Sunday, 9 February 2014

When it all Changed

I look back at this picture and it brings a lump to my throat along with mixed emotions of joy and great sadness.  It was taken in May 2010 by Dave - we had just completed the Race for Life in memory of my mum who sadly passed away after suffering for many years with None Hodgkin's Lymphoma in  December 2009.

When I look at this photograph I remember what a beautiful day it was, the sun was shining and the event was full of laughter and positivity.  After receiving our medals we all kicked back on the field and enjoyed ice-creams, silly banter and just enjoying the moment, the fresh air and sunshine.
Little did we know how soon all this would change.  Throughout 2009 we had noticed Tara, our youngest daughter, seemed to pick up every virus and bug that was going around school, in October of 2009 she caught swine flu and was very sick with it, even with the antiviral medication.  After that she suffered many frequent throat infections and in 2010 she started missed huge chunks of time off school, which started to raise alarm bells with them and insistence that we send her in, even when sick. We were even told that if her throat was too painful for her to speak she could carry a notepad around and write down what she wanted to say instead! (This is regardless of the fact that she was in pain, feeling terrible and had a high temperature AND doctors notes to support why she needed time off school).  Eventually the throat infections became more severe and she had pustular tonsillitis over and over which then gave way to what they thought was Glandular Fever, so the school were notified and more time was taken off.  However, when she still didn't get any better the decision was made to have blood tests to see if it was Glandular Fever or if anything else was going on.  The bloods were taken and results all came back as negative - at this point it was decided to refer her to the Childrens Hospital for emergency appointment, we were seen quickly and after further tests and physical examination the diagnosis of ME/CFS was given.  By this point Tara was just so exhausted she would fall asleep on the floor, in the middle of eating her dinner, even halfway through speaking a sentence.  She spent months just sleeping, unable to go into school, keep up contact with her friends or do anything productive at all.  She had chronic back pain and awful nausea meaning she could barely eat and lost an awful lot of weight.

During the next year we visited pain clinics, physiotherapists, occupational therapists, clinical psychologists and regular clinic appointments.  We tried GET which caused her to become even more sick, we tried hydrotherapy as it was thought to be more gentle on her body but that wasn't tolerated either.  Eventually we pulled back out of all hospital interaction and maintained only contact with the clinic.  We de-registered her from school and sought the help of an osteopath to provide lymph drainage therapy and help relieve her terrible back pain. Then came a time of rest, many months in bed or on the sofa and a wheelchair for outside excursions.  

At the end of 2012 we sought a second opinion from a private doctor as Tara had started having seizures, hallucinations, blackouts and extreme fatigue along with more weight loss.  This Consultant was incredibly up to date on ME and was very sympathetic and understanding.  He ordered 24 hour heart monitor and brain monitor for her to see if seizures where due to epilepsy or heart abnormalities and also referred us to a nutritionist he could recommend who understood the needs of children with ME.  The results of the tests were all normal except she had a faster than normal heart-rate.  We stopped all medication and this has eased a little.  With nutritional supplements and change of diet Tara has gained some stability in her ME.  She had a full gut analysis test which has shown she doesn't absorb fats well, most of it is excreted and that her immunity is far lower than the norm should be and that her friendly bacteria are lacking.  Her diet is focussed on addressing this and although she is still very slender, she has managed to gain a little weight over the past few months.  She has now regained enough strength to be re-registered at school, but educated off site. She has home tuition via the medical authority for an hour twice a week, until the time arrives where she becomes strong enough to then transfer into the hospital school-room and possibly even back into the mainstream school on a severely reduced time-table. 

She is currently still very sick but learning to pace and be careful with how she spends her energy.  We still experience severe relapses and she is currently having one now, but at least now she knows that she can climb out of these episodes and with pacing manage to have small pockets of a social life with friends.  She also loves film and editing work on her computer, we are having a bespoke green-screen made for her bedroom and so even when sick, on days where she has some energy she can play around with her camera and make short films/take photographs to edit.

I feel pictures say for more than a thousand words and this picture shows the transformation from healthy and active to sick and struggling ....

Tara Mawer

Why am I sitting here alone
in my room?
Because it’s quiet

I have C.F.S./M.E.
it makes me feel
cranky, tired
sick, sore, weak
and in pain.

I miss my friends
I don’t go to school.
I can’t
not well,
always ill.

Can’t read or write much,
too much causes my brain to stop,
causes headaches.
Sensitive to lights
and sound.

For me eating is difficult
nausea and dizziness
are always there.
Medication they give me,
so many tablets.

I have a computer
online friends
to keep in touch.
HOPE – I don’t give up.
One day my life
will be how it was before I had M.E.


Tasha, our middle daughter, started to become sick in February 2012.  It all started with viral meningitis which made her very sick for a long time.  However, when she failed to recover week on week we became increasingly anxious and ended up in A&E.  She had a CAT scan of her brain which thankfully showed no swelling and so referral to outpatients at the Childrens hospital was made.  After several months of no improvement, with clear blood results yet increasing exhaustion, headaches, joint and muscle pains along with nausea and cognitive difficulties a diagnosis  of ME/CFS was given.  She has not been in school since February 2012 and her ME symptoms have steadily become more debilitating, leading her to now be almost constantly bed-bound/sofa-bound and on good days able to be taken out in her wheelchair.  

She is unable to do much at all for herself, but on a good week is able to participate in approximately 20 minutes of home tuition.  She suffers from joint and muscle pains, digestive issues, nausea, hallucinations and intermittent paralysis of her legs.  Her social life is all but destroyed, although she has a wonderfully understanding boyfriend who comes over and sits with her and a couple of close friends who she mostly keeps in touch with via the internet.  She is still in the acute phase of this illness and we have no idea how long it will last, as every sufferer is different.  We hope that soon she will start to come up out of this stage and be able to pace and utilise her energy to allow her more participation in life.  Until then we can only support her and care for her as best we can.  To try and keep her spirits lifted and know that she will, one day, start to improve just as her sister Tara is doing.

This is my lovely girl at the beginning of 2012 and then how she is now....

Life through my Lens
Tasha Mawer

Looking through my camera lens,
altering the focus,
Trying to get a good clear shot,
keeping it all in the frame.

Photography keeps me occupied
My life otherwise on hold.
It makes me happy, lets me see
the world in different perspective.

I have M.E. it sucks, so very tired all the time
whole body aches from head to toe,
every joint and muscle , legs hurt too much to stand,
Drugs for pain, drugs to sleep, drugs to eat!

GCSE’s now on hold, can’t get into school.
Will try to go to College in 2 years – so just
Postponed not cancelled -  still try though
A little each day in bed, keep the brain active!

Looking at my pictures, happy with the shot.
Pondering on why me – why now – why?
No answers, sadly come to me.
So try to just  deal with it day by day.

Some days are better than others,
I can walk about and have a laugh.
Others can’t get out of bed, can’t eat
Or talk or interact at all.

I have hope – I want to be a photographer,
To go to College and learn how.
To have my own studio and meet people,
To live, to laugh, to cherish life and love.

One day – I tell myself it will happen,
Cure will be found and treatments given.
So until then I get out my camera – watch
Others and dream of what will be…

 We have found comfort from supporting Invest in ME as they are actively pursuing research and searching for answers and treatments for sufferers.  If you want to support them you can purchase a wristband from :