Monday, November 20, 2006

Oxygen oxygen everywhere and not a drop to breathe…

Having made the bold and crazy decision to go out on Saturday (just to sit in the car whilst A ran a couple of errands as it really was the most gorgeous sunny day), I am out of oxygen again, not that this should be an issue for much longer if I get hold of this new superhightech liquid oxygen, yay! Incidentally for those who are wondering, you don’t inhale the liquid, rather it is stored in liquid form and returns to gas form when released from the cylinder in manner of liquid nitrogen or similar.*

Obviously the oxygen issue has been on my mind anyway, but there seems to have been quite a bit of discussion and thought on it within various “users” within the CF community. One thing that becomes strikingly clear whenever oxygen is discussed is how many people in similar situations to myself either don’t use it in public, and try to get out and about without it, or if their need is really that acutely severe, stop going out all together.

I find this very hard to get my head round. I completely understand the fear, and for anyone who doesn’t I suggest you draw a nice big line radiating across your face from under your nose to your ears with a pen, or tie a piece of string in a similar fashion, and then walk out into town and see how self-conscious you feel. I remember avidly the first day I used oxygen in the shopping centre in my home town. As may have become apparent, the potential purchase of pretty things works as quite an incentive for me, and not only that but when I am faced with a new challenge which is making me a bit nervous, I try to throw myself at it, sporting my best war-face, whooping and tackle it head on. The reason I do this isn’t because I am confident that I will win over whatever it is, but because I am driven by fear, fear that this feeling or issue will grow and the anticipation of it will become bigger than the actual issue itself, and then will be all the more difficult to overcome. We pulled up in the car (there were no disabled bays free so my mum parked in her skewed and amusing “I’ve arrived” manner in order to get me, Denzel my wheelchair and my cylinder out of the slim space) and set off through the car park in the direction of the shopping centre. At this point the butterflies in my stomach were dancing so much I thought I would actually be sick, and I started to cry, through nervousness and anticipation of the embarrassment of bumping into old acquaintances, what they would do and what they would say. Through my tears I told my mum to turn back as I had changed my mind, at which point (as only your mother can) she laughed, told me not to be so silly, and strode towards the shops with even more vigour. Slightly cruel? Perhaps, but having your mother tell you to pull yourself together is sometimes needed, as is someone to push you (no pun intended) when you feel like bottling out.

I think also there is a belief that using things such as a wheelchair or as oxygen is somehow like letting CF win, or admitting to defeat. Whilst at uni in 2003, walking around was becoming an ever increasing struggle and when considering my decline and the state of my health I most certainly took this view. Someone mentioned using a wheelchair to me and I recoiled in horror at the thought. Surely I wasn’t that ill, using a wheelchair would imply that I can no longer walk around, that my lungs have gone beyond that point and that this is the beginning of the slippery slope of losing my independence. It was also suggested that I consider using oxygen at this point at which I completely freaked out and refused on the basis that I was still waking up ok and going to uni and managing to continue living my life, so quite clearly I could manage without. I had a great social worker in Bristol, and she came to talk to me about both factors. She said that whatever I decided to use or not use, perhaps I needed to change my perspective and suggested the following. CF is affecting my lungs more and more, yes. I want to fight it, to retain my independence, and to keep living my life as best I can for as long as possible. Surely in order to increase my ability to fight it, it is sensible to employ any weapons I am offered. So instead of seeing the wheelchair as the step down, CF has already caused the step down, and now I am fighting back by using the necessary means to enable me to do more once again.

Stumped by this novel approach, I chewed it over for a few days whilst I was in hospital, examining all the pros and cons. At the end of the day, she was right. Whether I chose to use the wheelchair or not, chose to have oxygen at night or not, my lungs were getting worse. The only thing using these things would affect would be how much I could do and how difficult it was doing these things. It was at this point I decided to try and change my approach; I would still battle just as hard, but changed what I was battling against, and what I was battling for. I could probably count on one hand the number of occasions when I have come home upset/frustrated from reactions I have encountered, however the list of things I have done and would not have been able to do (or would have enjoyed so much less due to fatigue breathlessness and pain) is endless.

It is the overriding factor which is the most relevant when deciding what path to take, and for me it is more important to retain my freedom and the ability to go out and do what I want to do. I am more scared of being stuck indoors watching life go by than I am of comments and looks (and whilst actually going out wearing O2 isn’t half as bad as I imagined, 90% of the time people don’t even notice as they are too absorbed in their own lives but very rarely you do get stared at or get the odd comment) and for me the latter is the lesser of two evils and a small price to pay.

