huff - you know what, I am tired of bad news. What strikes me as unique from these past few months is not just the lying down all day, but the number of times I've given myself til midnight, til the next day, next week, to get over something.
Here's todays:
Dear Billygean
I know that you think I have died or something like that! but I heard back from the Registry last week that we cannot agree to you doing the exams at home. I will ring you tomorrow to see where we go from there.
Head of Law College
Hum, yes, I did rather think he had died - or rather, that would be the only suitable excuse - since he took three months to reply to an email and I found out on Friday that I haven't deferred the year yet because he had not filed the paperwork.
I guess that's why he's not a lawyer anymore.
Labels: illness, law
"I dunno what it is," I say to MindReader on the phone, "I mean I feel alright physically, but I just feel like I haven't slept, I feel all confused and I keep staring into space. I feel like - basically, I would like a cup of coffee."
"Nooo," he says, "bad Billygean. What do you think caused it?"
"Shopping, probably," I say, "but I'm suspicious of the free from everything chocolates."
"Why?"
"Cos I ate loads of them and that was when I started to feel bad."
"What do you think they had in them to make you feel bad?"
"Well, maybe they had traces of caffeine in."
"So why do you want a cup of coffee?"
Labels: illness, MindReader
"I'll make you a Chinese,"
MindReader had said in response to my food cravings.
I had found him a recipe, given him a list.
"Actually, I'll come," I had said casually. "You won't know if some of the stuff is gluten free."
I did not reveal my private hopes.
The car journey took longer than expected, and the supermarket was crowded and full of hazards; grapefruits rolling out in front of me, toddlers wandering around.
My eyes seemed wider than myself, as I felt the cool breeze from the fridges, smelt fresh fish and herbs and spices.
We bought all 19 ingredients and I paid at the till - at the till! - with my
cash card, barely used over the last 6 months.
6 months, I think as I sit in the car as
MindReader puts the shopping in the boot. The sounds of The
Stereophonics wash over me and I realise that - a mirror into the future - whilst I will never be glad I got ill, I would not be able to imagine my life without post viral fatigue, even when it is over. Never again, I think, will going to the shops be simply, shopping, a chore.
I lean back in the chair, look at the clouds, and allow myself a few tears. It is nearly over.
Labels: illness, MindReader
MindReader and I are lying on our backs outside under the stars. Well, I am sort of on his shoulder, because the ground is cold.
"I'm sorry I'm so - urgh - needy," I say, idly watching a blinking star peeking out from behind my house.
"It's fine," he says, relaxed as ever. "It's more than understandable in your situation."
"I know," I say with a wave of my hand; I have heard more than enough about my
situation. "It's just rubbish, my mood just sinks when you leave, and picks up again when you're back," I say, with the creeping realisation that, sickness aside, this might be called
being in love.
"I don't really know what to do," I say, propping myself up on my elbows to look at his eyes, which look almost navy blue.
"Well," he says softly, "do that typing for Ex Boss, earn some money and a sense of - purpose. Do things you love. And keep getting better."
I lean back on him and watch the stars.
Labels: illness, MindReader
Gosh, here is a big public thank you to GlutenFreeComputerGeek who has just sent me a huge parcel containing:
Chocolate tea
2 x gluten free dairy free chocolate buttons
Dairy free FUDGE, which I hadn't even considered how much I would miss fudge and now I do not need to!
Dairy free (etc) brownie
Digestive biscuits!
Chocolate Rice Crackle bar
Hurrah for junk food!!!
Labels: diet
Courtesy of morphthing.com, what mine and MindReader's babies will look like. He said it's "quite possibly the most alarming picture he's ever seen."
Labels: MindReader
I curl up on the sofa with a hot mug of decaf
soya tea.
Well, it was almost perfect.
"I think everyone would benefit from seeing a psychologist," Lucy is saying. Lucy is my best friend in the whole world, and she dates a lovely boy called Ben. I don't usually blog about her because our conversations are too neurotic. Or about tampons.
