Let me tell you a bit about my husband.
I spent a chunk of my early twenties confined to my bed or my house. Once I found my feet on the road to recovery I was eager to catch up on all those lost jolling years. Enter Sampson, party-starter-in-chief. And finisher. And mostly in charge of whipping it up in the middle.
Our first meeting in Cape Town in May 1996 was not auspicious. A mutual friend had invited me to a jazz gig at the Brass Bell and introduced us at the interval. “Mark’s also from England” he said, in the tone of “Hey, you’re from the same island, you’re bound to get on”.
My first impression was of an arrogant clown. Worse than that, I made no impression on him at all: Sampson doesn’t even remember the occasion. He was about to perform – he and his bestie Ampie Omo, soon to be a member of internationally renowned band Boo!, did a comedy busking act in between the Truly Fully Hey Shoo Wow band’s sets which mostly consisted of running round to the Pulp Fiction soundtrack after sniffing Grandpa Powders off a mirror, pretending to shoot people with bananas. While our mutual friend and I were wetting ourselves in the corner, it was going totally over the heads of the nice families having Sunday lunch at the Bell.
(Just to be clear: Marcus Wyatt, this is all your fault.)
The second time, a couple of weeks later, I bumped into Sampson and Ampie at the bar at the River Club and greeted him with a breezy “Oh, hello Mr Cornwall” because I couldn’t remember his name. On the dance floor half an hour later, he sidled up to me and said, “Why don’t you let yourself go a bit?”. I took a deep breath and said simply “I have M.E. and I’ve been mostly bedridden for the last 2 years; if I let myself go, I’ll pay for it”. He apologised immediately and said he had a bad back himself and knew exactly what I meant.
That was our first conversation. You think he’d have steered well clear.
But he pursued me relentlessly. And with a commitment and dedication, that, in retrospect, he has shown for little else other than waves. That night he and I sat in a circle with a teenaged guitar maestro, who came fully equipped with the ready rolled, and our verbal jousting began.
(So Albert Frost, you are also partially to blame.)
Ironically, ‘letting myself go’ on the dance floor was exactly what signified ‘me’ pre-M.E. Letting rip at Saturday night Chicago house jams in the sweaty basement of Coventry’s infamous Dog and Trumpet in ’86/87 to Sweet Tee, Eric B & Rakim, the Cookie Crew and Hamilton Bohannon remixes, was what got me through 6th form (thanks Johnny). Not being able to dance because of this illness was far crueller to me than not being able to drink.
I booked Sampson as a novelty act for my friend Barbs’ leaving party, but his car broke down on the way and he never made it (a lifelong pattern already developing). A couple of days later, he turned up at my house and invited himself round the neighbours’ with me to watch a dreadful Die Hard video. When he finally left that night, my Mom asked me what he was like.
“He never stops talking!” I exclaimed.
“At last!” she said “Now you know what it feels like…”
Our first proper date was at the end of June, when he invited me to go with him to Soundzone’s Bandslam at the 3 Arts. We chatted so long when he arrived to collect me, we missed the first couple of bands (sorry Nine), but I remember Sampson fire juggling onstage with Squeal, and Arno Carstens so nervous backstage before he went on, he threw up. The Springbok Nude Girls were just about to be huge, but this was their first time headlining a national tour, the beginning of the ‘South African music explosion’. We both remember that when Sampson took my hand to help me through the packed crowd to the front, it fitted perfectly.
(Debbie Bird: you’re also in the frame.)
Spontaneity – that’s what he symbolised for me then. For four years I had not been able to do anything without ruthlessly rationing energy for it. He was the complete antithesis of my enforced ‘careful careful, easy does it, consider all consequences before embarking’ lifestyle. Sampson was the epitome of living in the moment, and he made it seem easy. He didn’t dismiss my limitations; he just never let them stand in our way.
* * *
Big Reg set off east down the brand new six lane highway from Cairo to Ain Sukna, a place we discovered doesn’t really exist yet. There was no town, just an interminable bland coastline of apartment blocks under construction. Every so often we would stop outside a resort and Sampson would go in to ask for oil – but out of season guest numbers were so low, donations ranged between 20L and 2L.
