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.
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.
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.
I understand completely! I have Eds and Me/Cfs which is a common condition diagnosed in zebras. This maybe a problem for you as well especially if you've been having a sore throat a lot and when you crash with Me/cfs you have flu like symptoms and are tired for days afterwards. If I can help you at all let me know. I am on facebook and in a lot of the EDS support groups under Lori Newcomb. Sending love to you!
I haven't been diagnosed with anything yet, but have loads of medical issues and have loads of red flags for hEDS,. Just found out about eds... im trying to finish my nursing training,.. I'll have 2 13 hour shifts where I give it my all,.. then the next day I'll wake up totally crashed and fatigued, headaches, abdo pain, ibs flair ups etc, ill just want to stay in bed,.. then I do it again. A few days later when I have my next shift.. Im finding this so interesting cuz I definitely find that the more I do this yo yo from the boom bust.. I get sicker each time and it takes longer to recover,... But whenever I'm out of work... I start to feel alot better doing little bits for a few days and then more bits!!
@@KaityJane1995 do you have hypermobile joints. That is one sign. I know what it's like to want to do so much and just be so tired,it is so hard.i got through shift work a while back by sneaking naps,very short naps but my whole body felt sore
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.
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
Look, I'm not going to dismiss the science behind this, but "Who has the gun to your head making you do that?" I swear it's like these people completely forget we have to maintain employment. That takes every ounce of energy I have, so I get sicker and sicker. There is literally NO OTHER OPTION. Our living realities need to be heavily considered more.
I agree on the employment and everything. But I believe the point was to prioritise what actually does and doesn’t need doing, and his example was not making your bed in the morning which is obviously not going to lose your employment. At 22:23 he also addresses what you’re saying. Also at 24:57
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!
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.
I should be grateful as a newly diagnosed HMS and ME. I just feel that this is not treatment. It is just management...and a kind of management that blames the patient for not pacing enough or overdoing or underdoing. Not sure that everyone can succeed with it.
Has anyone researched Thoracic Outlet Syndrome (blood vessel being compressed in thoracic region, by various causes). YT channel, TOS MRI has many educational videos about TOS which has been a controversial diagnosis for last 10 yrs. It has lots of symptoms similar to orthostatic intolerance, headaches, painful use of arms and legs. I just discovered the syndrome which does have treatment. They say after treatment, far less pain and many ppl regain function of their limbs again. Please see if it fits anything with you or anyone you know. There is no research literature linking EDS and TOS...I assume because everyone has a hellish time getting diagnosis of either disease.
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
@@MK-mj9gx Registered. As above. As an acronym, it isn't R.O.T.; it is OTR. We have been teaching energy conservation using a more comprehensive approach with our clients for decades. We go further than this speaker because there is more to successful management of pain and fatigue than presented here.
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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.
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.
Same here, I have eds and I wish I could keep up with other people, I am jealous
This is immensely helpful, thanks so much, to you and Lara and everyone who helped make this possible
Yes, thank you very much! I got some valuable tips and ideas out of this presentation.
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.
definitely relate!
I understand completely! I have Eds and Me/Cfs which is a common condition diagnosed in zebras. This maybe a problem for you as well especially if you've been having a sore throat a lot and when you crash with Me/cfs you have flu like symptoms and are tired for days afterwards. If I can help you at all let me know. I am on facebook and in a lot of the EDS support groups under Lori Newcomb. Sending love to you!
@@lorinewcomb4717 thanks, I will look for you.
I haven't been diagnosed with anything yet, but have loads of medical issues and have loads of red flags for hEDS,. Just found out about eds... im trying to finish my nursing training,.. I'll have 2 13 hour shifts where I give it my all,.. then the next day I'll wake up totally crashed and fatigued, headaches, abdo pain, ibs flair ups etc, ill just want to stay in bed,.. then I do it again. A few days later when I have my next shift.. Im finding this so interesting cuz I definitely find that the more I do this yo yo from the boom bust.. I get sicker each time and it takes longer to recover,... But whenever I'm out of work... I start to feel alot better doing little bits for a few days and then more bits!!
@@KaityJane1995 do you have hypermobile joints. That is one sign. I know what it's like to want to do so much and just be so tired,it is so hard.i got through shift work a while back by sneaking naps,very short naps but my whole body felt sore
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.
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
Maybe try 5 minutes for awhile?
Look, I'm not going to dismiss the science behind this, but "Who has the gun to your head making you do that?"
I swear it's like these people completely forget we have to maintain employment. That takes every ounce of energy I have, so I get sicker and sicker. There is literally NO OTHER OPTION. Our living realities need to be heavily considered more.
I agree on the employment and everything. But I believe the point was to prioritise what actually does and doesn’t need doing, and his example was not making your bed in the morning which is obviously not going to lose your employment. At 22:23 he also addresses what you’re saying. Also at 24:57
Totally agree, and the modern medical industrial complex is all about extracting work from us, no matter how much it hurts or debilitates us further.
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!
If you click on the CC at the bottom of the video, TH-cam will generate captions.
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.
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.
Do contact our helpline team if you'd like any advice or support on fatigue management: www.ehlers-danlos.com/eds-helpline/
Wow!! Helpful. A lot to consider in a brief talk. Thank you SO much.
Thankyou this is helpful. Cam you provide a link to some template energy/pacing diaries please?
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
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.
I should be grateful as a newly diagnosed HMS and ME. I just feel that this is not treatment. It is just management...and a kind of management that blames the patient for not pacing enough or overdoing or underdoing. Not sure that everyone can succeed with it.
I want to try it, but my pacing for certain activities before pain or fatigue is like 5 minutes or less.
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
please stay at your baseline longer than 6 days! my Eds physio says min 3 weeks...
Thank you. I haver noticed that Cycle on my life. Im gonna try It!!!
Has anyone researched Thoracic Outlet Syndrome (blood vessel being compressed in thoracic region, by various causes). YT channel, TOS MRI has many educational videos about TOS which has been a controversial diagnosis for last 10 yrs. It has lots of symptoms similar to orthostatic intolerance, headaches, painful use of arms and legs. I just discovered the syndrome which does have treatment. They say after treatment, far less pain and many ppl regain function of their limbs again. Please see if it fits anything with you or anyone you know. There is no research literature linking EDS and TOS...I assume because everyone has a hellish time getting diagnosis of either disease.
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
i couldn't find the ME/CFS Diary app mentioned in the seminar, can someone pleeeaeeeeese post the link?
Try looking in the transcription or slides (listed in the video description) - bit.ly/3a5caQ9 and bit.ly/2j4jM0E - I hope it's in one of those.
How would i contact Jason Parry for advice?
im going to the clinic next month so will post a review on here :) I tried the fibro guy uk that didnt work
Could have used an OTR to explain how to adapt the activity and the environment.
OTR...?
@@MK-mj9gx Registered occupational therapist.
@@Cathy-xi8cb I know what OT means, but when you add the R what does that mean?
@@MK-mj9gx Registered. As above. As an acronym, it isn't R.O.T.; it is OTR. We have been teaching energy conservation using a more comprehensive approach with our clients for decades. We go further than this speaker because there is more to successful management of pain and fatigue than presented here.
@@Cathy-xi8cb Ah! That would be helpful for me, & some of my family also! How do I find one?