CRPS talk & support

CRPS talk & support UK is a friendly place for those living with (or caring for someone with) CRPS to chat to others about the condition and exchange advice.

[CRPS talk & support @CRPSTalkSupport]

@JonathanShedler People aren’t going to read your substack, because what you’re doing here is clickbaiting in a way that you KNOW is going to hurt the chronic illness community
It’s the headline YOU shared that is being spread about, not any nuance that might be in your sub stack
You know it

IMO

[Burning Nights CRPS @BNightsCRPS]

Thought of the day
With CRPS you are constantly having to factor in how many rest days you will need to be able to go out next week and how many recovery days you will need afterwards.
•
•
•
#BNightsCRPS #CRPS #crpsawareness #crpswarrior #crpssupport #chronicpain #CRPSisReal

[CRPS talk & support @CRPSTalkSupport]

@NeilForPoole OMG

PIP fraud is ~0% according to DWP’s own figures.

So before any of this ‘detail’ - why the hell is PIP being decimated in the first place? Why not fix lost taxes, scrap the HoL daily bonus, HoC subsidised lunches, MP energy claims etc first?

Why us? Chase tax fraud 1st

IMO

[CRPS talk & support @CRPSTalkSupport]

Good. People who don’t need PIP have no idea what it’s like to need PIP - or to fear that lifeline being removed.

Disability benefits are vital and benefit us all. Disabled people don’t store it up - we spend it, often locally.

Fingers crossed that sanity and decency prevail.

[Jessica Elgot @jessicaelgot]

🚨Disability benefit cuts impossible to support, 42 Labour MPs tell Starmer

MPs from across the party call for a pause and rethink.

Full list of names here

[CRPS talk & support @CRPSTalkSupport]

Agree with this. And would like to say that I’m pretty sure both government, DWP etc know it.

Life with disability if any kind isn’t easy. Fraudulent PIP claims are basically zero.

So why are we being targeted?

[CRPS talk & support @CRPSTalkSupport]

Spot on

[Atlanta Rey 📚 @areyoflight]

If you are Disabled, you should not apologise for:

• claiming benefits
• putting your health first
• self-care
• using mobility aids
• needing help
• bad days
• setting boundaries
• not attending social events
• not working
• not immediately replying to texts, calls, messages etc.

You come first no matter what 💜

#DisabilityRebellion

What would you add to the list?

[CRPS talk & support @CRPSTalkSupport]

Sadly, this is true

In my opinion

[Dr Jay Watts @Shrink_at_Large]

Force sick and disabled people into work—and you don’t save money.
You fuel suicide.
Worsen illness.
Deepen stigma.
Break lives.
This isn’t reform. It’s cruelty and it will kill time and time again.
#DisabilityBenefits

[CRPS talk & support @CRPSTalkSupport]

So so true…

Chronic illnesses - esp. ‘invisible’ ones like CRPS are so misunderstood. Having a chronic illness isn’t like how you feel when you are sick for a week or two off work

We’re exhausted, in 24/7 pain, worried, it’s affected our whole life & relationships & who we are

[Phoebe Boag @PhoebsBo]

Sometimes I think that non-disabled/healthy people believe that chronically ill people who are unable to work are basically having a nice long stay-at-home holiday, doing lots of lovely resting and maybe feeling a bit unwell from time to time. It’s not. 1/3 #PwME #ChronicIllness

[CRPS talk & support @CRPSTalkSupport]

Please do this. Wear a mask. It’s such a small thing but could literally save a life - including yours.

Thank you

[Victorian Department of Health @VicGovDH]

COVID is still here & wearing a high-quality, well-fitted mask protects our most vulnerable community members. A simple act of care can prevent serious health complications. Mask up in high-risk settings & reduce the spread ➡️ https://t.co/co7IJydkaj

More tips below 1/2🧵

[CRPS talk & support @CRPSTalkSupport]

About time.

