This poem first appeared in the magazine ME Essential and is reprinted with the kind permission of Julie Trilsbach and the British ME Association
By Julie Trilsbach
The old ME was lively and active and free
to do as I pleased- a real busy bee!
A Nurse and Leader, working full-time
a 40 year old woman-just in my prime.
Happy and healthy-enjoying my life
Loving my roles as mother and wife
Dog-walking, parties, family days out
Joining my boys for a fun kick-about
Helping with homework, school friends for tea
Family holidays spent at the sea
Meals with my husband, drinks at the pub
And occasional dancing at a night club!
Then came THE ILLNESS, that changed everything
I had no idea what the future would bring.
I researched and battled and tried to keep going
Searching for answers without really knowing.
The feelings of guilt and stress made me worse
I wanted to DO things -I was a Nurse!
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Exhaustion and nausea, weakness and pain
Brain fog and sore throat and daily migraine
Doctors and Physios -I've seen the lot
Any new "treatment" -I'd give it a shot.
For me, it seems that pacing is best
Small chunks of "doing" and plenty of rest.
Its all too easy to boom and then bust
I remind myself daily I have to adjust.
I grieve for the things I can no longer do
I miss the person I used to be too.
Life is so structured, routine everyday
Trying my best to keep symptoms at bay.
No magic treatment, no magic pill
But I hope that I won't always feel so ill.
I've let go of the anger and tried to find peace
In being, the present, and life how it IS
Enjoying a book and a good TV show
on "bad days" it ok to have to say "no".
I now enjoy watching the world go by
Taking pleasure in nature- a clear blue sky
I still have my husband, my two lovely boys
And life is now full of simpler joys
Julie Trilsbach was a busy wife, mum and Registered General Nurse/Manager before becoming ill with ME/CFS. After struggling to let go of the work that she really loved she continued to push herself until her health deteriorated to the point of being mostly housebound. She wrote this poem as a way of letting go of her old life and adjusting to the new. After years of trying to find answers, denial and pushing herself to live up to the expectations of others and herself, she has now reached an acceptance of the condition.
Julie enjoys being with her family and her cats and dog. She loves colouring and enjoys TV and reading in small chunks. Her tablet is her prized possession connecting her with others in similar situations, uplifting quotes and helpful articles on subjects such as Yoga, Meditation, Chakras and Healing. Her biggest change is giving herself permission to rest when she need to, recognising that she is not well and is doing the best she can.