Chronic pain Cafe - support thread #3 All Welcome

[Akire]

New shiny thread to get us through December & Xmas and possible New Year!

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living with it. Everyone is very welcome

Back to work tomorrow after my broken wrist.
Now I've got cast off the docs will let me drive so back I go..... wretched brace the hospital gave me to wear for the next 4 weeks drives me mad..... itches and gives me a rash grrr
Oh well 3 more weeks of it...
Positive note - be nice to be back and see people again and be on full pay... SSP sucks

Good luck @SpamandSparkle hooray for more money eh. And anyone else going back work or routines today and dragging kids up at reasonable hour. I’m up early got my jab at 10! Whooohoooo

@OneNightTimeMenaceStrikesBack

i have to write things down or i forget everything, my short term memory is shockingly bad. I have a lovely pen pot full of nice pens and a white cat thingy that dispenses post it notes :D

Literally ALL of my stationery is cat themed 😂😂

I've been up since 6 with the kids. They're all in school so I think I'll have a nap

i woke up at 5am screaming after a nightmare and have been awake ever since, hoping to get a decent nap this afternoon. took ages for the adrenaline to subside after the nightmare so im still up now instead of in bed like i normally would be at this sort of time int he morning. im not usually an early riser unless ive had a bad night

@OneNightTimeMenaceStrikesBack

i woke up at 5am screaming after a nightmare and have been awake ever since, hoping to get a decent nap this afternoon. took ages for the adrenaline to subside after the nightmare so im still up now instead of in bed like i normally would be at this sort of time int he morning. im not usually an early riser unless ive had a bad night

Not the best way start the day hope you get some Kip now

Just back from booster jab got soaked. Another demoralising experience I know many are volunteers but it’s also trained staff. Treat you like your stupid or an infant. The patting like you are a dog over and over, I’m not nervous it’s not that REAssuring in facts it’s very annoying, can you ask her”I’m here right next to you the wheelchair doesn’t make me deaf or stupid. The fussing oh I have to check extra fuss like I can’t turn up alone. Then on way out lady pointing left but as it tight bend I have to turn chair slightly to right to get room for swing starts no no this way

Then after great fuss opening double fire door exits so I could get out (dont get me started that should be unlocked and released at all times so you can push bar and open door you dont have time in fire wait everyone else to escape then mess around with levels and pins for second door)

Then volunteer says “can you manage?” What to go through door, mmmm I think so. She told me having The M jab and yet leaflet says Pifzer so no idea if they flustered in dealing with me gave me wrong leaflet. But it’s typical of the dealing with disabled people. Every time instead of being positive experience I’ve come away feeling all depressed. You can see other adults around you getting treated in normal way it’s not just “a chip on my shoulder”, think when you spent more years of your life non disabled it’s clear as day when you get spoken and treated differently.

Fingers crossed no major side effects for next few days.

Morning all

@SpookyScarySkeletons oh gosh, I did that a few years ago. It was fabulous to read out the little notes at the end of the year. Some I remembered, but a lot of stuff I had totally forgotten. Mainly small, but really important achievements by DD. I'm also a major list keeper.

@Akire oh my goodness, what an absolute nightmare that sounded for you. At least it is done now and I hope you can relax a little. I had Pfizer booster and only had sore arm for couple days. Fingers crossed for you.

I'm pretty proud of myself today. DD had 2 hour meltdown last night and another going into school. All usual coping mechanisms seem to go out of the window and we have to start afresh after every school holiday. She described her anxiety today as a feeling of 'pure terror'. After getting her into the classroom, I had a blub at the headmistress. Then came home and rang school nurse. DD will see nurse tomorrow and i will see the nurse next week to go through the beginning stages of ASD assessment. I then referred myself for Therapy and my first session is later this month. DD and I promised we would put ourselves first in 2022 and I'm bloody determined to keep that promise.

Well done on starting that long road it’s no mean feat. You have to be so pushy to get anywhere I really think chronically Sick people should have classes!

Feeling calmer now just upsets me, I know I’m going be disappointed but I’m an optimist at heart.

New diary/planner comes this afn so something look forward too.

Akire that's bloody awful, although not surprising. Hope you're not too knocked out by the side effects.

