Sometimes I want to run away. I don’t know where I’d go. I just want to hide away from life. I want to run away; to run away from life and myself and my illness. I don’t want to be ill and I want to escape this illness.
I want to run away so I’m not a burden and so people don’t have to centre their day around babysitting me. My being ill has had such a huge impact on other people’s lives. They have to cancel plans, miss weddings, juggle their work day, quit their job… M.E. and I need to be considered constantly, be it with regards to what foods to buy, whether a certain air freshener could trigger a crash, whether or not the heating can be on, which holidays to book…
Sometimes I feel so pathetic. Like when I’m sitting in the window waiting for a friend to arrive feeling nervous and excited and nauseous and jittery. Or when I get myself in a pickle about what am appropriate outfit would be for a certain outing. I feel so far removed from reality that I don’t even know what presents to buy people for their birthdays.
I feel pathetic when people tell me to butt out of a conversation because it doesn’t apply to me. Where does that leave me? Am I to just cease from engaging in any conversation then? Because the only things that applies to me now are related to illness. Not jobs or interviews or mortgages or weddings. My opinion has become invalid because I don’t live in the real world. I remember a family gathering a few years ago. Everyone was catching up with each other’s latest news and I just crumbled. I had to leave the room. I had nothing to share. Nothing.
Every fibre, every tendon, every cell in my body is affected by M.E, from nail growth to hair production to white blood cells fighting off a common cold. And I hate the effect that has had on me as a person. I am scared and fearful of the future. But there are positives and I cling on to them. I have learnt to be patient and to not judge a book by its cover. I am learning that I am more than my illness, just as all of us are. I am learning to live for today because good or bad there will be no other day exactly like it.
I can’t run away. And I can’t hide either. Sometimes I wonder if this is what it feels like to be drowning; to be so bewildered by the prospect of the long road ahead that it becomes impossible to keep my head above water. So, as advised by a lovely lady via twitter, for now I shall stop trying to swim and just float here for a while letting the current take me in whatever direction it pleases.
My online friends, you’re my life raft. When my soul takes a battering you all pull me out of the ocean of illness for a breather and a hug and we huddle together in companionable and understanding silence until I’m ready to start the swim again. Even though I’m still so far from dry land you all bob along beside me in the life raft while I get back into my stride, ready for the next time the current gets too strong; ready to fish me out of the water again if I need you to.
We all have our moments and the downs are as essential as the ups. Running or hiding away won’t escape anything. So I’m gritting me teeth, leaning on you all and counting my lucky stars that I found you.
M.E. myself and I 
Just reading your fantastic blog and never noticed this before: the word invalid (without worth) has the same spelling as invalid (a sick person). Both come from Latin invalidus meaning weak. So it seems how society sees the sick person – without worth. So sad.
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I had never noticed that either! Wow. Doesn’t that say a lot about it all. Best wishes to you.
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