After the week before last’s withdrawal-addled rant, I feel I should offer you some positivity. It’s not coming straight away but hang on in there…
Last weekend, my mother took a rare and well-earned break to visit her friends in Sweden for a Midsummer get-together. Midsummer is a big deal in Sweden. People go to their lakeside summerhouses and spend a weekend eating gravadlax, drinking schnapps and singing jolly songs. At least, that’s what I understand.
So I was in charge of running my own home for once, something I am woefully unused to but actually fairly capable of doing when I have the physical energy. I was also in sole charge of my daughter, which was absolutely lovely as we don’t actually spend much time alone together. It so happened that last weekend was my daughter’s Beaver Camp (you know, as in the Scouts’ Association. They didn’t have to catch fish and build a dam). Having been issued with an extensive list of necessary equipment for camp, I spent Friday night and Saturday morning assembling all the gear and packing it into my big rucksack and my daughter’s little rucksack as an overflow until it looked as though our whole family was off to a festival for three days.
Camp day was a bright, scorching day and, I decided, the perfect opportunity for my father and I to take as much of the garden rubbish (and it’s a very big garden) as possible to the dump. At least I retained enough common sense not to lift anything (thanks, Dad) but it was still quite tiring. Then it was time to go to camp – the journey there a hot, sticky drive throughout which my daughter insisted on wearing her fleece-lined regulation sweatshirt: “We have to arrive in FULL UNIFORM,” she announced, her face the colour of a tomato, as I tried to reassure her that she wouldn’t get into trouble for not getting heatstroke.
Finding camp was a little tricky owing to some confusing directions and instructions telling parents to drop their child at the end of a lane where they would be met by camp supervisors. No one was there.
“I’m not just leaving you here!” I said to my daughter, aghast at the thought of abandoning her at the side of the road with luggage as tall as her. “Neither are we just standing here like lemons. Come on!”
I strapped the giant rucksack to my back, gave her the little one and we set off down what I guessed to be the correct lane. It wasn’t. Luckily, a helpful man pointed us in the right direction and I saw my daughter safely to her tent.
Now, the dump run and rucksack lugging turned out to be a bit too much, physically, for me. I spent the next few days lying down as much as possible and was forced to cancel a morning’s work midweek due to my usual ME crash alarms going off (word-finding difficulties, clumsiness, useless heavy legs). And I started to do my usual routine of berating myself for overdoing it.
Then I stopped being angry with myself. Let’s just take a look at all the good bits. I spent some lovely time with my daughter and did some proper mum stuff to boot. My goodness, I even cooked a meal. And the weather was fabulous, we had a drive into some of Britain’s most beautiful countryside (even if I am biased) and didn’t it feel good to be outside? Even though I’m not at all sporty, I love being outdoors and walking. No, walking up an incline with a heavy rucksack on your back is not a good idea when you are recovering from an ME relapse (of course, in the midst of a relapse, you wouldn’t have the strength to do this). But the very fact that I could manage this is a sign of how much I’ve improved over the last six months.
That’s not to say I haven’t been outside for six months. As soon as I started to feel a bit better a few months ago, I made sure that every day, I took a gentle walk to the local shop and back, which takes all of five minutes. But when you have been mostly housebound for a long time, you really do miss having the freedom to go places, to walk and explore. A great deal of rest, tiny bits of regular walking and daily mindfulness have contributed towards my slow improvement. So rather than get cross with myself, I decided to congratulate myself on taking steps to manage life with this illness and succeeding.
This sentiment leads me to steer you towards this uplifting article by Colette Bernhardt, whom I met via my friend Pete. We share the unfortunate connection of chronic illness but the fortunate connection of enjoying creating and writing, which is a lot nicer.
Colette describes how careful, supervised pacing has helped her towards recovery and how it has allowed her to return to enjoying walks in the countryside. As I’ve said before, it’s different strokes for different folks when it comes to getting through ME. However, it is my belief that pacing is key. If you haven’t already seen Colette’s piece on the HuffPost blog, do read it.
Coming up on Spooncast, a guest post from Pete and some of my crazy money-saving ideas.