Press Pause

I am in a very dark place. And I don’t mean Britain in midwinter.

19^th January marked six months since we left Liberia. SIX MONTHS. If you remember, the kids and I originally flew out at 24 hours’ notice to surprise my folks for their 70^th birthdays, carrying just one bag between us, thinking we would be away from the truck for a couple of weeks. Unfortunately, as we left Monrovia, Ebola arrived.

On 19th, Zola started school at the wonderful St Newlyn East Learning Academy just down the road. Since Ruby had left on 6^th January, Zola had seen some real winter: watching through the window ‘rain-that-bounces’ (a.k.a. hail) which became ‘rain-that-scratches’ exposed cheeks when we were once caught short on our daily walk. The skies often looked like a spectacular watercolour, bruised blue-black washes of cloud signalling rain in the distance, the cold bright sunshine contrasting vivid green fields of cabbages against brittle hedgerows in the foreground. There were lots of rainbows.

How smart is this young feller in his new uniform?

Those first two weeks in January without Ruby, while waiting for Zola to start, we developed a gentle new routine. I had a new office – a table in the kitchen right next to the Rayburn – where I was attempting to work on a project with my brother. After lunch Zola and I would set off on the bracing 3 mile circuit out of the village and back again. It took half way to thaw the cold from my fingertips inside my gloves and get my metabolism going again after sitting still for a couple of hours, but it felt wonderful to get the blood pumping. My capacity seemed to be going down each time the central heating was put up a notch.

Back in July it was the hottest summer on record and, despite recent trysts with malaria and typhoid, I was feeling strong, eager to catch up with family and friends. By late Sept, as autumn set in, my health started to take strain. In the first two weeks of November my energy levels took such a dip, I stopped being able to go out in the evenings. In first two weeks of January they dipped again, and I stopped being able to go out on consecutive days. In week three I stopped being able to go out altogether. My life was being reclaimed by M.E.

On 22^nd Jan the WHO announced that the spread of Ebola was slowing. Although there had been nearly 9000 deaths so far, there were less than 150 new cases this week in Liberia, Sierra Leone and Guinea. In Liberia, there were just 8 cases, down from weekly peak of 500. The MSF cautioned against complacency, warning that the fight was not over, the pandemic could still flare up. But Sierra Leonean schools were planning to reopen in March after 8 months’ closure.

On that day, I noticed the first green shoots of daffodils poking through the hard ground outside my window. They were early.

On Friday 23^rd Jan, our friend Barbara came for supper. We had a right laugh, a lovely meal cooked by Sampson and some rowdy games of Yahtzee and Dobble with a surprisingly competitive Zola. The next day, I couldn’t get out of bed. I was shattered. The muscles in my arm felt like I’d been throwing a javelin not dice. I went downhill from there.

Somehow, somewhere, I crossed a line. Exercise, instead of making me feel better, started to make me feel a lot worse. This is the red flag for relapse for M.E. people. The terrible thing is that you never know for sure which day is going to be which.

I am needing more and more sleep to ward off pain. I am so groggy on waking, it takes me at least an hour to come round enough to get out of bed. I permanently feel like I just got off a fairground ride. With my leaden limbs it’s getting very hard to do T’ai Chi. Sometimes entering the conservatory with the temperature hovering around zero feels like a Herculean task, but I push myself through the hurt because it always makes me feel better, eventually. T’ai Chi allows the dizziness, nausea and poisoned feeling to abate somewhat, and eases the joint pain. It’s the only exercise that doesn’t result in fall-out.

But my morning routine of getting through four or five short forms and a shower now takes the whole morning. I’m finding it difficult to stand still for longer than half a minute. I clean my teeth sitting down. Showering requires a rest on the bed afterwards, sometime for the rest of the day. I weigh the benefits of crossing the house against energy consumed before leaving the room.

My current horizon

I have come to love the heart pattern the sun makes of the net curtain against the wall

The first thing I received on signing up with the Action for M.E. campaign following my reluctant GP’s diagnosis in 1993 was an awareness leaflet that began: “You have a hangover, you’ve just run a marathon and you’re going down with flu. How do you feel? Like someone with M.E.” This is why I never use the term ‘Chronic Fatigue Syndrome’ because ‘fatigue’ doesn’t come anywhere near the flat-out finished M.E. people feel all the time. Completely F***ed Syndrome would be more like it.

