Chronic pain
Unhelpful comments
RainbowZebraWarrior · 08/06/2021 21:48
Hi all. No matter what your issue, nobody experiences your pain.
I have hypermobile EDS, Osteoarthritis, PoTS, MCAS and other issues. My family seem to be sick to death of me 'going on about it' so I've stopped as per their requests. I've also noticed on some threads that there are replies stating "I still work 60 hours a week, refuse to let it beat me" Yes, I've done that for 40 years and am now utterly broken. Literally from being superwoman to disabled in the blink of an eye. I am sick of whining, but also sick of being dismissed. I'm so thankful for the new chronic pain board. And I so want to be positive, but just needed to vent today and also reach out to those who feel lost. Huge hugs to you all.
bluedomino · 08/06/2021 22:15
"But you don't look ill"! Thats always a helpful thing they say. Or "nobody cares what state your house is in" but I do and its so stressful having people visit. And "pace yourself"! God, I hate that word. Pace. Like you can plan when the kids go to school or family stuff you can't avoid. Or "But you could do it last week". It's hard. I'm sorry I can't offer any advice but you are not alone and there are others who do understand. Hang in there.
romdowa · 08/06/2021 22:17
@RainbowZebraWarrior
I have hypermobile EDS, Osteoarthritis, PoTS, MCAS and other issues. My family seem to be sick to death of me 'going on about it' so I've stopped as per their requests. I've also noticed on some threads that there are replies stating "I still work 60 hours a week, refuse to let it beat me" Yes, I've done that for 40 years and am now utterly broken. Literally from being superwoman to disabled in the blink of an eye. I am sick of whining, but also sick of being dismissed. I'm so thankful for the new chronic pain board. And I so want to be positive, but just needed to vent today and also reach out to those who feel lost. Huge hugs to you all.
Heds, pots and mcas here too and no way could I work a 60 hour week , I'd end up in a heap on the floor! I'm only mid 30s but my body is wrecked from a decade of hundreds if not thousands of dislocations. I've nerve and tendon damage that will never go away. I'm positive in my own way but I'm also realistic ! Anyone who tries to dismiss me gets shown the door fairly fast!
Akire · 09/06/2021 14:50
Hey welcome to the boards. The old “pain doesn’t stop me” quotes are not very helpful. Just means you haven’t been in enough pain yet. My favourite is when people see you in pain and say in surprise oh do you have pain today? As of the last 26days since they saw you last have Been pain free because they couldn’t see it.
RainbowZebraWarrior · 09/06/2021 15:26
Thank you all so much for your replies. I think I really just have the full house yesterday. Every comment you've quoted above plus after being told in one breath to pace myself and I was doing too much, a relative then said to me can you put my food order in and go and get me some new T-shirts. I can kind of laugh about it now, however the answer is no I bloody well can't. Hope you are all doing ok in this hot weather everything is even slower than usual I was going to see if I can catch some of you on the other threads it's been a few days since I've caught up. Thanks again for making me feel like I am still a human being. My family look at me as if I'm an Alien haha.
LegoCaltrops · 09/06/2021 15:56
Oh God yes. On one day DH will tell me I should go to bed because I'm shaking, looking ill, obviously in pain, etc. So I do but I get forgotten about, no food or drinks. Next day he's complaining that he's had to do the dishes & laundry 2 days in a row. So I say I'll do it & end up being sick or fainting & he tells me off for pushing myself too hard... 
Once I slipped halfway down the stairs while bringing some laundry down, & he came out with his standard line "I'd have done that" & I just thought "and I'd never have heard the end of it".
My mother is just as bad. If I'm up & about I'm pushing myself too hard & should take more time to rest. When I'm resting I'm a lazy arse who needs to do more around the house. Can't win.
To make it worse, my GP has referred me to a dietitian, who's put me an a really complicated elimination diet for my IBS. Virtually no processed food allowed at all. So DH's usual dinner for me (that he usually brings me when I'm stuck in bed) of tinned soup is no longer allowed. He has to cook. The horror. I've asked for quinoa, tomato & an egg tonight. It can be done in the electric rice cooker. I'm trying to be positive though as I know that at least this will definitely improve relatively soon. It's only been a few days. The leaflet I received from the dietitian is 20 pages long, of which 10 pages is just tables of which foods I can & can't eat. Most of the really good food seems to be in the NO column...
