As outlined in this post and this post I’m trying to write a book about my experience with severe M.E., sharing with you little excerpts along the way. It’s painfully slow going as the mental energy and concentration needed to write a novel is beyond me most days, but I keep plugging away one sentence at a time. I’m determined to finish it!
In this snippet, I’m on holiday in Kenya with my boyfriend John. His nickname for me was “Bim” – he never called me by my name. I’d had M.E. for over a year by this stage, but it was mild/moderate. All that was to change on this trip.
“Our 5 star hotel is stunning and fringes the edge of a white palm tree lined beach, albeit patrolled by guards armed with loaded machine guns. We spend the first few days being quintessentially English, frying our pasty skin in the searing midday sun and bribing the pool staff to reserve our favourite sunbeds even though there’s not a German-lounger-thief in sight. We wake on day four and, after a breakfast of fresh tropical fruit, camp under the shade of a coconut tree and start on a game of Cribbage. My lower back is aching. I was born with a narrowed spinal canal and had surgery to correct it when I was a teenager but it’s given me gyp ever since. I fold up my beach towel and rest against it, trying to take the pressure off.
Mosi, the waiter, arrives with two ice cold lemonades, the corners of his dazzling smile almost meeting his twinkling brown eyes. He’s taken a shine to John, telling him he has beautiful karma, and we’re being treated like a couple of VIPs.
‘Morning John’ Mosi beams, ‘morning ma’am’. He’s not the slightest bit interested in me, my karma’s obviously still in need of work.
‘Morning my friend’ John replies, ‘how are you?’
‘Wonderful John, just wonderful’. Mosi is always wonderful and his enthusiasm for life is infectious. ‘What are your plans for today?’
‘Oh, we’re just staying by the pool. Off on safari on Friday so we won’t see you for a few days’. We’ve booked to spend three nights in a bush lodge in the National Park and I’m so excited I can barely contain myself.
‘Fabulous, fabulous!’ Mosi laughs, a deep rumble like the purr of a Lion. ‘May I get you both some lunch?’
‘Bim, you want something?’
I’m one of those people who has to eat every couple of hours or I feel a bit waffy, but today I just don’t feel hungry. ‘No, I’m OK thanks hon, just order something for yourself.’
John decides on a chicken wrap and devours it in three bites, smearing tangy mango sauce over the cribbage pegs which earns him a slap on the hand from me. I lose the game, as usual, and as a consolation prize I ask John to massage my neck which feels painfully stiff. I must’ve been sitting in a weird position without realizing.
We both settle down to read but the tropical air weighs heavy on my skull and the glaring early afternoon sun leaves burning spots of golden light in my vision, random letters dancing around the page like fireflies. My lower back is also now aching in earnest and I can’t get comfortable.
‘Hon?’ I look across at John who’s rubbing suntan lotion over his face, ‘I’m feeling a bit rubbish so I’m going to go back to the room for a lie down’.
John puts down the Ambre Solaire and squats down beside me. ‘Why, what’s up?’ he asks, concern making white furrows on his forehead where he’s failed to rub in all the cream.
‘Dunno’ I reply honestly, ‘probably just too much sun. It’s not like Cumbria is the solar capital of the world and I think my body’s in shock’. I try to make light of the situation but John isn’t fooled.
‘Do you want me to come with you?’
‘No, no, I’m fine. You stay and read your book for a bit, I just need a lie down in the cool’ my head thuds with every syllable and I make a mental note to take a couple of Paracetomol.
‘Ok, if you’re sure’ I can tell he’s wavering on whether to insist on coming with me or not and I plant a kiss on his greasy cheek.
‘I’m sure. I’ll sleep better on my own anyway.’
Our room is refrigerator cold and after washing down a couple of painkillers I lie on the crisp hotel sheets and try to have a little nap. I can’t settle. My brain whizzes with undefined thoughts and the pounding pulse which an hour ago was confined to my temples is snaking across the crown of my head, the pain ebbing and flowing with every beat of my heart. My back and neck throb in tandem and even though my eyes are closed the daylight coming through the white voile across the balcony doors is blinding. I roll over so that my back faces the windows and reach into my bedside drawer for my sleep mask, tugging it over my eyes and relaxing as it bathes my vision in soothing darkness.
My little fold-up travel clock marks the passage of time with an unrelenting tick which bounces off the walls, growing louder and more insistent with each motionless minute. The air con rattles out an icy cold jet stream but I slowly realize the chill of the room is being replaced by fire which starts as a pinprick in the base of my skull and spreads down my spine with the accuracy of a lit detonator charge, sending flames along every nerve until my whole body is alight with searing, burning pain.
I’m starting to feel anxious now, the symptoms of every tropical disease from Ebola to Malaria running through my panicked mind and I have to tell myself not to be so bloody ridiculous. I’ll just have heatstroke, after all it’s 82 degrees outside and so humid even my sweat is sweating.
Around 4pm I hear the click of John’s key card in the door and I’m weak with relief at no longer being alone. He dumps his bag and beach towel by the side of the bed then crouches down, pushing damp hair off my forehead.
“How you feeling Bim? Did you get any sleep?”
I don’t want to put a downer on his holiday but I feel so ill I simply can’t lie. “Honestly hon I feel crap.”
