It is a thing that is with you all the time and never leaves. This nagging thing, never leaving you alone. Sometimes it’s lurking in the shadows and sometimes it’s loud and right in your face.
But at all times it’s lonely.
It’s lonely when you get invited to an event and you can’t go. It is lonely when you hear about an event and realise you have not been invited, probably because you always say no. It’s lonely when people insinuate that you are lazy, or that you should be trying harder. It’s lonely when you have tried a hundred different things to feel better but none of them seem to work.
I personally have a group of loving and supporting friends and family They cheer me on, they try to understand me, they want to help me. But they can’t.
However hard they might try, this battle is just for me. A battle with my body, a battle with my mind. A battle with the world around me.
I am tired of being tired all the time. I have forgotten what feeling good feels like. I often want to give up, but somehow I keep facing every day. I keep trying to find ways to feel better. I keep trying to still lead a fulfilling life. I keep trying to be a good mom and give my daughter all she needs.
I am doing quite a good job at it too. But then there’s the loneliness.
It’s always there, waiting. And out of the blue it strikes!
Don’t ask me why, I don’t understand it myself. So how will I explain to others?
I am disappointed with my body, I am disappointed with the lack of energy, I am disappointed I can not be more active and do more things with my daughter, I am disappointed I can’t keep my house clean and cook food every day. I am disappointed I can’t go out and do “fun” things, like go to the movies or go to a concert.
At the same time I am proud of all the things I have achieved, al the things I CAN still do. I feel loved by all the friends and family around me, who love and support me.
But in the end, I still feel lonely.
The only thing that helps me deal with the loneliness is talking to fellow chronic illness fighters. People who live like me. People who feel the same every day. People who don’t need any explanation from me, because they get it.
I can reach them through my mobile or through my laptop. I don’t even have to leave my bed. They are up at weird hours like me, and there is always someone to talk to. They don’t get upset if you fall asleep in the middle of a chat conversation. And they only need half an explanation.
They are my fellow warriors. They are my support system. They are my sanity. They make me feel just a little bit less alone in this battle.