It was the second week in December, a month since we had arrived in Egypt and the northern hemisphere winter was definitely nipping at our heels. The truck was battling with airleaks, I was battling the cold and constantly disturbed sleep as Monte had to be taken out so often to pee.
Roadblocks became more challenging with an increase in non-uniformed security police. After one taking nearly an hour to verify our truck licence, Big Reg pulled over at the Zafarana Food Court. When Sampson went in to ask for oil, he and the kids ended up getting treated to a free lunch. I knew there would be nothing safe for me to eat, plus I was too tired to talk, so I ate ricecakes in the truck.
The day before, to make way for Sampson’s stockpile of dog food, I’d taken the mini-Christmas tree out of food box, knowing we’d need it soon. Unbeknownst to me, Zola had tidied it away by wedging it in above his keyboard, which is kept inside a custom-made shelf above the table. I was still sat at the table working on my lap top when the Sampsons came back with 40L WVO, raving about the food and said we’d been invited to fill up with water round the back. As Big Reg pulled away, the tree base, a half kilo lump of plastic, slid out and fell directly on top of my head.
My scream surprised me, but was unheard above the noise of the engine. I immediately knew something stupidly terrible had happened. Speechless with pain and dread recognition of concussion again, I struggled to get back to the bed. I lay down dizzy with nausea and went cold, though not as badly as when I hit the back of my head in Cote d’Ivoire 3 years before.
After Sampson filled the water tanks, he was invited to use the washing machine – an offer not to be sniffed at – and to have supper as well. Zafarana was spoiling us.
I was too unwell to watch TV and fell asleep by 8pm, but at 8.20 the police phoned to check on us. This was such a brutal awakening I couldn’t get back to sleep. Then every time Monte got up and out to wee, it took me over an hour to drop back off. At 7am I was feeling like death and crying with pain. Overnight my neck and spine had stiffened because of the blow on the head. I still hadn’t recovered from the walk around the pyramids, and right now I couldn’t see how I was ever going to.
There was a freezing wind and it didn’t even get up to 20˚C inside today. I stayed on the bed in my T’ai Chi clothes the whole day while travelling, then all night because I was too cold and too feeling-like-I-had-a-giant-puppet-head to get undressed to shower. It was very grim. I was worried I wouldn’t get over it by Christmas and that this silly accident would ruin Ruby’s holiday. She cooked tonight, a meal from tins because there was nothing fresh left. We always sit together at the table for meals, but tonight I could not get up to eat – I felt too sick upright, and had to lie back down.
This was the day I drafted an invite to the virtual screening of Unrest, Jen Brea’s film about living with ME. It was my ‘coming out’ of sorts. High time.
The police insisted on giving us an escort from Zafarana to Hurgarda. I delivered tea and halva to our overnight guards. A second escort car took over when we crossed into the Red Sea province. Sleep saved me. As the inflammation gradually came down, I felt better. And the further we travelled south, the warmer it got. I know I’m going to be OK when the socks come off.
* * *
Just before dawn on 12th Dec I was listening to a Woman’s Hour podcast to try and sooth myself back to sleep, a ploy that failed dismally because Nimco Ali, a Somali-British campaigner against Female Genital Mutilation (FGM) was chatting about her achievement in persuading the President of Somaliland to begin the process of banning the traditional practice of ‘cutting’ little girls. I knew that this had been a long battle in the Horn of Africa, but I was horrified to hear her talk about the stats in Egypt, a country where I had assumed women’s rights were far more advanced.
Wikipedia stated that FGM is much more common than I thought, assaulting 200 million women worldwide. It is carried out in 27 African countries, from Somalia to Senegal and from Egypt to Tanzania, blighting the lives of 98% of women in Somalia and 91% of women in Egypt. That’s more than 27 million women presently aged between 15-49, who were cut sometime between the ages of 5 and 14.
I felt sick.
Why isn’t this a global priority? Because it only affects girls. If it was millions of little boys’ bits being grabbed and razored off in the name of hygiene, there would be one helluva hue and cry. I’m under no illusions about the hegemony of the patriarchy and well aware we are currently living in a warped version of The Handmaid’s Tale but I still felt a complete idiot for being unaware of the scale of FGM for so long and was ashamed of my ignorance.
