Sticky Blood-Hughes Syndrome Support

Hope and Dreams

Two plus two, two plus two,

I get a rythm in my head a holding pattern that feels me with fear

My hand settles into a rythm.

I'm sad and disappointed

I'm angry at my body, my blood and the world around me

Why are you so fragile that you qualsh my hopes and dreams?

Leaving me unfit, it seems, for any job i wish to do?

An ugly little scar inside a plain-sized head,

I could go somewhere in this life, but instead,

I sit here fighting off the demands that are shattering my every hope and dream

I've got to find a focus to keep from going mad.

3 Replies

This is really good, and from a meaningful point of you, just tells it how it is. A great way to express yourself.


Thank you, i think i just found expression via the written word helpful post stroke and figure some of the things i have written my help someone on here to.


hi Clare, i know it's soo frustrating and painful when your life changes without your permission. And you have every right to rage against it and then, before you become the anger, you must take control again. otherwise it has won. Before I became disabled with my APS i was 10 stone, reasonably attractive, dancing 3 nights a week, a very sociable person who worked, lived and loved life to the full. Now I am 17 stone and with the best will in the world that is not attractive, I can not dance anymore, I work but it's not easy and people have to make a lot of allowances for me and my crazy ways but I am still me and I have taken control of my life - I have chosen to laugh when things gone wrong. I have chosen to accept that there are things I can not do and I enjoy the things I can. I really don't like being as big as I am so I avoid mirrors but at least I can eat food without worrying about gaining weight-most of my younger years were spent calorie counting-as i'm already huge...see silver lining.

Hang in there, you will get there, hugs Sharon x


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