Nrod

10 years now living with ME/Fibro/POTS & MCAS. A whole fucking decade of uncertainty, pain, heartache, pacing, being your own advocate, never giving up HOPE!

[Nrod @NrodWhyMEsucks]

Watch it, listen to what these people are saying! This a worldwide problem! https://t.co/jHOJOPd1UQ

[Nrod @NrodWhyMEsucks]

https://t.co/LxdZ7gpav6

[Nrod @NrodWhyMEsucks]

https://t.co/AxFeuQiQMm

[Adam @ABrokenBattery]

Andrew @GwynneMP at yesterday's #MEdebate talking about how half of people with #LongCovid have symptoms that mirror #MECFS and his personal experience of #LongCovid. "I was in bed for all of today, and I have only come in to give this speech."

[Nrod @NrodWhyMEsucks]

@exceedhergrasp1 It’s as if you knew people needed to hear this. I know I certainly did. Thank you.

[Nrod @NrodWhyMEsucks]

@Sabrina_Poirier Hi Sabrina, I suffered from horrible IBS, after trying different meds, I’ve now been on rabeprazole twice a day for some time now, it’s been a game changer for me, it keeps things moving.

[Nrod @NrodWhyMEsucks]

THIS… https://t.co/tLylt0bR09

[Nrod @NrodWhyMEsucks]

Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm https://t.co/IMgiQ3SNpn via @UKChange

[Nrod @NrodWhyMEsucks]

Subscribe To Health Rising’s Free Chronic Fatigue Syndrome and Fibromyalgia Information https://t.co/owqqEa7UdM

[Adam @ABrokenBattery]

Clip from yesterday's lead story on @KSTP TV.

One of the more severe outcomes of #LongCovid is #MECFS

"The first thing she said was you'd have been be better off having a heart attack at least we could do something about that."

[Nrod @NrodWhyMEsucks]

Going on a decade of having a Chronic Illness.
#ME #POTS #Fibromyalgia #MCAS

[Nrod @NrodWhyMEsucks]

Please vote for Invest in ME Research to share in $100,000 at MyGivingCircle: https://t.co/gtn6a7x0Mc

[#MEAction Network @MEActNet]

If you can't access the article, read it here: https://t.co/PJyBDc4pVw

[Nrod @NrodWhyMEsucks]

@U2 @VenetianVegas Looks amazing, huge fan! Wish I was there in person taking all this in. Excited & sad at the same time.

[Nrod @NrodWhyMEsucks]

@pamelarbishop @lincolnfingroup Im glad you u r taking a break this weekend. Its a lot of info 2 process,especially when we are so vulnerable. I was denied twice a tribunal date was set, i got a lawyer & it settled. Don’t give up, once they no you lawyered up they usually back down. The whole process is flawed

[Nrod @NrodWhyMEsucks]

Fundraiser by Gillian Fahy : Help the Toronto Cops get Kevlar vests for k9 cops https://t.co/YapCa2cHUw

[Nrod @NrodWhyMEsucks]

Back In Chains https://t.co/iAZ8GAbKeT This makes my heart hurt.Sharing Whitney’s story”that I may be a symbol for the millions of voiceless ME/CFS patients.May we b seen as human beings,r suffering b understood,may the world care & may those who are able to do something about it

[Emma, thechronicsurvivor✨🕯 @chronicsurv1vor]

#MEawarenessmonth 💙 #severeME pls RT!

People ask me what do I do with my days. Well… the photo below is what I do. Every day. 7 days a week. Every day. I do THIS 👇🏼 , & do my best to get to the toilet daily, twice a week perhaps I text with my close friends, I may have a 5 minute convo with my Mum & on the good days perhaps some casual browsing on YouTube or Twitter. But this is what I do 👇🏼👇🏼. Mainly to try stop as much disease progression as possible. I do this in order to cope with any doctor appointment or any minimal thing like joining Mum in her room sometimes. When I wake up in the morning I brush my teeth in bed, take my meds & go back to this. For couple of hours. Then do something else minor for five mins. Then back to this.

How am I surviving people may wonder? I have no bloody clue most of the time. 🤷🏻‍♀️. Hope. Self soothing. Talking to myself lovingly. Being my own best friend. Having conversations with… myself lol. Quite interesting ones. Or sheer silence. No thoughts. Just being empty. Transcending the BS of the ego. Connecting with source & my soul. Forgetting & memory loss come in handy when you’re so sick because you forget some of the trauma! I don’t like sharing these things as I’m quite a private person but for ME awareness month, it needs to be shared.

So….What do I do all day?
This 👇🏼👇🏼👇🏼

#MyalgicEncephalomyelitis #MECFS #myalgicE #pwME #millionsmissing #innerstrength #spiritualawakening