How has arthritis changed what you do for enjoyment?

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When I was first diagnosed with rheumatoid arthritis (RA) 16 years ago I was pretty devastated. One of main problems in the early days was fatigue - I seemed to have no energy for anything other than the absolute basics. And for a while I did nothing but those basics.

Pre-RA there were two main things that I did for enjoyment - making music and making photographs. These were things I started very young - singing, and from my teens, playing guitar. Photography started early teens. I carried on doing both through the years into my 50s - playing and singing in various bands, with no great success but lots of enjoyment, and taking photographs with increasing success ending up winning some awards and being published/exhibited. 

Then in my mid 50s came RA, and things came to a crashing halt - I was medically retired from my job managing a charity, life shrunk to the sofa and the rheumatology department - guitars and cameras mouldered untouched for months - my hands and wrists became clumsy and painful. Cameras and guitars became too heavy, unwieldy and painful to handle. Playing guitar in particular was hopeless - my timing fell apart and my hands just wouldn't do what my mind asked - I gave up trying - I sold and gave away instruments, keeping just one guitar for old time's sake. 

After six months of self-pity the medications and physio started to work - I experienced less pain and stiffness and gained more energy. I started a course in community arts specialising in photography - I adapted my 'taking style' using smaller, lighter equipment, and generally being easier on myself. I ran occasional photo workshops - usually with my partner or an assistant, so the teaching load was shared and I didn't get as tired. I refused any work that meant I would remain on my feet for more than an hour or so.

Of all the professionals I met at the hospital the most encouraging and supportive was an occupational therapist - I saw her several times, and during one of our sessions she remarked that I was very flexible. She clearly wasn't talking about my joints. She explained that I didn't get stuck resisting change - I found ways around difficulties. Her insight gave my confidence a big boost - up 'til that point the experience of arthritis had all been downhill - now I was able to look at my disability as a series of problems to be dealt with.

Around that time I re-met a musician friend who I had played with many years before, and he suggested we get together and try a few things out. That was around 12 years ago and since then he & his wife, and my partner (she plays accordion and sings) & I get together every few weeks to play - we are quite good now, and at least until Covid arrived we'd play the occasional gig. The encouragement and support my fellow band members gave to me was critical in me gaining the confidence to play again. I play differently now - not with as much facility as before, but in many ways better, because I'm more relaxed and not putting effort into "being good". The journey back into music-making involved playing more simply, putting aside frustration, using less demanding instruments - 4 stringed guitars rather than 6 stringed, electric guitars rather than acoustics (electrics are easier to play), I play bass sometimes which means I use my fingers in a different way.

I also put more time and energy into singing - sometimes in choirs, mostly at natural voice singing events - this is an outlet for musical creativity that involves less stressful use of the body and joints, and is inherently relaxing (for me at least).

I travelled a similar journey with photography. I was clear with the people I worked with about my physical limitations, and I have gradually changed to using much lighter equipment over the years.

The pandemic means I have had to adapt again - more landscape and nature photography on my gentle walks, less photography of, and around, people. I haven't played with my band since last summer, but I have built two guitars and repaired several others over the last couple of years.

That seemingly chance observation by my occupational therapist 14 or so years ago encouraging me to be flexible and adaptable made a world of difference. As has the support and encouragement of family and friends. That support, and learning to be open about what limitations RA imposes on me have meant that I have been able carry on being creative and have fun despite arthritis.

I would love to hear about what impact arthritis has had on the things you love doing, and how you have changed the way you do those things to deal with arthritis. Are there things you've had to abandon? What new things have you started that give you joy and satisfaction?

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Comments

  • stickywicket
    stickywicket Member Posts: 27,719
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    Wow! @ToneBlues I'm sure you didn't write this to impress us but to find out what others do. Even so, I'm impressed. I've banged on for years that the more inflexible the joints, the more flexible the mind must be and you have just proved it. Instead of clinging to what you had and letting that make you miserable, you moved on and were later rewarded by finding a different way to get a similar enjoyment. I'm even more impressed because we're talking about being a musician and I know how that kind of gets into the soul.

