One step forward, two steps back...

I danced around in a banana onsie, celebrated the birthday of a good friend, went for a coffee at Starbucks and just generally had a good time, trying to live a "normal" life the last couple of days.

I was feeling like I was finally getting a bit of energy back - not having to sleep as much throughout the day to cope.

But today these silly little questions came creeping up behind my back again and gave me a proper scare. 

"What if things never get better? What if I never improve to the extent that I'm able to function like I should do?"

I overdid it - woke up with grumpy lungs. Sats down, heart rate up and extremely short of breath.

Brilliant!

This probably is down to the tiny cold I caught while not isolating myself at home...

But will every little bug attack my lungs and nibble away at them? There's not much left to munch on.

Every cold seems to set me back, leaving me in a worse condition than I was before. It's a vicious circle and right now I don't feel like there's an escape! 
I'm not saying there isn't one...but I'm fed up with not being able to find the right key to the locked door.

It's like I'm living in a bubble - and this bubble does keep me safe a lot of the time. But unfortunately it isn't particularly strong and doesn't carry me far. It pops so easily - then when I least expect it to.

Dear Doctors,

We've had a really difficult time and I'm more than aware of the fact that treating me hasn't been and still isn't easy! 

I know you are trying your best - but believe me, so am I...not just trying ever so hard to be a good patient, but also trying to believe you really don't have a magic wand, secretly hiding somewhere. 

Sometimes I wonder if you are satisfied with my current health situation, or if you forget that it's a 19-year-old who is sitting in front of you, not a fragile 90-year-old. 

Right now I'm lying in my bed with three pillows piled up behind me to make my breathing a tiny bit easier. Got my oxygen concentrator turned right up but still can't get my O2 levels above 90%...hence the splitting headache I have at the moment. 

Even reaching over to my cup of tea which is standing right next to me is making me feel like I just ran a marathon. 

So what do I do now? I guess the aswer is: Wait. Wait for things to improve again…

Actually I have so many questions I’d like to ask you – But I don’t, because I’m scared you won’t be able to give me the answer I’d like to hear.

Best wishes, 

Emily