Random Thoughts

“He who conceals his disease cannot expect to be cured”

Ethiopian Proverb

I started this blog back in April 2007 when I did not know the full extent of what was wrong with my body. I was searching and angry. So what has changed??
I am rushing out the door to do a hundred things for Christmas but will be thinking about this so I can post it here. In the meantime I hope your Christmas is not too hectic and you get to share the love.

I'm not alright

Sometimes I get so sick of pretending that everything is alright.
How are you? Good, good, How are you? Good thanks!
Well guess what I am not good. I am in constant pain and living on pain killers and still I feel pain and sometimes I can't even walk up the stairs and my hips ache all the time and the muscles in my upper arm are swollen, my eyes are dry and my tongue is burning, I drop things, I can't chop the veges without difficulty and everything seems like a struggle but I go on pretending that everything is alright.

Why? Because people do not want to know.
Who am I pretending for? My family, especially my kids and my mother.
Hi, how are you? Fine thanks for asking.

"Changes, changes everywhere..

but if you just sit and stare...
you stay the same!" Children's song often sung on PLAYSCHOOL

Well I know I don't want to sit and stare and change is a constant. I have embraced the changes with only a few stamping and 'angry' days. I think I have done well but there is no one to praise me. So well done me!
I actually enjoy my new limited life and am constantly busy (mostly on the internet) and usually feel there are never enough hours in the day and still lots of things I would love to acheive. I am thinking of an ebook, some ezine articles, a children's book including the illustrations, some online education with "proper qualifications", modifying yoga for chronic pain sufferers, finishing a guest blog, painting a picture, etc etc.
I got momentarily sad this week when the specialist told me there was something wrong with my heart, because there is so much more I want to do. Okay it use to be dance and party and walk and travel - all things with my kinesthetic loving body (do you know about types?) - and yes I use to be a dancer but now I love my changed life. After all who wants to stay the same. So embrace the changes and by the way CONGRATULATIONS and WELL DONE to all you have done regarding not being defined by your disease. Please leave me a comment cause I would love to hear from you.

Are you buckling under stress?

One of many versions of The Scream, painted in 1893 by Edvard Munch


Well there is a test, or many, if you would like to try one.
The one I did is free and takes about 4 minutes and you get the results straight away and you don't give your name or sign up.

My overall emotional well-being, on a score of 1 to 5, is 3.44 which says I am stressed, almost very stressed.

The Quality of Life Score measures my satisfaction with life, including overall self-esteem, health, friends, family and work. 2.9 extremely stressed.

The Symptom Distress Score which measures my symptoms of depression, anxiety, and hostility says I am well adjusted - 4 out of 5.

The Level of Functioning scores how well I get along in the community. 3.63 which says I am very stressed.

Apparently, Behavioral Health Concepts, say I would benefit from short-term counseling with a professional counselor and that "proper rest and exercise, relaxation strategies, and religious faith" also contribute to emotional well-being.

What this all says is while I am not my disease it obviously has a big effect on my stress levels because it is the thing in this whole measuring that I can deal with but not "fix" (I have an incurable disease).

You see, you cannot see.

This is not my disease - it does not belong to me - I'm not my disease

You cannot see what is going on inside my head.
You cannot see what is going on inside my body.
I see this as a plus - all good.
This way at least if you meet me in the street you will not know.
I can pretend, keep up appearances.
You see I am not my disease.

Oil on canvas by Portrait of a Blind woman by Diego Velázquez

Disease by Dean Rands

It tears me apart to say the words
To think the truth for just a second
Because then it's real - not a lie
And I'll have no choice but to forever cry

But still it's something I must face
And I must fight - win or lose
Because it's there - inside of me
Hidden in my skin - hard to see

I'm truly scared of what could be
Of what lurks beneath my skin
It may be hard for you to know
Thats because I cover it with a show...

Please read the rest of this 18 year olds poem here at a poetry community site called Poems and Quotes.
P.S. Dean. I tried to find you, even tried to register so I could get your okay but could not??? Hope it is okay?

