20 years and counting!

What have you been doing for the last 20 years?  Me I have been busy living with ME.  Here is my latest rhyme.

20 years with M.E,
20 years since things went wrong.
20 years since I lost me,
20 years, it’s far too long.

20 years of missing out,
20 years of feeling ill.
20 years of such doubt,
20 years, going through the mill.

20 years is too long,
20 years how can it be?
20 years of feeling wrong,
20 years of hell for me

20 years in this mess,
20 years without a break.
20 years, wish it were less,
20 years for goodness sake!

20 years of feeling rough,
20 years running empty.
20 years, I’ve had enough
20 years, that’s more than plenty.

My daughter asked me the other day how long I have had M.E, so I said 20 years, she replied that means you got it when you were 26!  Yep, seems like a lifetime and that’s the official time the real time is more like 33 years!  It’s a long time to struggle and not know what life holds or what will happen next, not that anyone one does know what is around the corner.  I know that I am far luckier than many who have more serious illnesses or have been cheated of life completely.

I’d love to be able to build a new life and make something of myself and do more with my family especially my daughter who we fought long and hard to have in our lives.  I hate that my daughter suffers for it too and struggles with accepting it and understanding what it means for me and her.

I hope each day that the next 20 years will be better, but medical progress is slow and it’s unlikely.

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