CustardSquirrel · 09/06/2021 16:04
Oh yes, fellow chronic pain sufferer here. Some people spout such utter crap my eyes nearly roll out of my head.
"Oh , you need crutches today, you didn't need them yesterday "< tinkly little laugh> Yes Sandra from accounts, my medical condition and how it can vary from day to day is the gift that keeps on giving, now fuck off .
Akire · 09/06/2021 16:26
@CustardSquirrel
"Oh , you need crutches today, you didn't need them yesterday "< tinkly little laugh> Yes Sandra from accounts, my medical condition and how it can vary from day to day is the gift that keeps on giving, now fuck off
.Oh my how annoying is that! Reminds me years and years ago I was on crutches for about 6months. Someone like that asked to have a go. She walked across the room and then spent next half hour openly complaining loudly about how much they had hurt her hands. She didn’t seem think that I had been using them for 6months without complaining once!
IGotFat · 11/06/2021 09:32
yeah, I am 51 got fibro and arthritis. Once when I was working, I was the youngest in the office, there was a lot of carrying heavy items, etc in the job and pushing trollies, and was made to feel that I was "putting it on " when my hands were agony. I had a massive lump on my thumb joint and went on to have a bone removed. But got the comments of: "we are all older than you why cannot you cope", and my mum is old and has arthritis but doesnt let it get her down (like you)"
Akire · 11/06/2021 14:25
Love yourself user name @IGotFat 
it’s amazing amount of people that think age always means peak fitness. Or if they are able to be on their feet all day than you can.
No one thinks sitting at home crying about your illness is a good move but “dont let it get you down” is really not helpful. Live is limiting enough without being told something horrible is happening but be really happy all time or we will all judge you for not getting over it.
Row1n · 07/08/2021 19:37
Just found this post and board and I can empathise with so many of these!
I find people close to me are always questioning me about how I am and I find that so draining, especially as if I tell them Ive had a bad day or anything that isnt positive, I end up getting a lecture about being healthier and losing weight etc. Or following how much pain relief Im taking and making me feel I need to have a reason why, other than that the pain is unbearable and me lying on the sofa, sobbing while also unable to properly cry because it hurts isnt a good enough reason to take strong pain meds.... urgh.
They try to be understanding but dont quite get it right, and somehow make me feel pressure to get myself well again as if I can flick a switch
OneNightTimeMenaceStrikesBack · 07/08/2021 23:22
the amount of people who try to give me 'cures' and swear blind it worked for their aunty edith is astounding. I have CRPS, arthritiseds and ibs. i know what works for me and what doesnt, i dont need to try eating spoonfuls of tumeric while int he downward dog pose!! i appreciate people like to be helpful but when you gently try and tell them youve tried it already,t he go off in a huff and tell me im not trying harder and 'you just dont want to get better' of course id LOVE to be better but these are illnesses without cures, just management, its not as easy as turning up to the various specialists i see and yelling 'CURE ME!!!'
RainbowZebraWarrior · 08/08/2021 16:22
@Akire that's definitely it summed up in a nutshell. I think my Mum and Dad still wonder if it's just been an 'if you don't use it you lose it' scenario. Certainly in relation to my EDS and osteoarthritis. Even with my Postural Tachycardia my Mum said recently "Ah, that's got to be your weight, surely?" In the meantime, I'm trying to be kind. As I don't suppose it's easy to imagine what it's like if you don't have multiple chronic conditions.
HerRoyalRisesAgain · 08/08/2021 16:26
Hello from a fellow zebra.
HEDS, rheumatoid arthritis, psoriatic arthritis and fibromyalgia. I know what you mean about not being able to talk about it. Like we are just expected to get on with life. Meanwhile they cant fathom the amount of pain were in daily, and think it can't be that bad because we arent curled up in a ball sobbing.
If we did that we'd never have any sort of life, and it's hard enough as it is, without adding in self pity!
Stevie6 · 08/08/2021 16:59
So glad I found this today! Am having an utterly shit day, have Fibro and it's just constant, no good days in a very long time. Keep getting told "rest, you're doing too much" but if I don't do it then nobody else bothers! Then comes the "you just have to ask" - no I shouldn't have to ask, you all live here, you can see what needs doing 🤬🤬🤬
Feeling rather sorry for myself today and if I had the energy I'd commit murders (not literal, I'd end up hurting myself more than them in the process)
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