It's
different for every person living with DMD but here's how it affects
me. I'll be using a template from an earlier post to save tired eyes
and arms.
Day one:
For a
few weeks beforehand my chest was misbehaving and on this day I
noticed I had a dry throat. I thought nothing more of it but
gradually throughout the day it got much worse.
Day two:
I awoke
hunched over with my full face mask on and it's a bad day. Mam asked
the doctor to come over and when she arrived my mother took my
ventilator off, moved a towel in front of my face as I dribbled on it
and then the doctor examined me thoroughly and prescribed me
antibiotics. I had two periods of suction as soon as I was up, in bed
of course. My mother got me hoisted into my chair quickly because
breathing is especially difficult when I'm ill on top of DMD.
Next my
wheelchair knee pads were put into place then my mother covered my
feet, legs and arms with fleece covers and put my wheelchair table
on. Then she attached my wheelchair controls which are tongue powered
and then I get in my elevator and went downstairs. I controlled my
breathing in my lift all the way down hoping not to cough and get in
a panic. Once I reached the ground floor it was off to my living room
where my super mother put my nasal ventilator on and suctioned me for
sixty minutes. I still haven't had a drink or food by this time
because it just isn't possible while suctioning.
Once I
was able to breathe without an overly noisy chest, my mother
reattached my wheelchair controls which were removed for suctioning
and left my nasal ventilator on as I drove into the bathroom where my
mother removed my wheelchair paraphernalia and helped me use the
facilities. Leaving my ventilator on whilst it's on battery adds
difficulties of pipes hanging down and catching in everything but
we've got a system of head positioning to help. Fifteen minutes later
I was back in my chair and my mother then washed me and put my tee
shirt and covers on whilst temporarily pausing my ventilator use.
After
another quarter of an hour it was back into my living room where my
mother set my computer up, and places a wooden block by my abdomen
and places a drink on it. It was so refreshing to drink especially
with a sore throat and this allowed me to take the antibiotics that my father went to get followed by painkillers. My drink was a laxative mixed
with water and Ribena to mask the taste. My mother then cooked my
breakfast of blended scrambled eggs and macaroni cheese (from a tin)
which was also blended. As my mother prepared to feed me (my
ventilator was off to eat) I needed to have suction which made my
breakfast go cool but it was far more edible with a relatively clear
chest. Then she gave me my regular medications followed by putting
the ventilator back on and giving me a drink of water.
For the
next few hours until my lunch my mother suctioned me every half hour
to an hour. I used my computer to tell my friends and family what was
going on and do a few important things. I was fighting tiredness whilst
doing this and often dropped off into a nap as I was feeling washed
out and in a daze. It was terrible feeling my chest fill with
secretions and breathing through it is extremely hard. It's not great
to keep asking for suction especially as my mother was very busy
getting her meal sorted. I hate to bother her when she's eating
because she needed sustenance and a break to rest her weary body and
suctioning arm.
My lunch
was served at eight at night because I'm out of bed at midday and
once I was able to breathe without an overly noisy chest again, my
mother fed me without my ventilator on. I controlled my
breathing throughout eating because I didn't want yet more suction.
My lungs ached after the ordeal they had endured so far. Once
finished my mother reattached my wheelchair controls which were
removed for suctioning and put my nasal ventilator back on and I drove
into the bathroom where my mother removed my wheelchair paraphernalia
and helped me use the facilities again. Half an hour later I was back
in my chair and my mother reattached everything and got me set up on
my computer until dinnertime.
My
suctioning needs begin to tail off and I only have two or three more
episodes before dinner. I was given more antibiotics during this
time. I used this relatively calm period to do some digital art which
took my mind off being ill on top of having DMD. My faith keeps me
going throughout this illness because I knew and continually know
that I will be free one day. However it's still mentally tough living
with this monster on my back telling me metaphorically I'm going to
get you!
Dinner
arrives and the same routine of breathing carefully without my
ventilator, eating which was fraught with swallowing issues and the
toilet procedure ensued. Then back to my computer until bed time
where I just relax by listening to calming music and drink my
laxative laced Ribena. Then I switched my computer off and my mother
and I took a further two hours to get to bed doing some suction and
many other things along the way. I was hoisted back into bed which was
adjusted to a sitting position, some small personal care tasks were done, my bedding was put over me and my night ventilator was put back
on followed by the placement of my easy press button in my right
hand. Once a few extra blankets were placed, my mother switched my
light off and we told each other “I love you”. I finished off
that day with eleven periods of suctioning which took anywhere from a
few minutes up to an hour.
Day
three:
I felt
much worse this day as my throat really hurt, I even had to wake my
mother up overnight to suction me in bed. My day was almost identical
to the one before and even though I felt worse I only had nine
periods of suctioning.
Here's
what I look like being ill on this day.
Day Four
and onwards:
We are
now up to the present day and I'm feeling much better throat wise.
I've had five periods of suction with another to come so we're moving
in the right direction. Over the next few weeks hopefully my
suctioning will get down to two maybe three daily periods which is
normal for me. Also my throat should return to normal with no further
recurrence hopefully.
Update:
Sadly my throat has relapsed and my chest shot back to eleven suctioning periods again only time will tell when this will improve. One just doesn't know what DMD has in store next for me. Keeping positive is extremely difficult when you feel unwell.
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