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.

Crash

After 13 years you'd really think I'd know better.

You'd think I'd know that if I try and do too many nice things, I will inevitably get a massive MS kick reminding me that I can't. Or at least I can't without incurring a penalty of some sort.

And so it was this weekend.

On Friday I had a girlie lunch, then after school I took my daughter swimming because that's the secret quiet time at our local pool when you get to ride the slides without a huge queue. 

This is also a top time to find a changing room per person rather than squeezing two slippy people into a chlorine infused cell and carefully co-ordinating putting pants on in a way which avoids elbows-in-face/knee-in-chin/disfiguring bra-twanging injuries.

It was great, daughter went down the big scary slide for the first time on her own AND jumped in the deep end. Very proud.

Then hubby and I went out for the evening to see our very talented musical friends do their very talented musical thing at a gig. We'd volunteered to help man the​ doors to take payment, email addresses and give out CDs.

(To be completely honest, I'd volunteered for this purely because I got to stamp peoples' hands with that exciting band name stampy thing that you get at gigs. I may have got a bit carried away with the stamper enthusiasm and imprinted the band name on one poor bloke so hard he split his pint, but never mind, because: stamper joy.)

Then on Saturday I took daughter/budding fashionista on a lengthy shopping trip which was surprisingly free of I-want-this-deeply-inappropriately-sloganed-t-shirt stress.*

Then Mother's Day (question: why the clocks going forwards and the loss of hour's sleep on this of all days?) was a very nice lunch and afternoon with mum and dad.

And the penalty for all this loveliness? The resultant crashes. By Friday night my speech had slurred and my legs had gone weak, by Saturday afternoon pain had flared up and by Sunday morning my left eye had become even more blurry than usual. Plus the boring, boring battle of exhaustion. Suffice to say work this week has been a bit of a struggle.

But this is the dilemma when you have a chronic illness – is the payback worth the pleasure?

The choice between knowing you'll feel like total crap afterwards but grabbing the opportunity to do it NOW because you may not be able to next time.

Yes, I am aware that I should be a bit sensible, measure out my spoons and just suck up the fact I'm missing out. And sometimes I do. 
But sometimes I just don't want to.

So this weekend I made my choice and I pushed my luck, so I will have to ride out the consequences. 

Because they are my friends, this is my family and she is my daughter.

And that is always worth it.

:: Crash by The Primitives 

*Although apparently not free of cringing. I was deemed embarrassing mummy when playing a lunchtime game of song title charades in a busy cafe. Jumping across a busy restaurant while trying to represent the song Leap of Faith is apparently not a cool thing for a grown woman to do. Who knew.