|
Chronic Fatigue Syndrome
My Story It may be a syndrome but it's real.
© Hillie 16 October 1996
|
||||||||
|
WHAT'S HAPPENING TO ME?
I went to tell my husband, who was rummaging around in the garage, how I was
feeling. As I walked I felt worse and worse. Suddenly I could hardly stay
upright. He helped me inside into the bedroom and I became hysterical because
of the extreme vertigo, breathlessness, thumping heart. I was screaming "Jesus,
don't let me die." I was terrified out of my wits.
My husband carried me to the car. When we arrived at the hospital, I threw up
into the gutter. I felt decidedly humiliated and sick. I was checked but it was
a hospital dealing with pregnancy, gynaecology, etc - the wrong place to be. So
we went on to another. I was taken to Emergency - Xrays, an ECG (where they
discovered a murmur), a checkup - nothing showed up. I was frightened. Three
doctors checked on me.
We went home hours later. A neighbour was minding our children. I think it was
close to 10pm when we got home. For weeks afterward, when I had dizzy turns I
would become agitated and immediately want to hop in the car and go to the
hospital. Hubby would calm me down and convince me it wasn't necessary. I was
so fearful of a reoccurrence of "the attack" and fearful of insanity.
I was teary, depressed, felt I was trapped in my body. I would sit at the
dinner table and have disassociation / receding feelings as if I wasn't a part
of the group. At night I would hyperventilate with panic attacks; get up
sweating, terrified. I would have bad dreams. I'd try to pray, curse the devil,
etc. It didn't even touch the "illness". I was frightened to actually go to bed
for fear of what sleep was coming to mean - insomnia, heaviness, fear of the
darkness.
A friend came over and talked about how she had run away from her family (of 3
at the time). Afterwards I realised she had alluded to mental
breakdown. Maybe that's what I was going through ?!?! The whole time I thought,
Maybe tomorrow I'll feel a lot better. It wasn't to be. Not for some time,
anyway.
The chronic fatigue was unbearable. It was irresistible. It couldn't be
ignored. Sometimes I would be in bed by 5pm after having slept or tried to, for
part of the day already. This was often impossible because of my young
children, although the eldest was already at school in Grade 1. Looking back, I
should have gone on retreat for 6 months (!!) and rested. But this was, of
course, a pipe dream - impossible. Now I know that if a CFS sufferer can rest
immediately after becoming ill, there is more chance of complete recovery. Long
stretches of rest after years of illness often have little effect.
My reaction to the diagnosis? As I said: panic. And this lack of relief caused
me to fight the illness, to push through the fatigue, thinking "maybe this way
I'll get better" but thus causing the symptoms to exacerbate.
In March 1986 we shifted house. We put our second child into preschool. The
house
was bright and cheery and airy compared to the previous house which was tudor
style, huge - 2 storeys, 12 rooms and huge stairs, hallways, etc - dark,
forbidding. I had loved it on sight but two months after moving in I got sick
and
I hated it after that. I saw a ghost in every corner!
We thought we were here to stay in our new house but the church we were
involved with asked us to join them back in New South Wales, 4000 kms across
Australia. In June 1986 we travelled back. I was 2 months pregnant with my
fourth child.
A friend of mine was upset with me when one day I opened up to her and
said how worried I was about being pregnant and that I wished it wasn't so
since I was so ill. She was upset that I could be so negative. All I needed was
someone to talk to and offload on. Needless to say, I never shared with her
again of my feelings on any subject. She had no idea what I was going through
and was one of those super-positive people that sufferers in the early stages of
M.E. can well do without!!
On arrival at our place of residence in NSW it was snowing. We lived with
friends for a few weeks before moving into our new rental home. (Here, as
summer came, I suffered terrible hay-fever, weakness, depression.)
Some of my symptoms seemed to lessen a bit with my pregnancy, although the
fatigue was always there. Here I had a test done for viruses - no Coxsachie
Virus but yes, the Epstein Barr Virus showed up (Glandular Fever). I think I
contracted Glandular Fever back in 1978 when I became extremely ill but had
felt I bounced back. So when
the test was done in 1986, looking back on it now, I think the year with CFS was
a re-instigation of EBV titres which showed up in the severe relapse I had in
March 1985.
December 10, 1986. At 2.30pm my waters broke after a few
contractions. I tried to ring hubby at work but he wasn't there. He got back
home fairly soon, however, after receiving my urgent relayed message. We left
for Lithgow for a 30 minute drive to the hospital. At 3.57pm my youngest was
born. I
just made it - I had been trying to resist pushing in the car. He was a
beautiful, bonny, cuddly baby and squalled his lungs out at birth.
