I’m tired of fighting. Strike that. What I’m most tired of is being intentionally ignored by those in a position to help, to make reforms, and to actually make a difference. Their apathy makes me sick. And being innately sensitive, it literally makes me sick. The panic attacks where I find myself running out to my back garden, even in the rain, and telling myself to just breathe. The bouts of depression where I cry for no reason, but for every reason imaginable. The anger where I find myself yelling at the dog or the cat or anyone within earshot because, well, there is no justifiable reason.

I am so incredibly angry at the bullshit (pardon me) we see nearly every day in the news of billions of euro being wasted on projects that will see the rich get richer – all masked in the idea that it’s for all of the people’s benefit. But I know full well who will pay, at the end of the day, for those wasted billions. It will be the most vulnerable of our society. It will be children & adults like my son. So, to those making these decisions at the expense of vulnerable lives, I can honestly say that I hate you for it. I hate what you are doing to me, my family, and my fragile son. I hate what you are doing to all of those in need across this beautiful island who are equally worthy but who you, apparently, find unworthy. And I hate that I feel hate. But at least I feel something rather than have the apathetic soul it must take to dismiss the most vulnerable among us.

Lately, I have been saying aloud the 7 words I never thought I’d say about being a carer to my beautiful son.
“I don’t want to do this anymore.”

And I hate myself even thinking those words, let alone ever speaking them.

I’m exhausted, drained, tired. I need to re-charge but I can’t. I’ve tried every tool in my bag of tricks from my former life when I was a therapist. There’s 2 expressions from the therapy world for us who worked in the field: 1. Therapist, heal thyself. 2. You can’t be your own therapist. I know, they contradict each other. Don’t be surprised by that one. So, I’ve been trying the first one but to little success, so it seems.

I need a break from caring. I’m waiting on funding approval for in home respite. (I haven’t had any since June 2017.) And you all know the fight regarding Loco Parentis where parents are restricted from leaving their home during that respite, so assuming the funding is approved, it won’t be what I truly need. Some people say take what you can in terms of in home nursing respite because it’s better than nothing. But part of me doesn’t want to take those crumbs which I know won’t nourish me, because taking those crumbs is like being on a diet: If you have a small taste of something you desperately want, it only makes you want it more. And so, you find yourself not even wanting to taste it again and, instead, you just want to give up on it altogether.

And that’s me growing apathetic towards life.

Carers should never get to this point. Where we just don’t care anymore. If we do get here, it’s a failure of support systems, not a failure of us personally. If we do get to this point, that’s when apathy sets in. Can you imagine thinking that if you had a heart attack, the time in the hospital actually sounds like a nice break? I had this very conversation last week with a fellow carer! If you’re not a carer and you’re reading this, let that line sink in. That is exactly how low many of us are. 

I won’t give up, because I can’t give up.
I’ll probably keep on fighting, because I have to.
But the cost is high.
The cost is my overall health.
The cost is what my son requires.
The cost is a happy, functional family.
And that is why I feel such hate.