I don't want to list the symptoms and the challenges here; I don't want to dwell in the gloomy shadows of my illness. I sit here talking to my computer and putting positive words on my screen, surrounded by as much beauty and joy as I can cram into the little corner of the world that is accessible to me. I fill my cup, battered and twisted and dented and broken and leaking as it might be, but I fill it until it can leak, until it overflows with as much joy as I can muster. I keep filling it with joy so that it's constantly full. Then when I don't have the energy to fill it, the twists and dents hold onto little drips and dribbles so I can refill it faster tomorrow.
My joys are not the joys of a person who is fit and well. My triumphs might not be of the Everest climbing gold medal winning variety. My victories might not be of the irresistibly sexy sensual female variety. My cooking and loving and care-giving (which once defined me as a proud and happy wife and mother) have had to be set aside. My joys are of the week long miser-storage of energy and pain levels so as to be able to draw. My joys are of lying in my bed looking out at the riot of spring turning to summer in the countryside I love. My joys include warm dog snuggled against me under the blanket, or the total trust and love of the parrot I adopted climbing on my arm and asking for his head to be scratched. The fact that the best way to win a parrot's trust is to sit quietly with them for weeks is a blessing; I can do that. As long as I can "sit" the way I have to "sit" in order to stay comfortable - it's a handy shorthand to refer to it as "sitting".
Everyone around me seems to know best what I need to do for my health. I am not allowed to just simply be happy doing what I'm doing in the moment right now - whatever I'm doing other people expect me to do something else instead - "If this makes you happy, that will make you happier."In the guise of trying to help, they put a pin in my happy and remind me of the symptoms and the pain and the limitations that I was successfully thinking past and putting aside in order to be happy in the moment I was in. That can be as simple as "Oh you're looking better today, you must be getting well." What's wrong with that? I have come to terms with the fact that all improvements are either gradual or temporary; this does not mean that I don't enjoy them when they happen, nor does it mean that I am choosing not to get better. When the good days happen, I don't need to be reminded of the bad days. When the pain goes down to 2 - 3 on my personal scale and I can do things for a little while, I know there will be payback, but that joy is so rare that I have to catch it as it flutters past on gossamer wings and hold it gently until it flies on again. I do know my limits; I won't borrow spoons for joys when I have to save them for necessities. I'll squander a few on joys as you would spend a fiver on a sweet treat for a sunny Saturday when there's nothing else to save them for though.
Looking as normal as I can when people are around me is a part of that. I don't want to "act ill" because I am not just the illness. I hide the clutter of disability aids as much as I can. I hide the illness and the tiredness and the pain and the allergies and the reaction to light as much as I can. I spend my energy "acting well" because I want my brain to register the positives and forget the negatives. I want you to see me and not the illness. Every day, moment to moment, I want to forget that I am ill as best I can. I have always done this. In the moment, interacting with my social world through the computer, I am not seen as the blob in the wheelchair. You see my face - which won't yet break a camera - and my eyes. Not the angle from which the photo was taken. Every day is a no make-up selfie that sticks a middle finger up at M.E. and shouts expletives at it. It won't win; it won't stop me from being me. I don't need to be reminded that I am ill from the comments, actions and reactions of the people around me. The illness itself does that, I can't ever really forget it although I can choose to ignore it.
Then the thunderclouds of the current political climate roll in. Those looking in at my little world from outside say "If she's happy, she's not as ill as she implies and doesn't need the amount of benefits or care she gets now." Actually I need more direct care, more stability, less financial uncertainty and a lot less stress. I need these things provided for me because I don't have the ability to provide them for myself. I need these things to be provided for me by a caring society because it is not my fault that I can't provide them for myself. Why should I be punished for being ill? Why should I be punished because a tiny minority of people fleece the system? Why should I be punished because in trying to fix a system that wasn't broken, the government broke it? Why should I be punished for the sake of political propaganda? I'm not lazy, or a malingerer, I didn't choose this life. I wouldn't wish my life on my worst enemy; not because I'm not happy, but because of what that happiness costs me to find. It is not an easy life-lesson to learn that no matter what happens, I can still choose to be happy. In spite of the illness; it's robbed me of so much. I won't let it take my happiness, and you know what? I won't let bureaucracy or society take it either.