(Later, during March 2018, Reuters reported the difficulty the Egyptian state was having with implementing a 2008 ban on FGM, despite it being criminalised in 2016 following the death of a 12 year old girl in 2007. In May 2018, Egypt Today reported that FGM had been religiously forbidden in Islam. In July 2018 Somalia’s attorney general annoucned first ever prosecution for FGM after a 10 year old girl bled to death.)
The good news is that African women activists are leading the charge against this heinous practice. Since Dr Edna Aden from Somaliland reframed it as a human rights issue to the UN 40 years ago, today young women such as Jaha Mapenzi in The Gambia and Josephine Kulela and Agnes Pareiyo in Kenya, are making huge strides towards complete eradication.
When I climbed into his bed to tell him about it, Sampson was so appalled he said maybe we should drop the climate change focus and make it FGM.
That’s why I love him folks.
* * *
There are more than 300 hotels in Hurghada and we spent several days trawling the strip asking for oil at the Desert Rose, the Sea Star Beau Rivage, the Seagull, the Sunny Days, the Sphinx…
Although we were graciously received by many, we were surprised that, despite enthusiasm for our cause, there was a distinct lack of managers putting their oil where their mouth was. Finally a bloke in a smoky office closed his door and spilled the beans: no hotel here in Hurghada could give us their waste oil due to a contract with the Red Sea government to dispose of it via HEPCA – an environmental protection NGO.
This was great news! I googled HEPCA, was bowled over by their mission statement and phoned immediately to make an appointment for the following week.
We headed out of town for the weekend towards the famed fancy suburb of El Gouna, hoping to find a quiet spot next to the sea. Big Reg took a promising right hand turn through a landscape of half finished buildings and ended up outside a kitesurf station run by an instantly friendly Russian dude called Alex who said we could park off by his house.
I was too ill to meet with Alex’s wife Anastacia on our first day there 16th Dec. I managed to stand up just long enough that morning to cook the evening meal, then was flat out for the rest of the day.
Ruby was doing DIY karaoke and made Dad sing along to Queen. When she sang Adele’s When We Were Young it was so beautiful, she nearly made me cry. But Sampson had disappeared into his headphones, his only focus on lying down easing his back while watching TV. She pointed out that he wasn’t interested in her singing or me attempting Fiona Apple and he became blustery and defensive. I couldn’t handle it, took some more Ibruprofen for the ongoing throbbing sick pain in my head and lay down.
A few minutes later, she calmly and quietly took him apart. It was so sublime I wish I’d recorded it. My 16 year old daughter said stuff I always say but with added things I daren’t claim. How he never notices. How I always put myself out for them and he never does. How I’m much iller than I was and only going to get worse, so he needs to wake up and take over some of the stuff he’s always left to me. How a little bit of kindness would go such a long way right now.
I was sobbing at her insights and her wisdom and humbled by her nailing of us both – I didn’t escape criticism (just didn’t take notes on it!). Ruby told us both off good and proper, said she’d never forgive us if we give up and divorce, warning that she won’t come visit!
She made me go to bed at 8pm which was a good call, except then I woke at 1am and wept at the thought of her leaving – I needed her support so much, but was biting my lip not to burden her with that.
On the second day I went in for tea with Anastacia and Ruby and was given a warming cup of cinnamon rooibos in Xmas mugs! YUM!! Nastya let us do three washes in her machine, thank god, which saved me weeks of exhaustion. She’s delightful, Ruby adored her and the feeling seemed quite mutual. This was the first time I started feeling Christmassy thanks to their efforts.
Fourteen years ago Anastacia came to Egypt on holiday and met Alex, who was a watersports rep in her hotel. Now he has his own kitesurf business and loyal customers who come back year after year to play in the guaranteed wind of Hurghada’s Red Sea coast. Petite Nastya is an awesome mum to their four children: Christiaan 13, Leo 10 and the twins Lisa and Pieter 5:
I said mothers of twins should wear a badge so other mothers can recognise them and genuflect to show proper awe and respect. She laughed and you’d never guess by that delightful trilling sound what it costs her to be so gentle and giving to everyone around her 24/7. Ruby was in heaven in her kitchen and spent the weekend baking riceflour lemon cake for me and meringues with the kids. I was so grateful she was having some fun.
