Arthritis, a personal manifesto

stickywicket

Arthritis is tough, whatever the flavour. We all know that. We all, at times, feel the need to 'let it all out'. (Which is precisely what I'm doing now.) And, because having arthritis is no guarantee whatsoever that we won't be subject to all the other rubbish that life throws up, we all have other things going on that makes the arthritis harder to deal with. And the arthritis makes these other things harder to deal with. And non-arthritic people can't really grasp just how tough life can be for us just as we ourselves can't grasp how tough life can be for people with other diseases, other problems which we have been fortunate enough to dodge. But....

….........the bottom line is, there is no cure and we have to live with it. That's the nature of the beast. It's not normally the fault of our GPs or rheumatologists, our physios or our Pain Clinics. Like everyone else in the world, like us, they are not infallible. They make mistakes just as we do. They don't remember everything we have ever told them or even every operation we have ever had. They don't always listen as carefully as we might wish because they, too, have troubles in their lives and listening very carefully all day long requires enormous amounts of concentration. To them, we are each one patient among very, very many. We can't expect them to second guess our wants and needs. We must explain carefully and listen carefully and politely question what we don't understand. We must treat them as caring, fallible human beings not gods who are fascinated by the minutiae of our existence nor robots who will dispense the meds of our choice if programmed correctly. We are our own primary carers. We must take responsibility for our own lives, diseases and treatment while acknowledging that they are the experts, they know more about the meds, they know how to interpret scans, they speak medic and we don't. It's a partnership.

In addition, many of us have had to give up, or at least change, our jobs and live with the consequent lack of income and, in some cases, real hardship. Our husbands, partners and children, too, have had to live within the restrictions imposed on them by our disease. Change happens with arthritis. If we can't cope with change we can't cope with the disease. We have no option but to cope with the disease therefore we must learn to cope with change.

I've only been a member here for three years but, unless my memory deceives me, I seem to remember a time when LWA was a place where people posted about their problems, just as now, but somehow managed to do it with some good humour and even laughter.

How on earth can we live with arthritis in a laughter-free zone? In doing so we give it a gravitas it doesn't deserve. It can hurt me, cripple me, deform me, impoverish me but it bloody well won't take pride of place in my life, usurping all the good things and turning me into a serial whinger. The good things in my life are mostly, but not exclusively, people. I have been privileged to be close to some truly wonderful people. It is they who are the most important things in my life not the arthritis. Their love and friendship is what has shaped me, not the arthritis. I have arthritis: I am a wife, mother, grandmother and friend (and Yorkshire cricket supporter ).

I am, most emphatically, not saying that people shouldn't post about things going wrong. I'm not even saying that people shouldn't post about non-arthritic things going wrong. It is one of the glorious strengths of the forum that we support our fellow members when other misfortunes occur. I'm thinking, as I type, of three current members who are dealing with cancer. Of course we should support them though, I confess, I've gained more from each than I've been able to give. Their courage, strength, fortitude and, yes, good humour in the face of dreadful adversity, has enriched my own life.

I think I'm really saying let's get it in perspective. It's painful, it's debilitating, it's sometimes frightening and, indeed, the very meds we take for it are sometimes frightening. The operations are frightening and the rehabilitation annoyingly lengthy and difficult. But, mostly, no-one is to blame. Anger and outrage will destroy us from within far more quickly and surely than arthritis. Pills help, docs help but laughter helps too as does a sense of proportion.

Living with arthritis is not only about pain and anger, blame and misery. Often it's quite funny. Often, with an effort, even the pain can be faced with humour or, at least, black humour. I think the forum is currently lacking this and is the poorer for it and I, for one, do miss it.

ichabod6

Hello sw,

You are showing signs of becoming a positive self manager,
which is what life - arthritis or not - is all about.

maria09

Hi SW
I think this is the only place where we can be ourselves good or bad and know we are accepted for it
We can't always be upbeat about life and here helps us through those times as we know we are not judged
It's not easy to stay positive so on here we know we will get honest and good advice without anyone saying oh you only have arthritis it can't be that bad
So I say embrace the good days and bad and hopefully we will get through the bad times and start smiling again
Maria

Kittkat

Hello
I agree and to be honest a lot of my problems are not related to arthritis but having arthritis makes it much worse/harder. I have found being constantly negative only makes me feel worse. I've wasted so much time being miserable. I don't think about the future anymore I used to think oh in x amount of years I'll be in a wheelchair but if I am I'll deal with it then. What I do find a shame though is that there are more success stories as probably those who are doing well don't have time to post. That gives the impression that no one with arthritis is doing well but there are some success stories

dachshund

Hello Sticky
that's very true laughter is a good medicine it makes you feel better.
life can be hard at times.
take care
joan xx

dibdab

Hi Sticky,

Just wanted to thankyou for putting it out there! I refuse to be defined by my diseases, though I can't avoid their consequences and struggles, and I am so thankfull to be blessed by the love, support and laughter who know me as a wife/mum/sister/daughter/friend.

