Thursday, November 1, 2012

When People Don't Understand Something...

...they have no compassion. NONE.

I have a feeling this will be one of those blogs in which everyone reads and no one responds, Im guessing because, people just feel unfomfortable?? SMH

So, I am in a support group on Facebook for those of us with Idiopathic Hypersomnia. And a young college student posted below:

"Need help please. I cannot wake up on my own, I fear losing my job @ this point, Ive already been through the EEO process and have a reasonable accommodation that says I need to call or report to duty within 1 hour of scheduled time. The problem is my Mom is frustrated with waking me up & today she just left me in bed & I missed a whole ay of work (again)....and I cannot find any way to get up on my own... I have 7 alarms including 2 sonic boom with bed shakers and the 220 dB screaming meanie... I would do anything, Ive thought about a dog shock collar, but cannot figure out how to set it off at a certain time. I am currently on Nuvigil & Ritalin. My doctor says Xyrem wont help. I need some sort of help... I'm desperate" 

I read this, and tears burned my eyes and I felt sooo bad for her because I understand. I understand how it feels when people "don't get it" about needing help waking up. Or they don't understand why you cant just pop up like they do. People's lack of understanding and not getting it or maybe not even wanting to get it, leads them to be COMPASSIONLESS. It may actually take some coaxing, shaking, SOMETHING (except pouring water on my face) to pull you out of sleep paralysis or sleep drunkeness.. or that you may need that room to sleep without hearing the following:

Well, if you don't get up, you will get left. (Oh, stress about getting left will INCREASE the likelihood of not being able to awaken.)

 Im not helping you get up because I can get up just fine.

The whispers, I would hear from the other room,

"man, she is just lazy, she isn't trying to take care of her kid, I dont understand why she is always sleep or trying to sleep"

Funny thing about this thing called sleep paralysis.. Most times, you can still HEAR.. Sleep paralysis for many is usually the inability to move or speak, your brain is technically sleep, but you may still have the ability to HEAR.

'Well, Im sleepy and tired too and I get up just fine."

Nawwww, this aint where its at either. The biggest issues for those with Idiopathic Hypersomnia is, you can sleep that 8-10 hours and still feel as if you have been awake for 48 hours and then took some Benadryl and feel like this... EVERYDAY of your life.

 "Well, she must be depressed." 

Nope. Usually I wasn't. Although depression and hypersomnia are linked for some, people are usually misdiagnosed with depression. From what I have discovered, sufferers will become depressed because of the effects of hypersomnia and the inability to get stuff accomplished. Which also makes you feel like what people are saying about you are true. That you are lazy, unmotivated, lack will power, etc... and this type of depression that is caused by the effects of having hypersomnia, will cause stress and further the need for sleep. Also, the more you are not able to get done, the more you become overwhelmed by ALL of it, the more likely you are to crash to a sleep attack. A vicious little cycle it is..

"Well, when the alarm clock goes off, just get up." 

 Well, if we actually HEARD the alarm clock in the first place, I probably wouldn't be writing this blog right now. IJS And ummmm no... IF we hit the snooze button, chances are, we aren't aware that we have done so.

The onset for this is usually in the teenage years and is usually not diagnosed until it has become life altering and usually unbearable sometime in the late 20s-30s. Imagine that. A lifetime of feeling like a lazy savant only to not have it discovered until it is UNBEARABLE. Im learning that many people take advantage of having the ability to wake up. Be extremely thankful if you have an internal alarm clock to wake you up early every morning ,or you can get up the first time you hear the alarm clock and better yet, be thankful you can actually HEAR the alarm clock.

I've been a little quiet lately. Quiet about myself. Sooo here is what's going on..

I had to take an emergency medical leave of absence from work because I was not able to wake up and was consistently sleeping past my scheduled start time and would either be a couple of hours late, or so drunk with sleep and having a severe case of sleep paralysis, that I couldn't get out the bed and was calling off sick PAST the time I was due in for work. They got mad at me due to this scenario because they (understandably) were unable to rely on what time I would be able to show up to work. On the last occasion of not being able to get up and called off past the start of my shift, once I was able to get up, went to the doc and he agreed, I needed to sit out for a few weeks while the meds kick in. And now the job is mad at me for abruptly leaving and are making claims of not holding my positions. Yea. OK.

And yes, these are the same meds I was having a devil of a time getting because of the hard time Express Scripts was giving me for approval. I sat there and watch the doc wrestle the approval from them over the phone.

Once I saw the cost of the meds, I then understood why they were giving me such a hard time.

Soooo, I say all this to say, I don't want your pity, or for you to feel sorry for me, BUT if you can't pray for me, have compassion, understanding and can't be of any assistance or help, then please, stay away from me. Right now, I am forced to allow some stuff to go on that I would rather not be in the position to HAVE to allow and Im not too inclined to continue to witness people's "dismissal" attitudes about this thing that finally has a name.

 And yes, I am going to beat this thing!!

"Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has NO ONE to help them up." -Ecclesiastes 4:8-10

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