Chronic Illness Inclusion Project

Chronic Illness Inclusion Project


Tea Time

Daniel Moore on preparing tea when running low on 'spoons'.

“Don't wear yourself out Daddy” my nearly eleven year old daughter, still in her PE kit said, almost absentmindedly in response to my own unconscious sigh as I reached into the fridge to start tea. My body ached. An instant later she had returned to her minecraft session with her brother, building a secret base together.

My daughter seems to have this empathetic fatigue monitoring sense with me at times. At other times she's continuing on her own life path, slamming doors, meeting her own challenges and being almost eleven.

The people have to be fed though, so it's not as simple as just not bothering. My wife was still commuting home and had been having her own crazy busy day as a specialist community nurse to deal with.

Early evening as a stay at home Dad with ME is one of the busiest, exhausting and chaotic times of the day. One child might have homework, another is trying to build a tardis out of ink jet printing paper and sellotape. 'Where is the frying pan I wonder?

For goodness sake, I'm sure I put it back in this cupboard this morning!

“No, right now you can't put the TV on!”

I look back in the cupboard for the 3rd time. It's right there at the front.

I've found, with relation to my sensory overload I have way more tolerance for British kids’ TV than our American counterparts. American cartoons found on those digital channels called Poop Max! and such like seem to have little content but are full of screaming and shouting. Always screaming and shouting, or maniacal laughing. It's constant. Give me the Mr Bean cartoon or Dangermouse anyday. Maniacal laughing and doing a stir fry are not good when you're exhausted and feel like you've already done a boss level with the dude who's laughing.

Living with ME is like constantly trying to beat the boss man from a video game in real life, but having to attempt the level 40 times before you manage it rather than the 3 that most kids need. I've given up trying to really play video games with my kids. The occasional Mario Kart is my limit. My response times are just never quite fast enough. I'm quite safe to drive to the village to buy milk, but ask me to guide Luigi through that fiery underground level with the big swinging axe thingamies then that's another matter.

I love being around for my kids. I love being playful with them and being curious about the things that make them tick. I love that this illness has forced me to take a path that has enabled me to get to know them more and be present as their Dad. I just hate that it's come at the expense of my health. Before I became ill with ME, my wife and I often talked about how it'd be great if we could swap roles, for me to work part time and for her to go to work full time, as she'd been itching to get her nursing career back into full swing. While I was genuinely up for that, I'm not sure we would have made that adjustment as a family so smoothly.

Now, here we are, a forced but happy relocation and 16 months later and my wife is loving her full time work, my kids are thriving in their new schools and making good friends and I'm a dad who spends two hours in bed every afternoon just to summon the strength to make tea. Life is bittersweet. It's taken me a year to accept that I'm probably not returning to my career any time soon, and some very beneficial therapy to help me come to terms with not being a breadwinner. Oh, I was fine with not being the main breadwinner, but why was it so hard to lay down my stubborn traditional masculinity and just accept that it was OK to not earn any money and to be OK with the fact that I couldn't. Women are expected to relinquish or splice their careers for motherhood, I've also had to see that the value of being there for my kids far outweighs whatever money I could possibly make.

I was encouraged to read Grayson Perry's book on masculinity recently. He stresses the need for men to reinvent masculinity for the age we're living in. Men need to know, chronic illness or not, that to let go of ‘work’ for a while is acceptable and should be normalised in a gender equal society. Only then can women in heteronormative relationships be free to develop themselves effectively and only then can men discover themselves and let their machismo guard down. This is no easy feat however, especially while living with a chronic illness and brain fog.

Soya sauce. Swimming costume for boy tomorrow, sort socks, Dinner money. I need to sit down, now. Before I collapse.

“Daddy! What's for dinner?!”

Grrrr I literally just told him. 3 times.

Daniel lives with his wife and 2 children on his parents' farm in Northumberland. He experienced ME as a child before making what seemed like a full recovery, only for it to come back in 2018. Daniel blogs and is passionate about sharing the male experience of ME with others.