Life is for living whatever hand we're dealt, and I for one have laughed and cried with folks on here, and am hugely grateful for the honesty and encouragement I've found here.

Deb x

MrOptimist

Life is like a Mirror - we get the best results if we smile at it

Boomer13

MrOptimist wrote:

Life is like a Mirror - we get the best results if we smile at it

Oooo, I like that one

I like your manifesto sticky. I have to admit guilt for putting out my negativity on the forum, however, I have to say reading replies and encouragement with hugs have turned some rather lonely, desperate moods into much better ones.

I like to think I could give back same to others Laughter truly is the best medicine for me.

suzygirl

Well said, Sticky!

Susiesoo

Thank you, Stickywicket.

Susie

phoenixoxo

Hi sticky,

Thanks for sharing

It's good that you've learned to live with arthritis. I'd add, though, that each of us has a different experience of living with arthritis, and for some it can be very difficult to grasp humour through physical and/or psychological pain, perhaps especially in the early stages but generally whenever we're having a particularly tough time. I think it's positive that people feel able to vent here, a sign that they're confident in receiving support. And if you're missing the dark humour, why not start a thread?

Best wishes,
Phee

villier

Thanks Sticky, very well said, some people can accept pain more than others. I will agree you can't whack laughter for making you feel better and lightening up your mood ................Marie xx

kellerman

SW.....Wonderful post. When I get chance to think I'll answer you. May

Starburst

This should be pinned for everyone to read. Lovely words! You are as articulate as ever, SW. Thank you for sharing. X

stickywicket

Thank you all for your kind comments and, May, its lovely to see you.

( I'll shut up now )

dreamdaisy

Oh Sticky, I envy you your way with words. I've read your manifesto a number of times and still cannot frame a reply. I agree wholeheartedly with everything you say and agree with others' comments too. Yes, there are those who struggle and the forum will usually rally round to bolster and support (which is one of its greatest strengths) but the forum is something organic, it is shaped by those who use it. So many of us are going through tough times at the moment and the forum reflects that. I admit that I now think twice or thrice before posting a moan but it can help just to type it out - submit doesn't always have to be pressed. DD

maria09

SW
Was just thinking they could have a laughter corner in the board index
It might help lighten the mood at times
Maria

dreamdaisy

Every now and again it is hard to find the funny side of things - I am struggling with that today but hopefully it will return. No Cat today - yup, I'm that rough but Mr DD kindly toddled off to Majestic and bought beer. DD

LignumVitae

I haven't been on here for far too long :oops: in a brief moment of silence I've popped on and read this. Thank you, it's a beautiful reminder of lots of things and I can't comment on the recent flavour of things here but I do know your fabulous ability to conquer arthritis with humour, laughter and ingenuity is a real inspiration to me. I'd like to add to the list that arthritis can give you a resilience and inner strength that some 'normal' people will never grasp. Sometimes you have to let the chips just fall where they may and enjoy yourself (that's the Soul Rebels but I love that lyric, it's so true). Thank you Sticky xx

applerose

Only just found this. Very well put Sticky. Thank you. I have had a few things non-arthritis related going on in my life lately. It has helped to post in here and I have had a lot of support and advice and I thank you all for that.

I agree that we have to accept that we are not going to be cured and so might as well laugh our way through life. I am feeling stronger and am starting to make changes to make my life better and so hopefully, I will be able to laugh more.

And Sticky, please don't shut up. I enjoy reading your posts. You always make a lot of sense.

Good to see Val and LignumVitae posting. Hope things are going well for you both.

[Deleted User]

I absolutely agree with your very reasonable manifesto! And I would like to add something one of my very best friends said. She died absolutely prematurely 4 months ago . She died of cancer. When I last met her she said : "Oh- just make it small! Let's have a glass".

stickywicket

Once again, thank you all for your very kind comments. I hope I didn't sound very condemnatory in my long 'rant'. I know we can't all be positive all the time and I do hope I manage to empathise, and sound as if I do, with those who are having a bad day. I was having one myself when I posted this :roll: and I do find a little lightness and laughter helps enormously whereas anger and railing against the inevitable simply feeds my RA when what I want to do is starve the beggur I've learned, over the years, that it hates me saying "OK. Do your worst. I shall still eat, drink, laugh and be merry because you are definitely not the most important thing in my life by a long, long chalk."