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!

@Sooverthemill, I have a low immune system and was ill for at least 36 hours after mine (was Pfizer). My kidneys felt like they were in a vice at one point. Taking an antihistamine worked a bit, if she can take them.

Just had a very embarrassing phone call with my consultant where I cried down the phone because nobody seems to understand the pain I'm in every night. Will be 24 hours a day when I go back to work next week.

[quote AdditionalCharacter]@Sooverthemill, I have a low immune system and was ill for at least 36 hours after mine (was Pfizer). My kidneys felt like they were in a vice at one point. Taking an antihistamine worked a bit, if she can take them.

Just had a very embarrassing phone call with my consultant where I cried down the phone because nobody seems to understand the pain I'm in every night. Will be 24 hours a day when I go back to work next week.[/quote]
It’s hard to open up and be vulnerable isn’t it. Was the consultant helpful?

Hugs to all who needs them

Today has been jerking/jumping/ spasms but I know its from my burst of energy the other day, wrist swelling is down slightly so hopefully they will be able to cast it tomorrow.

I've just got back from my first aid course. It was better than I thought and I passed but I am absolutely wiped out now. I'm going to bed and DH is going out for a takeaway. Glad that's out of the way for the next 3 years anyway.

Thanks @NotanotherboxofFrogs not had a real hug this year yet!

Did manage move some things around in the kitchen so looks tidier and rubbish ready to go out. And no mean feat in wheelchair in a tower block.

Does anyone have a way of marking pain killer times? I’m awful as take different times every day and always do the oh I will remember the time... then of course never do. I do try make note on phone but for some reason and fact it’s in my hand more often than not just don’t!! Share your wisdom if you have any!

Yes he was helpful for once. Having an MRI with contrast, then we will see if I can have minor surgery or removing my kidney completely. At this point I am fine with them whipping it out.

Akire, can you just take them at set times?
I have different pill boxes for different times. If I need painkillers I put them in the appropriate pill box.
So if I'm in pain and need one when I wake I take it, then add one to lunch and two to dinner pillbox (take it before bed).
If I'm in pain mid morning, I take it with lunch or when I need it, then put in tea time and next breakfast pill box.
(Assuming 3 or 4 times a day, that is)

I know I've not explained very well. Does it make sense?

@Akire

Thanks *@NotanotherboxofFrogs* not had a real hug this year yet!

Did manage move some things around in the kitchen so looks tidier and rubbish ready to go out. And no mean feat in wheelchair in a tower block.

Does anyone have a way of marking pain killer times? I’m awful as take different times every day and always do the oh I will remember the time... then of course never do. I do try make note on phone but for some reason and fact it’s in my hand more often than not just don’t!! Share your wisdom if you have any!

I’ve twice double doses the tramadol recently - and I often delay doses because I’m lost track- so I’ve been wondering the same.

There are several online pharmacies that do pouches on a reel with date and time of the dose on each pouch, IYSWIM. So I’m weighing that up, although I love my local pharmacist.

Like this:-

ipill.co.uk/

www.pilltime.co.uk/how-it-works/

www.pillo.co.uk/how-it-works

(Sharing a few different companies to be even handed! )

I’ve got meds I take roughly set times but with pain meds it’s more when I can take no more as opposed to taking 24/7. Sometimes I need take over counter and then stronger ones on top

Either you end up waiting few more hours just case or taken to soon and risk OD.

I do sometimes use timer function countdown on phone but if it’s 3am you don’t want be woken at 7 just to find you can take more meds.

Maybe I get a small white board next to my bed and use that instead. I did look on Amazon and had 2 American style drug pots that had timer on lid showed when last opened. But was £20!

Funny I linked the pill one on thread a few pages back. Good if you have set times but none apps I’ve seen work for drugs outside of 8am-12pm-4pm etc

All these £20s for clever pill boxes and kettle cradles and jar opening devices do add up.

@Akire

Funny I linked the pill one on thread a few pages back. Good if you have set times but none apps I’ve seen work for drugs outside of 8am-12pm-4pm etc

Oh that’s annoying. I hadn’t spotted that.

I've used Medisafe app for several years now, i can set it to remind at whatever time and it Will flash up what to take and when - it's a free app

I use an app called Dosecast to track mine - it's great because if you don't take then straight away it will remind you every 5 minutes until you do. And you tell it how many times a day you can have things, then it won't let you go over that

I don’t want anything beeping as may be sleeping. Just need a it’s been 4h it’s safe to take again if you need.

Hoping get out tomorrow and buy myself some flowers. Need a treat sometimes as a You are doing a good job to my self.
We spend so much time slogging it we over look how amazing we are!

Good plan, Akire!

Someone mentioned a pill gun for getting pills out of packets. How do you get on with it? My thumbs get tired!

Mini win today :)

While DH was on the school run I managed to wheel to the kitchen, stand and reach everything I needed and make myself a coffee! First coffee I have made myself since this started in January. It helps that I've got myself a travel mug so I can pop it between my knees while I wheel back to the living room.

Going to try my hand at making an omelette shortly!

Well done, Cricket! And a reassurance I bet, that there will be more you can do when you are ready.

Thanks Pickle 😊

DH goes back to office working for a month at the end of April so I'm trying to push myself to do more and more alone. I have to come downstairs on my bum and then he lifts me at the bottom of the stairs but I actually managed with just my frame yesterday. And did all loo trips unaided. My sciatica and legs and feet paid for it last night though!

Ouch!

My sciatica cleared up after a gynae op. I think the epidural/spinal block thing must have settled the nerve. I was dreading recovery because I hadn't been able to sit or lie in comfort for any length of time for years.

It's a tricky balance, pushing yourself to do more v not wanting to exacerbate anything!

Made it out and back before side effects made me dizzy and sick. Result.

Bought a small whiteboard for near bed to try writing drug times on. Some times oldie basics are the best.

Had good chat with another single friend over pandemic and how we have change this year. I know everyone has ha d own challenges but being single and lacking contact has been hard.

Well done to everyone who made it to Friday in one piece. Celebration indeed

Saturday check in. Hope everyone is managing in their own ways.

DH has sciatica, it’s awful, I have every sympathy 💐

I’m still housebound. Pain hasn’t been too bad at lately for which I’m grateful - just headaches at the moment accompanied by epic nausea . The main issue physically is that I’m still really weak. I’ve got to the point now where I’m not sure if I really can’t go out etc or if I’m making it worse by staying home all the time. Finding that balance is one of the hardest things about this I find.

I’ve managed quite a bit of admin in the last week, so I am feeling proud of that. Shattered today though since going through a load of paperwork!