My Life
Having
CIVD, rare disease or cancer (incurable, chronic, debilitating downward spiral
is like living inside a snakes and ladders game. I know because I play the game. You roll the dice and you go up some
ladders. You hit a lucky stroke and you
find yourself a step or two ahead. And
when you least expect it, you land on the head of the snake and you slide down
so fast your head spins. It is a series of mini avalanches. No sooner has the person recovered from one
disease when another takes its place. It
is as though the various diseases are competing to see which can do the most
damage in the shortest possible time.
CVID is about slowly watching the pieces fall off, bits that stop
working, energy levels deplete day by day.
The body slowly disintegrates; things that worked yesterday don’t work
today. There is little warning, diseases
come in the night and are full blown by the morning. There is a constant battle going on inside –
always hovering just under the surface, even when it’s a good day. And with velocity…rapidly one symptom looms
much larger than others and now the ER, doctor, physician has something to
notice. Body temperature tells you
nothing. With no immune system, the body
shows no temperature. Temperature shows
the body fighting back. CIVD leaves a
much lower than normal core body temperature.
The lower the temperature, the more ill the patient becomes. Just one more challenge – not having a
temperature does not fit into the protocol of admission to hospital so you are
sent home, often feeling that the doctors think you are a shirker.
The
mind can’t remember, the bowels sometimes don’t work, the bladder is a problem,
lungs struggle, bones ache; nausea never stops.
Even hair falls out; it was where it should be last night but in the
morning the pillow looks like a shaggy carpet.
Skin lesions appear without a bump, blood vessels burst for no reason,
skin itches like a million ants crawling beneath it.
I
marvel at the capacity of the human body to take this relentless and
remorseless onslaught. Survival is a
mystery. And why I would want to
continue to live is bewildering – because under all of this there is still that
will and that hope that tomorrow will be better. Is the need to live an instinct or is there a
soul that refuses to surrender? I am
bewildered by the enormity of the question of the soul. I cannot comprehend that I am just a material
thing and that I will not have consciousness after death. Is my thought that I have an eternal soul
merely my way of lowering the internal distress I feel when I think of death as
being the end to my consciousness? At
what point do I say enough is enough – at what point do I surrender because
life no longer has meaning living as I am now – why do I constantly hope that I
will be helped, that I will get better, that my circumstances will
improve. When will I accept these circumstances
so that my fate is more acceptable to me?
What kind of life is it to trudge through from one infection to another,
some more severe than others? What life
is it that if you do even the smallest thing outside of your bed, you will
repay in suffering every ounce of energy it allows you on a tolerably well
day.
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