Living with diagnosed fibromyalgia since age 24 (I am 36 now), it has changed every fiber of my being. My entire adult life would have turned out differently thus far. Everything I do revolves around how I feel. I can relate to everything you said. I now suspect I have EDS as well and am currently seeking a diagnosis. Sending you gentle hugs and good vibes 🌸 Thank you for your videos 💜
Very eloquent. Personally I struggle with my body. I often get frustrated for it not functioning like I want to. But at the same time it tries to keep going despite everything. I am a strong person, but I don’t think people see that, because I don’t do well. I do not think they realise how much strenght it takes to live when you do not receive support, your health is constantly dismissed and you are expected to function in the same way and be as productive as someone who is well.
Thank you for sharing this and I am sure many people will resonate with what you've said - I definitely do. I also find that since we can't visually always see pain, other people struggle to connect with it, or even believe it. I've tried, slowly, over time to work on even how I'm seeing my own pain and health issues overall - I realised that I was being too influenced by the need to be believed that I somewhere started doubting my own pain. Me believing myself helped me to advocate for myself better - be it with doctors or those around me. I really hope that you get the support you need.
@@FootprintsNoBoundariesByShruti Yes, I think we all need to be guarded for that, especially when there’s still so much negative messaging, even by doctors. Places like your channel really help.
Hi Shruti! Hope you're doing good. This is my first comment on your channel. I'd like to thank you for sharing your experiences and perspectives for people who go through the same pain and trauma which normal people MIGHT not understand as severe as it is with us who go through. Most often, people do get it that we are sick, but when they say why don't you see a good doctor, it really pisses off. I have been living with the disease for almost half of my life, when I hear this as a display of concern and care, it really makes it feel more terrible that some ppl don't even know how to express their concern in a better way. Having said all this, I'd like to share that I go through everything that you mentioned in the video. Especially when we know we are capable and have the potential for great things had it not been for this disease. Just this one thought eats me up along with the terrible physical pain that I go through. Alongside, the GUILT of not being able to be available for the family and having things done for me by them is so hard for me to take. Thankfully, i have a very understanding family and a loving husband, but the feeling of not being able to 'contribute' really makes me feel depressed.
Hi Shilpa, Thank you for dropping in a comment and sharing your experiences. I feel not enough of our emotional challenges are taken into consideration and how to work with it when doctors share our diagnosis. Also, most people who are not experiencing these conditions will ever really, truly understand how terrible they sound! Unfortunately there is such lack of compassion and empathy. I'm glad though that you have a supportive family and husband. I don't know if this helps, but we don't recognise the value we bring to the lives of those around us and by bringing awareness - these personal and societal contributions are valid contributions too and I'm not saying this to make you feel better, but I too am beginning to realise how harsh I am on myself and as you ease up and be more realistic, you find that you have more space to progress. I hope that made sense. :)
Hi Shruti, l hope you are doing okay. You are so right! I felt the same struggles for too long but having a strong mental resolve is key to getting through each day. I had terrible adenomyosis for who knows how long!! I cannot stress how important it is to love yourself whatever health issues are thrown our way. For me having a hysterectomy turned my life around. It’s a blessing to have good health after so many years of struggles & pain, of which l agree with you can really get in the way of life in general. I also believe l would have been a different person if l were healthy but accept it is what it is.
