Posting this after another reminder from my extremely supportive partner that I need to stop fighting my own body and let myself be poorly (said in a lovely Teesside accent).
Allowing myself to stop and let my body take control is one of the biggest learning curves I’ve struggled with. The reality is that chronic illness doesn’t give you a choice. Eventually, I have to succumb to the fact that I’m ill and just let it take over and do it’s thing. The problem for me is: when exactly do you admit defeat?
If I’m completely honest, I don’t like to accept that living with tracheomalacia involves making some pretty serious compromises and adjustments. I still find myself refusing to acknowledge that I can’t do X, Y and Z because of it and I struggle to admit when I need to slow down.
The thing is, everyone is right when they say “your health is more important” and “look after and listen to your body” and it’s exactly what I’d be preaching if the roles were reversed. I just have issues with the fact that it’s not a choice. It’s not my choice to struggle with this and to me, it’s not really ‘okay to be ill.’
Why, what’s the problem?
Being a little bit poorly on a short-term, finite basis is manageable to me. I can deal with cough, colds, scrapes, broken bones and whatever else because I can see an end point and they get better. The difference is that a chronic illness is an ongoing physical health condition that can’t currently be cured and requires ongoing management over years, decades and my entire life.
With my tracheomalacia, it’s not actually being managed at all at the moment. This just means that if I get a cough/cold/infection – it triggers a whole series of events that make my health deteriorate to a point where I am so uncomfortable, I end up going to hospital. There is currently no treatment or support being provided for this, simply because they don’t quite know what to do. Again, this isn’t the doctor’s fault – they’re trying. It’s that I’m in a weird, vulnerable situation that means I know that when I’m unwell there is nothing at the moment that makes me feel better. There’s nothing that soothes my symptoms or provides any relief, however short-term.
This all leads to me feeling angry with my own body. It feels like a let down, it’s one of those situations where I’m both mad at it and disappointed in it…the worst concoction. It all just feels so very personal, like my tracheomalacia is a personal attack on my own wellbeing. My happiness, my social interactions, my work, my relationships, my life. What could be more personal than your own body turning on you when you’re just trying to do the basics?
For me, it’s still really not okay to be unwell. There’s a huge discrepancy between what I want to do and what I’m capable of doing and the frustration is very real. I want to go to work regularly, nothing too glamorous. I want to be able to walk up the stairs without being out of breath, no biggy. I want to be able to commit to days out with my partner and friends, just the standard.
The commitments and practicalities life throws at you don’t disappear just because you’re ill. They certainly don’t neatly time themselves and go away when I’m having a flare up. They keep going. The 9-5 working week sounds mundane to some but it makes me feel human, come on body – let me at least do that!
Rationally, I know that I have to learn to work with rather than against my body. I have to adapt and go along with it, there’s not really a choice anyway so I guess removing the friction between mind and body would make the thing a whole lot smoother.