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.

24.7.2019

Wednesday

I try to write a message to B but my fingers shake too much for the characters go into the correct order. It’s almost 30 Celsius outside and still, my body sweats for a totally different reason. Pure luck that I drove my car safely to the hospital. No feeling in my legs. It’s impossible to breathe.

But I don’t cry uncontrollably. Every symptom is a little easier than last time I was here – sitting in my car telling my own mind how I’m not going to die from seeing my nurse.

You’re okay. You won’t die. Everything is okay. It’s just your mind playing tricks.

It takes me several tries to open my car door. Dad of three kids in a close-by car looks me oddly but doesn’t ask. I have learned that most people don’t. When I walk to the door of the hospital it opens automatically. No time for turning back. No time for making myself believe in the crazy irrational fears.

When I sit to the seat in front of the registration office it’s not only my fingers shaking. Fingers, arms, upper body, legs, feet, teeth. The nurse checking me in doesn’t mention it. Maybe my file already warns them to not approach. I can’t show my ID to the scanner because it keeps shaking and my voice doesn’t carry to the other side of the class booth.

But I don’t cry. Not this time.

Two older ladies sit on the other side of the waiting room. But I only hear their voices. My eyes are closed for my own protection. Is he okay? They wonder. I would laugh and maybe even tell them the truth if my mind wasn’t guarded by my insecurities. Even opening my mouth feels like a sentence to death.

The nurse calls my name. This is our second meeting but I still can’t look her in the eyes. She takes me to her room and my eyes keep wandering in the corners of the corridor. Counting the tiles calms me down a little. She even mentions that I’m a lot calmer than last time but oh if she just could see inside my mind.

We talk for a while about my anemia. How have you been? Tired or full of energy? Are there fewer bad days? How are you feeling? I count the bottles on her counter, keep trying to remember the lyrics to that one song I used to love. Anything but remembering where I am.

Then we go to the subject that really took me back here.

But I don’t cry.

I can tell her about the last autumn when I laid for hours in the ER just crying, crying, crying. She tells me they had the wrong idea of why I was there. Just a mess up that ended up me alone carrying the mess. She says that happens. I can’t tell her yet what really happened but it doesn’t mean I can get myself out of the memories.

There may be a few tears in my eyes but who counts?

No, I don’t have panic anywhere else. Just here. In the hospital.

Yes, I may seem fine now. It was easier to meet you. I was even able to meet the doctor a month ago. But ER. If something ever happens to me, I will die. Car crash, poisoning, deep wound, broken leg. I will die. I will die rather than ever return there.

The next part I can’t even write. She asked me if I have had bad experiences with doctors before.

I cry. Ugly weeping not being able to breath kind of crying.

She waits for me quietly when I close my eyes trying to disappear. It may take a minute or ten. I’m not really there so it’s hard to say. She doesn’t ask again but I take myself out of my body to tell the story through sniffles. After the story, she once again mentions how it’s sometimes like that even if it sucks.

I don’t ask her the question lingering in my mind – How would you continue after feeling like you’re going to die but no one is helping you? What would you do if every doctor you met told you that “sorry we can’t help you here”? Would you cope after losing the trust to those people who are the ones supposed to help you?

A week ago she called telling me that the therapist didn’t think she would have anything to give for me. But now my nurse has a paper with a panic questionnaire. What symptoms do you have?

  • dizziness
  • numbness in hands and fingers
  • sweating
  • chest pain
  • difficulties to breath
  • feeling like I’m going to go crazy
  • shaking uncontrollably
  • irrational fear of dying
  • crying for hours without being able to stop

We will work on these one by one. So she says. But am I brave enough to believe anymore?

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.

27.6.2019

Thursday

Happiness is spending half of the night shopping second hand books from internet.

My friends and family say I have a problem, maybe so. Last night I ordered 13 books online. This week I have bought 20 new books but I’m quite proud because the total for them has been under 100€. Finding cheap books is my specialty.

And I never buy books I don’t need. All the books I buy are either important, something I can’t get from the library or call for me. My books for last night were mainly about Virginia Woolf. Collection of her essays and letters to go with the diaries I have. Do you ever feel like something is meant to be? Like there something you just have to do? I’m feeling like I have to read everything Virginia Woolf has written about her own life.

The morning after my shopping spree felt deadly. Couldn’t stand up before 4pm. Then went to shower but the floor flooded. Ate old chicken not even warming it up. That kind of day.

But my travel card ends tomorrow and I got email from bookstore to use my bonus credits for them before Sunday. Didn’t even know I had bonuses unused. In fact, it probably made my whole day when the clerk in the shop told me that I had 10€ to use. Got poetry book and book of a woman who travels around Europe to research secret lover of Finnish artist from the last century.

Lately people who travel following trails of historic people have woken my interest. Maybe I want to be one of them? Who knows… I’m still at that stage of my life where I’m not sure what to do. Feels so clear that writing is my thing but I’m interested in everything. Fiction, non-fiction, plays, everything. Everything. I want to write everything.

Today I got new inspiration for a story that I started to write. Group of university friends from different majors coming together. However, one of them falls for another. Unrequited love. “Laughing, joking around and always being there for each other. A perfect tale of friendship. Until one of them falls and feelings get hurt.” I don’t yet know how this story would end.

Do they end together or do they find love somewhere else? But happiness, there has to be happiness in the end.

On my trip to the bookstore I ended up to one of those odd shops almost like a pharmacy but not quite. Asked help to buy tea that helps you fall asleep. Somehow they also sold me 30€ night cream. My stupid anxious self couldn’t say now. This is why I can’t go anywhere…

Peace out!