"I
don't appreciate clouds enough", words I said today whilst
sitting in my wheelchair under the puffs of white decorating the blue
sky. I spent the better end of 7 months in the hospital. You know in
that Buffy part in 'Once
More With Feeling'
when she sings "hey, I died twice"? Yeah, I did that three
times. Not to start a competition, but hey, I'd win. I just don't
have the nifty slayer powers.
It
started with some poor judgment on my side (which I'll get into in a
future post as I have yet to find the right words) and a bipap
vomiting situation. But for context let's start with my initial
hospital stay. I went in on November 11th, 2025.because my
body was losing strength. I could not hold down food, my body was
swelling uncontrollably which was causing my kidneys to be a risk due
to my illness of acute intermittent Porphyria. My stomach was loaded
with acid and I was overall not doing well. I had been hospitalized
earlier in the year for similar symptoms but not half as as bad as
this time. The only option was to put me on a ventilator to promote
oxygen. My nausea was a constant battle I'd been facing for close to
a year but it was getting to the point of me being unable to eat or
drink anything. Did I mention I was seriously weak? Enter here the
bipap machine. I was left unattended and threw up into the thing,
causing it to shoot the fluid back down into my lungs causing sever
damage.
This all led to them putting me on life support, hoping to restore some of the damage caused to my lungs. Then I had a heart attack. My body was under too much stress turning it into a lethal weapon to itself. I got through it. Once seen as stable enough, they pulled me off sedation.
The rest is fuzzy to both me and my loved ones. I remember celebrating when I could finally hold a spoon to feed myself soup. The pain and misgivings of learning to walk again, as my body had detreated from being put under. Regaining the strength felt like a long process. I wish I knew that'd be the easy part.
I was two days before getting released, on Christmas eve no less, when I could a cold. Given my immune system not being up to par, it immediately turned into pneumonia. It felt like a snap of the fingers and I was backtracking again. My scans were gradually getting worse. I was desatting. My oxygen levels were getting alarmingly low again, but my husband vouched for no bipap machine given the first time. I was moved from the ARU back to the ICU. I was getting worse and worse so they put me back under in the hopes that it'd give my body time to recover. So here I was again, back on ventilator, back on ECMO (Extra Corporeal membrane oxygenation), and playing the waiting game.
I don't remember anything when I was under, I know some people do and others don't. I think I'm fortunate to be the latter. My Mother went through a similar medical experience and remembers every minute of being locked inside her own mind. How she isn't without sanity for that is beyond my understanding. It takes a lot of strength.
They
did their best working on my lungs, but with no avail. So the next plan of action was looking for a lung
transplant, but most places were declining. Weeks past and they were unable to find anything. Some might say it is miraculous but my scans were starting to come back a bit better; spotted compared to the white out of the initial
x-rays. I was healing. After some discussion they decided it was time to ween me off off of sedation, but alas, I was taking
too long to wake up. That had happened on the first go around so they somewhat brushed it off as "normal" for me. Then upon request from one of my doctors, who remains to be a Godsend in this, they did a scan of my head. I had
suffered a really bad stroke.
They didn't think I'd make it. All the hard questions were being asked of my loved ones, as in, when to stop fighting and letting me go. It's difficult for me to think about the hardship that fell on their shoulders during this time. Especially my Mother who lived across the world with no way of getting to me. My husband stayed by my side and is still coming to terms of what happened. I will forever be grateful for the love that was sent their way, whether that be friends checking in or the hospital staff for being there beyond just professionalism.
Slowly over time, I started to come to. My eyes would flicker and my
husband was trying to find any inkling that I was still me. Strokes are terrifying and kill vital parts of you. They did test after test which involved various painful methods that were necessary to see if my body was responding. I remember flashes of this time. The odd memory comes randomly to me but overall I lost at least 4 months of memory.
It took a few weeks, then months, but I recovered. I'm still recovering.
I lost my ability to talk, move, communicate. I was a shell of a body but still me inside. It was isolating and incredibly frustrating. We had to come up with a letter system so I could attempt to ask questions. I was drugged up most of the time which led to a lot of confusion. I wanted to go home, whether that be in America or the UK. I just wanted out. I wished I had died, often. It felt too hard to continue on like I was. Nothing was working right and I couldn't control it.
Time moved forward, as it does. I was transferred between hospitals and rehab centers due to insurance problems. Don't get sick in the US, dear reader. It is a clusterfuck. In June of 2026 I was finally home. Things have been rough but we're managing. I have a nurse, occupational therapist, and physical therapist visit me weekly at home. I go to a dialysis clinic four times a week to routinely clean my blood and remove fluid that my body remains to retain. I suppose I'm still losing time if you factor in the hours I spend doing these things weekly. But, I'm lucky. Beyond lucky.
I've grown up with a hatred for my body but after this whole story, I have a decent amount of respect for it's strength. Against all odds, I shouldn't be here typing this. I should be gone. There is no conceivable answer as to why I chose to keep fighting. My loved ones, obviously. But I'm a weak person. I always have been. I wear my heart on my sleeve and even Fibromyalgia (you can read about that
HERE) makes my body frail. I don't believe in subjects that most people would coin this as, but I do believe in fate. I think almost losing my life made me have a life. Hence the appreciation of the clouds today and the strength to write this out and return to online journaling.
I'm now 30 years old. You'll find me journaling like crazy so I don't forget anything, reading to escape into other people's minds, going on weekly outing to experience the world, and writing to find solace in words again.
Hi, it's me. Anne. Let's look up at the stars next.
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