( My Story Tony Robin Bulley Ngaruawahia Waikato New Zealand. )

After forty odd years of suffering Cfs (ME) (Chronic Fatigue Syndrome ) and in the last ten years fibromyalgia as well, I have come to the conclusion that to write about Cfs is as complex as the illness itself. My name is Tony and I was born in London in 1946, I immigrated to New Zealand when I was eighteen years old by myself on the Italian liner Flavia, via Dutch West Indies, the Panama Canal and Tahiti. This took about six week’s at sea to get here.

Around 1967 – 1968 I contracted (glandular fever.) I was in Auckland hospital for a long time due to the fact I was single and had no family to look after me, so the sister kept telling the doctors I needed more time, in all it was probably about two months I spent there. I remember the day I was allowed home, it was in the afternoon and I had to walk up the hill from the infectious diseases block to the top of the hospital and home. It was hot and sunny and I felt so weak and loss of energy and of course this was scary for me as I was on my own with the nearest family in Great Britain. Anyway this was the start of year’s of loss of energy, waking up feeling like I had not even slept, days off work.The best I can remember is having one doctor who would sign me off work for as long as he could squeeze out of the welfare, and put me on holiday as being depressed, of course I wasn't but he and I had no idea what was wrong with me. This illness has cost me thousands of dollars in lost wages, pain grief and a feeling of being useless.

In 2002 through the internet I found there was a Cfs (ME) group in Hamilton, which is about 14 kilometers from where I live in Ngaruawahia, and is the nearest large city to me. I went along to a few meetings and found there were people who had the same symptoms as me and worse and less, but it helped me to realize I was not imagining this illness, and in fact it was not only very real but also a very serious illness. Also it was a good time the New Zealand Government had at last accepted findings on the illness and declared it officially an illness. Well after years of struggle with some doctors treating me as if it was all in my head that was a relief to know, although over the years I had survived the neurosis of government ridicule and had in my opinion fought a good fight, especially when they decided to revamp the welfare system and declare a majority of patients were not invalids but sickness beneficiaries. That was one battle I won hands down thanks to the help of my local MP and my refusal to give up my civil rights to justice and bureaucracy gone mad, as it does from time to time. This year I started a website this one for the group and it has grown and grown and been revamped three times to where it is at the time of rewriting this in June 2006. This has now become the basis for my life’s work to design websites for free for community group’s world wide, after all what’s point of having talents if you don’t share them.

In 2003 was not a good time for me, my illness worsened due to stress, and I spent three spells in hospital that year for various things, the end year improved a bit but my fibromyalgia got worse, especially the pains in my lower arm muscles, and my Cfs was at an all time low with little energy to do anything of any substantial effort. Just to cut a piece of wood was hard and left me breathless and very tired. All in all this was probably the worst year for a long time on a scale of zero to ten id say it was about eight.

At the end of 2004 i completed a year at University and recieved my degree in Electronic Multi Media, the year was good but i ended up in hospital for the night after collapsing at university. I had   high blood pressure another pill to take each day. So 2004 was not so good been fairly sick start and end of the year again, on the good side had three poems published in Usa and Uk have added one here which was voted best of 2004 hope you like it, will add a link to my poems soon as I have the energy to do so.

Afraid 2005 is a blur can’t seem to remember anything of any outstanding importance at all, I guess it was one of those years where life just sailed along. And now here we are in 2006. This year has been so far average, my arms are playing up again, I get cycles of well and unwell, times I need to sleep a lot, more than I did. I find sometimes it becomes a mind over matter situation. Of course with an IQ of 136 my mind certainly outruns the ability my body has to cope with all the things id like to do. I hear of people who get depressed, I don’t think ive ever got really depressed, angry yes, frustrated yes, yes im frustrated this illness has robbed me of a normal life, has robbed me of the ability to have a normal job, to be able to earn a decent living, to take my family on a real holiday. At times I cant even remember who I am or where I am that’s scary, when you wake up in the night and have to delve into your memory banks to work out where you are and how you got there. Worse is when I drive sometimes I have no recollection of parts of the trip, thankfully this has gone for a while.

So what can I say, I have learned to adapt, learned to read the physical signs of my body, and stop when it says stop not later and suffer the consequences. I have adapted my talents to things I can cope with, this computer and website designing and computers on the whole. Its not easy , most days im fighting zinging in my head, pains in my arms and legs, lack of real energy like a normal person has, but deep down inside me im a person , my brain still functions, I have feelings and needs like any other person , just that my body will not comply with my brain to do all the things I want to do , I may be an invalid but im a human being , my body may be crippled but my brain operates same as anyone else in life , what am I ,(I am a Chronic Fatigue Syndrome Patient please know me before you judge me.)

The Choice Is Our’s

I sometimes wonder if we really care
Or just pretend and gaze with vacant stare
At all the death and pain in this life
Is it not our concern for others strife

Or do we feel we want to shout and cry
but in the end just walk on by
For their grief may be our day of regret
For what we left behind we cannot forget

Nor if we close our eyes and sit and pray
Without change today will be yesterday
Have we really become void and cold
Ignoring life just growing old

And if we stand and never say a word
What change will come for no one heard
And when we die and look back as we go
Will we be satisfied with what we know

That one small voice can become a swell
Creating paradise where once was h***