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 for answering the door in your chair cricket!

Akire I know what you mean about the day after. I feel like that with my MH too. It’s like feeling washed out after a really bad tummy bug or something - I feel so depleted and just want to hide.

I have achieved two things today - I phoned the OU (42min! Draining! But I got most of the info I needed and have declared my disabilities too) and went out for a short walk. Trying not to feel despondent that I couldn’t manage much distance compared to even a few weeks ago. But then reminding myself it’s better than last week when I could barely move. Swings and roundabouts

I never have anything for myself just my son's dinosaurs haha.

Yes its open but no shared toys etc, my son has zero interest in human interaction so he doesn't go near people, it's in a huge church. I had to run for 5 secs when he was about to fall, my back was on fire 🙄

It’s really helping me explain things here. It’s not something I spend a lot of time doing normally. Had quite realised how much I needed to say it to people who get it.

@doadeer do you have any support with your son? Is he likely to need continual physically assistance when he is older?

We are waiting for speech and language but we don't really have any support no, my family live at the other end of the country. But hopefully this next procedure of mine will give me 6 months of less pain.

I find ways to cope.

Well done everyone, small achievements are the best! Well we got a letter today from rheumatology saying she would be allocated an appointment date by 23/3 ( not the appointment itself but allocated a date) which is kind of good but now DD is terrified she won't be believed. Because of course, she rarely is

What had everyone got planned for the weekend? Any small walks? Good TV? Nice food?

DD had a dreadful bedtime. Fainted and fell off loo. I was, as usual, standing outside in case. Her very dodgy ankles, hips, elbows and hands meant she couldn't put weight on anything to hoist herself back up. We tried getting her onto a cushion to raise her a bit. After about 30 minutes we asked DH to help. He used a towel under her arms ( like we do for old dog who has arthritis) to hoist her a bit then somehow manhandled her onto the loo. After a massive rest she shuffled front wards onto wheelchair so she was facing the back and I slowly wheeled her back to the bed. But it took another 30 minutes or so for her to have the energy to get into bed. I helped her clean her teeth in the wheelchair and apply her ointments. Then after about 20 minutes the poor girl needed another wee! She has interstitial cystitis. So this time I stayed in the loo with her ( no mean feat it's a tiny en-suite and her wheelchair just fits in front of loo. On Monday I'm going to have to ask for an OT to come and help. We have to have aids - used to in our old house but the OT department has never ever responded to our referrals. Thinking if GP does it they may. DDs nightmare is using the commode in her room. She cannot sit on a bed pan. I wonder about a catheter sometimes? I'm so sad for her. She's 22 in less than a month.

Soover this just sounds like such a horrific situation I cant believe you don't get more support, I feel so sad for you both 💐

Thank you @doadeer it's heartbreaking and I never know what to do. Originally we were suggested a hoist but her skin is so fragile and she bruises so easily and has pain from being touched our children's nursing team advised against. We've always muddled along and her falls were minimised by being incredibly careful and thoughtful about how we do things but her POTS has worsened so much in last few months again. I've thought about knocking out her en-suite and redesigning it but I don't know how she'd cope having to move down a floor for the work to be done. What I truly hate is always having to think so hard about every decision and second guess every single thing, I can never do anything spontaneously!

@Sooverthemill sounds tough evening. Is she getting proper treatment for cyctitis?!I know they can do stuff with long term meds and things but often I know from own family it’s well one of those things.

If she is putting off going to to the loo because of pain and fatigue it’s only going to make it worse. I know I spend hours some days thinking I need a wee but can’t face going right now. Even though I have wheelchair and tiny flat. Would she use commode next to bed for wee? Then she only has to transfer twice not four times. It’s much more comfortable than bed pan as she is upright and better for bladder empty.

Lots of people have catheters for “social reasons” disabled people who need hoists for public loos and can never use loo when out, use them. Or else they would be very restrictive. I’ve had them for weeks a time myself with bladder issues. Yes you can feel them but the relief is not having get up all the time and you can drink more than usually would because not limited fluids because don’t want to move.

I’ve feeling better pain wise but drained after rough week. Flat is a mess and should probable try and do something about it while trying to be nice to myself too. When you have bad days you put stuff off but then it’s just waiting for you... you do to much and on it goes!

Have put this link up again on the original thread as we had lots of people show interest and be shame for us to lose a group of people that showed an interest.