    OK so, at 15, when my fingers could still play the piano but were hitting all the wrong notes due to the RA, I gave up a mild ambition to be the soloist in Tchaikovsky's Piano Concerto. This was definitely a blessing for the world. I still loved music but I kind of loved boys a bit more so I coped😉 From time to time I tried other instruments but this was all before DMARDS and now it wasn't just my fingers so that didn't work. However, what did work was that I gave birth to a musician and, when he was doing composition for music A-level i decided I'd have to have a go. I took one OU module. It was hard year but I loved it. Since then life has always brought me his concerts, his choirs and it's wonderful.

    Pre-RA and, during early periods of remission, I loved hiking. Musician son's brother has been into sport from an early age (He was playing football at about 5 month's gestation) so I still got in some walking at football, rugby and cricket matches. Cricket is another addiction of mine so 'walking a wicket' became an obsession. I aimed for 3 walks round the boundary per twice weekly match. When he left for uni I took up riding for the disabled. Many happy years until my surgeon got a bit precious about my knee revision so then came the wheelchair walks - I'd walk a bit and ride a bit. I always got ejected for the steep, uphill bits but, hey, that's marriage😄

    When No 1 son moved to L.A. and his little lad started baseball, that became another obsession to the point where his Dad now fixes a camera to the fence and we can watch, over here, in real time on our TV. I draw the line at the UK grandson's rugby. I'm now old and it's cold so that's Grandad's job.

    From the first son being 9 months old I've been involved in doing voluntary work. At first it was nice just to mix with adults(!) but I've always found it really valuable whatever kind I've done. Now that I'm decidedly knackered, my rollator keeps me walking (a little), my sons keep me entertained with music and baseball, the England cricket team keeps me very frustrated😆 but, as cricket is the family religion, it's a shared frustration, and the voluntary work keeps me out of mischief. Well, some😉 I learned to adapt, change and thoroughly enjoy.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Arthuritis
    Arthuritis Member Posts: 445
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    @stickywicket @ToneBlues Inspiring stories that should be included in the VA leaflets handed out by rheumies on first diagnosis.

    Making that mental transition is really hard, particularly when you have hot sore joints to remind you even with the DMARD meds life does not come close to “before RA”. Hopefully the post 6 month settlement period is one to look forward to for everyone.

  • ToneBlues
    ToneBlues Member Posts: 94
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    Hi @stickywicket and @Arthuritis

    In haste, thanks so much for responding - I haven't the time to respond to you properly now but I will in the next day or so...

    Tone

  • Fif
    Fif Member Posts: 114
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    Great to hear about other people's experiences. I'm still in the early stages of coming to terms with my diagnosis and getting to grips with treatment but it's good to know there's light at the end of the tunnel and with a bit of imagination and adaptation I might still get back to doing the things I enjoy - walking, which I now do slowly and with considerable effort, using my tricycle, which at present my knees aren't up to, gardening, when the weather gets better. Lots of things to look forward to if I can stay positive!

  • jamieA
    jamieA Member Posts: 731
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    Before PsA came upon me very quickly I was a keen walker, amateur photographer and DIY'er. I also enjoy cooking. 17 months on I'm back to walking but on flat surfaces mainly - inclines and declines are a bit of a problem so no hill walking for me and my labrador Ben. I've been thinking of selling my cameras as my right hand isn't back to normal and unfortunately that's where the shutter button is. I'm lucky I'm left handed and I've got more control and power in my left hand. DIY is an issue as my wrists and knee preclude doing a lot of stuff. I also need both hands to pick up cooking pans and I've kitchen tools to open lids, bottles etc.

  • frogmorton
    frogmorton Member Posts: 29,506
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    What a fabulous thread 😊

    Thank you so much @ToneBlues for starting it and your wonderful tale.

    My hobbies? Pre Arthritis I reckon I had less as life was very much taken up with work and 3 children and a poorly Mum. Pre kids it was music for me exercise (the gym/classes) and also photography although the arrival of digital did put me off that to be fair my snobbish side considered it 'cheating'!