I was very depressed after the birth and had weird "turns". I talked to the
midwife but she couldn't help in any way. A few days after arriving home I
started to haemorrhage. So back in hospital for a curette. I lost two and a
half litres
of blood and heard the nurses rush around my bed hurrying to do the
transfusion. I saw that famous "tunnel with the light at the end". I believe I
could have died at that point. But my son was with me and, I believe, a key
figure at this time in my life. I had to breast-feed him with splints on both
arms. He was my motivation to get up in the morning and live through each day.
I had recurrent sensations of dying while in hospital. I would stare out the
window at the far end of the ward and pray to God I wouldn't die. I had severe
hypo attacks and looking back now I feel it would have been the hospital food,
namely icecream as well as my suffering from anaemia. My blood pressure was
very low, too. My family would visit but I always
felt that they didn't understand what was going on with me, how serious it all
was. Sometimes it helps if someone will just say, "I'm really worried about
you" rather than putting on a brave face and not asking any questions. I had
difficulty walking to the bathroom and getting dressed on the day I went home.
For years after the transfusion and anaesthetic I felt devoid of energy and
thought I was going crazy. Breastfeeding the baby gave me a terrible hormonal
reaction and I would look out the window at the trees, feeling weird,
depressed, listless and devoid of hope. During this time I did little on the
church scene because those times I contributed made me feel worse. I laid
pretty low with my musical talent.
September 1987 was the month my dad died. We had been up to visit in February
and he had seen my two month old. I am so grateful for this. While at home
for the funeral I again had my "turns" - dizziness, extreme agitation, fear,
panic attacks. How I coped with the burial and memorial service I'll never know
but I was the pianist for the service and also played a solo for my
dad. I'm glad I did that.
I was able to have some help in the home from the church. No books had been
written on CFS and literature was non-existent so it was to be understood that
there would be few who understood this illness. In 1987 it was just beginning
to be addressed. Around this time there was a decision made to move the church
group up to Queensland. I was over the moon at the thought of being with my
mum and dad by January 1988. But of course my dad died just prior to our move
and he would never see my children grow up as my mum has.
We packed up our family once again. Each move we made after I got sick affected
me, of course. It weakened me considerably (although I put on a brave face)
and, I feel, aborted a lot of opportunities at getting well permanently. We
moved nine times since I became ill (this includes a move to a caravan park and
a
motel while looking for housing).
We didn't have a home to go to so the children and I stayed with my mum while
hubby stayed with friends looking for a house in our new city of residence. The
heat and pollution exacerbated my symptoms and I felt extremely weak coping
with that and the kids on my own and the uncertainty of our future housing
situation.
We ended up staying with friends who very kindly took us all in for 9 weeks.
During that time, two of my children were at school, the other two at home. All
six of us stayed in one room. During this time I had a complete breakdown
emotionally. I was frustrated with my illness and therefore with my husband and
kids and with having to live with ten people, in spite of their generosity and
patience. I fled with three of the children to my mum. I never did tell them I
was escaping when I arrived.
We finally found a house to rent, stayed there for approximately a year, then
bought a house on a third of an acre. This house was a godsend and we have
lived here now
for eight years - the longest we have lived anywhere since our marriage
nineteen years
ago.
But I've found acquaintances and so-called friends more difficult to cope with.
People
are impatient with my "ok" when they ask, "How are you?". Then they reply, "Oh,
just ok are you?" Then I feel obliged to give them an update on my CFS. This is
very awkward when they're super-positive. People don't seem to realise that in
the chronic stage of CFS it is a different scenario than the acute stage when
the syndrome first hits and you are extremely unwell, as with post-viral
fatigue and its symptoms. Or they ask, "How are you
now
?" Don't they realise things are up and down from day to day, from hour to
hour? The chronic stage does mean ups and downs; a possibility that you could
be worse this time next year; your symptoms could be different next week; you
could feel worse this afternoon although ok right now and vice versa.
This leads to the feeling that you are unreliable, uncommitted, non-committal.
It makes you fearful, discouraged. This makes you sicker. It can make you
panic, feel worthless, feel useless. It narrows your life right down. It is
like living out the life stories of the hostages in Beirut during the '80s -
your life changes in an instant - you are imprisoned - and as release comes
(if it comes) you have a different life to "come home to" - things have changed
- you have to start a whole new lifestyle that is nothing like the one you left
years ago. No more fulltime work, no more top-to-toe maintenance of the home
and kids, no more zestful ideas for outings and parties and entertainment and
day-to-day fun and frolic!
The marriage comes under tremendous strain. You try to act the part at first.
You go for walks but "pack it in". You say, "I'll drive" but have to stop
because of vertigo. You decide, "Yes, we'd love to come" then have to cancel.
You are asked by hubby to make a decision (or reprimanded for not being able
to) and mumble away in your beard. The tears flow endlessly for many long
years. The energy for joy and merriment and laughter has been sucked away long
ago down the plughole.
