Last night was a toughy. Having just about managed to get myself off to bed without succumbing to narcoleptic attacks in the hallway between bathroom and bedroom after staying awake until nearly 11pm for my IV’s to finish, my NIV started playing up and cutting out on me while I was dozing off to sleep.
NIV essentially works by blowing air into your lungs and helping to suck it back out again,”assisting” your breathing muscles and respiratory system and ensuring a better flow of air – oxygen in and carbon dioxide out – through the night, thus avoiding CO2 build-up and the morning headaches I’d been suffering from for some weeks previously.
NIV is delivered through an almost air-tight mask strapped to your face, which ensures a seal around your nose and lips to make sure that the appropriate amounts of air are being supplied at the right time, with just a small exhaust port to make sure that you’re not re-breathing your own expelled CO2.
When the machine starts cutting out, you find yourself strapped into an air-less chamber which is not only no longer helping you breath, it’s now positively hindering you. Thus, when you’re nodding off to sleep, the odd sensation of forced breathing is replaced by a sudden lack of air and O2, and ever alert to the change, your body wakes you up again.
After drifting off and waking up three times in the first hour of “sleep” last night, I finally threw in the towel and took the mask off. The question now was what to do for the rest of the night. It was now 1am and I had to be up at 7am to do my morning dose of drugs.
I knew if I slept without oxygen, I would hardly sleep at all as my body won’t let me fall into a relaxed, shallow-breathing state of deep sleep since my oxygen levels then drop dangerously low. But with oxygen on, my CO2 retention sky rockets and by morning my body is slowly starting to poison itself and I wake with an almighty headache.
I think in polite circles they call it Hobson’s choice.
I got up and out of bed and sat myself on the sofa, nasal specs on, trying to decide my best cause of action. By 2am, my eyes couldn’t pretend to be awake any longer and I had to take myself back to bed, where I gave in and popped on my specs and tried to get comfy.
Having not tried “normal” (ie – unaided) sleep for weeks, I was surprised to find that my body didn’t take kindly a lying down and insisted on a more propped position than I had been used to with the NIV working. Eventually, after much tossing, turning and gasping for air at occasional moments, I managed to drift off. Surprisingly, I slept fairly continuously until my alarm woke me.
As I’d suspected, my headache attacked. On the plus side, I wasn’t as immobilised as I often can be by it, but it’s still not a pleasant sensation to wake up to. I did my drugs and took myself back off to bed, where I reattached my NIV and tried, fairly successfully, to sleep again.
Finally waking at 11am, I was dismayed to find that far from blowing off the CO2 from my system, the NIV appeared to have simply maintained the same levels and left my headache in situ – not part of the plan. But having got up out of bed and taken some painkillers, things soon righted themselves.
Once the headache had passed, I was delighted to find that I actually felt pretty well-rested and not near as shattered as I’d expected to be after such a late night and rough sleep. I set about sorting through the mass of disorganised paper-work in our new study and catching up with all the bills and demands that had been made of me since before I went into the Churchill some 3 weeks ago.
In fact, after a bad start, today has been remarkably productive. Not only have I caught up on a lot of stuff, I’ve also proved to myself my capacity for work and concentration now I’ve somewhere to shut myself away when I need it. Prevarication is going to get harder and harder now I’m making more and more steps in the right direction and continually proving my abilities and boundaries to myself.
A mate of mine, S, who had been instrumental in helping K make-over the study – taking things apart, building things, moving things, juggling things, drinking tea – popped round after work today, which was cool as I hadn’t seen him since I broke out. Even better, he came bearing a gift which blew me away.
Everywhere my bro travels (and he travels a LOT) he always brings me back a piece of artwork, however large or small, so that I can at least taste a morsel of the culture he’s explored. Over the years, I’ve collected up pieces from Australia, New Zealand, Tonga, Malawi, Egypt, Brazil, America, Italy and others. Last Christmas he bought me a panoramic photograph picture of Rio de Janeiro from his visit there. S has always been a big fan of the pic, but until now it’s sat rolled up on a shelf in my room, looking for a place to live.
Seeing a vast expanse of wall open up above the desk in the study as they assembled it, S took it upon himself to liberate the pic from my stuff and take it off to get it framed. He brough it back today looking nothing short of majestic and I can’t wait to get it up on my wall over the desk. I must confess, though, I am slightly concerned about losing myself in it every time my eye wanders from my keyboard.
The day improved so greatly as it went on that I don’t want to sully it with the Great Allied Respiratory Saga, but rest assured that this will not be the last you hear of it. The new home oxygen service has come in for a substantial amount of criticism in the past few months since its inception, and today I found out why.
My own personal story from today will grace this site in the next couple of days, but if you’re wanting to get a jump-start on the issues, why not check out Oxywalk – a new site dedicated to exposing the problems with the service.
For now, I’m going to quit while I’m ahead and remember that the qualities that make a day good or bad come merely from what you choose to highlight in your day.