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 Archive, September 2017

New Adventure

As many of you may remember in the summer of 2016 I attempted having a little part time job, this backfired on me when my employer refused to make reasonable adjustments and my body went into an extreme flair up.  At the time this wasn’t too bad, but it did leave me pondering as to what I realistically could do.  In February this year I moved in with my wonderful partner, now as you may or may not know such a milestone negatively affects benefits.  I’d been on ESA for quite a while, but moving in with Dame left me £400 worse off each month. The government’s current system presumes that your partner can A) earn enough to be able to afford to be the sole provider B) Is happy to financially support you.

A £400 drop in my income was quite significant as you can imagine.  So I’ve been wracking my brains as to what work I could do that wouldn’t leave me spasming and seizing in a hospital bed. I’d heard about Younique, a high quality skin care and makeup company that would allow me to set my own hours and work from home. In all honesty I thought it was to good to be true, but this week I took the plunge and messaged a fellow spoonie to get her take on the business. She spoke extremely highly of it, and knowing that someone in a similar health situation to me could make it work gave me home.

So here I am now. Today is the start of my 10 day online launch party, and I’m feeling incredibly excited by this opportunity. If you’d like to see what I’m doing then click on over to https://www.facebook.com/smilesparkleglow/. Fingers crossed that this adventure will be just what I need.