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

Yes have ordered one said tomorrow or day after! So be late Friday or Saturday morning before I find out by which time be on day 5/6.

How long take you go from sore throat to feeling rubbish?

Maybe a day? But then was only really really poorly for a few days in the middle, the rest was just like a normal cold x

It will be with you by tomorrow morning I reckon. We've done a few recently and it's always been with us by the next day. Even when I've ordered on a Saturday Royal Mail were at the door 8am Sunday morning!

Last time did one only post it in one post box and that had to be by 6/7 pm for last pick up so couldn’t do it morning and then drop off. Which pain as by then I’m on last legs on normal day.

If count minor sore throat as Monday today is day 3 so dont feel much rubbish than normal. But not counting chickens yet.

I can’t speak on phone so no idea any option for track n trace for deaf or people speech difficulties guess I just have block them as never seen anywhere any option to say text only or anything.

Thats a good point @Akire I don't know how they work for people with hearing or speech difficulties. I ended up blocking them in the end as they phoned me every 2 days to make sure I was still isolating. I just wanted to curl up in a ball and get better not fuck about answering a phone call constantly.

Did find story where deaf lady had ticked text only but the “service wasn’t available” so sounds very familiar! Worse can happen is send someone around to check hey ho. Same every single organisation they not let you proceed any contact forms unless you put a number but never any option to say but I can’t answer. It’s beyond in 2021 especially when least 4 gender options choose so invested money in developing that page. Sigh

@Akire it's ridiculous that people's needs aren't taken into consideration. As you said its 2021, you'd think by now disabled people would be accepted and have their needs met by default instead of having to fight for them constantly.

[quote HerRoyalHappiness]@Akire it's ridiculous that people's needs aren't taken into consideration. As you said its 2021, you'd think by now disabled people would be accepted and have their needs met by default instead of having to fight for them constantly.[/quote]
Yes, It is ridiculous that I pass loads of painted pride crossing cost the council £££ when I drive around to my local city. Not even sure if they are zebra crossings or light operated crossing, as pride colour road crossing are not in my high way code book!

These road crossings don't help disabled people and clearly confuse people, so why spend the money for no actual benefit.

Yet so many places are not wheelchair accessible or have no hearing loops or worst still broken hearing loops, no council money for that help though.

I know I make comparison all time but argument is usually “be kind” and not to put one disadvantage group against another but one group has millions pound funding and power other group v little. I’n pride history month half Twitter change logos including banks supermarkets argos loads programme on TV. Rainbow flag over everything etc yet we are half way through Disability history month not heard peep anywhere. Not even any programmes on BBC4, no comments here that their child has come home school leaving about disability history.

I know Disabled people in their 50/60/70s now who spent their whole life being told be patient things will get better but can’t see it happening my life time. It’s not cool sadly. If I get bugger all service it’s shrug shoulders.

It’s interesting in the whole mask/refuse service argument. It would be reasonable for shop to say no mask no Entry but offer door to pavement service say if you couldn’t do a service online. But no that’s unacceptable yet I’ve often have to be served from
Pavement and instead of being sheepish and sorry you often get rubbish service or ignore you complete when you knock on the window!

These road crossings don't help disabled people and clearly confuse people, so why spend the money for no actual benefit.

Theyre dangerous too. I know a blind woman who uses a guide dog and her dog is trained to look for the black and white stripes basically, not multi coloured.

I know I make comparison all time but argument is usually “be kind” and not to put one disadvantage group against another

It'd not about pitting us against another group, its about basic decency. If they can extend it for others they should extend it for us too. We shouldn't have to be served outside of shops because there's no wheelchair access, we shouldn't have to miss out on joining in with society just because we're disabled.

I hate it. I'm ignored a lot of the time as it is with my frame but it's worse if I'm in my wheelchair. People literally walk into me then look as if it's my fault. Like look where you're going! I'm invisible. It's so frustrating. There's no one to help reach things off the shelves in supermarkets when I can't, I can't bend so how am I meant to get things off low shelves? There's so much more too. I'm autistic and have been told I can't shop during autism hours because it's for families with autistic kids, not autistic adults.
There's no support for us and it's annoying.

I've been in a lot of pain lately. All very tedious and complicated and frankly depressing, but it is what it is.

On a brighter note, I just accomplished my first online shop and home delivery with Morrisons. The driver helped put the shopping in my bags at the door, wore a mask as requested (as did I - I'm immune-suppressed), and he was very nice and friendly. I know that should be the industry standard, but it isn't.

Well done on shop how did you ask for a mask? Wonder if changed policy now? I found because flat is inside long hallway no windows they still don’t wear mask and treat as if is outside.

Need to catch up properly with thread. Sending hugs and strength to all.

