Picks-at-Flies (picks_at_flies) wrote,

When being stubborn is not so good

Just over two weeks ago, I went back for a checkup. Lung function was up, certainly within current "normal" range and energy seemed to be picking up from the end of the course of IVs. But just in case I was missing something I asked to see the physio and, just responding to her being there, I huffed up a chunk of dark matter.


At that point there was no real choice. I clearly had been missing stuff and I needed something stronger than Chinese herbs and oral antibiotics. I put myself down for a course of IVs. It wasn't a decision I made lightly, but as soon as I made it I realised how tired I was, how much I had been willing myself to be well (and I HAD made significant progress on oral antibiotics regardless). At least with the new techinique of putting in PICC lines with ultrasound I knew it was possible. That happened 10 days ago. In between I had just enough energy to go to Firefly and do some writing.

There were complications. On the Monday my van decided that it would overheat, making me late for the service, so I missed my slot and had to use more energy than I expected getting to my appointments that day. On Tuesday I had four hours in hospital getting the line put in and the first doses sorted. Then partially by the wrong choice of herb, partly other factors, I ended up horribly dehydrated which caused me hours of crippling illness before I understood what was happening and sorted it (with salt tablets; lots and lots of salt tablets). Then my van refused to start and I had to start taking steps towards getting a new car. We've settled on a Toyota Aygo because at this point reliability is the most important factor (over things like aesthetics).

All this meant that for the first few days of IVs I was too tired to really look at my lungs. By the weekend I was starting to consider my posture and osteopathy on Monday really opened everything up. Tuesday my van stopped working so I ended up getting a lift to the hospital on Wednesday. Lung function was about the same, but what made a big difference was getting 20 minutes work with the physio. It seems the phlegm is incredibly stubborn - it's just very thick and takes a lot of effort to move. Overpressure really helped here (it evens out the pressure in the lungs so it will go down impaired passages). And that set a small trend rolling. With luck, I got a cancellation today (again, with a lift) and got a much longer session. Which worked but was so tiring I fell asleep when I got back and almost missed supper.

Which leads me to now. I haven't posted because I have barely had the concentration to do important things (for hall and to get my van replaced). I really should have gone to sleep again but I wanted to get something down. I'm finding I can do quite a lot of thinking, but I only get a couple of hours of reasonable concentration a day - if that. Extra concentration comes from adrenalin, which is fun but needs to be carefully apportioned.

The only other thing to note is that, even more than usual, the timings seem to be out. Partly due to the length of time the Pip (tazosin) takes to dissolve, partly due to working around appointments, partly due to getting distractions, my first dose seems to go in about 10am, my "11pm" dose either about 1am or 3-4am. The latter because I've been so tired I fall asleep about 10ish then wake up in the middle of the night. Except last night I failed to wake up, slept all the way through (about 10 hours) then coughed up whatever moved in the night (from physio and maybe due to having a blanket "tipping" me all night).

So. Really this is typical. And I still need more exercise.
Tags: cystic fibrosis, physio, tiredness

  • Kidneys

    It's worth noting that there's been some rain. Bits of Britain are flooding that haven't flooded for 100 years and the highest water…

  • 8 months in summary

    I had a fairly drawn out first 6 months in 2013. Work was hard, weather was bad and I think I had a hard time recovering from where IVs had left me…

  • How dryness and cold don't work

    When I first started seeing my acupuncturist, I suffered from being in a very damp house (it sat over a spring). Then I moved to a better one. Then I…

  • Post a new comment


    default userpic

    Your reply will be screened

    Your IP address will be recorded 

    When you submit the form an invisible reCAPTCHA check will be performed.
    You must follow the Privacy Policy and Google Terms of use.