@jacky8887 Congrats on your progress! I have EDS too, and I'm convinced the only thing that has finally kept me from regularly dislocating various joints is consistent, moderate exercise. Keep it up!
F/34/5'7.5" [150 > 142.6lbs = 7.4lbs] 3 month Recomp, 1 month slight cut. PCOS and hypermobility/EDS
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@jacky8887 This is an awesome post. You're doing amazingly and I hope you keep up with it! I feel your pain (literally!)- last February I went from doing Barre twice a week, running once a week, and horse back riding when I could. Then I found out that I have a hip impingement, oestoarthritis, and my hip tendons are turning into bone. At the age of 30, I had to spend 6+months do NO exercising.
In July, I got cleared to ride (carefully) once a week- so I took up polo (much to my doctor's dismay). Now, I'm really riding once a week and facing the fact that in the next few years I will need hip and ankle surgery.
So it's really nice to hear that someone else can overcome their medical issues too!
In July, I got cleared to ride (carefully) once a week- so I took up polo (much to my doctor's dismay). Now, I'm really riding once a week and facing the fact that in the next few years I will need hip and ankle surgery.
So it's really nice to hear that someone else can overcome their medical issues too!
@jacky8887 Awesome post, thanks for sharing. You look amazing! You’re at my goal BF% and it’s super inspiring to see your results.
michaelwb67
New member
@jacky8887 Amazing progress and you look great! Really resonated with me as someone also on the autistic spectrum, with POTS and suspected EDS , who struggles with frequent injury and daily pain. I have four diagnosed family members with similar symptoms, but they are all much more hypermobile than me. Two are also autistic. Apparently EDS and autism are comorbid very often, although there’s little research so far into why.
@michaelwb67 Sorry to hear you also suffer with the daily pain and injuries. It truly sucks. On the other hand I am so glad to find someone else who ‘gets’ it. You are particularly special since you also will have some understanding of how the spectrum side of things can tie in with it (although no doubt our experiences differ, since - as they say - if you’ve met one person on the spectrum, you can’t make assumptions about the rest since we are all unique)
It is fascinating that there seems to be a fair few of us with EDS or connective tissue disorders whilst also being on the spectrum. It seems like this should be an important area of study. I might be biased though!
It’s so interesting to hear about your family. I am adopted so apart from my biological sister who seems to have zero issues of any kind with her health (touch wood!) (we share a similarly reasonably high IQ but she doesn’t show much by way of any aspie-ness, and no connective tissue things, no myopia nor teeth crowding that I had) ...I am unable to add to the anecdotal evidence since I’m not sure who else might have similar issues due to shared genetics.
As an aside : I have yet to reveal to my trainer that I am on the spectrum... yet I suspect he may not be surprised to learn it since he has been subjected to some of my incredibly detailed/long emails about progress/goals! Haha! Like many female aspies, people mostly can’t tell at first - I suspect a good bit of my obsessive traits in youth went into learning to mimic intonation, expressiveness & figuring out the unwritten social rules etc, plus I am definitely empathetic and emotional which contradicts what a lot of people think they know about people on the spectrum!
Thankyou for the kind words and support. I am glad to have ‘met’ you. Sending gentle hugs - only if they are welcome!
It is fascinating that there seems to be a fair few of us with EDS or connective tissue disorders whilst also being on the spectrum. It seems like this should be an important area of study. I might be biased though!
It’s so interesting to hear about your family. I am adopted so apart from my biological sister who seems to have zero issues of any kind with her health (touch wood!) (we share a similarly reasonably high IQ but she doesn’t show much by way of any aspie-ness, and no connective tissue things, no myopia nor teeth crowding that I had) ...I am unable to add to the anecdotal evidence since I’m not sure who else might have similar issues due to shared genetics.
As an aside : I have yet to reveal to my trainer that I am on the spectrum... yet I suspect he may not be surprised to learn it since he has been subjected to some of my incredibly detailed/long emails about progress/goals! Haha! Like many female aspies, people mostly can’t tell at first - I suspect a good bit of my obsessive traits in youth went into learning to mimic intonation, expressiveness & figuring out the unwritten social rules etc, plus I am definitely empathetic and emotional which contradicts what a lot of people think they know about people on the spectrum!
Thankyou for the kind words and support. I am glad to have ‘met’ you. Sending gentle hugs - only if they are welcome!
napolihawk1
New member
@jacky8887 Hey wow. This post is amazing.
I'm literally lying here with my hand in a brace from damaged caused by months of trying to keep existing normally after subluxing fingers (didn't know that wasn't normal and hands shouldn't move like that). Dreading my life being unable to work, hike or travel as expected.
Seeing people with similar diagnosis journeys and stories just killing it really helps.
You have done a great job. You look so fit and amazing. I hope you stay well and have as little pain as possible.
I'm literally lying here with my hand in a brace from damaged caused by months of trying to keep existing normally after subluxing fingers (didn't know that wasn't normal and hands shouldn't move like that). Dreading my life being unable to work, hike or travel as expected.
Seeing people with similar diagnosis journeys and stories just killing it really helps.
You have done a great job. You look so fit and amazing. I hope you stay well and have as little pain as possible.
@napolihawk1 And thankyou for such kind words and the encouragement - I am so glad it has been helpful. It is so good knowing we aren’t alone with these issues. Always happy to talk. 
@napolihawk1 I am so sorry to hear about your subluxing fingers, that sounds so incredibly frustrating & painful. I am so familiar with that sense of dread, it comes to me in waves at times.
