Tracking my illness

Sunday 4.8.2019

I’m not scared of dying.

That’s the first thing I write on my list of the things to tell my nurse. It’s also one of the reasons they should have sent me to the therapist a long time ago.

I haven’t feared death for a long time. Three years ago when no one knew what was wrong with me. When a doctor after doctor told me that they couldn’t help me. You learn to accept the worst-case scenario. I may not live to be over 25. I may never write the books I have dreamed of. Never have my first kiss. Never see all the wonders of the world.

Maybe that’s the reason why last autumn it was so easy for me to accept it for the second time.

I may die at any moment but there’s nothing I can do to help it. I’m not scared. If I die then I die and that’s it. If someone crashes to my car, I cut my arm with a knife or there’s some kind of catastrophe, it’s deadly. My life hasn’t been like others’ for a long time. When something happens my body dies alone. Calling help or going to hospital won’t be possible and I will just die.

Because I don’t fear dying but I fear dying in hospital.

The memories of that sunny day in August haunt me in my dreams. I wake up in the blue hospital bed covered by a baby blue blanket. Dark blue curtains cover the bed from the emergency room. My bed is the last in its row.

I sit up only to see the doctor standing at the end of my bed. Her mouth curves to something seeming like a smile when our eyes meet. She says something but I can never exactly recall what. My answer never comes.

My lungs stop working. I can’t breathe. First my legs don’t work, then hands, then fingers, in the end my whole body is locked down. I scream but no sound comes out of my mouth. My eyes won’t stay open and all I can see is hues of blue through tears.

The doctor talks but all my energy is used to trying to get her to help me. It feels like I’m going to die. My body has stopped working and in second there won’t be enough oxygen for my brain.

“I have other patient and don’t have time for this.”

The words I can recall from word to word. She walks away. And I’m left alone dying to the last bed of the emergency room. In my dreams, no one comes. It takes forever before I wake up in my own bed gasping for air me in the past needed so badly.

But these nightmares are the easiest. It’s a story from the past and I already know the ending. Someone returns to me – the doctor or maybe a nurse. They help me to call my mom. It feels like a forever but then my mom is there and I know I won’t die alone. And now a year later it’s easy to say that my body wasn’t even dying. No, it was just a panic attack.

Those nights I survive but then there’s the other dreams. The ones about future I can’t just hide under my bed after waking up.

16.7.2019

Tuesday

This weekend was busy. I spent some time in Helsinki. Saw the new Spider-Man movie with my cousin S. We fought over does Spider-Man have web naturally or has he made web-shooters himself. Both of us were correct. I grew up reading the comics, she grew up watching the first movies. Kind of silly, because I’m the younger one of us.

Sunday went by doing nothing.

On Monday we had planned a summer day trip. My sister was sick and couldn’t come – she kept coughing through the night. So, we left 9 am with my mum and cousin R. Too early to be alive. Drove a few hours having conversations about everything and nothing at the same time. I live and also die for these moments. It’s like walking on a thin rope between hurting and having fun.

My family is kind of dysfunctional.

We talked about how my uncle had left a plastic container for my grandpa to store used needles. My grandpa is a retired veterinarian who still seems to have too many returning customers for anyone’s sake. My mum has done this thing several times – told my grandpa to put the needles to somewhere save right after giving a dog or cat their vaccine. Does he do it? Never…

So, before we left for our summer trip we had a good laugh (and inner cry) with my mum. The plastic container and message written using BIG lettering my uncle left for grandpa were still on the table of his clinic. The issue? There were used needles around the container but none in it.

Maybe now you understand how I grew up being the most passive-aggressive person ever…

But now back to my travel story!

We met my other cousin S and my aunt in idyllic Finnish small town. Visited like a million idyllic shops they had there and I ate terrible ice-cream. My nurse called just when we were visiting the most interesting shop so I had to skip it. Maybe just a good thing because I may have ended up buying too much stuff. Apparently, my nurse talked with a therapist – they don’t have anything they could help me with. So, I have just normal meeting with my nurse next week where we try to figure out what to do with

1. my fear of hospitals

2. still active mysterious disease – probably just anemia.

Our summer trip continued to this outdoor museum that I only remembered visiting before after seeing their small red granaries (is this even the correct English word for small houses where they used to store grain and other things?). The museum part had three small rooms and cost a fortune to get in. However, no regrets – my mum paid for me.

The last stop after buying strawberries from farm and ice-cream was my relatives’ summer home. I could spend my summer in an old country house… Just writing, writing, writing. By to way, I have been writing a lot lately. Not for 2 hours like I promised for Camp Nanowrimo – hadn’t been in good enough health for that – but several pages of my new notebook from Muji per day.

11.7.2019

Thursday

My sister painting in the sunlight, I’m writing something bigger than life and for a moment there’s peace in our home. I live for these moments when everything seems so simple. My cousin R visits us. She tells stories from a school where she doesn’t fit in with the younger ones. Mum brings our dog to spend the day with me but that makes writing impossible – we just lay down doing nothing for hours.

I live for these days between the bad ones. Or maybe now the bad ones are between these days almost perfect?

M-L is visiting my grandpa. We have conversations about my school starting in a month. We drink Pommac from crystal glasses. I can still remember the days when it made me almost puke, now I drink my glass without complaining. Have I been part of too many awkward gatherings in this living room trying to act like a perfect child? When did I learn to drink drinks I hate and eat foods I despise?

Grandpa seems to be proud of me starting creative writing studies. Don’t know should I be happy or not. Everyone is being so supportive but it just feels wrong. They know I want to write, but in reality, they don’t know anything. They can’t see me dreaming of books I will write someday or smiling by myself after coming up with an excellent poem. My grandpa sees me as a good creative writing teacher, mum wants me to be a journalist and my friends never put me above the freelancer status.

