My story as a long term survivor of CSS


Gloria Pieterse, Ireland
December, 2006

As one of the long term survivors of CSS, Jane Dion suggested that my story
might be of interest. I was diagnosed with CSS 16 years ago, which means
I’ve probably had it for 18 years.

By nature I have always been fiercely independent, had a positive attitude to
life and dealt with things in my own way. I have striven to know myself,
take responsibilities, and generally be my own best friend and advocate.
I’ve never been particularly concerned about other people’s opinions of
me. Goodness, I sound horrible, but having been an artist I probably got away
with a lot.

So many people on the CSS are younger than me, have young families and
jobs to deal with, so that CSS comes as a dreadful intrusion into their lives.
I’m fortunate that my CSS occurred when our families were grown up and
settled. My husband and I were very happy and had a house on a lake in
the country which we loved and to which we intended to retire. It was very
rewarding. We grew our own vegetables, fruit and herbs. Jams, jellies and
herbal mixes were a part of life, and we even had wine from our own grapes.
In the late 1980’s I had a few bouts of what was diagnosed as bronchitis at the
time, then late onset asthma. I was then working with a cancer counselling
group and consulted a renowned homeopathic doctor who discovered my
many allergies and intolerances, and she was dealing with these. Then in
the early 1990’s I was hospitalized with pneumonia, bronchitis, pleurisy,
trachietis – you say it, I had it. After endless tests and investigations, which
included looking in the back of my eyes for parasites I might have picked
up in Africa!! and nerve and muscle biopsies, Churg Strauss was diagnosed –
an unknown at the time, and uncharted territory to the various medics
attending me, and it was initially thought that the peripheral neuropathy
in my hands might be carpel tunnel syndrome.

I found my hardest decision was to accept that I would be dependant on
chemicals for the rest of my life. When asked what the prognosis was
I was told that with the right drugs it would be unfortunate if I had a
recurrence. Flares were not part of the vocabulary. However two nurses
had heard of four cases in Australia and in 1996 when Ben Watt’s book came
out, I relaxed – there were other survivors! The med net notes I had got at the
time had been very discouraging. So this enabled me to get on with my
life. It is not in my nature to worry about future happenings – I’ll deal
with them when they come is still my creed.

Many of my problems really were self inflicted in not admitting that I had
an illness. I just accepted that every so often I was ill. Asthma, ulcerative
colitis, septicaemia (with MRSA) I just fought my way through them and
left them behind in order to get my life back to normal.

I also developed steroid cateracts, and had successful corneal grafts.
In 2002 I had to have an arthrodesis of my left ankle, which remains a
continuing problem, and just for fun had a collapsed lung later that
year!

My lovely husband passed away in 2000, and since then I have changed
my lifestyle. Conscious of my damaged immune system I avoid situations
where I would be most likely to come in contact with germs. I don’t
do hospital visits, large indoor functions or funeral gatherings. Sounds
anti-social but not really, just protecting me. Friends and family know
to stay away if they have colds or have been in contact with infections.
There’s always the telephone and the laptop!

I’m aware that this is not much use to those of you who have children
and dependants and cannot avoid such situations. Sorry, but remember
I am just talking for me. I dealt with my life myself – finding it
difficult to ask for help and not giving in to illness. I would make a
joke of it to others and would not admit to being ill – just being
unwell temporarily. Sounds a bit mad!

I assiduously kept notebooks during the years I was ill, with I think
an altruistic idea of publishing them or handing them over to the
hospital, but Ben Watt’s book coming out took that responsibility
off my shoulders and I had a glorious bonfire.

I do have neuropathy in my left hand and feet, and to a lesser extent
in my right hand. I do get pins and needles, overheating and that
strange cold feeling in my feet as if they are immersed in icy water.
I do also get the hot flashes. I’ve got used to it and just feel that
my personal thermostat is out of kilter. It happens for no reason
sometimes, or if I have been shopping or overdoing it. I just take
off a couple of layers of clothes until it goes away. I take
solpadine for pain when necessary.

I’ve learned to live with discomfort and finally, that I must deal with
pain before it becomes too acute. The vasculitis has become more
evident since the arthrodesis. I also have osteoarthrtis, one of the
many gifts of prednisone. So I was inclined to put problems down to
asthma and osteoathritis, not realizing that most of my problems
came under the umbrella of CSS.

Since getting broadband and finding the website six months ago, I
have discovered so much, and recognise so many of the problems I
had to go through on my own without advice.

The only area in which I feel I can help is to be in touch with as many CSSers as I can and reassure them that I’ve been there too. There
is life after CSS. The quality may differ but it is just as precious. And
these days so much is known and is being discovered, and with this great
Group to help, one shouldn’t be fearful.

However, I do feel that we must be disciplined with this disease.
I have monthly blood tests which go straight to my doc for checking.
When I have a flare I alert my doc who puts me on a fortnight’s
high dosage of steroids and anti-biotics if necessary. I also pay
a lot of attention to my diet, eating organically and avoiding the
things that may not be good for me, and take supplements and
vitamins. I have a nebuliser at home.

I’ve been a facilitator all my life, and find that still goes on to a
great extent. I’m probably the best sort of character to have a chronic
illness. I am a widow, family grown and for the past few years living
alone for the first time in my life – which I love. I’ve always been
a reader and lover of music, so I am surrounded by books and music.
I feel ‘I’ve been there, done that and got the Tshirt’. There is
nothing I have to prove to myself or anyone else at this stage of my
life, and I will help, counsel, care and advise where I can.
Not driving for the past few years too means that I am not rushing
around. And of course internet access makes the world a much smaller
place. People, friends, family come to me. They know I am always
there for them.

Poetry and philosophy have always been great friends of mine. It is
often through the writings of others that we can get a fix on our own
lives.