Dreams; Movement; Delierium. Noise and light. A goodbye kiss. Door shuts; Footsteps fading. Blindfold and earplugs, dark and silence.


A loud noise breaks through the silicone barriers, but I’m not sure where from. Doorbell! I clamber out of bed, and crash straight into the door. Ow. Somehow I stumble to the intercom before it stops ringing.



I press the magic button of letting-people-in, but the patronising lady inside the computer fails to announce the opening of the door.

“Um. Is it opening?


“… Um, I can’t come down and let you in. Sorry. Could you try another flat?”

No post today. I make it back to bed, propping myself up on the wall as I go. The cat has emerged from his sleep to investigate the noise, and squeaks up at me. I check the time: half one. I suppose it’s lunch time for a little kitten. I shuffle to the kitchen, the kitten chasing the end of my stick each time it’s lifted up, and grabbing onto it with his tiny paws. My legs are working much better today.

I take my toast back through to the bedroom and eat in bed, checking my e-mails and catching up on comics. I make the mistake of scrolling down the facebook front-page; happy pictures of people who used to talk to me, having fun. My classmates preparing for graduation, acquaintances spending time together. Normal life. Oh God, don’t let me become bitter. I don’t want to be that person. I want to rejoice with people, but it hurts. It hurts so bad. I force myself to ‘like’ things that I know I would be happy about if I could join in; one day I might feel it. The light is filling my eyes with vinegar again, so back to dozing in darkness.

I somehow slept until after four! Pillows are propped up against the headboard, and I lean back against them, trying to get comfortable. I’ve been practicing sitting up: I want to be able to sit for extended periods without feeling like I’ve caught the plague, and my back being in agony for days. Not sure it’s working, but it would be great if I could use my proper computer again (with suitable support – desk chairs? Let’s be realistic!) Tibby looks at me pointedly, so I make room for him to sit on my lap and he snuggles against me, resting one paw on the trackpad and one on my hand. There’s a whole computer front set before him, and he picks the two most awkward places. Cats. I navigate to an online support group I joined, moving his paws out of my way repeatedly. Eventually he gets fed up and lets me use it properly.

M.E is the only illness I have ever heard of, where patients are actively discouraged from joining a support group. I think it stems from that common misconception that we’re totally well aside from “false illness beliefs” – maybe they think that if we talk to each other about it, we’ll make ourselves worse. I like to “bolster my false illness beliefs” by discussing the latest scientific research (when I can comprehend the papers), and chatting with other people who are housebound. We do all sorts of  activities that are “detrimental to our mental health”, like sharing pet photos and ideas for crafts, and giving out birthday greetings. New people join every day, asking for advice about the same things: My friends have all left me; My doctor thinks I’m faking to get attention; My family have no income anymore, how do we live?; Is there a cure?; Is there a treatment?; Is there any help out there at all? There’s a chatroom too, but the conversation is too fast for me to understand what’s going on; it gives me a headache. Using a forum is nothing like socialising, really. It’s nothing like friendship at all. It’s the best thing I’ve found.

I scan through the posts that are interesting, but I can’t really take the words in, so it’s more a case of reading the titles and moving on. Someone’s been admitted to hospital; hourly seizures, and they can’t swallow anymore. Someone has a new pet. A new paper’s out, something to do with cell dysfunction in M.E patients. Someone’s feeling worse, someone’s feeling better; ten threads discussing every-day things, and ten more from people panicking because they’re too ill to work. Someone’s new, someone’s taking a break, someone’s needing a hug, someone’s a grandmother! I’m not up to replying beyond “hugs” and “congratulations”. My headache gets stronger and I feel like I’m about to throw up. We take another nap.

Half an hour before G gets back, I get rid of my clothes from Sunday and run myself a bath. The water pounds against the tub like machine-gun fire as the tub slowly fills with hot, steamy happiness. I test it gingerly with my toe, forgetting that my foot is a numb ice block which won’t tell me anything. When I try to step in, it burns my ankle and I hastily withdraw and add more cold water. I’ve always liked my baths at a temperature G describes as “like the lava in metroid”; I love feeling the heat swirl around me and soothe my aching muscles. I lie back in the darkness, soaking up the warmth. Bliss. Tiberius curls up beside the tub, enjoying the free sauna.

After five minutes or so, my heart is doing it’s level best to escape from my chest. I used to enjoy long, hot baths like this, but I just can’t deal with the temperature anymore. I run the cold tap, enjoying the coolness swirl under me and around my body. The sound alerts Tibby, who pokes his nose over the side, fascinated by the water. I flick some at him and he drops back to the floor, trying to work out where it came from. I drip some more over the side and he starts from drop to drop: what sorcery is this?! The bath has cooled down uncomfortably, but at least it’s relaxing again. Thank you God, that I can still bath.

G comes home, right on time. “Are you in the bath? Do you want a wash?”

The bathroom light is blinding when he switches it on, but comprimises must be made for the sake of hygiene. He rinses my hair in the water, then pours some of his shower gel into a flannel and moves onto the rest of me. I point out how terribly erotic this all is; he laughs: “It’s somewhat spoiled by the cat viciously attacking my feet.” He helps me to get out – the sudden weightyness you feel when you step out of water is enough to prevent me from doing it myself – and helps me get on a towelling robe. I shuffle back to bed and lie down, waiting for my skin to dry. The heat dissipating from my body makes me sleepy, and I doze a little as G plays a game on the computer. Putting on clean pyjamas feels amazing.

G got us a pile of ready-meals from the reductions well, much more convenient for a full-time employee/full-time carer, and his wife who can’t cook anymore. I’m hungry, so he gets up to microwave them; I follow him to offer my limited assistance. My legs feel a bit shakey; too many trips to the toilet. Six steps in, they give out. I slump down by the front door and wait for him to come back through.

“What are you doing?”

“I wanted to be a helpful fairy…”

“Silly, you need to rest. I don’t need any help, come on – back to bed.”

He helps me up and half-carries me back to the bed, then goes back to the kitchen to finish dinner. We eat in front of our computers, him playing a game, me chatting to a friend on msn. I don’t talk to people very often in person, but a couple of old friends who live far away make a point of contacting me whenever they see me online. Thank you God for their support. I wish they lived closer.

We hold hands as we listen to the Bible, then stay up late, talking about things in the dark. On the worst days, this is what I miss the most – spending time talking with him, sharing our hearts. I feel guilty – this isn’t what he signed up for. Worse, poorer and sickness were in the vows, but I didn’t want to put him through them. He doesn’t seem to mind. Thank you God, for such a good husband. He sleeps soundly, and I pray into the night, counting the hours until I fall asleep.


2 responses to “Wednesday

  1. I wish I lived closer. But I am still here, in some format. In any format I can be.

  2. Pingback: Living with ME | a Path Through the Valley