On the Positive Side (and not wishing to gloat since I know how many of You Lot are still struggling on the PMR / GCA Journey): I’m delighted to be celebrating a month of almost complete remission from the PMR symptoms that have dogged me for the last 3-ish years.
You’ll probably be familiar with this kind of thing. Any or all of: Perpetual Pain, Stiffness and Deathly Fatigue (often despite the best efforts to get the Pred dosage ‘right’?), Brain Fog, Pred Tapering Dilemmas, Unexplainable Flares which defy all Logic, Run-ins with ill-informed Medics, Skirmishes with The Aunties when Messing about here (ok, only me perhaps), Pred Head, Bouts of PMR associated Bursitis and Costochondritis, Acne, Gastritis, BPPV, Co-Morbidities, Anxiety, Depression, Heightened Intolerance of usually tolerable Stress, Social Withdrawal, Tensions with N&D or others who don’t understand, Uncertainty, Fear, Existential Loneliness, Loss of Sense of ‘old’ Self, Mood swings, strained muscles, a sad heart and much more besides. I’ve known most, if not all of them. Ohh, the Pain…
That said, my personal PMR Journey hasn’t been entirely wasted. During it, I have at least had the good fortune to be able to get out and about: albeit often in a hunched, shuffling, cranky fashion and defiantly impersonating John Wayne, to explore the exciting world of ‘Collectables’. By that, I mean snaffling things like the occasional priceless Original Rembrandt oil painting and a few Roman artefacts from the local charity shops for a few good-old -fashioned English Quid. ‘Job’s a Good Un’.
But the main ‘Prize’ on my various Charity Shop Assaults has been to amass the world’s largest collection of assorted Faux Leather storage tubs. Yes, 243 of the little Blighters which, like Russian Dolls, nestle inside one another with immaculate precision and would fit neatly into the tiny boot of a Renault Clio. How’s that for a bit of efficient Design and Ergonomic elegance?!
But back to the Plot (if you’re still awake - which I doubt..):
Here’s my Psychological Dilemma. The Precious (243) FL Tubs have become symbolic of my PMR ‘Life’. I have treasured the experience of searching for, collecting and owning them, despite the ultimate futility of the exercise and their taking-up too much space at Benjamin Mansions. But, in an effort to validate their (and my often PMR / Pred addled) existence, I’ve tried valiantly to give them a Purpose in Life equal to mine. I have attempted to fill those silly little FL tubs with all manner of things from useless bits of old string to 20-year old TV Scart cables, mis-fitting plastic food containers and lids and all manner of, let’s face it, JUNK! Oh well, it all seemed to have a purpose at the time...
But my instincts now tell me that it’s now time to Let-go, symbolically at least. I must try to say Goodbye to the Faux Leather tubs as I move on and, hopefully forwards from this awful illness too (as I’m sure You Lot do too).
All of this reminds me of the psychological conundrum of what's known as 'The Stockholm Syndrome’, but I’ll leave it to you to do some homework and draw your own conclusions around this very loose psychological analogy in terms of its relevance to our types of illness. For me? I keep an open mind...
So, it’ll be an advert in the local newspaper / on FB tomorrow to offer my prized FL collection to The World at Large for a mere Fifty Quid. A Bargain for whoever takes-on my PMR Legacy, and I’ll deal with the emotional fallout later… ;-D
But please don’t think for a minute that I’m also saying Good-bye to, or letting-go of You Lot, PMRGCAuk and this precious Community as PMR (hopefully) lets-go of me. I’m here for the duration and, even if 100% ‘better’, I’ll still be around to terrorise you with my silly humour, updates, insights and whatever else - for better or worse. Ohh, Noo!, I hear you say
In case you don’t realise: You Lot have been and continue to be one of the main reasons why I’ve survived my PMR Journey without going (seriously..) Bonkers in the process. Your generous spirit, humour and thoughtfulness have, too, boosted my often equally flagging morale and Sense of Hope despite the brave and humorous façade for which I have become known here. For this, I am and will always be truly grateful to you too.
