My life on a plate! A place where I get to waffle on about anything and everything, and hopefully raise some awareness about Cystic Fibrosis and organ donation on the way.
Monday, November 13, 2006
The troublemaker herself - Claire my O2 Concentrator.
My cold - having temporarily moved location to my chest causing my lungs to gurgle merrily - is most definitely in its last stages, so feeling rather perky having fought it off with huge amounts of nebulisers, steam inhalation, physio and rest.
On Saturday night, Claire (my oxygen concentrator) - like a naughty child who has not had enough attention – decided to start playing up. The first signs of naughtiness materialized when A went to turn her up to 4litres for my mask, and she stubbornly stuck at 2litres, refusing to budge no matter how far he turned the dial. We rang the O2 company straight away, but decided to wait until the morning to call an engineer out. A few hours later I woke up rather breathless; apparently disgruntled by us not taking her misbehaviours seriously, Claire had decided to stop the O2 flow all together, although had slyly continued to rumble away in the pretence that she was still generating oxygen, and more worryingly the alarm had not gone off.
Somewhat concerned (and a tad annoyed that she had waited till 3am to go on strike) I switched to one of my tiny portable cylinders and phoned the O2 company. About 15 minutes later an engineer phoned me to get a better idea of the problem. I went and switched Claire back on as instructed, and the little ball defiantly rose and floated gloatingly at 5litres. Apologizing, I confessed she now appeared to be working normally, hung up, and returned to bed. Clearly frustrated her non-compliancy stunt hadn’t worked, a repeat performance ensued about two hours later. I rang again (through gritted teeth) and an engineer was with us by 6am. He decided to just swap Claire for a new machine (who I have also named Claire, as naming it in the first place confuses enough people) connected it all up and left. An hour later…the same thing happened. I phoned again, (the poor man on the other end of the line’s voice was a mixture of surprise and weariness, whether due to me ringing consistently or him being on the nightshift it’s hard to say) and this time was told that it is actually probably a problem with the water we are putting in the humidifier (bet the engineer was thrilled having lugged a new machine here at 6am).
Due to Claire’s strike leaving them working five times as hard, my lungs were furious with me and refused to cooperate for most of Sunday. A combination of this, lack of sleep, and the fact that A was tidying the house resulted in quite a teary afternoon. Let me just explain that last reason, it isn’t that he chucks all my stuff away or anything like that, rather that he has to do everything around the house, and I lie on the sofa getting in the way. And I hate it. There is no way around it, especially when my lungs are misbehaving as much as they were yesterday when even sitting still my heart was pounding so hard I could see my T-shirt shaking, but it just always makes me feel furious (at myself predominantly) because of the unjustness of the situation. A rather bizarre trigger for a completely irrational feeling I know, and amusingly (as those who have known me a while will know) I have never been a particularly tidy person, making these feelings even less logical. Anyway the combination of factors resulted in a rather teary afternoon. I sat feeling furious with the world, with the fact A is having to live like this, that I am having to live like this, with my lungs, with the lack of transplant 20 months later and with the fact that more and more things I want to do in day to day life (including regular days out and about thanks to the restrictions on portable oxygen) are prefixed by “after my transplant”. As anyone with bad lungs will tell you, crying is probably the least constructive thing you can do when feeling a tad puffy. I laughed through my tears to A about the fact crying probably wasn’t helping, and then inexplicably cried even more.
Still even though my lungs weren’t particularly keen on me crying, I think it did good for my spirit, as did the gorgeous hot shower I was given and resulting clean fresh hair, which when you are a bit groggy always makes you feel so much better! I sat there with my eyes closed, the hot water and steam helping me (and my lungs) relax. Here was proof that there are still things to enjoy even when you feel most down and incapacitated. My friend sent me a postcard from France last week which had on it a picture of flowers and the following caption: “Il y a des fleurs partout pour qui veut bien les voir” (roughly translated: there are flowers everywhere for those who want to see them). A French version of the English “Every cloud…” saying really, and equally as true.
29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy.
I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.