How Ehlers Danlos Syndrome Impacts My Life | Heart To Heart
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- Опубликовано: 7 май 2023
- In this video, Lindsay opens up about her connective tissue disorder, Ehlers Danlos Syndrome, and how it affects her life personally and as a homesteader.
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#garden #homestead #diy #raredisease #eds #ehlersdanlos #zebra #connectivetissue #injury #chicken #goat #growyourownfood #grow #growfood #sustainable #selfsufficiency #regenerativefarming #vulnerability
Thankful for your honest, heartful sharing. I'm an old RN just learning about all of this at 70, but it helps me understand why I had so, so many problems my whole life, and now. As nurses we study only a paragraph in nursing school about it, but in my 44 yrs I never saw EDS treated as a real clinical issue, or differential diagnosis to be considered for this huge population of chronic pain/disability. I was even told that I was lying about my back pain because I'm flexible, etcetc. It's only been the Physical Therapists who have educated me and legitimized all these constant issues. Wishing you the best! Thanks
A Physical Therapist was actually who first brought EDS to my attention! It's unfortunate how many medical professionals, including specialists, that I've had to educate about EDS. I hope that one day, this condition will be more easily recognized and diagnosed
I’m 54 and was just diagnosed last year. I was involved in a pretty severe car accident in my early 20’s and I think my doctors (and myself to an extent) sort of blamed my chronic pain on that, when in actuality the hEDS has been the primary factor in my widespread aches and pains (as well as the other issues like fatigue, irregular heartbeat/PVC/MVP etc that I thought were separate issues entirely).
It was just missed for so long due to other compounding issues. But once I was diagnosed EVERYTHING made so much sense! In a way, even though what I was doing was appropriate, it was just such a relief to know I wasn’t somehow malingering. Because I was truly beginning to doubt my own experience, and started to think my problems were more based in my brain than in my body. I do wish it hadn’t taken so damn long to recognize, but I’m also profoundly grateful that I now know.
I'm glad you were able to find the real reason for all of your chronic discomfort ❤️
I have eds as do all three of my kids to some degree
My daughter has the shitty vascular one, nearly bled to death twice and has had three surgeries so far. She and her wife are having baby number two. She’s trans so she’s not pregnant. Watching your video was cool and encouraging me to do my own. We need each others stories don’t we? I lived with my ex for twenty years and thought I was lazy etc etc, your chat gave clarity to why I’ve always believed I’m lazy. I’m sixty four and just learning all this. Bless, aren’t you blessed you learned so young and have such a wonderful wife. Crying now and obviously feel encouraged to get up and take the dogs for a walk. With a cane today I think cos I nearly fell yesterday and strained my neck, shoulder, arm, wrist and fingers and a knee. Thanks so much, I’ll look forward to seeing more x
I'm so glad my video helped you! I hope you and your family are able to find strength on your weak days ❤️
Hi! Fellow zebra, thanks for sharing!
You're welcome!
Dif-abled- sounds like a perfect slogan for - t shirt and hoodie
It really does! I'll have to get one made soon! :)
I know that this video is a year old, but I was really moved by your story and I deeply relate to your experiences as another person with a connective tissue disorder. I would love to homestead with chickens and randy roosters like you're doing, that sort of choice takes so much courage and dedication.
I just want to tell you that being a disabled person doesn't mean that you can't do many things. I have a connective tissue disorder, I'm blind, and I'm severely immunocompromised, and I can do a lot of things, too! I'm a ballet teacher, I dance, I write, I cook and clean and take care of animals and I'm a great wife, just like you are. To me, being disabled is acknowledging that our culture didn't have people like me in mind when different systems, structures, and institutions were developed. Schools didn't think of me, employers didn't think of me, hospitals didn't think of me, and yet, here I am, existing as myself, living as myself as best as I can. There are a lot of really detrimental stereotypes about disabled people out there that keep us from self-actualizing and being our best selves. Don't be scared of the word disabled; it's a word that reminds us that the world could be a better place, and that if we maintain our solidarity and support each other and ask for change, we can and should do that.
All my love!
I really appreciate your comment ❤️
Zebras unite!!
*punches up in the air sarcastically enthusiastic*
I appreciate your story. EDS is rough.
EDS can be so hard in so many ways beyond the physical aspects of the condition. We are definitely warriors in our own right!
Thank you for your support, for commenting, and watching!
Punches up in the air but very carefully!
I completely understand, I have eds, mcas and pots, and i deal with all the same issues, and I work construction, buy I feel that I'm reaching the point that either I need to go on disability or a job that isn't physical demanding, because my recovery periods are becoming longer and longer, I am only 43 but I have already had a back surgery, carpal tunnel surgery on both hands, lost all my teeth at the age of 27 because they became so brittle, my knees feel like they are grinding and shooting pain all day long, elbows sting alot the time, hands struggle with tasks because of the pain, pain in my neck, hips feel like pop out place and gurt so bad majority of the time, legs hurt after standing for only 3 min, and long list of other issues. What bothers me the most, is I past this onto my children. I hope the best for you and your not alone, your not crazy, I know exactly how you feel.
