Відео

🏳‍⚧🏳‍⚧🏳‍⚧ Honestly I've gotten to know the trans community through my work with patients, and using inclusive language as much as I can is something I will ALWAYS try my best to do. I will inevitably get it wrong occasionally (words are tricky sometimes, and it's hard to change old habits!) but I try my best. I'm also always open to suggestions/feedback, so if you ever have any tips feel free to email me at alex@hypermobilityhq.com. I generally just stick with anatomically-based terminology to keep it as inclusive and clear as possible in terms of communication❤

@@hypermobilityhq You're doing great! Thank you for caring. Don't worry about getting it wrong sometimes, (we all do, even trans people lol) what matters is that your good intentions are there

I'm so sorry for what you've been through, and unfortunately your experience of delayed diagnosis is the norm. Honestly, an earlier diagnosis (or at least identification of hypermobile connective tissue) generally will result in better symptom management because issues can be identified before they progress and injuries can be treated before they worsen. But it's important to note that even though you have a mixture of pain theoretically some of it will still be treatable (or at least manageable)❤🙏

@@hypermobilityhq thank you. Your videos are very helpfull

A lot of hypermobile people are also neurodivergent, and sensory issues are common in this patient population. For summer clothing I try to think of temperature (because overheating is rough if you're hypermobile and struggle with regulating your temperature), compression (compression socks and yoga pants can help with blood pooling, BUT they feel really uncomfortable when it's hot outside), and swelling/lymphaedema (a lot of hypermobile people will have blood pooling in their legs especially in the summer, so trying to look for clothing that is seamless or that has wide seams can help). Did that answer your question at all? I hope it helped❤

@@hypermobilityhq so its more how it feels around my body then actually how tight it is? I do wear compression socks at work they are amazing and just had some special arch support for my feet to give me more stability. Wil try looking in some capri yoga pants for at home

Hey! Sorry for not replying sooner, the last few weeks have been particularly hectic for me. I'm SO happy that you found my content online (and that you've found it helpful!). Thrilled to know it has benefitted your friend too🥰 The next podcast episode will be out this week, so keep an eye out for it! 👀🤗

Hey! Sorry for not replying sooner. The last month was super hectic, and although my health is generally pretty good I unfortunately felt unwell for a lot of the last few weeks (I'm feeling better now though). I'm so sorry that you didn't have this information when you were younger. I PROMISE you that I will keep going with this. The next episode is out this week, and I'm talking about posture ❤

@@hypermobilityhq I see, I feel you, take your time and I’m happy to know that you’re getting better with your health. I hope the best wishes for you 🙏. I’m excited to watch your next episode and I’ll be tuned to watch it 😊

Thank you SO much!♥

Bianca! I'm SO sorry for missing this comment (and thank you for taking the time to write it out!). And yes, the peer-pressure of environments like some Crossfit classes or group classes can be REALLY problematic💯 Luckily I seem to be immune to peer pressure in that setting but I'm very aware that it is in large part my professional expertise that gives me the confidence to say to the person running the class "Actually, I'm not doing that movement and instead of this I'm doing this thing instead. And I'm taking it easy because I feel awful today." But speaking up like that (and then sticking out in a group setting) isn't easy to do, and it's something I certainly struggled with when I was younger ❤‍🩹 Your setting in your gym of having the group class on a screen but being able to exercise in private sounds AMAZING! If it's a big chain gym I would love to know which one (so I could direct people to it, in case they have similar facilities in their other locations). And what you said about explaining things is so true. . . before class I'll often be warming up in a certain way or doing certain things that my body needs, or wearing braces (my wrists are really hypermobile) and it does get tiring having to explain over and over what I'm doing. Luckily for me I'm a pretty chatty person though and obviously this is my passion, so I generally don't mind explaining to other people why I need wrist braces/wraps sometimes (and you'd be surprised how often that ends up being the moment that they realise they need wrist support too 😆). The thing I find hard, as you mentioned, are the days where you just have to pack up and leave. Even though I know I'm not a "quitter," it still feels a bit like I am, and it's so hard to ignore that judgemental voice in my head😢. All of this stuff is far from easy. And yes, as you said it takes sooooooo long to make meaningful progress in terms of building muscle mass. But, if it's possible for a person who is hypermobile, the results are SO worth it. It took me 5 years of REALLY hard work to get to the point where I felt secure in the function of my body (it took about 2 years for me to feel like I had made significant improvement), but I'm so grateful to be where I am and I will always try to do everything I (safely!) can to protect my muscle mass. CONGRATS on your progress, and on your success finding a way to safely build muscle in your uniquely hypermobile body. We are all so similar but so different, and I always love hearing about everyone's different journeys❤

