Dear Friend,
Do you remember that time we had big
plans to do something amazing on the weekend, and I told you at the last minute
that I really wanted to go, but I just couldn’t do it? I remember it because it
was hard for me to make the decision to take care of myself instead of going to
do something fun that I was really looking forward to. I spent the day making
sure I had healthy food lined up for the week. I took a few short naps. I drank
lots of water. I meditated and arranged my calendar for the week so I would not
miss any appointments. Forget to pick up my prescriptions, or miss a due date
for my bills.
It was a really boring day and I
kept thinking about how much I would have rather been with you, but I am
working really hard on self-care. That doesn’t mean that I can’t have fun
anymore. I still want to do fun things with you. I still want to have a social
life. It does mean that I am learning to see what tips the balance in my life,
and I’m learning to say, “No.” Here is what I wish you understood:
Narcolepsy
is not the same as being lazy. I know that
you have to do all the same types of chores that I have to do, and you can get
them done in the middle of your work week and you expect me to be able to do
the same. But sometimes that just isn’t possible.
You see, my body attacked the Orexin (hypocretin) in my brain. Orexin is
responsible for regulating so many things that I took for granted before it was
destroyed, like arousal, wakefulness, and appetite. While it may seem like I
should wake up feeling amazing after 10 hours of sleep, my sleep is messed up too. My brain doesn’t do what it should when
I am sleeping either, and sometimes I lay awake half the night trying to get
back to sleep. It’s a rather ironic and frustrating situation to be in.
The
sleepiness I feel is not avoidable. When
I apologize in the middle of our conversation because my eyelids are drooping,
it is not that I am bored with our discussion. If I excuse myself to sleep for
a few minutes, it’s because I care about what you are saying and I want to
remember it later. The sleepiness of narcolepsy is not something I can just
push through.
Sleepiness comes roaring through my
head like a freight train, and if I try to fight it off, I end up with a
massive headache, and my brain will feel stuffed full of cotton so nothing
works as it should. Sometimes I can’t even remember where I was or what I did
during that fight behind my eyelids. So while I am able to sit upright and
appear awake, it would be much more productive for me to just take the nap my
body is demanding.
Of course, I can take medication for
my sleepiness, but while it has the ability to keep my eyes open, it does little for the cottony fog and lack
of ability to focus. If I want to clear the fog, I have to close my eyes
and sleep for a while. Many people think napping every day is luxury, but when
it is just as necessary as using the bathroom, it feels more like an
inconvenience. These waves of
sleepiness are unpredictable. While they often are correlated with
eating, they can appear out of nowhere for seemingly no reason at all.
During an episode like this, I am
unable to drive, or possibly walk effectively. My cataplexy symptoms will
increase and it could be dangerous for me to push through the sleepiness. This
makes it difficult for me to maintain a schedule. Why it may seem simple to set
aside an hour to have coffee with you, I feel awful when I have to call and
cancel on short notice when I realize I am not able to drive, or I am too foggy
to be mentally present for our conversation.
Cataplexy
has emotional consequences I can’t even
begin to express. Cataplexy is a sudden muscle weakness that usually occurs
when experiencing strong emotions. It is different for different people, but in
my case generally occurs in my hands, arms, and jaw. This means I may begin
slurring my words or something may slip out of my hands when I laugh or feel
some other emotion. In more severe cases, it can result in a complete collapse
to the floor where I remain unable to move or speak for a matter of seconds or
even minutes. It’s a vulnerable position to be in so you can imagine why I work
so hard to avoid situations where I may experience this. It puts huge stress on
my social life, and emotionally it is a large weight I carry around.
Sometimes, when we talk about this,
I am moody and irritable and may say things I don’t mean. I get so frustrated with my narcolepsy,
but I end up taking it out on myself and other people. It really interferes
with my moods, but when I am well rested, I feel guilty for the way I treated
you when I was tired. It’s difficult to deal with my emotions and talk about
them with you because I know it’s not easy to understand my situation. I don’t
want to make excuses for my behavior. I want to find a way to manage my
emotions, and self-care is the tool I am using now.
I am not
asking you to completely understand. I
just want you to know that I am doing my best. It’s challenging to live in a
body that I don’t trust and cannot control. It is also emotionally draining to
try to conform to all of the expectations society has placed on me. Maybe you
don’t always see how much narcolepsy is affecting my life because when I go out
for social occasions I try to be at my best. Behind the scenes, there are times
when I can’t gather my thoughts enough to finish a sentence.
I can’t think of the simplest words, and I cannot
focus on even the most basic of tasks like brushing my teeth without getting
distracted. Sometimes, I need a little
support, and I don’t know how to ask for it. I may even turn it down if
you offered because like anyone else I have pride and want to feel independent.
I am working on improving that. As my friend, you may be wondering what you can
do to help.
Calling me up to listen to how
things are going is always appreciated. If we make plans, maybe sometimes we
can have coffee at my house instead of across town, and if my dishes are not
washed and I haven’t taken a shower please don’t judge me. I’m doing my best.
Instead of telling me what you have read or seen or heard helps with my type of
symptoms, ask me what I want and what I need more support with. I know your
suggestions come from a place of love. If one more well-meaning friend tells me
exercise will help me, I may scream.
You can
ask me questions about my narcolepsy.
While I don’t want our relationship to be all about me and my diagnosis, I could
really use a friend that understands what I am dealing with. Ask me what it
feels like. I don’t need you to say you know exactly how I feel. It would be
better if you say the opposite and tell me you can’t imagine how I feel since
you haven’t experienced it.
I would love to listen to some of
your hard to talk about issues. Just because you don’t have narcolepsy doesn’t
mean you don’t have issues that are difficult. I am here to listen as well and
I won’t judge because I know how it feels to be judged. I crave real social
connection not the ordinary small talk that I can have with anyone. I want to
engage in intense conversations with you and feel an important connection
between us.
So please don’t write me off as a
friend because I’ve canceled the last few times we made plans. Please don’t
think I’m lazy or unmotivated. I am doing my best. All I ask from you is that
you do your best to understand. I am not narcolepsy, but it has a bigger impact
on my life than I would like it to. Taking care of me is the best way I know
how to reduce this impact. Your support means a great deal to me. Thanks for
reading this letter through to the end. I’d like to meet with you and talk
about any questions you may have, or about what is happening in your life that
you want to talk about.
Love,
A Person with Narcolepsy (PWR)
“Sometimes I woke up in bed with this feeling
that there was someone in the room, someone who wanted to do something really
horrible to me, and I would find that I couldn’t move at all.” (Lisa)[i]
[i] Adapted from: “Letter to a friend from a
PWN (Person with Narcolepsy)” by Kayla
Douglas
No comments:
Post a Comment