My friends in a box

My friends are in a box. Yep, you read that right….a box. There are lots of them…neatly packaged in an easy to access square.
These people don’t mind when I cancel plans I had with them because I couldn’t keep my eyes open and they don´t mind when I suddenly have to go offline because I need to lay down or simply go to a quiet room and be alone. They are the only ones who have felt the frustration when all this happens but most importantly, they are the ones who would never, ever, under any circumstances, say the phrase that makes me cringe and shoot fire from my eye sockets…."but you don’t look sick".

I was diagnosed with ME/CFS 3 years ago. In those 3 years I have learned the tricks of the trade: smile often, speak vaguely and cry alone. Eventually, I got so good at living the tricks that I adapted them as part of my personality. I didn’t look the part, obviously, so why even bother trying to explain it to anyone? I’ve seen the looks….trust me, I’ve seen all of them….the way they narrow their eyes and shake their head as I leave the places or parties early or before it even gets started. I’ve lost a few friends than because of my illness, and eventually it got to the point when I stopped caring.
Until I discovered the people “in the box”.
I can’t tell you how many times I´ve had to quit conversations because I simply can´t find any strength to talk or find the words that seem hidden in the back of my brain somewhere. I know so well in my heart what I want to say and I feel the urge to talk to my friends - but have to give in. I meet some of my "old" and "real" friends very seldom but those times are precious and I am happy to see them, feel the hug and see their faces as we speak. Still, it takes so much of me to be able to meet and talk that the times I meet with them are getting less and less. I just don´t have the strength anymore. I try to catch up on things that my "real" friends do, but they all lead a very hectic life full of activities and I can hardly keep track of it all. They are busy as they should be since they live in the "Real World" and I spend my days here at home trying to lead a little Life of my own. What I am trying to explain here and now on my blog, is that there are some amazing people that I have met not long ago. Some amazing women that have become my friends and I know so much about each of them although we have never met, never spoken to eachother and heard our voices or felt a "real" hug. Still, I am as close to them as I am to my "real" friends. They are in many, many ways much more real to me than anything else.
These friends are all “in the box”.

These people exist. They make me laugh, they make me cry and they know just what to say when I don’t. We are an online community, and while the stigma of “cyber friends” has softened and become more acceptable in the past few years, there are still those who refuse to see online friends as being “real”. I can try to explain to my long time friend sitting in my house, that I feel so exhausted to the point where I can hardly sit straight….but she’ll never know. My "Spoonie" family knows…they’ve been there, the exhaustion, the lack of words and the pain is real to them and they know sometimes there’s just nothing to say to make it better. That kind of inspiration isn’t found from the parents of my daughters friends, the personal assistant that I have twice a week or with friends at a dinner party. There are days when I feel lost. I cry myself silly and I take a complete nose dive from the podium well meaning loved ones have put me on. Sometimes I can easily pull myself out of it, dust myself off and steal spoons from neighbors like a kleptomaniac. However, other times I throw a pity party for one, and upon being asked “what’s wrong”, I will give a laundry list of symtoms and what´s failing me. This tends to be one of those “watch what you ask for, you just may get it” moments where I describe details from how the last cramps felt like, how exhaustion actually feels and what it does to the rest of my family and how heavy my legs and feet feels and how difficult it is to walk and stand up straight.

My friends online are Spoonies. Sometimes we’re bedridden and sometimes we have a pretty ok day. Sometimes we cry for days and others we can’t stop laughing. As has been said before, we are members of a secret society of the sick, the price for membership is higher than any healthy person could ever imagine and once you’re in…you’re in for life.
My friends live in a box. You can call it a computer. I call it a lifeline.