As always, try to keep smiling on the PMR / GCA Journey. And try to remember: things can, and often do get better. Just be patient, take good advice, and let Time do its valuable work?
With best thoughts, wishes and thanks
‘Uncle’ MB
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markbenjamin57
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I am very happy you are seeing PMR in the rear-view mirror (moving past it), you paid your dues. Thank you for a lot of laughs and smiles. I for one appreciate the time you take to make us laugh.
I think I am suffering from brain fog having just arrived in Canada but I get the gist of what you are saying. We have a really good network here and your epistles? help us maintain our sometimes elusive sense of humour. Don't be a stranger!
Thank YOU Mark for always being so generous with your often hilarious 'spirit' - I'm sure everybody here has at least smiled at your posts even at the most miserable of times. I think you in many ways personify the real value of such a forum by utilising one of a diversity of ways we can 'get through' the really tough stuff - ie. there is - 'practical advice', insights into experiences negotiating systems - medical and otherwise, making comparisons about disease progressions and medications etc etc etc. (ad infinitum) and then there is HUMOUR !! This is not really my forte - I only wish it was (I'm often far tooo serious) - but your 'voice' has so often cheered me up when I am feeling ridiculously 'sorry' for myself - and for that I personally, cannot thank you enough ! So I am very pleased you are coming out the 'other side' and that you will not disappear altogether !!
I hope you have some luck with those fascinating leather tubs - i won't ask just why you fixated on those little numbers - as I have my OWN 'op-shop' (OZZIE term) fascinations to somehow dispose of - but thank heavens we all also have diversity in those matters as well !!
Take care and thanks again for all your wonderful contributions !
Me too !!! I LOVE recycled clothing which i find far more diverse and interesting than a lot of the contemporary rubbish which is also often made in countries with very exploited work forces - usually women of course !! Also I like vintage clothing and design and after selling off quite a lot of it I still retain a 'core collection' which i find it hard to part with. Much of what I have kept is very small sizing though as people used to be in days gone by and as such has quite a small audience for contemporary wear. I also like you enjoy knitting and always have something on my needles - it is very relaxing and I sometimes like to make up my own designs.
Rimmy I love your post!!! I have got some labels that I would never otherwise have afforded. I have some gorgeous dresses. It’s such fun rummaging about and although you have to “kiss a lot of frogs “. You do find the odd prince!!! I’ve got a pure wool calf length overcoat from Harrod’s It is so gorgeously made. It cost $2 as it had been on the rack for two weeks !!! I also have a canary yellow silk and organza ball gown!!! What are your favourite buys?? Xxxxx
Favourite buys !!! - really too many to think of - but I have kept a beautiful fine pure wool sleeveless empire line evening dress -in a pale tangerine shade , hand-beaded glass crystals on the bodice with matching beaded shawl and handbag. This was made in the 60's by a well-known OZ designer and examples of his clothing are in Museums here. It is in quite perfect condition and has so much charm. I particularly love 30's and 40's gear but harder to get now. My fav dress ever (which i wore in my 20s) was 'Princess Marina' maroon lace - waisted full ballerina length skirt long slashed sleeves caught by pearls - it was rags when I finished with it - I wore it so often. I also have some lovely vintage cheong-sams of pure silk with matching jackets - exquisite fabric and wonderfully made with waists of about 22 inches - imagine !!! I love vintage textiles - especially natural fabrics like wool and linen, and love design generally as I have a big interest in the Arts - all of which enhance my life - especially when I feel a bit 'low' - so how can I complain ?
Thanks Rimmy. As I say in in my book (which has sold literally several copies, mainly to daft people with nothing better to do), I started writing this mainly silly stuff 3 years ago to cheer myself up at the beginning of my PMR Journey (or to be more precise 'initiative test') and it went from there.
Trouble is: with You Lot recklessly encouraging me, I've no option but to carry on or you'll be complaining that I don't care about you..