"Me too," I say, "like admin for the thoughts."
"Although," she says, "the
Bens and
MindReaders of the world probably don't need it."
"No.
MindReader would be utterly baffled by therapy."
"So would Ben."
"What would they
do?"
"I think
MindReader would say he was fine and discuss dinner or football."
"I think Ben would humour them. And smirk."
Labels: MindReader
1. The instructions said "put an egg white into a bowl and whisk until it forms frothy peaks but is not stiff." So, I put an egg white into a bowl, removed the shell, and whisked it. For half an hour. Egg white remained yellow piss-like liquid and did not become frothy or peaky.
2. Continued anyway - because there is no alternative path for when you've fucked it up. is there? - instructions told me to beat the ground rice, ground almonds etc into the peaky frothy egg white. Therte was 150g of said ground almonds and rice. This OVERCAME the egg white resulting in, basically, ground almonds and rice. In a bowl.
3. Pushed on regardless. Horrible Lady who wrote the book said to "roll the mixture into balls and place on a baking tray." My mixture was not rollable. I spooned flour-like mixture onto a GLUTEN FREE RICE SHEET and exited the room.
I did stand up for 20 minutes though :)
Labels: baking disasters, illness
Hi!
Sorry this is going to be boring. But if I do not update like this, my blogs will have no context, and you'll be all like, why is she drinking rice milk?!
1. MadFather has been made redundant, and I have been refused benefits THREE TIMES because apparently there are loopholes even when you are broke and ill, so, ExBoss has given me a job! That's right! A couple of hours a day, or whatever I can manage I think (hi, ExBoss!) lying down with Beloved Laptop, typing, then will send typing back to ExBoss in return for money. And then can buy cardigans! And bath products!
2. Finally got the blood test results out of Purple Eyes. I had to quote a statute! They were 1.9 and 1.95 which means nothing to you or I, except that I thought 1 point anything was a pretty negative test until I realised that anything above 4 is considered positive. So, as the doctor said quite casually, my body is producing antibodies to
something I'm eating.
So I spent a while talking to my very extended family, the people who have all had post viral fatigue and they agreed that gluten, dairy and caffeine were all culprits in keeping them ill. So, because I want to be better quickly (and we shall worry about reintroduction at a very much later date), they have all gone out of my diet.
And OH MY GOD. The caffeine headache. Sod gluten, I don't even like bread (although it does make snacking hard, would you believe every bag of crisps in Sainsbury's contains either gluten or lactose?! Or chocolate - even
dark chocolate which is rubbish anyway. So, am resorting to snacking on so much fruit that I am almost pooping every other day :o) but caffeine I dearly miss. My poncy decaf soya coffees do not cut it. Indeed just as MindReader climbed into bed next to me, instead of carressing him like the loving housebound girlfriend that I am, I bent forward on all fours, put my head into his lap and pulled at my hair until he got me a painkiller. One of the few that doesn't contain lactose.
So. Yes. Caffeine drama. If you recall I did not succeed
giving up caffeine before. But there's a little more at stake this time.
3. Having drama with the college of law where I used to study. The term was split September - February and March to June. Please bear with me. I can practically hear a thousand browser windows closing. So: I was supposed to sit the exams at the end of February. Obviously did not, choosing to have coffee and crying with the tea ladies instead. Now I have to do those exams this August. Obviously Body does not want to, because Body is addicted to Neighbours and sleeping in. However I have since found out if I
don't sit them, because of - joy of joys - some new legislation coming into force and changing the whole course, I will have to repeat the whole year.
Which costs £9,000. (Future law firm paid this last time, because they are nice, and rich. I have not asked whether they will pay AGAIN because I think they did not bank on recruiting a housebound lawyer).
So, you're up to speed.
Labels: diet, illness, MindReader
Well.
Since I published my email the other day I have had 26 reader emails. Life stories from their own experiences of M.E/post viral fatigue to questions about what my politcal views are to advice on how to not get down whilst am in bed on the sofa.
