Saud

severe ME | Life on pause from Covid induced * insert laundry list *

[Saud @Saudsthought]

@Jendelgato I’ve actually tested positive for Bartonella and Babesia, so it’s something I’ve wondered about. My trigger was definitely Covid though. I haven’t pursued treatment for the TBDs because I don’t have access to anyone who can properly evaluate/treat them, but I’m not ruling it out.

[Saud @Saudsthought]

I want to know what it feels like to be one of those people who takes an antihistamine, starts LDN, tries CoQ10 or nicotine patches and suddenly goes “WAIT… I FEEL BETTER???”

Couldn’t be me. I got the stubborn ME that looks at every intervention and goes: “That’s cute. Anyway…

[Saud @Saudsthought]

@Matt56404055206 I have gastroparesis, so unfortunately I can’t really try Wegovy or the other GLP-1s They delay gastric emptying, which would probably be a pretty bad idea for me

[Saud @Saudsthought]

@zebramaeuschen That’s so interesting because amitriptyline was one of the very first medications I tried, if not the first, and it did absolutely nothing for me 😭 It’s wild how differently the same medication can affect people. Glad you found something that made such a huge difference though🙏🏼

[Saud @Saudsthought]

And I can’t really explain this to family/friends because I know how it sounds: “You can be on your phone for 30 minutes but can’t talk to me for 10?” It sounds psychological or like I just don’t want to see people. Ugh.

[Saud @Saudsthought]

One of the strangest things about ME:
I can listen to a 30-minute podcast or exchange voice notes without much issue, yet 10 minutes of face-to-face conversation can leave me feeling like my brain is on fire, intensely symptomatic, and like I’m about to black out.

Why?

[Saud @Saudsthought]

MECFS feels like being trapped inside a maze of cages, where every door you reach leads to another cage.

[Saud @Saudsthought]

@AetherFox_ My sister has scleroderma and my brothers autistic

[Saud @Saudsthought]

One thing I’ve never been able to make sense of is my own health journey.

Up until I was 23, I had no major health issues, at least none that I was aware of. Then it felt like everything changed almost overnight. (1/4)

[Saud @Saudsthought]

To this day, I’m still left wondering.

Was there always something underlying that made me vulnerable? Were those early symptoms connected to what came later? Or was Covid the event that tipped everything over?

I still don’t know the answer. (4/4)

[Saud @Saudsthought]

I eventually had jaw surgery. 3 months later I got Covid , and that spiraled into ME/CFS, dysautonomia, and gastroparesis.
It honestly felt like I went from perfect health to collecting diagnoses like Pokémon. (3/4)

[Saud @Saudsthought]

@jason_isaia That’s a really good point. I also wonder how many people with mild ME are undiagnosed and just unknowingly pushing through until they can’t anymore

[Saud @Saudsthought]

Genuine question.

How are some people with mild ME able to do 20 minutes on a treadmill or cross trainer?

I went from mild to severe and bedridden after attempting exercise. I genuinely don’t understand what explains the difference?

[Saud @Saudsthought]

@robynasaldino @liamsLCjourney That’s really interesting. It sounds like you had a much larger energy envelope back then, even if it ultimately came at a cost.

[Saud @Saudsthought]

@liamsLCjourney That’s interesting. It really shows how unpredictable this illness can be and how one thing can completely change the trajectory

[Saud @Saudsthought]

@cfs_research I’m not saying nobody recovers. I’m saying I’m skeptical of people who attribute dramatic recoveries solely to brain retraining while selling that same method to vulnerable patients. Good for you if you’ve recovered. My criticism isn’t of recovered patients.

[Saud @Saudsthought]

Nothing makes my blood boil like that Raven eagle girl on YouTube that promotes / interviews mecfs / long covid ‘ recovery ‘ stories through brain retraining programs she reminds me of belle Gibson that wellness blogger that faked cancer then healed herself through diet

[Saud @Saudsthought]

@Fizzbw Anecdotes aren’t the issue. Turning anecdotes into marketing for expensive brain retraining programs is. We don’t do this for cancer, MS, or lupus why is mecfs treated differently?

[Saud @Saudsthought]

@cfs_research I personally do not believe them! If you’re selling a brain retraining program that took you from bed bound to running in a span of 4weeks from visualisation and breath work forgive me for having doubts! Also how come every brain training recovery story they’re selling a course?