Mark are you cross that I got side tracked on your thread? Sorry darling man. I’m a blonde and we do stupid stuff. I am hoping against hope that you do not drift away from us. Honestly that is a ghastly depressing thought 😭😭😭😭
Not at all Linda - in fact I'm smiling because people's posts here often start on one topic and them meander-off in all sorts of totally unrelated directions!
Quite agree SJ - I am not a religious person but I love music and dressing up, performances, ceremonies (well 'interesting' ones) and lots of (diverse) 'art' thrown in - as well as finding ways to 'celebrate' moments, memories and particular events. The only problem with any of that is that the content (politically) can sometimes be worrying - so I've always felt it quite a good idea to make some of our 'own' stuff up !!
My eldest daughter Angie, would just love you. She and her friends have amazing women only gatherings etc. She really embraces symbolism and meaningful ceremonies. Australia seems to lend itself to that kind of vibe.
Jane it does I think we have our indigenous people to bless for that. Cos of them we have insight into the great mysteries of land and universe. I wish I could meet you!!!!! ❤️❤️❤️🌹🌹
I have never been to WA but I long to. Are you in rural or city area? I’m about 15 mins drive from central Melbourne and I am not sure I would cope with living in the country. Xxx
We live outside a small regional city near the coast - I much prefer the country - cities for holidays but country to live in most of the time is my preference !
Happy to know you are feeling well. Please keep us laughing and enjoying your special take on life with PMR, the unwelcome guest we've all been hoping will disappear. You make life laughable again for so many.
As a new person to this site, your post made me smile, even at this hour! Haven't done a lot of smiling lately. Love your humour & so pleased you are now well. Please keep writing. Best wishes and thanks.
Semi bonkers are not the words! Completely bonkers I think. New to this site & to the horrid pmr & pred. Finding the info here very helpful. My state of mind not helped by the fact that at 4.30am & getting up yet again & it was dark. Didn't want to wake hubby so shuffled downstairs thinking oh no, I have something wrong with my feet now, they feel awful. What's going wrong now. Went into hall & turned on light to find had my slippers on wrong feet!
Thanks daisychain12, it feels good that I belong somewhere. It's such a lonely thing, this pmr. Having down morning at moment. I've got this knee/leg problem too & hobbling around with a stick, seeing everyone go off for whatever their day holds & feel life is passing me by. Sorry for self pity! There are loads people much worse off than me. I've decided to stay at my 20mg pred, but keep looking at them and knowing rheumatologist said I had to go to 15 yesterday, is making me feel very unsettled. Worried she will say that if I'm not going to follow her instructions, she won't see me. Hope you are well & best wishes to everyone out there.
Does that mean you are off pred completely. Did you jump without a parachute or taper ?
Hello Pastit, I’m on 3 mg too having reduced from 20 mg at the beginning. It’s taken a while and I mostly now have good days, enjoying exercise and with more energy. However I know PMR is still there as I tapered too quickly to 1.5 and felt it’s wrath! I’m now tapering slowly (with endorsement from my GP) and hope to get Pred free at some point. Good luck on your journey. Thanks to Mark for his wonderful wit and for making me smile on the not so good days.
Hi Janet, it's the anniversary of 4 years on pred. It's been a slow journey but steady as she goes I think the saying is. Hope all goes well with you. Best wishes.
Thank you. Enjoy your holiday - but take a rest when you need it. I’m off to my niece’s wedding in the New Forest next week and golfing with my husband on the way down - haven’t done that for a while but a buggy will help.
Well done Mark, fingers crossed for you. I have just reached my Hotel in Italy, tomorrow we will visit Portofino hope I can keep up with my lovely wife 😃😎. Pete
MB57, don't be silly. I've earned the t-shirt. Felt great last year at 1.5. Triggered flare by attempting to get to 1 mg. Over a year later finally back to 1.5. Felt okayish. Tried 1 mg a couple of times. Mistake. Back to 1.5 after flirting with 2 and even one day 5.
