I Can't Shake This | Living With Ehlers Danlos Syndrome | Heart To Heart

[@minniegibson8722]

Thank you sweetie. You are a trooper.😊😊😊😊😊😊😊

[@storybrookefamilyfarm]

Thank you ❤️

[@claireriepe7832]

I could so much relate to every word of this. I remember using that same expression of the ticking time bomb inside of me. Trust yourself. Work smart and safely. Prioritize the things that will last and home projects that will make living there easier if you become more disabled. Be gentle with yourself, remembering that anxiety is a normal part of EDS. Most importantly, cherish every moment of the good days you have on your land and with your wife. Peace.

[@storybrookefamilyfarm]

Thank you so much for your comment ❤️

[@spikeybunny6577]

& don’t be afraid to wear braces on the parts of your body that need them. Yes wearing braces too often can lead to muscle loss, but they can help stabilize some of your problem areas, & keep them from moving past a safe range of motion… to get certain jobs done.

[@storybrookefamilyfarm]

@spikeybunny6577 I have a large collection of braces to help when different joints decide to be difficult 😅 I've found that wearing jeans without elastic in them helps give my hips and knees added support without removing too much range of motion. Thanks for the reminder to brace up before more difficult tasks :)

[@LisaMyEclecticLife]

I am adding you to my prayer list. My future son in law also has EDS so I feel a connection to you and your family. Blessings.

[@storybrookefamilyfarm]

Thank you, I greatly appreciate it! EDS can be a very challenging condition to live with.

[@kimgeorge6010]

Points of advise: 1. pace yourself 2. be kind to yourself 3. Get Medical insurance. EDS will be with you for life. Be kind to your body now and your body will be kinder to you when you are old. Hang in there.

[@storybrookefamilyfarm]

Thank you! Medical insurance will be in progress very soon

[@JoanieNagel]

I think the part of Ed’s that effects the nervous system comes into play with nervous dysregulation and I think that visual chaos majorly irritates the nervous system. In an environment where you see things that need to be done everywhere it takes its toll.

[@storybrookefamilyfarm]

That never even crossed my mind. Thank you ❤️

[@JoanieNagel]

@@storybrookefamilyfarm I take meloxicam ( down to 1/2 pill) but have had really great success with low dose naltrexone for pain… !! There is some interesting info out there about how Ed’s causes anxiety . I think it’s a viscious circle… it’s not just you!

[@storybrookefamilyfarm]

​@@JoanieNagelI'm glad you found something that helps you! It's interesting just how connected everything is with EDS

[@horseblinderson4747]

I have RA and it's terrible having old people problems in middle age or earlier, the pain is one thing the anxiety is a whole other ball of wax because lack of chill is probably my biggest flare trigger

[@storybrookefamilyfarm]

@horseblinderson4747 the anxiety and uncertainty of chronic illness can be so difficult to cope with

[@horseblinderson4747]

I'm worried more about what I'm leaving behind and did I put my legit time in. I have two kids and they're not ready for me to be gone and not punking out is the only thing that keeps me from auto-selection at times. Having to ask for help is kinda humiliating too.

[@storybrookefamilyfarm]

@@horseblinderson4747 I'm terrible at asking for help also. It's definitely been a difficult hand that you and I have both been dealt

[@Rae-yv7md]

True. I have ED but it's only showed up in the last two years. I've always been very independent and capable now I don't even recognize myself.

[@storybrookefamilyfarm]

@Rae-yv7md even though I've been diagnosed for several years, I still go through periods of grief for the life that I lost and the dreams that faded away due to this condition. It's really hard being in that position of essentially recreating a new life for yourself, fully knowing that your physical experience is vastly different than what you had ever hoped or planned for

[@stephgreen3070]

I realize this is sort of late to comment and you may already have a diagnosis, but… I think you may be developing Dupuyutren’s Contracture, also known as Viking’s Disease. It is much easier to treat when it is in its early form, as it is a thickening, contracture and fibrosis of the palmar fascia. It’s from overuse and having Ehlers Danlos, it kinda makes sense to me. Look it up and think on it. It may be better to bite the bullet and go to the doctor now rather than wait for it to worsen and not be fixable. It doesn’t go away on its own and is a progressive thickening and eventual pulling of the finger down into the palm. An ounce of prevention is worth a pound of cure, as the old saying goes.

[@storybrookefamilyfarm]

@@stephgreen3070 I will have to look into that, thank you!