The Impact POTs Has On My Life | Chronic Illness | EDS

In this video, Lindsay shares how one of her chronic illnesses has been impacting her quality of life.
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#chronicillness #pots #eds #ehlersdanlossyndrome #disautonomia #disability #fatigue #illness #reality #realife #authentic #realtalk #update #health #wellness

[@karenoatley8673]

Can't believe I found your channel. I have a friend who was finally diagnosed with EDS through genetic testing. She has been through so much and continues to go through more and more. I try to support her as best as I can.It is an insidious condition. I will be telling her about your channel!

[@storybrookefamilyfarm]

I'm glad your friend has you for support! Living with these conditions can be a very isolating and lonely road

[@carlak8419]

Golly, I knew nothing of your illness' but got the feeling the eclipse was a big deal!
You REBEL you!
Health issues also affect those around you. You must have one heck of a bundle of love and understanding surrounding you! 💗
Keep on keeping on!!!

[@storybrookefamilyfarm]

The eclipse seemed to exasperated my energy levels pretty significantly. What a week to be in a flare up lol. My wife is hugely supportive of my limitations, set backs and bad days. I wouldn't be half of who I am today if it wasn't for her support.

[@Viper-jk2pf]

Sorry your dealing with Potts Syndrome. I had a friend that suffered from it and had some really rough days..Just be gentle with yourself when needed and help your body get what it needs...❤

[@storybrookefamilyfarm]

I'm doing my best to remind myself that sometimes inaction is just as important as action. Hopefully everything will get back into balance for me soon

[@k18ak]

PoTs is debilitating, if im sitting im around 70-80, when i stand it goes up to 140+ , having a nice flare atm with nausea+headaches... You know your body is truly being a cu*t when you are simply making your bed and you feel like you are dying xD The odd thing is its got worse as I've got older, when I was a teen it was mostly stand up, intense dizziness sometimes my eyes would black out (never passed out), but now I'm 37 the symptoms are so much worse and daily. \o/
My mum had/ has Pots- she doesn't mention it now, so I assume she is not symptomatic. Two of my children have also got it. :/
*hugs* to you for making people aware of this, its so much worse than I think a lot of people give it credit.

[@storybrookefamilyfarm]

In my own experience, if I stay more inactive, I become more incapacitated with my EDS symptoms and POTs symptoms due to my body becoming deconditioned for life on earth. This deconditioning can start happening to me after just a few days of lounging and taking it easy. It feels like I'm always walking on a very slippery slope of pushing too hard and not pushing hard enough. If that balance gets disrupted for me, then everything starts to crumble and it becomes quite difficult to recover and get myself back in the groove. I hope my comment helps

[@Starstuddedgarden]

Sorry you are dealing with this. My 13 year old granddaughter has POTS.

[@storybrookefamilyfarm]

I hope she's able to figure out what works best for her unique body to make this condition more manageable ❤️

[@Starstuddedgarden]

@@storybrookefamilyfarm Me, too ❤

[@rethinkeverything2982]

So in the past decade I’ve had a neck fusion that failed above and below c-5,c-6
Docs won’t touch me because of eds type 3
And now my mid spine has needed surgery for years!! In saying all of that I relate a lot of symptoms to pots when it comes to disautonomia but others are similar in that when one of my discs slips out I think the spinal fluid actually stops that natural flow and causes the same type of symptoms so it’s scary to think is it bad or really bad.

[@storybrookefamilyfarm]

I have a ton of issues with my neck also. I'm actually in the process of trying to get evaluated for CCI, which also causes a lot of weird symptoms too. My only joint surgery epically failed, so it's concerning to think about potentially needing any more operations due to the likelihood of failure. Hopefully, each of us will be able to find the help we need :)

[@user-fc9zf7wj1t]

If you have a lot of pain I have had great success with low dose naltrexone.

[@storybrookefamilyfarm]

I'll have to look into that. Thank you!

[@user-fc9zf7wj1t]

@@storybrookefamilyfarmfeel free to reach out .. I have Ed’s and am 49, my poor daughter became very unwell at 9 and has all the comorbities.