It’s been so long since I’ve posted a blog, not because I’ve been too lazy or too busy, but because I’ve been too unwell. One of my New Year’s Resolutions is to be more upfront and unapologetic about the effects of having M.E. so please let me attempt to explain how my capacity unravelled over the last few months. I beg you to bear with the patchiness of my recollections – brain fog’s a bitch, but I’m still here underneath.
It was great to be moving again. We hit the road out of Milan playing ‘Name That Tune’ shuffling an 80s hits compilation Sampson had downloaded at Luca’s. Singing along to Katrina and the Waves’ Walking on Sunshine, I felt ridiculously happy.
Our original plan to visit northern Italy in August and move down the Adriatic coast in September would’ve been perfect for me climate-wise. Late in October it felt like we were pushing our luck. Mountains seemed to be bearing down on me, their snowy tops threatening.
Big Reg drove as quickly and directly as possible, while forking out for as few euro-munching tolls as we could wangle. Not easy.
But we had a couple of very lucky breaks. Firstly, we pulled off the road in Precenicco, and by chance parked overnight next to the Mariussi Mercedes Benz service garage. In the morning surfer/biker Luigi Mariussi came out to take a pic and Sampson ended up being given fiddly parts for the diesel tank he’d just spent a whole month looking for fruitlessly in Marseille.
Secondly, before we left Milan, at the point in the admin avalanche when (after making the AA vehicle deposit and paying for carnet, ferry and assorted flights) we thought we were just going to make it into Egypt by the skin of our financial teeth, we were told that the cost of getting Big Reg out of Alexandria port was going to be €920. It was non-negotiable and a real kick in the teeth. We were down to the wire so Sampson asked his brother Paul if he could assist by advancing us a month’s rent from their Mum’s old house.
He replied that, as he was sitting at his computer wondering how else he could help, news came through from the probate lawyers about the liquidisation of a long forgotten offshore investment of their Mum’s. It had been delayed due to a rejected photocopy of a document; when the shares were sold he reckoned the proceeds should come in at about £2000.
When I got his email I started crying. It was like a sign from heaven. Without Joy we’d never have survived this journey: even though she passed on just after we left in 2013, she’s provided us with the shelter of her house when we got derailed by Ebola in 2014, rental income to cover Ruby’s boarding fees so we could carry on in 2016 and now emergency cash to get Big Reg back over the sea to Africa. It was like she was prodding from the other side to make sure we made it over this bump in the road!
The bright side of the 6 week delay in France, was that this side of Europe was much emptier than it would have been in high summer. Zola was very relieved as he hates crowds, especially lily-white ones. He feels too conspicuous. We both couldn’t wait to get back to Africa.
Our son was in fullblown teenage transition. The most obvious sign was his sleeping: waking him up in the morning was becoming more and more difficult. It seemed incredible that just over a year ago he was leaping up at dawn to walk with me on the beaches of Morocco. He was changing so quickly, almost weekly, and I felt so glad I was right next to him witnessing it. His shoulders were suddenly twice the width of his waist – even he couldn’t believe it when we measured him! His face was rapidly losing its rounded boyishness; as his face lengthened, his jaw line was becoming as prominent as his stubbornness.
The Guilty Feminist podcast had overtaken Claire in the Community as his favourite thing to listen to while doing the washing up, which, in the absence of his sister, was now his sole responsibilty. I must say he handles the relentlessness of the chore better than she would have. He loses himself in his music, jamming on the keyboard or rapping along to downloads.
We drove across sunny Slovenia in 45 minutes. Autumnal colours of the falling leaves were reflected in the terracotta and Tuscan yellow houses. Here, where Italy meets the Dinaric Alps and warm Mediterranean colour meets Swiss order, they had the same cute shutters, but more chocolate box prettiness – ‘Heidi’ vibes were creeping in. It was fascinating to see the countries flow into each other.
