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A cuber with ME/CFS #MillionsMissing

My 12 year old has myalgic encephalomyelitis, more commonly known as Chronic Fatigue Syndrome or ME/CFS. There are a quite a few symptoms, but in my son the biggest ones are lack of energy and brain fog.

When his older brother started solving cubes, Z took it up too. He can solve a cube, but isn’t nearly as fast as his brother is.

Next Sunday, he will be attending his competition as a competitor.

scrambled-2x23x3-400

Because of his ME/CFS, we have had to plan things carefully. On Saturday, the only thing he has is a piano lesson. The rest of the day will be quiet so he can have energy for the next day. He will be going to his dad’s on Saturday night, so we need to make sure he has an early night.

Solving a cube may not take much energy for most people, but for Z, mental exertion can be just as tiring as physical exertion. This means we have had to restrict the events he can sign up for. He has chosen to enter the 2x2x2 and 3x3x3 events and doesn’t expect to get through to a second round. Brain fog may also impact on his times…

Add to this the excitement of a competition, all the people, noise, and cubing. This can drain energy too. The last competition we went to, he was exhausted by the end of the lunch break and was glad to go home, even though he really wanted to stay.

Instead of spending the whole day at the competition, I will be picking him up at lunchtime so he can rest, hopefully able to go to school the next day.

I’m posting this here as part of the Millions Missing campaign. My 12 year old is missing the fun and excitement of being a full participant in these competitions. I am grateful for the program he did last year with the Royal Children’s Hospital that helps us plan for these events so he can participate for at least part of it.

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