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These words are my diary screaming out loud

Wednesday, June 25, 2014

A little more about Idiopathic Hypersomnia and how it affects me

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!!


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.


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."