CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

Well done Akire! I’ve been there with having to rewash. It’s rarer since we got a dryer (hanging out heavy wet washing is so bloody painful isn’t it?!) as I can put it in there more easily, but now we just have the dreaded clean laundry mountain instead!

I have finished the form!!! DH looked through a load of paperwork (we are SO disorganised, really need to sort through our concertina file thing) and I found my adhd and auditory processing letters. I filled the any other information box to the brim. Just need to photocopy the letters and post it.

No idea if it’s good enough and TBH even if it is, from everything I’ve heard about the system it depends on whose desk it ends up on, and what mood they’re in.

Washing dries inside as tiny flat no outdoor space. So can’t blame that!

Yes PIP is very much gamble. Someone less conditions gets full everything someone had 20y gets zero points. Good news is at appeal up to 90% win. Make sure you photocopy whole form then if it disappears in the post you can re do again.

Thanks akire I’m just glad it’s done now! I’ve been really working on my anxiety over the last couple of years and I’m trying to just accept that I’ve done what I can and I can’t predict or influence what kind of person the reader is. Vile system though, as if people who need these benefits have the energy to spare on appealing? The first time DH had ESA it had to go to tribunal. He won it within minutes, it should never have got that far - the stress it caused was horrendous.

Gah. Anyway. End rant sorry. I just took a little walk to the post box (then decided we will get it sent at the post office instead) and pushed myself to go a little further for some fresh air. Feel horrifically sick and dizzy now though. 🙄

Mines not due for few years... can’t cope stress even looking for paperwork to check!!

Had the brown envelope of doom other day which I think should have adverts about as millions of people. “Dont panic it’s just yearly rate no stress”.

PIP gone up 50p week and electric estimating my electric only going up by £67 this year. So no better off already

I applied for PIP last year. They decided I could do something I can't, and that makes no sense for me to be able to do based on my condition. They then awarded me 0 points because they discounted all the things I said I couldn't do.
I wrote a letter asking them to reconsider and was awarded 9 points, which gave me lower rate care. I got over £1500 in back pay because it took them so long to make a decision!

Everything about PIP is so stressful. I use to get it for a few issues at a low level and had a couple of years to run on that award. But when my mobility plummeted, I had to reapply in the hope that I could get help with a car, as I need hand adaptions to drive now.

I was warned that by applying for another assessment, I could lose my current award! Which really helped my stress levels! I was lucky enough to get a lovely telephone assessor and she was through and accurate.

I was given extra help and I should get my first mobility car in the next few weeks! Still saving up the £3.5k non-refundable deposit. I use to think mobility cars were free, guess a smaller car would be. However as I still need to transport all the kids, power chair and hoist, I needed a people carrier.

But the saddest bit was that they gave me an ongoing award and said they would contact me after a certain date in 10 years to see if anything had changed. Which made me happy that I shouldn’t have the brown envelope of doom for another 10 years but sad that they agree with my doctors that my conditions are permanent.

Plus do I save all my medical letters between now and 2030? If I do, I will have to post a suitcase of letters to PIP!

PS. I have found most of my kitchen, which is taking forever as I am slow and need to be seated most of the time. But I am getting there slowly!

Great news about the mobility car. My deposit is over £35k! Would need larger vehicle with drop down ramp and one I can drive myself. If I had someone full time who could lower a physical ramp and drive it’s still around £20k

So that’s never going to happen!

@Akire

Great news about the mobility car. My deposit is over £35k! Would need larger vehicle with drop down ramp and one I can drive myself. If I had someone full time who could lower a physical ramp and drive it’s still around £20k

So that’s never going to happen!

Akire That is awful!

That is a ridiculous amount of money to find for a car. Guessing you have already tried applying for grants to help?

It is not fair that help varies so much person to person and according to the postcode.

£3.5k is a lot of money to us, double what we spent on my car (which I am selling to raise some of the money we need. As a manual we couldn't convert it) but at least it is a reasonable sum to allow me to drive for the next three years.

But £35k is so high, how could anyone self fund that.

Grants apply if you need for education work or like serious repeated medical appointments. But none of them apply. Even if I did have a grant after 6y you when to redo again so.

Taxis are just really stressful, booking waiting to arrive. Problems with ramps etc

@Akire

Grants apply if you need for education work or like serious repeated medical appointments. But none of them apply. Even if I did have a grant after 6y you when to redo again so.

Taxis are just really stressful, booking waiting to arrive. Problems with ramps etc

Akire I am getting a car so I can ferry the kids around and hopefully get a job in order to save up the next £3.5K, as we have wiped our saving now. Well, we will have, once we pay for the car.

I need to find a taxi company that I can use in an emergency. I haven't tried yet! I have only done one solo bus journey, since I got my chair.

Surely the reason for a car is independence and everyone needs some way of getting from A to B. Though I can see it must be a pain to have to reapply for funding every 3 years.

