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Sleep Awareness Week!
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Caprice_WebMD_Staff posted:
This week is 'Sleep Awareness Week' and what I'm wondering is what do you wish others would understand about your own sleep issues? Have you been frustrated when others just don't get it and/or don't support you?
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sleepingmikeawake responded:
Hi,
It is frustrating when the majority of people don't understand or even belittle the difficulty of being prepetually tired and sleepy to the point of collapse. Being looked at as if we were some what less of a person.
I am a Electronics Tech. (now), I have had to make a few life changes in the past 25 years because of the onslaught of Narcolepsy w/C,HH,Sp, and Mixed Apnea. I have had a MSLT and sleepstudy done 25 years ago and had another in 2009. It has greatly affected my quality of life and is running me into the ground.
The battle to "keep up" in the work-force has been a long one and not without its' losses. I have tried almost everything chemically but have found that eventually the treatments become intollerable or they simply stop working and the amounts of the Med. cause other neurological problems. This past year I have ended up in the Hospital 3 times. all the symptoms of Gall bladder attack but nothing found but a "fat Liver with a syst on it."
I have been diagnosed with IBS now and I have given the diet change more than 8 months, adding the daily fiber that is prescribed...this only makes other problems which add to the stress of the sleep disorder which in turn is probably the root cause of the IBS along with having spinal stenosis and the ill effects of all the strain that sleep deprivation and REM intrusions cause....only to hear a coworker say:"well ya need to go to bed earlier and get more sleep."
(That kinda tears at my heart.) Especially when you know you are doing everything you can to live day in and day out with this disorder and stay safe and not cross the lines when driving.
It has come to the point of trying the only thing I havn't tried, that is giving up on staying in the work-force and just sleep when the attacks happen. I am sure mentally I'd probably be better off. I am a member of a really good support group on line. Which I have found to be very helpful in communicating on an understandable plane. I am always looking for ways to help others that walk in the fog of sleep. That's why I replied to this post. We call people that don't know how it is, "Norms". They do not understand and unless they suffer it themselves they wont get it. It is because sleep is taken for granted and so abused in all of it's forms. To onlookers it goes on unseen or ignored or passed off as burning both ends of the candle. It is a silent, almost invisible disorder, until some one gets hurt. Then it is elivated to irresponsableness on the part of the person who has the disorder and that is just the result of scociety not recognising that sleep disorders are serious and life threatning.
To much frustration takes it's toll...It is so hard to keep emotions under control when left unchecked trigger Cataplexy in some form or another or a full on sleep attack or a REM "dream" intrusion happens in mid sentence.
I had heard about Drs saying that narcoleptics don't fall asleep in their plate. Well, I have. Recently at a hospital stay for my IBS(3days on clear liquid diet) ...when they brought me some food that tased so good I let my emotions go and just the taste of good food caused me to go into a C attack. Yep, right in front of the Nurses, face down in my food. Life with a sleep disorder is never dull, and the struggle to cope is a constant struggle. Having some one to get the word out there to let Normal people know that we are out there and a lot of us are still working and behind the wheel of an automobile.
Might just make them think, even just for a second.
Ta Ta
 
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Caprice_WebMD_Staff replied to sleepingmikeawake's response:
Hi Mike and welcome to WebMD,

I've rarely read such a great rundown of how severely a sleep disorder than impact one's life.

I don't have nearly the sleep issues that you describe but I could still relate to much of what you said. And I expect others here will as well.

Thank you for taking the time to share all of this with us here. I hope you'll stick around.
 
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pixe5 replied to sleepingmikeawake's response:
Mike,

I am sooo sorry for what you are going through and people not acknowleging your difficulties. It is amazing how insensitive people can be.

I don't want to sound like I am putting you down but it is not safe for you to be driving. I gave that up years ago because of getting into accidents. I know it is hard to be without a car but perhaps you could carpool to work. I myself use the dial-a-ride service for the disabled to get places. (All you need is a doctor's note.) They also have in my community a service called Access also for the disabled.

If you are wondering if you should continue working just remember that there is no shame in being on disability. A lot of "norms" would disagree but you have to do what is best for you. It sounds like you may be having health issues that are due to or made worse by stress. If working is making you stressed out then maybe you need to take some time off.