I felt embarassed to be so ignorant about Eastern Europe. Until now, pouring over Papi’s maps, I had no idea Croatia calls itself Hrvatska, Montenegro is actually Crna Gora or Albania is known locally as Shqipëria, Land of the Eagles. I was also rather delighted to discover that Viola must have been shipwrecked somewhere along this coast, for “This is Illyria lady”. Finally we’d turned the corner and were heading due south towards Africa and proper sunshine with warmth in it – I was just praying we’d get there in time.
It had been an ambition of mine to visit Croatia since I met a wonderful Croatian girl in Prague in 1992. (She’s now a wonderful woman who lives in Scotland.) So despite the delay, I insisted we not put the Big Green Truck on a ferry from southern Italy to Egypt but stick to our original plan of driving 2000km along the Adriatic coast.
Croatia did not let me down. It was by far the most beautiful place we saw in Europe, with the bluest sky and the most spectacular lonely coastal road. Imagine driving from Camps Bay to Chapman’s Peak, but for three solid days, with ever more stunning views around every bend… it was like that.
The sea was clear as crystal and just as cold: Sampson went swimming at Sveti Juraj at 19˚ while I could barely stand the icy wind coming off the mountains on the islands of Krk and Rab opposite.
Our first morning in Croatia, Zola was still asleep and we were outside doing our exercises in Novi Vinodolski when a local smoking outside the café opposite came to greet us, in valiantly broken English. When he heard which continent we had crossed, he pulled a face and wondered if we weren’t frightened of “black people from the jungle with red things in their hair?” Seems some Croatians’ ignorance about Africans is on the same scale as mine about Eastern Europeans. #This Is Europe!
Olive orchards and vineyards stretched over the hillsides all the way down to the Adriatic. It was relatively underdeveloped, how I imagined the South of France looked like 50 years ago, and the light was glorious. If it was warmer, I would love to live here.
But my God it was cold.
When the temperature drops below 20˚C I experience dramatically negative effects on my health, as do many people with ME (pwME). Every degree lost equals a reduction in my capacity of about 10%. I’d been just about managing to function at 18˚C in Italy. But in Northern Croatia, with a biting wind blowing down off the Alps, when it dropped to 13˚C inside overnight, the cold became crippling.
After a good sleep (under two sleeping bags, wearing my sheepskin hoodie over my pyjamas) I might wake up relatively warm and manage to get outside for T’ai Chi only to realise I have zero energy. It’s like I’m failing to recharge overnight and my batteries are flat. So even though I’ve been in bed for 11 hours and asleep for maybe 8 or 9 of them, I’m still operating on the equivalent power of 3 or 4 hours’ sleep. Every day. And that’s a good night.
After a bad one, it takes me 2 hours to get up. I wake dizzy and completely disorientated as if I’ve just stepped off a fairground ride. I feel sick with nausea and my heart is racing like I’ve been running all night. I have arthritic pain in my joints and when I step out of bed, the soles of my feet feel like I’m walking on needles. I can’t speak because everything is too raw and I’m overwhelmed by sensory perceptions – light is brutal, any noise booms and the cold is a violent assault. I can’t be hugged because it hurts.
I drag myself up, start T’ai Chi, and slowly begin to feel a bit better as the movement gently thaws my body. When sun breaks through, the warm makes such a difference to my feeling of wellness, it feels like a blessing.
At 13˚C inside, it was 10˚C outside and 8˚C in the oil tanks – no wonder Big Reg was struggling as much as me. It was taking a lot longer than normal for the heat exchange plate to warm the waste veg oil enough for it to flow through the pipes like diesel. We were forced into extreme measures:
On day two we drove from Zadar to the posher end of the coast, south of Split. There was a marked return of “Massive Yachts” (in the accent of the Russian dealer in Cabin Pressure) we last saw in Cannes. I was very sorry to miss Diocletian’s Palace – but I was not strong enough to go and walk around the town.
At 4pm, I had to go and lie down in the back. My whole head was throbbing, my brain feeling bruised. I kept waiting to come round but somehow the Ibuprofen wasn’t working. Finally Sampson said “You’re feeling shaken-in-the-cab again” and I realised he was right: I was feeling as bad after 2 days on a good tar road as I did after 6 days in the tumble dryer on the Road to Foulamori in Guinea in 2015. It was a blow to realise how much weaker I’d got since then.