The following week we left to visit HEPCA’s swish office suite at Hurghada’s superb marina.
Managing director Heba Shawky was a dynamic executive who looked to be in her late 30s and seemed to be living on cigarettes and coffee. (Sampson respectfully asked her to stop smoking after the first fag, which was very kind of him because I was too intimidated to admit that the fumes were about to finish me off.)
HEPCA the Hurghada Environmental Protection and Conservation Association was founded in 1992, by 12 local business owners who were passionate about diving but concerned how careless anchor practices were threatening to destroy their spectacular coral reefs. The non-profit initially installed 50 eco-friendly mooring buoys. Now they carry out 10300 private installations every year, all over the Gulf and the Red Sea.
Ms Heba has been at HEPCA 12 years. She started in marketing but following her belief that “Passion is the thing”, became a self-taught marine biologist who loves dolphins and turtles. She’s the kind of woman who Gets Things Done – before she’d finished her second cigarette on the balcony, she’d sorted us out a waste oil donation from the Marriott. Heba Shawky is what I imagine a modern day Huda Sha’arawi would be like.
We were very grateful that she made time to see us during a hectic week, in between consultations with her scientific advisor, Dr Mahmoud Hanafy, Professor of Marine Biology of Suez Canal University, and launching a new app for reporting infringers of Red Sea rules. Over the last quarter century, HEPCA has successfully worked to establish awareness of their violation. The next step, Heba says, is to implement enforcement.
HEPCA’s full staff numbers 600 with 12 in the Hurghada office and 120 in Marsa Alam. They have a huge fleet of trucks to collect, recycle and sell solid waste – by which means they soon aim to be independent of European funding. She says she’s become so obsessed with this target, she visits solid waste sites even while on holiday! (She was proud to tell me that Egypt had the first sewage system when renaissance Europe was still “drowning in their own shit”!)
The beloved founder of HEPCA, Amr Ali, died of a heart attack aged 45. Heba had been his deputy for 7 years and said they were “like brother and sister”. The Red Sea Defender boat was rechristened the ‘Amr Ali’ in his honour. At the Port Ghalib beach resort, they have a wet lab which hosts schools tours and university research. They even offer Masters scholarships. Heba says they “work like a company, but with the spirit of an NGO”.
Heba says her main effort now is presenting economic evidence to back up the enviromental case – not focusing on ‘how good it is to preserve sharks’ but on how protecting the coral is best for Red Sea tourism figures: “The ocean is free and our most valuable possession.” She was interested in finding out whether or not their Bioboat, used for educational outings with school children, could run on WVO?
In a second fascinating conversation alone with Heba, she gave me a potted history of modern Egypt. She described the ‘elegance’ of the Egyptian people before the ‘coup’ of 1952 (she didn’t call it revolution) that deposed the monarchy and marked the end of British dominance of the Egyptian state.
When the military took over, everything went down, she said. The Muslim Brotherhood was very naïve, the big boys of the military manipulated the banks and engineered monopolies in all sectors: agriculture, industry and business.
“Don’t get me wrong” she said “I love my army” – but in their proper role of defender, “not making pasta and baby milks”. Mubarak became a tycoon and stole billions. All money and authority was in the hands of ten oligarch families who monopolised industry: hotels, trucks… “We got nothing for our taxes, there was no investment in education or health, and as prices increased, the middle class were being crushed, like all over the world”. Heba thinks even the traffic in Cairo was designed intentionally to “keep them busy, keep them down”.
“Is it better now, since the revolution?” I asked.
“We don’t know,” she replied, “But we are most worried.”
Manners and ethics have changed post-2011. “Our language is different, more vulgar… we are not tolerant of each other as before. We are frustrated because what’s happening in the Middle East was predicted, like Trump in The Simpsons!” She bemoaned the increasing gulf between the haves and the have-nots: “We have kids taking Chanel bags to school and kids living on dumps eating garbage. But whatever happens, we mustn’t give up – we must never lose hope.”