It is honestly an honour. So: thank you.
MadFather and I are in a bookshop, just before closing so the aisles are cool and empty.
This is, of course, huge progress given my propensity to browse in book stores so do not tell The Glands.
MadFather silently points to a yellow book. I shriek and pick it up.
"Living with M.E or post viral fatigue," I read. "
Living with?"
MadFather looks as if he thinks I am about to have a
I'm going to have M.E for ten years full blown hissy fit.
"Living with M.E?" I say again, sitting down on the bottom shelf.
MadFather sits next to me and opens the book randomly.
"How to: shopping," he reads. "You may be able to organise a carer to take you shopping... blah blah blah... organise a wheelchair."
I am appalled, and stand, about to stalk off into the
Tragic Life Stories section.
"I don't know if you've noticed," MadFather says, "that, even if you need a lie down afterwards, you are shopping."
And suddenly things seem brighter.
Labels: How to, illness
Hi!
I have added my email at the top there (F5 and ctrl if you can't see it) and have added a LAMB BAA-ING sound to my outlook for when I get email.
So, if you ever want to talk privately, you can, with added baa-ing sounds!
BG
Labels: asking the internet
"Aw," I coo, on my hands and knees in my back garden in the twilight.
MindReader and I have found a hedgehog ambling across my lawn in the darkening blue light.
"We should leave some food out for it," I say.
"Nah," he says, dropping down on all fours next to me. "It's probably just passing. It's travelling."
I smile. His eyes meet mine and then he rolls his eyes.
"Just remembered I was a bit inappropriate at work," he says.
"Oh?" I say, still on the ground looking at the hedgehog.
"Someone at work told me that this other guy, Tony, was moving offices for like the fifth time in five years, so I said he sounded like a gypsy."
I wince slightly, used to MindReader's edge. "Did you get a laugh?"
"Yeah. But also some people looked quite disgusted."
"Story of your life," I say.
Labels: MindReader
"It's negative," PurpleEyes says, and the strand of hope running from my stomach to my mouth sinks. "So you can eat all the cakes you want," she says, smiling, like it's a good thing.
I try and pull it together. "Right," I say. "Well I want to test for Addison's disease next."
"What?"
"It makes you dizzy, and it also runs in my family," I say. I hate being pushy.
"Why do you want to test for it? You have chronic fatigue."
"I don't," I say with a new confidence born out of sitting with my body day after day, trying to figure it out.
"You
don't?"
"People with chronic fatigue have achey limbs, generalised pain, acid reflux, cannot sleep, cannot concentrate and have what they refer to as 'mind fog'," I say. "I don't have any of these. Furthermore," I say, in full lawyer mode, leaning across the desk and looking her directly in the eye, "I am not
tired. I used to be, I used to feel like I was dragging my body around with me. I don't have that anymore. I am too dizzy to stand up, and I want to know why."
Her mouth twitches, and I realise with a start that she looks sort of - proud. "Very well," she says.
Labels: illness
"I've found my wedding dress!" I announce to MindReader proudly.
"That's good," he says, standing in the doorway. "You
do know I haven't proposed?"
"Oh yes," I say. "But it's beautiful so I've bookmarked it."
"Okay," he says.
"Want to see?"
"No," he says. "It's back luck for the groom to see the bride's dress."
Labels: MindReader
Blood test is still not back.
"Yeah I'm not sure
where they are," PurpleEyes said.
Which was reassuring.
This is kind of worse than my degree results, and I didn't think anything more could be at stake, then.
Labels: illness
"I need a wee," MindReader says, extracting himself from me and the sofa.
I stand up too. "Have you seen those slippers?" I say, looking at my cold feet. "The rabbit ones?"
"Yeah I have, hold on," he says, disappearing into the next room.
Giggling, I dash to the toilet.
"Billygean!" He says when he realises what I've done. "That is not acceptable behaviour!"
Labels: MindReader
"Mum told the wedding dress story when she came over the other day," I say to DoctorSister on the phone.
