Thread by @support_mika_

Mika’s story in their own words:
supportmika.noblogs.org/deutsch-mikas-…

#supportmika #CCI #MECFS #EDS #notgivingup #solidarity

In 2015, I started slowing down. I was learning ecological construction methods while staying at self organised community projects in Scandinavia, messing about on roofs, rampaging around forests, having a whale of a time.

That winter, it began to get harder to get up in the mornings. I was less able to participate in collective life.
Early 2016, I knew something's wrong. I’d left Scandinavia and come home to East Germany where I lived with my girlfriend, and continued to feel unwell.

In summer 2017 I made my last trip out of the house which was not to a doctor. I attended a bookfair at a social centre close to my house. I remained in an armchair and suddenly, the world took on a horizontal clockwise spin. This was my new permanent outlook on the world.

The next 2,5 years were a parade of doctors offices. As my #pain, #discomfort and pervading sense of weak, fluey #sickness increased, and I was forced to retire to bed, I received a string of negative diagnoses.
#nodiagnosis #raredisease #chronicillness

Every ’-ologist’ shook their head and said, “it’s psychosomatic”, “try exercise”, “weight loss”, “psychotherapy”, “try getting a job”. I missed my job badly. Missed walks & riding my bike. Visiting my family & friends. I was #fatigued all the time. At least I had my online world.

Summer 2018, I got a low grade fever & terrible upper abdominal pain. Multiple visits to A&E and specialists, with no answer, only antibiotics; I spent new year 2018 laying flat on my back in bed, ribcage on fire, grimacing at the ceiling & wondering what the heck had gone wrong.

My online world, my solace, disappeared from view. Email correspondences dwindled & I said my goodbyes on social media, only able to steal glances at a screen before a terrible sharp pain would begin in my inner ears, forcing me to curl up in a ball, eyes closed, and lay still.

In winter 2019, I got in to see an ear nose throat specialist, who gave me my first useful piece of news.

“Your issue is not in your inner ears. It is in your neck. Something is disrupting the blood flow in and out of your head”.

Back home in #Scotland, my Mum became acutely unwell. I set out by train&boat, for a 36h journey home. My 1st time seeing my family in over 2 years, due to my weakened state. I arrived home and thankfully my Mum soon got out of hospital. But I switched places with her.

Over the next few months I would lose over 32kg in weight. This process continues to date. My liver began to hurt terribly, keeping me pacing the room through the night in a cold sweat. The area surrounding my pancreas began to grumble. It felt as if my organs were shutting down.

Continue reading Mika's whole story @

supportmika.noblogs.org/deutsch-mikas-…

#nodiagnosis #RareDisease #MECFS #ChronicPain #chronicillness #meawarenesshour #MEawareness #MEspine #EDS #CCI #Scotland #Leipzig #LongCovid