A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 16 August 2017

Monsters and angels

It's the school summer holidays at the moment and the whole six weeks are akin to sitting precariously on some sort of MS seesaw.

Balancing the joy of child-at-home with the payback of, er, child-at-home.

During the normal school term, our daughter is at school for five days, I am at work for three - the two spare days I have are rest and recuperation days.

And, as anyone with a chronic illness and no energy will tell you, these days are pretty crucial. But in the holidays R&R is, ironically, pretty hard to come by.

So far we've had a really lovely time with trips out, bike rides, play days with friends and a pretty impressive shoe shopping expedition which saw four pairs of shoes purchased and at least 350 tried on.*

We've been running to a complicated pattern of holiday clubs, kid swapping with friends, time with grandparents, work meetings and extra training.

(There's a detailed spreadsheet pinned up in the kitchen because there is no way my battered memory would cope otherwise.)

On the upside, the extra time with my daughter has been fabulous - but on the downside, I don't get my two days of recovery time per week.

And now, in week four, it's particularly noticeable.

I'm getting very, very tired and the just-about-held equilibrium is in danger of tipping out of control.

And since we're going away next week, I'm keeping everything crossed that MS doesn't decide to suddenly vault showily onto the seesaw.

Landing legs akimbo, head thrown back, laughing like the wholly inconsiderate bully it is. 
Leaving me grounded while it rides high on the opposite side.

Here's hoping the playground police see fit to intervene and force it to play nicely because it's our family holiday that's hanging in the balance.


:: Monsters and angels by Voice of the Beehive

* I bought heels! This may or may not have been wise.


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