It's so hard knowing that the tasks we are gifted at and/or enjoy doing, are slowly taking away aspects of our lives. I adore homesteading, and all of the very physically demanding attributes of it. I also love doing home improvements and doing smallish remodeling jobs for others. Having EDS makes most aspects of life 10 times harder. I hope with your guidance and support your children are able to navigate these murky waters easier. I wish you many days of minimal pain and discomfort ❤️
Thank you for sharing your story. My children have EDS and they all 3 experience lots of pain and have some issue that you talked about. Its a relief to hear you speak of some of the things that cause you issues, because now I can understand what and maybe why my children are feeling the pain. My daughter always wakes up complaining of severe pain from sleeping wrong. They may walk the wrong way, or trip and have dislocated joints. My son is the one that is suffering the most with the pain and I haven't found a doctor who will treat his pain yet. They have to do online schooling because of how much it affects them. I feel judged and shamed at their school because they make comments or remarks hinting that I am exaggerating their pain and physical mobility issues. If only they really knew what we endure daily. It's rough. Thanks again for sharing and I'm so happy that you finally got validation. Now you can stick your middle finger up at all those people who made you feel crazy! Stay strong. Sorry to talk so much. I'm just so happy I came across your video. I'm going to share with my children so they can see they are not alone.
I'm sorry that they are all struggling so much. One of the best things I've learned to do is to try to treat what is causing the pain, instead of the pain itself. It might be difficult to find a Physical Therapist in your area that has experience with EDS or hypermobility, but it is so worth it. Keeping the stabilizing muscles in my body strong has made a world of difference in for my joints. It's a bit long to explain in a comment, but basically, in a hypermobile body, the muscles try to pick up the slack from the tendons and ligaments. The stronger the stabilizing muscles are, the more they can compensate for the weakness of the tendons and ligaments. Staying active has honestly changed my life. I still suffer from a lot of the issues your children do, but I've noticed it's easier for me to walk now without my hip randomly popping out of place, I don't have quite as many sleep injuries, and I've developed a lot better sense of balance, resulting in less injuries from tripping/falling.
It's hard having a lifelong invisible illness, but it makes it easier when there is someone supporting, advocating, and looking out for your best interests. I'm glad your children have you in their corner ❤️
Try a rheumatologist. They usually are the ones who accidentally end up diagnosing eds. It’s worth a shot. Here in Minnesota the Mayo-Clinic has only 2 docs that travel to Minneapolis and St. Paul for eds issues.
More pillows, I know people who use those big body pillows and like fully surround themselves in pillows to hold their body still while they sleep. Compression garments can help provide stability too and doesn't have some of the disadvantages that bracing can have
@@sophiehobley828 Thanks for the recommendations and I will try those!
Hi, i have hEDS as well and I'm in graduate school to go into agricultural education. It means a lot to see another zebra in agriculture. I also used to play softball (through special olympics) and while i never was a catcher it was definitely rough lol; softball amd basketball required a lot of pivoting on some not so happy knees. Best wishes!
That's awesome! My knees definitely regret a lot of my life choices, but it was quite a lot of fun lol
Although I'm nine months late on this video, you just got a new subscriber. I'm about thirty years ahead of you on my hEDS journey (spoiler alert: It doesn't become more fun), having already done the old fixer-upper and homesteading. Some of my favorite memories are working in my big garden and just being in nature. It looks as if you have a gorgeous spot there. I look forward to seeing what you get up to in the future. I hope your pain levels are low and your spirits stay high.
Thank you, and I'm glad to have you following along in our journey! :)
This is so relatable.. Thank you for sharing your story, makes me feel less alone in this ❤
You're welcome! I'm glad my story was able to help ❤️
Also, I've also joked that we who have hEDS are mermaids lol. We do well in water but not so much on land lol.
I'd have gone with a mermaid as an icon ver a zebra any day lol.
That's comical!
Sweetheart,you can be anything that you want to be. I choose to be a rainbow hippogryph, with a musical unicorn horn. Well that's my secret anyway.
Thank you so much
You're welcome!
What you said about everything you do being a careful balancing act!!! I 100 relate. Do you have lung/asthma issues too? I have exercise induced asthma along with my hEDs and everything else and I HAVE to pace myself or I will literally be dead to the world in a vegetative state until I come back to life.
Great channel ❤
I don't have any sort of lung or asthma issues to my knowledge. I am pretty sensitive to air pollution, though. I struggle pretty hard to breathe in/near cities, and they don't have to be big cities lol. I'm also quite sensitive to fragrances. As I've gotten older, I've noticed that I've become more sensitive to things.
