It's been a while since I blogged, I know... I've been having some issues, primarily the one where I realized that my medication doesn't really work anymore. It's been super fun, or something. I had to re-establish care with the VA because other medication options were so cost-prohibitive on this crap insurance my company has stuck us with. I thought it was going to take until August to see a sleep doctor. Luckily, they had a cancellation so I was able to get in last week. I have a prescription for a new medication coming soon, and another overnight sleep study scheduled for next week to make sure nothing has changed in that department. Thank goodness he didn't want me to do the daytime one again too - that was pure torture the first time!
Anyway, as I mentioned in a previous post, these IH Facebook groups have really been helping me get a better grasp on the IH - understanding it, realizing that the meds haven't really been working that well for a little while, researching some possible options, and feeling like it actually CAN be better than it has been. On one of those facebook groups, a gentleman named Dean Jordheim shared this absolutely fantastic letter that he wrote for people who know / love / care about someone with IH. I know my readership isn't huge, but I figure at the very least, a few people can learn something, and as GI Joe used to tell us all when we were kids, knowing is half the battle. I've taken the liberty of adding some bolded areas to show where the IH is different with me than what he writes and to add my own thoughts, but I've left his words because what he writes about is present in many people and as we all know, everyone's different.
It's a bit long, but I greatly appreciate you reading!!
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Dear Reader,
I am sending this letter because Rebecca wanted
something to help you better understand some of the issues that she
faces on a daily basis because of Idiopathic Hypersomnia (IH).
I
don’t know Rebecca personally but I don’t have to. There is some
variation in how the disease affects people, but there are a lot of
similarities. The first thing I can promise you is that she hides as
much of her suffering (I hate this word, I really do. But the point is true) as possible because showing it would drag
everyone else down. This is commonly referred to as our “game face”.
You need to understand that if you ask “How are you?” the response you
get is relative to how she feels all the time so it doesn’t mean the
same as when you use the same words. If the response is “Good!” it
probably means that she is really frickin’ tired but is dealing with
it well enough to almost function like a normal person. There is also a
pretty good chance that it is a flat out lie. If the response is
something like “ok” or “fine” she is struggling and needs your help.
If the answer is “tired” she is on her last leg. Something more
like “Crappy” is an indicator that, if you really care, you need to send her to bed and keep the kids quiet or take them outside or
somewhere else so she can sleep and she probably actually needs
more than that, but everyone needs to understand that you are only human
too. (This is mostly true. I will almost always say good or some variation thereof. If I say something else, it means I'm having a rough go of it. Mostly, I probably just want you to cut me a little slack that day.)
I can tell you that for her just getting through the
day takes way more effort than the average person has to
accomplish throughout that day. I can tell you that doing the dishes,
making meals, keeping the house clean, mowing the lawn, and even things
as simple as folding laundry take two or three or four times more effort
than anyone who doesn’t have IH. If she isn’t doing enough to help
keep the house clean I guarantee she feels like a failure because of
it but just doesn’t know how to handle it any better. (Yes, yes, a thousand times yes.) When you have IH
your standards for how to do your job and take care of your home and
kids don’t drop, but living up to your own standards can become almost
impossible. (Again, yes. I am not lazy, I promise. I WANT to do things. I really do.)
When you have IH your body usually gets plenty of
sleep, but your brain is in a constant state of sleep deprivation.
Institutions don’t do experiments involving long-term sleep deprivation
because it causes physical and emotional damage. People with IH carry a
significant amount of sleep deprivation which only gets worse over time
because sleep doesn’t provide relief. The most common symptoms of sleep
deprivation are forgetfulness, memory issues in general, difficulties
with concentration, decision making, and overall ability to think
clearly. This happens because sleep deprivation directly affects the
frontal lobe of the brain where these things take place. (Note: Even
though I should be able to easily list these things because I talk about
them on a regular basis, I had to flip back to my list several times to
get them all included.) The extra effort required to focus on the issue
at hand makes it very easy to forget about things that are out of your
field of vision, causing problems with anything that resembles
multitasking. (Hence my heavy reliance on pop up reminders and lists.) The emotional results of sleep deprivation are probably
the easiest to see though. I am sure you are familiar with how easy it
is to get cranky when you are tired? Now imagine fighting off this
crankiness every minute that you are awake.
