Of All The Silly
Things
Of all the silly things they get
you to do, bouncing on a ball while you’re eating your lunch has to be the most
bizarre! Concentrating on your inner core, chewing while laughing has to be
worth more than just an orange on your activity sheet?
How can I tell my teenage girl
these people know what they are doing? That our government have our best
interests at heart? It is blindingly obvious they do not! These silly ideas may
look good written down on a sheet of paper, fooling people it will make them
better, but in practice it is life threatening and I do wonder if they had a
health and safety check on it. Before you all roll your eyes and let out the
exasperated steam of boredom. Bouncing on a ball while eating, honestly, it doesn’t
take Einstein to work out the equation for the consequences to that one.
You may ask me why we keep
listening to them. I’ve asked myself that many times. You have to remember we
are very desperate and we thought we were going to professionals in their
field, not a load of monkeys wanting to enjoy a tea party, paid for by government!
I’m not bitter, just gob smacked at the systemic stupidity!
It’s not the first time we have
been forced into activities that we don’t understand the benefit of. There was
that time they told me to get my daughter interested in the world around her. To
get her to move around the house, which they considered was the first step to reengage
with the world. You do this by doing the housework? They said it constituted an
orange on the scale of energy needed. They smiled at us as though we could not
understand the concept, and just needed to get on with it and they would be
proved correct.
First issue I have with this is;
housework – to get you interested in the world around you, really? My daughter
does not have OCD so what joy of doing daily necessities would she derive from
cleaning? OCD does figure in ME apparently, I suppose it depends in which area
of your brain that has been affected; after all it is a neurological disease.
They have always known it affects your brain, but do they understand the brain?
That’s the question, from my experience, no they do not! Only recently some
researchers have devised the right techniques to produce the imagery of damage
caused by ME. Not all hospitals have the right equipment though and then you
have to have the right person to understand the imagery.
Anyhow, for most young; bordering
on teenagers would not reengage in the world around them by housework. I have
to admit housework turns me off in life and against most of my family. I’ve seen
to many mould festering plates and smelly football socks.
Dust and chemicals are known to
affect ME sufferers, so I really don’t understand this, one little bit. I did
start to wonder about the clinic we were attending. The person telling me how
good this would be for my daughter looked more of a party animal than a home bird;
I don’t think she would be too impressed if she was given this to try, I think
she would look as stunned at the suggestion as we were.
Secondly they obviously did not
watch “Trust Me, I’m a Doctor” out of all the gym activities housework burnt
the most energy. The energy that would be used the most would be indignation
though! And this is never taken into account! I think I would feel belittled
and indignant if it was offered to me as part of the treatment for a disease
that offers more pain than when you have run a full marathon, by just going
downstairs! When energy is in short supply, do you really want to waste it on
housework!
Rosa had always been brilliant at
helping me out around the house. As a treat on a Saturday we would go out shopping,
as a way of me saying thank you for all her help. The sadness of this
particular suggestion brought home with a sledge hammer, how bad things had got
and how much M.E had taken from our lives as a family. Going into town was a
weekly treat, window shopping and then coffee and cake. Somehow these people
are blinkered, and don’t understand people or their lives.
She also has a dust allergy and
would sneeze; I wonder how much energy it takes to sneeze? I smile at the image
of their reactive faces if I wrote that down on her daily activity sheet? I
would say five sneezes would constitute a red activity. I wonder how that
constant allergy would affect her body though.
I know it’s not for the fact she
wanted to withdraw from the world, I know my daughter, but that she is simply too
unwell. They insisted though, that it was the same for all CFS patients, it was
part of the illness this deconditioning malarkey. I don’t buy it, but they
should know better and in the beginning I was not listening to the people who
had been through the system before us. The professionals had clouded my
judgement about them. We were different and how could movement, talking,
enjoying life make you ill? If you are happy and look to the future, it stands
to reason that you will be OK. Little did I know back then!
Threading beads was another
activity and when Rosa, then 10 asked what the point to that was, we got a
reaction, which enthused the psychiatrist to write franticly down in her notes.