Ohhh.. ok then Heron. But please remember that we all have differing health / PMR contexts: so I'll keep an open mind and exercise my best judgement in my own context - and from experience. As always, 'We'll see'.. ?
Either way, I'll keep you all posted - but thank you for your cautionary advice in the meantime
Thank you for the warning. I managed OK for a month in Wales on 2.5. On returning home to Oz I tried to taper to 2. Pains returned so I retreated to 2.5 and even took 3 to try to mop up the inflammation. Tried again to 2 1/4 but no joy so now had a couple of 5 days before heading back to 2.5 for a month I think. I did wonder if it was steroid withdrawl, arthritis or PMR so added panadol, but the pain convinced me I needed the pred,
When I was reading I thought it had returned to how it used to be while i was having trouble getting on here. .Didn't realise it was an old post until after I'd replied. Thank you..
Happy for you; sad at your elegaic tone. Letting go of those tubs and all that junk, not to mention PMR, might be more psychologically difficult than you realize. In my short time here, I have enjoyed your humor and the quality of your writing. I hope you linger rather than malinger.
Thanks Joanne. Yep, feeling better and letting-go of PMR actually is psychologically quite interesting and paradoxical - almost a sense of grieving for my 'old' PMR self?! But I'm not complaining..
Markbenjamin57 I am so pleased with your success and wish you continued good health. I haven’t posted for several months as I am going through a bad patch but have come out of my cave to say how pleased I am for you and how much it has given me hope. You deserve your recovery. Best wishes a Lindsay
Thanks Lindsay. Sorry to hear you've been laid low - I thought I hadn't seen you pop up here for a while. Try to keep your chin up and remember: 'This, too, will Pass'.... ?
I think it's all been said, Mark, but I'll add my best wishes. Glad you'll be staying around to give us some smiles and encouragement. I certainly need it this morning - on holiday in SW France, in bed looking out at the Pyrenees feeling utterly exhausted , instead of exploring them. Ho hum, there's always tomorrow. Keep up the positive vibes!
Merci beaucoup, Mark. Must admit I felt better once I'd forced myself into the Bar Basque and had an Assiette, a Kir Royale and a good book in front of me! (Hic)
Oh is this why I have suddenly become fixated with buying ferns and other pot plants for my house? Into charity shops for pots to put them in, my version of your faux leather tub collection. Don't leave us Mark, depression and loneliness is sometimes worse than the illness, we need your cheery posts x
I agree Chris. On the serious side, it's no wonder people with PMR / GCA & other chronic illnesses often get depressed - these things can hit us hard emotionally as much as they do physically....
Really pleased for you Uncle Bob. Thank you for all the encouragement you’ve given and will I’m sure continue to give in the future. Kind regards, Mike.
Thanks Monica, nice to meet you on Saturday. Yep, nice that people are interested in the psychological side of PMR / GCA etc. I think it makes a change from the very important but often complicated / technical stuff of medical research etc?
No, Tedski nor I never touch the hard stuff (or any 'stuff') when driving. Good idea about the bins - actually I HAVE collected about 20 of them and now wonder why I got so fascinated with them! (probably because they were on special offer...). I agree with you about the quest...
Mark, Greetings from France 🇫🇷 that is Superb News! I’m glad you’re hanging around to Welcome New Members & keep an eye on us Long Time Members, l get my Seven Year Badge next month (Of PMR~not belonging to the Group!)
Maybe ChrisMcT has the answer to your dilemma. The FLs would be perfect for conservatory plants. Perhaps you could advertise them at a local garden centre and start a trend. 😃
Well done Mark. You are at the place we all want to be at. Really enjoyed your talk on Saturday, and have a lovely photo of Tedski. Please keep posting. We all love you. 🌸
Mark I am too stupid to understand nuance. But I gather you are much better and the allegory is that you are sort of gently easing out of the group? I’m thrilled if you feel better. Delighted!!!! But devastated if it means seeing less of you. Linda xxxx
No Linda, even though feeling so much better I've no intention of walking away into the sunset. You Lot here have been the reason for my writing various Posts, producing my book and now doing talks around the country..