    Funnily enough getting arthritis was good for me in one way as it forced me to think of me a bit. Once my meds were (more or less) sorted and I got over the mental adjustment side of things I decided to do my best to help me. Hence I started walking regularly and resumed my exercise in the form of yoga rather than strenuous exercise classes. I returned to 🎶 singing and now sing in one choir. (Thinking about Tonesblues natural singing more now though) this has proved really helpful with my now iffy lungs too.

    I enjoyed eating out (pre covid) and still enjoy cooking like @jamieA I have a few helpful gadgets for that. We enjoy travelling in our motorhome so my initial fears of holding my husband back proved unfounded.

    My garden is my sanctuary (albeit carefully and I had some raised beds put in last year to help me) I love watching things grow. I take time to smell the roses and watch the birds.... sigh not a bad life.

  • Arthuritis
    Arthuritis Member Posts: 445
    edited 21. Feb 2022, 11:07
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    @frogmorton I love your wonderful cheery outlook on life despite the challenges, and its of course the best approach, hard though it is, better to look at the glass half full! Thank you always!


    @jamieA Shame about your camera, but perhaps you could sell it and find one with a remote shutter button? Or maybe there is a bluetooth remote for it?

    my new kitchen gadgets!

    @jamieA Yes, def miss the DIY and heavy tool handling. Now tinkering with small electronics & modifying kit.

  • N1gel
    N1gel Member Posts: 161
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    JamieA Depending how old your camera is there may be a wifi app to enable you to take pictures and control settings via your smartphone. I bought a canon camera a few years back and never really understood what the wifi function was for until I did a course on photographing sculpture (more on this later) which requires a tripod and the same position and settings every time - difficult to get to the shutter without knocking things when you've got OA.

    The tutor told me about the wifi app and I've used it ever since - it replaces the old remote shutter release.

  • jamieA
    jamieA Member Posts: 731
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    Hi @Arthuritis and @N1gel

    Thanks for your thoughts on this. I've got both wireless remotes and a smartphone app for my cameras. The problem is that really to use either the remote/phone needs to be in your hand. That leaves only one hand to hold the camera - or you need a tripod. Neither is really an option for me. My right wrist and 3rd and 4th fingers are a bit of a problem so wrapping my hand around the grip is uncomfortable and gets worse the longer I try. I still use the old fashioned viewfinder to my eye and elbows braced against my ribs for taking photographs. If the camera were a mirror image I'd be fine as I'm left handed and have less issues with my left. My daughter gave me a selfie stick for my phone and I seriously wondered if I could come up with something similar for my cameras. I've also thought about the old pistol grips you used to be able to get for film SLR cameras - does anyone remember the Zenith foto sniper system?

    On second thoughts you'd probably get arrested for using one of those !

  • N1gel
    N1gel Member Posts: 161
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    jamieA

    Yes, I had one of those! but as I remember you still had to screw the cable into the shutter button (and the trigger wasn't that reliable) but I get what you're saying about the need for a tripod etc.

  • Arthuritis
    Arthuritis Member Posts: 445
    edited 21. Feb 2022, 11:08
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    @jamieA Hmm yes brings back memories. The mechanical shutter remote as recall required quite a bit of force to trigger it. Selfie sticks would be good if the phone or cam at the end didn’t weigh so much. With the limited force we can muster now, you need something that requires less effort.

    However if you have a camera that will work with an electronic remote shutter keyfob I am sure its possible to extend the remote shutter button to whatever position you find convenient ie extend out the remote button push switch to a convenient position reachable by your left hand either on the camera or the shoulder support.

    With a bit of imagination I am sure you can crack it!

  • Lilymary
    Lilymary Member Posts: 1,742
    edited 8. Feb 2022, 02:17
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    I know I’m a lightweight compared to many sufferers, but my arthritic hip pretty much knocked my favourite leisure activities into a ditch. I went from the very fortunate position of taking my fully functioning body for granted all my life, and given our family history, anticipated doing well into old age. So at 62, this has been a really tough adjustment. 9 months post THR I’m coming to terms with the fact that some of them aren’t coming back any time soon, if at all, and certainly not to the extent that I once enjoyed.

