Slumber Society

A little about me and why I started Slumber Society (Sleep Disorder Support Group)

My name is cowgrl Crystal.  In Real Life I’m known as Linda.  I’m from Vancouver, WA USA.  I hope this will give you a brief idea of who I am and what I hope to achieve by creating this website and the Sleep Disorders Support group on Second Life that it represents.

I was diagnosed with Narcolepsy, Obstructive Sleep Apnea and Excessive Daytime Sleepiness in September of 2003, prior to that I had been a Commercial Transit Driver for 17 years and a School Bus Driver and School Bus Driver Trainer for the State of Washington.  Since 1987 my schedule was normally to get up and go to work at 4:00 AM and I would drive in heavy traffic from 8 to 10 hours per day.  The last year that I was working I would wake up feeling rested and alert at 4:00 AM, but by 6:30 AM or so I was so tired I could barely stay awake.  I thought I must just not be getting enough sleep, so would try to get more.  Sometimes my boyfriend would have to wake me up in the morning as I would sleep right thru my alarm.  I kept going to work, thinking I was just tired, but I began to feel like I was reaching points along my route and didn’t remember passing other points along the way.  Even though we are technically not supposed to carry on conversations with our passengers, I made it a point to converse and become friendly with the passengers who sat in the front seat every day.  If I felt myself getting sleepy, I would make a comment to them, and in that way I think I was trying to trick my brain into staying awake.  I mentioned this problem to my doctor on one of my routine visits, but she didn’t think it was anything unusual.  I didn’t “fit the profile” of someone with a Sleep Disorder.  Sooo…… I kept driving until one day in June of 2003 I rear-ended a car.  I realized it was stopped and was able to lock up the brakes on the bus and slide to a stop, but not in time to avoid hitting him.  No one was hurt, and as it turned out the driver of the car didn’t have a Drivers License or Vehicle Insurance, so for some reason he went to jail and I continued on my way.  But now I was really scared.  Had I fallen asleep momentarily, why didn’t I get stopped in time, what if I had been going faster?

That afternoon I went to my doctor and insisted that something was wrong.  She still said I didn’t fit the “profile” for someone with Sleep Apnea but she agreed to refer me to a different doctor to see what he thought.  At the time I had no idea what was to come.  I went to my appointment, it was with a Neurologist, we chatted for a bit and he asked me many questions.  I told him about having these horrible nightmares, waking up screaming, waking up and not being able to move.  Later I was to learn that all of these are symptoms of Narcolepsy.  At the time, I just thought they were normal.  He told me he would schedule me for a Sleep Study or Polysomnogram (PSG).  I had to be off of all my medications for 1 month and had to be caffeine free for a few days.

I didn’t want anyone to worry any of my friends, so I didn’t tell anyone that I myself was worried.  I was scheduled to go on vacation and always go to the Pendleton Roundup.  It is a big Rodeo in Pendleton, Oregon.  Being off my medications was very stressful, and by the time vacation was over I was beginning to feel really uptight.  I didn’t know how I would be coming out of the Sleep Study, so I asked someone to take me and pick me up the next day.  That was the first time I had told anyone that I was going in for some tests.  At the time I had no idea how my life was going to change over the next few days.

I went to the Sleep Lab and the people were very nice, made me feel really comfortable, although I had no idea what they were checking for.  I’d never really thought much about what these tests were for.  I got hooked up to all the equipment, and was surprised that I had no problem falling asleep.  At about midnight I was woken up and given a CPAP (Continuous Positive Airway Pressure) machine.

The next morning I was given my own CPAP (Continuous Positive Airway Pressure) machine and told to use it for the next 30 days and then I would be scheduled for another Sleep Study and MSLT (Multiple Sleep Latency Test).  A Multiple Sleep Latency Test or MSLT is designed to measure the degree of sleep tendency or sleepiness in a given patient. This test is conducted during the day following a routine PSG and features a series of up to 5 naps, each lasting usually less than 30 minutes that are timed to start every two hours during the day. For example, 10 am, 12(noon), 2 pm, 4 pm and 6 pm represent a possible nap schedule.

I had pretty good luck adjusting to the CPAP machine, and used it consistently for the next 30 days.  I was still off work pending a final diagnosis.  I went back to the Sleep Lab after 30 days, and again got hooked up to all the probes that monitor everything.  I kind of knew what to expect this time, so maybe it was a little easier.  I slept thru the night, and again stayed the next day for the MSLT.  I had talked quite a bit with one of the sleep technicians the night before while getting hooked up to all the probes about my job and my concerns about the results of this test and how they would impact my Commercial Drivers License.  As I got ready to leave the Sleep Lab the next day after my 4 naps she came out of the office and told me that as a technician she is not supposed to tell us anything about our test results.  Technicians are supposed to just let us leave the Sleep Lab and wait for our doctor to contact us.  But because she knew that I was a Commercial Driver and also that as a single person I was really concerned about keeping my job depending on what the diagnosis was.  She very nicely told me that my tests were so Black and White that I had better start looking for a different job as I would never be going back to driving commercially. 

