No more training wheels

We were happy to be home and confident in our knowledge of the night-time dialysis machine (I affectionately named Athena. Chris didn’t like it but gave no alternatives so to me at least she remained Athena).

Dialysis box fort on our first night home

Obviously although I say we a lot, it is Chris who has CKD (chronic kidney disease) I am just support staff. Yes, even in that I am an over achiever.

Lucky for me he is pretty good at taking responsibility for himself, and forcibly stopping me from trying to do it all.

So, when I left him to get set up for our first solo night while I got the kids off to bed all was well in our new world.

When I returned a few minutes later, all was no longer well!

Now I don’t know about you and this isn’t always the case for me, but I am undoubtedly the more highly-strung member of our relationship. Don’t laugh, I know it, I’ll own it.

This was just to get started before the months worth of stock arrived

But often when he is panicking (a rare event) I go calm, I hold him, where he would normally hold me.

For us my holding often means holding back…I am an Aries moon, this is no mean feat. I am always pretty chuffed with me when I am able to say less, remain calm and centred and give him the space to regain his equilibrium.

This whole CKD journey I have been more obviously affected than him. I am no fool, and neither is he.

I know that there is a lot going on in him both physically and emotionally but for me, if I feel it you know it.

Having repeated the set-up process many times under the watchful eye of the very experienced Sister A, when he started the set-up there was something he didn’t recall doing before.

Somewhat flustered he asked me, and I had no idea.

This was when I thankfully kept it together and after a few anxious moments and having to throw away the first set, which we mucked up, we were in business.

Relieved he got plugged in and our first full night of dialysis began.

Athena glowing in the dark telling us in the wee hours how the nights inflows and outflows had gone

It is a strange thing to have your husband plugged into a machine all night.

The gentle hum of Athena and the glow of her screen from time to time would take some getting used to.

The alarms when Chris rolled onto the pipe on an in or outflow. It was worse than new-born triplets at times.

Sometimes because Athena is so sensitive it would be an internal obstruction so him physically shifting was often not enough. Those nights we would get anything from 9 to 20 odd alarms.

Half awake all night and half asleep all day was our new normal.

In it together but isolated from reality and other people whose lives continued as usual.

Just like those weeks of having a new-born in the house are kind of a haze when you think back on them. That is how much of it seems to me now.

We were in survival mode. Surviving the diagnosis is so much more than a physical thing.

Sometimes alarms would go off every few min

Physically I could go with him to homeopathic and specialist appointments.

I could make a spreadsheet of his blood results so we could track them ourselves.

I could learn how to read the blood tests and what exactly we were testing every few months.

I could try to support the kidney diet. There was challenge in this, but at least in the doing I felt of value.

Emotionally and Mentally I was using all my tools (I have a lot of them at this point) to help myself cope, but also Chris and the kids. But was it enough?

I wanted to tell myself to breathe, that this too shall pass.

Which I did, many, many times.

But the truth was I didn’t know how it would pass and whether my family would be intact when it did.

So, I worked hard at keeping in the present.

After all I can’t go back and change the past,

And I have no idea of the future.

Feel the love we share, and just be here now.

Moment by moment

Day by day