Absolutely! And thanks for your input, appreciated!
Don’t give up Amos. Have those friends over. The BS will be good for the brain!
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I just love this. You’ve only got to see on this thread already, how we’ve made eachother smile whilst sitting here reading the next contribution (for me over my first cup of coffee in the morning), some of us going ‘gosh that that’s a load of stuff for someone to manage’ and/or ‘I totally get that bit’ etc etc.
And it is hard not to rate yourself based on things achieved, as in the actual and metaphorical woodpile. I certainly can do that too much, even with the goal resetting, it can still be all about ‘what I’ve done’ today, this week, this month. The goal resetting is all about making sure I can still tick off achievements really. My ridiculous competitive personality type requires quite a bit of that.
But we’ve forgotten something important. Really important. We’re all coping with this disease and others as well as everything else. We get awfully hooked up on what the disease makes us lose but we forget that just coping with the disease is an an achievement in itself. We’re all still sane (or sane enought anyhow 
) we’re still here, we’re still making each other laugh, cry, feel less isolated, we can least get words down on a forum that helps not just us but others.
Learning to cope with this disease has given me positive things too. It’s hooked me into a huge number of people I would have never encountered otherwise. It’s also taught me a heck of lot about medicine, doctors and research facilities too. It’s certainly made me stop and listen more, I have far more empathy, I’m certainly more kind, I’ve learnt to stop and smell the flowers more, marvel at a view, or sit and just listen to the birds too. I’ve been forced to slow down and that’s not all bad, not by a long shot. I’ve also been forced to start looking after myself properly. It has frankly made me a better person. Challenges have a way of doing that often.
So you see, you can ‘count’ it all up any which way you want to when you think about it. I try and count it all up in a way that can at least make me smile, even just a little smile.
Chose the battles that have the better outcome if you can. Full acceptance of course never happens, just the same way as you never get over the death of someone you loved dearly, you simply learn to accomodate it. It’s always a loss. And it can awfully hard initially but… it always somehow gets accomodated. Think of it like tree pollarding. Virtually chopping it all down doesn’t mean it can’t grow again, it just grows differently but it still grows and it still produces and it’s still very much alive indeed.
So am I very much alive, so are all of us very much alive.
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There is much wisdom in your writing @Poo_therapy and others, you bring a certain calm in the midst of so much uncertainty. It’s a bit like learning to ride the waves on a stormy sea…if we don’t pause to catch our breath in the quiet moments, we will have nothing to fight with when the next wave tosses us. There seems to be a common ground that many are saying that is, “live in the moment”…the storm is perpetual, it just changes intensity and affords periodic respite. Because of the progressive reality of this disease, there will be more issues to contend with. For me, while I accommodate the loss of certain mobilities due to my knee issues, I do think about the other potential losses around the corner…not trying to be over worried but just logical. Is today’s persistent pain in other areas, tomorrow’s next loss? So, keeping a firm grip on the mind and not letting speculation run away with me is so necessary. I’m by nature (and trade) a problem solver which can be tremendously helpful in so many life applications BUT it also can lead to a run away mind that finds no rest and rest is critical right now. Maybe some decaf coffee without all the zip is necessary before resting. Being slowed down can indeed be a gift, thanks for pointing that out!
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Hi Amos. I’ve had similar struggles. Realized I was putting off hobbies because I. Couldn’t do them. I used to ride and show horses, make quilts by hand, play golf. Over time I have learned you can’t do it like you used to. Riding is now at local park on trail horse in the summer (love it at the walk and doesn’t hurt. Quilting still not doing but I taught a friend how to with weekly girl time weekly over 12 months. Can you get a friend to go with you to fish? Or teach hunting safety? Or gun safety perhaps at local shooting clubs or scouts? If need a plan to have some of that fun without expending all your strength and hitting that pain threshold. Check with local forestry service is any volunteering opportunities available? You could get your outdoor fix a little. With golf I can’t play 9 holes. On a good day maybe 4 or 5. Hubby ok with that plus a friend doesn’t mind. Hand in there. Try looking at your fun things from other angles. One may be a better fit.
Amos hang in there!!! Thank you for expressing your frustration so lucidly, I’m in a similar situation at the moment and reading your insightful and astute take on the disease process really helps. I completely understand what you are talking about. I love to bike, over the past years I’ve really tried to lean back into it for exercise (i have sacroilitiis, dx’d in 2012, so it’s been a “bumpy” road getting back into that particular exercise regime, but when I’m feeling good it’s the type of cardio I like the most.) But a few weeks ago my back started screaming again and even sometimes standing long enough to make a cup of tea is a struggle, so taking a bike out has become, well, an impossibility. I had recently ordered a new bike rack for the car because I was feeling SO GOOD just like 2 months ago, and so I had high hopes of taking the bike out of the city - but the rack has just sat in the box as I’m unable to find the energy or strength or ability to even open it. And frankly, I’m not sure or convinced that that energy or strength or ability will return. I don’t know if it’s a blessing or a curse to feel that optimism that I felt when I ordered the bike rack. Now I just see the box it came in as a mockery of my ambition.