Just wanted to send an extra hug to @HerRoyalHappiness as what you said about sleeping and panicking about being broken into resonates with me. It's every night with me. I'm sorry to see you have other issues going on too. I'm as yet undiagnosed but almost certainly autistic. I've masked for so long, it's exhausting ant the mask is well and truly slipping now. Of course family and friends don't get it because they've seen me mask most of my life. It's yet another thing I don't want to have to burden them with.

@Akire

Well done on shop how did you ask for a mask? Wonder if changed policy now? I found because flat is inside long hallway no windows they still don’t wear mask and treat as if is outside.

Akira, I've had emails from all the major supermarkets, and they are definitely back to being committed to all staff wearing masks unless exempt. And customers too.

I’ve had the ones about shops but I’ve found before it was I don’t need mask for doorstep delivery even when going in communal hallway, in a tiny lift then another enclosed hallway and then standing right next to you. I tend spend loads on tiny fast little shops as can’t be bending to empty crates at time. Glad it worked for you.

How did the apt with care coordinator go?

@RainbowZebraWarrior that sounds really hard.

I’m much more snotty now and coughing oh joys. Not been anywhere without a n95 mask honestly! Don’t see anyone wouldn’t mind if had a decent snog off someone

@RainbowZebraWarrior yeah the masking is difficult. My family were all shocked when I got diagnosed but since they've been really helpful and supportive and I don't have to mask as much around them anymore because they know me being weird isn't just me being weird its my autism!
@Akire oh no! I hope you feel better soon

@Akire I ask in the delivery instructions if the driver can please wear a mask at the door if possible because I've got a weak immune system, and I say that I'll be wearing a mask too for the same reason. (Pretty much in those words.)

The medication I'm on at the moment means I'm supposed to avoid all infections.

I appreciate some drivers will be exempt but it doesn't hurt to ask, I figure.

Evening everyone.

Not been on here for a couple of days, but I hope that you are all managing ok?

I have a follow up appt from my MRI last night and am booked in for an epidural steroid injection for my back next Saturday. Has anyone had one of those? Am very scared - I had an epidural with my first baby and it was traumatic and didn't work..... am sure this is different but still shitting bricks. (Apologies for the language!). It was be great to hear other people's experiences?

X

Can understand why you feel apprehensive. Did they explain how successful it is or left to do own research?

They said that it may not be a long term solution. But might allow my body time to heal without me having to taking all the pain meds I'm currently on.

@ndo4000 I've never had an epidural so can't say if it will be helpful or not but it's understandable you'd be scared given what happened with it not working during childbirth! That must have been awful.

@ndo4000

They said that it may not be a long term solution. But might allow my body time to heal without me having to taking all the pain meds I'm currently on.

Have they given you pros and cons? I hope it will be beneficial to you. If it does allow your body time to heal, then that's a good thing.

Sorry, I am always hesitant with such things due to not working with myself and family (EDS and Ankylosing spondylitis - epidurals don't work at all) but... I've known people who it was worked for. So nothing ventured. Good luck!

I’ve had few lumbar punctures people say they really hurt but compared to a migraine walk in the park. More pressure feeing and knowing where exactly needle is going that’s worst. Unless I have totally blanked it out. Hurt far more after!

Suppose if you give it a go and it doesn’t help then you know or if it’s successful you get some relief rather than always wondering what if?

@Akire

I know I make comparison all time but argument is usually “be kind” and not to put one disadvantage group against another but one group has millions pound funding and power other group v little. I’n pride history month half Twitter change logos including banks supermarkets argos loads programme on TV. Rainbow flag over everything etc yet we are half way through Disability history month not heard peep anywhere. Not even any programmes on BBC4, no comments here that their child has come home school leaving about disability history.

I know Disabled people in their 50/60/70s now who spent their whole life being told be patient things will get better but can’t see it happening my life time. It’s not cool sadly. If I get bugger all service it’s shrug shoulders.

It’s interesting in the whole mask/refuse service argument. It would be reasonable for shop to say no mask no Entry but offer door to pavement service say if you couldn’t do a service online. But no that’s unacceptable yet I’ve often have to be served from
Pavement and instead of being sheepish and sorry you often get rubbish service or ignore you complete when you knock on the window!

I'm in total agreement with you Akire.

Also hate to pit disadvantaged groups against each other. But some definitely get more coverage than others.

I’m part of a disability umbrella group on Facebook and they had small group fundraising for purple pound day. Basically it’s to encourage shops to change things so billions can be spent by disabled people and their families. All good in theory. But they were asking disabled people to fund raise so the group could then encourage shops to basically let us spend money. Hello the reward is OUR MONEY. It’s so far from equality it’s beyond!