"Hm?" she says.
"You know, how you forgot your purse and she had to pay £100 deposit... two years ago..."
"Oh, God, MadFather paid six grand towards the wedding, she should just get over herself."
"Mm. How was she was you saw her?"
"Oh, full of it," DoctorSister says. "How you are in the bath when she comes to visit..."
I smile. I was in the bath once. I am forgetful.
"How you're always lying down and are lazy..."
The words hit me like bullets.
Labels: illness
"A few cooking questions," I say to MindReader down the phone.
"Hm?"
"I am supposed to have 50 grams of
split almonds. I have normal almonds."
"That's fine," he says, "just chop them up like peanuts, in half."
"Okay, and I'm supposed to
grease two baking sheets?"
"Right," he says, "just get some butter or marg on a piece of kitchen roll and rub it all over the baking tray and you'll be fine."
"Ooh, okay," i say. "On the underside of the tray, too?"
"No," he says, snorting, "you muppet."
Labels: MindReader
This is not only goosebump-inducing writing but has summed up
exactly what I feel about music.
It encompasses why I took three hours to think of two songs to play at MindReader's sister's wedding that I am probably not even attending, it is why I defend McFly and their Beatles-like ability to write a catchy melody, it is why Time of Your Life sums up every summer of my life, why I struggle to converse with people who haven't thought endlessly of their five favourite albums, and why when MindReader and I first kissed, the fact that Run was playing in the background made up for all the waiting entirely.
And, Corinne and I have identical tastes in music. So there you are; an education in BIllygean. Without me having to rant at you.
Labels: recommending
I watch the syringe sink deep into my skin and begin to fill up with blood.
"You seem better," Nurse says.
"I - thanks," I say. "Whatever it is is going - very slowly."
"No, I meant you're less psychotic - about the needle."
"Oh, right," I say, taken aback.
Psychotic?
"Cheers," I say, but my eyes meet hers, and they are smiling.
She removes the syringe and walks across the room.
"Coeliacs disease," she reads off the front of the envelope she places the blood into.
"Mmm," I say.
"Do we want this one to be positive?"
I weigh it up. No more cake. Harder to eat out. Very hard to travel. But then - right now, the last time I ate out was December.
"Yes."
"Fingers crossed then," she says, and I watch the blood rolling around and around its tube, all the way to the lab and out of my hands.
Labels: illness
Well. MindReader is back in the same country as me although still an hour away and is coming over tomorrow. So I am in less of a scary mood and all I can say in my defense is that sitting on the sofa for 6 months affects your mood in fairly psychotic ways and makes you possessive of things you shouldn't be, like laptops, remote controls and boyfriends.
But, I wish I could be cool - the girl he thought I was. Maybe after this whole nightmare is over, I can try.
Labels: illness, MindReader
Huffed all evening due to lack of contact from
MindReader.
He rang this morning, his voice very deep and hungover, full of tales of drinking til late and playing golf and going for curries.
It only served to remind me of the things we no longer do - of lingering hours in restaurants and of standing, our arms around each others' waists - standing up! without thinking about it! - talking to friends over wine.
And it then reminds me of all the things I used to do (
used to do, when did my life become a past tense?) when
MindReader and I were apart; of trips to Oxford in the sunshine, of summer nights lingering over wine, discussing bodies and blow jobs, of
girly shopping trips for shoes and Starbucks breaks.
And then, ever the lawyer, my mind jumps to where we
should be, where we'd be if my body had not intervened - this summer, travelling around Thailand, Cambodia, Australia - and then, both lawyers, living together, cooking together with me NOT sitting on the kitchen floor, seeing plays and films and eating out. I think of people I know who have this life - not a dimly-lit life on hold on their sofa - and I wonder they're not ecstatic all the time.
This was too much for me to say on the phone. So instead I was curt and rude until he said he had to go.
Women, hey?
Labels: illness, MindReader
Huff. MindReader is on a stag 'do. Because we have OLD FRIENDS.