You absolutely nailed the description of PMR. Your post about feeling you were 50 percent of your usual self helped my decision to retire and I'm glad of it. I too have learned valuable lessons but wouldn't want to repeat the course. I have more better days and not as much brain fog but.....I will miss the excuse 😁
so pleased for you Mark and I know we will still enjoy your humour from time to time which I'm sure we'd all miss if you disappeared into the sunset! £50 for your collection!! That much!!😜
Jackie, I realised the other day that I've probably got enough material for Volume 2 of 'Write Me Funny..' nearly a year on from publishing the first one. I might try to get it out there by Christmas. So watch out... but DON'T TELL A SOUL. Fifty quid for the tubs? I'll probably have to give them away...
Congratulations and best wishes Mark benjamin57. Your second paragraph is so true for me. I so appreciated reading it this morning. It tells me that I’m not alone even though at times I feel like it. Nobody but another poly person would even know about all the symptoms you mentioned. Thank you and please don’t leave the group.
Yep, Lanakay. When I look back, I've visited my GP surgery more times in the past 3 years than the previous 57 put together. During the tough bits it can feel pretty desperate, it's only when you start to feel better that you realise how poorly you have been for so long. As you say, 'You are Not Alone' is very appropriate - and this community helps us to keep things in perspective.. :-). Don't worry, I'm not disappearing from the group - too much to ramble on about still ...
I’m so glad to hear you’ll be here. I understand about the doctor visits. I have been to the doctor not in the past two years than in the last 50. I am down to 7mg now and am feeling a bit better or else I just know what to expect now and it doesn’t come as such a shock! 🙀
Well, looking back, it usually does improve overall with time, but in what we (here in the UK) call 'Fits and Starts' - i.e. two steps forwards, then one step back etc. Or, as you say, we just become conditioned to it....
Dear Mark,your post really covered everything that is PMR,l am so pleased that you seem to have succeeded in beating it . Please don,t desert us,your posts are so informative and your humour much needed to cheer us all up.Tedski would be very cross if he was no longer mentioned on here too and would probably create havoc .All the best Mark,l look forward to your next ‘ ramblngs’ .........and Thankyou for all the previous ones.
Hi Mark: How wonderful that you are at the end of your PMR journey! And of course it’s also grand that it’s not the end of your participation in our PMR community. (Happily, my PMR journey “ended” about 1.5 years ago, but not entirely. In my mid fifties, I continue with a low level of stiffness and bursitis. This may be the vestiges of PMR or, the onset of another form of arthritis..still a mystery).
I found your story about the FL tubs so fascinating on so many levels, especially your effort to “validate their existence” as if they were endowed with a purpose equal to your own. I so appreciate your appreciation of how they served, at the right time in your journey, to get you out and about, focused and active in a balanced way, when it would have been quite reasonable to sit in a nice big easy chair and shuffle about the house. Here in Colorado, in my imagination, you were like a blood hound on a hunt, sniffing for the scent and the trail of FL tubs through 2nd hand charity stores and dusty antique shops, sometimes sitting with relief on a handy bench and at other times wagging your tail excitedly upon spotting the objects of your desire hidden behind an old lamp!
I am inspired by your recognition that these little objects of your desire have served their purpose in your life and that now is the time to thank them for their service and to let them go to their next stage of existence...and to whatever purpose may be next in their destiny. In so doing of course, you free yourself to embrace your new life, unencumbered with the need to fill the tubs, dust them, find an appropriate place for them, and otherwise spend time and energy distracted by the need to create a meaning for a symbol of stage of life that is now behind you. Perhaps you’ll keep a favorite set to remind you of the fun of the hunt and it’s healing influence on you. Or perhaps not.