I just got back from a wonderful weekend away to find that my new flatmates have moved my food in the kitchen from two shelves onto one. It did look quite spread out, but a) I was away so obviously didn't have as much food there as usual, and b) my adhd means that if I can't see everything I have, I'll just forget to eat it. It's not like the kitchen is low on storage either....

That’s annoying are you going move it all back? Flat mate shouldn’t be moving your stuff. I hated sharing I was lucky in that got a housing association flat as I become disabled or I still be paying loads to live in someone else spare bedroom at nearly 50.

I can't move it back because they've filled the space...also they're my landlord's relatives so I have to be polite. However I did find a bit of cupboard space they hadn't filled and put some stuff in there. I'm annoyed because the flat was advertised as a flatshare for adults, and now a family of three with a little girl have moved in. So instead of a flatshare where people were mostly considerate about not monopolising the common areas, it's now a family home with me living in the spare bedroom. Wouldn't matter so much if I didn't have to spend so much time here.

Oh no that’s awful. I lived in lots houses shared strangers but was harder with landlord living there. Always felt stuck to your room even if were “shared” areas. You are still young enough for shared rate housing benefit aren’t you?

Arm quiet sore now so have on massive hoodie that practically will fall off if I need it.

Unrelated moan but I'm finding it tricky to navigate public transport with my rollator. Here there aren't fold down seats in the wheelchair area of the bus, so I can't sit and have it in the space, and it's so bulky. I get embarrassed if I get in the way. The worst is when I get on the bus/ train/ whatever and people in the priority seats just sit and look at me, like they've realised I need to sit down, but won't actually get up until I ask. (I know they could have invisible disabilities, but not all of them I shouldn't think...) I find the whole thing very embarrassing, especially when my brain fog and autistic non-speaking elements interact and I find myself unable to string a sentence together to ask. FFS just get up!

Sorry Akire didn't see your post, going to clog up the thread now sorry! I'm not in the UK atm so housing benefit is a moot point, and when I get back I'll be in subsidised uni accommodation again, however I will be applying for PIP etc when I return. Enormous hoodie sounds comfy, is the sore arm from the jab?
I'm paying the price painwise for my weekend away now, but it was so worth it! I got to borrow a wheelchair at one museum, which made me realise one would actually be useful...I've found myself gazing longingly at elderly men, or rather their wheelchairs

That’s tricky so just the one seat you can really use? What about a card or badge you can wave to say you need priority seating? Etsy usually has few sort things if you don’t feel up to asking.

I have speech problems so use cards a lot when it’s not suitable be digging around for my phone. Stickman communications do good range and lots of autistic related ones.

here

Uni accommodation sounds promising and much more suitable. Yes arm from jab so far so good.

Good idea re the cards, I have a set of stickman cards in English to the back of which I've stuck Spanish translations. I haven't really used them though because autism etc is much less accepted/ there is much lower awareness here, and I'm alone in a different country and very much aware I already present a target for crime etc. I could get a "please offer me a seat" pin for my rollator.

Definitely get something for the rollator to show you need a seat. It's not on that people are just sitting there. I've never had that problem luckily, not that I use pu lic transport often.

People just assume I’m Deaf when use the cards. Saw my neighbour today on way out he always mines talking and as I can’t lip read I just nod. But had my cards to hand so flashes him the I’m not deaf I use a communication aid to speak card. He said oh they fixed your hearing that’s great fist bump didn’t have time explain never been deaf they just assumed!!

@bicyclesaredeathtraps giggling at you gazing longingly at elderly men 😂😂

Yea yes yes to the giant fleece hoodie. I bought my teens one each after seeing people mentioning them on MN. They were both over the moon, amazed I knew what they are (cos obv I'm positively ancient at 37) and neither has removed them since Christmas morning 😂😂

My oldest has an oodie that @OneNightTimeMenaceStrikesBack bought him. He rarely takes it off in the house!

I’ve got two! Help with keeping warm minus blanket at night and of course heating bills. Fake ones of course but very well done.

Talking about the oodies and also (don't think it's been mentioned) weighted blankets. Just goes to show how different we all are. I cannot stand heat / the feeling of being suffocated by a thick and fluffy garment. Can't bear a weighted blanket as I also feel suffocated.

Hugs to you all (even though I hate being hugged)

I love my weighted blanket. I like to be squished