When I asked her about being a woman in management, she denied that there were any barriers to promotion; at least in Northern Egypt, she insisted, women were at high levels in banking, media, marketing and the private sector. On her appointment, she warned the Governor: “Treat me as a man or I will act as a woman”.
We spent a couple of nights at the marina, and all the things to see made up for the particularly pesky mossies. Ruby was playing us all her new music, and it was so great to have this injection of modernity! (This is how Zola got obsessed with Despacito and learning Spanish…)
Ruby was feeling down in the pre-menstrual dumps, so I pushed myself to take her Xmas shopping along the Sheraton road outside the Marina, trawling through all the tourist shops. She spent a long time choosing matching bracelets for herself and two school friends. Several shop-keepers laughed in our faces when we said we were South African: “But you’re white!” Ruby got quite offended. Here in north Africa there seemed to be far less awareness of South African history than on the west coast; sub-Saharan Africa is assumed to be 100%black.
There were some very smarmy operators, but in ‘World of Sweets’, we loved softly-spoken shop assistant Tariq as much as the gorgeous pistachio creations. He was a Syrian refugee and had only been there 15 days. He told us he was qualified in IT but sacked from a job in Cairo because he was not Sunni Muslim. He said it was proving increasingly hard for him and his brother as they attempted the trek to safety:
“In Sudan they black but heart is white; in Egypt the skin is white, but the heart is black”.
Tariq seemed scared verging on paranoid, warned me not to give him our web address because we were on camera, and rather passed his details to me screwed up in a tiny scrap of paper while shaking hands.
I didn’t blame him, I was feeling a bit paranoid myself. Today was the second time Mom had a recording of her own voice played back to her after speaking to me on the phone. Whether this was a warning or an example of incompetent surveillance we couldn’t tell – neither was reassuring.
This was the week of the ANC conference when Cyril Ramaphosa beat Nkosazana Dlamini-Zuma to the leadership. This was also the week we watched Sense8 with Xmas treats: pomegranates for me and homemade halva-sauce for Sampson’s popcorn. Having been drawn to pomegranates in Greece, it was only now I found out that they are anti-inflammatory. They certainly give me a boost (as hibiscus/bissap tea or coconut water does) but they were proving increasingly exhausting to eat. My kind husband began patiently decanting seeds for me every night so I didn’t have to pick out each one individually, holding up my arm for unsustainable amounts of time. It took me a whole evening to eat half a pomegranate’s worth of scarlet gems. But I slept so much better afterwards with the pain in my brain stem slightly eased.
I was determined to go with kids on a glass-bottomed boat trip, but the day we’d booked it, I felt so ghastly first thing, I didn’t think I would make it. By mid-morning, I’d rallied enough to risk it and luckily guessed the right clothes to cope with the aircon. We boarded with lots of Chinese, Russian and German tourists and went straight downstairs to check the glass-lined third deck below the water line.
That was more than enough excitement for one day but the Arabia Azur Resort was expecting us to come and collect oil. On arrival, GM Maher About Elnour swept down and invited us in to eat – I stayed behind because I was exhausted and had to rest in preparation for the truck being open for visitors as he had advertised at 3pm.
The Green Star green capacity-building programme that Amira from the Marriott told us about is a laudable initiative of the Egyptian Ministry of Tourism implemented by the Egyptian Hotel Association which offers an opportunity for hotels in Egypt to be internationally recognised for raising their environmental performance while reducing operational costs.
The Marriott was aiming to increase its number of green stars from 3 to 5 over 2 years by replacing all lights with LEDs, installing lower water pressure valves in all bathrooms and converting all kitchens to natural gas. This had been further spurred by an 170% rise in the price of electricity in a single year!
We urge you to support Green Star Hotels such as the Marriott and help pave the way to responsible tourism in Egypt.
The main whack of PEM from the Happy Dolphin/Arabia Azur activities hit me two days later, after Italian Marta Gambarin at the Blue Moon Vet had given Lucky the chop, and both pets their necessary vaccination cocktail.