I completely forgot to do my pill boxes yesterday at 35 pills a day that is 490 pills to pop and sort into my two weekly dosette boxes.

So I got up at 8am this morning and sorted all my pills into their boxes, which takes forever. Even using a pill gun to get them out of their blister packets.

Back in bed having a lie down as my legs (nerve damage) and neck/shoulder (pulled muscle) are hurting and there are no more pain pills until 1pm.

I need to get shortly and finish my job application for a TA position at my kids primary school. Which is completely pointless as they don't like me, my chair will be a very tight fit in the classroom and I won't be able to clear up toys off the floor.

But my DH who told me of the job thinks it would be a good idea and I love him, so I will apply and try my very best to get it.

He knows I would prefer to work with children, rather than go back to an office job but I think an office job would be physically easier. Sigh.

Then I need to have a shower, I have been putting this off a couple of days, as I find it all so tiring and hard. But I need to see my mum tomorrow and so showering must be today. Although I am thinking of showering later and go straight to bed, maybe.

At least DH has sorted out a lower shower head, grab bar and bath seat, which reduces the slips and falls. But the effort needed to drag myself in and out, holding my hands high to wash my hair and then drying and redressing, is too high.

Just fed up and feeling down today. Tomorrow will be a better day.

@Worrysaboutalot totally feel you with the shower situation. It's bloody exhausting. I have a shower seat but my legs and ankles are so weak that I just end up in floods of tears trying to get onto it.

I would kill for a bath but I don't stand a cat in hells chance of getting back out of it again!

Yes a bath is just a pipe dream here, too.

But the bath board allows me to shower safely, as long as I don't slip getting on or off it!

Same here love a bath have a “wet room” which is badly designed shower without a tray that floods the bathroom unless you hold shower head and aim towards the drain.

Would be nice to have choice as I could slide a cross onto bath and get self in and out with a rail. But cheapest option is to wack in shower rather than provide bath aids.

@Worrysaboutalot can you ask chemist to sort drugs for you? Even with a pill gun (have to look them up!) that is a massive job.

[quote Akire]@Worrysaboutalot can you ask chemist to sort drugs for you? Even with a pill gun (have to look them up!) that is a massive job.[/quote]
It takes hours and I hate doing it. However I don't know if the Pharmacy could even help me.
As...
...2 pills are GP told me to buy and take so over the counter meds.
...29 pills are GP prescribed
...4 pills are consultant/hospital prescribed.

And I take pills at 7.30am, 8am, 10am, 1pm, 4pm, 6pm and 8pm.

Lastly my pills are still changing doses, painkillers, steroids and immune supressed tablets.

These three things make me think a Pharmacy can't help me. But I will look into it and see if it is possible. :)

We had to buy this bathboard and was quoted £120! For a little bit of hinged metal powder coated shelving. Managed to get one for £90 off eBay in the end.

Would love to have a downstairs restroom and toilet, but unless I win the lottery that won't be happening!

I understand if easier feel in control doing yourself. Especially with pain meds where you may not have set times but more as and when. I find keeping keeping track times various things very difficult. Most meds apps only work if you take same things every day.

Maybe if pharmacy can do some of them it make it a less difficult job and you can do the rest.

Happy Saturday everyone

@doadeer my DS has autism and can relate to the constant running around. He's 15 now but when he was little he was a little rip. I was pregnant at his worse and had really bad SPD. Used to be in tears by the end of the school run, pushing him in his SN buggy up a hill was a killer.

My kidney pain has been getting ineptness over the last week, have had to resort to sleeping upright again. So annoying, I'm exhausted. I'd love an adjustable bed, but they cost so much!

Hope everyone has a good weekend, and Mother's Day.

Oh crikey @AdditionalCharacter that's so difficult you are a wonder woman. My spd was so horrendous I couldn't walk or leave my flat. That is what caused so much pressure through my lower back I damaged the facet joints. I don't think I could have another baby to be honest. And my son needs a lot of love and attention.

How are you feeling today?

Oh sorry missed the bit about your kidney pain, will you be able to rest a bit this weekend?

Oh @Worrysaboutalot that's very tough. AIDS and adaptations are a bit of a nightmare aren't they? And the sorting out of your dossier box sounds bloody hard work. And to all of you I hope this afternoon proves better