Most normal people
are accustomed to linear thinking. In planning an activity, a day, or
just getting ready to go somewhere they have the ability to think of
each thing that needs to be done in order and automatically add up how
long each step is likely to take, establish an expected time frame, and
build in some extra time for things that take longer than expected or
other things that pop up. When you have IH your head is often a blur of
thoughts and instead of mentally lining steps up in chronological order
everything just blurs together like your grandma’s
once-around-the-kitchen casserole so nothing goes as planned and you
wind up being late for things regardless of how important they are to
you and make time management in general ridiculously difficult. (I don't always have too much trouble with this, as long as I stick to the same routine. When things change or I get flustered or I have to deviate from the norm, that's where I have issues. Like this morning, when my husband said he would take the car in and I had planned on doing it and realized that I needed to get moving or miss my shuttle and left my wedding rings on my dresser. Luckily, I was able to get back in and grab them and still make my shuttle. Sometimes, this involves silly things like forgetting to wash my face in the shower if I do things in the wrong order, or forgetting to brush my teeth in the morning if I wake up late or realize that the shirt I had pulled out to wear the night before has a stain or a hole. Sometimes, I forget to take my medicine on the weekends because I always take it at work during the week. Lots of examples of this... Some of it is OCD, but some if it is having to stick to the routine so I remember to do everything I need to do)
Another issue which is probably related to both the lack of focus and
lack of linear thinking (or maybe not) is the tendency people with IH
have with finishing things before moving on to something else. Yep, it
is pretty normal for someone with IH to have a house full of unfinished
projects. (If you've been to my house, you know this is me.) Nagging them about it won’t help the situation. Anticipating
it and helping them stay on track will. (My husband has gotten pretty good at this - giving me that push I need to get through. He rocks.)
People with IH
typically get meds to help them with energy, mental clarity, etc, but
they rarely do the entire job because there is no replacement for
restorative sleep. Healthy people can’t stop sleeping at night and take a
pill in it’s place and people with IH are no different. These meds help
some people gain mental clarity but they are still struggling to stay
awake most of the time. They help some people stay awake but do nothing
to help with clarity and in many cases actually make it worse. A very
good friend of mine says: “My meds just help me do stupid stuff faster.”
and this is really a great description of how they affect a lot of us.
They may provide the energy to do things, but they take away a person’s
ability to channel that energy properly. Have you ever pulled an
all-nighter and relied on high doses of caffeine to get you through the
next day? Yes you made it through the day and you accomplished some
stuff, but do you remember how you felt all day? Were you really you?
How many days in a row do you think you could do that? That is just
about exactly how I feel when my meds are working their best. (Welcome to every day of my life right now. Hopefully when the new meds get here that will change a little bit...)
