I am on the hypermobility spectrum but not diagnosed with hEDS yet. I also have heart failure, cardiomyopathy, heart rhythmn issues. I grew up on a farm and have always been very independent. My dad taught me how to do a lot of diy, home repair, etc... I used to just do everything by myself. Now, I am limited. Some days are great, many are not. Just like you when I do to much, like heavy cleaning, walking aot, or loading and unloading my art stuff for selling at farmers market, I end up in a lot of pain, fatigue, and days of recovery. I have learned my threshholds so I dont push past those so I still do things. I have adapted. I still do what I love but differently or at a simpler level. Very jealous of your homesteading and home projects. I live in an apartment. I have hit menopause and feel my hypermobility issues have changed, worsened, especially pain and fatigue. Thanks for sharing your life. You do inspire those who live with severe health issues.
Thank you for sharing a piece of your story with me. I tell others that I'm diffabled, not disabled. When they look at me funny, I then explain that I'm able to do a lot of things, but I'm only able to do them in my own, different way. My different way may be that it takes me a week to do what would take others just a day, it may also be that I can only do it while heavily self medicating, or with the help of another person. The world may try to label those with my condition to be disabled, but in my perspective, we are simply diffabled
Thank you for sharing. ❤ I have Achilles tendonitis and plantar fasciitis from some stiff tendons and muscles… The pain is awful. Sometimes I cry just thinking about it because it’s exhausting. Pain with every step. Hugs hugs hugs to you! My journey, causes and outlook are different… I do feel the labor associated with farm life is a blessing to me. I’m glad you’re finding joy in it - it’s good to recognize your limitations and how the work will affect you. ----- This part is MY experience and I’m sharing it only if you want to try it for pain relief. No judgement from me with how you cope and survive though. Me and pain meds don’t get along well… I shattered my T11 vertebrae two years ago, so I figured I should let them give me at least lower doses of pain meds… but I felt crappier. Not only physically, but spiritually. Finally on day 5, I decided to stop all pain meds and replace it with prayer. The nurses and therapists thought I was crazy, tried pressuring me to take more meds. But it changed everything. I went from struggling to sleep to begging God to hold me to sleep - and He did. I was given strength and comfort to cope and endure, rather than having all the pain taken away. God got me from one prayer to the next. He allows us to endure difficulties that we may grow, become purified and be the people we need to be. I haven’t had a Tylenol or ibuprofen since. It’s a miracle… it’s worth a try if you want to try. (I’m an over-sharer too!) praying for you! I hope in one way or another you experience daily miracles. God sees you, knows you and loves you. 🧡🍁🧡
Thank you so much for this comment. I frequently do pray and ask for comfort and the strength I need to make it through the tasks that have been laid out for me to complete. I've found that asking for help, usually does help significantly, even if it's just asking for help to sleep a little easier
Thank you so much for sharing this
You're welcome!
I am on the hypermobility spectrum but not diagnosed with hEDS yet. I also have heart failure, cardiomyopathy, heart rhythmn issues. I grew up on a farm and have always been very independent. My dad taught me how to do a lot of diy, home repair, etc... I used to just do everything by myself. Now, I am limited. Some days are great, many are not. Just like you when I do to much, like heavy cleaning, walking aot, or loading and unloading my art stuff for selling at farmers market, I end up in a lot of pain, fatigue, and days of recovery.
I have learned my threshholds so I dont push past those so I still do things. I have adapted.
I still do what I love but differently or at a simpler level.
Very jealous of your homesteading and home projects. I live in an apartment.
I have hit menopause and feel my hypermobility issues have changed, worsened, especially pain and fatigue.
Thanks for sharing your life. You do inspire those who live with severe health issues.
Thank you for sharing a piece of your story with me. I tell others that I'm diffabled, not disabled. When they look at me funny, I then explain that I'm able to do a lot of things, but I'm only able to do them in my own, different way. My different way may be that it takes me a week to do what would take others just a day, it may also be that I can only do it while heavily self medicating, or with the help of another person. The world may try to label those with my condition to be disabled, but in my perspective, we are simply diffabled
and don't forget to be kind to yourself, too!
Sage advice, thank you!
Thank you for sharing. ❤
I have Achilles tendonitis and plantar fasciitis from some stiff tendons and muscles… The pain is awful. Sometimes I cry just thinking about it because it’s exhausting. Pain with every step.
Hugs hugs hugs to you! My journey, causes and outlook are different… I do feel the labor associated with farm life is a blessing to me. I’m glad you’re finding joy in it - it’s good to recognize your limitations and how the work will affect you.
-----
This part is MY experience and I’m sharing it only if you want to try it for pain relief. No judgement from me with how you cope and survive though.
Me and pain meds don’t get along well… I shattered my T11 vertebrae two years ago, so I figured I should let them give me at least lower doses of pain meds… but I felt crappier. Not only physically, but spiritually.
Finally on day 5, I decided to stop all pain meds and replace it with prayer. The nurses and therapists thought I was crazy, tried pressuring me to take more meds.
But it changed everything. I went from struggling to sleep to begging God to hold me to sleep - and He did. I was given strength and comfort to cope and endure, rather than having all the pain taken away. God got me from one prayer to the next. He allows us to endure difficulties that we may grow, become purified and be the people we need to be.
I haven’t had a Tylenol or ibuprofen since. It’s a miracle… it’s worth a try if you want to try.
(I’m an over-sharer too!) praying for you! I hope in one way or another you experience daily miracles. God sees you, knows you and loves you.
🧡🍁🧡
Thank you so much for this comment. I frequently do pray and ask for comfort and the strength I need to make it through the tasks that have been laid out for me to complete. I've found that asking for help, usually does help significantly, even if it's just asking for help to sleep a little easier
@@storybrookefamilyfarm that’s wonderful. ❤️
I found that I often grew tired of asking for help… He never grows tired of giving it.
@8dreamersfarm I have many years left of asking for help, so hopefully, that will ring true for me as well