Chronic pain Cafe - support thread #3 All Welcome

[Akire]

New shiny thread to get us through December & Xmas and possible New Year!

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living with it. Everyone is very welcome

Happy birthday @OneNightTimeMenaceStrikesBack 🎂 🎈

Oh well remembered! Sorry!

Happy birthdays greetings by truck load x

@Akire

That’s very brave, I’ve given up on buses here not for faint hearted just didn’t have nerve constant harassment. Hopefully you live in much more civil place!

Here the buses are long and bendy rather than double decker, and there are two designated wheelchair spaces with seatbelts to secure the chair in place. Also double doors on the side of the bus so you can get on easily, and a wheelchair stop button to alert the driver that you need the ramp down. All good in theory, although I haven't actually tried yet....

Happy Birthday!!

thank you for birthday wishes!

Happy birthday @OneNightTimeMenaceStrikesBack

@Akire if I ever win the lottery, I will buy you an all singing, all dancing wheelchair

who wants a slice of my birfday cake?! i am not tight, ill share :3

Yes please one I can eat all the virtual cake I want!

Oh yes please, sod covid germs when blew out candles let’s live dangerously!

@OneNightTimeMenaceStrikesBack

who wants a slice of my birfday cake?! i am not tight, ill share :3

Haha hope you have had a lovely day!

I am cake free but having a glass of wine in your honour x

Thanks for the cake!

I've just posted this on the Support for people with Autism thread, but hope you don't mind if I dump it here too. I can manage to push on with DDs issues. But wouldn't mind some advice about the uncle. What to do? Just fuck it?

Today 10:33RainbowZebraWarrior

I'm struggling today. DDs meltdowns are getting worse. She also holds her poo in too, and it's been an issue for a year now that the GP couldn't give a shit about (pardon the pun!) GP just rolls out the "you're a big girl now" trope. School nurse is being good, but still doesn't quite get how bad things are. We do have a CAHMS referral and I need to speak to the head. I'm in sensory overload at the moment though so I'm putting off making appt with head till tomorrow or Monday. Struggling to function today, but trying to at least put one foot in front of other and put a load of washing in.

I have an issue with my elderly Uncle. He has pretty much pushed me to breaking point calling me multiple times a day. He has carers, a social worker and physios and nurses coming in for him. Most of which I've organised. He's not my responsibility although he hasn't got anyone else, hence I feel guilt. But... he doesn't give a stuff about my health, keeps me on the phone as long as possible even though I'm starting to get stressed and panicky. Sometimes even having an asthma attack. I think he enjoys the power. He's 84 and doesn't have dementia. He is lonely, yes but he also knows I'm struggling to look after myself. Last week I had to go mute on him and haven't spoken to him for around 10 days. I've made the decision to call him today to try and explain. But if he's arsey with me, I think I'll have to put he phone down and block his number. My mental health is in the bin, and I've felt better these last 10 days for not being forced into conversation with him. But there's the underlying nagging feeling that he's now 'in a huff with me' My Mum says he doesn't understand. I say he doesn'twantto understand. He's been selfish his whole life.

That sounds so tough honestly you are amazing! As for Uncle you know he’s looked after and safe so there is no practically reason for you to HAVE to look out for him. Families are about give and take, if you are getting nothing but stress and agro back and like you say no dementia where he couldn’t understand or offer sympathy and support back, just stop it. Your mum is around as you mention her so you are not like his own living relative?

At best and generous say you are struggling but will ring once a week/month on a Monday evening say. But if even that is over whelming and causing harm block and carry on. He right to speak to you (even if had carers nurses and other family to speak to) don’t over ride your health.

That’s one thing I’ve learnt being chronically I’ll, I would push self to do things for others and would be Pain days after. But then learnt to say No unless I really wanted to and I was getting something out of it. A bored friend that wants met once in blue moon and not that interested in you, talks about themselves whole time. Does not bring value to your life. Much easier said than done but you owe it to yourself x

Thanks @Akire that's so helpful, and exactly what I needed to hear. Mum is elderly and has cancer and other issues. I desperately tried to pass the baton back to her last week, but they clash and have fallen out on the phone (he lives 350 miles from us so thankfully there's no pressure to visit) It was my Mum who started the guilt trip as she knows it's her who has huffed him. I've been firm and told her to stop mentioning it as the guilt tripping and people pleasing she has pushed me into my whole life absolutely has to stop. Cos as you say overwhelming health issues = we trump other family members now.

I know that if I did contact him it would be "Are you better now?" And we all know how that's like nails down a chalkboard. His standard if I didn't answer my mobile straight away was always "Ah, you're in now!" Made my blood boil as A. He knows the concept of a mobile phone. He is ringing me from his. B. He knows I'm unwell and rarely 'out' so usually I'd be in bed in pain. Which was just an extra punch in the gut.