I have been exploring my relationship with “stuff” for a number of years now. But I tend to let go of things from my past in small stages...like the peeling of one layer of an onion after another, rather than all in one big swoop as you are doing. Last weekend for the first time in years I was able to hike the Rocky Mountains again egged on by a bit of social pressure from friends. I was aided by a few doses of ibuprofen and there were some ice packs applied to my lower back in the days following. But I managed 12 miles of hiking and, as my smart phone later informed me, ascents equal to 160 flights of stairs. I realized its time to move on now to new adventures whatever that might mean for me and for however long this body and fortune gives me. And with that it’s time for a major “letting go” of stuff and things and symbols of the past. I have a charity coming to pick up some items next week and they will find 10x the bags and boxes waiting for them on the porch thanks to your post😊
I can relate to what you mean about 'low level' symptoms even when 'recovered' from PMR and at Pred Club Zero. As you say, maybe the PMR is still lurking in the system somewhere? And, of course, we are getting a little older on the Journey.
Yes, you've got it in-one about my excursions around the Charity (second hand) shops here. Whilst in the worst grips of my PMR and frequently feeling wiped-out energy wise, it was quite therapeutic to go hunting for bargains and have some sense of achievement. It has become a sort of ritual which I still hang-on to, despite having more important things to do now that I'm feeling better. And, I have picked up some very nice 'collectables' along the way!
As you say, passing-on these 'trophies' to someone else is symbolic of my transition to my new life, hopefully post-PMR. But I might just hang-on to a couple of them as a reminder. Psychologists say that material possessions, however trivial or un-necessary, often represent sentimental / emotional attachments for us in one way or another. For some of us, it's easier to let go of material things. For others, not-so. As I get older, materialism becomes less important. That said, I do love good Design and Aesthetics!
You sound as if you're getting on well on your Journey - and keeping very active. That's good, keep it up. Please keep Us Lot posted on your Journey too
So pleased to hear that you are in remission from the PMR beast. It's been a long painful road for you and I agree, this forum is wonderful for friendly 'face'. The members have a great ability to cheer up those who are low. We hold each other up on this difficult road. Now, what to do about your assorted Faux Leather storage tubs. I'm tempted to say set a bonfire in the back garden and leave them to it, as a symbolic way of saying goodby to PMR.
Thank you teesher. Remission from PMR has often seemed like an elusive goal but hopefully I'm more-or-less there at last. I agree with you about this forum - an invaluable source of expertise, support and good hearted humour, and I've no intentions of leaving it or my association with PMRGCAuk / this Community even when back to business as usual. In fact, having done the PMR Journey and with more energy, I can probably contribute more, and in better ways. We'll see..
As for saying Goodbye to the FL tubs, and all they symbolise? It's strange - I itemised them tonight (ok, confession time: only 11 - not 237 as per my usual wild exaggerations about such things), drafted a FB advert ready to post there, and then thought: 'Mmmm, do I really want to let-go of them?!' Ohhhh....
But Rationality Rules - and so I'll try to sell them for a few quid so that I can pay for Tedski's extravagant indulgences in such things as Boeuf Stroganoff, Vodka and Designer Clothes. He has an image to maintain after all. A bit like me..?
So pleased with your good news re PMR, just take it steady. Also great that you are staying around, as you can se from the comments on here you would be really missed. You cheer me up with your ramblings, here's to many more.
Many thanks, I just wish I could pass on my sudden and hopefully continuing (as always, we'll see..) 'recovery' from PMR to You Lot!
Yep, I WILL stay around here for a long time since becoming one of Us Lot has, in turn, launched me into the heady realms of now being an Internationally published Author (ha ha, 3 books sold in the USA and 2 in NZ - but it's a start), and a Conference Speaker. It's something I had wanted to do but I never dreamt that it would happen in these circumstances.
So, I owe a great debt of gratitude to PMRGCAuk and all here for encouraging me on my own PMR Journey - and I intend to repay it by sticking around and amusing (or maybe annoying?) you with more of the Stuff of Life in general. Ohh, careful what you wish for...
Isn't it strange how Life can work out for the Positive sometimes, and against the odds..? But I guess that's the central theme in my ramblings and natterings. 'This, too, will pass..?'
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Update after Ireland trip