He has no reception.
I would just like
one text.
Labels: MindReader
Maybe I should have more blue days.
This appeared in my inbox this afternoon, courtesy of MindReader.
Labels: illness, MindReader
"What's wrong?" MadFather says immediately as my mouth droops.
"I just - "I choke back the words. For how many different ways are there to say I am absolutely sick of lying on the sofa and I am so ashamed my body has given up on me?
He gets me chocolate and coffee and once I have cried it out, mysteriously disappears.
He returns later with his friend's DOG. We're renting her for a day!!
How wonderful!!
Labels: illness
"Woe," I say to MindReader.
He is cooking in his sexy work suit and I am sitting on the kitchen floor. Such is chronic fatigue life.
He stops chopping a pepper and looks at me. "What?"
"Well, after today you have the stag do all weekend... and now you've finished college you won't be here as much."
"I won't always work in Shrewsbury," he says. "I was meaning to tell you, a recruitment agency have basically offered me a job in Telford, which is half way between here and home, so I could see you a couple of times a week..."
"Ooh!" I say, "what did you tell them?"
"Well I said I'd have a talk with my partner about it -"
"You said that?"
"Yes, why?"
"Aaah..." I say, melting on the floor.
MindReader, who doesn't understand women sometimes, looks on, baffled.
Labels: illness, MindReader
"This is exactly like the hole we've just done!" I say to MindReader as we are putting on Wii Golf.
"Yes," he says. "Except it's 300 yards longer and a totally different shape."
I sit back down on the sofa and pick a bit of fluff studiously off my toes. I sit up and stare at the wall, thinking.
"It's the conversations I love the most," MindReader says.
Labels: MindReader
"I like houses with those things on, ivy," I say to
MindReader in the fields near my house., indicating a beautiful white, ivy-covered house. "Although they are full of spiders."
"There's ivy on my house," he says as we walk towards the sunset.
"Yes, and you have a spider problem."
"I do not have a spider problem,"
MindReader says. "
You have a spider problem."
"Fair point."
"Ooh take my photo," I say, stopping suddenly as the sunlight skates low across the fields, drenching them in honey-coloured light.
I take my glasses off and put them in
MindReader's back pocket. After I have posed - for I am obsessive about documenting my progress - we examine a ladybird, have a cuddle and walk slowly back to the car.
"It's beautiful," I say. "I wish I could stay longer."
I shield my eyes and gaze across the fields, bleached yellow grasses swaying in the evening heat, the sunset turning the sky shell-pink,
MindReader's freckly hand in mine.
"You have made so much progress though," he says.
"I know," I sigh, a month ago I would have given everything to be able to walk in these fields. And now I want twenty minutes instead of ten, thirty minutes instead of twenty.
I look across the fields and everything is blurred. "My glasses?" I say, turning to
MindReader.
"Oh," he says, feeling his pockets. "Crap."
We re-trace our steps, back up through the thigh-length grass.
And this is what I miss; the in
betweens.
Stopping to buy food for a barbecue. Changing a light bulb. Sheltering for a moment from the rain. A lost passport, moments before departure, and room turned upside down and filled with frantic laughter. Glasses lost in a field.
Up until now my world has been fractured; the links removed because my body couldn't cope with the main aspects of life.
"Found," I say, straightening up and looking into
MindReader's blue eyes framed by the sun.
Labels: illness, MindReader
"Hello," Cousin says.
"Ooh, hello," I say down the phone.
"Been following your status updates and things on
facebook," he says, "and just wanted a word."
"Ooh, okay," a bit intimidated. Cousin studied astrophysics at Oxford,
after all. And then chose to become a fireman.
"Well I don't know if you know I had chronic fatigue?" he says, and my mouth opens.
"No."
"Well I dropped out for a year," he says.
"Ooh," I say, "I'm glad it was only a year, I hear so many horror stories..."
"Well, yes," he says, "mine wasn't chronic fatigue in the end."
"I see," I say.
