Poetry

Last night I read My A to Z of M.E.  Well done to Ros Lemarchand for highlighting this dreaded disease. I just hope that Non ME people will read it and get some insight into this illness.  The book is a selection of poems written by Ros who is herself and ME sufferer.  I could relate to all the things she said.

Reading the book reminded me of a piece I wrote several years ago before Emily was born, it still holds true, but of course I now have the addition of not being able to do the things I would like to do with Emily.

I’m NOT Lazy

Why does everyone assume that I am lazy or can’t be bothered to do things?

If only they knew what I would like to do, but don’t do because I am not able, not just because I don’t want to.

I’d love to be able to walk for miles, go swimming, have a night out, do my own shopping, go to work, drive my car or clean my house.  None of theses things are special they are every day things to most people, but for me they take a lot of effort and cannot be managed every day.  People do not seem to be able to accept that I am ill and not able to do the every day things they can do.

If I try to lead a ‘normal’ life, eg. walking, shopping, cleaning, I suffer with fatigue, pain, dizziness, headaches, sore throat and many other symptoms too numerous to list.  I need regular rest and to go to bed early, this is not being lazy it is how I survive.

I am not a lazy person, before I was ill, I never sat still!!  I would like nothing more than to be able to keep busy all day long, it is so boring not being able to do things and is very frustrating.  I watch the dust piling up and the ironing that needs doing.  I hope for a good day to get things done, but know if I do them I will feel really ill again afterwards.  People do not realise when they see my un-cleaned house or pots waiting to be washed, that I do not leave them because I’d rather be doing something else; I have to leave it because I do not have the energy tackle it.

When I tell people I do not work, they assume it is my choice, and that I want to sit about at home all and they envy me.  If only they knew how desperate I am to work, to earn some money, make some friends and feel I can do something.

I am not lazy, I just have ME.

And another I wrote using the word Myalgic Encephalomyelitis to describe some of the symptoms and feelings related to the illness.

Muddled

Yawning

Anxiety

Lethargy

Giddiness

Irritable bladder

Confusion

Energy loss

Nausea

Crying

Edgy

Palpitations

Headache

Anger

Lifeless

Obstacle course

Misunderstood

Yo-yoing

Enlarged lymph nodes

Languor

Intolerances

Tinnitus

Isolated

Sore throat Misery Yogurt intolerance Aggitation Loneliness Gastric upset Irritable bowel Clumsiness Earache Neck stiffness Concentration difficulties Effort Pain Hypotension Appetite changes Long term sick Oppressed Mood changes Yearning for recovery Erratic Leg stiffness Itching Tiredness Impaired Sleep disturbances