Understanding Paralysis : a repeated torture.
If
you have never had paralysis, you will never understand the
horrendous impact, the multiple cloying sensations, the seething
disappointment, the utter desolate loss of ability, communication,connection, contact, the brokenness it creates within
and without you.
Broken ability to move,to speak, to reach out, to do
anything at all,no matter how small or seemingly insignificant, even
scratch your face or move your finger, blink your eye or swallow. Let
alone touch, hold, call out, explain, tolerate, bear physical contact
or even presence in the room.
Every
noise, already a torment,slices through you, causing internal mayhem,
every exposure to light, which hurt indescribably before you were
paralysed, burns you inexplicably deep inside your head. Every
movement near or past you is like a slap, a push, a confusion, a
shake to your whole system. Every exposure to perfume a mind -
numbing, nauseating, gut hitting, head banging experience.
The
bed, never comfortable to start with, becomes harder and harder, your
heels, your limbs, your hands, your back, your head, your neck,
become pinioned to it, pain intensifying, invading, increasing
inflammation and agony.
The
seat, equally so, with feet trapped to the floor, simply, impossibly
glued to the ground.
Back
muscles screaming, unable to hold me up.
Paralysis
through sleep or rest is relatively peaceful. It creeps into you,
while you do not notice. Paralysis caused by noise or shock is
brutal, cruel, suddenly forced upon you, creeps up your limbs, your
body, into your face, while you are awake. Violent, horrible
sensations, burning, throbbing, screaming muscles, pain increasing
higher still?
Coming
out of it is a horrible as being in it. You have to try to move. You
will it, but nothing happens. Eventually you might be able to manage
a toe wiggle or in time, perhaps one foot. Repeated and repeated, one
toe at a time, you wriggle them, hopefully, till somehow it breaks is
hold partially, for a moment, maybe on a limb or a group of muscles.
You might be able to turn over, to swing round, to move your feet.
You might be able to get to the toilet, or take your pills, or
swallow some water through a straw. But it does not mean it has left
you. It never leaves you.
It
still has you in its grips. Sure you moved some muscles for a moment.
But you return almost immediately to paralysis again.not just
paralysis, but intense numbness and cold pain- filled limbs. It
remains close always. There are degrees it seems, not totally
paralysed to gross movement, but paralysed for fine movement. Maybe I
can move my finger, but not my arm. Or maybe I might move my arm but
have no control over my hands, my wrist, my fingers.
Maybe I can move
for a second, then return to total paralysis. It is so hard to
understand, that even when you manage to move, still you are numb,
burning, mind blank, unable to function, to hold things, to do
things, to feel or function. You are so close to paralysis or so
weakened by it, that still, nothing, is possible. And it simply goes
on and on and on.
It
is so hard to put into words the invisible horror and experience of
it as it buries itself into your arms, your hands, your fingers, your
throat, your min, as it takes away all the left side of your face,
your nose, your lips, your tongue, your ability to speak or drink or
chew or swallow, the feeling in eye, your leg, your feet and your
toes. You may look like you are asleep or peaceful, but you are
present and in agony. You may be in distress. You have multiple needs
but you cannot convey them or tolerate them. Your fingers never feel
anything but numbness and are never at the level of ability you had
before this illness struck.
Never able to feel comfortable, to feel
any normal sensation, no strength, only weakness, weak muscles,
horribly weakened, screaming, crawling, jelly, non- sensations,
moving through you repeatedly, alongside multiple levels of pain,
burning, throbbing, itching, stabbing, irritating. Literally no part
of you, not a millimetre, is without pain.
I
might get the use of a hand or a finger, yet my left side may remain
completely stroke- like, no feeling, no movement, limp beside me.
Once, my right arm and hand and fingers were completely paralysed,
unceasingly, for 6 months. The paralysis may flow in and out, so that
one minute there may be slightly more feeling, more ability, only to
be wrenched away the next; no part of me is ever normal. It never
feels like before I was ill. It is always in varying degrees of
numbness and total constant pain and incapacity. Pins and needles
weirdly flow in bizarre places, like the side of my head or my knees,
as well as my hands and feet.
Worse I have hyperesthesia so that the
lightest contact anywhere on my body hurts me unbearably and
irritates. Pressure is intolerable.
You
would think it would be researched. You would think it would be
medically explained. You would think there would be appropriate
support and medical provision, medical interest even. You would think
that everyone would know the most severe symptoms of Myalgic
Encephalomyelitis. You would think the charities would be raising the
roof about this omission, this medical neglect. But no.
Unbelievably
it is not in the criteria used, despite it was documented by the
pioneers of Myalgic Encephalomyelitis, including Dr Richardson.
Instead
of medical respect, validation and support, physiological
explanations and thorough investigations, we are left to get on with
it, with all its torment and unpredictability, incapacity and its
massive, inconvenience to every day living, dismissed as very little
to worry about.
Left as if somehow it is not that bad, not that
horrendous to experience, not that devastating or simply at most,
just physically unpleasant to repeatedly endure every day, maybe
several times a day, kicked into nothingness by the slightest
unintentional wrong noise or the abusive ignorance of careless
neighbours, motor bikes or jet engines repeatedly flying overhead,
the impact lasting hours on end if not much, much longer, even people
chatting amicably in the street is a noise assault, that can lead to
harm. Yet despite this devastation, the impression that lasts, is
somehow it is my fault or worse that it is not physically real at
all, something I am somehow creating myself, breathing wrongly or
panicking, which is simply wrong.
Believe
me when I say that my life is not just a torment, it is a repeated
torture in the worst moments. Yet paralysis, my daily nightmare, is
untreated and this is simply unacceptable to me, that it is ignored,
dismissed and misinterpreted, without proper investigation, left at
best to any opinion or clinicians belief or pet theory.
It
staggers me then, that anybody with genuine ME , would not be
demanding and calling for a biomedical pathway, serious medical
consultants, proper in depth medical investigation from people
genuinely willingly to look and properly interpret results, willing
to forge a proper biomedical pathway and give hope to those of us
most severely physically affected and medically ignored.
Why
would anyone think a psychosocial pathway was enough or acceptable or
appropriate? Why would anyone accept CBT, GET and activity management
are actually treatments for this serious neurological disease? How
can they not see that compliance, apathy, acceptance and promotion of
it, allows psychiatry to waltz in and misinterpret, mistreat, misname
and misinform people about my illness?
I
cannot understand complicity with untruth and misrepresentation. And
I will never accept it myself.
Myalgic
Encephalomyelitis is a neurological disease with multi- system
dysfunction. Paralysis is part of it. It is not just a fatigue
condition. It is not CFS. Do not confuse the two.
It needs a medical,
not a psychiatric response. Paralysis is a key part of ME ; its medical
investigation, respect and support are long overdue.
Greg, if this post is an accurate description of your personal experience there is a very reasonable chance you suffer from a form of periodic paralysis not normally even considered ME. If you will send me email, I can put you in touch with someone who knows a great deal more than I do about the subject, and has been able to cope well enough to have a professional career.
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DeleteWe are very interested in exploring the possibility of periodic paralysis - thanks. We don't have you email, could you contact us through Stonebird- contact button on right hand side, at the bottom : bird with pen. Thanks so much.
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