We walk a tightrope every day and no one seems to understand it. We sometimes think we can deal with a lot more than we can but let's be real. We can't. We are human. We know our bodies and the limitations of them. We may not like it but its our reality.
When things got bad for me, I had to give up so many things like my flute, my last song on that was one I knew from my Grade 1 and I knew it so well I could play without the music. I sat in my room with it and played this song, the first song played on my even older Germinhardt flute that I had had since I was 10. Playing my flute always made me feel so happy and I enjoyed it so much, I won't say that I was at the level of James Gallway but I was pretty good. I remember my mum listening like she did when I was a child to me practice, she always enjoyed it and encouraged me with music and art as they were things I was actually pretty good at.
I wonder of course what might have been, who doesn't. I also had planned to go to university to study Media and Film production, for a passion, or even a career in nursing eventually. I had so many plans mapped out for me and so many things that I wanted to achieve. Don't get me wrong, I have achieved an awful lot over the years and I am thankful that at least my teens and early adult years had some normality. And believe me that is something I will always be grateful for. Maybe its not just about what we have to give up on or what dreams need to be pruned but what we do afterwards to replace those dreams and aspirations. You can blame others until the cows come home for dreams having to go on hold or scrapped but it's really down to you whether or not you find new dreams and new things to aspire to.
It isn't helped that the general public aren't really aware of how serious asthma can be. If I had a penny for every time someone has said things like "it's only asthma, it can't be that debilitating", "you were never this bad when you were younger, why is it so bad now?" or (my "favourite"...) "[Insert name/relation here] has asthma and they're not disabled, so why are you?" I know that sometimes people are just trying to help me feel more positive and able, but sadly it just comes across as condescending and it minimalises the condition. Yes, around 2/3 of asthmatics in the UK have asthma that is manageable, allowing them to live normally. But severe asthma is a complex thing, it's difficult to control and no matter what you try, you're always being careful not to trigger an attack.
For over 2 million people, our reality is that we have to do what we can and often have our lives interrupted as our disease makes us so unwell that we need help or possibly leaves us fighting for their lives. It's horrible.
That's not to say though that we don't struggle with how we feel about those dreams having to die. It took me a long time to accept that things weren't going to be as simple as they were back then. When I went in to a wheelchair after years of fighting like a lion to stay out of one, I will admit that did innitially feel like defeat because I knew I was getting worse but I really wanted to fight it. Admitting that the oxygen was going to be part of things whether I liked it or not and that I need a CPAP to give my lungs some rest and get ready for the next day ahead. It's about assessing your situation and reminding yourself that even if things change in a way you hate, you have to adapt. You have to keep adapting.
The most common thing I noticed is a bad habit of myself and I've seen it in medical communities. There seems to be a school of thought that makes people think that they can manage more than they probably can. I spent the days prior to the last big attack breathless, wheezing and I was struggling to keep myself upright. I try and do everything for myself because I hate having to rely on others. Maybe it's because that's my nature but I tend to try and do everything myself where I can, it bothers me when people won't do things when they clearly have no reason not to be able but that's a story for another blog. I know that I have a habit of saying "I'll be OK...just one more neb..." Anything to avoid an admission due to my concerns(my ingrained worry that whoever goes with me will mentally punish me for disturbing them or interrupting their games/TV/anything else) and because I've had so many negative hospital experiences (not usually due to staff but more often other patients, particularly one such occasions where an old lady attacked me while I was attempting to sleep).
I need to emphasise how wrong this is. Hospitals are supposed to be safe places for everyone who needs them. And no one should feel afraid to access help when they really do need it amd less still, people shouldn't delay getting that help. I know this is hypocritical of me to say as I sometimes try and manage everything myself and really the wise thing to do would be to make calls and get the help but I just don't want to spend the majority of my 30s in the same place that I spent my 20s. It's not an easy environment for anyone to be in. In myself at the moment, I'm exhausted. My asthma has been trying its hardest to push me around, relying heavily on meds and trying hard to shift the green muck that has resurfaced. I find things are knocking me about again but there's this part of my mind that doesn't want to give in. Likely not helped by a stubborn chest infection that refuses to go away.
All we can do right now is keep working with the doctors and do what we need to.
Til all are one.
Wendy xx