Fear of the future is normal and particularly relevant when you have a chronic health issue that can inject a huge amount more uncertainty & affect your life so dramatically. Its a sobering reality check when our bodies hold us back in ways we never expected. I’m sure some pragmatism or Stoicism (as in the philosophy of the Stoics rather than the modern usage of the word) is no doubt reasonable when looking forward.
I’ve just been reading The Antidote and found the mentality of the Stoics - which I was first introduced to via this book - really resonated with me since they did not force themselves to only ever be positive, but believed in not giving power to the fear of things going wrong (which they inevitably do in life). The psychologist Julie Norem used the term ‘defensive pessimism’ saying that “Positive thinking, by contrast, is the effort to convince yourself that things will turn out fine, which can reinforce the belief that it would be absolutely terrible if they didn’t.” “Just thinking in sober detail about worst-case scenarios—a technique the Stoics called “the premeditation of evils”—can help to sap the future of its anxiety-producing power.”
I personally feel that we just have to take things as they come, be kind to ourselves when things don’t pan out as we’d hoped and remain as mentally flexible in our expectations of ourselves and our situation as possible. I really think it is important to allow ourselves to grieve loss of physical function, and I certainly allow myself some space to say ‘it’s not fair’ to release that pressure when needed.
I also have to be careful not to stay in that headspace for too long or catastrophise about the future too much, or else I face the very real possibility that I may create that reality through avoidance. As ever it’s a balancing act. I absolutely do not always succeed at this however! (Work in progress)
I too hope that you have as little pain as possible & your fingers give you some respite very soon. Gentle hugs!
Fear of the future is normal and particularly relevant when you have a chronic health issue that can inject a huge amount more uncertainty & affect your life so dramatically. Its a sobering reality check when our bodies hold us back in ways we never expected. I’m sure some pragmatism or Stoicism (as in the philosophy of the Stoics rather than the modern usage of the word) is no doubt reasonable when looking forward.
I’ve just been reading The Antidote and found the mentality of the Stoics - which I was first introduced to via this book - really resonated with me since they did not force themselves to only ever be positive, but believed in not giving power to the fear of things going wrong (which they inevitably do in life). The psychologist Julie Norem used the term ‘defensive pessimism’ saying that “Positive thinking, by contrast, is the effort to convince yourself that things will turn out fine, which can reinforce the belief that it would be absolutely terrible if they didn’t.” “Just thinking in sober detail about worst-case scenarios—a technique the Stoics called “the premeditation of evils”—can help to sap the future of its anxiety-producing power.”
I personally feel that we just have to take things as they come, be kind to ourselves when things don’t pan out as we’d hoped and remain as mentally flexible in our expectations of ourselves and our situation as possible. I really think it is important to allow ourselves to grieve loss of physical function, and I certainly allow myself some space to say ‘it’s not fair’ to release that pressure when needed.
I also have to be careful not to stay in that headspace for too long or catastrophise about the future too much, or else I face the very real possibility that I may create that reality through avoidance. As ever it’s a balancing act. I absolutely do not always succeed at this however! (Work in progress)
I too hope that you have as little pain as possible & your fingers give you some respite very soon. Gentle hugs!
efraim7praise
New member
@jacky8887 Amazing!
I love your detailed post, the graphs, the consistency of pictures. Your self-reflection of your progress is so thoughtful and real. You have made such great progress. Not only physically, though you have made great progress in 4 months. Coming to terms with what your body can and cannot do, pushing your limits in a healthy way and knowing which ones you can't push. It is hard to except limitations sometimes, but it looks like your are setting yourself for more great things through your fitness journey. I would love to see another update as some point.
I love your detailed post, the graphs, the consistency of pictures. Your self-reflection of your progress is so thoughtful and real. You have made such great progress. Not only physically, though you have made great progress in 4 months. Coming to terms with what your body can and cannot do, pushing your limits in a healthy way and knowing which ones you can't push. It is hard to except limitations sometimes, but it looks like your are setting yourself for more great things through your fitness journey. I would love to see another update as some point.
@efraim7praise I will definitely update again in future! Thankyou for such an uplifting, kind comment - I found myself feeling so warm & supported when I read this. What a wonderful gift to lift others up in this way.
Walking the line of balancing our limitations whilst still moving forward is I feel something we all have to do in one way or another. This process of accepting my ‘new normal’ is very illuminating for me in that regard.
Walking the line of balancing our limitations whilst still moving forward is I feel something we all have to do in one way or another. This process of accepting my ‘new normal’ is very illuminating for me in that regard.
joyceclaudy
New member
@jacky8887 As someone who also struggles with a lot of chronic injuries and pain, your post is exactly what I needed to read! Way to go taking care of yourself. And sorry about the shitty medical professionals who wouldn’t listen to you.
@joyceclaudy So glad this post was on point for you - I know how helpful it has been for me to read other peoples experiences so I am really happy to pay it forward in some small way.
We absolutely have to be our own advocates with medical professionals, especially with unusual issues. I am just trying to be careful it doesn’t make me too cynical and mistrusting of doctors since I know there are many very good, hard working, clever folks in medicine - it really put me through the mill though & shook my trust substantially!
Sending gentle hugs & hoping your injuries and pain give you a bit of a break soon
We absolutely have to be our own advocates with medical professionals, especially with unusual issues. I am just trying to be careful it doesn’t make me too cynical and mistrusting of doctors since I know there are many very good, hard working, clever folks in medicine - it really put me through the mill though & shook my trust substantially!
Sending gentle hugs & hoping your injuries and pain give you a bit of a break soon