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!

I’m In wheelchair so when I have in past tried tip pizza delivery man etc they seem get very confused. Wait what I can’t take money from a disabled person!!!! It’s breaks their mind. Really I’m just customer tipping you a quid for bringing it up the tower block not to a fake “I can’t leave my Bike it get nicked, can you come down”.

Same here, one delivery guy actually had to kick the parcel into the hall this week because he wasn't allowed to enter the house and I could reach it on the floor. Was quite funny actually!

I had Iceland last week I had stop the man coming in flat. Normal leave on doorstep. Before I knew it he had stepped inside and coming towards me had to put my hands up stop him. Don’t think men realise you don’t walk into single women’s flat never mind disabled women’s flat. I’ve no idea if he was heading towards kitchen or just hallway but was like what the!!!!

@Akire hi and yes a regular name changer and was on the first posts asking why can't we have a chronic pain board.. still not one I guess!

It's is the curable app, yes it costs I can't recall how much.. but it's honestly helped put out pain fires over the last 6-8 months.

You can listen to stories from others, it guides you through the thinking and mind brain connection, helps calm down your central nervous system and opens your mind to be in control of your pain, rather than the other way around.

The last thing I wanted as a chronic pain suffer was to be told "it's in your head" trust me I could just go to any GP or consultant and be told that for free.

I think for me, I was getting panicked with everything going on and it's enabled me to feel safe with my pain and talk to myself kindly, it's helped with anger, frustration and helped me understand how to cope and manage the worse days.

I'm bruised on by arm from a hospital stay last week because of pain that was very real, so I'm not suggesting it makes it all vanish in some magic way it's just fascinating and I've found it to be really helpful.

@Akire ohhh ignore me, I've just seen there is a board! Amazing.. off to read.

We do! I did try and @ everyone on the threads who supported the idea of the board but was hundreds of people so could have missed you out.

And steps away from the wheelchair v buggy thread argh argh argh

Today’s new and exciting pain is hip bone. Lovely thank you body. Just when I think everything hurts already and you can’t surprise me any more you do!

Today I’m playing the how many times can you re wash a load before take it out.

Back from neurology appointment and feeling a bit dazed and confused and a bit lost.

He said the neuropathy will never go away. He thinks it's been caused by my massive weight loss and veganism without taking any vitamins. Once the nerves are dead then they are dead. End of.

I may get some functional mobility back but it's going to be a very very long road.

Feeling very lost and sad right now and can't hold a conversation with friends or family as I will just cry.

I can't get my head round the fact this is my life now. I would rather not be here than have to live like this every single day.

Hi @cricketmum84 sorry that’s really shit to hear. Even if you sort of knew it might be the case. It’s ok to have some time to cry and about it is blood unfair

Did they suggest any other drugs that could help or was it just case of you have tried everything we have so good luck?

Thank you @Akire for now it's just a case of continue with the meds, try drink less wine lol and continue with physio to try strengthen legs and ankles. I'm waiting for some ankle splints from neurophysio that should make it easier to walk.

I felt a bit attacked at the start of the appointment because he kept asking me why I couldn't walk. Thankfully lovely FH was there to stick up for me. It's the first time I've seen the top neurologist consultant and he was a bit scary!

*DH

Think we could all do with cutting back on alcohol but got have something in lack of other medical support.

Oh @cricketmum84 that is really bad news, I had no idea that vitamin deficiency could cause permanent damage like that, I always assumed that it would get better when the levels were brought back to normal. I think awareness of this needs to be raised as being vegan seems to have become very common in young people who probably have no idea how important supplements are. Glad your DH was able to be there for you 💐

I am plodding on after my operation, frustrating to be able to do so little. I got a call this morning to say that my rheumatology appointment is likely going to be brought forward, they offered a date next week which I couldn’t make so I should get one for the following week and I definitely have a date in August. I have been waiting from February so progress is being made at last.

Are you still away @Evenstar on your holiday?

I’ve had productive day deliveroo some shopping then made used jar to make curry. And cleaned up! Candles on try get rid of smell but lovely when feel like achieved something.

We go away on Monday, will be good to have a change of scene. Curry sounds nice, I am missing cooking, DH is doing his best but I miss preparing it myself and I don’t like to ask what he’s cooking as it seems like putting pressure on. He isn’t what you would call a confident cook and takes a lot longer than me. He did bring me a nice cake earlier though, I haven’t had cake for a month so that really brightened the afternoon 😊

That must be strange I’ve had plenty carers who hopeless in kitchen it’s so agonising watching them try so simple things. When it’s partner you can’t quite be so directive and more let them get on with it.

Morning been waking up bad headaches last week think related to cycle and age as not had for ages. Nothing like the 3.45 am hammering to put you good mood for the day.

Went for walk/roll but quite cold time i got home so nice spasms now.

I have had masses of fun zooming around in my new mobility scooter! It's been so nice to get out on my own and get a little independence back.

Yes I fell off whilst trying to do Lewis Hamilton style wheelies but I'm ok apart from a sore hand that I may need to have x rated tomorrow if it doesn't settle... oops!

We caught it on cctv though and it does make for quite funny watching 😂😂

X rayed lol not x rated 😂

Morning guys bright new shiny week. Period as predicted killing me but managed get out for walk before for to bad. Luckily nothing else on cards today so can do as little as possible and hunker down.
Have great holiday @Evenstar hopefully you are making good progress to wherever you are going!

Thank you on our way 😊 foot ip

That’s the way to travel!

Enjoying the change of scene and seeing my older sons who have come with us, we are at Centerparcs the rest of them have gone swimming but they can only have 2 prebooked slots so there will be plenty of company.

I am getting wheeled down to the medical centre later where I am hoping to get my foot redressed as the dressing is falling to bits. The consultant said it was fine to have my check up at 3 weeks instead of 2 as we were going away, but hadn’t considered how well the dressing would hold up!

I actually managed to make myself a drink and some toast this morning by using my crutch like a stick on the good side so I had a hand free 😊

That sounds good never been to centre park but they do look place you can relax.