Tuesday, May 6, 2008


The thing is, when you can't breathe, all bets are off.  

No talking, no walking, nuthin.

Then you take the meds and things settle down and life trickles back through the airways. Leaving you with shaking hands and pounding heart, from the meds.  A nasty circle.

Asthma doesn't hurt, well not me anyway.  But for a non-painful condition it is very powerful. Breathe being the stuff of life and all that.  I've been asthmatic since about 16, although it wasn't officially diagnosed until I was 19, when I nearly died from it because I didn't understand what was wrong.  WHY couldn't I cross the road without sitting down halfway from lack of puff?  WHY did I have to go up the stairs backwards on my bum?  How could breathing be so hard?

It took me a lot of years to understand how to manage it, and to get over feeling angry at having to accept it as a possible life-time problem.  Many years later, I think I've got acceptance under control, but not necessarily the anger!  Anger for the limits it imposes on me.  Anger for the cost of medical and pharmaceutical care, which is I admit better in Australia than in many other places in the world.  Anger for lost opportunities; missed appointments; stolen coffee dates and the fear and concern my illness invokes in family and friends.  

Anger for having to watch others fear for me.  That's one of the hardest things I think.  My father's fears for me, and his guilt (unnecessary) for smoking when I was small.  The helplessness .. the pity.  Ah, the pity.

A useless thing to an invalid in my view.  Pity, from the receiving end, only works for those who need to be the victim.  Fuck that.  It didn't take me long to realise that I'd manage a whole lot better if I controlled the illness, took my meds, did the exercise.  Carried that bloody puffer wherever I went, sometimes in rather extreme cases stashing it in my bra or knickers, or under a hat!  Living with those little blue tubes sitting all over the house, in the car, in husband's pockets and, for a time, kept in mum's linen closet in case I had an attack while visiting.  But pity... someone feeling sorry for me, when they EXPRESS that sorrow, can be very difficult.  Oh poor me is the message.  But I am not oh poor me, I am cross and determined and utterly convinced that I will continue to be the one in charge.  What others see is not the whole story.

There's an essay in pity.  There's also a far more important essay in using humour to cope.

Anon, anon, I have to take my meds..

1 comment:

infoaddict said...

Greetings Ms BJ! ('tis a Fi).

As someone diagnosed as asthmatic before conscious memory turned up, I suspect I may have had it easier than those, like you, who got diagnosed well into a lifetime. I've never had a time in my life when the relative fragility of my lungs had to be taken into consideration when doing things like ... well, eating, or walking, or laughing, or travelling, or anything. Schoolmates, uni friends, relatives ... all were roped into watching me take my drugs (do this day I suspect some have fond memories of "Mr Whistler", which was a whistling end fitted over one's Intal inhaler, designed specifically to encourage kids to take their drugs - and it worked), to repeat my mantra of "keys, wallet, Berotec" as I walked out the door (it's been updated in recent years to "keys, purse, Bricanyl, mobile").

When a SigOther turned up, the second serious discussion was always "What to do in case of an asthma attack" (the first was "the pregnancy talk" - I start these things early :) ). In a country where fully one in four (that's right; 25%) of the entire population is asthmatic (or is it 75% - one in four ISN'T??), the fact that no-one I've met actually automatically knows what to do scares the living daylights out of me. When almost everyone you meet on a daily basis is likely to be asthmatic to a certain degree, how can you not??

(For the record, it's "don't lie them down, provide a hot drink - coffee is ideal - feed them drugs, call an ambo, keep them warm and calm because panic can and will trigger asthmatic responses in its own right, and don't make them talk because you can't breathe and talk at the same time when your lungs have stopped functioning.").

There should not be pity, or fear, or worry. It should be treated with the same pragmatism as short-sightedness. It's annoying and painful and if you don't have the corrective thing, potentially deadly; but other than that, frankly, it doesn't need to have a song-and-dance made about it.

Although if there were a cure for the damn disease, I'd be the first in line to test it :)