Learning to Live with Post-Covid ME/CFS | Covid-19 Survivor Diaries Episode 13

HELP US SHARE MORE STORIES
/ survivor_diaries
Hi! We're Morgana and Jaco. When Covid-19 started spreading where we lived in 2020, we began documenting and sharing stories of Covid-19 survivors to spread awareness about the disease. But, we decided that wasn’t enough. We wanted to show how Covid-19 has impacted people across America. So, we packed up our New York apartment and moved into a 19’ trailer. 414 days, over 40,000 miles, 4 flights, and over 70 campsites later, we have now interviewed over 190 survivors in 50 states. In our documentary film series, you’ll get to know some of them and their stories. And you’ll hear from experts who answer our questions about this virus as we drive through the heart of the outbreak across America.
SUBSCRIBE TO THE E-NEWSLETTER TO BE NOTIFIED WHEN NEW EPISODES ARE RELEASED
thesurvivordiaries.com/e-news...
FOLLOW THE JOURNEY ON SOCIAL MEDIA
thesurvivordiaries.com
/ survivordiariesofficial
/ survivordiariesofficial
/ covidsurvivors
www.clubhouse.com/@morganawin...
00:00 - Episode 12 recap
01:07 - Season 1 intro
02:15 - Start of episode 13
06:05 - The backstory
14:17 - Death with Dignity
17:30 - Moving to Oregon
20:40 - Cheryl and Joe end reflections
26:04 - Jaco and Morgana end reflections
MB017M0LOC3WIGT

[@CherylRuzzo]

Thank you for giving Joe and I the opportunity to share our story in this way. This is absolutely us. We appreciate everything that you have done for us and for so many other survivors.

[@SurvivorDiariesOfficial]

Thank you for trusting us to share your story!!

[@francescarrillo7080]

I’m so grateful to have seen your story. Thank you for sharing.

[@sannajonkhart8758]

Dear Joe and Cheryl, my precious online friends...This is so beautiful and so profound. By sharing this, you will touch so many lives and inspire people to live their best lives to their ability. Love you lots. X Sanna

[@CherylRuzzo]

@@sannajonkhart8758 thank you my friend. We are so honored you watched it. 🫂

[@CherylRuzzo]

@@francescarrillo7080 Thank you for watching. I am so glad that our story has given you hope. It is a brutal and lonely journey; knowing that we are not alone is so needed.

[@kimmartindale9205]

I'm dealing with ME dysautonomia x 30 years now. I am glad you have each other!!! The majority of people lose their partners and family

[@francescarrillo7080]

I live in New Braunfels, TX. I had the omicron variant 12/26/2021. I’m still trying to recover. Thank you for sharing this story. It gives me some hope. There’s some Shame about having this condition. I have found very little help. We moved here 7 years ago and had so many plans for our 7 acres, but just like the woman you interviewed, it has felt more like a prison. Thank you again. I needed to see this.

[@SurvivorDiariesOfficial]

Frances thank you so much for watching! I'm so thankful this gives you hope. That's one of our hopes for these films. You are not alone! Many people are struggling with Long Covid and/or ME/CFS. Hopefully, more awareness will bring more attention to this condition and with it more research and healthcare support. If you haven't seen it already, you can watch the first part of Cheryl's story in episode 12: kzbin.info/www/bejne/pJW0lJKJdtCea5Y You can get through this!!!

[@tamb7587]

I hear there is a good Long Covid clinic in San Antonio! I am getting info on it soon from a patient of theirs that I know. Supposedly this clinic in San Antonio is good

[@chrisduncan3943]

There have now been a couple papers published that claim that most people with long covid recover within a year. You wouldn't know that by visiting the forums. It's important to maintain hope because most people will recover. Part of the hopelessness is listening to fearful people online and part of is probably just a symptom of long covid itself.

[@toneyfree7179]

That was my case, the more I searched online, the more I got anexity,fear and started to lose hope Day at a time, listen to your body, take vitamins, be around loved ones I hope all people who suffer from this get well 🙏

[@huh_really]

It's frustrating reading the "recovery" stats😢

[@mpbyns2]

When you do these interviews and stories, can you clarify if these individuals were vaccinated and boosted? Thanks.

