My Bed (From 1st October 2006)

I wrote this piece after I had been rendered bedridden for months. I was vomiting like 6-8 times a day (NO NOT purging, just what looks like a problem with me/cfs or cyclical vomiting syndrome), I was crying every day in severe agony, I couldn't really drive so I relied on other people for many thing, but things at home weren't good and the hardest bit was that I had to drop out of doing my Bachelor of Theology (HONOURS) - I had an open invitation to return to my honours program at any time but so far that is still on hold. It is one of the very very few things I've had to walk away from :(. So what I wrote below was the outcome of months of being stuck in bed feeling like I was dying....and having so so many people think that having time to just "laze around in bed" is a good thing. Honestly? If its a Saturday or Sunday morning and you're having a quiet sleep in, or reading a book in bed, that's great! If you're relegated to your bed (or the vicinity thereof) for an unknown length of time....especially if that "time" might be forever on earth...its a whole different ball game. Hopefully this makes some sense.


My bed

My bed is a king single, it has wrought iron ends with what i think is stained pine posts (although the look is not dissimilar to a good mahogany). I have a blue doona cover, dark blue currently because its in the "winter" months, but this will shortly be changed to light blue. I have deep red (crimson) sheets, 1 fitted and 1 flat. I have a pseudo mink blanket with a dolphin on it folded at the end of my bed, it was a present and i quite enjoy it. But i am too hot (continually now) to have it on. I have an eggshell mattress on my bed these days primarily because it helps my hips as they hurt so much from the bones digging into the mattress. I have FIVE (5) pillows on my bed three of which are normal but made to shape into a v, the other two which are corner/triangular pillows but i lay out so that i don't hurt my shoulders and my neck so much.

When in my bed, i tend to lay on my sides (in the foetal position), on my stomach with one of my legs tucked towards my chest (in which case i don't use any of the pillows but rather sleep under them), and sometimes on my back. If i'm on my back it usually because i cannot sleep and am significantly frustrated, my back is killing me and hence i bend my knees (like if someone was doing situps), or i'm trying not to move for emotional reasons. Sometimes i lay on my back and cry, sometimes, I curl up and cry due to fear.

But you know what is so unique about MY bed? Is the amount of time i spend in it, particularly of late. It is SOOOO lovely to crawl into bed when one has aching joints, pure exhaustion after having accomplishing something, when you sleep late because you can but normally you have to get up early, or when you just lay there listening to the rain and the wind. It is nice to pray quietly in bed just before sleep and when i wake up. But it sucks to end up in bed because every time you stand up you want to faint and you don't know if you can make it through the day, or you stand up and realise you're legs cannot support you, or your body (legs particularly) hurts so much that with these things you are forced back to bed. It's not like when you have the flu and you welcome your bed for days on end. This is like frustration, where one part of you is ready to get up and face the world and the other part simply cannot do it. But what i've discovered over the past week, its even more frustrating when no part of you wants to leave the bed because of exhaustion alone.

I went out for awhile yesterday. I was lovely to see people whom i quite adore. But you know, sometimes i wonder if it's worth it...i get so lonely when i'm around people, but today, because i was out yesterday, i have been in bed all day. I managed to stand for 20 minutes to cook mum and dad's anniversary dinner (28th anniversary if anyone was wondering)...but then straight back to bed. That was the longest i was out of my bed all day. And not by choice. My sister and i had planned to go walking, we'd planned to go and get all the food for the dinner together...i wanted to get up and accomplish stuff around my room, i wanted to read some of my books. Instead all day i lived a half life of somewhat thinking (and the rest not being able to hold a thought together) and just having to stay where i knew i would be okay.

Everyone asks, "how are you?" and i answer "tired" or "sleepy" if i remember i answer "good" or i have something prepared that is positive. People only take the "tired and sleepy" lines for so long and they become immune. But i AM tired and i AM sleepy...i qualified for this disease so long ago and it's not improving, in fact of late i would say its getting to the worst its ever been (over a more prolonged period of time)...i am losing ability to function normally. I qualified for the disease and was able to say i was tired then...but now i'm so much more tired...how can anyone explain that you've been at a 9-10 for years and then all of a sudden you're at a 10+?? How do i answer their questions honestly? And even more importantly, if i answer "i'm good" to people then they think it's all over and i'm fine...i know this because of how they treat me and what they then want me to do! But i don't want to answer "tired" etc to everyone all the time, how depressing for them? What to do.

In a strange way my bed has become my friend. It is where i can rest, it is where i can sleep (sometimes), it is where i stay safe from myself and others, it is where i can cry, it is where i dream, where i laugh, where i pray... the only other place i have this is in my prayer journal...but even that is usually on my bed. My journal is the same type of journal A4 140 pages blue cover, metal binding...i use a blue staedler pen. Surprisingly (for those who know of my obsessive-compulsive tendencies with numbers and "things") i can vary the pen i use occasionally...but not often, its usually more out of necessity than desire. Anyway, Lamby sits above my bed ready for cuddles. He is pink but he is a boy, i've had him since i was born. NO ONE interferes with lamby. Toby (a stuffed large dog) sleeps on the floor at the end of my bed, he cannot sleep on my bed because cara (our cat) is scared of him! Cara is another regular on my bed. I don't think i'd cope if anything happened to her. She is a ginger female and gorgeous. Great personality, chats to me lots and comes in and cuddles all the time.

I love my bed...but i don't want to be in it for so long anymore. ...I never actually did. I love my bed, but it is boring. I don't know how much longer I can do this.

Notes: 

1. My bed has changed since 2009 and so does how I sleep, I MUST sleep sitting partially upright now or I can barely breathe and end up having to use ventolin to try and breathe a bit. 

2. This is NOT a symptom of depression, these are symptoms or myalgic encephamyelitis/chronic fatigue syndrome (me/cfs)...I often have desire to do stuff, but my body refuses to cooperate, I feel incredibly lazy when that happens. 

3. Dina and Cara (our family cats) have not resided with me since I moved away from my family in May 2008. They eventually came to stay with my sister and my cat Dina recently died. I miss her. I also miss Cara, the way she would just tuck herself up on my hand so she has human contact but isn't being smothered, how I miss them. I see my sort of adopted in my head kittens Mischka and Zoe much more regularly now and they come running when they see me....but I miss them all a lot. Bed can be a lonely place.

4. I DO do study and attend appointments etc. What people don't realise is that I do a lot of my study almost completely flat on my back (just with my chest slightly elevated for that whole breathing ordeal) and I put many things and people off in order TO study....but even though I know its not good sleep hygiene, I study in my bed, I read (when I can - when I'm too tired to even look at a computer screen, even for a TV show, I will just close my eyes and listen to an audiobook), and I watch tv in my bed.

5. I am now the owner of a rocking recliner chair. Some times when I am too afraid to sleep in my own bed, I will sleep on the rocker recliner and gentle rock myself to sleep, in so many ways, the couch is the alternate to my bed, but again, only when I'm well enough for it.

Getting the picture now? None of this is easy or good or fun. Hope it makes some sense. Feel free to ask as many questions as you like :)