Yes mobility scheme is flagged as this great thing which it is if you have very limited disabilities. But excludes many more of the most serious. We have taxi wheelchair scheme here but could still wait hours for one and many times I’ve had “I’m sorry there’s not one available... do you still want one?” When your 10miles from home at 9pm.

Akire That is awful, how can they leave you stranded! Clearly if you went A to B, they must now you will need a return taxi from B to A!

Not that I go anywhere much even pre covid but would nice to have the choice when life is limited enough.

Yes, It is very hard not to have a choice of going anywhere.

Gosh Akire, that's really difficult. There should be more help.

I have had a productive day - even managed to take children and dog out for a walk, which I hardly ever do. Knees and ankles are objecting now, but it was worth it.

I've been trying to build up strength so I can do more. It always feels like one step forward, then two steps back as I damage something or other every time. I don't think I can pace it more than I already do.

Thanks guys. Pain also manages suck power out of all areas of your life, your choices and your finances.

Struggling this week. Just needed to admit this. I get my period then it takes 5 days to get going properly.

The feeling low for a week always coincides with a nightmare of things that have to get done for work and that leads to insomnia which is no help for productivity.

Goodness, while writing that I realised I forgot my medication to take my medication again. Not like me.

Awful week, posted once on this thread then couldn't face it again. Pain in my hips has been terrible. Desperately trying to lose weight as its not helping.
I usually can just get in with it, but the last month, have been in tears. Snapped a DS which is unusual for me.
Lockdown ir just pain? Not sure.

Having a dreadful week, cried on phone to GP as I to,d him we had to have more help with DDs pain and that I simply cannot cope with no sleep and the constant fear. He's very sweet. So she's having cocodamol! Ffs. Oh well. She wants to die . Honestly I can't possibly blame her. It's shit.

PIP: DD has more points than she needs for both elements. But weirdly they think even though she cannot get out of bed and they accept that and that she can't hold cutlery that she could prepare a meal . How exactly? Thank god her pints are so high.

I found it very hard doing this review and cried when I got the award up until 2027. I will be 69. I am already on my knees!

@Shosha1

Awful week, posted once on this thread then couldn't face it again. Pain in my hips has been terrible. Desperately trying to lose weight as its not helping. I usually can just get in with it, but the last month, have been in tears. Snapped a DS which is unusual for me. Lockdown ir just pain? Not sure.

I'm so sorry. Please please offload on here.

@Shosha1

Awful week, posted once on this thread then couldn't face it again. Pain in my hips has been terrible. Desperately trying to lose weight as its not helping. I usually can just get in with it, but the last month, have been in tears. Snapped a DS which is unusual for me. Lockdown ir just pain? Not sure.

Please just join in here lots of us are just chatting no need to know exactly everyone life’s story. All still getting to know each other. Just quote a post if you want to reply saves remembering names and details.

It’s never just pain, it can be like torture. Just because we are expected to just crack on does not mean it’s easy.

@Sooverthemill

Having a dreadful week, cried on phone to GP as I to,d him we had to have more help with DDs pain and that I simply cannot cope with no sleep and the constant fear. He's very sweet. So she's having cocodamol! Ffs. Oh well. She wants to die . Honestly I can't possibly blame her. It's shit.

PIP: DD has more points than she needs for both elements. But weirdly they think even though she cannot get out of bed and they accept that and that she can't hold cutlery that she could prepare a meal . How exactly? Thank god her pints are so high.

I found it very hard doing this review and cried when I got the award up until 2027. I will be 69. I am already on my knees!

Sorry they can’t offer anything else that she will react well too. But least he sounds sympathetic if not able to do much. Sometimes that is 90% of the battle.

I think with stuff like prepare a meal they even count stuff like cereal (not saying your DD can manage that) - it’s utterly ridiculous and insulting the way they work stuff out. I’ve heard all sorts about the mental gymnastics they do to prove you’re no more disabled than an average person. Never mind that an average person can actually cook hot meals and that cereal for every meal wouldn’t be remotely healthy. 🙄🤬

Gah. Anyway. I woke up this morning without the crushing sense of dread, because the form is sent off, I’ve done my bit. I was quite grateful actually that I am in a worse phase at the moment - because of the vaccine I think (followed by a cold which always wipes me out for ages) rather than usual stuff but at least it helped me remember what I do need help with a lot of the time. When I’m in a better phase I block out the worse times, it’s like I convince myself this is it! I’m better forever! I’ll never need my husband to take my shoes off for me again! Hahaha 🙄🙄🙄 yeah, until next time.

I’m sorry so many are having tough weeks.

Kiwi hope you aren’t suffering for yesterday’s walk, well done for doing it!

Easy day here hopefully, DH is struggling a bit post jab so I sent him back to bed and am just lazing with the 2 DC at home, eldest is in school

Had awful night with migraine not had bang on proper one for years. Thought linked with ovulation but think it’s period again. Day 15!! Cycle already been 22 day average. Been bleeding through cycle but that’s nothing wrong as it’s not fibroid. Mid 40s so could be peri menapause but I was already having 17 periods a year with horrific pain. Can’t have this for another 7y!!