    The big treks and peak bagging are now replaced by short low level walks, but a year ago pre-op even those were impossible, so I’m grateful for this much at least. I sometimes need help getting over stiles or on the odd awkward downhill step (I’ve only fallen twice so far). My husband has found an alternative walking buddy, so I don't have to feel I’m restricting his enjoyment too.

    I’m looking into getting a sit-on kayak, as shoe-horning myself into narrow cockpits, or even worse rolling out of one upside down, is no longer feasible. Horse riding? Given the muscle weakness and groin pain, may not happen again, which breaks my heart, but can’t be helped. I watch it on telly instead.

    Gardening is still possible with a bit more help from hubby, but it feels pretty daunting sometimes. I do it in short bursts, carefully.

    I miss my yoga and pilates classes, as I had really benefited from them, but there are too many moves I can’t do now, so I exercise at home, trying to remember moves and making up my own routines, but it’s not the same as joining a class. One day maybe my body will have healed enough to go back again. Dancing is out of the question, as my balance is so poor. Shame, as I loved a good session at live venues. I wiggle about on the sofa to bands on the telly instead.

    However, all this has made me discover some old pleasures I’d forgotten. I’ve knocked the dust off my guitar (literally) and am really enjoying rediscovering this, and I also knock out the odd poem or two when the mood takes me. I’m looking into evening classes, and may get involved in a few local charities. I’ve had to drastically reduce my workload (I’m self employed), as some aspects are too physically demanding, so it would be good to find something else productive to do.

    Life is different now, as my surgeon warned it would be, and I do feel sad about what I’ve had to give up, things that were so much a part of who I was, but that doesn’t mean there’s no enjoyment in life, there’s plenty out there that doesn’t need me to be super fit. I would have had to face this at some stage in life anyway, for me it’s just come earlier than I expected.

  • jamieA
    jamieA Member Posts: 731
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    I had to take my dog to the vet last week as he had started limping. He weighs 25kgs so it's easier to check him out on the floor. He was a bit skittery so the vet asked if I could help to calm him. I thought nothing of it and knelt down to give him some moral support. At the end of the check I couldn't get up. The vet and her assistant had to give me a hand to get back to my feet. That's the first time out with a hospital environment I've needed assistance from anyone outside my family. It's a sobering thought - especially as I still really enjoy walking on my own with my dog.

    On a lighter note one funny thing that's occurred in the last week. My right wrist and forearm has swollen to the point I've had to move my watch to my left wrist. As I'm left handed I've always worn my watch on my right wrist to avoid damage. I wear a Garmin Forerunner 45 watch that monitors heart rate and counts my daily steps. I've set it to notify me when I've reached 10k steps in a day so I was surprised when I got the notification whist standing in the kitchen cooking. I've since found out it's not as clever as I thought and records stirring as steps. Oh well - back to the drawing board.

  • Brynmor
    Brynmor Member Posts: 1,755
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    "I wear a Garmin Forerunner 45 watch that monitors heart rate and counts my daily steps. I've set it to notify me when I've reached 10k steps in a day so I was surprised when I got the notification whist standing in the kitchen cooking. I've since found out it's not as clever as I thought and records stirring as steps. Oh well - back to the drawing board." @Jamie

    Thanks, I just frightened the cat by bursting out laughing 😀

  • DeniseHighland
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    Just simple things like exercising, walking the dog, travelling and a reduced feeling of being competent in life. I would like those back.

  • stickywicket
    stickywicket Member Posts: 27,719
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    Good news for you, Denise.

    Exercising is essential. Check out this page https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/

    Walking the dog might not be such a good idea unless your dog is happy with short walks and very obedient and 'non-tuggy' on the lead.

    Travelling is actually not difficult these days. Before covid I flew to LA every year to stay with my son for a month. Trains need to know in advance where you're going and what help you need. Even many bus routes now have wheelchair access.

    Feeling competent? i think the more we take charge of our problems the more competent we feel. Problem solving is good for us. I'm amazed and delighted for the 'cameramen' above who have had to go to great lengths to maintain their hobby.

