Staying in this Position, or Sleeping - Exhausted

Exhausted. Just exhausted.
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My current chronic illness story starts in early March 2020 with a fever, sore throat, cough, and shortness of breath. After a couple weeks, I was treated for a sinus infection, which I get every year. I continued to get worse and was tested for COVID 19 in early April, ~30 days after my first symptoms. It was negative.
I was hospitalized 3x in 2020 with bilateral pneumonia. I also developed tracheomalacia, meaning my trachea collapses when I exhale. Before I could get it surgically repaired, they found a tracheoesophageal fistula, a hole between my trachea and my esophagus. That was surgically repaired in April 2021. May 2021 I went to the ER and was found to have a right calf DVT and bilateral PE's. I was on Eliquis for 6 months, delaying the repair of my collapsing trachea.,
In December 2021, I had a right heart cath with 5 minutes of exercise which very mild pulmonary hypertension, the cause of which was never investigated, that body wasn't returning enough blood back to my heart (preload failure), and the blood returning to my heart had a higher percentage of oxygen with exercise instead of a lower one. This was actually my turning point. After doing some research, I started taking mitochondrial support supplements. That, combined with wearing oxygen 24/7 and taking Mestinon, has me MUCH more functional than the first 18 months of this journey.
Further testing showed I now have mild thickening on my aortic, mitral, and tricuspid valves, worsening pulmonary hypertension, and heart failure with preserved ejection fraction. My EMG/NCS showed “modest motor unit potential changes of decreased amplitude, reduced duration, and minimal polyphasia,” though not severe enough to be diagnosed with myopathy. My QSART showed increased latency of the distal leg and foot, with decreased sweat production of the foot as well, which is seen in small fiber neuropathy.
After 3 years of having pulsatile tinnitus, I finally got the tests I needed and found out I have fibromuscular dysplasia. In my case, it's presenting as beading and small aneurysms in my carotid arteries. Further imaging did not reveal any other affected areas.
Using Sequencing's whole genome sequencing, I learned I have Autosomal Dominant Alport Syndrome. That explains the blood I've had in my urine since at least 2005 and the protein in my urine as well. Once again, even when I asked doctors why these things were happening, they were brushed off and never investigated.
I have something wrong with almost every system in my body. My life is nothing like it was prior to March 2020. I'm just trying to make the best of what I have.

[@DNA_diverted]

Feeling the same lately. Trying hard not to hate myself for it.

[@becomingapegazebracorn]

🫂 Beating myself up about it takes to much energy. I'm not even staying awake during the work day anymore. So tired, of everything.

[@frankrinaldi3520]

Hang in there

[@becomingapegazebracorn]

Trying my best. Too exhausted to do much of anything else.