Utterly exhausted, I couldn’t go down 100 steps to the sea, but cooked supper at lunchtime then lay down to write.
It was Zola’s first day back to school in term 4 and for English that morning, he’d had to do an unprepared speech. I set the topic as “I’m looking forward to travelling down the East Coast of Africa because…” and he said, without hesitation, “My sister is coming.” GULP.
Waking up the next morning, I initially felt bit better but quickly realised that I was running on empty again; somehow all the energy had been knocked out of me as if I’d been winded with a baseball bat. So we stayed an extra day.
A few hours of unbroken sleep bolstered me into waking Zola with a blast of Anarchy in the UK on day 3. I was surprised to reflect on how tuneful and lyrically complex this classic from Never Mind the Bollocks was compared to modern toons – 3 verses! I am definitely getting old.
Back in dubious Maths territory, the brain fog common to pwME wasn’t helping me grapple to explain negative integers to Zola. I comforted myself that for him to see me battling to understand but persevering was a good lesson in itself.
I was hammering away at the satirical This Is Europe blog. When she was featured on Desert Island Discs, Sandi Toksvig described the process of editing as filleting a fish, delivering only the best to the reader. But for me, editing is more like sculpting: an infinitely delicate chipping away to achieve an ultimate smoothness that looks effortless. But the sudden yawning gaps in my brain were affecting my judgement, my capacity to make connections. Everything was too jagged.
We lay on the beach until it got too cold at 3.30pm. Ruby was pouring her heart out to me over WhatsApp: how she’d cried in Afrikaans class today because she felt so humiliated. She’d missed 31 months of Afrikaans lessons between 2013-2016, but her teacher was making her feel like she was stupid or lazy. The school could not allow her drop it and substitute French for Matric because Western Cape Education Dept rules state that exemption from Afrikaans can only be granted after 2 consecutive years out of the country.
We’d submitted an appeal late in 2016 (explaining that I would have taught Afrikaans if there was a textbook available in English) but despite dozens of chasing emails had not yet received a response from the WCED. I felt terrible about this unintended consequence of travel for our daughter; she was scoring above 70% in her other subjects, but her 20-30% in Afrikaans was bringing her average way down.
One of worst things about being a person with ME is the appalling insomina. Cruelly, the tireder we get, the less capable we are of recuperative sleep. That night, I got less than 2 hours. I don’t know how I managed to shower the next day, let alone teach. Zola was recalcitrant, mulishly resisting my efforts to illuminate the subtraction of negative integers. In end I confronted him: “Why this sulky overreaction to constructive criticism? This is not preprimary school, where encouragement comes before everything else. I need to correct you when you’re wrong, before you go miles off course.”
When I wondered if he thought that I thought he was stupid and thus so touchy – “that’s the negative voices in your head saying you’re stupid, not me” – the penny dropped. I saw realisation dawn in his face. I suspect he may have been telling himself he’s stupid since Grade 2 when his (old, white) teacher assumed all the Xhosa kids in her class were dim (rather than labouring under the burden of trying to learn maths in a second language). It took her till term 4 to realise he was “actually quite bright” – always the tone of surprise, grrrrrr.
Later, after supper, Zola said “I think I learned a good lesson today”. Bless him. He’s so gracious, especially compared to his sister at 13 – and she’d be the first to agree with me. He also did some brilliant conjugating of French reflexive verbs that his Dad certainly couldn’t do!
Beyond exhausted, I crashed out that night and managed to achieve a decent sleep. It was a joy to wake to less pain and the sound of sea washing against shingle. Zola and I walked uphill around the corner and were rewarded with the most turquoise and cobalt sea ever. It was a privilege to share the great peace of walking not talking with my boy. We turned back when we reached a village – he shrank from seeing strangers. At times like this, I sorely regret taking him away from the close friends he is comfortable with.
