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

@Akire I sometimes feel like I want to hang a sign around my neck saying "please don't touch or hug me. Sometimes I am mute but I can hear and understand"

If you don't mind me asking, how do you present and what actually helps you in real life from preventing people from assuming you are deaf?

Sorry if I've missed anything glaringly obvious throughout our many threads. I don't mean to be ignorant, I'm just forgetful

Funny I’ve made a new card today saying please don’t touch me
Without permission after being patted one to many times at vaccine centre. No need as I wasn’t anxious or anything and can’t see her doing that everyone.

Sometimes I just let them assume I’m deaf it’s easier. So if I point and gesture someone in supermarket and then say there you go without speaking, then it’s not worth it.

If I’m ordering coffee I will type on my phone my order and show it, sometimes they need ask me something but may not speak. So I then have to type Please speak normally. Most of time then they still do pigeon English like your stupid.

Sometimes I’ve had doctors apt where I’ve written everything out I need to say before hand and then doctor will write down questions. Sometimes depending on how much pain I’m in and if it’s locum I let them carry on. As usually means no chit chat and they say bare mim and I be out faster.

Often if I write I’m not deaf people still get flustered and even though not is NOT in big letters they don’t read it and have keep
Showing them.

Gosh Akire that sounds exhausting for you.

Hope everyone slept well and have nothing too taxing to deal with today. I'm just gathering last of PIP paperwork for appeal. I'm happy with standard daily living component. But, given my limitations and evidence provided think I should also get standard mobility component too.

Really need to put the tree back into the cupboard too (it goes in totally decorated) just takes a bit of working up to. I only have to drag it inch by inch from lounge into hallway next door

Had rubbish night after jab temp shaking, skin feels like sunburnt, joints all really hurt. Hands feels swollen and stiff but look fine. Headache etc

Going be a zero day today, just ordered some Lucazade on deliveroo they are amazing for emergencies.

Sending courage for PIP paperwork little by little. I find just getting the file out is stressful enough but once you start having it all together makes it easier next time.

@RainbowZebraWarrior

Gosh Akire that sounds exhausting for you.

Hope everyone slept well and have nothing too taxing to deal with today. I'm just gathering last of PIP paperwork for appeal. I'm happy with standard daily living component. But, given my limitations and evidence provided think I should also get standard mobility component too.

Really need to put the tree back into the cupboard too (it goes in totally decorated) just takes a bit of working up to. I only have to drag it inch by inch from lounge into hallway next door

What is your mobility like? Just wanted to compare while I'm waiting for PIP decision! Xx

VACCINE WHINGE ALERT

So I just spoke to my GP practice about getting my 4th jab, which will be my booster, after having had 3 primary vaccinations because I'm in the cohort of severely immune-suppressed patients. (I take Adalimumab amongst other things for psoriatic arthritis and psoriasis.)

(It was an almighty faff getting the 3rd primary. I ended up sending my GP the JCVI guidelines ffs.)

Anyway apparently the Practice Manager will now deign to reply to my unanswered email from December to let me know that they don't have any information about any of this yet, for any of their 'critically vulnerable' patients, and they'll contact me again when they do.

Anyone else having a problem getting 4th jabbed?

This all just seems so ... peculiar.

How can they not know? 4th jabs been around for least 2m now. worth starting a new thread on main boards asking for how others got it may give you some ideas.

What do NHS 119 say?

@SpookyScarySkeletons I can walk with crutches about 20 to 40 metres. But.. I often subluxate / dislocate and if so, I freeze and I'm buggered (ok if it happens in house, different if I was outside) I'm also in constant pain so have to rest a lot in between doing things. Often have to have days in bed. I hobble around inside the house clinging to door frames and benches. Can't really do housework. I have a robot vac which is a life saver. I get really stressed about having to go anywhere more than just school run. I have shower board which I can barely use, as it's still too much effort to get on. Have bed lever for getting in and out of bed. Struggle to get over threshold so have those bars outside of doors and special steps (they are actually shower steps) outside the doors to make it less of a 'climb' nd level up path with door sort of thing. I've also got bad stiffness in hands and other joints to struggle to use scissors and knives (have all the adapted ones) and I really need to upgrade car to an automatic as my clutch foot (left ankle and knee) are my worst for subluxating. Pain medication doesn't really work well for me it only takes the edge off, so everything has to be timed / using spoons wisely. Terribly forgetful, have to be promoted by lists, alarms and Alexa reminders. I have Postural Tachycardia so get dizzy and high heart rate which just exhausts me. Balance is absolutely shocking. Like I say, I can just about manage to get over the threshold of the door, but can't do steps or stairs at all. Luckily I live in a bungalow. Hospital rehab team are trying their best to stop me losing any more mobility. I get muscle spasms and fatigue. I get stomach issues which disrupt my day and also make me less likely to want to go anywhere. Home is my haven. I have a tremor. Thankfully I've never hurt or burned myself in the kitchen badly, but I have to be super careful and concentrate on everything which makes me more exhausted.. I can just about manage to dress myself with aids. Socks are becoming very difficult though. Even tying laces hard with pain in hands. Use aids for toilet. I'm down to waking hair about every 6 weeks. takes days to recover. I've also got asthma and allergies so I'm used to having reactions to all sorts of chemicals. Again, this sort of stops me going anywhere where people may have used hair spray for example.

It's just me and DD at home so I don't have a lot of help. If I did get little bit more money, I'd love to have someone to do handy jobs, window cleaner, little bit of gardening. Hate asking my Dad and I feel unable to ask friends as I'm so bad at asking for help so I muddle along. DD just turned 10 so starting to become helpful, but has her own issues bless her.

