We
Will Never Give Up
Or
Give In
‘She who will not be named for fear of bursting
a blood vessel, has only gone and copied in the GP, paediatrician, CAMHS,
school and a load of other people who will be breathing down my neck for
explanations! School have already rang to see when can they expect Sian back in
school. The sheer stupidity of it, it states and I quote that “Sian can manage
3-4 hours high energy activity per day without increasing her fatigue!” How the
bloody hell does she know that? I told her fifteen minutes four times a day is
all she can manage, add that up by my reckoning it’s an hour. Brushing her
teeth on a bad day can zonk her out! You go to these professionals and you
wonder if they have any ears, because they sure don’t listening to what we say,
and they must have grey fuzzy bits instead of working brain cells! Dr Ramsay in
1986 listed the criteria for diagnosis of ME and now the researchers are
getting the technology to prove it all, and still the psychobabble twaddle lot,
gets heard above reality.’
Carman had opened the chilled bottle of
Prosecco, the neck of which she tightly squeezed and twisted cork harshly, as she
handed the letter over for inspection while she grabbed the flutes.
‘Four years ago they proved that the heart rate
and blood pressure was down to ME and not deconditioning, the harms that bloody
PACE trial did, is still doing.’ Becky said as she scanned through the letter, and
her shoulders sagged as small whimpers of condemnation escaped. With each
little escaped concern, Carman’s shoulders lifted, her back straitened and her
normal resolve restored.
Becky went to speak a couple of times, but had
to rethink and squirmed in her chair as though this would shed some light on
the perplexity her mind was in. Intently Carmen looked at her friend; they
gulped on the wine in syncretisation, quenching their joint indignation. Carmen trying to calm down, intently looking
at her friends facial reactions; Becky would never make a poker player Carmen
thought, as she refilled their glasses.
‘What meeting is this devil woman talking about?’
‘The one we went to last week!’ relief flooded through and
warmed Carmen’s aching limbs that were tightly coiled round her dismay.
‘See Becky, there is no explanation of what high energy
activity is? So those muggles will now think Sian can go to school - hence the
phone call. Sian can’t even cope with full daylight now.’
This was like a punch to Becky, she had not
realised things had got this bad, hopefully she thought it was just going to
the hospital and the journey that had brought this on, and she would recover
given time.
‘They assured you that high energy is sitting up for Sian
at the minute, and not to worry.’
‘I know, but reading down they also go on about shopping as
being a good social integration and will support her back into school? The
hurtful thing is it’s her favourite thing in the whole wide world to do, you
know how she is with designer clothes, she collects them like stamps, it’s like
putting needles under her finger nails and telling her to cope, as her nails
pop off one by one.’ Exasperation dropped from both their shoulders.
‘But we explained all that. Oh honey your wizards
don’t use their wands’ Becky’s flabbergasted reply needed quenching, she took
an angry gulp of wine. At this rate they will both be seeing double shortly,
thought Becky, as she tried to focus her mind on the letter in her hand. But
reading down the words and their implied meaning, just did not make sense. She
could forgive someone who had never been involved with Myalgic
Encephalomyelitis, god knows ME is a multitude of complexities, but for a so
called professional, this letter is disturbing as it is disgusting, she
obviously did not understand severe ME.
‘We don’t have wizards, we have muggles, the worst kind of
muggles the ones that think they are wizards! When will your wizard be back in
action?’
‘The General Medical Council are taking their time, they need
to think carefully they say.’
‘What are the Dark Lords trying to hide this time?’
‘Who knows! It’s like a fairy-tale nightmare; muggles find it
hard to believe. Unless you have lived in the world of so called medically
unexplained illness, only it’s not medically unexplained is it. Four years ago
they dispelled that myth of deconditioning. Medically unexplained my deodar,
not looked for because you are labelled “the undeserving sick!”’ Becky blew-out
through her relaxed lips that expelled soft pillows of air, as she threw the
letter down.’
‘That theory was promoted by the dark Lords of psychobabble so
a political battering ram could be used by Department Work and Pensions, now
the cuts can go through?’
‘It’s just so wrong, remember the hours our girls
spent looking at stuff on line to occupy them while they were both so poorly.
It was their only joy. Their need to shop at all cost was the one thing that
convinced me the psychological element to ME had very little to do with them.
Physically unable to live gave them emotional consequences of being SadMad, that
dragged them down on the odd occasion, but that was as far as it went. Rather remarkable
considering what they were missing out on. The support they gave each other was
amazing. That reminds me Beth is coming home next week from Uni and wanted to
know if she could come and see Sian?’ Becky could see the pain through the warm
smile and regretted her lack of tact. Maybe half an hour or so?’ Gently
suggested Becky, ‘She could dry shampoo Sian’s hair make her feel….’
They both took a large gulp of wine, her and
her big mouth thought Becky.
In the early days of Fiona’s illness she could remember
feeling jealous of Carmen and Sian. The odd time they would go out to a shop,
had felt at that time like a knife was being inserted and twisted inside her.
Now the reverse was true and how do you cope with that? What the hell can you
say to make things a little easier?
‘Have you managed to get out lately? Bite your
tong off you over large buffoon in a tutu, Becky shouted at herself.’ I should
know better than that, sorry.’ She thought as she sipped, how the hell can Carman
go out while Sian blacks out and has nose bleeds all over the place? You prize
pilchard, if someone had said that to you, you would have flattened them with a
lashing of your tongue.
