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