I have noticed that lately I have been avoiding writing about what it’s like to live with chronic illness.

At first it was because it was confronting and a bit scary to write it down. It was like it had become REAL all of a sudden, instead of just thoughts. Thoughts, that were like whispers of smoke, that you can send away with a wave of your hand, became solid, hard, here to stay.

Then I told myself “but life with chronic illness is not just about the illness. There is more to our lives”. This is true and I will continue to write about the whole life, not just that one part.

But there was something underneath that.

I had started thinking “who is going to keep reading this?” It’s depressing. It was getting me down. Surely I’m bringing everyone else down too.

Many aspects of life with chronic illness do get you down, wear you out.

Here’s an example.

F has a feeding tube, a Mic-Key button. There is a permanent hole in her stomach, an open wound that can’t close because of this silicone tube that is stuck through it. She needs it but her body knows there is a hole and wants to close it. There is a constant battle.

When she moves, it moves and sometimes it rubs, like the other day when she was playing in the sand with friends and sand got under her t-shirt and into the hole. What can I do? This is The Netherlands! Its almost 90% sand here! (ok, don’t fact check me on that but there is a lot of sand everywhere, you can’t avoid it).

Sometimes gastric acid leaks out and that burns.

Sometimes it just hurts, for no discernible reason.

For the first few years it leaked a lot, which hurt and made the hole bigger, which lead to more leaking, which made it hurt more … you can see where this is going. There was not a lot we could do and no matter what we did, it still hurt.

The frustration is indescribable. Your child is in pain and there is nothing you can do. Even after all this time it makes my heart sink like a stone into my stomach when F says “ow, my mic-key hurts”.

The sinking heart is not about her pain, it is about mine. Inside a voice is screaming to the world “what the hell am I supposed to do?”

I can’t do anything so I don’t really want to hear about it. I try to comfort her, to acknowledge her pain. I take care of it and relieve some of the discomfort but it doesn’t really help.

I think we all have a capacity to cope with the fact that there are horrible things in this world that we cannot change. When chronic illness is involved, there are so many things in life, from the teeny tiny to the big, that we get really good at acceptance. But there is so much opportunity to express this virtue that we use up our reserves of “Accept What You Cannot Change” and we become maxed out.

So one of the ways I try to manage is to hide away from the world news. I even get cross with J when he tells me about some new stupid rule the government are trying to introduce that will make the lives of the vulnerable worse. I get cross and ask him not to tell me. My “Accept What You Cannot Change” reserves are used up and that leaves only “Do Something About It”. And this is where it sucks. I don’t have the energy or the time to take action and “Do something About It” either.

That just leaves frustration.

So I don’t watch the news. I don’t talk about the state of the world or get involved in politics (housemates from Uni, you will not believe this is me). This works for me most of the time, helps keep things manageable.

I feel like I should say that I am working on increasing that capacity – finding patience or something. I will write about that soon, but not today.

I used to think we had the mic-key pain under control now  but I don’t know if that is actually true or if F has just stopped telling us. Today she said that it hurts everyday. Maybe she feels it too – that I’m maxed out and that there is nothing we can do – so she doesn’t say anything until it’s really bad, like that sand the other day. That just makes me cry.

Stoma / g tube care tip: About a year ago we starting using bamboo g tube pads. They are really soft, absorbent and reduce/prevent granulation at the site. We get ours from Patchwork Peddler. The redness, irritation, infection and pain has really reduced since using these. I am not affiliated with this company nor do I gain in anyway from promoting them. The pads are just really good and have drastically reduced the pain. F used to cry at some point every day from the pain at her g-tube. Now she doesn’t.