It's better when you know what you're doing

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In the last month I have undergone a crash course on the subject of this fine forum, LIVING WITH ARTHRITIS. When unforeseen sudden changes in circumstances force it on you, you can become an "expert" very quickly in a completely new field. This is not the first time I've had such a crash course - in 2002 my missus went psychotic. I have to say that THIS experience, distressing though it is, is nothing like as bad as THAT was.

The first phase of such an event is the, er, "wtf" phase - out of nowhere bad things start happening and you've no idea why, and with no idea what to do you start reaching out for help. The second phase is the shock phase when you get the diagnosis. At this point, the emotions short-circuit and you're all over the place. In my case, it seems that I become an erupting volcano of bile, a blubbering mass of mourning and the structures of self-discipline and self control built up over years crumble to the ground in the massive earthquake of the experience.

But if the first two phases don't kill you (or someone else) you start to LEARN. Having staggered blinking and shocked from the rubble, mourned the dead of your previous life and buried the bodies, a tent gets erected next to the ruins. Welcome to the new normal. A routine of sorts starts to take shape that fits the new circumstances. It's a new beginning.

Back in the noughties when my first disaster occurred, I went to MIND for trauma counselling. It was there that I got the most useful piece of advice ever: GET MORE INFORMATION! Don't wait for someone to rescue you and give you a rota, find out stuff for yourself. Knowledge really is power, turning you from the victim to the warrior, enabling you where necessary to get stroppy with officialdom to improve your lot.

So now I'm at the beginning of the learning phase. There will be considerable research going on, firstly to speed the process of getting a new hip and secondly to preserve the remaining joints.

So one thing I've learned already is that if one joint has already had it, the others are all on their way out as well. I wish I had realized that back in 2018 when an MRI looking for something else showed up right knee OA. It being asymptomatic (and still is) I took the attitude of "cross that bridge when you come to it" No No NOOOOOOOO!! WRONG!! At the merest SNIFF of OA in one joint, all of them need Physio RIGHT NOW!! It won't save them, but they will certainly survive longer, maybe DECADES longer. Anyway sure enough my recent X-Ray found OA in the left hip as well, also currently asymptomatic. I have no doubt at all that my left knee, the only one unscanned, will also be arthritic.

So rest assured everybody that daily Physio is now going on in all four joints. With the right hip a full month's Physio ahead of the left, it is surprisingly much more difficult to do the left side workout, as the muscles on the right have grown that much stronger. Results then! Amazing how some positive results lift the morale.

I've learned that it isn't the situation itself that's distressing, it's not knowing how to respond to it. I am much better coping with a collapsed floor than missing the bus, even though the latter is trivial by comparison, because in the former case my mind is instantly onto a response procedure - when I miss the bus, or it turns up late or not at all, I'm thinking I'M GOING TO BE LATE AND IT'S NOT MY FAULT IT'S SO UNFAIR AND I GET CAN'T GET MY PAWS ON ANYONE RESPONSIBLE!! AAAAARRRGGHH!!

So everybody I am now a student of the University Of Arthritis. I will be listening, learning, researching responding, taking initiatives. What else can I do?

Comments

  • Lilymary
    Lilymary Member Posts: 1,742
    edited 19. Jul 2021, 13:21
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    It is not a given that if one joint is wrecked a life time of agony, physio and surgery for the rest of the body is inevitable. I spoke with my surgeon last week, 12 weeks post THR, and asked how my other hip was doing, as I know this is also asymptomatically arthritic (as was my left hip for several years despite very advanced OA, which showed its very ugly face after a fall). I wanted to brace myself for when to expect to repeat this ghastly experience all over again. He said it could go on functioning adequately for years, if not Indefinitely, and I should stop worrying about it. So I will. There is strong evidence that my knees aren’t in great shape, although I’ve never had them xrayed. I've been strapping them up for over 12 years when out in the mountains to stop bone grinding on bone on long descents, but I can’t see that physio will make a great deal of difference at this stage and have never needed it despite this. They may, or may not, become a problem in future years, but me worrying about it and obsessing with physio “just in case” sounds like a path to paranoia while boosting my physio’s pension fund.

    there is a wealth of experience from the members on this site, many of whom have suffered debilitating arthritis since their youth (look up idiopathic juvenile arthritis, there are some useful discussions on treatments and how to cope), as well as those for whom it appeared in early adulthood, they all have a head start on this learning curve and were a source of support, advice and knowledge for me through my own grim experience of hip failure, surgery and recovery. I have provided a detailed blog of my experience of surgery (see New Hip Day) which you may find enlightening. There are several other forum members dealing with how to cope with their diagnosis, or immediately pre or post hip surgery, and again, I have found their own insights or advice offered to them by other more experienced members very useful.

