I was talking to a friend/fellow carer the other day. She understands where I’m at emotionally as a carer. She said something that has stayed with me. She said that whenever she sees me write about being exhausted and wanting to give up as a carer, she thinks of this photo and how once I had – even for those brief 10 minutes – the ear of one of the most powerful men in the world (no comments re: politics, please) and was running a national charity foundation in America.

Now, just 9 years later, I can’t get 10 minutes with anyone who can make a difference here in Ireland and I do nothing other than exist as a carer behind closed doors, unseen, trying to make if from one day to the next working around the clock providing nursing-level care that I know I can’t keep doing on my own for much longer.

So yes, I’ve been thinking a lot about what she said. This journey changes a person in a lot of ways. One of the ways is how we see ourselves as carers. For me, these last number of years have really drained my sense of self-worth, self-confidence, or the feelings of contributing to the greater good that I may have once had; that sense of self and identity which comes with fulfilling work, whatever it may be.

To be left now constantly fighting for the slightest of crumbs and to be heard is soul-destroying. It can also make one question what is their value.

I’m trying to rediscover that sense of self-worth, that confidence in who I am as a person – not just as an invisible, forgotten carer. But, it’s hard…damn hard…when the years have repeatedly brought battles which knock you down time and time again.

Too many politicians feign interest and concern. Frankly, so do many activists who claim to care about human rights. Where are they when it comes to the profoundly disabled and their carers? They are nowhere to be found.

As I sit here tonight waiting for Brendan Bjorn’s feeding pump to finish its course so I can begin his nightly medicines routine, I type this quick blog realising it will likely be read only by those who are also carers. Like many aspects of this journey after 17 years, maybe it’s nearing time for me to stop fighting so hard for politicians to hear our plight in hopes of affecting change. Maybe it’s time to just focus on a new journey to rediscover myself, and indeed to build myself back up as a person outside of my caring role.

Just maybe, it is time.

Perfect timing. Brendan’s feeding pump just began beeping and the caring work continues.

That was a quick 10 minutes.