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