We looked at each other with a silent conversation carried through widening
eyes and wobbly eyebrows. These conversations normally take place when we meet
with the medical team. We would discuss afterwards what a criminal psychologist
would make of them all.
Let me just say it again,
threading large wooden beads on a shoelace? When you’re ten? Slightly demoralising?
Belittling? This is the treatment we deserve for a totally knackered body,
immune system and every other system within your body? Even if they were to
suggest making jewellery; which I did think of, it would not work. Threading
beads sound innocuous but, you have to think and manipulate kinetically, this
would take two energy factors, and yes, it gets that basic.
Colouring books came next. The
type that are used for stressed people. It is to put you in a hypnotic state
and has been proved to help with brain flow, brain mapping and stress. So we
gave it a go. The thing they just don’t get, is the pain and stress on joints
when you are trying to do anything when you have M.E! A lot of M.E sufferers
have hypermobile joints that hurt, and when you have a disease that also attaches
them, this pain is doubled. After an activity, whether you enjoy it or not, you
are left with more stress and energy burnt. They don’t listen or look at the individual
they just give you silly things to try that sound half reasonable, hoping you
will go away and get better. If you don’t agree with them and don’t get better
then they start throwing accusations around.
Now most of these things are
girly but friends of mine that have boys with ME are treated the same. Now
don’t get me wrong I’m all for equality but it don’t work does it?
Doing crosswords and word
searches was the next thing. This was suggested at the time Rosa could hardly
see most days, she was dizzy and felt sick. Cognitively she found it difficult
and this is one I never tried with her. Again it is to do with the brain and
its function with lactic acid eroding away the brain cells.
So when they suggested the
exercise ball, I didn’t think anything of it. I did question eating while you
were on the ball, but they insisted that it would take Rosia’s mind of the pain
of exercise, to help with her avoidance. It was useless to say that her
reluctance was not due to her not wanting to exercise and that she was aware
that new exercises brings aches at first; she was a gymnast. They just would
not believe she would suffer the next week or so that pain would increase and possibly
leave her bed-bound.
Well it made us giggle; there we
were rotating gently as we made sure our posture was correct so that our inner
core was correctly engaged, while eating a chicken sandwich. We tried not to laugh.
When Rosia reached across to put her plate on the side of the coffee table, she
had over reached and cramp had set in. Cramp is a constant problem for her
muscles. The ball slipped and piece of chicken had got stuck in the back of her
throat.
After I had performed the
Heineken manoeuvre, she had been sick and I had given her pain relief, I vowed
I would not listen to any more silly ideas. I knew however, they had the power
to take everything away from us and make our lives more miserable then it was
already. That to have the letters to the school to enable Rosa to be home tutored,
so that she reaches her goal of becoming a vet we needed to keep the silly
idiots on our side. You have no choice but to try!
She was bright, she was breezy,
she was incredibly silly, but she was all we have, so we sat there with our
eager faces on, in our multi disciplinary group meeting with our engaging persona,
not daring to look at each other.
“Well Rosa the last time we met
we discussed your efforts to get back to normal life how did you get on?”
Eager eyes looked over to her, I
held my breath.
“Well it made me wonder?” They
all lent in for the revelation, the breakthrough they had all been waiting for,
she paused longer for effect. “About your health and safety record! Because
eating while on an unstable surface is not the right thing to be telling your
patients.” Their faces dropped into expressionless professionals, “however the
trip to hospital” again she paused to draw out the full impact. “To stabilise
my condition was worth it, I met a rather thoughtful and considerate junior
doctor, who has found I have PoTS, Hypermobile joints and a problem with my
heart, alongside my M.E.”
Their faces were blank, none of
them believing what had just happened. M.E is defiantly the chronic illness
that just keeps on giving.
The End
Emotions have been hijacked as
propaganda to show M.E sufferers in a very disparaging way. What they forget to mention is that laughter,
happiness and excitement are all activities and can change the chemicals in the
brain, they also have an impact on the energy of a person with M.E. Sufferers know these emotions affect them, just as much as being sad at your
predicament and anxiety that comes calling for no good reason and out of the blue.
A multi-disciplinary team must mean that, and it must be led by medical factors firstly and psychiatry secondly if psychiatry is needed at all. Your physical health has a direct bearing on your emotions.
