Posted in Archive, January 2021

Adjusting to The Impact of Lockdown on Pacing

I’m sat on my settee staring up at the stairs and I know there is no way I am making it up them tonight. Pacing. It wasn’t even a wild day in the McDowall Tunstall house, yet, here I am, fairly sure that I will not be trying to crawl, or bum bump my way up to bed; not when there’s a comfy alternative already made up here with a lot of blankets, courtesy of a kidney infection, why waste so much energy. Now I bet your thinking what crazy think has she done today to end up not knowing how to get to bed?!

Well for once I actually behaved! Instead I’m pinning the blame on good old lockdown number three. Previously when the UK went into National Lockdown’s Stefan hadn’t actually started school, so we weren’t affected by it, thankfully. This time however, he has to take part in Live Home Learning sessions, and most also get homework finished and emailed into school in between session one and two!

Now to make it an easier adjustment for the children (mainly Stefan) they’ve got a devised timetable for the week, all built around the school day, filled with Live learning, Joe Wicks, crafts, freeplay, our one hour allowed outside time, story time, music etc. This has gone down a hit with the kids, they are happier, calmer, listening better and over all it’s much a more positive day.

Here’s where I got it wrong.

You knew it was coming didn’t you?

I remembered to factor in breaks, such as snack time for them. What I didn’t think to was put blocks on their chart saying Mummy recovery time. Which I need. For example, after Joe Wicks, if they are spending 10 minutes watching AlphaBlocks or Magic hands while having a drink and cool down, I can sit with a heat pack behind my back, a pillow under my knees and just allow my body to breath, rest and recover enough for round two.

It is no surprise to me that readjustments needed to be made. Normality is a shadow of what it used to be, and providing a new normal whilst living within four walls is hard and exhausting. This is why we pace. Today I aimed for fun and hit the milky way galaxy, hence spasms, dislocations and extreme fatigue. Adjusting to pacing in lockdown is hard but it’s something that with time we will learn; hopefully sooner rather than later. I’ve learned a lot. I’ll tone it down tomorrow. This lockdown is a beast that throws unwelcome hurdles when we sort of expect it (thank-you newspaper leaks), and we just have to keep on adapting.

Posted in April 2013, Archive

The Go Blue Movement

A little while ago a lovely woman called Rebecca Sharp who lives in America dyed a section of her blue to raise awareness for Dystonia (her father suffers from the condition). I thought this was a fantastic idea and we got talking. We have managed to make it into an international movement with many people agreeing to take part to raise awareness for Dystonia.

Dystonia Awareness week starts tomorrow (Saturday May 4th) and runs until Sunday 12th May. The idea is that during this week people either dye a section of their hair blue (you can even spray dye it) or clip a blue extension in, to show support for Dystonia and raise awareness. It is really easy to get involved with and a Facebook event page has been set up which you can easily join, and you can share photos of your blue hair in! The page also has links for those who would like to donate to either The Dystonia Society (UK) or the Dystonia Medical Research Foundation (USA). Both of these charities do fantastic work for Dystonia sufferers however they are in need of funds.

It’s an easy and fun way to raise funds and awareness and I urge you all to get involved!! Every person who joins in makes a huge difference. So join in with The Go Blue Movement! https://www.facebook.com/events/450399491712134/