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!

Thank you soover 💐 I think in a way I need to just crack on (but not actually today, I am being kind to myself today...) as if I delay it I’ll just build up more anxiety. It probably doesn’t help I have PMT today which always brings extra anxiety. I have started a thread anyway as it’ll hopefully give me a bit more strength.

I know what you mean about mixed blessings. It’s hard seeing it in black and white isn’t it. I remember feeling so sad over DS’ form (he wasn’t awarded it either, so the tears when it felt like nobody believed us were even worse). Although I can laugh now at the time my hand felt immensely painful just from writing my damn form 😂 have to find the amusing moments somehow don’t you. Somehow! :)

I've been told that I should apply for PIP, I doubt I'd qualify for it though as I manage to do everything where you gets points.

Really wanted a nap today but DS was having a parcel delivered between 1-3 (prime nap time). Typical that. It hasn't turned up.

Hope everyone is having a good day.

Not had the best day after a bad night. Managed put a small shop away that arrived. May have involved alcohol and chocolate so that’s something look forward to later

Oh tough day for me I'm shattered.. Still 2 hours to go until I can get my son down. So much bending with a toddler it's horrendous on my back. I am absolutely worn out

That must be hard do you have to pick him up often or is he age where mostly trot around after you?

Oh constant up and down. He is autistic so he has specific ways he likes to play and lots involve me flipping him upside down trying not to grimace!

Flipping lol Ouch. I’m trying get motivated to move and put oven on for dinner

Well dinner was a mistake. Decided to try and heat up on hob, nearly passed out pain set smoke alarms off. Extra drugs and large dose of rum had taken edge now but sigh

Oh God that's so so tough @Akire. Do you have anyone who can help you?

Just popping in to send you all some love

Nope live on own, it’s fine I wouldn’t normally attempt but every now again you think stuff it.

How is everyone doing today?

Akire sorry you had a rough night, hope you feel better today

I’m a bit anxious still today - PMT not helping. Need to phone open university later which is exciting but scary.

I’m little better drained but we take it as a win. Oh are you studying with them. I have in the past.

I used to, got half a degree worth of credits in various subjects. Then I took on too much and ended up dropping out. So I was on restricted status and only got the confidence to try and find out how to fix it in January! I’ll be starting again though, psychology degree (or possibly psychology with counselling). Definitely only one course per year though. Did you enjoy what you did with them?

I did, no other way I could have got a degree while working full time. But can’t work now but still glad I did it. Is hard work though and you do have your moments where want to Jack it in!

I’m feeling drained today, always way after very bad days feels quite traumatic. Suppose it’s like being physically assaulted but you can’t tell anyone and there isn’t anyone to say anything comforting after because hey that’s just how it is.

Hi @dane8 welcome to the thread It takes years for me not to feel as if I was in some sort of battle with pain. As in Today I’m going overcome! Then one day you release most of time there isn’t anything to win against. Yes there are ways you can make pain worse but comes a point when you stop seeing it as a battle and you just go into survival mode. Not sure I’m explaining it very well. Maybe it just squashes your down so much you stop feeling as if you CAN win.

Pain happens to my body but I don’t have to feel I’m in active battle mode all the time. When you stop all that emotional and physical tension with every wave of pain somehow feels little bit more manageable. Sorry if that just makes sense only to me.

Yesterday I managed to answer the front door in my wheelchair for the first time. I've only been using it since Feb so still getting used to it.

I also managed to get to the loo and back without help all day and got myself up the stairs at bed time alone.

Anyone else have dreams every night where you are walking around and doing things pain free and then just feel absolutely gutted when you wake up and realise it wasn't real?

Hi @cricketmum84 is it manuel or power chair? Good when you can do everyday things with confidence in a chair.

How are you finding people’s reaction? I’ve had deliver people jump back in horror when I open the door. As if I was dressed in lion costume and went roahhhhh. Like it’s a wheelchair get over it!

@Akire it's a manual for now. We've had to buy a second hand one as I won't be referred for n nhs one until I've seen the neurologist to find out what on Earth is happening to me.

So far people have been really lovely! My DH is getting me out for a walk around the streets most days and neighbours I've never spoken to before stop and say hi. Even the local ASBO teens jump out of the way so we can get through and apologise for blocking the pavement!

Hello!
I'm doing well at the moment, and even had a phone call with my mother that didn't leave me feeling like death warmed up! That's a real triumph and achievement! She's definitely one of my pain triggers!

Well done to everyone managing this with small children! I think small children were part of what finished me off (foster carer!). All that putting everyone else first for years!

Hi @picklemewalnuts we all have friends or family that leave us feeling like that. Glad you survived

Hard morning for me. Was taking my son to a support group for children with additional needs, I was in a rush and forgot my painkillers. Had to spend 2 hours running around after him in a church and picking him up, walking back pushing the pram I was about 1 mile an hour... So sore! Silly me 🙄

That’s annoying when you think you have stash in your bag for emergencies and you don’t. Has the group stayed open throughout?