The suffering was random and relentless. I’d wake up in deep pain because I’d fallen asleep on top of my blanket and my muscles got cold. Or I’d fall asleep in my sleeping bag and wake up with my nightclothes drenched in sweat because it was so hot and humid. Sometimes, I felt I couldn’t breathe despite the hatch and the sidedoor being thrown open.
I got up on the second day feeling so wobbly and so grim, thinking about Anastacia and whether I should phone when there was a knock on the door – and there she was! She’d caught sight of the truck by the Marriott on her way back from dropping the kids at school and came to see how we were. She was so genuinely delighted when I asked if we could come back – I felt the universe was blessing me with a kind friend when I was desperately in need of one.
* * *
Relapse for #pwME is like the slow motion plummeting off a cliff in a cartoon – no matter how much you flail, you’re going down. When you’ve overdone it and gone too far, no amount of Wile E. Coyote arm-flapping or back-peddling is going to save you from the crash. There is just the horror of the disappearing long drawn out scream…
* * *
Dec 22nd was the first day when T’ai Chi didn’t make me feel better. One short form proved too much, I had to come in and lie down. By 4.30pm I was still not showered. Brain fog had descended like the blanket over Table Mountain, swathing my senses in a shroud too heavy to shrug off.
We went back to the Russians’ to do oil filtering. Ruby had come down and slept on the floor under a net because she was being eaten alive by mossies up in the nose cone, so Sampson took to sleeping in the tent despite single digit temperatures. As a result I was no longer being disturbed by Monte, but by now it was too late and things had deteriorated too far – even better sleep wasn’t helping me pull back. I was still dizzy, still couldn’t stand up, my arms were still useless from holding the camera for an hour on the Happy Dolphin. While the Sampsons went off to the station for Zola’s first kitesurf lesson, I just managed to put another wash into Nastya’s machine, then it was back on the bed for the rest of the day.
I wasn’t up to writing or clearing the 1000 emails clogging my inbox. I was struggling to read. Reviewing the notes I always keep in the front of my diary, I was shocked to realise how few books I had got through this year (six, with The Power by Naomi Alderman, a gift from my best friend my fave) and to realise that, even with menopause kicking in, I had probably had more periods than sex. Bloody hell! It was dawning on me that I must be disabled – both facts are so uncharacteristic of me…
Zola came back in such a good mood, he volunteered to cook dahl while inside Ruby was making cupcakes with the kids. After finally managing a shower, I gathered myself to visit Anastacia inside for half an hour, to look round their lovely house full of Xmas decorations and mountains of LEGO!
(Looking at lovely little Lisa, the thought of deliberately ‘cutting’ millions of girls as young as her, condemning them to a life without sexual pleasure and with constant pain from infection and tearing seemed beyond cruel, almost beyond contemplation.)
On Christmas Eve, I was woken by Zola tumbling down from upstairs to land on his knees next to me and vomit into the loo. Sampson appeared to be suffering the same plus diarrhoea, but Ruby was fine. I was feeling nauseous but that’s normal for me, so I thought I too had escaped the bug. I ate a banana, and left a clammy Zola cosied up in my bed nearer the toilet. Ruby rolled her eyes at me as Sampson lay groaning on his. Us girls went inside for a holiday salon session: I cut her hair to a bob and she helped me shave the back of my neck and trim the rest before my arms gave out.
While Nastya took Ruby food shopping, I wrapped colourful scarves around random things I’d squirrelled away for pressies. My complete Xmas prep took all of 10 minutes. GOD HOW I LOVE STRESS-FREE TRUCK CHRISTMASSES! I know lots of people adore the anticipation and the build-up to the big day but for pwME it’s just another exhaustion-creating burden. I managed a shower to get rid of hair clippings, then slumped. I fell asleep on the bed waiting for supper.
Our 2017 Xmas day presents were mostly bought on the Sheraton road: a pack of Egyptian playing cards for Zola, a cotton dress for me, a kilo of chocolate toffee eclairs for Dad. Ruby got Italian biscuits and second hand Milanese fashions from Luca’s house. She went in to start preparations for the meal with Nastya, who chatted to her about how, because her Dad was Costa Rican, her dark hair and olive skin made her a target for bullies at school in Russia who called her ‘n*gger’.
