Ami

My story of a virus making me chronically ill - ME, MCAS, Dysautonomia and more… ❤️‍🩹✨🌸

[Ami @amislifexx]

@rhirhiarhii 🫂🫂

[Nele @NeleHelena]

I usually don't think too much about it but sometimes it suddenly hits me. This is it. No other chances. This is my life and I'm severely ill and it won't get better. Today is such a day and it hits hard. I'm usually a master at ignoring this. I guess we all are? It's too big.

[Ami @amislifexx]

@froglet80 I get a lot of pain there :((

[Sarah O'Connell @SarahOC_MECFS]

Are there other diseases where at any time you could rapidly become far more ill,100% bedbound,unable to eat & Dr's will do nothing to save you
No one knows how your ME will progress,could improve,could become so ill you're the living dead
As a #pwME you live evry dy knowing that

[☆ mairéad ★ @velvetsunday]

I’m winning Halloween this year btw

[Ami @amislifexx]

@sadfoxqueen I’m so sorry 😔 we deserve so much better, I truly have no words for how poorly we’re treated. Sending you so much love 💗

[Ami @amislifexx]

People keep telling me to fix my gut but I’ve got MCAS, react to everything and have no money. So wtf am I supposed to do? By the way it’s going, probably d!e of these illnesses in my early 20’s with barely any life. #chronicillness #mcas #mecfs

[Ami @amislifexx]

@pineconepatch Thank you ☺️ trouble is in the UK it takes 2 years to even see a specialist most of the time :(( we’ve pushed and pushed but just get nowhere. I’m so tired :(

[Ami @amislifexx]

@robinsoped101 @laurast51362949 I want to try glp-1 but worried as my gut motility already quite slow :( so glad it’s helping you 🫂💗

[Ami @amislifexx]

@jewstein3000 I’m on Pepcid and Certrizine, again slightly helps, but doesn’t fully get rid of anything

[Ami @amislifexx]

@pineconepatch I’m on it now. Slight difference, but still symptoms unfortunately.

[Ami @amislifexx]

@jewstein3000 I’m currently on crom, slight difference but still extremely reactive :(

[Ami @amislifexx]

@jomarshall111 I’ll look into it, thank you.

[Ami @amislifexx]

@Anne5757ij I’m on all of those but it barely helps
:((( I’m just struggling tbh.

[Ami @amislifexx]

@LongCovidss2022 thank you :)

[Ami @amislifexx]

this was my last holiday before I got unwell 💔 my hair dye was fading but I loved my blonde highlights 💗 if only she knew what was coming
:((( #chronicillness

[Ami @amislifexx]

@seanstidston Yh it’s been 3 years I don’t think they care at all sadly

[Ami @amislifexx]

I don’t think we can ever convince the people who don’t believe in this illness how real and horrifying it is. Even with evidence, I have people I know telling me it’s all my mental health. Genuinely how people can be so ignorant, I don’t know. #chronicillness #mecfs #mcas

[Ami @amislifexx]

Tried a homemade low histamine flapjack with “safe” ingredients and it’s seemed to set up this awful, long MCAS reaction and now I’m reacting to everything and I feel awful. I don’t know what to do, I’m on meds and what about if I never improve :((((( #mcas

[Ami @amislifexx]

@seanstidston distant family members making comments saying I need to get out to see if it distracts my mind :((

[Jammer @acrossthemersey]

“This is your life now.”

A very encouraging article for the “LongCOVID is nothing new” crew, as international researchers are seeing a five-fold increase in POTS diagnoses, especially among young people, such as age group 15-35 years old cited within.