Living on Bedrest, or Victorian Novel Syndrome

“What it’s like to live like a character from a Victorian novel.” Or “On Eternal Bedrest”. Sometimes it seems like I’m the only one in the world who lives this way, other times, I look at the outside of terraced houses and wonder what mysterious madness might be going on in one solitary room inside.

“In a Victorian terrace in the St. Mary’s area of central Colchester lies a road, with butterflies flitting along… Along the road of butterflies lies a Victorian terrace, in number ** a woman sits writing in an upstairs room, running a small burgeoning empire but never to be seen by her neighbours. They whisper about her, ‘Is she a witch? A disgraced woman? Never a bluestocking!’ and she hears their whispers from her window, which is usually cracked open to allow in the air. She lies, legs outstretched, writing instruments on her lap. Life is too limiting for this woman, but in writing she is free and equal. She has long since learned that her arthritic fingers can write far more and far better on a keyboard, playing it like her childhood piano lessons. Pen and paper are too limiting for this woman, for whom writing and music are twins, but whose dancing body has long since ceased trying to keep pace with her mind and soul. She pauses for a moment, takes a sip of tea and inhales some medicine, and then returns, facing her page, headphones in, and ready to conquer her world once more.”

The above is one of many ways I keep myself entertained on bedrest — I write in fanciful ways. So actually, when I left school at 15 saying that I had learned all I needed to know, I wasn’t quite so far off the mark as I previously suspected. The above paragraph has inspired me to write a piece of fiction, which I have traditionally not been properly motivated to do… I rather enjoyed writing third person. And that, is an ideal example, of what it is like to live on eternal bedrest. You end up writing to yourself in different voices, and then being mad enough to publish that shit and call it art. It is refined boredom.

I remember times when I was very young, and homeless, if I was by some chance lucky enough to be sleeping in a bed in someone’s borrowed guest room, I often daydreamed about what would happen if I simply made my body go limp and refused to move or respond. What would they do? If I refused to move they’d have to at least carry me to a mental hospital, in which case I would still have a bed and be kept reasonably comfortable. It seemed like a potential solution to homelessness for a while, but I was always too practical, restless and merciful to those around me to try such a thing. Now, years later, I am living that fantasy, enforced.

I have an AVM which stands for Arteriovenous Malformation. When one of those is present, a tangle of blood vessels in the brain or on its surface bypasses normal brain tissue and directly diverts blood from the arteries to the veins. Then if you’re even more unlucky your AVM can bleed and cause various types of brain damage, which is what happened to me. I also have severe chronic migraine, which is a lot more serious than people give it credit for, but in my situation, one feeds off the other. Migraines can activate an AVM bleed for me because the blood is trying to rush through a tangled mass, it creates a bottleneck, and the vein breaks. For me, it is absolutely vital that I don’t over exert myself. I can actually feel it pulse in the back of my head when it’s bad. This makes controlling my weight nigh on impossible; I can’t exercise. However I do do yoga, which can be done on my bed and on a good day I can get a full routine in safely. I am overweight, but I literally do not eat food. I live on tea and smoothies. (Not by choice, I have stomach issues that are hangovers from malnutrition when I was homeless) I don’t consume a lot of calories, but I also don’t move very much at all, so everything I have goes straight to soft. My son says I am extra cuddly. I say at least I’m alive, but I miss my pre-disability figure.

On the plus side though, I haven’t aged much and I put that down in part to being on bedrest and out of the sunshine for most of my 30’s. The other night a lady I met was positive I was in my early to mid 20’s and when I pointed to my 10 year old son and said “He’s mine and I’m 38 in January!” she was shocked and said I had a baby face. I’ll admit to good DNA there, my Grandma stayed very youthful right into her 80’s, but as I said, I am pretty sure living in the bat cave has helped.

Sometimes I feel like I am this cobweb covered creature that is just wheeled out for special events, and then returned to my natural habitat. Someone I love very much said it more favourably; that I was like her best necklace, taken out for special occasions. That made me feel so good I don’t know if I can explain it. It’s really hard to watch life go by when you’ve got the mental energy to do so much, but the physical need to live wholly within the confines of a (rather lovely) bed. It’s hard to always carry on feeling useful. It’s hard to feel like the best mum in the world, but thankfully my son understands, from witnessing it first hand, that when I overexert myself, I pay for it royally. He knows that I’m resting in bed so that I can be with him for longer. I don’t want to have those awful attacks that are shaving years off of my life. Upon writing this I have just returned from A&E. I was rushed there in an ambulance. The gas & air was great for the pain but the worry was that my AVM was actively bleeding again, which would have meant emergency brain surgery. I had a CT scan; it came back ok, showing the old dried blood but no fresh blood. I won’t always be this “lucky”.

When you live predominantly in one artificially lighted room, it’s hard to keep days and nights straight sometimes. It’s not unusual for me to be up and hyper and ready for my day at 3am. I make a point of opening my blinds and window as often as possible so I can keep in touch with nature, but my eyes can be extremely sensitive to light so there are plenty of hours in the week when I live with the only dim lights. This is all really sexy isn’t it, a woman, in bed, lights dimmed… except half the time I’m vomiting, not so sexy! The rest of the time, sure, I’ll be sexy. But more often than not I’m actually just playing a card game with my son. I have taught him (home educated) entertained him and nursed him when he was poorly, all from this bed. There are an amazing array of ways I have learned to be a responsible, loving, fun parent without dangerously exerting myself physically. It is tough. I carry a lot of guilt that we’re not out at the zoo or the park together. I’m really lucky though because my son is super easy to take care of and I recognise that I have it easy in that sense. But hey, I had to have it easy in one way or another!

Obviously I do a lot of writing from bed, I wrote my great piece of work The Lemay Leveller from this bed, on this laptop. Countless blogs, articles, magazine features, and now a new Colchester newspaper have all emerged from this bedroom upstairs in an anonymous Victorian terrace. I sew. I quilt. Last week I went three days in a row, quilting for ten hours each day. I don’t always produce that much, I get tired too. I have two TV shows I watch, Murder She Wrote and M*A*S*H, I tend to get restless through any other TV, with a few exceptions. I have sketched out an idea for book number 2 which will actually be about coping with disability/chronic illness, but at the moment I am swamped with so many ongoing projects that I simply haven’t had the time to give to it. I hope that changes soon.

Facebook and twitter are godsends to us bedridden folk. It feels amazing when I accomplish something online because my 3D world is so limited. I have many dear friends who I communicate with daily which keeps me sane. Some even love me enough to come hang out with me in bed. I’m really blessed to be loved by some amazing people and they never cease to make me feel like I’m still included, but I won’t say there aren’t days where it feels like everyone else is living it up while I’m sitting here wasting away. I just have to try not to look at it in that way. Instead, be the necklace that comes out for the most special occasions, and be appreciated for who you are.

I would like to do something to raise money for AVM research but clearly a marathon is out. Maybe a write-a-thon?

Being on permanent bed rest isn’t something that I think anyone would choose. The number of events that I see going on around me that I can’t attend is thoroughly depressing. If I was able bodied I’d probably never stop. But I’m not an all powerful god, I can’t cure myself. No one else can cure me either. I don’t really have a choice but to make the best of it, be as careful as I can, and also still try to live life to the fullest. It’s not easy but I hope that one day there will be a blue plaque outside this little Victorian terrace, which marks all of the creation that has happened within these four walls, and the life I have lived in it. So much life, so many stories, so many ideas lifted off the ground, all from this bed by this almost anonymous woman. If you are out there and also inside — I hope you have all you need. I have been on the other end of the spectrum and slept rough — this is infinitely better.