The
meds also tend to multiply any existing weaknesses a person has. Some
of those weaknesses are physical ailments, but more common it is mental
or emotional issues and sometimes they create new issues in people who
have never had any. They commonly create or multiply issues like
anxiety, and they can mess with the rewards system in the brain to cause
obsessive or compulsive behaviors causing a much higher percentage of
people on stimulants to struggle with issues like compulsive shopping or
hoarding than normal people. Because of some similarly described
symptoms, people with IH are often told that they are tired because they
have major depression. Yes it is a fact that a lot of us have some
depression, but that’s because it’s pretty tough to feel like total crap
all day every day without letting it get you down. (My OCD mostly existed before the meds, as anyone who knew me pre-2009 will tell you :))
On top of all
of the internal difficulties people with IH face they have a regular
flow of external difficulties because other people just don’t get it. As
a disabled workaholic the thing that really gets to me is the way
people tend to think we are lazy. (Yes. See this post.) I am constantly judging myself on my
productivity (or now typically my lack thereof) and Rebecca is probably
the same. Sshe has probably become accustomed to being criticized for
not trying hard enough by people who aren’t putting forth nearly the
effort she is. When she appears to be sitting on the couch doing
nothing she is probably wondering how it will be possible to
accomplish everything that needs to be done. If he is still employed she is probably struggling more to keep up at her job than she lets on, and if she is no longer able to work she needs
more emotional support than you can possibly imagine. If Rebecca is like
almost every one of the 1,000-plus people with IH I have talked to in
the past couple years she is constantly beating herself up for
what feels like constant failure. Getting criticized for screwing up or
not trying hard enough isn’t a slap in the face, it is a kick in the
ribs when she is crawling because she doesn’t have the strength to
stand.
I have often been told that I just need learn to cope
like other people with other diseases do so I can function like a normal
adult. The problem is that when you have IH the disease lies right
where a person’s ability to cope is supposed to come from, so getting
irritated with them for not functioning right is like getting irritated
with a paraplegic for not being able to walk or someone with emphysema
for not being able to breathe right.
There are many things that
are very simple for healthy people, many of which are done with little
or no thought at all, which are very difficult for someone with IH and
no matter how hard you look at them through your own eyes, from your
perspective, these things aren’t going to make sense. That’s why you
need to step out of your perspective and look at things from another
angle. When people are told about something someone else is dealing
with they have a natural tendency to find something in their mind that
they are familiar with and use it as a sort of reference point. When
someone says they have a headache you probably think about how it feels
when you have a headache and continue the conversation with that in
mind. When someone describes a problem that you have never experienced
you probably think about someone else you know or have heard about with a
similar problem and set that person as a reference point for the
difficulty the person you are talking to is facing and compare
everything you are hearing to that other person. The natural responses
those two scenarios tend to make it more difficult for us to really
understand what someone is going through if they are dealing with an
extreme case of those symptoms because we want to try to put ourselves
in their shoes and it just doesn’t work because regardless of how
sincerely we want to understand we don’t know what it’s like and we
can’t really imagine it. That is why if you are talking to someone with
IH you have to push aside everything you know about how it feels to be
tired based on your experiences, accept that you don’t and hopefully
never will know what it’s like to be IH-level tired all day every day,
and take what that person says at face value because the chances of it
being exaggerated are very slim.
In closing I have one request - I
ask that you try to remember this letter next time you are at a family
(I include non-relatives in the term family, of course) gathering. Try to remember to watch Rebecca here and there as she is
sitting and talking to friends or relatives for hours. Has she held a
smile on her face a lot of the time, and displayed interest in what
everyone is saying and doing? If so she probably deserves an Oscar
because to sustain that act and hold back all of the tired crappiness
inside takes a hell of an effort and it should not be overlooked.
If this still leaves you thinking that Rebecca should be trying harder
or you still might have a tendency to look down on her for her
lack of performance look at it this way - How tired would you have to be
to act the way she does? It would have to be bad, right? You would
suck it up and give it every last bit of strength you have before
admitting you couldn’t do it anymore? Do you really think Rebecca is
less of a person than you? It is a pretty safe bet that she has
already been to that point and beyond. Please go back and review my
first promise to you.
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Bottom line, I bust my ass to power through this condition. I don't think I'm suffering from IH - I'm living with it, and I refuse to let it define me. Does it suck, quite often? Absolutely. Do I have breakdowns sometimes because I'm so frustrated? Had 2 last week. Do I feel like I'm letting down the people I'm closest to because I don't have the energy to do everything I want to do, or go to everything I'm invited to. Do I feel like a real a-hole when I bag out of something at the last minute because I am just too tired? You bet I do. But hopefully this gives a little bit of perspective. Thanks again to Dean for putting it all on "paper."