With spooky synchronicity, there’s been a lot of media coverage this week for the American Institute of Medicine’s decision to redefine and rename CFS. While tapping into the online debate about the merits of the proposed new moniker ‘SEID’ (systemic exertion intolerance disease), which currently I struggle to remember from one end of a sentence to the other, I came across a conversation that brought me to tears of recognition.

Discussing the historic ‘hangover + marathon + flu’ description of M.E., bedridden people were chipping in: “Add Alzheimer’s”; “Add arthritis”; “Add Hit by a truck and expertly beaten up”. One woman wrote “Add sometimes you’re amazed you wake at all”. I’d had all of those symptoms that week, the latter while struggling to breathe after a dream where I was being slowly crushed to death by the weight of a monstrous wardrobe that had rolled over on top of me.

So I think the universe is telling me it’s time to come fully out of the M.E. closet.

I am fighting fog, the internal kind, the kind that scares you when you come out of it, briefly, and realise with terror how long you’ve been under, how much time has passed, how little you’ve achieved, before sinking back into its folds. I struggle to speak, to spell, to get my words out, as my brain short-circuits, my thoughts constantly interrupted. Meaning is forever slipping away from me, retreating into the distance. I’m losing my grip on my ability to articulate; to be myself.

I’ve said it before and I’ll say it again: malaria plus typhoid was way easier to cope with.

On the 26^th Jan, we got good news from our Man in Monrovia: there were now only 5 active Ebola cases in the whole of Liberia. With that, the whole West Africa vs. UK risk to health ratio suddenly shifted. It was becoming increasingly apparent that it was becoming more dangerous for me to stay here than to go back there.

Although my M.E. is the worst it’s been for 20 years, I was a lot frailer than this in 1994/5. I am a still a long way from the stage of M.E. called ‘severe’: when pain descends like a smog; when you have to be helped to wash; when sound and light sensitivity confines you to a darkened room. But as the risk of Ebola lessens, the risk of me deteriorating from housebound to bedbound is growing.

At least this time I know what to do: rest. Rest. Rest. Hoard energy like a miser. Never stand when you can sit, never sit when you can lie down. Push only in T’ai Chi. Chow probiotics and Vitamin C. (I am eating nearly my own weight in naartjies.) Cut out everything unnecessary: visits, the weekly shop, telephone calls and, eventually, conversation. I comfort myself that this is happening to me, not my child.

* * *

On Sunday 1^st Feb Sampson took Zola up the A30 in search of snow. When he saw Bodmin Moor green and sunny, he thought he was going to have to drive on to Birmingham but then suddenly, over a rise, he glimpsed a field of bright white at the horizon, and realised he needed just a bit more altitude. He ‘put foot’ as we say in SA and headed further upcountry to Dartmoor.

He took a ‘jammy turnoff’, and 500m from the main road saw cars parked in snow on a side road. Three families were already frolicking in this winter wonderland. Sampson said to a random bloke “My son has never seen snow before, please could he have a go on your sledge?” Fellow Cornishman and environmentalist Howard Simpson most kindly replied “Help yourself, have it for as long as you like”. Of course Zola ended up standing on it like a skateboard… Check the live action footage here – I defy you not to laugh!

Dartmoor in February

How chuffed?

THANKS A MILLION to generous Howard and the Simpson family from Camelford.

Think the girls had been hard at work recreating Frozen…

The next day, Monday 2^nd, we had proper snowfall here at home in Cornwall! Although I felt almost sledgehammered by ‘systemic exertion intolerance’, I couldn’t help but marvel at the beauty of the fat flakes, floating down so slowly and resting on the ground. (This footage is just to make Ruby jealous.) On Tuesday I managed get out in the garden to take a couple of jewel-drop pictures in brilliant sunshine with frosted-over snow crackling underfoot. I breathed it all in, feeling blessed, knowing that – all being well – it would be my last chance to see it in this lifetime…

Proper snow

Wow, that’s one fat flake

Brrrrr

This was 3pm waiting for Zola to come home from school

He was delighted with the snow in his hair, changed out of his uniform and went straight back out for a snowball fight!

