Thank you so much Greensleeves. Communicating such helps but even now I am welling up just thinking of it. PMRpro was right all those years ago when she said I was greiving. I still am every now and then. writing helps but can't change the cruel truth.
Communicating with people who understand does help, we’re all going to have down days .
Feeling emotional may not be how we want to feel, it’s like a release to let those emotions out .
Please keep writing your poetry and remember you’ll have better days. It doesn’t feel that way, but nature itself gladdens the heart. The Winter night sky on a clear night, feeling the sun on your bones on a glorious Summer’s day .
We go from one phase to another on this rollercoaster ride.
In the meantime keep writing and sharing, you have quite a gift .
I think you were right again. I'll look into it. My cycling friend up here has one he is prepared to lend. I'll also investigate getting my best bike converted. It's basically a new set of wheels and a battery pack which fits into a bottle cage. Maybe sell a couple of bikes to cover the cost.
E biking has been liberating for us. Cornwall is so hilly! Even my hubby gave in in the end after I kept overtaking him on the hills 🤣 We both cycled about 350 miles around France last autumn. France, as you know, loves cyclists however getting heavy e bikes on & off trains was no fun at all! So next time I hope we’ll stick to routes where trains are not needed! Yesterday I bumped into a friend with her arm in a sling after a car got too close to her & she fell off. Very nasty break. That’s the worry. Still we must keep going. 👍
Come here to the valley in northern Italy where I live. Our trains are accessible with bikes as long as you choose the right station!!! Some stations don't have flat access but most do, And we have wonderful cycle tracks - you can cycle from here to Venice I believe! And pick up and drop off hired bikes as required to be able to catch a bus.
What a great idea! Funnily enough we are going down to Puglia next week. Me for a Pilates retreat & OH for an e bike trip right down in the south. No trains involved!
Yes, it is difficult, made more so by the years passing at a seemingly faster and faster speed. Take heart that your poems lift the spirits of others and have the power to amuse, empathise and help accept the muddle that is living. Xx
thank you. I read your poem & bio to my 78 year old husband who is cycling on an e bike in southern Puglia next week. I’m praying he meets up with like minded folk & doesn’t have an accident! He sounds very much like you! Won’t give in & works hard to keep fit finds his PMR affected wife a bit of a mystery 🤣 Good on you though. Take care & keep on keeping on 🚴♂️
That moved me Pollyanna16. I hope he keeps trying. I have been married 44 years and with her for 47years. Truthfully she is still a marvel to me and a mystery. I have no idea how she has tolerated me so long.
Sending my thoughts. My husband is also trying hard to appreciate, understand and work with the change in our relationship. He is now the strong one., training for a half marathon and picking up what I struggle with. It's a grieving process for what we had for 48 years, now we both need to readjust to the change in the goalposts.
That is a great bit of rhyming despite the sad story it tells.I do hope you are managing a different type of cycling these days and have not put the bicycles into storage. Maybe the kind of race riding you describe is out of the picture but I hope you can still enjoy getting out on two wheels in company.
I know where you are coming from though because a year ago I sold my wonderful driving pony to a new home because the fatigue was getting too much. When PMR came along in 2016 it was the pony that kept me fighting back against pain and brain fog and gave me a QOL. I stuck at 8mg pred for four years in order to remain active with him, it was only when I knew I had to get to a lower dose that I realised my thirty years owning horses had to end.
We parted company on October 17th last year and my life has taken a strange and unwelcome course since then but the pony has gone on to give great pleasure to his new owners and that makes me happy.
Thank you Zebedee44 for sharing this. You will bounce back like your namesake. I am not cycling really at all let alone with my friends. I fully intend to get back to social cycling with friends when my body permits. Down to 2mg and reducing shortly so there's hope. In truth I am physically unable to do the routes due to steroid induced myopathy. Three and a half years wiser and stable I sometimes think that I never needed this because I am ok now, but that's the irony. Without it I would be still encased and swamped with pain and in all likelihood blind and deaf. My dear friend Max Pendleton is now in a hospice and another Carmelo Luggeri has just had his spine skilfully bored to release the nerve pressure. His was successful and back cycling and gigging but Max sadly won't recover. I'm lucky really and who knows, in some close future I may be wheeling my way again. For you riding may be over but life isn't and some recovery is always possible. Maybe take on an older horse who can't deliver any more but needs care and friendship still. Keep hoping
This thread has lifted my spirits. I felt sad and wrote the poem about my life cycling and this disease we suffer and its effects both mental and physical. Now many have responded and engaged in positive constructive and supportive suggestions. So much so , that you have finally managed to convince me to go Ebike. I have researched an economical alternative to just buying another bike , which to be honest , I could have done 3 years ago. I didn't, and should have. So, thank you all.
Yes but I believe these are mostly very cheap models if you look out for a Bosch battery you shouldn’t have a problem 🤞 plus their mileage range is excellent .
Morning Cycli, I think an e-bike sounds a brilliant idea, if nothing else it will work as as a stand in, until you are able to start strengthening those muscles again and get back on your old bike. Think you need to start collecting/keeping your poems and put them together in a poetry compendium. You could get the charity to sell them as part of their fundraising. Take care and carry on keeping us smiling with your poetical skill and wit.
No idea on e-books but if the charity want to publish them to raise funds I give them permission to do so. I'll even write some on request if people have an idea of the area of concern. To be fair though, some topics would be difficult to write about as I think you would understand. Could be quite funny though.
Yes, this disease is a pest, but my E-bike gives me more freedom, and when the wind's in my hair and the track goes through the green places I can feel a sense of normality for a short while.
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incorrect dose of prednisolone?
Tight leg muscles, is this a new stage of my PMR?
Cannot Seem to Taper At All
Have a wonderful holiday and bye-bye 2020~!
We did it! Team PMRGCAuk completes the Carrots Night Walk
