My husband knows that I spend most of my time in bed and he is totally cool with that. Usually when he gets home from work that is where I am. But the other day when he came home I was in the kitchen making us sandwiches for dinner (I know, exciting life of an Eeds person right!). I finished up and we ate in the kitchen as I was feeling strong, and then as I headed off to bed he said:
“You can’t go to bed now, it’s only 7pm!” …
…and out of nowhere I replied:
“I’m not going to bed, I’m going to my office!” … and we both laughed and looked at each other with a grin 🙂
He lthen asked if he could join me in my “Office” as he picked up his cup of coffee and his laptop. That was only about three days ago but ever since then our bedroom has been referred to as my “Office”. It stakes the stigma and dreariness out of “being in bed” which sounds so awful! Only a month ago I was at a specialist (post to come shortly let me tell you!) who I was seeing for the first time, and when she heard how much time I spend in bed she was horrified. She said mentally and emotionally bed is the worst place to be and we need you to be out of bed and up and about as quickly as we can!
Yes she admitted that she knows NOTHING about Eeds (had never even heard of it), and nor had she heard how much better I am since I learnt to spend so much time in my bed, saving up spoons and not hurting myself… It was a good reminder to me of how much effort I have put into this wonderful room, and that the last thing that it is is dreary.
I LOVE my office and over the last year I have done amazing things to make it my favourite place on earth. About a decade ago my Psychologist at the time encouraged me to create a safe place at home, away from the hustle and bustle of a busy family life where I could retreat when I need to and my bedroom became it. Even before I was diagnosed with EDS I spent a good deal of my life in bed. Not therapeutically, nor in a good head space, but simply because I was so sick, so much of the time, that I landed up there so often in REALLY bad space… and often for as long as weeks or even months on end.
So when I renovated a couple of years ago, I made my bedroom a place that if I ever had to be in it, it would be a wonderful place to be. I have a small fireplace (with a real fire), a bath under the window looking out over the back garden. It has a shelf for nice smelling things and candles. I took the ceiling out so that the inside of the roof is pitched and the beams are exposed, and I hung a chandelier above the fireplace. I have rented and moved countries so much of my adult life that this was a much needed home with simple pleasures and filled with all the things that I create.
I made the windows of this bedroom bigger so that they fill three sides of the room. When I sit in bed I can look at enormous amounts of sky, our HUGE tree at centre stage outside the middle window and all the birds that visit it, the small wooden deck on one side with the tiny garden that surrounds it, and the stone paved patio on the other side.
About a month ago I was getting fed up with having to get out of bed constantly (which defies all purposes of being there) to get things that I needed from the studio or the living areas, and so I created a set of shelves right next to my bed, and made pots and containers that are bright and cheery, and contain the kinds of things that I was constantly getting up and needing. Scissors, pens, rulers etc, all my pills (hidden in pretty containers that I got at the clearance outlet by Vera Bradley), some bandages and braces, a pretty water bottle, a little bit of chocolate (of course!), and basic sewing things (needles, pins, some thread etc). Filled in between with some silk flowers and it is a pretty corner and all within reach. I can’t tell you the number of times a day I use it… and all without having to get up.. from my “desk”? Is calling my bed my desk taking the analogy too far?
It is my favourite room in the house, and I love it. I love that my office is good for my soul in all ways … and if you need me for anything, I am most likely in my office (when I am not travelling that is haha!)
I love my office and the tremendous amount of joy I get from being here, which is a far cry from being “bed ridden”.