“Got to admit your face is like a beetroot” he teases “do you feel hot?”
I think about the raging furnace inside my body and whisper weakly “yep.”
“Where’s the little first aid kit you brought with you? Is there a thermometer in there?”
“It’s in my holdall in the wardrobe.”
John playfully tells me to “open wide” and puts the stick in my mouth, then pretends to look at his nurse’s fob watch while he counts for a minute. His grin fades though when the mercury shoots to 1020F which even he realizes isn’t normal.
“Bim, the Rep was in the lobby when I came up. I think I should go and have a word with her and see if maybe there’s a Doctor nearby who could take a look at you. What do you think?”
What I’m thinking is ‘why me God? Haven’t I been through enough? Couldn’t you just give me a fucking break and let me have a nice holiday like everyone else?!’ But I just nod my head in agreement.
The twenty minutes John is gone feels like an eternity but the good news is there’s a resort Doctor in the neighbouring hotel who is thankfully free to come over. Following a thorough examination his conclusion is that I’ve come down with the Flu, for which he prescribes Paracetomol every 4 hours, plenty of fluids and some antibiotics he just happens to have in his bag. I’m reassured it’s nothing more serious and take one of the large, plastic coated pills, willing my symptoms to lessen so I can just get on with the rest of the holiday.
7 o’clock and I’m alone again. John’s gone down to the restaurant for dinner but I’m still not hungry. I’ve been trying to drink as much water as I can to keep hydrated but all the liquid’s made me need to pee, which seems like an easy thing to do until I try to stand and find I have two dead legs. I bang my funny bone on the bedside table as I fall.
“Owww-a! God DAMN it!” I want to cry at the unfairness of the pain on top of everything else.
I shuffle my way to the bathroom and flop down on to the toilet seat, my numb legs trembling with the effort. My head’s as heavy as a bowling ball and I have to support it in my hands or I’m scared it’ll fall right off my shoulders. Even my wee burns.
I steady myself at the sink and splash cold water on my face, which has turned ashen under my tan, before collapsing back into bed. The red hot poker masquerading as my spine sends out shooting flames with every movement but I’ve gone suddenly cold. Goosebumps stand the hairs on my bare arms to attention and I shiver. My brain is in a vice, every thought squeezed in its vicious grip, and my whole head feels swollen. I wish John would hurry up back.
What feels like several burning, freezing, hazy hours pass before I sense movement and open leaden eyelids to see him smiling down at me, a plate of fish and vegetables in his hand, the smell of which makes me want to retch.
“Brought you some dinner Bim, just in case you’re peckish” he smiles.
I open my mouth to thank him but nothing comes out. Instead a violent shudder racks my body, goosebumps the size of peas breaking out on my legs and I hear a low groan, which I’m surprised to realize is coming from me.
“Bim?” John dumps the plate and shakes me gently. “Bim?!” I groan again, his touch like razor blades on my skin. “Shit” his voice is panicky. “Shit. Shit!” The bed vibrates as he starts to pace back and forth along the length of the room. “What do I do? What do I do?! Bim I don’t know what to DO!” he shouts frantically.
Compared to me John’s had an easy life and all the love and support he’s received from his family hasn’t given him any skills to cope in a crisis. Even in my delirium I’m aware he can’t handle the situation and if anyone’s going to do something it’s going to have to be me. I summon every ounce of energy I have to croak “get help.”
The pacing stops and he crouches down next to me. “Bim?”
Part of my brain still feels completely normal. It’s aware of everything that’s happening and is capable of lucid, rational thought, the problem being that between It and my mouth stretches a thousand miles of searing, arid desert and I don’t know if I can cross the space. I concentrate intently with every fibre of my being and haltingly whisper “knock on……neighbour’s doors……ask to sit…… with me…….go get help.”
“Ok” his relief at being given instructions is tangible. “Hang in there, I’ll be back. I’ll be back!”
And within minutes he is, with a stocky, dark haired stranger who states calmly in a broad Yorkshire accent “she’ll be fine wi’ me, don’t worr-eh.”
The bedroom door slams and we’re alone.
“Hiya Jak. Me name’s Dave and I’m a policeman. Your boyfriend says you’re not feeling too good.”
The words ricochet off my eardrums and in my head I reply “Hi Dave, nice to meet you. Fortuitous that an Englishman is staying next door. Thanks so much for sitting with me – I was too scared to be left on my own in case I stopped breathing or something” but all that comes out of my mouth is a primal grunt and my body is seized by another bout of violent shivering.
“Are yer cold?” asks Dave, tugging the bedspread off John’s bed and laying it gently over me. The ice melts instantly to be replaced by the fires of hell.
An awkward silence, still palpable even though one of us is semi-conscious, settles on the room, and is only broken by John bursting through the door and panting “the reception have rung for an ambulance, it’ll be here in about half an hour.”
I feel Dave stand up and say calmly “great, I’ll leave you to it then.”
“Thanks so much mate” John replies, “I owe you one.”
“No bother, I ‘ope t‘ospital can sort her art’”and I think to myself how brave it was for him to agree to sit with me, when for all he knows I could have some deadly contagious disease. One thing’s for sure, I don’t have the flu.