As young as Suzy was, her mind was
set on travelling. Although just 13 at the beginning of 2001, Suzy
holidayed with different friends and their families to Paris, skiing in
the Alps, the Canary Islands, and then in England with her own
family----- all in that one year. Even
after all this, she was thinking of yet another trip abroad with a
classmate and her parents at the end of the year.
Suzy had a lot of friends. She never had a bad word to say about
anybody and was good company to whomever she was with.
Then at Christmas 2001, age 14, she was struck down with worsening ME.
That Christmas, some months on from when she'd first experienced several
changes in how she was feeling (Suzy, being Suzy, kept these changes to
herself) everything suddenly gained a higher profile.
The symptoms Suzanne was experiencing up until now had included
variations in her behaviour, such as lapses in concentration and periods
of physical 'disinterest', but now they moved on to another level. It
became obvious that something serious was happening to her.
A nasty deterioration started to set in quickly. Apart from other
worsening problems that Suzy began to experience, she found herself
needing to lie down for most of the day since any activity, physical or
mental, was becoming impossible.
Less than a year on from the start of this bad deterioration, the
illness turned into a nightmare of the worst kind.
The months dragged by. For the first two years they saw Suzanne
deteriorating in her bed-bound existence, often unable to communicate
(let alone hold a spoon) even by blinking or finger movement.
By the time 8 months had passed
Suzanne could only manage to wake up for about 2 or 3 ten minute
periods----- if we were lucky ----- out of each of the two separate
hours in the day we chose to try and wake her. In order for this to
happen Mum or Dad had to spend 3 hours sitting quite still and silent in
the cold dark beside her bed.
Eventually (making it sound much simpler than the choice actually was)
we decided to reduce this procedure to just once a day instead of twice,
and to aim for one hour of time awake for Suzy between 7 and 8 in the
As before, Suzy would only wake up after Mum or Dad had sat beside her
bed for 3 hours gently trying, very occasionally, to coax her out of her
We gradually reduced this 3 hour period, but it took over 18 months
(until around June 2004) of painfully slow improvement in Suzy's state,
for us to dispense with it altogether.
Suzy's motivation for waking had always been that she was desperate to
try to eat (even though this wasn't always possible), as she was so
fearful of being tube fed as we were told must be the case----- just as
she begged us not to let her be hospitalised, as this was also something
we were facing.
(It's only by understanding gained from living with this condition that
our desperation to keep our daughter at home could be understood.)
Suzy was in a "living death" state for the first two years after her
illness became really severe. Many would still regard her as such since
her condition remains very sad.
Even up to around October 2004, two people in the room or one person
stringing more than three sentences together was too much for her.
Thankfully, things in this respect have now improved. Though the two
people are still mostly restricted to Mum and Dad, wonderful exceptions
have begun to happen recently for 10 - 15 minutes later in the day.
Suzy's life was, and still is (except for her fans no longer being
continually on), spent in a perpetually darkened, unheated, noise-free
room. There are blankets over the curtains---- despite it being a north
facing room; bedside fans are periodically on---- even though she only
wears thin short-sleeved T-shirts all year round and; ear plugs in-----
even though the room is in a very quiet location).
But this so sad picture of Suzy's existence has also been showing a
trend of, very inconsistent, improvement since Christmas 2004.
The fact that she can now manage a whole unbroken hour at nights for
eating without us having to sit beside her first, hardly seems anything
to shout about, but it's made a big difference to the last 12 months or
If we ever thought we were wrong in our refusal to allow her to be
admitted to hospital and declining the use of recommended drugs, we
thought of the awful experiences of some of our contacts. These have
cemented our belief that there is no understanding at all to be found in
Now, three years on after living with the illness, we know that there
are misjudgements about ME (particularly very severe ME) and early
doubts we had of these judgements have become completely vindicated as
far as we are concerned.
Looking back, although things are still terrible for Suzy, they are much
better than they were a year ago. Suzy can even listen to a couple of
tracks from a record and watch 20 minutes of TV most days, which was out
of the question up to the middle of last year.
There is a positive movement---- albeit inconsistent---- undoubtedly
happening in Suzy's condition. In fact recently it is happening
relatively quickly. We are just so frightened of when and where it
We feel this improvement has emerged because of our developing
confidence in being able to reject medical approaches to Suzy's severe
ME, and to the departures we chose to make from these conventional
1. No longer trying to wake Suzy twice a day.
This was a very difficult decision, which we knew would
be a controversial
one. But the fact that after a few months she managed
her hour awake without
us having to sit silently beside her, and that the hour
ceased to be broken,
reassured us that we'd done the right thing.
2. Forgetting about the concept of 'graded exercise'
We were certain that the graded exercise program Suzy
followed in the early
stages of her ME was a big mistake. We had no
hesitation in no longer sticking
to any kind of graded exercise routine (which might be
beneficial for those
patients with less severe ME). Instead we took the
approach of letting Suzy
do what she felt she could do----- which for nearly two
years was nothing
This is a second option we are convinced we made the
right choice over.
3. Stopping the involvement of psychologists
A third decision we know to have been the right
decision, was to stop the
involvement of psychologists in an illness we are
convinced is not psychological.
4. Choosing to see less (which eventually became nothing) of doctors
We eventually accepted that to us, the only safe path
was to manage Suzy
ourselves by following our own instincts. We had
become more and more sure
that Suzy needed as much of a stress free environment
as possible; an environment
we tried to ensure she got.
Public awareness of ME needs to be addressed.
Much of the treatment for the condition, where it is recognised, seems
centre on management of the illness.
Biochemical research into ME is so important to allow an understanding
of the illness that destroys lives. Evidence for gene malfunction in ME
sufferers is beginning to emerge, as well as evidence for other physical
factors, such as malformed and malfunctioning mitochondria (sites of
energy production in cells).
Research results are suggesting so strongly that there are physical /
biological reasons for this illness.
Funding and emphasis must be given to establishing the biological cause
of ME so that appropriate treatment may be given.
The ME Association and the registered charity MERGE are examples of
organisations involved in this research.
It is true to say, as we soon realised, that in cases of ME the more
severe your illness the more forgotten you are.