I don't know where I have gone. Who I am now.
Fibromyalgia and its band of not-so-merry followers have taken away the person I know as me and in my place there is this stranger. I'm not sure how I feel about this stranger. She kind of looks like me but sadder and she moves slowly and awkwardly. This stranger doesn't do the things I used to do so clearly isn't me. Is she?
I used to cook, sketch, embroider, walk, run, read, write, sew, keep to a schedule, keep a clean home, swim, dance, laugh, love, celebrate, go for long Sunday drives, have adventures and earn a living. I used to be someone.
The stranger does none of that. The stranger is no-one.
The stranger drags herself out of bed in the small hours because lying down has become too painful. She walks slowly and stiffly; no dancing, walking or running. Painful muscles, joints and skin, burning, freezing, tingling, painfully numb feet and hands. Clumsy, lacking in balance, dizzy and confused. This stranger is everything that I was not.
With hands that neither fully straighten nor fully bend, the stranger cannot do many of the things I enjoyed. The twisted fingers find that holding utensils, pencils, cloth, needles, brooms, books and more is excruciatingly painful and the results painfully disappointing. The stranger is often overcome by fatigue, crying out in agony, covered with rashes, head in the toilet, turning to dust. Who is this? This is not me!
I used to be the ever caring friend, the one who never said no when someone needed something. Even through my pain I would say yes and pay for it with more and more pain. Now I say no and pay for it with guilt and with the loss of people in my life. The roles have changed and it messed relationships up.
Apparently now I am the funny friend, the one who keeps others spirits up when they feel down. They soon become sick of me when I am in so much pain myself that I can no longer take care of that need for them. When I'm cranky and irritable and not even slightly funny I become the forgotten friend.
I'm tired of being at war with my own body, fighting the pain so I can appear normal and not offend anyone with my illness.
I want people to see what this has done to me and not to feel sorry for me but to know and understand and to realise that when I do something for them it's because I really truly like them, even love them and I really truly want to do the thing for them no matter the cost to myself.
I want them to feel that and know that despite the effort and physical cost and disappointments and energy lost, that they mean more to me than all of that matters.
I want them to know that driving, even short distances, is exhausting and painful and that if I do that to be in their company it means something. It means a lot!
I want them to know that typing hurts my fingers, the tendons in the backs of my hands, the muscles in my arms and it hurts my shoulders but that they mean more to me than that!
Most of all I want them to know that if I do have to say no, that it doesn't mean I don't want to or that I care less for them; it simply means that I have hit the wall, physically, mentally, emotionally and I cannot do anything at all. I want them to know that saying no is a hard thing for me to do and I will feel terrible for days and even weeks for doing so and that is because they mean so much to me.
I want them to see that I still am the caring friend and that despite my friendship and caring looking smaller from their angle it is unchanged from mine.
I'm tired of being lost, of not knowing what I can do. I still try to do the things I was good at and enjoyed before the stranger moved in and took up residence in my stead. But she cannot but I don't know what she can do.