@@storybrookefamilyfarm It's progressive. I'm 56 now and everything is much worse. But keeping a positive attitude is key. The good news is that we age better than other folks, lol. I always say that hEDS is having the flexibility of a contortionist with the joints of a 200-year-old person.
My lung issues are much worse and my irregular heartbeat seems to be the normal rhythm now.
I use a lot of natural remedies and I've been adding lemon grass oil (food grade) to body lotion and believe (according to my use) that it has decreased my pain.
I also use red light therapy. Have you tried any natural remedies?
@fractalflowers I use meditation quite frequently to keep my pain levels more tolerable. It's also key to helping me maintain my mental health and a positive attitude about life. I've found that when I do things that set my soul on fire, I seem to experience less of the misery that EDS creates
So sorry to hear how much you hurt 😢.
Thank you
My wife and son has eds. I feel for you! I do all the gardening. 😊. Be well!
Thank you!
OMG That is so funny I actually partially tore my ACL IN MY SLEEP!!!! Same as how you described waking up with severe injuries from sleeping wrong!! I didnt know this happened to other zebras too. Have you considered sleeping with any sort of splints/supports? Someone recommended compression sleeves to me as like, a type of splint that wouldn’t be too invasive for sleep. And OMG the complaining about pain when young thing- spot on. I felt so weak but actually our pain tolerance is probably way too high… I am glad you got a diagnosis but I hope you can see some quality of life improvements soon.
Thank you for your comment! When I have joints that are really acting up, I do put braces on before bed to try to immobilize them so I avoid injury. A ton of my injuries come from tossing and turning throughout the night, but it feels terribly uncomfortable to brace up just to go to sleep. I know my pain tolerance is abnormally high. I'm not sure if it's due to living in constant chronic pain, or if it's due to ASD, but either way, I am grateful that my senses don't allow me to properly access how much pain I'm in. My brain just reads my base level of pain as being 'uncomfortable'. Thankfully, I am married to someone who understands the level of discomfort I am in when I say I'm uncomfortable. She's made a world of difference with helping me cope with this disorder and with understanding that my brain processes pain differently
why did i get recommended this from a sewing video... well i watched the whole thing and it was a good rant. and your farm is cool. take care of the EDS community and broader chronic illness community. the meek shall inherit the earth.
Thank you, I'm glad you enjoyed it!
You’re very brave to speak about your illness so publicly and I thank you for your courage. My bestie has what you have. I can’t relate and I don’t understand well, but I want to be helpful to them. This video brought me to your channel and I’m enjoying all your content. I wish I could say something encouraging or insightful but I’ve never been in your position. Just know that as you go through these difficulties there are others who do share your condition and they understand. Also, it’s ok to not be ok. You have a sunny disposition that we all enjoy but don’t feel compelled to be happy on my account. You do you, and I’ll be right here.
Thank you, I greatly appreciate your support and encouragement ❤️
I can relate unfortunately. I have TNXB type. Can definitely be a daily challenge. Thanks for sharing. 😊
Thank you for your comment ❤️
I have cervical instablity and diagnosis cervical instablity i have hyper mobile eds
If you don't mind me asking, what type of doctor evaluated/diagnosed you with the cervical instability? I have a lot of hypmobility issues in my neck, but I'm not sure what type of doctor I should seek a referral for. I hope you have many low pain level days :)
@@storybrookefamilyfarmneurosurgeon
@@storybrookefamilyfarm what is hyper mobile eds complications,, is hyper mobile not affected heart and oragan
@partharoy6077 for most people, their organs are not negatively impacted by hEDS. The most common complication is a lot of joint pain and dysfunction. Some people have a lot of issues with their autonomic nervous system, which is the part of the body that regulates things we don't think about controlling, like adjusting blood pressure when you stand up, maintaining body temperature, etc.
Other types of EDS have other organ involvement as a more common features, like severe eye issues, heart issues, vein/artery issues, etc. For more information, I recommend reading articles that the Ehlers Danlos Society has put out online.
@@storybrookefamilyfarm thank you for sharing
You got it from your mom. Dad rules
Anything is possible lol
I think that it’s ok to own being disabled where do people come along thinking it’s a bad word? Some people are in serious injury and pain and have the autonomic failure part added to this which is very diabilitating won’t be farming for sure any time ever … and so when you act like it’s whoop de doo I can do things just differently well others with the disease cannot even differently so why put down being disabled and using the word disabled just to tell your story of your less severe version
I'm not sure how you judge the severity of my condition from a brief video. In several videos, I talk at length about the ways I've been and continue to struggle dealing with all of the complications, complexities, and comorbidies that come along with EDS. I try to always look on the bright side of life and not focus on my limitations, because if I don't do that, life feels very hard to cope with.
I've spent years slowly building up my strength and stamina so I can live my life in a way that brings me joy. Unfortunately, there is still a significant degree of pain and joint damage that inevitably occurs from living this way, but my life is filled with happiness, peace and joy, and for me, it makes it worth the pain.