Up until November 2017, I was a young, vibrant, working, volunteering, active, on-the-go 63 year old, who felt (and behaved) like a 35 year old! I had had a 34 year long, successful career with a global financial company; got fed up and walked away in 2014. I am a trained, certified, insured end of life companion and worked part time at the Royal Sussex County Hospital as a Ward Clerk and volunteered at the local hospice, sitting with people at the end of their life. I went to work one day, developed a KILLER headache, and my life has not been the same since. I have been officially diagnosed with PMR & GCA, although my "numbers" have never supported the diagnoses. I went from 40 to 60 mg of Predniolone, in a week. Tried an aggressive taper down plan, that saw me at 45 mg for about a minute, until I crashed and burned and ended up at 80 mg! I am currently on 70 mg and flying high! I am working (ever be it very slowly) through the stages of grief and loss... because the old me, is gone. I only now, occasionally, RAGE against my circumstances, as I am learning to "get by with a little help from my friends," here on this site. Thank God for it and for them!
Oh... I'm American, but have lived in the UK for 8 years now. That's explains my writing style and use of profanity! 😳
"What is this life if, full of care, we have no time to stand and stare......." A favourite poem of my late Dad, and mine : 'Leisure' by William Henry Davies.
The opening lines of the scarecrow's song reminded me of this. Plenty of enforced leisure with PMR and GCA! Let's make the most of it before we're back to 'normal' lol!
Next weekend I'm planning to confer with some snowdrops, but hope I won't be consulting with any rain.
Thank you for your posts, mamaici1 - I'm sure I'm not the only one who looks forward to them.
I went to shout the dog back from her unauthorised sojourn across the gardens in my terrace and noticed the three massive bunches of snowdrops are in full bloom. Lovely.
The dogs latest escape hole has been blocked. Let's see where she gets out next. Grrrr. 🐕
Ohhhhh, I love that thought, "...conferring with some snowdrops." My most favorite winter/spring flower! I am honoured and humbled that you look forward to my posts, Rugger. If you are getting half as much from them, as I get from all of YOU, we are all richer. Xxx
If I'm going over the rainbow I want a pot of gold...
It is now my Sunday afternoon earworm. 😂😲
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Me too! My husband has no idea why I am singing/humming it, but just laughs. I gave the laundry an extra 16 minute spin out, and when I went to hang it up, realised I hadn't WASHED it!
If I only had a brain!
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I do that a lot. At first I thought it was good spin programme. Then having trailed it upstairs realised it hadn't been washed. With these new jingly jangly washers with electronic internals you cannot tell it has finished if you miss alarm as it turns itself off. Amplified by the fact that if I turn it on but forget to start the programme it turns itself off. Mind you better than my old one. Towards the end I had to rock it then bash it with an hammer to the tune of Scotland the brave...ok any tune will do but that worked.
You are only 63 mamic and have packed a lot into your life. I'm very impressed by your role at the hospice, helping people at the end of their lives. You will get back to 'normal' I'm sure of it, as we all will. And the self-knowledge you've gained on this journey will be a treasure for the future.
You have no idea Teesher! My journey thus far has been incredibly FULL and colourful! And yes I agree 100%, the Universe is trying to teach me more, first hand, about loss and grief... so I can be a better Soul Midwife/Death Doula.
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The brain does come back. I remember the 6 months from start of brain fog to dx were awful. I couldn't string a sentence together. Spent hours trying to remember what mule slippers were called for example. I couldn't get past them being called donkey slippers. Right area but had to describe them to my sister. At least i know what they are called now. Occasionally I lose my track now but only when I am really tired so "normal' sort of lapses. If you factor in you have GCA and pmr and on high dose pred you are amazingly articulate lol. The universe likes to teach us whether we like it or not. One of my best learning experiences was helping my mum get to the end of her life as she lived it,surrounded by family who loved her, so I admire your work as a companion.
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Hahahahahahahah! "Donkey Slippers," too funny!
And thank you for saying I'm "articulate" ( I struggle with it believe me!) and for admiring the Soul Midwifery work... it sounds like you've been there too!
My Mom was my very first end of life companion experience... we had some of the most amazing times in those last few weeks. That and then the experience with my brother, is what put me on this path.
We must be "soul sisters"! This is my all time favorite movie. This is no joke, I've probably watched the movie 30 times and can recite every line and sing every song. Thanks for the pick-me-up! BTW, I'm on the plane next week to go to Cleveland Clinic, #2 in Rheumatology in the States! I was originally going to schedule an appointment at John Hopkins but Cleveland Clinic doesn't require a referral. (Why would I ask for a referral from my Primary Care Physician who knows nothing about autoimmune diseases? Add "a dose" and a visit to an ENT and a Ophthalmologist who claim I have GCA and yet, prescribed NO freaking steroids!) I have a binder prepared with everything she will need! Will keep you posted and I'm certain on the flight back to Naples I'll be repeating...."there's no place like home!" Love and peace always!
Oh my goodness, BEST OF LUCK at Cleveland Clinic!! Which one do you go to? I cant believe the Ophthalmologist thinks you have GCA but didn't put you on steroids!!!!! I wish you the best... and will be sending calming, peaceful vibes you way... Stay strong and FOCUSED!
The trouble with brains is -they get overloaded at times. It’s good sometimes to let them rest..and as a saying from your home goes”‘smell the coffee”!
I know it’s frustrating when you can’t remember naff all! But give it time .....it will return, maybe not exactly to its former glory, but enough!
I absolutely love this song - found it on a Robbie Williams CD and I must say he does it full justice. I'd just like to say thank you to all fellow PMR sufferers, I really thought I was beginning to lose the plot (my son, bless him, says nobody will notice anyway) but now realise that it's part of the dreaded pmr - or at least I hope so! So onwards and upwards and all the very best to you mamici1 and everybody else. At the very least, I am in excellent company.
Never mind the brain, that disappeared a long time ago. I feel like the Tin Man when walking my little dog Daisy! Could do with some oil. Loved your post!!!!
Hirwaen, Yes, Yes! The Tin Man!!!! I AM HIM TOO! Now, let's see... The Lion was missing a heart, but he really wasn't. He had had a heart the whole time... perhaps like all of us. Brains that have failed. Body's that are creaky and in need of some serious oil, but still we show up here and laugh, and bitch, and console and empathise, and offer our hearts to others!
More oil required!! Just spent three days with grandkids, 7,5,3years old, we call the little one the Devil Child!!!Love her to bits, she's very funny but is the child on the floor screaming in Tesco's. I'm worn out!!!
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Taking the tablets... Am I the only one who's done this?
Wondering if I could of had a TIA/Mini Stroke?
Thoughts on brain fog?
I really have had enough!
