frustrated

curemenow
curemenow Applicant2 Posts: 2
edited 15. Dec 2021, 19:48 in Living with arthritis

I understand this will not go live. I am hoping to connect with others who suffer thru the same mind numbing frustrations of dealing with our own pain and problems and dealing with those who have perfect health. I very much want to chat with others who have walked a mile in my shoes.

thank you

sarah

[Edited to remove full name as per guidelines - Community Guidelines — Versus Arthritis. Shell, moderator]

Comments

  • Shell_H
    Shell_H Member Posts: 549

    HI @curemenow - welcome to the online community!

    I see you're here to be able to connect and talk with others who will understand the pain and difficulties which go with having arthritis.

    I very much empathise with how you feel with regards to talking to others who are healthy and do not have the experience to understand what you're feeling or going through. Sometimes it seems like they just do not "get" what you're trying to say, or expect everything to be magically better tomorrow. I have found a metaphor which [email protected] found useful when talking to healthier people, called the spoon theory. If you haven't heard of it yet, it may well be worth having a look and seeing if you could use it yourself:

    You are always very welcome here, to share what's happened and your frustrations, to ask questions, or even to vent when you need to. Please don't worry about it or holding back, we all need space and here we all have experience and can empathise with what you're feeling. Don't forget to look after yourself and your own emotional wellbeing. If you ever want advise or help we're here.

    Lovely to meet you!

    Shell

  • stickywicket
    stickywicket Member Posts: 26,909

    A tricky one, Sarah. I have, over many years, walked many miles in surgical shoes, will I do☺

    I' guessing you're not long diagnosed and have yet to grow your protective thick skin. Yes, people can be crass and fail to understand, especially when we are young and look perfectly OK. I first came across this at school when a teacher asked me to help her move a heavy table and I said I was sorry but couldn't because of the arthritis in my hands. She was furious but, overnight, spoke to teachers who knew me better and, next day, she sought me out to apologise. I think we none of us can really understand other people's problems unless we have had them. I began to learn that at Riding for the Disabled when I met up with people with MS, MR, strokes, paraplegia. The list was endless and my knowledge abysmal. I'd never understood. Never bothered to learn. Never needed to.

    Arthritis is hard to live with but we do develop techniques and learn some useful lessons because of it as well as in spite of it.

    We àll take good health for granted while we have it. Losing it takes us down different roads but still interesting ones.

    There is no cure for arthritis. Learning how to live well with it is a valuable lesson in perseverance. Some will never understand and will make our lives miserable. We don't need them. Most people are, at heart, kind, thoughtful and generous. Those we do need. A daily dose of laughter is a terrific painkiller too. I hope you will manage that.

  • Arthuritis
    Arthuritis Member Posts: 287

    @stickywicket A poetic view from years of experience!

    @curemenow A cure? I agree with StickyWicket Not any time soon, but progress is exponential ie nothing for ages then all so fast, take MRNA vaccines as an example- a never before technique, now everywhere, Electric Cars that drive themselves? Replacing a heart? Space tourism? A pocket phone that lets you do your banking, calling the US, see your family, book your hosp appointments? A dream in 2000


    I think if you are in your 20’s you will likely have a cure in your lifetime. It just needs young scientists in the field.

  • Arthuritis
    Arthuritis Member Posts: 287

    Forgot to add… I remember how costly it was keeping in touch with family & friends in the US before 2000… Our family had to make every minute on the phone count, because it cost a fortune… yes, we had to PAY to use a crackly echoey line! Now I can have a family & friends virtual get together in HD with perfect sound… wait for it… for FREE!!! I wish I hadn’t spent it on BT or AT&T bills, and instead bought their stock and sent letters instead. (e-mail between countries was this new thing found at Uni’s and not much else).

    OK… so what makes me hopeful? At least for those in their 20s & 30s….

    All these marvels of tech came about through human ingenuity… and as marvellous as they are, they are still very limited by human brain capacity within each skull…

    However the next revolution is Artificial Intelligence used in developing novel solutions to problems no human brain can conceive of. This is already being used, but in its infancy. The NHS recently confirmed that AI Pathologist software was better than a human pathologist, (with all the advantages… an instant army, never needs a break etc). AI has also shown itself to be uncannily accurate in predicting the shape of proteins synthesized using mRNA, ushering in the era of complex protein based medicine, using nature’s own software. Until now pharmaco & organic chemists had to toil for years or decades just to produce simple molecules for drugs (trivial compared to what nature & the liver does) and hope they would produce useful effects.

    But AI & ML changes all that, the tech capability difference its like comparing a string of counting beads to a smartphone.

    Don’t lose hope!

  • Arthuritis
    Arthuritis Member Posts: 287

    @Shell_H I love the spoon theory… although I suspect it will have greater impact after 2 years of accepting RA and finding ways to explain to others what we hopefully have learnt to live with by then. Full of admiration of those who have moved on…


    Right now us newly Dx’d are like wild horses suddenly realising we don’t like being saddled with this overwhelming load, esp if its not been creeping up for years, but come on suddenly.

    Covid has made things so difficult for the newbies to come to terms with this.

    I have only just made it past the denial stage in the KR model, and spread out over the next 3. Its a crude model but its one that that the NHS sadly knows too well.

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