Your loving man becomes impatient and says many things you're sure he wishes he
hadn't. He has a life, too, he says. He groans and moans and yearns for better
times but you can't help him because you can hardly help yourself. The
statistics are high for breakups of marriages of those with CFS. A friend of
mine divorced after suffering with CFS for seven years, married to a man who
gave up on her and his
son and walked out of their lives for good because of her illness. And he was a pastor!
People can't work out why you always get sick before doing something important.
"No", I once told a sister, "It's not demons. It's not necessarily spiritual.
We're human." It is stressful getting out there again and being active. It
takes endurance, perseverance, energy.
I am a pianist. I no longer enjoy playing because I played many times while I
was ill and used up my reserves of energy. It's difficult to convince people
that it's not all "in your head", that you are not a malingerer and that even
the best desires to get up and go do not make your body work. Something is
wrong in the energy stakes and it is not a pretense. We are not lazy.
To those who wish to know, really know - I say, don't jump to conclusions.
Listen, really listen. Don't offer advice unless it's asked for. If an M.E.
person says, "I'm ok" and not "I feel great", let them be. They are simply
being honest not negative. And be especially aware of the extremely complex
dynamics that are at work in their lives, influencing their spouses, families,
relatives, friends. This is no simple matter of saying, "Pull up your socks,
you sluggard." It is not easy fixed.
There needs to be understanding, encouragement, compassion, empathy, an ability
to let these people be, to let them be who they are in their illness, to be
given permission by those around them to be - whether it's ill or happy or sad
or depressed or whatever. This may seem extremely negative to those of us who
are of a religious bent. But allowing these people who have CFS to have it opens
the door to the future, opens the door to wellness. Why? Because the pressure
is off - the pressure to perform when extremely fatigued and nauseous and ill;
the pressure to talk coherently when extremely confused and fogged in the
brain; the pressure to walk when legs are aching and wobbly; the pressure to
hang up washing when fingers won't hold the pegs; the pressure to sew on
buttons when doing fine work flew out the window years ago.
When you have given for years
You can tough it out, ignoring symptoms at the risk of getting worse, or you
can check out every little quirk, at the risk of hypochondria.
You can shop for miracle cures at the risk of harming yourself, or you can
trust one doctor's judgment, at the risk of selecting unwisely.
You can keep your ailment secret, at the risk of deception, or you can talk
openly about it, at the risk of self-pity.
You can ask friends for help, at the risk of becoming a burden, or you can hold
fast to your independence, at the risk of isolation.
You can insist that your family treat you as normal and healthy, at the risk of
denying them release for their own worries about you, or you can let them
protect you, at the risk of becoming dependent and childlike.
You can strain your body to its limit, at the risk of harming yourself, or you
can play it safe, at the risk of becoming an invalid.
You can live in terror of degeneration and death, at the risk of being
immobilized, or you can look upon each good day as a special dispensation, at
the risk of smugness.
You can insist on controlling the course of your life, at the risk of
frustration, or you can "go with the flow" at the risk of passivity.
You can be angry about your fate, at the risk of bitterness, or you can focus
only on your blessings, at the risk of self-delusion.
Diffuse symptoms that come and go over a period of time
Attempts to find psychological or circumstantial causes for these symptoms
False or partial diagnoses
Determination to make the symptoms disappear by changing habits or behaviour
Strained relationships with family and friends
Stress that is often not perceived as stress
Changes in mood and personality
Physical examinations and procedures that may be redundant, unnecessary or even
harmful
Different and sometimes incompatible diagnoses and remedies from different
specialists consulted
Relief at having an answer that seems definitive.
...rest and you'll feel better
ECG
Chronic fatigue, difficulty in speaking, memory and concentration fog,
hyperventilation, panic attacks, depression, breathing problems, blurred
vision, extreme nausea, disassociation, tinnitus, low blood pressure, weak arms
and legs, food allergies and intolerances, heart palpitations, insomnia.
Chesty, phlegmy cough when weather changes, inner trembling and nervousness,
weakness, headaches,
difficulty in cognitive function, cystitis, aches and pains, colds,
viruses, low blood pressure, restless leg syndrome, IBS (Irritable Bowel
Syndrome), lactic acid formation in muscles
when active, reactions to some medication
whether
natural (i.e. vitamins) or chemical (i.e. antidepressants, antibiotics), pins
and needles in extremities, low-grade fever, exhaustion from day-to-day
stimuli including car trips, caring for family, showering, dressing; post-exertion exhaustion.
written before my general improvement in health 2004/2006 Update on Living with CFS Hillie's ArtMart - my art is healing for my soul
|
|
||||||
DIAGNOSIS
|
© Hillie Dijk - Regularly updated
This document may not be translated, duplicated, redistributed or otherwise appropriated. |