One day I will dance again - One day I will walk further than I can do now - One day so called friends will apologise for calling me a cripple, yes a cripple. Really???
BUT you look ok UnicornDancer!! How many times have any of your good selves heard this??
Yes I am having a little rant, because I feel it is safe to do so and because I know that I am in the company of people who will understand, phew, I feel better already and looking forward to some lovely communications with you all.
Hi and welcome,
Yes you will dance again, and walk the socks off your so called friends… and if you can’t rant here, where can you rant….
Would be nice if you could put a bit more info in your bio though please, then we can know a bit more about you. …
Thank you so much. Yes I will update my profile tomorrow - I feel surprised when people are interested as I am usually the stoical one who listens and can "solve everyone elses problems" Not often I have someone to turn to, although I feel this site is going to be mightily helpful!!
It will be, and that’s because we listen too…and more importantly, understand. 🙂
hi UnicornDancer! You are not alone! This forum is superb. Rant if you want to. Ask any “silly “questions , cos they aren’t, I could not have been able to cope for the last two years without these friends. Now down to 1mg with a grin on my face. Keep strong!
This site has been a game changer for me. I don't have the experience yet to comment on posts but I thank God every day I found it. Everyone in the group is so supportive - especially, of course, the experts like PMRPro, Dorset Lady and the others whose names I can't think of right now. They have guided me from a place of total ignorance and fear to understanding "it is what it is and I'll get through this - just like everyone else." No question is stupid in their eyes and there is no judgment. Currently living in Mexico where my rheumy has only experienced 3 PMR cases and they were "snowbirds" who returned to the US or Canada after 6 months, I had many questions and concerns. Just by logging in every day, so far all of those have been addressed. Sorry is this sounds mushy - as a Scot I have a certain reputation to uphold, lol - but I just want to say again how important this support group is to those of us who were floundering. Thank you.
Of course you will. My arms were so weak I couldn’t pull myself up the bed or lift a cup off the table. 9 years later I have been looking for tigers in the Indian Jungle, Australia, several states in the USA and loads more places. I go to the Theatre, Ballet, Opera and fine dining.
As Dorset Lady says let’s have some more information about you. I often have a rant so you are in good company. You are in the right place
🥂
Thank you so much - I could not butter a cream cracker, nor take a yogurt out of the fridge, excruciating to say the least. I will try to update my profile tomorrow - not used to me being top of the tree !!
But you look ok…
Oh yes, loads of times. Hard for people to understand. Love your opening paragraph. Dancing, walking further, totally get that and it will happen UnicornDancer. You will dance again. As for calling you a cripple…words fail me.
Words can wound as much as a sword cant they - lets hope awareness is spreading. I will remain optimistic!!
Who are these frightful people? Lose them! Apart from what planet are they on? As PMRPro said, there are a lot of places poles and sticks are normal. Walking in the country. My father always went walking with a fine stout stick, long before he needed it.
Hi and welcome. Calling you a cripple is so far out of court as to be on another planet, but sorry I got lost somewhere, why did they do that when they think you look OK?
Hello there - I sometimes use walking poles, although not all the time !! There is also an element of their denial, I think, as I am often the "go to" person when others have a problem and no one seems to want to acknowledge I have my own health things going on!
If that was all then half the population and tourists here would be called cripples - while walking up a mountain for fun ...
I used to use poles - just wondering if you or for that matter all the tourists in South Tyrol know you can replace the normal rubber tips with little 'bootees' covering a larger area which I found more stable!
Walking poles sounds like a good idea - forget exercise (too knackered) I'd use mine to prod the GP/rheumatologist !
Or the name callers !
do you hire yours out, I’d like to to prod my GP too, although as no f2f appointments are given I may have to resort to banging on the telephone receiver with them 😄
Oh yes, "You look well" so you can't be sick. I think it's possible to tell a person they're looking good, a compliment, while still acknowledging that they're ill. And using "cripple" as an insult or in mockery is the sort of behaviour we should have been trained out of when in grade school.
Have a look at these stories:
Yes I've just had someone tell me I look ok.Urgh! And I've been through the name calling too.Quite upsetting. I wish I didn't get so tired.I am getting stronger slowly which I'm very grateful for but it is a slow process. If I overdo it my body will tell me.!
