It’s what I have, Not who I am.

I don’t write often about my illness I believe it’s one of those things I have,  yet  I refuse to allow it to define who am I or the life I lead. Yet at times it takes victory over my will.

How do you explain to someone you are in constant pain. That your body aches so deep inside at times you feel it is tearing at your soul.

I try to follow the philosophy of no hate yet I hate the genetic makeup of my body which has become the breeding ground for my illness.

Doctors cannot even agree or decide on a name for the evil in my body. To some it’s Myalgic Encephalopathy to others it’s Chronic Fatigue Syndrome. To me its evil simple as that!

This illness I do call Myalgic Encephalopathy (M.E) has taken so much from me. My love to dance, my love of sport. All lost in the frustration the pain.

Some days are better than others and I have learned the value of the good days. I am also aware that others have it so much worse. Yet at times I just want to scream. As I lie awake into the early hours of the morning praying for sleep yet wide awake from pain it is then the will to smile with bravery is lost. It is then the tears will fall. In the privacy of the sleeping house I question God. The whys, the how’s come to invade my mind.

I want to believe that all things have a purpose but this illness leaves me at a lost. What purpose does it have?

Yes I have learned the value of time, yes I have learned the need to slow down and smell the flowers. But still I look at what is lost. How I wish I could run around the woods with my daughters, how I wish I could lace up boots and join them on the ice. How I wish….

Yes I know I have a lot to be grateful for, the slowing of my body has enforced the quickening of my mind. The words I never had time to write are my escape from the endless nights of pain.

Yes I made not be able to run with my girls but I can spend time in cuddles or enjoying the pleasure of sharing a good book.

Yes life is different, but can I see the blessings of it.

While in a dream I would wake up tomorrow free from pain I know that whatever tomorrow brings my illness is what I have, not who I am.

5 thoughts on “It’s what I have, Not who I am.

  1. I really can’t wait to see you in May and hug you and never let go. I wish I lived closer to you I would hug you every day! Also, will your whole family be going?

    • I wish you lived closer or maybe I could live by the sea. I would like that. Yes all of us are coming in may. You get to meet my brood of four and my darling hubby. Don’t hold that against me. Xx

  2. We need to stay in touch. We have so much in common. Thank you for the comment you left me on my article about guilt & parenting with chronic illness.

    I’m truly heartbroken to hear about the death of your daughter, Livvy. We lost an unborn child and I live with that loss every day. I can’t imagine what you go through. Big hugs!

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