I hope this helps.
 
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pixe5 responded:
Good question Caprice.

I have sleep apnea, fibromyalgia, chronic fatigue and bipolar disorder. Most of the people in my life are supportive but there are still those who consider me to be lazy and that I am faking my problems to get government disability.

They don't get that one of the worst days in my life was when I had to stop working. Of course if I say that then they just think I am trying to manipulate them into feeling sorry for me. It is a no-win-situation.

I am learning that sometimes it is best just to ignore those people who don't get it because if I do try to explain I am labeled a liar and that I am just making excuses. I want to scream at them so that they understand my misery but the truth is that I cannot allow myself to be continuely upset by their self-imposed ignorance.

I say "self-imposed" because the information is out there but they don't want to educate themselves.
 
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ragtimek replied to sleepingmikeawake's response:
What online support group are you refering to? I would be nice to have some constructive information. I feel your pain. It would be nice if everyone would realize that all sickness affect people differently and with varying severity.

I know your problems at work. I was told by my manager at the association where I work that I had an attendance problem and if I missed another day I would be written up. I still had sicktime on the books. Due to this, I have not been able to take a sick day for nearly a year and half. The real irony is that my manager had health issues this year and you never knew when she would be here or not. And in my case never heard anything back to explain where she was - ill, in treatment etc. One time she was out of the office (supposedly) for a doctor's appointment, I ran in to her at lunch coming out of Bed, Bath and Beyond with a number of bags. I was unaware that BBB had opened a cancer treatment facility. Also, there has apparently been no issue with her 3 vacations. I didnt say anything; but since I am not wimpering at your feet, I now have empathy problems. I feel for her disease; but I have no patience for hypocrits.

The most irritating portion is my doctor. I relocated to a new area prior to this and my doctor will not listen to what I am saying. She has diagnosed menopause and will not consider any other options. I believe it is possible to have multiple health issues - I have heard of others. She also appears convinces that I am trying to get sleeping pill when I have already told her 3 times I am not interested. I believe that when someone tells you that they have not slept for 2, 3 or 4 days and are actually starting to experience memory lapses and mild hallucination it should be taken seriously. Unfortunately, I live in a rural area and do not have many options. This office even had the nerve to post signage indicating the if were confrontational with the staff (by their definition) you would be told to leave immediately, (without referred to another medical facility) and charged for the visit.

Even well meaning people miss the point. I have been told by numerous people that I should (fill in the blank). I have laid in bed for three day without food or water because I did not have the strength to get up.

I have "toughed" through and have seen some improvement. I need my job. I still have time without sleep. Last week, I only slept for one hour on Sunday and no time on Monday. I did fall asleep on tuesday and slept in spurts for a couple of hours a piece. This is the norm now.

I am do not know what to do. I need valid medical advice. Despite a history of heart disease on both sides of my family, she has never done anything other than listen to my chest. Diabetes also runs in the family. Since my vitals (what she took) were normal except for slightly elevate blood pressure, that has been the end of it. Many years ago I had a severe case of mono and was in the hospital for a week. I developed both jaundice and hepatitus. She has not pursued this. Based on my own reading, I requested a thyroid test. She claims to have conducted the test; but cannot tell me anything more other than I am fine. Meanwhile, I have developed a number of other health issued which have not been addressed. I need my insurance to pay and I need my doctor to refer. I would love a good source for information about doctors by region - I cannot keep going through this.

Sorry for the rant - if misery loves company, you have that.
 
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Caprice_WebMD_Staff replied to pixe5's response:
I understand how very difficult it is when you realize you can't work the way you used to or at all. (I had a few years like that as well, and then had to find a new way to keep a roof over my head.)

Keep on keepin' on, Pixe.
 
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Caprice_WebMD_Staff replied to ragtimek's response:
Hi Ragtimek and welcome to WebMD,

Thank you for sharing your experiences and I hope that others here have some suggestions for you.
 
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ragtimek replied to Caprice_WebMD_Staff's response:
Thanks. I am looking forward to hearing from others.


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