I rested the whole day trying to save enough energy to be able to join them for the evening meal. While Ruby was cooking and baking, Zola had his second kitesurf lesson – he got up on a board this time. If you want to learn, get yourself to Playkite in Hurghada!
Alex was brought up in the forests of the Siberian Urals, and has that hardy, almost-indestructible vitality of James Bond – as well as the charisma. He is passionate about his sport and an inspirational leader of an international kitesurfing community at Hurghada. He must have been bemused by my constant disappearances but was far too much of a gentleman to comment.
Alex didn’t lift a finger to help with the meal – but then neither did I. He was telling me that so many Russian men died in twentieth century wars, there are now 3 million more females than males. In Egypt the gender gap is the other way round, perhaps due to selective pregnancies. As a result, many Russian women come to Egypt to find husbands. Apparently, there are thousands of Russian wives in Hurghada alone.
However, Alex was also telling me that Russian tourism to Egypt collapsed overnight following the alleged bombing of Metrojet flight 9268 from Sharm el-Sheik in 2015. His kitesurf business only just survived the banning of direct flights to Red Sea resorts by the Russian government, which have yet to resume.
We were late to eat the roast chicken, Sampson’s ‘Jamie’ potatoes and roast carrot and peppers mix prepared by Ruby. As is traditional, Zola carried on long after everyone else had finished, methodically stripping both carcasses to the bone. Sitting on a hard chair under lights that felt way too bright, I kept having attacks of sweats as my body struggled to cope with being upright for so long. But the family were so sweet and the occasion so lovely, I didn’t want to spoil it by bowing out early.
After the meal, Alex got out his Cajon box drum, harmonica and guitar to entertain us, even attaching shakers to his toes. I longed to join in, to dance and celebrate, but my whole body was shouting in pain at me.
After supper, Zola begged me to turn his dreads into a funky Mohican – we got 2/3 of the way through before I had to abandon the attempt as my arms were hurting too much to hold up the electric shaver.
We got to bed at 10pm. I knew I’d overdone it but I was still shocked at how bad the fall-out was on Boxing Day. T’ai Chi was really really tough to get through, but I managed it with rests in between each form and it worked a bit to ease the extreme pain and nausea. Sulphuric burps showed me I hadn’t escaped the boys’ gastro bug after all, I just hadn’t realised I had it because feeling that ill first thing in the morning was now standard for me.
Once again, I had to give up on the whole day and lie down. I managed to write a bit to take my mind off the pain. I couldn’t stand up to shower so spent all day in T’ai Chi clothes, and slept in them too. I had fever in the night, but on the third waking knew I was over it when the bed finally became comfortable. Ruby had fed me crackerbread so I could take Ibuprofen; pain that bad was worth the resultant pressure on my stomach.
Liquid digestive probiotic saved me from the effects of the bug dragging on too long. I can’t thank Probio enough for sponsoring enough bottles for the trip, though it seems the company have gone under since we left. Meanwhile Sampson was filtering oil, Ruby was taking Monte for a walk and Zola showed he was fully recovered by eating 14 cupcakes…
When I was feeling a little bit stronger, I went to talk to my husband, wanting to be honest about the distance growing between us. I didn’t want to make the mistake again of assuming my most loved ones understand my situation and thus interpret their actions as cruel when in fact they are just oblivious – I thought I need to spell it out before we are broken too. I wanted it to be positive sharing, but he got so defensive I ended up crying. When you can’t hang on to a train of thought long enough to express it, it’s difficult to resolve anything.
I even contemplated going home with Ruby for a few dog-free months during Cape Town summer to recover my strength. But who would teach Zola then?
I longed for a shower but chose instead to put on jeans and walk 200m to the sea. It had been eluding me for nearly a week. As Sampson and Zola took Monte for another bike run to tire him out, Ruby arrived back sporting a present from Anastacia: a turquoise manicure sprinkled with silver Xmas trees – I was so grateful to Nastya for spoiling her in this way, but also so sad I couldn’t go out and treat her myself. I was terrified how Ruby’s time with us was slipping away but felt way too foggy to plan how to make the most of it.
