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!

Pain is little better here horray! Went for walk local shops but spoilt once again by people’s inability to treat wheelchair users as normal human adults. Waiting cross side road, I’m not weaving around traffic unless I catch both drivers eye especially van drivers who want to nudge forward inch by inch. Some old bloke on the other side of the road decided to take it upon himself to wave his arms and frantically gesture to me to cross! Why?! See wheelchair think oh I know better than than adult on how to cross a road. Even though I’ve never driven a wheelchair and k ow how much distance I need to get around stationary traffic other pedestrians and up the drop curb before traffic starts moving again. Of course other people assume he knows me and maybe he’s my carer and start looking at me as if I’m the one being naughty not listening! Took a lot of will power to try avoid everyone’s eye and cross (with most other people) when traffic cleared.

Then straight into self service till lady behind me shouting at me Do you know it’s self service? YOY HAVE FO HAVE A CARD ITS CARD ONLY!!!!!! yes thanks I know I shop you several times a week. I’ve scanned paid and packed my shopping before ages read the instructions. I know seem silly but when it happens most times you go out that other adults are quite happy to rush and tell you are adulting wrong it really gets you down.

And if I had a quid every time I've stopped in park or on street to read a text or change music and someone’s come over and asked me if I’m ok! I saw an adult in the park on their phone. My first thought was that person needs me to ask if they are ok!! It’s 2021 and wheelchair users are still looked upon as if have escaped from residential care and shouldn’t be out on their own and cope basic tasks.

Don’t worry about your op @Evenstar (think it’s you) if it’s obvious I’ve hurt my foot wheelchair user you get treated normally!

@Akire yes it is me, just off for my COVID swab in a few minutes! That sounds extremely annoying, I think unless someone is in an obvious predicament then you should wait to be asked for help, nobody wants to be treated like a child!

Yes I know every time I go out someone’s going say or do something. You think by now It would be like water off a ducks back. But I’m sensitive soul and it annoys me for hours. Good luck with test and following isolation!

Sorry I've been awol! I totally lost the thread and just found you all again.

So I finally have a diagnosis of motor neuropathy caused by nutritional deficiencies. Apparently it's a very extreme effect of going totally vegan on a whim and not eating properly or taking in any vitamins. Let that be a lesson! No idea yet if it is reversible, I'm on lots of different vitamins to boost me and I have started to get a tiny flicker of movement in my feet although it's exhausting trying to move them.

I had my first physio appointment this week and they have organised a new tri Walker, some supports for around the toilet and a perching stool for the kitchen to arrive tomorrow so that will be a big step in getting some independence back. I'm also getting some ankle splints to steady the stupid foot drop that stops me from walking.

I've also dipped into savings and ordered a fancy bath lift which is arriving next week. I am ridiculously excited by the prospect of an actual bath!!

Pain wise the amitryptaline and cocodamol seem to be doing their job! I still get nerve pain shocks into my feet and my ankle but my shins are a lot less painful and the shocks aren't as bad as before.

Sorry I've rambled a bit.... will go back and read through what I have missed now!

That’s good news for finally a diagnoses and an explanation! Great when things get moving and they can start offering you physically adaptions to help.

A long read, but The Guardian is running a week long series about chronic pain starting from today www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?CMP=Share_iOSApp_Other

That’s great article. It’s what many of us poor souls have been saying after years of pain. Something is wrong with my body NO I’m not feeling depressed or anxious!

Had decent day met up for lunch with friends but been long long time. Had to take different wheelchair so all hip and joints and back all really sore and killing me now. But you have to expect that when you push yourself #payback time. Still felt very strange to be in restaurant with other people.

Hope we are all surviving in our own ways x

That sounds nice @Akire. Doing OK here, I can’t even take the dogs out as I am self isolating for my operation so I think the pain is better than usual.

Today’s Guardian article in their chronic pain specials, quite a few people who have lots of different overlapping conditions, they should come and talk to some of us www.theguardian.com/australia-news/2021/jun/29/i-struggle-every-day-with-the-loss-of-my-former-life-what-its-like-to-live-with-chronic-pain?CMP=Share_iOSApp_Other

I am struggling with my reflux again (I have a hiatus hernia) and know I will have to try and get the surgery, it was not considered severe enough 5 years ago, even though after a barium meal the whole thing came straight back up through the oesphagus. They said there was no damage despite this, but now I have realised that it has severely exacerbated my asthma recently. I will get this foot surgery over and then sort it out.

It would be great if we could get treatment before damage is done ☹️

Another great article though same thing years later there is a problem and it is very much luck as to what support of any you get.

I have hiatus hernia to though not so bad at the moment. At one stage was vomiting every day. Interesting about asthma link to hadn’t though about that. Mine plays up for a month really and then “for no reason” calms down. Now I think it may well be linked to times when reflux is bad!

Sometimes it is hard to join the dots and work out which problem is causing what symptom.

Look forward to reading this one.

When's your op @Evenstar?

Tomorrow, will let you know how I get on. Hope your pain is a little better today.

Rooting for you @Evenstar hope it went well and you don’t have to stay in.

Anyone who is struggling with getting in the bath.

It is SO worth the money for a bath lift. I've just had my first bath in a year after struggling and crying over the shower stool for go's knows how long. I am literally the most chilled that I have been since this all kicked off!!

Wow that sounds lovely! I’d love bath but cheaper for housing association put in wet room or is it really is just leave out shower cubicle and get the whole floor wet!

I hope there was lots of bubbles

@cricketmum84 that sounds amazing, enjoy! Sadly I am stuck in hospital, I woke up with pain absolutely off the scale despite being given a nerve block, and my oxygen sats and blood pressure are still low. They are hoping to let me out tomorrow, but my discharge letter is not done and that took 8 hours last time ☹️

Sorry about the pain hope you mange to sleep ok tonight. Hope you feel safe with covid and all.

@Akire they have been very generous with the pain relief, so I am quite comfortable now thank you. I am in 6 bed bay with only 3 of us, so lots of room and feels very safe and I have had both vaccines too.

Nobody will be coming in overnight and they said I will only need one set of observations overnight so I am OK and will hopefully get a good sleep, just disappointed not to get home as it was only meant to be day surgery. Thank you for asking 💐

I’m glad the drugs are good throw me some

Oh @Evenstar I hope you are home and doing better very soon. I absolutely hate being stuck in hospital.

I got an appointment letter yesterday to see my neurologist again next week even though I'm not due to see her until august. Trying not to worry.

No bubbles unfortunately as I've been warned it can damage the bath lift. However I was given £50 birthday spends by my lovely nana and MIL earlier this month so I blew it all on molten brown bath and shower gels and shampoo and conditioner so I literally smell amazing right now 😂😂

Awww baths are lovely glad you treated yourself.

@Evenstar that must have been scary but I'm glad they are monitoring you and the ward isn't too uncomfortable. Really hope the pain stays at bay for you

I am on etoricoxib
It's an anti inflammatory. Only take one per day. I have to say it's been amazing for me.

Has anyone else tried it?

No never tried that one but mine is nerve pain rather than inflammatory pain so I get Amitryptaline and codeine.

@Akire I've always wondered about a wet room, doesn't it just get mega slippy though? I'd be afraid of falling.