I feel stressed just hearing about him I can well imagine how he is. Belittling health or implying your not really as ill or out doing things all time when you hardly out of bed.

Stop feeling guilty and worried about his feelings when you know he couldn’t give a rats ass about how you are feeling, how you are coping or struggling in your life. Your mum knows why so it will eventually get back to him if he can’t guess why. Don’t let this be one thing pushes you over the edge x

Thanks again @Akire 💜 Very much appreciate it. Hope you're ok today x

I think the straw that broke the camels back was one day when I was crying in pain and despair (only time I've ever done it to him) and he said "Right, I get that you're in a bad mood, but can you get my stuff ordered off the internet" I put the phone down on him.

Anyhow, onwards and upwards! I'm applying for a patient ambassador role today and my OT said she would be my referee because I am eloquent, positive and an inspiration to others

My pelvic pulling pain is back in force (nerve pain my ass) but did go back to sleep so just having breakfast.

Patient ambassador sounds good, bet you have lots to offer.

@Akire Did they rule out endometriosis? Sorry, I remember your had fibroids ruled out, but I know they have been rubbish at dealing with your issues in that area. You're back in 3 months aren't you?

No I had scan 18m ago ruled out fibroids and that’s all anyone ever done. Never even had proper exam or anything! I know I had smear but that’s not nurse having proper look at cervics so could be something simply there.

I’m going go back GP I think because I’ve mentioned endo few times because 1 in 4 women have it so odds are if you having bleeding and pelvic pain it be pretty good place to start looking, right? Nope!

Not even hospital consultant mentioned it even though the history I wrote stated heavy and flooding periods since my first one 34y ago! I included stabbing pain in bottom, constant dragging fullness pain. Plus all extra pain issues with bladder around period etc etc . While some of that may be the nerve pain issue I really doubt it as I know what nerve pain is like and only tiny part of pain.

Plus I’ve been bleeding 2y and no bugger cares just tells me not an issue. All consultant wanting to know is if last smear was clear. But I thought things like ovarian cancer totally different from cervical anyway? One doesn’t mean you don’t have the other.

If you google “is it normal bleed constantly 10y before menopause?” (assuming I hit that by mid 50s) I could have 8y more of this to go. Not mention no blood tests check iron etc though waiting results private ones back.

Have cream to apply for another 5 weeks then leave for 6 weeks before see them. But skin conditions never caused me any issues so really not convinced. Plus even if it is that doesn’t solve all the other issues. Plus nearly out coedine and never get on repeat even though they know need so probable need anything appointment. It’s all bloody (ha) mess feel totally ignored really

I think I'd be tempted to look up NICE guidelines on Endometriosis @Akire If possible, print them out and highlight bits and take to GP. I've found that approach best for the stuff I've fought over most (Had to to it to get HRT too) My best friend had Endo and had hysterectomy at 44. Bleeding an pain were her main symptoms

Hope your bloods come back ok, or if they show anything I hope it helps get sorted. Either way bleeding like that shouldn't be being ignored as it is. It's debilitating on top of everything else.

i didnt sleep well last ngith so im knackered today. also got anothe rperiod so that makes 4 in 7 weeks, cant wait for my ablation to be done

Thanks that’s really helpful, yes it bizarre I’ve seen what least 4 GP over least 6 visits not one mentioned endo. Finally get see consultant on whom I thought finally someone with right qualifications and they don’t mention it either. Yet threads on here when a women bleeds mid cycle and whooshed through all manor of tests. I’m on mini pill now so least periods less but pain still there and still bleeding/spotting every day I mean something is breaking down right?

In other exciting news just treated self to a SAD lamp only small but still 1000 what nots. So hoping will help. Fatigue been awful this week

I've just had some cunt come and kick my door. It rattled in the frame.
No idea who as by the time I'd got there they'd gone. Police are completely uninterested as they didn't actually get into the house.

Oh no hope you can relax tonight. I’ve had it in my block before people trying doors as even when it’s locked still moved in the frame gives you heart attack. I’m
Plagued with kids ringing my doorbell and running off does head in.

@HerRoyalHappiness

I've just had some cunt come and kick my door. It rattled in the frame. No idea who as by the time I'd got there they'd gone. Police are completely uninterested as they didn't actually get into the house.

Oh no, I'm sorry you've had that happen. This is my nightmare. I keep my outside light on to try and deter folk who might do this. I live in a Bungalow, so I think I'm a target anyway. Police are fucking useless and I say that as an ex copper. Are you ok? Do you have anyone to reassure you?