As anyone who has been ill knows, even having the 'flu shrinks your perspective on things until you are entirely preoccupied with how you feel and how to get through the day, praying for the end of the temperature, the aching bones, the sweating and depression. But then you get better and you slip back easily into your life; all the things that you do that makes a life and that make it 'worth living' as we say.
When you have a chronic and progressive illness it becomes difficult not be defined by that illness as it affects more and more aspects of your life and increasing disability makes it harder to do all the things that you want to. When you have the 'flu you don't bother or are too weak to stick to your skin care regime or bother with your hair, or getting dressed or even eating. You can lie in bed confident that however bad you feel you'll be ok in a week or two.
So while I don't want my blog (or me) to be entirely about my medical condition it's hard not defined by it as everything I do is increasingly influenced by it. Perhaps that's not surprising, but I still care about my usual things; I'm not going to stop looking after my skin, or worrying about ageing!
I was diagnosed with COPD (Chronic Obstructive Pulmonary Disease) about 12 years ago at a relatively young age to be diagnosed with smoking related COPD. The significance of that is that along with that diagnosis I was encouraged to stop smoking, the one thing that can help to slow down the progression of the disease. It was thanks to a GP who noticed that I was too short of breath when I went to the surgery with a chest infection and who referred my for a chest X-ray.
Of course I was worried that he thought I had cancer (I'd never heard of COPD and I didn't have cancer) and then had further tests thinking that it might be asthma (I could get away with continuing to smoke?!) but did get the COPD diagnosis. Giving up smoking was a challenge even knowing I had lung damage and it took me a few attempts before I finally stopped.
I hope people are more educated about the risks of smoking now- I grew up in the days of Marlborough Man and the Rothmans Pilot and smoked my way through the glamorous (Passing Cloud, Sobranie Black Russian and Cocktail, Gitanes, Disque Bleue...) and not so desirable (Number 6, Embassy, Senior Service -that Dad smoked). But I don't think it would have stopped me hellbent as I was to embrace the 70's. So over 30 years of smoking took its toll.
I now have 'very severe' COPD' and have become increasingly disabled by my decreasing lung function. Links on this blog will tell you about the various 'stages' of COPD and there is plenty of more technical/ medical information if you are interested.
In a nutshell though, I have over 250% excess air in my lungs which means that although i can actually breathe and inhale my lungs are so damaged that can't get the air out. So my lungs are huge and take up too much space in my diaphragm. I have recently been ill with an 'exacerbation' and went down to a scary 47 kilos (i'm 5' 4", sorry I grew up with feet and inches so I'm like those people who speak 2 languages at the same time) so not much room for my stomach and getting enough food in there!
For someone who's always cared about clothes a fashion it's hard not having any clothes that fit and I don't want to buy new jeans in a tiny size when I'm trying to put weight on (with a nutritional drink called Ensure; i have to bring 2 bottles a day which adds 600+ calories. It's like over-sweet, thickly liquid ice-cream).
I can convince myself (just) that the current fashion for 'oversized' clothes particularly athleisure wear is a bonus so I have bought a couple of giant sweatshirts that I've been wearing that I know don't really conceal my thinness but at least let me feel like I'm hiding from view a bit. But ha! who in my neck of the woods knows that; I'm in the GP surgery not standing outside Matches fashion!
Getting used to being 'disabled' involves partly not having any choice and 'acceptance'. That is such a hateful word. One of the things that makes it easier is other people (not those able-bodied who think it's ok to park in disabled bays) who help. I went out with my new wheelchair the other day and couldn't get it back into the car, even with the hoist. So a lovely man leapt to the rescue. And if you are ever unable to do your shopping Waitrose will do it for you, or just the bits you need help with; I was told to sit down and offered a cup of tea while the worker on the checkout did all my packing and then loaded it into the car for me when I was too breathless to do it myself, all without any fuss.
Being unable to do what you want makes you feel really vulnerable so when people just help it makes all the difference. I hope my big thank you email got to the right staff.
That's the COPD part of me. Otherwise I love art (the drawings in the background of this post are ones I did of some of the paintings we have, done when I couldn't breathe well enough to do much else) clothes, books and furniture - we (I have a husband) moved into our dream mid-century modern house 2 years ago which we filled with period furniture but sadly I couldn't get used to the location so we're moving again (whoops). I'd relocated from north London where i'd been for 30 years and all my points of reference had gone. It wasn't so much the big things I missed; you can always visit the galleries, theatres etc, but I missed my dry cleaner, the local shops, my neighbours, the bus and tube routes, the places I had that tethered my to the area and my life (style).
I suppose you have an identity as a Londoner as well and yes I liked the sense of living where you could get everything that you wanted. That was 30 miles away and now we're going much further away to live in the country proper. I've persuaded myself that the pollution in London is too bad for my lungs but I'll always miss it there; I always thought I'd be able to spend my retirement riding the London bus routes; Crouch End to Hammersmith or Stoke Newington to Victoria, all life to look at for free.
I hope the move to the country isn't me thinking that I'll be able to hide away from everything, that it will be rural bliss. It will also mean setting up a whole new support structure; i've had a fantastic Hospital at Home and a community respiratory team treating me for recent illness.
After all the transplant still beckons. But it will be quieter and less stressful I think, even if I'm no longer at the centre of the universe!