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?