Some Times I Feel Alone In A Crowded Room

First I have to say that I often need to remind myself that I am lucky compared to what I could have with narcolepsy. My symptoms on the relative scale are on the more moderate side so they were just mild enough that it took 6 years after I went to the doctor because something was wrong before I received a correct diagnoses and just sever enough that in that time they silently racked havoc on my life.
8 years ago when I first went to the doctor (I probably made 4 trips in 2 months) I was so tiered that all I could do was cry. My mom suggested that I might be depressed and when I mentioned that to the doctor she immediately decided that was what it was and put me on antidepressants. For the next 5 years every time I went in telling them that it wasn't working, that I didn't feel sad just tired, that I was having sever side effects, that I felt like my dosage was too high; My dosage would be upped. Finally I stopped going in because all they would do was check my thyroid and up the dosage. Finally about 2 years ago work became more demanding and it became impossible to hide my symptoms from them any longer I knew I had to do something else. By then I was barely able to make it to work and had energy for nothing else and to add insult to injury I would have vivid hypnagogic hallucinations where I called in sick and would end up fully convinced that I had already called and would be mortified when I got angry calls an hour later asking where I was. I found that my work place has a lot of accommodation for people with a diagnosed condition but when you can't tell them what on earth is wrong with you things get a lot harder. I would cry in the shower every morning because I was so tiered and remember wondering what kind of life I could have if this was it. Looking back I don't know how I manage to graduate collage, I don't remember most of it, or hold on to my job but I manage just barely.
What finally happened is my dad had a sleep study and was diagnosed with sleep apnea I thought maybe that was what is was and I ask my doctor to do a sleep study on me. Of course what they saw the first time was that I was on antidepressants and had a totally whacked up sleep pattern. I slept for 5 hours and only had 20 minutes of REM at the very end and weird pseudo spindles. I asked to go off the antidepressants and repeat the study with a MSLT. So I went through 2 months of step down and still had bad withdrawals and went back for my second study at the beginning of December.
2 months later my doctor finally told me that I had narcolepsy. I am lucky in that the medication has work well for me after about 6 months of tuning and almost immediately I feel about 50 time better after I started treatment. However, I don't think that any one I know truly understand what I deal with every day. I don't any one even had really made an effort to understand.
A few months ago I had to go off and on the medication to have surgery and I was staying at my parents house to recover because I wan't allowed to be alone. I can't tell you how many times I had to explain that no I couldn't take the narcolepsy medication right now to make this easier because it is serious stuff and there is a reason I was told not to take it right now. When I was able to get back on it I always find it difficult to re-adjust to because no matter how well it works it will never replicate what someone without narcolepsy will have. I think that I do well enough on it that they don't realize that while it's great and I am grateful that it works as well as it does it is a forced wakefulness and this comes with some baggage and getting use too. It is and I am guessing a constant battle to balance medications and they are never perfect. I think that everyone thinks that the medication I take somehow cures me.
The even more difficult part to explain is the caterplexy. Again my caterplexy is mild enough that it is often imperceptible to most people but sever enough to cause me a lot of problems, pain, and embarrassment. When I have a caterplexy attack I tend to retain partial control which can deceive people into thinking that I have more control than I do. An example of this is I might be out with friends and I start to have trouble standing. They try to "walk" me to the car by putting my arm over their shoulder. I can usually manage to sort of walk forward with them but my arm is being quite literally pulled out of it's socket by this and I can't control my mouth well enough to do anything more coherent than squeal in pain. It don't seem to matter how many different ways I try to explain once I have regained control that they are hurting me very badly when they do this and that I won't be able to tell them they are hurting me when it happens, every time the same thing happens and I am helpless to stop it. As a result I have been in physical therapy for reoccurring injuries for the better part of 2 years all as the result of ether my falling and hurting myself, repetitive gain and lose of muscle control that happens constantly making my muscles very tight and pain full, and my friend and relatives attempting to help me when I have attacks.
I feel like no one, including my family and closest friends, even attempt to understand and I don't want to be the person who talks about there problems all of the time. But there are somethings that they really need to understand so that they stop hurting me unintentionally. Even my ex-boy friend, when I would start to feel and attack coming on I would warn him and he would tell me to grab his hand. I would have to explain every single time that if I have an attack me holding on to his hand wouldn't help because I wouldn't be able to hold on and even if I could or he did It would pull my arm out of my socket.
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Sep 5, 2012