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, October 2015

Saying Yes To Help

When I received my miracle unconditional offer from Oxford Brookes this year my mother and I ended up have numerous discussions on how I would manage on my own at uni. These talks mainly focused around the idea of having carers, 3 or 4 times a week, to help me with basic household tasks that some days are just too much for me to manage. At the time I was insistent on doings myself and put my foot down. I was determined to be an independent, strong, young woman who could manage all aspects of life without any help. Numerous other adults alongside my mother, pointed out that my mum would be right, university would be a reality shock, not only with an increase in work load but also with a huge increase in social life.

Needless to say I listened to what everyone had to say, I took it on board, and promptly carried on with my own plans. Not only did I want to be independent but I was also worried about the judgement I may face from my peers at needing care. My bedroom is rather large, which is great for days when I rely on my wheelchair, but I can easily overdo it by cleaning without realising it. I tried for two weeks before I resorted to carers. Giving in and saying “Yes, I need help!” was honestly the best decision I have made since being here. My fears of being judged and avoided like the plague where unfounded. There have been no drawbacks, just pure relief. I have more time and energy to put towards tasks that need doing for uni without having to worry about little things like hoovering.

My next task to tackle is pacing. For 3 years I have listened to my neurologist tell me to pace my life and stress the importance of it; and for three years I have simply nodded my head and carried on charging on. I have always been focused on the next achievement. It’s not taken me long to realise that tactic will not work for me here. Running on full steam will leave me having a flare-up frequently, which I simply cannot afford to be doing. It’s time to get my act together and learn the mysterious art of pacing…