@@hypermobilityhq No worries, no need to justify, between life, work, and health, we have a lot on our plates 😊 And thank you for such an encouraging comment 😊 For the gym, I go to Basic Fit which is a Netherlands based brand and they have gyms all over Europe (I'm in France), mine is about 10min from my home which def played into my choice, but I actually really like the video lessons in a dark mostly empty room, it takes off any pressure and judgement. Sure, sometimes another person is present for the 5pm Barbell video lesson let's say but even then, I never feel pressure to do the lesson, and do so at my strength and cadence. I feel like they may retire those video rooms some day in the future, so worth checking in if a particular gym has them or not. And it is hard to say, I'm sorry, I'm not doing that exercise. I'm on the overweight side too, and people think I'm being lazy. When I was hospitalized, we had to do PT sessions which were crazy workouts. Not only did my IV canulas slip out every session which had the nurses struggling to find new veins since IVs blow out my veins which started to get painful over time (nurses started to get really angry at PT and told me to not do exercises if the IV slips again) , but also the exercises weren't good for my issues, so when I refused an exercise, I was treated as a lazy person. When I joined back for the next exercise, the PTs told me, oh, you're *that* mobile, which had me just reply back, told you so.... Because my few muscles hardly show over stretchy and overweight skin also. I didn't have my hEDS diagnosis at that time yet so I was at a loss explaining my issues, but even with one, it's tiring having to explain that laziness in general doesn't exist. If a person refuses something, it's probably not laziness. Pain doesn't show and those people don't have to go back home dislocated in places, having to fight to go to sleep etc. I'm finally at the point where I care less about those perceived opinions, I need to look out for myself first, but it took many injuries under social pressure to get there now.... Loved your comment though. I keep doing PT several times per week for 2 years now, but I struggle going back to the gym, currently haven't gone back in a few months. It's hard for a normal person to pick up a habit, but being prone so easily to injuries, makes it really hard. It def helps our bodies and minds, but coming off a period of constant subluxations, fear def kicks in for me. I'll start going back soon, take super tiny baby steps to get my body moving the muscles again, and rely on braces and compression this time round ❤️ Thanks for all the ressources and hard work put into your social media, it helps out many peeps 😊❤️

Aw thank you!! I'm excited to be doing more content on here this year (a UA-cam series that ISN'T the podcast should be out within the next few months). Is there any content that I haven't done yet that you would like to see more of? Always happy to take requests 🤗💕 Also, what did you think of the episode?

It's so, SO important. Relatively uneventful births DO happen for some hypermobile people, but it's so important to know what can happen just in case it does. My mum had two precipitous births, and luckily because everything with her births was straightforward it was all fine in the end, but if there had been complications I can't even imagine how scary that would have been (and I've heard so many stories of absolutely awful experiences from members of the hypermobile community). The thing is, many of the issues that end up happening can be prevented, and we need to start valuing hypermobile people and making sure that every member of the healthcare team of a pregnant person is educated on this. Pregnancy and hypermobility is one of those issues that we REALLY need more awareness about❤ The good thing is that if your children end up ever being pregnant they now have YOU in their corner to help support them🥰

@@hypermobilityhq I also had two precipitous births. The second go around I tried to tell the nurses that my labor would go fast. They didn’t listen. I ended up getting my epidural very late. I was almost dilated 9 by the time I got it. My babies came out so fast that I had tearing.