The tears close to Carmen’s lips were drowned by prosecco; the
lightness of its flavour, easing away her need to escape.
‘What I would not give to be spending a fortune
on clothes right now, just looking on the internet with Sian would be a joy. They
quote socialising twice, did you notice?’ she pointed to the letter ‘and as one
of her main targets. For the love of fluffy ducks! Out with friends coping with
the lolling around talking frenzy of teenage girls, is just unthinkable the consequences
of all these things would put her back weeks, let alone trying to do 4 hours a
day!’ Carmen realised what she was saying and looked across apologetically at
Becky, who she could see was pained by her earlier suggestion ‘That does not
include Fiona, Fiona understands and will...’ Carmen turned round to
unnecessarily tidy the work tops. ‘Bless ya, I know you are both desperate to
help. But sitting up for Sian is high energy these days, her blood pressure and
heart rate goes on a roller coaster ride all of its own. Having to go down stairs
is like a Tibetan mountain hike, with all the organising that goes with it, pity
there is no shirker, I could do with a shirker.’ Forlorn she put down the
bubble filled flue, with a cherry bobbing around the cool fizz and both women
giggled into the sadness, their memories floating on the bursting bubbles of
time.
Becky did not need telling how body destroying
this illness was, and the impact on someone who was suffering like Sian; her
daughter had been hit hard by glandular fever for a couple of years, but the two girls treatments had been pols
apparat and none of it made sense.
Unlike Fiona, Sian had heroically carried on, while
her daughter was flattened by the virus from the very start. When Fiona had
pads over her eyes as the daylight felt as if it was burning through to her
brain, Carman had stood firm and more or less carried Becky through the bleak
times, with her humour, wit and determination.
There was a year where the girls were at the
same level of illness and although couple of years apart in age, they supported
each other through Skype and the media of the youth. In those days they were mostly
bedbound and yet Fiona picked up and started to recover slowly, with dips and
troughs, but a steady rise in ability and yet Sian, who had been stronger at
the beginning, just kept the same, no increase in stamina. It was like watching
your friends family have a slow car crash that you could not stop or avoid,
whatever you did.
Unlike Sian’s, Fiona’s GP and paediatric never
pushed and explained how long it could take to recover. They had a system in
place that wrote letters and talked with the school, organising Occupational
Therapists, getting a disability badge which was a god send to enable Fiona to
go out. Becky had none of the letter writing that Carman has the five folders
full of reports and letters stood to attention near the phone. All the time
Sian just kept slowly detreating, it was shocking. She had no tests and Becky
could never understand the rational of her medical team. When they had gone to
the hospital last week, it had seemed as though some understanding was reached
over the seriousness of Sian’s condition, but this letter was a worry.
The conflict of emotions she felt over seeing
her dearest friend’s daughter fight against this hideous illness, the same
illness that her daughter had gone into remission from. Fiona had struggled
through school, but they were always gentle and kind with her, made to
understand by the wand of the greatest wizard. Now she was at Uni; admittedly
not able to partake in a full Uni life, but had some life, was deeply painful
for her. She felt as though her heart was being wrenched out, and the guilt was
over whelming.
‘Oh I almost forgot; your YouTube video has gone viral!’
‘What YouTube video Becky?’
Cautiously and with apprehension, she screwed up face as
though a blow would be administered at any moment, Becky explained.
‘The one we made last week, when we did the ME challenge. You
know how many times you can say Myalgic Encephalomyelitis while
sucking helium and being paint bombed’
‘But I couldn’t say it, and we gave up’ Carman stunned
expression was a joy.
‘I know.’ Becky broke out in a girlish grin, widening her
eyes and raising her shoulders in excitement! ‘That’s what made the clip so
funny; they seemed to like middle-aged women pratting about- look we’ve had…’
Carmen had snatched the phone and started to
play the clip, at first she winced. Seeing herself in a Victorian bathing
costume with a duck inflatable was a little distressing, she really must go on
a diet. The shower cap with its sparkle was over the top. She most definitely
looked like a pantomime dame. When it came to the part when she was trying to
suck helium, being shown by Becky, who was also dressed in the same attire, they
started to giggle together heads resting on one another. Her trying to focus on
saying the difficult words with a tongue that was semi paralysed by prosecco was
hilarious, she had to admit. Sian was maliciously setting off the paint bombs trying
to get them in the faces, from her wheelchair. Carmen did not know whether to
be annoyed at her stupidity or proud that she was brave to keep going, what
harm could a little fund do? The smile Sian had on her face was worth the
payback, and when she is able to watch it will give her endless fun.
Her embarrassment was nothing really, no one
would know who she is, and those that did would enjoy the spectacle. It would
be worth it to get some understanding of this illness out there, even in a
small way.
When she looked at the mega amount of hits, it
blew her mind, and when she looked at the “Just giving Page” it was
heart-warming. People can be so kind.
‘Like you said at the end Carmen’ Becky put her
arms around her friend, who she was so indebted to and admired from every
angle. ‘We never give up, we will beat this!’
For the first time in five years, Carmen really
did believe it!
If you can just give a £1 to my just giving page so that people with ME get the research needed to stop this illness from robbing 25,000 children of any fun in their lives.
Thank you
https://www.justgiving.com/fundraising/Tilly-Moments?newPage=True