    There are also some very useful links on this site which follow current medical advice on the many different forms of arthritis, including hips, what causes it, how to manage the pain, suitable exercises and what to expect from surgery. I have found them invaluable during my own journey up the learning curve from ground zero to the precipice at the top.

    I think you’ll find there are a lot of sites that show hip surgery already, but I would advise against watching them. There are some things we’re better off not knowing and leaving the experts, ie the trained and qualified ortho surgeons, to get on with what they do best, day in day out.

    Just a final word on Physios. Mine is a very experienced and respected sports physio. She has worked with rugby teams and has served as the on site physio for the Tour de Yorkshire cycling event, as well as a huge range of mere mortals, for around 30 years. Her view with exercises for my hip, pre surgery, was “if it hurts, stop, you’re doing too much and will make it worse”. Post surgery, when I’ve needed to rebuild my muscles, many of which decided to switch off after surgery, was initially the same during the healing process to the incised or traumatised soft tissues and while the implants bedded in, but even now, when she said I do need to grit my teeth through the pain, her view is if it hurts for more than 10 minutes after her prescribed exercise, again, I’m doing too much and to scale it back. Physio doesn’t necessarily need to be agony, and it’s a myth that if it isn’t hurting, it isn’t working. It is easy to do more harm than good in arthritic and inflamed joints by overdoing it just to justify your physio’s fees.

  • Damned69
    Damned69 Member Posts: 55
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    The encouraging thing in your reply and what I will certainly bear in mind is that asymptomatic arthritic joints need not necessarily eventually give out. I intend to do Physio that builds muscle around these joints to support the joints themselves, increasing the odds of their longevity.

    One thing I'm definitely not is squeamish - the body is just a biological vehicle made of organic matter to me. I do not believe in souls, spirits or even the self - only consciousness is real, so I would have no problem witnessing the butchery necessary to install a new hip - so long as it don't feel it of course!

    I have no intention of wasting money on Physios - I only wanted one in the first place to diagnose what was happening to me and a stretch regime bespoke to my issue. Now I have these, everything else I can research/do myself.

    An important perspective in your reply was that people have had a far worse experience than I ever will - I'm sure many could justifiably argue that I've got off lightly. I won't forget that I have many blessings to count.

  • stickywicket
    stickywicket Member Posts: 27,719
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    Physio is excellenr and, for people like me, whose joints all move in their own mysterious ways if at all, it's vital. But, if you're planning years ahead, I'd suggest you liaise with a physio to find out the best form(s) of exercise that are not purely exercises. otherwise you'll soon be bored.

    Swimming and cycling come highly recommended. Indeed, anything where your joints are supported is good. Tai chi keeps getting a mention. Versus Arthritis has a good section on exercise. https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/ Or, join Leon and others in the forum above. And good luck.

    By the way, you're shouting again 😉

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Lilymary
    Lilymary Member Posts: 1,742
    edited 20. Jul 2021, 14:09
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    I agree with @stickywicket, and even my physio would agree - just relying on physio exercises is desperately dull and she knows most people don't do them. Plus as your strengths and weaknesses develop, one way or another, the exercises need modifying. Better by far to do some general exercises such as swimming, walking or cycling, (ie all low impact stuff that works multiple muscle groups), which will also help manage weight and mental well being which are also key to learning to live with arthritis.

    Sadly when my hip suddenly packed up and actually got round to telling me about it, the damage was so far gone that exercise of any sort was either impossible (no lateral mobility) or excrutiatingly painful and would ground me for several days till it settled down again, so I had to stop. You can imagine what that did for my mental health. I just decided to dig deep, do what I could to get along on a day to day basis, take enough piills to keep me mobile and hang out for replacement. The recovery from the latter has been a far from smooth process, so I'm still in the digging deep phase, albeit on far fewer pills.

    Everyone's experience of arthritis is horrible. Including yours. You have a right to feel down about it and I admire your new determination to find a way forward, but I found the experience of other arthritis warriors on here and among friends an invaluable guide on how to get through it. You don't need to invent the road map yourself, there are many versions available already, you just need to find one that fits in with your life style and level of pain and immobility. It's not a great journey, but there are ways to make it easier on yourself and your family, and you'll find life can still be enjoyable a lot of the time, just different.