Hi Sofia, I'm doing okay - thank you :) I hope you're doing well too. I'm really glad that your decision to get the hysterectomy done changed things for you - for many it can be a tough step to take because of societal and family pressures but like you said, having that mental resolve and loving yourself is so important - You have to do what's right to help you lead a life that you deserve - a life that helps you work towards your potential. And considering a hysterectomy creates that possibility for you then it's sensible to take it. I was wondering, how was your recovery post hysterectomy? And how long did it take? Thank you for taking the time out to leave a comment - thank you for sharing. :)
@@FootprintsNoBoundariesByShruti Hey Shruti, hysterectomy is the ultimate answer to adenomyosis & l say this solely from the standpoint of how l feel 9mths later. When the procedure was offered to me, l jumped straight into it, with no fear, and all thanks go to my fabulous gynaecologist who talked me though the entire rhyme & reason to have it done. I knew my life would change completely! In fact l feel 14 again (pre menstruation). No pain, no hair falling out, no itching & scratching, weight gain or bedridden for too many years of my timeline! And the fact that l thought it was “normal” to feel that bad! Post hysterectomy l feel awesome. The operation itself was simple, even though it was a full hysterectomy. It was not what most think it is. In fact recovery from the procedure was extremely fast. I was advised to not lift heavy weights, have lots of bed rest & eat very healthily to aid with the healing process. I walked the next day in gentle steps & kept vigilant each day to get some movement throughout my six week recovery process. In fact l was back to doing my usual routines immediately after those six weeks, with so much joy & spring in my step that l cannot describe! It felt like 40 years of cobwebs were wiped away!! I also believe all those years suffering with this condition procured the psychosomatic uterine cyst which was removed & luckily was not cancerous. My hormones are doing really well also & are balanced after all these years. Having gone into medically induced menopause was a concern for me but so far l’m taking magnesium (for body aches after menopause) Vit D, C, iron & zinc & eating well. My bowel movements have never been better, no more constipation/diahorea episodes either….just normal….. yay! I have transitioned so well into the next phase of my life. I’m no longer feeling drained & tired …. excited for my next phase of life, to live life to the fullest with no more pain 🌈 …… So what l want to project to all who are suffering unnecessarily from this, please make that step and do something about it. Don’t allow it to consume your lives any further, like l did. Make the decision and go for it. Trust me, you won’t regret it. Cheers Sofi 💜
Hi Sofia! Happy for you that your life transformed and you're enjoying it to the fullest. All the very best for the second phase of life. I'm 40 and have been suffering from the age of 22 with stage 4 endometriosis. Since the last 2 years, every cycle is a hell. I'm sure ppl in the community would agree when I use the word 'Hell'. A lot of trauma. Wanted to recheck with you if it's OK to get hysterectomy done? A few of the doctors and well wishers say that getting it done would completely change the game of harmones in the body. I feel STUCK. Would be happy to hear back from you to learn more about what all information you could get about the surgery before you got it done. Thank you!
I'd love the answer to that too! I guess I fear the whole change in hormones and the long recovery it wold require. The endo excision surgery recovery was so exhausting that a hysterectomy tires me just thinking of it!
Thanks for the excellent video! My thoughts and feelings about my chronic illness (Ehlers Danlos and related issues, plus multiple cancers) are pretty much identical to what you so eloquently stated. I can't really elaborate, since you described things perfectly. One additional aspect of chronic illness is the loneliness and likelihood that I'll be alone for the rest of my life. Women seem to not want to have a relationship with a chronically ill male. Although huge strides have been made toward gender equality, society for the most part still expects the male to be the breadwinner in a family or relationship. Over the years, I've met a couple of women who have been able to look past that, but their mothers have always talked them out of having a relationship with me, citing my chronic health issues. The isolation and loneliness is often more unbearable than the symptoms of my chronic illness. It's sad when the only physical human contact I have is when I get a blood draw or get my blood pressure checked.
Thank you sharing an issue that is faced by many men yet it is so easily overlooked. I don't think we as a society have really struck the right balance and understood the 'equal' in equality yet. The mental perception has to change on an individual level for it to impact as a whole. Also, I feel it's tough to be with someone with a chronic illness regardless of gender, but then, everyone has some issues and challenges - health is a scary one though and it comes from a space of unknown for the partner. And the right person in your life will be able to look beyond this and take a stand for you in front others - but yes, for a majority, to have such a conviction is tough - it takes a different level of strength of character, love and respect. I really hope that happens for you. Once again, thank you for sharing - thank you for taking the time out to drop in your experiences.
![Are Ehlers-Danlos Syndrome & Fibromyalgia Connected? [CC]](http://i.ytimg.com/vi/FaCxMUTWgKc/mqdefault.jpg)
![Are Ehlers-Danlos Syndrome & Fibromyalgia Connected? [CC]](/img/tr.png)
![My Endometriosis Story | How I Was Diagnosed with Endometriosis [CC]](http://i.ytimg.com/vi/Cfs_XoWhMTA/mqdefault.jpg)
![Lp. Сердце Вселенной #60 РОЖДЕНИЕ ЛОЛОЛОШКИ [Финал] • Майнкрафт](http://i.ytimg.com/vi/YoR0pAV9FVQ/mqdefault.jpg)
Living with diagnosed fibromyalgia since age 24 (I am 36 now), it has changed every fiber of my being. My entire adult life would have turned out differently thus far. Everything I do revolves around how I feel. I can relate to everything you said. I now suspect I have EDS as well and am currently seeking a diagnosis. Sending you gentle hugs and good vibes 🌸 Thank you for your videos 💜
Very eloquent.