I actually get a lot of confidence from mini challenges, and consequently (hopefully) mini-victories. For anyone facing a personal challenge where any of the above rings true, push yourself, if you cant bring yourself to do it, rope in someone who you know will push you (I tend to go for my mum or A as I know they will also put up with any howls of rage and pouty faces induced by being pushed), as there is no better boost than facing something you are frightened of and coming through it.

*Emily’s very own special scientific understanding and explanation may vary from yours

18 comments:

Anonymous said...
This comment has been removed by a blog administrator.
James said...

Yay for victories big and small :)

Sazzle said...

Em, you have come through so much and won and you can only be admired for that.. You are and will always be a winner!

If everyone you came across could get to know you then they would learn that 'You're Simply The Best'

You should never forget that.

S
xx

Kat said...

Go Em! ;) xxx

Anonymous said...

What great determination and courage you have Em, its not easy to face the world when struggling. Well done hun.

Sue x

Diana said...

Emily, your blog is so amazing it should be published and essential reading to anyone facing the challenges of health problems. Your recent blog which looks at whether to become a victim of illness or whether to regard it as a spur to action has so much truth in it.

I deal with these issues every day, both as, like you, a determined fighter of ill health and all the opportunities it brings, but also as a psychologist working in general medicine. I see people every day through my work who are bowled over by the challenges of illness, and do not even know how to start to pick themselves up and reclaim a life without becoming just a 'diagnosis'. I've seen so many become an illness, forgetting the life and person they leave behind.

Can you bottle up into a potion a little of your spirit and energy and determination, ability to face whatever is necessary to keep your love for life going, and then hand this potion around to others who need it? And all NHS psychologists would be out of a job!!

Thanks, Emily. I'm going to quote bits of your blog during some teaching I'm doing about psychology and illness. Keep on going. And well done for strutting your stuff in a wheelchair plus oxygen. During my wheelchair-oxygen days I was never quite bold enough to go use the oxygen in public, but quite enjoyed the 'minor celebrity' status I occasionally got from being in a wheelchair. You'll make the wheels and plastic combination hot for 2007 catwalks.

Love and thanks, Diana xx
www.dianasanders.net

Anonymous said...

Hi Em,
I am one of those people you are talking about.. I feel since geting ill I have lost alot of self confidence and I do not use oxygen when I go out so find myself struggling.. As I live on my own I dont have someone to push me all the time. But I am goin shopping on sat.. Not in my local town onw a couple of miles away and I will be using a wheel chair but no oxygen.. Your blog had made me think but I guess Im just not ready to be that bold yet!

xx Sandy xx

Cory said...

I find this very hard to get my head round. I completely understand the fear, and for anyone who doesn’t I suggest you draw a nice big line radiating across your face from under your nose to your ears with a pen, or tie a piece of string in a similar fashion, and then walk out into town and see how self-conscious you feel.

Lol. I need to try that. I already have spina bifida and use crutches to ambulate. So, I'm pretty used to the stares from folks, because crutches aren't even as much of an option for me as oxygen seems to be for you (which is also not much, I know).

I am more scared of being stuck indoors watching life go by than I am of comments and looks (and whilst actually going out wearing O2 isn’t half as bad as I imagined, 90% of the time people don’t even notice as they are too absorbed in their own lives but very rarely you do get stared at or get the odd comment) and for me the latter is the lesser of two evils and a small price to pay.

Here in this country, the USA, it is extremely common, if not universal, for CFers and tx recipients to be advised (or required) to wear a mask, generally a surgical mask, when out in public to protect them. I don't think you've ever touched upon this; maybe that isn't widely done in the UK. In the past, it has amazed and saddened me how self-conscious people get about the mask issue. It is for their protection, and as such, helps them live an active life. However, when I was preparing to attend a benifit concert about 120 miles north of me for a CF girl I know, I sort of got that weird feeling of self-consciousness, even though I am very used to stares everyday for my crutches.

When the concert venue gates opened, I did put the mask on, because hey, I was helping this person out by wearing it (and I was informed recently of a mold issue in my apartment building). I soon discovered that a few people were kind of curious about it, but were very understanding. I also noticed that the girl whose benefit this was also fielded a few questions about hers, but I didn't notice any weird comments (though she has told me about a bad incident at a mall recently). She has also never seemed self conscious about it, even though many patients are.