Hope that makes sense because it was basically just a ramble.

Fingers crossed for both of us xx

Woah! @SpindleyCrow that sounds crazy. Hope you manage to get sorted. Can you not ring 119 and explain to them? (Probably totally unhelpful) My Mums consultant has been great with her for all of the jab related and shielding stuff. GP not a clue. They just don't understand specific conditions enough

Gah! @Akire that's so unlucky. I hope it's short lived for you. I agree, Deliveroo and Uber Eats have been life savers for me when I needed groceries sharpish.

Oh gosh @RainbowZebraWarrior I would definitely appeal if you don't get the mobility element. I'm really hoping I do. I can do up to 10 metres with 3 wheel frame or walking sticks but that's my limit. I start to fall after that. I can get up the stairs now I have 2 handrails but I have to come back down then on my bum. I can't shower even with the shower seat as I'm so unsteady, bought myself a bath lift earlier this year though so as long as someone actually runs the bath for me and gets everything out and helps me into the bathroom I can do that.

I have a perching stool for the kitchen but it absolutely kills my sciatica to stay in that position. Most of the time I just don't bother making any breakfast or lunch.

Fingers crossed for you. I really hope you get it.

@RainbowZebraWarrior can I also say you are doing incredible to be coping with just you and little DD at home. Sounds like you have a bit more mobility than me and god I have literally no idea how you do it.

I am so lucky to have DH here, plus DD(12) (the one who likes to run me bubble baths with her rose petals she was bought for Christmas and convinces me it's in my best interests to order greggs when dad is at work) and my amazing DD(17) (she is the trainee chef who whips up batches of lovely soup etc to try out her new recipes on me).

Now all I need is the robot vac!

Fingers crossed for you @SpookyScarySkeletons. I want to look into getting a bath lift. I've also got a perching stool. I can 'perch' briefly for a minute or so if I need to catch my breath, but also feel the same about it causing discomfort and pain. I tend to have brunch and dinner, so 2 'meals' a day. Ex chef, so feels shitty to admit, but very little actual cooking gets done.

@Akire

How can they not know? 4th jabs been around for least 2m now. worth starting a new thread on main boards asking for how others got it may give you some ideas.

What do NHS 119 say?

To go through my GP practice ...

Honestly, @Akire, some days I could just scream and not stop.

I've just been told I've now got skin cancer as well on top of everything else. Got to have some more biopsies and blood tests done. Hopefully it's all still BCCs and staying that way. Decades of light therapy for psoriasis finally take their toll.

Ah crossed posts Spooky

I'd say I'd be happy with standard rate Mobility. And say I should get the correct number of points required for that. You definitely sound like you should get the enhanced rate.

Thank you so much. This thread is so wonderful sometimes. Makes you feel less alone

Get the Robovac! I have a Eufy and I luffs her

@RainbowZebraWarrior this is the one I have

www.careco.co.uk/item-p-ba01021/elixir-bath-lift/

It is expensive but omg it has been so worth it!

Hey Spooky and Rainbow I get the standard rate for mobility, 10 points. I missed out on the enhanced rate but get a blue badge.

I felt really broken by the whole experience so I didn't appeal. I get the enhanced daily care rate too.

I was very insistent with the assessor that I was permamently in this state (similar to yours, Rainbow) and that there were no 'good days' or even 'good hours'. My telephone assessment lasted nearly 2.5 hours and it was a nightmare to juggle the phone on speaker, keep shifting positions in bed, tell her 'hang on, I need to get adjusted'. My adult son actually answered the phone to her so she was aware he was present, although that wasn't really reflected in her assessment interestingly.

@SpindleyCrow I'm so sorry about the cancer. It's a bastard.
I dont get any mobility rate on my pip, but my mobility has worsened since. I'm due to renew this year so we'll see what they say then.

Thanks, @HerRoyalHappiness.

Re PIP, I've always found the Benefits & Work website very good. I don't subscribe, just trawl the free bits, including the forums and news section. I was assessed in the middle of the pandemic in 2020 (first time) and was probably in the first tranche of telephone assessments, and I much preferred it to going to an assessment centre and being touched by a stranger.

[quote SpookyScarySkeletons]@RainbowZebraWarrior this is the one I have

www.careco.co.uk/item-p-ba01021/elixir-bath-lift/

It is expensive but omg it has been so worth it! [/quote]
Crikey, that's half price Spooky! I'm going to get it. Cheers for that. Hurrah for being able to have a bath

Oh yay @RainbowZebraWarrior yes defo get it ordered if you have the funds!! I cannot even begin to describe the affect that bath lift has had on my quality of life. It's the best money I have ever spent x

I’ve used the benefits and work site before and paid for the guides well worth it. Think only £18 for benefit claimants. I had someone from CAB help me once they had no idea at all. Think was old DLA forms where it was important to answer in way that showed you met the scoring.

@spindlecow sorry about skin cancer hopefully its good prognosis but guess lots of hospital visits and more stress you don’t need. I was reading another thread earlier similar about GP having no clue. The most vulnerable should be formost everyone’s mind. Why are we not surprised?

disaster today, the shitty pathways int he town centre broke the front wheel of my wheelchair, snapped it right through. have contacted wheelchair services and waiting for themt o call me back about sending it in tot hem to hopefully get fixed but who knows how long it will take

Oh no! Is it Manuel or electric? I had one brand were the metal frame had habit of breaking down and weaken and would just snap. Luckily it happened as I was going out my front door and wasn’t stranded miles from home.

Finally got a wheelchair apt next week for assessment for new chair. It’s been broke for years as stuck in to far back position. They fixed it 6-8m ago and even worse need two pillows behind me to sit up straight.