Personally I struggle with my body. I often get frustrated for it not functioning like I want to. But at the same time it tries to keep going despite everything. I am a strong person, but I don’t think people see that, because I don’t do well. I do not think they realise how much strenght it takes to live when you do not receive support, your health is constantly dismissed and you are expected to function in the same way and be as productive as someone who is well.
Thank you for sharing this and I am sure many people will resonate with what you've said - I definitely do. I also find that since we can't visually always see pain, other people struggle to connect with it, or even believe it. I've tried, slowly, over time to work on even how I'm seeing my own pain and health issues overall - I realised that I was being too influenced by the need to be believed that I somewhere started doubting my own pain.
Me believing myself helped me to advocate for myself better - be it with doctors or those around me.
I really hope that you get the support you need.
@@FootprintsNoBoundariesByShruti Yes, I think we all need to be guarded for that, especially when there’s still so much negative messaging, even by doctors. Places like your channel really help.
Hi Shruti! Hope you're doing good. This is my first comment on your channel.
I'd like to thank you for sharing your experiences and perspectives for people who go through the same pain and trauma which normal people MIGHT not understand as severe as it is with us who go through. Most often, people do get it that we are sick, but when they say why don't you see a good doctor, it really pisses off. I have been living with the disease for almost half of my life, when I hear this as a display of concern and care, it really makes it feel more terrible that some ppl don't even know how to express their concern in a better way. Having said all this, I'd like to share that I go through everything that you mentioned in the video. Especially when we know we are capable and have the potential for great things had it not been for this disease. Just this one thought eats me up along with the terrible physical pain that I go through. Alongside, the GUILT of not being able to be available for the family and having things done for me by them is so hard for me to take. Thankfully, i have a very understanding family and a loving husband, but the feeling of not being able to 'contribute' really makes me feel depressed.
Hi Shilpa,
Thank you for dropping in a comment and sharing your experiences.
I feel not enough of our emotional challenges are taken into consideration and how to work with it when doctors share our diagnosis.
Also, most people who are not experiencing these conditions will ever really, truly understand how terrible they sound! Unfortunately there is such lack of compassion and empathy.
I'm glad though that you have a supportive family and husband.
I don't know if this helps, but we don't recognise the value we bring to the lives of those around us and by bringing awareness - these personal and societal contributions are valid contributions too and I'm not saying this to make you feel better, but I too am beginning to realise how harsh I am on myself and as you ease up and be more realistic, you find that you have more space to progress.
I hope that made sense. :)
Hi Shruti, l hope you are doing okay. You are so right! I felt the same struggles for too long but having a strong mental resolve is key to getting through each day. I had terrible adenomyosis for who knows how long!! I cannot stress how important it is to love yourself whatever health issues are thrown our way. For me having a hysterectomy turned my life around. It’s a blessing to have good health after so many years of struggles & pain, of which l agree with you can really get in the way of life in general. I also believe l would have been a different person if l were healthy but accept it is what it is.
Hi Sofia, I'm doing okay - thank you :) I hope you're doing well too.
I'm really glad that your decision to get the hysterectomy done changed things for you - for many it can be a tough step to take because of societal and family pressures but like you said, having that mental resolve and loving yourself is so important - You have to do what's right to help you lead a life that you deserve - a life that helps you work towards your potential. And considering a hysterectomy creates that possibility for you then it's sensible to take it.
I was wondering, how was your recovery post hysterectomy? And how long did it take?