You know, we find it really easy to complain about our jobs, how we may or may not like them.  How the hours are not great or the pay could be better, etc.  But when you are suddenly confronted with the fact that you don’t have a job anymore;  Wow!!!  That’s pretty scary.  I was 54 years old, I’d done the same type of job for over 25 years and I had a high school education.  What was I going to do?  I immediately started crying.  That fixes everything doesn’t it?  I had never imagined this happening when I went to the doctor and complained about being tired all the time.

I never did get to go back to work.  I had gone on vacation in August, and now it was November and I was unemployed.  I had never told anyone at work what was going on as I really didn’t know when I went on vacation that I would never be back.  If anyone saw me I looked fine and didn’t appear to be sick, so I imagine everyone thought I would be back soon.  I never heard from any of my co-workers or supervisors and at the time I really didn’t know how to explain what was wrong with me, so I avoided talking to anyone about it.  For many months I felt really bad that I no longer had my friends that I had had for so many years.  I felt really isolated as I have had a job since I was 16 years old and suddenly I found myself without one. 

When I reach the age of 65 I will have a pretty good retirement from the State of Washington, and I knew that I could draw my retirement early if I needed to.  I called them on Monday morning and found out that if I wanted to draw my retirement I would get $300.00 per month.  I thought you’ve got to be kidding, who can live on that?  I owned my own home, a car, motor-home, two horses, numerous computers and sewing machines.  So obviously I had way too many assets for any kind of assistance.  I was pretty scared.  Was I going to lose everything I had worked so many years for?

Thankfully I have some pretty incredible friends.  We have been friends for over 20 years, and we seem to stick together no matter what.  They didn’t understand the Narcolepsy thing anymore than I did, but they knew me and they cared.  I couldn’t stop wondering what Narcolepsy was and how did I get it and what did it mean to the rest of my life.  The doctors didn’t really have much information to give me other than prescribing some pills, which I dutifully took.  At the time, I don’t know if I thought they did much good or not, but I’m a good patient and I took them.  I had a boyfriend at this time also and he was really good about supporting my use of the CPAP machine.  If I fell asleep without it he would wake me up and remind me to put it on.  I really appreciated this support as I required a full face mask, and to say the least it is not very sexy looking.  But we made a joke of it and I’d just say “if you want to kiss me good night, do it now cause I’m about to turn into Darth Vader”.  Narcolepsy was another thing.  As one of those Invisible Disabilities it was a little harder for him and anyone else to understand.  He thought that if I just got a little more sleep or more regular sleep I would be better, and because I wasn’t he assumed that I was just happy to let the doctors medicate me.  Unfortunately I think, the word SLEEP is used too often in describing Narcolepsy, Excessive Daytime Sleepiness, and other sleep related disorders.  Yes, SLEEP is a symptom of these conditions, but SLEEP is not the issue.  No matter how much SLEEP we get, we don’t feel rested.  No matter how much SLEEP we get we still cannot get thru the day without our medications.  I wish that I could describe the feeling of that incredible weight on my brain that just forces me to fall asleep or prevents me from even thinking clearly.  I’m not tired, at least my body is not tired, but my brain is weighing a thousand pounds.

I spent hours every day on the Internet searching for answers to all my questions.  What was Narcolepsy, what was Excessive Daytime Sleepiness, what is Sleep Apnea?  How did I get these conditions? 

I found the Stanford University Website very helpful, and on that site I found many links to other sites that gave me the support to keep going. 

I found a website called “Talk About Sleep” that had weekly chats.  In fact they had a chat nearly every day relating to some aspect of sleep.  The chats are all moderated, so I felt the information I was getting was reliable.  The chat hosts all have one or more of the sleep disorders that the chat is targeting, so you know that they understand what you are feeling. 

The Narcolepsy Network was another source of great information.  I couldn’t afford to join right away, but I’m a member now and with their help, I had hoped to get a Support Group started in the Vancouver, Washington and Portland, Oregon area where we could meet in person with others that have the same symptoms and with the help of each other be stronger in dealing with our issues on a day to day basis.  Unfortunately I can’t afford to travel and I’ve not had a lot of luck finding a place to meet that would be convenient for everyone as so many of us can’t drive or if we can we can’t afford the gas to get there.

So in about March of 2009 I was introduced to Second Life.  It is a Virtual World and many think it is just a game.  But since being there I have seen it as a wonderful opportunity to have a Support Group that is Free, involves no travel expenses, no hotel rooms, no language barriers, and no time barriers.