    How have you had to adapt to continue to enjoy life? I hope you've managed to find 'happy things' to lose yourself in.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Chappersj1
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    Hi everyone. I am a 63 year old woman and have osteoarthritis and a right hip replacement. I have a fusion at the top of my spine and prolapsed discs going down my spine and I have crippling back pain. I have just recently been told that I have rheumatoid arthritis. I am in constant pain 24/7 and it really is impacting on my life. The last couple of days has been the worst . All my joints have swollen up and i feel like I’m walking on a bed of nails..I am pretty restricted what I can do exercise but I do what I can. I am a big reader and music listener, if I did not have these I don’t know what I would do. I don’t know hat my day will be like until my feet hit the floor, but whatever happens my glass is overflowing and I get on with my day.

    Julie

  • wazz42
    wazz42 Member Posts: 233
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    @Chappersj1

    I remember that feeling of being out of control very well, and to be honest it does come back when I have a flare in my neck because that could take away my ability to drive.

    Your glass is overflowing - a lovely phrase, I shall remember that.

    I now paint for enjoyment, I seem to have gone to very small scale, I paint birds at the moment, our British garden birds, especially ones in our own garden. They aren't very much above life size but they have turned out well enough for me to put a couple on the wall.

    I still like jigsaws and in winter I often take on out and claim the dining room table for a few weeks - it now takes that long, but is very distracting.

    I love gardening and have loads of aids, including rails to make it as easy as possible. I worked out I could prune and pick the blackcurrants by cutting off the branches with currants on, take them to a comfy seat and then pick off them off! I read that you could use a fork to run down the branch and get the fruit off that way but believe me it really didn't work and was so messy!

    I have my control back and that was the BIG turning point for me. I can choose to manage this condition to allow me to do what I want - and I do!

    xx

  • YvonneH
    YvonneH Member Posts: 1,076
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    Hello lovely members,

    I have been asked to post this to see if any of you would be interested in sharing your story with Versus Arthritis. Stories are really helpful as they show no-one is alone - and they share positive ways forward

    Thanks

    Yvonne

    PS This is open to anyone who would like to share a story, not solely for contributors to this discussion x

  • ClaireX
    ClaireX Member Posts: 6
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    In mid 20s was told i would need a wheelchair in 2or3 years. I wasn't having that. And went on to have a fullish, decent life. Travelled the world, had some physical jobs, gym, swim, scuba dived had another baby in my late 30s. Now at 56 ive ground to a halt almost. Lost my job because i just couldnt do it any longer. I sold my camera gear, could no longer do my 20,000 steps a day, cant concentrate on reading most days. Just gentle 10 minute physio at out patients once a week to look forward to. If i didnt have to get up to let dogs in garden and feed them and cats I'd just stay in bed all day.

  • frogmorton
    frogmorton Member Posts: 29,506
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    @ClaireX you have done so very very well imagine that? you did more than another 30 years through shear determination.

    I don't think you should give up yet either if you can help it. Have you looked at the gentle stretches available on here?

    If you struggle to read now have you thought about audio books?

    Keep chatting to us lot and keep on going ((()))

    Toni xx

  • ClaireX
    ClaireX Member Posts: 6
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    @frogmorton. Thanks, I was just looking at audio books to see if I enjoy being read to. I do have a tablet and kindle too but I’ve always been a page turner. I think it’s just tiredness and lack of concentration at the minute. I have looked at yoga/gentle exercises online, try to use my exercise bike and have weekly physio visits using a bike, treadmill and tension bands. I think some days are just harder than others. I’m usually pretty positive and think of myself as lucky, in fact I’m very lucky!

  • frogmorton
    frogmorton Member Posts: 29,506
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    @ClaireX

    I was also an avid 'manual book' reader too. It's the smell and feel of those pages isn't it? You do adapt though and you will too. I can tell you are a positive person and that really makes a huge difference to how you cope with having a long term condition.

    You are right we are lucky😊

    Take care and make sure you keep posting!

    Toni x