"Do you have any like - stomach symptoms?"
"Yes, I was plagued with stomach things all last year," I say. "I missed my graduation because of them, threw up on my bank manager's shoes..."
"Right," he says. "And you're exhausted and - dizzy?"
"Yep," I say.
"Hungry?"
"Starved," I say, "eating more than when I didn't lie down all day."
He
hmms. "Well what was wrong with me was
coeliacs - gluten intolerance," he says.
My interest is pricked. "And the chronic
fatigue went - when you gave it up?"
"Yep," he said. "Well I was like awfully unfit, but basically it went quite quickly."
I smile slightly.
"Get a blood test," he urges.
I roll my eyes. "I faint after and I get this horrible rash because my blood won't clot even though my platelets were normal."
"I got the same thing," he says, "when I was still eating gluten."
Labels: illness
"Hey," I say as
MindReader locks his car and strolls across the garden to me in the late morning light.
He wordlessly hands me a Lush bag. "Ooh ooh," I say, "thank you."
"We got a free soap, too," he says, and my oohs get louder.
I look up at
MindReader's crinkly, freckly face surrounded by the sunlight. "How was your exam?" I say.
"Brilliant," he says, his face breaking into a smile.
"!" I say.
"A girl was leaning over to get something off the floor and she
fell off her chair."
I shriek with laughter. "Lawyers should have mastered leaning over," I say. "How did you contain yourself?"
"I didn't."
Labels: law, MindReader
"John and Lizzie's photos are amazing," I say from the sofa to MindReader, who is putting in Wii Golf.
John and Lizzie are a couple we know, who got together in the same manner as us: namely, that they have no will power. And consequently have an amazing relationship.
"From China?" MindReader says.
"Yep. And then they seemed to go straight from the airport to a party," I say as I stand to take my shot.
MindReader's arms circle around me as he guides the club backwards. "They're amazing," he says. "Especially Lizzie. She's always busy."
My fingers grip the Wii remote very tightly.
I want to be like that, I think, before I can stop it.
For you.
"You okay?" he says immediately, and I meet his vivid blue eyes, communicating all that is in my head.
He wordlessly puts his arms around me.
Labels: illness, MindReader
"Am having a blog-related nightmare," I say to
MadFather as he walks in the door.
"Oh?"
"One of my more - um,
persistent - readers has found out my real name," I say.
"Oh dear, how?"
"He won't really say."
"Is he going to
out you?"
MadFather says.
"Well," I say, "I've told him I might get fired and to please not..."
"You might get the sack anyway,"
MadFather says, "if you can't break your addiction to the sofa."
Labels: Dad, illness
"Wow," MadFather says, stepping into the room in his work suit. "Long time no see."
BalletFriend is here. We used to attend a sort of military, ballet themed training camp when we were teenagers; in other words, ballet school, with all encompassing foot bleeding, stomach crunches, and bunions.
"I know," she says.
"What have you been up to?" MadFather says, handing her a cup of tea.
"Got a 2.1 in business administration, marketing and human resource management," she says. "And now I'm a marketing assistant at a multi million pound company."
"Wow," MadFather says. "You enjoying it?"
"Nope," she says. "I hate it. I want to be an actor."
Labels: Dad
The Algae arrived this morning. It is, apparently, nature's perfect food, and to be sure any placebo effects work, I read about ten stories on the internet of people whose CFS was cured overnight by the algae and how one diabetic man's insulin needs dropped 8 times in 11 months. Hmm.
Algae comes in rather large capsules which presented usual psychological gagging problems. Ended up sucking on the plastic until the algae leaked out which was not that pleasant.
Doorbell rang shortly after algae-taking.
"You alright?" one of MadFather's friends said.
"Fine, fine," I said, stepping away to let him in, the energy already draining out of me.
"You've erm - got something..." he said, pointing to below my mouth.
"Oh, it's just - algae," I said.
"
Algae?"
Body, I hope you are happy.
Labels: embarrassing, illness