Next morning the sun made everything sparkle

and throw spectacular shadows

It’s not easy doing T’ai Chi with this many layers on!

Crunchy!

So beautiful –

watching the crystal drops fall

as it began to melt.

This grass is a lot hardier than I am

The gnome looked as rueful as I was feeling

But it was also the day I started filling in visa application forms.

Sometimes, inexplicably, you have a good day. You wake and become aware that you have risen above the fog: it’s cleared from your brain like the tablecloth of cloud that suddenly slides off Table Mountain. Your limbs feel freed from sludge, everything is light and back in focus and the words come tumbling out, fluid, easy, exact – oh the joy. I float between rooms. When you wake with unexpected energy you feel like a child with a windfall of pocket money: the excitement of choosing how to spend it is almost too much to bear!

But on the good days – of which I’ve had three in the month it has taken me to write this blog – I have resolutely had to rein in my euphoria, hold back, deny all natural impulses to run out into the sunshine jumping for joy, and bank that energy. I can’t afford to squander it. I’m going to need it for the journey.

We fly back to Liberia on 25^th February and I have booked a wheelchair for the connections: not because I need one now, but because if I don’t book one, I will need it by the other end. I’m planning a full week of ‘aggressive rest’ in preparation for three flights back to back. So family and friends in UK, I have to ‘love you and leave you’. Please don’t phone, I really need to save up my energy now. Rather come and visit us one day in SA where I shall be able to chat animatedly without crashing afterwards.

The daffodils keep coming, even through the snow. I want to warn them: don’t push, or the frost will kill you. Bide your time.

Stubborn daffs, ever optimistic about spring on the way

Thanks so much to Anneli Elasla at Royal Air Maroc and Shirshendu Sengupta at lastminute.com for being so patient and understanding about the constant delays and refunding Ruby’s ticket. Your kindness means such a lot to me.

* * *

I am lucky to have shared this mostly bedridden phase with my dear friend Barbs from Botswana, a.k.a. Babs from Gabs, who’s been in hospital in London over the same month. We’ve been entertaining each other online with collections of shorthand platitudes, and she has introduced me to the word ‘shonky’ which comes from combining shit + wonky and is very useful descriptor for all sorts of symptoms, not to mention haircuts. There was no internet when I first got sick in the early 90s, so chronic illness was a much lonelier place.

I have been greatly comforted by the solidarity and shared wisdom of M.E. support groups on Facebook and Twitter. I have been greatly moved by inspiring posts about creative people who are far more severely affected with M.E. than I ever have been.

Bestselling author Laura Hillenbrand wrote the meticulously researched books ‘Seabiscuit’ and ‘Unbroken’ – the latter recently made into an Oscar-nominated film by Angelina Jolie – over a decade where she rarely left the house. In between, she spent a year writing this seminal account of ‘A Sudden Illness’ that struck her down as a student in 1987.

Young director Jennifer Brea, former journalist and Harvard PhD candidate, is making a film to raise awareness about the reality of the disease called Canary in a Coal Mine that has been chosen for the Sundance Institute Documentary Film Program. She is one of the bravest people I’ve never met. It’s a work-in-progress but check the preview here.

The $200000 Jen raised on Kickstarter last year came mostly from the M.E. community, who are the only people who fully appreciate how important this film is to changing perceptions and how much it is costing her (and her husband) to get it made. As one supporter said “It’s an uprising from our beds!”

* * *

Yesterday, 16^th February, after many delays, schools in Liberia reopened after 7 months.

Today, it’s been a beautiful sunny day and I went Out: Sampson dropped me in Truro for 2 hours. I went to Boots and then sat down in the Library for half an hour. Apologies to Jennifer who didn’t know why I couldn’t spare her 5 minutes standing still to fill in her survey. Then I went to M&S to buy panties, a job I’m not yet prepared to relinquish to my husband. Best wishes to the lovely Joan, also originally from Coventry, who welcomed me to sit on her table in the appropriately named ‘Café Revive’ for another half an hour’s rest. We shall overcome.