” not used to me being top of the tree” maybe one of the reasons you developed PMR , always being there for others and putting yourself last.
Now is the time to put yourself first which doesn’t mean not helping others but being conscious of the fact that you need rest and you need to pace yourself which involves sometimes saying no to others, something that often seems alien to some of us.
Those that relied on you won’t like this, you will no longer be at their beck and call, this is where I feel you see your genuine friends who are concerned for you against unfortunately the ones who want you to constantly “ give” to them.
Embrace this new way of approaching things and I’m sure you will find a freedom in it. 💐
I like the positive attitude. I've been ill for over twenty years with people judging me and the not so original "you don't look ill just get up and do things" In the meantime for now I look for other things to do that maybe I wouldn't if I was able to be out walking or more active at home. I've taken up reading again, done a couple of paintings and written two poetry books that I self published on Amazon. I am now writing notes for a book about my journey through my illness and treatment by doctors and other people around me. You'll show them one day, hopefully we all will.
so many wonderful replies to your post. I feel they speak to me too. Thanks to you and everyone who has shared on here.
Yep , I hear you , can't make some friends see sense , and can't find enough space to bury the bodies! I have a great badge at the moment it says , " Please offer all advice in writing , it's much easier to ignore"
note my diagnosis is Stills Disease which for me manifests as RD with some similarities to PMR symptoms hence my appreciation of HU. Stills is invisible too, some days I can’t open doors or lift mugs of tea, I was diagnosed aged 17 now 61 and have become immune to horrible comments in fact it rather amuses me to ask people to open water bottles, press lift buttons etc when I’m out, when I say “arthritis “ they look dumbfounded. Days when I’m using wrist supports or knee braces it’s visible and people occasionally offer help but less so these days. Strange world isn’t it.
Positivity rules 😃
And yes, I will swim again!! Getting …hopefully!…towards the end of my PMR/GCA journey (now tapering 2-1.5mg) and at last, I have the energy to swim! I used to swim regularly but not done it for ages so today, I came to the pool with determination! Go girl, you will dance again!
My PMR began last July and I couldn't get out of bed or off the toilet or wash my hair. Was in such pain I cried in bed at night. Fast forward a year last weekend I was dancing! You will get there. I'm now on 7.5 mg pred and have a ways to go.
But I do hear from people "you are STILL on prednisone?" which irks me to no end. I've learned when talking to people with illnesses to just say "how are you?" And mean it!
I understand! I went from crawling to lie on the ground to weed a flower bed to playing pickle ball three times a week. My one question is always How come I went so long undiagnosed. The joke is my dog was on prednisone, so I had the pills in my hand every day!!! Good luck, don’t give up!!! Check what your dog is taking!!!!!
hi Unicorn dancer!
I’ve just danced at my daughter’s wedding on Saturday - a fast jive with my husband, centre stage and applauded by all the young ones! It felt wonderful and no nasty repercussions! 2 years into PMR and on 7.5 mg, struggling to taper but hey there are good times in between. So yes, you WILL dance again and keep us posted when it happens for you.
There's nothing like a good rant; please consider this another one!
Well done for remaining hopeful. In the long run, that is the very most important thing.
My granddaughter would love your user name!
Thank you - yes I am a great Unicorn Fan!!! I bought a large unicorn toy and only realised after about 3 months that it lights up and sparkles when pressed near its tummy!!! Great fun!!
Yes you will dance again, and walk again and enjoy your body again. And so will I, I am inspired by your determination and positivity and you've helped me get out of a pessimistic place.
Oh thank you this makes me feel so much better also!! Been having some low moods bafore finding this site, happiness all round - emotional health is on a par with physical health isnt it. Lets keep supporting each other
Totally with you. I miss dancing the most. I used to dance on the stage, at parties, at salsa classes, at ballroom dancing lessons. I did dance again in in Spain. Two dances but I felt elated. Shattered the next day but I was so happy. You will dance again. Keep that thought.
Thank you - I had a little practice the other day dancing with the kitchen chair!!! Onwards and upwards !!
Don't give up, it will get better! I love to dance, sometimes I just put on the music all alone in the house (not when hubby is around mind you) and then gently dance all by myself. Not all days but many!
grieving my old life, and learning to "dance"
It's time to take a leap....
Rheumy nurse looses the plot (I think)
Anxiety again 
Need advice again