[@SurvivorDiariesOfficial]

Great question! Since that has become highly polarizing we've left it to the discretion of the people we've interviewed to decide if they want to share that information or not. Just because not everyone on the internet is nice about it :) But, I can say we started this project in 2020 and many of the initial interviews were actually done before the vaccines came out.

[@technicolourmyles]

@@SurvivorDiariesOfficialvery good response, kudos!

[@MikeBush-zy6gh]

I sympathize with this young lady. I’m not in a wheel chair yet but have had my share of major problem since the vax in 2021. There has not been one Dr that takes me seriously so I just get sicker. All of these Drs that refuse to help people should have their licenses revoked. I realize that these Drs do not know what to do but do they not have the drive as a Dr to just take some time to do some research And at least try to help? I have been gaslighted and dismissed so many times that I don’t want to see another Dr! The medical field has failed the American people!!!!!!’n

[@brobinson8614]

Interesting as a lot of people who either have or a family member has Ehlers-Danlos Syndrome. Which is common in people with ME/CFS. There must be a genetic link here

[@nektariosandmagdalena4985]

I have long covid found out after i have EDS COVID triggered horrible symptoms

[@4299chez1]

Can’t wait to see where you are at in another year Cheryl Ruzzo xx

[@SurvivorDiariesOfficial]

Agreed!!

[@CherylRuzzo]

We are so excited for the future. xo

[@Star5dg]

How is she doing now? I have these conditions :(

[@gwilkins4617]

What is so special about Oregon?

[@CherylRuzzo]

I don’t believe there is anything really special about Oregon overall. It’s just what my body seems to like. It happens to be that we found one small place in the country that my overall reactivity to the environment is down and that keeps my symptoms down. I do best at sea level with moderate temperatures, winds from the south or west, and low pollution levels. We happened to find one city that I do really well in so we decided to move. If we drive north I become reactive. If we drive east my symptoms become uncontrollable again. Whatever it is here, my body really likes it.

[@allahuakbar3810]

@@CherylRuzzo hi I can't walk in street. I can only 300step a day 😭After covid fatigue so worse. Can you help me?

[@nesekitty9703]

@@CherylRuzzo maybe no chemtrails there?

[@bluehammergaming8825]

Sorry buy why did you guys move? It sounds like the move helped alot?

[@SurvivorDiariesOfficial]

Yes, the move seems to have helped them a lot! Thanks so much for watching!!

[@bluehammergaming8825]

@Survivor Diaries great! Is what way did it help? Was it the heat that was causing them issues?

[@CherylRuzzo]

Hi There. We moved strictly for my health. We knew I was reacting to something in the northeast New England environment because I would see small improvements when we traveled to appointments outside of our area. When we were given no more options because of my reactivity and inability to tolerate foods or liquids we decided there was no other option but to try finding a place that my reactivity would go down enough to improve my quality of life at a minimum, and we hoped it could improve enough to add medical treatments. Moving has helped me significantly. We are not exactly sure what it was that was causing me to be so reactive to everything but my overall reactivity has come down. My breathing has improved, my airway and constant feeling of ‘something stuck in my throat’ has improved. While I still have a restricted diet, I have much more quality of life with my food options. A couple weeks ago we just added a compounded medication and I am tolerating that when I couldn’t tolerate it when we lived back east. I have gone from being in bed 23 hours a day to being able to use my power chair to go down to road to meet my 10 year old daughter after school. We are really hopeful for the future.

[@brobinson8614]

@@CherylRuzzo Probably mould. Many people with ME/CFS have an intolerance to mould

[@legend8877]

Has anyone considered mold exposure #Mycotoxins

[@SurvivorDiariesOfficial]

Good question! Have you found any research linking long Covid and mold exposure?

[@nesekitty9703]

OH YES

[@mihakavcic7237]

​@@SurvivorDiariesOfficialIt could be narcotics and high cortisol [stress], so many things can break the system...

[@MP-uo6qd]

you sound like Erik mold warrior LOL. There's no evidence that ME/CFS is caused by moldy buildings. If it were, then just avoiding them would cure you LOL@@nesekitty9703

[@_hashtag]

Have you considered you are 🌈?