Thank you so much for taking the time to let me know that my content helps you🙏. It truly means so much to me (!!), and it's what gives me the energy to keep going with all this. Are there any topics you would like me to cover on the podcast in future? I have one more episode planned for before the holidays (possibly 2) and then I'll be changing things up slightly for 2024 (hopefully with WEEKLY episodes, although this depends on whether or not I can sort out some editing issues that I've been having recently)❤ Also, are you signed up for my newsletter? I'll be throwing a Hypermobility Holiday Party on there in December (still finalising the exact date) and I've opened up some invitations for people from outside the membership :)

Hey Doug! Thank you so much for taking the time to comment. It would be cool if UA-cam allowed photos in comments (who knows, maybe that will happen one day!). "So comfortable, but even then for only 20minutes at a time" is such an apt description of what it's like to find a comfortable position for a hypermobile body. And your body is ABSOLUTELY made to move (but not too much, and never in the wrong ways 😂). And I agree that standing is the worst. Your solution of trying to do calf raises is a great way to try to activate something called your Calf Pump Mechanism (basically it's structure that affects venous and lymphatic return, and it works when you squeeze your muscles in order to force blood and lymph back up your body). Anyway, I'm so happy you enjoyed the episode and thank you for leaving that comment! 💖

@@hypermobilityhq Thank you for the kind reply. I look forward to your new videos, they are so very insightful. I started doing the calf raises as a way to keep my muscles engaged and active posture intact when idle. I noticed I otherwise just start locking joints out and begin hanging and slumping, which then gets uncomfortable quickly.

You are SO welcome❤ Thank you for taking the time to let me know you found it helpful🤗

I'm so sorry you have had such a rough time (unfortunately as of right now that seems to be the norm for most patients). Benign Hypermobility Syndrome is technically considered to be outdated language, but it may just be that your medical doctor isn't aware in the recent change in terminology. Please do let me know if you have any questions and I'll try to incorporate them into future episodes <3

@@hypermobilityhqgood to know! She is a rheumatologist, but I was just grateful she took the time and got all of my history! The last one just kept checking bloodwork for RA because I had some abnormal results here and there. He never asked about anything but my hands! I have a lot of issues with TMJ, headaches, reflux, pelvic organ prolapses (that came back after surgery), IBS/constipation, very hyperextended knees with Chondromalacia and Patellofemoral arthritis, femoroacetabular impingement with arthritis and have had bilat labrum repairs (I’m definitely not an athlete), recurrent wrist tendinitis, atrophic scarring, etc. etc. it’s been a journey. Thank you so much! I will let you know if I have questions that come up.

Thank you so much!❤

I think feeling validated is so important. . . I used to feel self-conscious about wearing leggings often, but now I understand why I physically benefit from wearing them (and why I WANT to wear them all the time). Oooooh I'll have to try the Timberland ones (I need more time to go shopping one day!). Also, can you please explain more about the heat pad in the sports bra? I am intrigued! I will reply to the rest of your comment later (with patients today so it's hard to sit down and reply thoroughly to such a long and detailed comment in one go). But I can't wait to read the rest!!! ❤

You are SO welcome! I try my best to make my content easily accessible :) Thank you for taking the time to leave a comment too, and keep an eye out for my next episode 4 on Wednesday June 21st (it will be all about exercise!).

@@hypermobilityhq I can't wait ;)

@@CoryBranlafatt had some sound quality issues but managed to get it sorted in the end! Recording in the heatwave was BRUTAL though (not sure if you're UK based, but no air conditioning + no fans due to needing quiet for mircrophone made the temperature inside where I was recording brutal!). But I got it done and it should be a good episode :)

@@hypermobilityhq I'm in Switzerland but Summer has start here too so I get it and sympathised ;)