For a long time, I've acknowledged and accepted that my chronic conditions impact me in ways that I cannot control, predict or plan for. And although I'm mostly "well" and manage day to day, I've accepted that with all of my conditions and the impact they have on my body and mind, my life expectancy is going to be much shorter than that of my friends and loved ones. That's a whole journey in and off itself.
This week I had my first massive flare up in years. When I say massive I mean in terms of the pain, the impact on my mental health, the complications and the impact on my ability to do simple day to day tasks. I was in bed for hours wondering when to give in and go to A&E. Was this bad enough? Would they acknowledge or believe me? Was it worth it?
And then the headache started, like I'd been hit in the head with a metal object. It felt like someone was crushing my skull, pushing on my right eye and hitting me repeatedly on the back of the head.
It disorientated me.
It scared me.
It made me panic.
Was this it?
Was this the time the headache wasn't just a headache but the beginnings of a stroke or inflammation in my blood vessels in my neck and head?
Was this when I go?
How I go?
In agony and feeling alone?
I wasn't home in Cambs and near my friends, I was away with my masters course in London at the time and just needed a hug, some reassurance, some love. But this is the thing about pain conditions, they isolate you.
People don't understand,
You can't see it,
You can't feel it,
So you can't understand,
So people distance because they don't know what to do or how to help.
I distance because I don't want to be a burden, it isn't bad enough etc.
It's the hope that kills you. Hope and trust are closely linked. If you have found it hard to trust people, then you often become a realist and try not to hope to much... Hope is really just a (realistic) expectation that something good will happen, and that you have some control over it.
For many, it might be difficult to be hopeful because they don’t have a source of hope they can immediately point to, or they have continually been let down by loved ones. So, the reality is, even with acceptance and understanding, the realities of hopefulness, trust and life, make going through these things a lonely and isolating experience where you feel like, this is when I give up. This is when I don't have the strength to fight any more and I drown.
If someone you know is struggling, let them know the lines of communication are open. If they mean something to you, show them through actions because they've heard it before and words are cheap, if there aren't the actions to back them up.
Anyway, I'll bounce back, it's taking longer each time, (like a ball, each bouncze makes it harder to return to the starting point). but I'll get there, eventually.
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