese, a mature Red Leicester is good. Waitrose have a wonderful RL - other makes are available...

Cheese and Black Bun is good too ;)

β€’ in reply toPMRpro

Yum... What is black bun?

Highlandtiger profile image
Highlandtigerβ€’ in reply to

Traditional treat at Hogmanay!

β€’ in reply toHighlandtiger

I wl have to try some...

PMRpro profile image
PMRproAmbassadorβ€’ in reply to

A very dark xmas cake in a pastry case - native of Scotland!

Highlandtiger profile image
Highlandtigerβ€’ in reply toPMRpro

Nearest Waitrose is 160 miles away but I’m sure I can find some somewhere else. πŸ˜‚

I can honestly say I’ve never heard of anyone eating Xmas cake, mince pies or black bun with cheese. Maybe it’s geographical or maybe I’ve just led a sheltered life? You certainly learn something new every day on here!

PMRpro profile image
PMRproAmbassadorβ€’ in reply toHighlandtiger

As Poops says I think it is possibly from Yorkshire but I grew up on the Welsh Borders and we added cheese to xmas cake - and apple pies...

So you know me, I looked it up:

thecourtyarddairy.co.uk/blo...

And since I'd never heard of Blackburn cake I looked at that too - stewed apples instead of currants as in an Eccles cake. So the cheese and apple pie link again.

β€’ in reply toPMRpro

Now I don't know whether to have Wensleydale with the cake.... I haven't met many from outside Yorkshire who have it.

PMRpro profile image
PMRproAmbassadorβ€’ in reply to

I don't have the luxury of choice - Cheddar or Red Leicester or Stilton. The RL is nice and crumbly which surprised me, usually it is sort of generic Irish stuff - Kerrygold have cornered a big European market but it is improving, Wyke have got in too. Hope that lasts ...

Blearyeyed profile image
Blearyeyedβ€’ in reply to

Me , because it's not so tangy , and I Iove Wallace and Gromit. By the way , My next door neighbours house has just gone on fire , fire engine is here according to Grandma , nobody has stood us to evacuate yet , should I get dressed?

Grandma has gone to look , we are semi detached .

You can tell you have PMR when you house could go on fire and not getting up is still an option!😟

Meggsy profile image
Meggsyβ€’ in reply toBlearyeyed

That’s really funny! πŸ˜‚πŸ˜‚πŸ˜‚

Meggsy profile image
Meggsyβ€’ in reply toBlearyeyed

Sorry - I didn’t mean the house on fire was funny.

Blearyeyed profile image
Blearyeyedβ€’ in reply toMeggsy

No seriously it was meant to be funny , when I asked my daughter to go out and check what was going on and she came back and I was still considering staying in bed I said it to her and we laughed while it was happening. Sometimes it helps to see the funny side in the worst moments. Glad it made you giggle , I did.

Highlandtiger profile image
Highlandtigerβ€’ in reply toPMRpro

Thanks. That’s really interesting. I might just give it a try. Every day is a school day! πŸ˜ƒ

SheffieldJane profile image
SheffieldJaneβ€’ in reply to

Oh argh! Sweetheart. Sending you all the loves. β™₯οΈπŸ’•πŸŒΈβ™₯️

β€’ in reply toSheffieldJane

Thanks jane πŸ˜‰

alvertta profile image
alverttaβ€’ in reply to

I had a heartMRI in October. Looking for possible aneurysm. None found. πŸ™ As soon as I got in the machine my nose got itchy. Yikes. Nooo way to scratch. I had to do Zen. πŸ˜‚

Blearyeyed profile image
Blearyeyedβ€’ in reply toalvertta

It's always the way , you can lay still all day then you get in those machines and everything wants to itch or fidget.

alvertta profile image
alverttaβ€’ in reply toBlearyeyed

Exactly. I laughed. As I never have an itchy nose.

scats profile image
scats

I'd prepare yourself for christmas music. I did my physio to the assistant's christmas cd while she danced to it last Friday. It was more fun than usual!

Blearyeyed profile image
Blearyeyedβ€’ in reply toscats

There was music on today , but he was humming and actually threatened me with a bit of bad singing on Christmas Eve , he also promised he would dress festively if I would . I had one of my Chrustmas Jumpers with Chewbacca holding up a gift shouting , " Socks Again!!!" on today. Looks like I'm getting the Elf Costume out for Christmas Eve , that will teach him!

Jackoh profile image
Jackoh

This has prompted me Bea to ring about an appointment for sleep apnoea. The appointment wasn’t until March next year and now they have just written to say it is postponed indefinitely!!

Blearyeyed profile image
Blearyeyedβ€’ in reply toJackoh

Definitely get on it , they do that to promote a Call of complaint from you to show you still need it , tell them it's still bad and getting worse and you would be happy to take a last minute cancellation if they will add that in the system but you definitely need help soon, also mention the PMR and your other health issues it makes a difference with the Sleep Clinic. Let us know how you get on

Jackoh profile image
Jackoh

πŸ‘xx

singingloud profile image
singingloud

I’m seeing the eye surgeon on New Year’s Eve unless they squeeze me in this Thursday. These cataracts are in need of fixing!

Blearyeyed profile image
Blearyeyedβ€’ in reply tosingingloud

I am wishing you lots of luck and , if you will pardon the terrible pun. , I hope you will be " seeing in the New Year " in a whole new way. Hope that raised a smile , Take care x

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