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!

Someone mentioned a Bath up thread, laying here daydreaming about the days when that was possible, and yes as others have mentioned I put of having a shower as the pain is so not worth being clean for 😩😁 MNHQ pretty please can we have our own thread, but then again you wouldn’t get it would you, not having walked in our shoes, ahh walking here I go again daydreaming

Managed not a bad day. Nothing done but got through.

I thought about trying to make the shower more like a spa bath type experience. You can put essential oils in, which is nice. But a shower stool would be nicer, so I could sit and rest while enjoying the heat and steam, they do look ugly, but I will probably get it next time I have a flare.

Oooh I have an idea for you.

You can buy things called shower steamers that make a lovely smell in the steam.

These are out of stock but I bet you can get elsewhere

www.asos.com/gift-republic/gift-republic-wake-up-shower-steamers/prd/20514507

The shower steamers sound lovely.

I fell asleep on the sofa, while sitting up! I do this on days, when I don't lie down enough. Which is so frustrating as I want to get on with things. Luckily I had finished the TA application form on my laptop before I fell asleep. I will check it Monday before I print it and hand it in.

My DH woke me up in time for Tea. The nap gave me just enough energy to drag myself into the shower at 9pm and out and dressed and drying my hair under my hair drying hood.

Now just reading in bed, waiting for my legs to calm down and stop spamming, so I can sleep!

I’ve got nice pain kicking in now oh joys. Odds of being able sleep before the early hours are narrowing.

My hair is a disaster not washed it for about a month I’m this close to chopping it off. Covid hit same time as my care package bills went through the roof so been managing with less. But basic self care give down the drain.

@dane8 what area are you in, uk based?

Ah crap. I am getting a cold. I haven’t had one for a full year (think I had covid last March but obv can’t be certain). I am annoyed at how I feel now (sinus headache etc) but mostly just full of dread about how this is going to play out. As we all know, a cold is never just a cold for us 😣

Join me on the waiting for it to kick off bench sky. Do you have everything at home you need or ways to get it so you can extra careful?

I fractured my back on December 12th. I am still in an awful lot of pain most days BUT apparently there is nothing they (NHS/Consultants) can do for me, I have had a follow up scan 3 weeks later and that is it!,,,

Anyone whom has broken their back, suffered a wedge compression facture, please reply. It gets awfully depressing when you think you are on your own.

Welcome @Unreasonabubble everyone here lives with pain you are not alone. Quite often there isn’t a whole amount they can do even when it’s really clear cut when the problem is like your injury. We are not super good at supporting people with long term conditions with pain. Please join in with the pain threads so we can keep you company.

Hi unreasonabubble welcome, I’m so sorry you’ve been abandoned pain wise! It’s so cruel :(

Akire I should have added stuff to the tesco shop last night but didn’t think of it 🤦🏽‍♀️ Thankfully we have a small tesco that will be open soon if I need it.

I haven’t actually had a cold for over a year - last time I was properly ill was almost exactly a year ago when I think it was covid. Before that I was using the steam room regularly and my respiratory health was so much better. I always dread colds in case they reach my chest (it was a persistent chest infection that kicked off my ME).

Whyyy did I not think to do a steam inhalation last night when the 3yo was asleep 🤦🏽‍♀️

@SingToTheSky the trouble is you always have to plan and manage and strategise don't you? We are trying to work out how to support DD who seems to be in an EDS flare up. She was looking at the various pain charts yesterday and wouldn't believe that she was 7 or 8 because that is 'ridiculous, I'm just making a fuss like dad does' ( DH is known for his overreaction to stuff like cutting his finger). Meanwhile she is crying, clenching her teeth, unable to speak a lot of the time and having to eat lying down rather than propped up. She also was mildly receptive to the idea that we brought the commode back in. Usually that makes her cross.

.DH is being really unhelpful ( his idea of helping is to suggest that we watch TV) and our nurse doesn't work Mondays and Tuesdays. We have a blood test scheduled for tomorrow and I know that's going to worsen her ME. I'm dreading today tbh.

@Unreasonabubble welcome. I am truly sorry you feel abandoned. I'm going to say that I think most chronic pain sufferers are, but maybe this thread and others like it can bring you some relief by ideas or just a hand hold.

Yes, all that planning and managing gets exhausting.

I've just got a big foam triangle to put at the back of my reclining chair. It's so much more comfy now!

It’s great when you find something new isn’t it. I should replace my pillows again they do go flat very quickly when use them all day and all night.

Welcome @Unreasonabubble. Sorry you're feeling abandoned. Have you been referred anywhere, waiting for hospital appointments, or are you able to phone your GP and ask them to come out to you to help get you on the right pain meds?

I'm feeling very down this weekend. I'm having nerve denervation this week where they burn the nerves in my facet joints. Literature says you aren't sedated enough that you don't feel the burning after afterwards the pain is bad. I'm feeling so anxious about it all, my chest is constricted. I'm nervous it makes it worse, I'm nervous it doesn't work, I'm nervous something goes wrong. I feel sick 😢

That sounds nasty. Why can’t they give you more drugs durning? Do you have to be awake and giving feedback? Hope they are going sort drugs for afterwards but it’s probable your job to ask specifically and make a fuss.

Where about is the joint ? Haven’t got a clue!

You need to be awake to feel the current. I have coedine at home. I'm just so nervous about getting through the week after with my toddler. He is autistic and he doesn't understand if mum is in pain

It's all in my lower back, lumbar spine facet joints

I’m sorry you don’t have a lot of support. Is he old enough for funding for 2y olds yet? Least when you know it’s coming you can try prepare house wise or give warning what’s not going to be done.

My partner will have be here and he is great, it's not a money issue, my son can't function in a nursery environment yet, he needs to build up to it. I just wish he could understand even a little so he will be gentle. I've had lots of procedures before I'm not sure why I'm so scared this time. I'm just so so tired and pain and worried it will be worse.

Thanks for sorting a thread out.

I was coping with my fibro and M.E pain but last Friday I ended up In A&E and now have prolapsed pelvic organs-all my remaining organs have prolapsed, so yet again I'm struggling-the tiredness and pain from that is causing brain fog etc. My main achievement was having a shower and getting dressed.

Sending love to everyone struggling💜

Hi @sonicshoegazes that sound horrendous. Is it something they can “sort out”. Shower and dressed is amazing under the circumstances.

Today I have cut my husband's and both my sons' hair and not made too terrible a job of it! Standing for long enough to do all 3 is quite a challenge for me but I don't feel too bad and am quite pleased with myself.
I've also eaten far too much cake - less proud of that! 🤣🤣