I want to write books, tell stories, make people feel things they otherwise wouldn’t.

My sister comes back from work. We drink wine and eat cheese. M-L asks about my sister’s life who tells stories from art school. Grandpa seems tired. Do I like these moments? I’m not sure. Having small talk comes naturally for me these days. Telling stories from my travels, talking about books I have read, asking just the right questions from others.

It’s time to go to sleep. Tomorrow my sister will drive me to the bus station. I’m going to Helsinki again. We will see the new Spider-Man with my other cousin S.

9.7.2019

Tuesday

I was feeling so well and now everything is falling apart once again.

When I started this diary, I did it because I felt like everything was going so well. After so long my days felt fine almost like normal. Never wanted to write every post about hurting and hurting again, not getting out of bed for days.

I hope I could tell you happy tales. Speak about the stupid things I have done. Tell you about the wedding I attended this weekend or share the small talks I have with my sister after she returns from work. There are so many things to do, to achieve, to try. Why can’t I just go on and write about those?

Why once again I’m bedbound on the edge of dropping down?

My school starts in a month. What if my health doesn’t get better before that? I got time for a brain scan and it scares me to the end. On the other hand, I hope they find something. At least they could do something. But who really wants to be sick?

Maybe this endless tiredness and my body not working is just because of the long weekend full of stress. Or so I hope. I have already made plans for the weekend – will go to see the new Spider-Man with my cousin in Helsinki. On Monday we do a family trip somewhere. Then we go to see pandas with my family and cousins. After that, it’s my grandpa’s book release party. And then only a few weeks before school starts.

Oh god, let me be well to do all that like a normal human being. Is that too much to ask?

1.7.2019

Monday

Some days are impossible like yesterday. My mind is a blank paper – thoughts hidden in heavy mist. Other days feel almost normal. Today. I can live for the first time in three years. My mind is sharp and body not in pain. And I see it in the smallest things.

Today I wrote for two hours. I wrote for two hours in who knows how long time. It has been years. I put on a timer and wrote, wrote, wrote. And then the timer went off, my whole body collapsed, I couldn’t stop crying.

I couldn’t stop crying.

World doesn’t have greater agony than not being able to do what you love the most. Even worse if the reason is your own body. I have always loved writing and then out of nowhere I couldn’t anymore. My attention span would last for 15 minutes most on the good days and those good days were rare. And if my attention didn’t get the best of me, my hands did. I would write for a few minutes only to lose all the strength from my fingers. In case I decided to be stubborn that didn’t matter too much. Not at first. After every word my hands would start shaking and shaking and shaking more.

There were a million stories I wanted to tell. Writing had always been my escape from the darkest moments of my life. But when I needed it the most I couldn’t write.

Today I wrote for two hours and then I cried.

I laid on my floor open laptop marking a few thousand words written. My heart was beating too fast and body shaking from the shock.

My tears weren’t happy nor sad. I didn’t cry for the pure happiness of finally doing what I love nor mourning for the lost years of my youth. My tears weren’t for the life I can finally have – studying writing and maybe making my own book after that. Nor were my tears for the life I may have had if this had never started – being young digital nomad traveling all around the world while writing my book as side project.

I was crying of pure surprise.

I started crying because I hadn’t even noticed the time flying by. Two hours had just vanished to thin air leaving behind words I thought had sounded quite good. But more than anything my tears came because I had just used two hours writing and my body felt okay.

After two hours, I didn’t feel pain, my limbs weren’t sore and most of all I felt normal. I felt like any 24 years old writer after a few hours writing session.

Only a few weeks ago I wouldn’t have believed for this to be possible ever again. My illness had driven over my hope with a truck. I had made myself believe that not writing the novel I had always dreamed of would be okay. I was satisfied with poems and short stories. And that’s why I cried.

Because maybe I can have a real life and try to achieve my dreams like everyone else.

29.6.2019

Saturday

I feel good. Or good for my standards. Not normal yet but good. My health is jumping up and down like crazy right now. Some moments I can’t even stand up while others I feel like conquering the whole world. Better this than living every day in the endless mist of not being able to do anything.

People keep telling me to rest on good days because I’m not yet better. Just going there. And so I just rested, watched some Netflix documentaries and wrote a little bit. Nothing interesting to tell the truth. A first few episodes of this one drama where the protagonist falls for his best friend who would never like him back. I may have cried. Reminded me of my first love.

You have to decide will you keep a friend and be in pain or lose a friend and still be in pain but maybe not so long. Unwanted love. It’s the saddest love on earth. When you love someone you don’t want to. You know they will hurt you million times more even without knowing it.

My heart hurts from the memories of what once was.

At this point I had to go out. The four walls were closing in. Bought Kinder Maxi bars from the store. Saw a girl waving a big flag in pride colors and her friend a little shyer covered in the colors asexuals. If I was braver maybe I would have said hi. Maybe even go to the pride parade. But just maybe things like that aren’t made for socially anxious people to go alone.

So, I spend hour browsing old books in a close-by flea market. Didn’t want to go home. I left only after they shut down the lights.

Sent some messages back and ford with L. She always knows how to make happy even if I feel like we are getting too far apart. Still, I can only be happy – she has found love. I couldn’t share with her that I had been crying for half a day so far.

28.6.2019

Friday

Didn’t leave home today, hiding from the world. Watching Project Runway, trying to write. Laying on the floor in a small nest made of pillows and blankets. Some days are like this. Eating fruit salad and a whole bar of chocolate but not anything else. Three cups of tea. Rooibos and vanilla – in the shop they told me it would make insomnia only a dream of the past. Note to myself, never trust people selling tea. Can’t sleep at night nor at day.

Today was a bad day and there’s all I have to say.