I had descended into insomnia purgatory: the pattern of spending a gruelling 12 hours in bed to get 7-8 hours sleep had become standard. I had taken to rolling gently on the old cinnamon pot again to relieve the intense pain at the nape of my neck: it was a like a very focussed massage on the two throbbing points at the top of my spine.
During a day of collecting oil from Palm Beach and AMC hotels, Ruby was helping me back to bed after lunch when I fainted and she caught me. Lying down afterwards I was wondering what on earth I could do to rescue this rubbish holiday vibe for my kids when a lovely Geordie family came to the door. They were so admiring and envious of our Adventure, they reminded me just how special what we have is: I don’t need to Do more, just Be. Thanks for cheering me Debbie and Colin.
That night I took painkillers and went to bed at 10.30, but was woken by Monte before 12. Explosion of pain.
pwME should never be woken from deeply needed sleep. It’s a violent assault. All senses shoot to overload. Every sound was magnified – poo bags rustling, pill bottles rattling, Sampson’s belt on his jeans jangling as he pulled his legs in. I could have maybe got back to sleep after the getting out, but it was impossible after the getting back in with scampering dog.
It’s horrific to know your day is already over when it’s only midnight. My guts were churning from recently swallowed Ibuprofen, the initial discomfort I usually sleep through. Worse was my heart: every time I woke, my body sprang to full fight-or-flight response, flooded with cortisol, adrenaline pumping. This was happening 4 or 5 times every night. My body was as exhausted as if I was running from wolves every time.
No wonder I wrote “This is killing me”.
My diary for this time is patchy but there was this:
“I have never been – have never put myself – in such a dangerous situation. In all these years, whenever my parents or my husband accused me of overdoing it at work, I have never pushed myself past my limits like this. I am now frightened I may never pull back from this state… If I did a drop faint yesterday, will I now start passing out regularly, like severe M.E. patients? Blue lips et al? There’s no ambulance service in Sudan. I need to start recovery NOW not push it another 3 months till Monte’s trained.
This is not a me vs dog decision: it is about the survival of the family. If I am not on my feet, who is going to do borders? Face off police? I am a better guard dog than Monte will ever be. If this pain was happening to one of the kids, there would be no question of keeping this puppy. Why isn’t my husband looking out for me? Or seeing it in those terms? Choosing this pain for me. Denying me the capacity to walk. Muscle tone could take a year to get back. If I’m lucky.”
The only entry for the following day says:
That’s POTS vertigo too disabling to function at all.
* * *
I was so frustrated because I had so wanted to be up to date with the blog by the end of 2017 but had been less and less able to write since winter got me by the throat and brought me down in Croatia.
But then I read a blog by severe M.E. sufferer Anil van der Zee, a former ballet dancer in the Netherlands, confined to bed for the previous 5 years, who had a ‘better’ year in 2017 because he saw 4 visitors (on consecutive occasions) in the entire year.
That’s 3 more than he did in 2016.
I don’t have many heroes, but Anil is one of them. His grace, his humour, his spunk defies it all. Please take the time to read his account of having someone come into his home to administer a saline IV. It might help put your life in perspective too.
Anil made me feel better about my year. It was now taking me 2 hours to come round and get up and I might have lost my capacity to walk in the mornings. But I could live with that if we were still moving, and I was still watching out of the window.
On my worst day that December, in the middle of the hour necessary just to take down my net and make my bed, I was looking at the golden light streaming through the window and remembered that, in early 1995, if you’d told me I would one day walk again, dance again and go travelling around Africa in a truck with my family, I would have been so f*cking thrilled I would have cried tears of joy. I resolved to hang on to that memory. Hang on tight till the next beam of light.
I feel your pain. Thank you for sharing so honestly the daily struggle. And you really nailed it with the realisation that we don’t need to do more, we are enough. I love you and wish you well.
Dear Sam, Just found your post in my junk mail and have read. I hope you are getting stronger – I do love your posts and your families adventures. Take care of yourself – so sorry that you are struggling so! x Rachel
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