I'd rather sit on my butt - but....

Damned69

So here I am, a newbie to The Club Of The Damned - as I like to call the community of arthritics. I've already learned that in this club the rule seems to be finding the right amount of pain, because it's bad for you to both avoid it or overdo it.

I always did like being sat on my ****, but now I dread getting off it. Being sat is the only pain-free oasis. So here I am typing this as an excuse for staying here. But as soon as I get up I'm going to hurt. I even hurt in bed because relatively frequently I will roll over - which hurts!

But now my whole body is in "use it or lose it" mode - if I don't get up and work stuff, that's going to go down the same tube as my right hip cartilage. So I gotta move, and hurt just enough not to do any more damage. Bah! And worse, you're on your own finding the right level of painful activity for you!

I was never keen on exercise in the first place, apart from walking, which is now excruciating after 20 minutes, so now I've got PHYSIO. I have already decided that Physio is the worst essential chore ever - I've better things to do with my life, like ANYTHING ELSE. But skip it and my hip will continue its headlong dive into disintegration.

So like you smother the compulsory greens with ketchup or with meat on the same fork, I accompany my Physio with copious quantities of loud heavy metal - from which the most profound line comes from Ronnie James Dio - "you can release yourself but the only way is DOWN."

Lilymary

I can’t help feeling you may be coming at this from the wrong angle. You’re not “damned”, you’re challenged. You’re not looking for the “right amount of pain”, you’re looking for the best amount of relief and to optimise mobility. I tried not to think of myself as a victim of arthritis, more of a warrior. I wear my surgery scar with pride.

I’m afraid waking up in pain in bed can come with the territory, but I worked out a system of pillows and cushions under my joints and torso that propped my body into a comfortable position, so discomfort didn’t make me inclined to change position much and kept my hip in a comfortable position for the pattern of damage there was. Experiment and see what works for you. Also, take a dose of painkillers before you go to bed.

Phsyio exercises are notoriously boring and most physios know we don't do them as much as we should (or at all!), but doing them to music or in front of the tv helps. Also, try the exercise programme on this site, “Let’s move with Leon”. It’s quite good fun, you can do it in the privacy of your home, and make it as tough or as easy as you need or want. There’s also a tai chi class, which you might enjoy. It’s good to mobilise your entire body, not just your hip. My hip was so bad I really struggled to exercise at all, but I had to remain active for my job, but I so missed my Pilates and yoga, which rapidly became impossible for me.

Damned69

I think that being confronted with a life-changing diagnosis requires a response that's right for you, physically and psychologically. I come from a rebellious dark Gothic place in taste, humour and outlook, with a distaste for smiley positive "let's ignore the darkness" attitudes. I'd rather confront head-on how crap this is and get angry about it. Whereas most people seem to find anger and confrontation tiring and scary, I find it empowering. I love the feeling of wrath thundering through me! I'm not against love and light, of which I enjoy plenty, but for me it needs to share my being 50/50 with my Dark Side, like the Yin-Yang symbol. I think that's how the universe itself works. Boiled down, existence is a wave, with a peak and a trough.

Being damned to the disintegration of my hip IS a challenge - the terms are intertwined, not mutually exclusive. I am both victim AND warrior. In fact I think victims make better warriors. I am born to lose but live to win.

But any wise warrior knows he is not infallible, invincible or all-knowing - you need open ears to the wisdom around you. Having lived with this for a while, you know what you're talking about. In the field of living with arthritis, those who have done it longer than me will always have my ear and respect. But then I have to apply that acquired wisdom through the medium of my own personality.

Regarding Physio, I am, considering how much I hate it, remarkably disciplined, having already built it into my routine, a bit like a schoolkid who has double maths in his timetable. I do it because the alternative is even worse! For me deeply resenting it is my way of getting through it. Unlike double maths, at least I can have very loud heavy metal while I'm doing it!

Damned69

I think that when you receive a life-changing diagnosis, you have to process it through the prism of your own personality. I have a rather Gothic mindset and have a distaste for woke smiley smiley "let's ignore how cr*p it is" attitudes. No, it IS cr*p and let's not pretend otherwise! (Btw the forums here are a bit prudish aren't they? Crude language is absolutely not tolerated! I was slightly amused that the word butt is acceptable but a*se is not!

To my mind I am both damned AND challenged - I am victim AND warrior - born to lose, live to win - these terms are not mutually exclusive - and I AM going to have a life of pain, and I'm going to have to learn to keep it within certain parameters that enable me to do stuff within tolerance but not to the point where I worsen the condition or exceed the limit of tolerance.

Getting p*ssed off and mad about it is therapy for me - whereas most people find their dark emotions upsetting and draining, I find them EMPOWERING. I like the feel of the Dark Energy of wrath thundering through me! There's plenty of love and light in my life, but it sits 50/50 alongside the Darkness, like the Yin-Yang symbol - I believe that this is the fundamental nature of the universe itself - when you boil it down, it's a wave, with a peak and a trough.

But any warrior must not be so arrogant as to ignore the wisdom of the experienced - those who have lived with this curse longer than I have will always have my ear and my respect - so I take on board the sleeping suggestions.

Though I hate Physio, I am actually very disciplined in doing it - copious quantities of heavy metal to accompany it gets me through. The alternative to doing is worse! To quote the classic metal tune THE LAST IN LINE - "You can release yourself but the only way is DOWN"!

I look forward to further interactions!

Lilymary

Sorry @Damned69 , I hope you didn’t think I was having a go at you. I’m the last touchy-feely person on the planet (I argue with builders for a living), and you’re right, there have been times when my language has got a bit (ok, very) fruity and sticks and crutches have been hurled with venom. I guess everyone has their own way of dealing with what life throws at them. Mine has (mostly) been to say, “ok, this has happened, what do we do to sort it, and how do I adapt around it?” I realise I won’t get ALL of my life back, (which my first surgeon was at pains to point out to me the moment I stepped into his consulting room, which plunged me into despair, cue change of surgeon some months later). But I know I can get a lot of it back, eventually, and I will be pain free. That has to be an improvement on last year, and gives me hope again. Even on the day of surgery, I was completely calm, as I surrendered my body to the experts to do what they do every day, trusting that they also wanted a good outcome for this patient. (Although I confess to a minor wobble when the anaesthetists got stuck in, but they were very nice, and their confidence made me feel calm again).

If it makes you feel better about it, get angry, but also find the energy to get positive, and get stuck in to helping your body through this c£@p!

Jona

Hi Damned69,

I now live with the expression don’t get mad get even as when I get mad especially at physio or docs I’m penalised yup it still goes on it’s like I’m guilty before being proved innocent bit like the amount of pain a person is in professionals perceive it but don’t experience it

Ive walked many roads and wore many caps but nothing prepares you for getting older or arthritis all I can say is just keep kicking metaphorically speaking

We all curse and swear some have a bit of arthritis that causes severe pain others have severe arthritis that causes minimum pain it is we are all different

Wouldn’t it be great if instead of giving a prescription for tramadol we get a prescription for 6 months in a hot country then I woke up and realised I’m dreaming

Keep posting, keep talking and keep nagging to get the care your entitled too

take care

Jona 😊