It really has been a year...

I had this post all ready to share. I started it off saying: It has been a year...A post about how everything started and where I tried to explain that it feels a bit like someone took my life, tossed it in the air, gave it a good spin and added a few extras.
But then I deleted it.

I felt more like saying: I think I have a déjà-vu and I don't like it.

Well but realized that wouldn't work either as it was real and actually happening. I was there where everything started a year ago...In hospital. It was like it was starting all over again, even though it never really had stopped.

The evening before I got admitted I had a bad, scary asthma attack. It was a sharp one. Started coughing and just seconds later I was in a full blown attack. Was lying on my parent’s bed with my laptop on my tummy and chatting to a friend when it happened. Didn't even manage to get my blue reliever inhaler. So there I was now sitting on the floor barely moving air in and out of my lungs. My heart was beating so fast I expected it to stop every second. My parents came rushing in the room with my nebulizer and nasal cannula. Even though I knew my nebulized bronchodilator was the only thing that would get me out of the worst part of the attack, I kept pushing the mask, my Mum was holding in front of my face away. I kept telling myself: "Breathe Emily! You are going to be ok. No, you aren't going to pass out, you are going to be just fine." Don't give up, you've got to push through this." Slowly but surely it got better. I was keeping my nebulizer mask on my face and I was able to relax my respiratory muscles a bit. My breathing started slowing down and I was actually getting air in my lungs.  But I'm going to be completely honest I had a minute or two where I thought I wasn't going to make it.

I don't think I've ever gone downhill so fast. It was like a big smack in the face and there wasn't much I could do to stop it from getting worse.
The next morning I knew there was no way around hospital but actually accepting that I needed help was a different story.
I was absolutely miserable, frustrated and tired. Plus annoyed that my lungs were just being selfish idiots.  

And as always I pretended everything was just fine, when it really wasn't. And then it just suddenly hit me. It really had been a year...
So instead of posting that post, I ended up wanting to discharge myself at stupid o'clock. Well and that wasn't happening. I knew it wasn't. But I was determined to make it happen, even though I really didn't know how. While I was planning my escape, I went to the bathroom and washed my hair, without having a towel. Which was a particularly clever move as I had a fever earlier. Dripping wet I changed into fresh clothes and dried my hair with a spare T-shirt - Again, really not clever.
Now I was soaking wet and just as unhappy as before.

Actually, there was absolutely nothing anyone could have done to make me feel better. Not even make it all better cuddles from my Mummy were helping. Eventually, my Mum did manage to calm me down and was able to go home.
But dear nurse, telling me there was no need for me to get so upset will make me feel angry. It's entirely up to me to decide when I had enough.

The next morning I still was far away from being a happy camper but the doctors promised me they only were keeping me for as long as really necessary.
And even though I knew I had to be in hospital to keep me safe and make me better, I hated every single second. It just makes me feel sick when I think about how much time I have spent away from home the last 12 months.

But if I look back on everything that has happened and I manage to look past all the scary and frustrating moments...I really can say: It hasn't all been bad!
It has been a challenging and difficult time but I have learned so many things, I wouldn't have otherwise.
And I do think I am lucky in a way. I've not had to go through this alone. I've had my family and friends right by my side the whole time.

When an invisible illness becomes visible

"No I'm never going to go out with my oxygen!" - Turns out I did.

"But I don't want people staring at me!"- I have learned, just to stare back.

 

Arterial blood draw

The first time my doctor talked about putting me on supplemental oxygen was in March after having repeatedly bad aterial blood gases. My first thought was: "Never in a million years!" Gave my doctor the "you must be kidding me face" and made sure he really knew what I thought about that idea. Actually I still was in hospital for a severe exacerbation of my asthma, when I was given a few brochures to look at. Went back to my room and made sure I placed those brochures as far away as possible from me, while telling myself "It's not going to happen. I'm not going to run round with an oxygen trolley, no way hosey!"

And it actually really didn't happen. A lot did after that conversation with my doctor, but oxygen didn't.

 

Well not at first anyway.

But eventually it did.

 

In June, while being in hospital for my asthma once again, my doctor came to me and told me there was no way around long term oxygen therapy (LTOT) this time. I must admit I wanted to give my doctor the “you must be kidding me face”, but I didn’t. I knew he was right. I couldn’t walk more than a few meters without feeling I was going to pass out.

 

Mr. Oxinator Jr. aka Oxi

Going outside with my little oxygen concentrator for the first time was a big deal. It was the moment, I lost my ability of hiding that there was something wrong with me. The moment my invisible illness became visible. Whenever I go out with my oxygen trolley people stare. It’s a normal reaction when someone seems something unusual.

But I must admit some days it really bothers me, no matter how often I tell myself "It’s ok!" It might be ok that people are looking at me, I’d probably do the same. But it’s not ok that I’m not ok.

The last few weeks I’ve had some really good but also pretty bad days. Days where I’ve been able to leave my little friend at home, but also days where I’ve really needed a bit of extra support to get enough oxygen in my blood.

Accepting things you don’t like is really difficult, but I'm glad I have this portable oxygen concentrator. It’s made things possible, that wouldn’t have been otherwise.  

July 2014

 

More than a simple question...

I’m going to start this blog by asking you how you are feeling.

"So, how are you?"

A simple question I get asked a lot. But what do you say, when there’s not a simple answer to it.

If you know me, you’ve heard me saying "I’m fine" far too many times - especially in moments I clearly wasn’t okay. But if I told you, I didn’t and still don’t want you to worry…would that make my answer acceptable?

Yeah I must admit trying to make you believe I’m ok in the middle of an asthma attack isn’t very convincing, but there have been times where I did a much better job at telling porky pies.

So why do I say I’m fine, when I’m actually not?
Well in a way it helps me to get on with life. I try not to give myself a chance of feeling sorry for myself. Obviously it still happens, but I’ve just found if I put a smile on and pretend I’m okay, I actually really feel better. Happier! A lot less frustrated and annoyed with the whole situation. In a way I know I’m pushing something away from me I can’t actually change, but I can choose when and where I face the reality.

June 2013

Because the reality is:

I went from being an active 17-year old, to a not so active 18-year old. Went from going to school, to spending a lot of my school days at home or even in hospital. And the hardest part for me is, that I went from being able to breathe properly, to having to put a huge effort into getting air in and out of my lungs.

Breathe easy! Easy cheesy…well not so much when you are wheezy.

Don’t get me wrong I do have good days - Yeah I have really good days too. Days were I can do more or less everything a healthy person my age can do. And I need those good, happy days to stay positive on the days, where I feel like two plastic bags would do a better job at being lungs than mine.

Post "I can't breathe night"

When I wake up looking like death warmed up it’s not because I spent the night partying outside, it’s because I spent a fair amount of my night coughing, wheezing and sometimes really fighting for every breath. Waking up not being able to breathe is a horrible feeling and yes I get scared. I try to stay calm but no matter how hard I try, I panic.
Some mornings I can’t even crawl out of bed to get my breakfast because I’m so short of breath. So I just end up sitting on the edge of my mattress, waiting for it to pass. Some days it does, others it doesn’t.

Bad lung day?
The thing that makes everything so difficult is that I never know if or when my lungs are going to behave...or not. In fact I can be feeling really good one minute and really poorly the next.

So what do you say, when you want to be fine, maybe even feel fine, but actually really don’t know if you are?