A great lady once said:

“I have come to realize more and more that the greatest disease and the greatest suffering is to be unwanted, unloved, uncared for, to be shunned by everybody, to be just nobody" Mother Teresa( 1910 – 1997)


Mother Teresa was a Catholic nun from Albanian who founded the Missionaries of Charity in Calcutta, India in 1950. For over 45 years she ministered to the poor, sick, orphaned, and dying, while guiding the Missionaries of Charity's expansion, first throughout India and then in other countries. Following her death she was beatified by Pope John Paul II and given the title Blessed Teresa of Calcutta.

2005 Southeastern Eucharistic Congress

By the 1970s, she was internationally famed as a humanitarian and advocate for the poor and helpless, due in part to a documentary and book Something Beautiful for God by Malcolm Muggeridge. She won the Nobel Peace Prize in 1979 and India's highest civilian honour, the Bharat Ratna, in 1980 for her humanitarian work. Mother Teresa's Missionaries of Charity continued to expand, and at the time of her death it was operating 610 missions in 123 countries, including hospices and homes for people with HIV/AIDS, leprosy and tuberculosis, soup kitchens, children's and family counselling programs, orphanages, and schools. More at Wikipedia

is this the way it goes?

I have not posted for a while,
often i sit and stare,
at the computer,
wondering what to say,
not knowing what it is all about anymore.

All the fight has gone out of me, all the rage.
Maybe i have turned into my disease.

Forgot my ABC's

I went to the immunologist after about 2 years and when he asked me what medicines I was taking I could remember the names but not the amounts! I felt like I had let myself and him down. I use to carry this information in my bag at all times, then I suppose the tablets changed and I have just not updated this information.

So remember your A, B,C's ...

Are you taking any tablets and medicines?

Bring them with you to the hospital and all appointments - even follow ups.

Carry a current list in your wallet.

The reason I started carrying the list at all times was after I was suddenly admitted to hospital and the same thing happened - I could remember what I took but not some of the names or amounts. This delays treatment and makes it harder for the patient to get the proper treatment. Also I was kept in overnight and the hospital kindly made up a script for my essential medications - very professional treatment, don't you think?

PHOTO THANKS TO jgibson3825

Dear Doctor,

Re: my diagnosis

I am writing to let you know I have finally been diagnosed and I was hoping you could give me back a few years.

I have had symptoms for over 10 years and I have finally been diagnosed with polymyositis. This is an inflammatory myopathy that causes muscle weakness and muscle pain in the muscles closest to the body. It is an auto immune condition.

I was diagnosed from a muscle biopsy. I have been to so many specialists and I hope that maybe you would remember me so that if someone else comes into your office saying they have muscle pain in their arms and legs, and a feeling that their muscles won't relax and difficulty with fine motor skills and an elevated CPK, that you take the time to listen and try and work with that patient to find out what it is. For 8 years no one offered me a muscle biopsy.

Merry Christmas,
yours sincerely,
G. N.

P.S. I am not my disease (but knowing what it is has helped me greatly)


TO: the endocrinologist, the pain specialist (who said it was fibromyalgia), the psychologist (that said I had cognitive defects and referred me to the immunologist), the neurologist (who gave up after finding out it was not MS) and the rheumatologist (who diagnosed and treated me for 2 years as having Sjogren's syndrome).

PHOTO BY bwavobunny

What I've learnt lately

Listen to my body and don't let others convince me otherwise. This is some thing I have learnt lately.
It was a simple beginning - the physio said "Do not let your pain go higher than a 5 out of 10". Seems simple, it is simple but it has had far reaching affects for me.

Firstly I realized I always push through the pain. How does this help me? It doesn't.
Secondly I allow other high acheivers around me convince me I should keep going. This also does not help me.
So listening to my body has had a profound effect - I feel in control. Yeah! I am not my disease. It is not controlling me. I am only taking pain killers as I need them instead of like clockwork. I am doing positive things to help myself :

• resting or changing activities when the pain gets to a 5


• walking - even for just 10 minutes a day


• going regularly to physiotherapy


• going to sleep at a regular time 'cause it does matter


• not pushing through the pain


• asking for help (to bring in the groceries or cook or whatever) when I need it.


• reading others inspiring blogs ... Living-with-MS ... help autoimmune ... fibro files ... Girl, Interrupted by Polymyositis

I am NOT my disease and neither are you.