She does what she needs to live a rewarding life, and you and she have shown that stares and comments are only what you make of them. Both of you need to keep doing the same. Do what you are drawn to do in life, and if mask, oxygen, or other apparatus helps in that quest, then sobeit. Continue to maintain fruitful friendships with these devices! You make them all the prettier, they do not make you less so.

Same with the girl up north of me. She's lovely either way, and she is lively! So are you. You just need to poke your head out into the world a little more if possible, apparatus and all!

Here comes Emily and her throng of sexy lifeguards (the equipment)!

(sorry such a long comment; your post just struck a VERY interesting and timely chord)

Charlotte said...

Hey gorgeous lady, you truly take life head on, and get the most out of it whenever and wherever possible. Have a moment to feel proud and smiley...are you smiling? are you proud? excellent. that's how i feel about you every time i read this blog. So much love to you tiny poppet.xxx p.s. who else makes O2 look so damn vogue? i reckon it'll catch on thanks to your fab bone structure schweetie ;)

ClareT said...

Hi Em. Thank you for the explanation on the workings of liquid oxygen which MUST have been aimed at me as I was the only one who asked and was no doubt the only one stupid enough to wonder/not already know!.. ;o)

(The Abyss indeed...!)

Thinking of you honey. You strong, pink, fluffy, blonde, amazing thing.. :o)

Bev said...

As always sending lots of love and hugs to a very special lady. We have been talking about you lots recently Emily. Lucy loves to tell all of her doctors and nurses about her special friend.

I will give you a ring over the next couple of days. It is slightly manic at the moment as a little lady has a birthday coming up and we have no idea of what to buy her! Answers on a postcard please.

We are still praying really hard for your new lungs sweetheart.

xx

Marjolein said...

You are so right!
Very well said :-)

swissfriend said...

Emily, I am completely in agreement with using the wheelchair and oxygen out of doors. Surely saving yourself from getting overtired can only be a good thing for your general health. Heavens, is the sight of oxygen and a wheelchair really so unusual that people need to stare and comment!! I guess that you may be oversensitive and interpret what is only an interested glance as being more sinister. I have no doubt we will all be wearing masks out of doors soon to protect against pollution -it's already being done in some countries. Who says they are not just admiring a pretty girl; it happens you know. I wouldn't give it a second thought, just do what makes you the most comfortable and enjoy those shopping sprees to the full.

Good on Mum and A for snapping you out of your worry. No way should you stay home when the sun is out!!

Keep on taking care of yourself and having as much fun as you can.

As always,
Janet

Anonymous said...

I agree with Diana, you should publish extracts from your diary in a book. You are so inspiring and articulate, it's practically your duty!!

As for getting looked at when you're out and about, well I know about the self-conscious thing and that's just from using an asthma inhaler occasionally; I'm ashamed of myself!

But what is Joe Public to do? I sometimes offer to help, although I'm afraid of being thought patronising. But I know how difficult great big double doors can be to anyone carrying a lot of shopping, let alone to someone in a wheelchair, on crutches, with a double buggy, or whatever. Please don't be cross with people who want to help.

Of course Swissfriend is also right - people will always look twice at an attractive person.

BTW when I'm shopping if I see pretty sparkly pink things I wonder if you have one or would like one.

Keep fighting Em, using all the weapons at your disposal. And tell your mum I admire her too.

Emmie said...

Sending you a big heap of love as always! xxxxxxxxxxx

Pauline said...

Hi Emily, I can truly relate to your latest blog. I went through these dilemmas myself not so long ago. But as you said, if you don't use the tools you are given to help you along, then CF may win the battle!

It was a truly happy day for me, when 5 months after my transplant I could phone and ask them to pick up said wheelchair. Oxygen concentrator and cylinders were long gone by then.

Good on you Emily. Keep up the good wotk, hope your call comes bery soon.

Pauline

Anonymous said...

"CF is affecting my lungs more and more, yes. I want to fight it, to retain my independence, and to keep living my life as best I can for as long as possible. Surely in order to increase my ability to fight it, it is sensible to employ any weapons I am offered. So instead of seeing the wheelchair as the step down, CF has already caused the step down, and now I am fighting back by using the necessary means to enable me to do more once again."

This is a fantastic quote. I will lock it into my brain and use it whenever I'm given more nebs or meds or oxygen etc xxx

Anonymous said...

Emily just wanted to say a big helooooooooooooooooo 2 u :D & hope you got my email few days ago....
Thinking of you best wishes Elaine & Rach :D xx

ps can appreciate how you feeling to 'some degree' having lots nursing experience etc......still think you doing amazing! 'go girl';)