The DWP has been awful to the sick and disabled for many years…and the ‘Fitness for Work’ test is so flawed it’s almost laughable…except it’s not funny.

We always hope for better but keep being disappointed - but at least they’re asking the question now.

IMO

[Disability News Service @johnpringdns]

The boss of the health and safety watchdog has been asked by a disabled MP why her organisation has never investigated the government’s “fitness for work” test, even though it was linked to nearly 600 suicides in less than three years.
https://t.co/LRKODeUJtz

[CRPS talk & support @CRPSTalkSupport]

This.

THIS.

I don’t know about you, but I DREAM of being able to scrub the floors, trawl round the supermarket or dig my garden myself in January. Even scrubbing round the u-bend without snapping in half would be welcome right now.

People in fairly good health, we envy you.

[Han 🖤 CHECK PINNED! @spoonfulofhan]

“You don’t work? Lucky! I wish I could stay home all day”

Switch with me then. You take my illness, and I’ll take your health. We’ll see how long it takes you to ask for it back.

[CRPS talk & support @CRPSTalkSupport]

This 👇

[ChronicIllnessHumor @HumorChronic]

Source: @StynaLane

[ThePOTSPostman @ThePOTSPostman]

Chronic illness is not always visible.

You don’t see the brain fog.
You don’t see the tachycardia so bad you can’t get up, the crushing fatigue. You don’t see the debilitating pain taken with each step.
The dizziness we experience when we stand.

What else don’t people see?

[CRPS talk & support @CRPSTalkSupport]

@DiaryofaSickGrl CRPS. Chronic regional pain syndrome aka Suicide disease

Horrendous constant nerve pain 24/7. No standard treatment, all depends on your doctor and pain team. Frequently the care is poor. Sufferers are left to fend for themselves and find ways to cope. Understanding patchy

IMO

[CRPS talk & support @CRPSTalkSupport]

Absolutely this 👇.

Go easy on yourself. You cannot do everything - so pick your battles wisely and don’t try to please everyone. Take care of you and those you love, ask for help, and expect others to pitch in. Don’t cause yourself more pain 🎄

Remember - you need to rest too!

[Pain News Network @PainNewsNetwork]

Do the #holidays make you feel stressed & exhausted? It's a universal problem, especially for people living with #ChronicPain. Make things easier on yourself by only doing things that you want to do or need to do. Skip the stuff that you “should” do. #cpp https://t.co/DpwRZEEUxj

[CRPS talk & support @CRPSTalkSupport]

This is one of the truest things I’ve ever read. And it hits home hard for all of us with CRPS. Because this is exactly how the world works…

You’re not alone out there. We get it. Keep going 🤗

[CRPS talk & support @CRPSTalkSupport]

SPOT ON

[Dan White : Disability Campaigner / Author / ♿️ @Danwhite1972]

The DWP released statistics showing that fraud in the disability benefits system is a 'non-issue', so why the plans to spy on Disabled people’s bank accounts?

Because the wealthy tax avoiders have political influence, while we do not.
https://t.co/gewBmSYp5k

[CRPS talk & support @CRPSTalkSupport]

No surprise to those of us with CRPS.

Ice is the absolute worst thing we can use on our skin. For many of us, the instructions to use ice to reduce swelling made our undiagnosed CRPS far worse than it would have been.

It’s time medicine caught up with time. Rethink it all.

IMO

[assistant inspector @housetrotter]

apparently doctors figured out you’re actually not supposed to use ice to keep the swelling down. so what the fuck.

[CRPS talk & support @CRPSTalkSupport]

@DumbSpiro @annalandre @ANNVYSHINSKY The venue admitted after, they did in fact have a ramp for wheelchair users but decided not to use it that day (and not to ask if anyone needed it).

Majority of replies here from those with impaired mobility make it clear they understand or have had similar experiences

Not on

[CRPS talk & support @CRPSTalkSupport]

A really interesting thread. What else would you add?