Saturday, 21 February 2015

what a wheeze....






I started this blog when I was rediagnosed with breast cancer and working as the director for Scotland of Breakthrough Breast Cancer. A tricky combination that made life challenging and my blog helped me make sense of it all. A few years on, I blog about lots of things to do with healthcare, leadership sometimes even politics but I rarely blog about asthma. But it is probably the thing that has sapped my wellbeing much of my life.
Of course often I don't notice it, think of it even, as my symptoms are well controlled with a combination of treatments and the avoidance of triggers. Food can be my downfall and I know to avoid wheat, apples, chocolate (not fair!) but sometimes I get caught out. Mostly it's a virus that pushes me down the slippery slope.
I have steroids at home to take if I get acute symptoms quickly and usually wait too long to take them. I have a cough that shakes the rafters at times and I want to wear a sign that says " I have never smoked" because I notice the look on people's faces. Mostly, like this weekend, I feel dog tired when its bad. Do I check my peak flow- yes occasionally but I know when I feel my necklace is too heavy that things aren't good. When I cough no matter what I eat, that I need to take more treatment. When I'm worried about going out in the cold especially if its windy and I know a walk on the beach with the dog is unthinkable, I know then I need to take more of my inhalers. 
Like many people with long term conditions, I do my best to get on with it. I try to hide its worst impact and I self manage the avoidance of triggers and the side effects of treatments. I balance taking the blue inhaler with the risk of the shakes that make you look like you have had a night on the tiles. I balance taking steroids with the knowledge they will affect my sleep and that the combination of too many inhalers and steroids will give me a horrible headache.  Like many people with long term conditions I don't talk about it, I even feel  guilty for having to give in to it. Even laughter makes me wheeze.
 I'm not seeking your sympathy ( honestly!) but as someone who is a health activist who works frequently with people who struggle with many hidden conditions I thought rather than blog about cancer today I would speak some of the truths of asthma instead. 
I'm feeling resentful of having to give my weekend up to the effects of asthma. I'm trying to stop my thoughts of how could I have thought of a political career when I find myself felled like this at times. After all if I had a more obvious disability I would surely not want to exclude myself or others from public office? And I know now to not make career decisions when I feel like this as it will pass. I need to remind myself having asthma is not a weakness, it's a condition I do my best to control. So this blog is for the huge number of us who live with the hidden conditions and do our best to live the life we want to. Let's give ourselves a pat on the back.....because frankly sometimes it's just a long hard slog.
So this weekend I will ensure I have time to rest and recover and maybe tomorrow if nothing improves I will start the steroids .....
But the good news is this time means I'm reading Sally Magnusson's book Where Memories Go and feeling in awe of her talent and admiration for her courageous commitment to improving our understanding of dementia. Words can change understanding and attitudes, especially those written with such eloquence and compassion. 

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