I thought I would just provide an update about my transition to the swampy depths under 10 mg.
Think I had said that every time I tried it I was a hot mess emotionally greetin' for no particular reason and looking back, verging on psychotic.
I've been following a version of the lovely Dorsetlady reduction, thanks very much for sending the spreadsheet to me. I did say I had tried to reduce under 10mg three times without success. Pain was bearable but the depression was not. I also said I visited a music specialist GP ( as I'm a singer and singing teacher). She sensibly worked out that if it was only the emotional spiral down that was holding me back then why don't I take an anti depressant to plug that gap to allow me to come off the necessary poison which is Prednisolone. I agreed to update as there were was a long year where I didn't even have the capacity to engage with this (which I can now see is a ..) valuable community.
I can report that I have toggling between 10mg and 9mg with apparently great success. I have been on the fluoxotine for a couple of weeks before I tried the reduction. I have to report rather than the Tuesday of Hell that I experienced before I feel great. No downward spiral, uninvited and unexplained tears. I felt a wee bit tired at first but now I feel great. Yes, did you hear that, feel great!!! I actually feel GREAT!
I've been attending business gateway workshops and seminars to develop my my ideas to help people with performing nerves get up and sing (especially the ones who tell me they can't sing). The reason I am able to do this? When I am singing or teaching singing I am completely symptom free. I also want to raise awareness of PMR and Auto immune condition, trials and tribulations. To find out if I can in some way help. I thought my life had ended when this happened to me. It is now quite the reverse. I now feel this was meant to give me a sharp kick up the butt to make me let go of the stressful day job and do what I love. My health was giving me that signal for a long time I now realise. But it had to be something major to make me act on it, or so it seems.
I realise that some things give you energy and some things drain your energy. Singing will give you it in spades if you let it. The main issue for those suffering chronic fatigue is to be motivated enough to get there for your natural chemical high of 'endocanabanoids'. Look up Dr Mosely (Spelling?). He did small studies to check out this new neurochemical and proved it gives you more than a 'runners high'.
Note of caution. I know I still have to manage fatigue and I know I am not out of the woods yet. I just want to say I am really good just now. I'm excited for my future and maybe I just might work myself up a living and a retirement plan.
You were always present when I couldn't be. In the darkest days when being permenantly absent from life was looking increasingly like an option.
Thanks al
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Singr
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~Lovely reading your post Singr - I can not thrive without my music & went back to singing lessons before finally diagnosed with PMR Jan 2015. I even disciplined myself to practice daily at my piano, something I could not enthuse myself to do.
Both activities short lived as I still focus on just getting through day to day + watching over stoic husband quietly battling pesky cancer.
Your post gives me hope - I am struggling with other health issues but not going to give up on my constant health challenges - I cope fairly well just living day today.
Please keep us in the loop & sending abundant blessings your way for a lovely Easter~
Thanks for your reply. If there is one thing I've learned in this process it's "do what you can" but make sure you do things that energize you to balance the negative impact of this pesky condition.
~Yes absolutely & I am only recently realizing that I'm inclined to give out without gentle consideration of perhaps fitting half an hour just to do something of meaning for myself - feel so much better for having done this if I make a point of doing this each day~
Fantastic post, so positive. I'm off to have a good old sing in the shower and then once the Pred kicks in take the dogs for a gentle walk. Even though I dread it I always come back feeling so much better, I can't go too far but try to push myself just a bit more each time. Positivity is everything and it sounds like you have it in bucketloads.
That is so lovely to hear that you have found a way through.
So much of what you say has echoes for me. We sometimes have to learn the hard way!! I too love singing and do as much of it as I can. I have not been doing much recently as pain has been too great, but am hoping to get back to it ASAP. I especially appreciate singing in a group- I really feel the sense of community and joy.
Keep going on your journey , learning to ask for help and recognising what gives you joy as opposed to what saps your energy.
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