Friday, May 18, 2012

Physio: repeat after me...

I must do real physio, exercise is not enough on it's own...
I must do real physio, exercise is not enough on it's own...
I must do real physio, exercise is not enough on it's own...

I don't know how this happened but I figured out how to do this technique in early 2010 with the physio and I promised myself I'd keep doing it. But somehow I stopped doing it; don't get me wrong I still do huffing and clear outs but this (active breathing cycle / AD) technique seemed to fall off my radar, probably because I hate doing it in front of people, how sad am I? Now my FEV1 has slipped from 2.85 to to 2.45 in the last two years and maybe this is the reason why; I think I'm going to have to have this tattooed on my chest:

"Sigh out.

Breathe in slowly - pause - breathe out all the way.
Continue like this until you feel the sputum moves or changes.

Breathe in slowly - pause - breathe out, but stop when it feels natural/comfortable to stop. Continue like this until sputum moves/changes.

Breathe in slowly and more deeply - pause - breathe out and stop when it feels comfortable to stop. You can probably hear/feel crackles as you breathe out.

When sputum is high enough - huff/cough to clear.

Each breath in should be slow.
Each breath out should be like a sigh, so air is moving fast but not forced.
Keep mouth open as you breathe out."

Rant over ;-). Anyway, I went to see the musculoskeletal physiotherapist the other day down on Pearce Ward, and had my neck vertebra popped / exercised by the physio; very painful but hopefully worth it in the long run to stop my neck aching and my spine curving. She's given me three exercises to do: 

  • the pulling your neck back in one where you look like you're giving yourself a double chin 
  • the arms together over your head back stretch, 
  • the one on all fours stretching my arms out and trying to touch my breastbone on the floor, which I can't really do (but will keep trying anyway.)  
I have another appointment next week so we'll see how it goes.

At the main clinic I was disappointed that my FEV1 blow was up a bit but still fairly low (2.45) after the orals (despite me feeling better) and have decided to go on IVs next month. My team also suggested nebbed meropenem to me at my appointment - apparently it's just normal meropenem (like you have in IVs) which can be nebbed normally. My LF seems to have declined a bit in the last year (from 2.8 to 2.5), so I'm wracking my brains to think of something that will help, (see rant above ;-)). I currently take Colymycin and dNase, I tried TOBI but I couldn't tolerate it so fingers crossed for the Mero trial, will try it after the IVs. I also (whisper it) have slacked a bit on my nebs in the last few months, missing out on my Colymycin neb in the evening so I'm feeling a bit of a fool really, CF is a full time job and I've been a part timer of late ;-).


Me said...

The double chin exercise is the one I was give to do, I hope they work for you! It sometimes works for me if I remember to do it 2-3 times a day, but on top of everything else when the hell are you supposed to do it?! I didn't know you could get other types of nebs, I might ask about it at my next appointment, hope the mero does the trick! Do your nebs you naughty boy! x

Woody said...

I will ;-) learnt my lesson the hard way...