Jason Parry - Practical Pacing and Fatigue Management
15,143
Published 2017-10-17
All Comments (21)
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I have deconditioned a lot the past 2-3 years, and finally feel I'm at a point where I can start trying to work on it. This is definitely helpful! Also, his humor was completely lost on those people. I appreciate his dry humor and am glad it was interspersed in there to break up the feelings of getting overwhelmed of all the things to do.
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This is soooooo helpful, and wish I’d followed it years ago- have Eds and severe degenerative Kyphoscoliosis, etc etc only recently dx for EDS... but have pushed and over pushed my entire life, and then suffered immensely following days.
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This is immensely helpful, thanks so much, to you and Lara and everyone who helped make this possible
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Wow!! Helpful. A lot to consider in a brief talk. Thank you SO much.
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I have eds and have crashing fatigue, I have been fired from jobs because I love working but I cannot keep up with others.i kept trying to work harder and push harder, thinking maybe I am lazy.i am able to work doing photo shoots, but not every day.i want to make a difference in the world but my body is telling me to rest.it is very hard.i wonder if other people feel this way.
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I was diagnosed with cfs/me 12 years ago. Now it seems I may have EDS or possibly hsd. I have been told to find my baseline and use pacing to stop the boom/bust cycle. I have asked so many times over the years how to find my baseline and no-one has ever explained. I found this video today and bingo! Thank you so very much I now feel confident that I now understand both finding my baseline and pacing.
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I wish my Physio was anywhere near as aware as you are concerning hEDS. There needs to be more training and awareness in the UK.
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Thank you so much for this video. I have fibromyalgia and a lot of what you said makes sense. I am definitely going to try everything you suggested! x
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Thank you. I haver noticed that Cycle on my life. Im gonna try It!!!
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Please would you caption for those of us with EDS who have been Deafened by it??? I have written to the EDSociety and still, no access. I and others with EDS who are Deaf/HH really need the information too. Thank you!
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He mentions that with pacing, you should stop before the pain starts. What about when pain is immediate? What could be my baseline then? I'm assuming having a baseline of 0 seconds is not acceptable
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Thankyou this is helpful. Cam you provide a link to some template energy/pacing diaries please?
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Anyone know how to get access to a time management graph? I could make one, but I think it would be easier to use the one he did
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im going to the clinic next month so will post a review on here :) I tried the fibro guy uk that didnt work
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please stay at your baseline longer than 6 days! my Eds physio says min 3 weeks...
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Thank you! I feel sooo bad, tired, in pain, helpless depressed, and frustrating, that if I have a better day, I do the more I can and more again. I know it's stupid. So I will take a notebook, define my baseline. And I will find little rewards for each week I improve.
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This is good info. but how realistic is this in the real word. I have to work, I have to pay the bills or I would be homeless.
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How would i contact Jason Parry for advice?
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Is anyone able to advise me? On my worst days (like today) I can't even sit upright or go to the loo, so it would be impossible to test my baseline for activities at this point, because when I'm like this, I often don't even have the energy to watch a film. When SHOULD I test my baseline instead? Or what can I do to improve my bad days enough to be able to test for my baseline? Many thanks to anyone with answers. x
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i couldn't find the ME/CFS Diary app mentioned in the seminar, can someone pleeeaeeeeese post the link?