I was so thrilled to get these pics and will forever feel touched and grateful that he ran to do this for me without complaint.
We did afternoon school on the beach that day, after a picnic tray lunch of cheese, lettuce and grapes. Zola amused himself by teasing his Dad, tickling his feet, throwing pebbles and acting all innocent until caught out.
I captured these shots of him on the cusp between boy and man.
While Sampson sunbathed, Zola and I moved into a rocky corner to avoid the chill wind. He interrupted me as I started to warn him about danger of wedging a deckchair backwards on a shingley slope. You can imagine the painfully put-upon teenage tones:
“I know how to sit on a chair, Mom…”
Whilst I was typing up a script I’d scribbled down first thing this morning, he was reading out water facts from his Life Orientation lesson in a shocked voice:
“It takes 200L of water to make 1L of milk??”
His textbook predicted that Cape Town would be water stressed by 2012. No kidding. The day before we’d found out about the new level 4b water restrictions for our drought-stricken home city and I’d woken up with a fully formed idea in my head of a useful video we could make. (We filmed it when Ruby joined us – see it here.)
Half an hour later, the chair subsided – luckily sideways not backwards, so he just missed falling into the sea!
It was a wonderful day. I felt like I’d achieved a lot and would sleep well. But another ghastly night followed. I woke every hour and never got down deep enough to recovery level. Aching and sweating, I felt so unwell I couldn’t get comfortable and woke with my heart thumping, feeling like I couldn’t breathe. On nights like this, pwME wake up more exhausted than when they went to bed because it feels like they spent all night fighting to sleep.
That morning 14th Oct, I wrote in my diary:
“Seriously I wouldn’t be surprised if I had a heart attack any time from now, it doesn’t feel like it’s coping. I don’t feel scared, just relieved we set off travelling when we did. I’m enfeebling at such a rate of knots, it feels like it will be a miracle to make it home.”
* * *
Billy Connolly once said “There’s no such thing as bad weather, just the wrong clothes”. We’d only planned to be in Europe during summer, so had packed all our winter gear back into the attic at Noordhoek before we left Cape Town (thanks Eckleys) and couldn’t afford to spend euros on jerseys or coats that we would only need for a couple of months. The solution? Back in France, Sampson had delighted in digging around in recycling bins for second-hand clothes. “Fishing” he called it.
“Well,” he said, “it says here they’re meant for Africa; we’re just delivering more directly”. Shameless.
As soon as the cold hit, he took every opportunity to poke around trying to extract a jersey big enough for him and at last succeeded in snagging a spectacularly ugly padded gilet as well as these municipal worker trousers for Zola.
In Italy, a kind delivery man at IN’s supermarket left three bagfuls of labelled street wear outside the truck at 6am, which gave Zola a completely new winter wardrobe.
Best of all was when we pulled over outside an antiques market in Antibes. Amongst the artisanal coffee and heaps of bric-a-brac were piles of second-hand clothes of astonishing quality. There were rails and rails of pure wool and even fur coats. I snapped up a €2 pair of T’ai Chi troos and a much needed jersey for Hub for €3.
But the very first thing I saw was this patchwork quilt. I knew immediately it was exactly what Sampson was wanting for his bed. I had already commandeered Ruby’s extra sleeping bag as well as our one blanket and he was struggling with just one layer. I’d envisaged what he needed, something light enough not to weigh on his bad back and wide enough not to slip off with his constant tossing and turning. And there it was: perfect.
What is magical about patchwork is that each of the patterns sampled may be quite ugly in isolation: old curtains, ancient duvet covers, faded and unfashionable colours or prints. But it is the very act of recycling – searching out the best bits, placing them carefully in relation to each other and stitching them together so diligently – which makes them beautiful. Every morning when I lift and fold this blanket, I can feel the love in it, of the woman who worked the thousands upon thousands of tiny uneven stitches by hand, all those years ago.
This blog is the patchwork quilt I am slowly sewing for my children, to comfort and warm them in wintry times to come.