Monday, November 13, 2006

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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.


It's Her said...

Hi Emily,

I hope you're feeling perkier today! Hopefully there'll be no more nonesense with your concentrator!! Take Care, Rosie xXx

klics04 said...

Hope your feeling heaps better today. Sending you big hugs from Cyprus. kevnlesxxxxxx

Anonymous said...

Hi Em,

Sorry to hear you had a rough night. I was reading something on the internet a while back and came across a very good quote which really keeps me going

"Every set back is a set up for a come back"

Thought it might help you too. Keep your chin up sweetie our transplants are just round the corner! :)

Lisa xxx

Anonymous said...

Bonjour Miss Em,

I love the quote; Matisse surely rocks.

Hope Claire v2.0 is behaving herself and that your valiant breathers are working easier today.

Clean hair and flowers make the world go round - or at least they should :)

Best always,

~ James

Emmie said...

Sending you oodles of love poppet and big fat sunshiney hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Anonymous said...

Hope you're feeling better today, and the cold is diminishing rapidly :) Take care and keep seeing those flowers :) xxx

Anonymous said...

Hi em, hope your feeling a bit better today hun , sending you all our love as always Alan xxxxx

Anonymous said...

Well, at least you have made imaginary friends of your equipment. Hang in there and don't lose that spirit.

Anonymous said...

oh em! i won't say anything.. just send you lots of love and hugs xxx

Anonymous said...

That naughty claire.. well I hope you have no more probs with the new one now you know what the problem was! Hope your feeling a bit more pink today and your getting the better of that cold.. Yeah your right about warm showers making you feel better

xx Sandy xx

Anonymous said...

Many huge (((HUGS))) Em, Typical of you that, laughing even while crying. I could feel the frustration in your words though and so hope the call comes soon hun.

Sue xxx

Sarah Milne said...

We are always thinking of you. Sending huge hugs and hopes for some happy days.
Loads and loads of love from Sarah and a specially bug cuddle from William xxx

Anonymous said...

Oh cripes, Claire sounds like a spoilt brat to me.. probably something to do with the name!! ;o)

On a more sensible note, I am posting a poem that helps me in trying times, just in case it has the same effect on you. (If not, ignore! Offended I will be not!! (And now I'm sounding like Yoda... ;o)

Love and hugs

Clare xxxx

This Too Shall Pass

If I can endure for this minute
Whatever is happening to me,
No matter how heavy my heart is
Or how dark the moment may be-

If I can remain calm and quiet
With all the world crashing about me,
Secure in the knowledge God loves me
When everyone else seems to doubt me-

If I can but keep on believing
What I know in my heart to be true,
That darkness will fade with the morning
And that this will pass away, too-

Then nothing in life can defeat me
For as long as this knowledge remains
I can suffer whatever is happening
For I know God will break all of the chains

That are binding me tight in the darkness
And trying to fill me with fear-
For there is no night without dawning
And I know that my morning is near.

...Helen Steiner Rice

Anonymous said...

Hi Emily, how miserable to have to go through all that misbehavious with Claire. I find Clare's poem below right on the nail - hold on to your belief not matter how rough the day (and goodness knows, I know how difficult that can be!! - and that's why you need support of those who love you to root for you when you are down) and you will come out winning, trust me. I do think we are tested to our limits sometimes but hang on to your faith in yourself and your ability to get better and you will.........Take care sweetie and let the tears flow, very therapeutic and healing

Fi said...

Frustration is a terrible feeling- I know it well and it's made me cry too. Hope things are on the up, sending you lots of love and autumn air :)


Anonymous said...

Hi Emily
I just wanted to send a big frown to Claire and a big hug to you. You inspired me to buy something I saw at the weekend - an Edward Monkton (he writes the rather strange black and white greetings cards) keyring with a grinning pig and the words "May his joyful smile remind us how much there is to be happy about" - you always seem to see the good/funny/happy bits in any situation, and it's a trait I'm hoping to follow.

Katie x

Anonymous said...

Big hugs hunny. Hope Claire behaves herself perfectly for you in future, as the last thing you need is unnecessary hassle (and the last thing the O2 company engineers need too, by the sounds of it!). You amaze me in being able to find comfort in the smallest of things.

Lots of love from us all. xxxxxx

Anonymous said...

hey chick,
sorry to hear of the not so great night. hope things are going more smoothly today, both on the technological appliances and the maybe-this-doesn't-make-sense-but-
its-how-i-feel emotional front (i have to agree though, a good illogical cry does often do wonders!)

and a big 'yay' for overcoming the cold!

loads of love and hugs,
rachel xxx

Anonymous said...

That Claire looks damn pesky to me. I think you should put her in the naughty corner and don't let her out until her behaviour improves. But then I guess you'd be stuck near the naughty corner too. Umm there's not much punishment you can dish out to something that you need to work pretty well. Maybe she's just jealous of all your pink and sparkliness and wants to be pinked up a bit too. ;) xx

Anonymous said...

hi Emily, we have not formally met although our paths have crossed in the RBH lifts this year a couple of times. I wanted to come and say hello to you while i was in the RBH but was too chicken!!!

Just wanted to say how much you inspire people! I have signed up to be an organ donor - mind you nobody would want my asthmatic lungs!!!

Keep thinking pink happy thoughts.

love from

Anonymous said...

Dear little Emily,
have a lovely evening and a beautifully restful night. Sleep tight,

It's Her said...

Your Claire is a lot fancier then my Martin...Looks like mine was the 1980s version of your concentrator!

Rosie xXx

Lizzie said...

Oooh sorry to hear about the impetulant child that is Claire (is that the right word?) Hope Version 2 behaves better!
Lizzie xxxx