These past few weeks have been horrible to say the least. I should
be buying shares in Kleenex with all the tissues I’ve gone through with my
constant crying! The final weeks to the end of the year are never easy for
anybody. We all get tired and stressed, hanging out for our much needed break.
This year I seem to be copping it twice as bad as normal. It’s been a long,
hard year and I just want it finished with. It’s all making me more exhausted
than normal, but considering my standard state is exhausted, you can imagine
how I feel now!
In feeling as down as I have been I decided to do some more
research into narcolepsy. Oddly enough, it’s actually made me feel better. When
faced with a difficult illness whether it be physical or mental, we can often
think and feel that we’re alone. Whist I have the most understanding family and
partner, I have been feeling lost and alone – not even fully understanding the
illness myself. So today I went on the search of information from medical organisations
and fellow sufferers. As a newly diagnosed narcoleptic, I discovered that I
knew surprisingly little about the illness I’ve carried with me for over 1/3 of
my life.
For starters, I wasn’t aware that as a narcoleptic I am actually
missing cells in my brain *cue the dumb jokes*. In “normal” people, there are
70,000 cells in the hypothalamus area of the brain containing the chemical hypocretin
(aka orexin). For those of us with narcolepsy, it is between 3,000 and 10,000. Autopsies
of people who had narcolepsy have shown scar tissue in the areas of the
hypothalamus where hypocretin brain cells used to be. So essentially this means
we’re all born with these cells, but for some reason they’ve later died.
Another thing I learnt in my Googling was an interesting
statement which would help me to explain to people just how tired I feel. It’s
been said that the average person would have to stay awake for 48-72 hours
before they would feel the strong call to sleep that I feel daily. There’s been
times where I’ve had to go to the toilets at work so I can close my eyes and
attempt to recharge because I just cannot physically keep my eyes open any
longer.
When I don’t have the luxury to sleep in order to recharge,
I instead turn to food. When your body is running low on fuel, it will
naturally crave energy rich foods. This in turn leads me to tears as I suddenly
fail to be able to do up my size 10 pants at 6am this morning. I’m now faced
with attempting to cut back on what I eat as well as find the energy to take
the dog for a walk. Not easy.
Thankfully, however, my sleep specialist has increased the
dosage of my medication. So as of tomorrow I’ll hopefully start to gain a bit
more energy to keep me awake during the day. This isn’t to say I’ll be able to
party until 4am, but I will be less inclined to need to nap multiple times a
day.
Hopefully this new research will help me feel less useless,
guilty and lazy. It won’t be easy to change my own thoughts and feelings, but I
can but try…