Thank you for taking the time out to leave a comment - thank you for sharing. :)
@@FootprintsNoBoundariesByShruti
Hey Shruti, hysterectomy is the ultimate answer to adenomyosis & l say this solely from the standpoint of how l feel 9mths later. When the procedure was offered to me, l jumped straight into it, with no fear, and all thanks go to my fabulous gynaecologist who talked me though the entire rhyme & reason to have it done. I knew my life would change completely! In fact l feel 14 again (pre menstruation). No pain, no hair falling out, no itching & scratching, weight gain or bedridden for too many years of my timeline! And the fact that l thought it was “normal” to feel that bad!
Post hysterectomy l feel awesome.
The operation itself was simple, even though it was a full hysterectomy. It was not what most think it is. In fact recovery from the procedure was extremely fast. I was advised to not lift heavy weights, have lots of bed rest & eat very healthily to aid with the healing process. I walked the next day in gentle steps & kept vigilant each day to get some movement throughout my six week recovery process. In fact l was back to doing my usual routines immediately after those six weeks, with so much joy & spring in my step that l cannot describe! It felt like 40 years of cobwebs were wiped away!!
I also believe all those years suffering with this condition procured the psychosomatic uterine cyst which was removed & luckily was not cancerous. My hormones are doing really well also & are balanced after all these years. Having gone into medically induced menopause was a concern for me but so far l’m taking magnesium (for body aches after menopause) Vit D, C, iron & zinc & eating well. My bowel movements have never been better, no more constipation/diahorea episodes either….just normal….. yay!
I have transitioned so well into the next phase of my life. I’m no longer feeling drained & tired …. excited for my next phase of life, to live life to the fullest with no more pain 🌈
…… So what l want to project to all who are suffering unnecessarily from this, please make that step and do something about it. Don’t allow it to consume your lives any further, like l did. Make the decision and go for it. Trust me, you won’t regret it.
Cheers Sofi 💜
Hi Sofia! Happy for you that your life transformed and you're enjoying it to the fullest. All the very best for the second phase of life. I'm 40 and have been suffering from the age of 22 with stage 4 endometriosis. Since the last 2 years, every cycle is a hell. I'm sure ppl in the community would agree when I use the word 'Hell'. A lot of trauma. Wanted to recheck with you if it's OK to get hysterectomy done? A few of the doctors and well wishers say that getting it done would completely change the game of harmones in the body. I feel STUCK. Would be happy to hear back from you to learn more about what all information you could get about the surgery before you got it done. Thank you!
I'd love the answer to that too! I guess I fear the whole change in hormones and the long recovery it wold require. The endo excision surgery recovery was so exhausting that a hysterectomy tires me just thinking of it!
Thanks for the excellent video! My thoughts and feelings about my chronic illness (Ehlers Danlos and related issues, plus multiple cancers) are pretty much identical to what you so eloquently stated. I can't really elaborate, since you described things perfectly.
One additional aspect of chronic illness is the loneliness and likelihood that I'll be alone for the rest of my life. Women seem to not want to have a relationship with a chronically ill male. Although huge strides have been made toward gender equality, society for the most part still expects the male to be the breadwinner in a family or relationship. Over the years, I've met a couple of women who have been able to look past that, but their mothers have always talked them out of having a relationship with me, citing my chronic health issues. The isolation and loneliness is often more unbearable than the symptoms of my chronic illness. It's sad when the only physical human contact I have is when I get a blood draw or get my blood pressure checked.
Thank you sharing an issue that is faced by many men yet it is so easily overlooked. I don't think we as a society have really struck the right balance and understood the 'equal' in equality yet. The mental perception has to change on an individual level for it to impact as a whole.
Also, I feel it's tough to be with someone with a chronic illness regardless of gender, but then, everyone has some issues and challenges - health is a scary one though and it comes from a space of unknown for the partner.
And the right person in your life will be able to look beyond this and take a stand for you in front others - but yes, for a majority, to have such a conviction is tough - it takes a different level of strength of character, love and respect. I really hope that happens for you.
Once again, thank you for sharing - thank you for taking the time out to drop in your experiences.
Thanks so much for sharing your health struggles with us. I do pray that you will remain strong and continue going.
Thank you Josie, that's very kind of you :)
@@FootprintsNoBoundariesByShruti Happy Sabbath, Shruti! I do pray that you will have a blessed weekend.
This is an excellent video and I agree so much
Thank you so much :) and thank you for dropping in a comment - it's very encouraging.
This was interesting