This is copied from Narcolepsy Cataplexy Info Community on Facebook. It describes one of my biggest problems. Thanks to Brian Remmerde who is on the forefront of recommending anything that helps PWN.
-----------------------------------------------------------------------------------------------------------------
I didn't write this and I'm not sure who the original author is but it's very good. I saw it when a friend posted it, it's very good.
Take No offense, from this post.. But listen and learn from this amazing writer who put our disorder into action words! I am sharing this too educate and advocate for narcolepsy ! And sharing with my very supportive family and friends, but mostly wanted my #narcolepsynotalone friends to read this spot on note to help a friend !
( pwN) people with narcolepsy
****
I am sending this letter because (PWN) needed something to help you better understand some of the issues that he faces on a daily basis because of his narcolepsy.
I don’t know (PWN) 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 he hides as much of his suffering 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 he 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 he 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” he is struggling and needs your help. If the answer is “tired” he is on his last leg. Something more like “Crappy” is an indicator that, if you really care, you need to send him to bed and keep the kids quiet or take them outside or somewhere else so he can sleep and he probably actually needs more than that, but everyone needs to understand that you are only human too.
I can tell you that for him just getting through the day takes way more effort than everything that him or you have 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 narcolepsy. If he isn’t doing enough to help keep the house clean I guarantee he feels like a failure because of it but just doesn’t know how to handle it any better. When you have narcolepsy 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.
When you have narcolepsy 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 narcolepsy 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. 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 narcolepsy 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.
Another issue which is probably related to both the lack of focus and lack of linear thinking is the tendency people with narcolepsy have with finishing things before moving on to something else. Yep, it is pretty normal for someone with narcolepsy to have a house full of unfinished projects. Nagging them about it won’t help the situation. Anticipating it and helping them stay on track will.
People with narcolepsy 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 narcolepsy 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.
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 narcolepsy 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.
On top of all of the internal difficulties people with narcolepsy 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. I am constantly judging myself on my productivity (or now typically my lack thereof) and (PWN) is probably the same. He has probably become accustomed to being criticized for not trying hard enough by people who aren’t putting forth nearly the effort he is. When he appears to be sitting on the couch doing nothing he is probably wondering how it will be possible to accomplish everything that needs to be done. If he is still employed he is probably struggling more to keep up at his job than he lets on, and if he is no longer able to work he needs more emotional support than you can possibly imagine. If (PWN) is like almost every one of the 1,000-plus people with narcolepsy I have talked to in the past couple years he is constantly beating himself 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 he is crawling because he 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 narcolepsy 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 breath 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 narcolepsy 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 narcolepsy 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 narcolepsy-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.
(Optional paragraphs)
If this still leaves you thinking that (PWN) should be trying harder or you still might have a tendency to look down on him for his lack of performance look at it this way - How tired would you have to be to act the way he 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 (PWN) is less of a person than you? It is a pretty safe bet that he has already been to that point and beyond. Please go back and review my first promise to you.
In closing I have one request - I ask that you try to remember this letter next time you are at a family gathering. Try to remember to watch (PWN) here and there as he is sitting and talking to friends or relatives for hours. Has he held a smile on his face a lot of the time, and displayed interest in what everyone is saying and doing? If so he 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
No comments:
Post a Comment