A multi-disciplinary team must mean that, and it must be led by medical factors firstly and psychiatry secondly if psychiatry is needed at all. Your physical health has a direct bearing on your emotions.
David Tuller, a public health journalist found flaws in the trial which meant it should never have been published:
This was taken from the EDHS website:
A few patients diagnosed with somation/CFS/ME could have Ehler-Danlos Syndrome (a connective tissue disorder)
http://www.edhs.info/#!symptoms/c1qvq
Patients
who truly have Myalgic Encephalomyelitis (ME) do not benefit from (and could be harmed by) inappropriate exercise. Exercise therapies
can leave ME patients far
more severely ill than they were before
and sometimes in need of emergency care. ME patients
that are able to rest adequately in the early stages of the illness have the
best prognosis. ME patients must strictly avoid overexertion to have any
quality of life.
Taken from the Voices from the shadows:
http://voicesfromtheshadowsfilm.co.uk/me-cfs-and-research/
The dominant view promoted by the UK Government through its
National Health Service, Medical Research Council and the Science Media Centre,
has long been that although ME/CFS might initially be caused by a virus,
accident or stress, the long lasting debilitating illness these patients suffer
is, they say, merely the result of physical de-conditioning caused by a fear of
activity or exercise and over-attention to symptoms. This claim ignores the
large and growing body of research demonstrating a severe neuro-immune physical
illness. It has had devastating consequences for patients as well as for
doctors and researchers supporting a physical understanding of the illness who
have been threatened with losing their jobs and in some cases have lost their
jobs. An explanation of these contrasting views can be found in “Chronic fatigue syndrome: Harvey and
Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on
inflammatory and oxidative and nitrosative stress pathways” by Michael
Maes and Frank NM Twisk at www.biomedcentral.com
For many
years several million pounds worth of MRC research funding for ME/CFS has been allocated to studies run by
psychiatrists and psychologists examining the usefulness of different
combinations of management programmes more appropriate for behavioural and
psychological conditions. These are cognitive behavioural therapy (CBT), which
was originally developed to treat depression, and graded exercise therapy
(GET) which is also considered to be a valuable treatment for depression and
de-conditioning. These ‘treatments’ for ME are actually management programmes.
They are used extensively to support patients receiving medical treatment for
illnesses such as cancer, whereas in ME/CFS these behavioural management
programmes are being used as a substitute for proper medical treatment.
Alarmingly these recommended ‘treatments’, particularly GET, has been found to
exacerbate illness and increase disability in many ME patients, sometimes
resulting in lifelong total incapacity. (Further reading can be found here: www.ncbi.nlm.nih.gov & www.iacfsme.org)
There is a video from the ‘FDA: Development of safe and effective Drug
Therapies for CFS and ME’ workshop with Prof Chris Snell an exercise
physiologist talking about the objective measures that can be used to assess
patients severe disability. Here on Day 2 Panel 3
Lactic Acid and the brain
Shungu believes the increased lactate levels he has twice found in the brains of ME/CFS patients may result from reduced oxygen levels. He believes increased oxidative stress may release substances called isoprostanes which restrict the blood vessels in the brain. Those constricted blood vessels result in low oxygen levels (hypoxia), anaerobic energy production and the release of lactate.
In
a small study Baraniuk subsequently tied increased brain lactate levels in Gulf
War Syndrome to reduced cognition. A subset of GWS patients
with increased brain lactate levels prior to exercise demonstrated significantly
reduced cognition after exercise. Baraniuk attributed the
cognitive decline to the brains inability to utilize the lactate produced by
the muscles during exercise. The inability to use the energy resource
that lactate presented resulted in the brain using anaerobic metabolism to try
and meet its needs.
In
PoTS, for some reason the autonomic nervous system doesn't function
properly. There's a drop in blood supply to the heart and
brain when you become upright.
In an
attempt to compensate for this, the heart races and the body produces lots of
the hormone noradrenaline (one of the hormones that prepares you for
"fight or flight").
So what happens to people with oxygen levels that are
taken from their brain for many reasons?