I used to be a pretty good pianist. My hands are now like leaden weights, but it doesn’t matter because I can’t even sit in one position long enough to practice a sufficient amount of time. I hold a master’s degree in performance and I had wanted to tour more, to see the world and make connections that way. I was very lucky to be able to reset my goals very early on and establish a teaching studio that sustains me to this day. But I still feel like a failure. Teaching is exhausting too and barely pays the bills. I love it but like everything else lately it saps the life out of me.
I struggle with loneliness, I’ve stopped performing so much so I don’t have the same contact as before with some of my peers. Last year I was lucky enough to move to a tropical island where my partner is from - pandemic answered the question of “should we” - and the daily access to warm sea water and warm walks has been exactly what I needed. Very lucky, especially for someone firmly rooted in the frigid northeast U.S. However, starting a new life in a new place while managing this disease has been really difficult, and has really highlighted its impact on such small things, like making plans. Or eating well. Or the stress of moving to a foreign place. (Turns out, it’s kind of stressful to move to a foreign place.) I’m so afraid of making plans! Hard to make new friends when you don’t want to make plans, or have to cancel, or have to bow out of them early when you actually do go.
My partner is incredible, completely patient and helpful with my needs, so at least I have a tremendous amount of support at home. But I can’t help but feel sometimes that I’m a complete burden, someone who is holding him back from achieving his dreams in life. I know this is hogwash, but I don’t need to explain how this disease does a number on our self-esteem, via depression and anxiety.
Now that I’ve completely coopted your thread with my own litany of complaints, I just want to say, Please keep complaining!!
I’ve held in so much of what I wrote above. I feel like complaining about these things to my family and friends is too much of a burden for them, so I hold it in. I feel like I don’t want to lay it on new friends, or my old friends from afar who I don’t have much contact with anymore. I’ve been in therapy for years, have used antidepressants, have embraced clean eating and exercise, neurofeedback, and all sorts of treatments for my state of mind.
But I find that NOTHING compares with a good old complaining session with like minded folks. So thank you for letting it out here! And therefore helping some of the rest of us feel like it’s ok to do so too.
Thanks @Bern for the good suggestions. We do have to come at things from many angles…as one door shuts, we look for another. Serving others has tremendous value, volunteering/leading/teaching…good for others and self worth!
Hey @gianduio, we welcome you back and appreciate your thoughts. I think there is a difference between complaining and whining…an honest expression about how one feels or has been “hit” by the loss caused by this disease can be healthy venting. Thanks for the encouragement. I know what you mean about not wanting to burden friends or family with the same old pain stories and yes, THIS is a great place to express ourselves to those who really know and care…even though we might never meet in person. Because of the way PsA seems to move around, perhaps you will be blessed with remission in your hands and be back at the piano. Sometimes my heel pain was so bad I just couldn’t do anything but hobble short distances…but that has all but faded and moved to other areas with equal intensity. Because I get bored easily, I just love the variety that PsA brings! Thinking in the ways of Dr. Seuss, speaking to my PsA… “Oh the places you’ll go!…You have moved on from my feet to poke at my seat, then on to my knees, OUCH! have they been stung by bees?? My elbows today and then higher you go. So my brain’s in a fog and I really can’t think, the pain still prevails and I’m right on the brink! Then downward you creep to visit old haunts and stomp on my feet. The ‘logics are failing and my thoughts are now flailing. Oh the places you’ll go!” In Canada we call it “Ps-eh.” My apologies for a ridiculous, random moment.
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The roto-rooter treatment for knee pain is a bit of dispute right now. Have had several and several more in my shoulders. Temporary relief at best was my experience (New shoulders worked great though.) Knees coming up. That temporary relief is what has brought it all into dispute. Seems a quick scope was a cash cow. I reckon Canada isn’t far behind. Knee Replacements BTW are a quick out patient procedure with few complications. UNLESS they require a step therapy (ie roto-rooter) I’d push for new ones. The amazing thing is fixing those knees (and hips) fixes the back…
Yes, I am hearing things like that about knee scopes. Recently read that as much as a 400% increase in knee replacement after a scope. Do you know if a knee replacement eliminates the need for healthy surrounding cartilage…specifically the meniscus?
How about a big maybe depends on the how the orthopod reads your MRI (not radiologist)… FWIW my niece had a meniscal allograft transplantation while she was on the LPGA she got back on the tour a year later but wasn’t the same. She did have a knee replacement a number of years later (actually both knees) and was back to normal.my son had a allograft ACL and finished out his Division 1 Tennis career so who knows…) though he did have major tune up last year.) I would NEVER personally have another scope. Dunno if NUsurface is available in Canada but worth checking out. I know Craig Loucks, MD in Toronto is involved.
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I don’t post often but you really got to me this morning. I hear you so clearly!!! Currently “saving” energy to get through a wedding this weekend. I get so discouraged when doing what I want to do and doing what I need to do are difficult…knowing a flare will come and I’ll pay for it! Thank you so much for your post…we are not alone…such a great encouragement!
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