I don't expect anything from posting this. I don't even know what I am looking for by posting it. Perhaps I just want to say my thoughts, get opinions, or something else that I don’t know. This is going to be long.
I'm 21. I have narcolepsy (without cataplexy), Type 1 Diabetes, ADD, and moderate to severe anxiety and depression.
My story won’t begin with when I was diagnosed with narcolepsy. It will start with how my life started going downhill. And ending with me being at rock bottom.
I have been a type 1 diabetic since I was 9 years old (21 years now), and that alone to deal with is a headache. I've done well. My A1C (average blood sugar over a course of ~3 months) is 7.0. Doctors are impressed. I'm on the Omnipod Pump, which is great, discounting the harassing alarms it has. My blood sugars day to day are generally very good. But I have always felt sick day to day. I've tried everything, still always sick-ish day to day.
Starting from when I was in 9th grade, so I would be...14-15 years old, things got rougher. At first, I would feel exhausted all day during school and make it home to sleep from 4pm-8pm, and then again from 11pm or midnight to 630am. Then in 10th and 11th grade, I started sleeping through all my classes. I turned to caffeine to try and prevent me from sleeping, as I wanted to be successful. I was referred to as lazy, a slacker, etc, by everyone around me. I didn’t feel like I was. I literally was pushing myself as hard as I could. I got up to 2,000mg of caffeine a day and decided this was horrible as the caffeine effects would only last 20-30 minutes before I was tired again. I would drink several energy drinks a day, coffee, and what I couldn’t consume through drinks, I would then take caffeine pills. This was within a 1 month time span in 10th grade. I stopped “cold turkey” because I felt I was being ridiculous.
In 12th grade, I snapped from my ongoing fight with exhausting. I went to the doctor. I got diagnosed with ADD and was given Adderall and Vyvanse. I would take vyvanse in the morning, and adderall when it wore off so I could study in the afternoon. This worked for a while, up until after my first year of college. My grades in 12th grade greatly improved. I could finally stay awake in my classes. I have maintained the same dosage for 4ish years without an increase, which would be 20mg adderall IR a day, and 60mg of vyvanse a day. I graduated High School with a GPA of 3.5. I missed a total of ~300-400 classes from 9th grade to 12th grade due to being tired and unable to properly prepare for things. Staying awake and being focused was near impossible. I’d have a day out of the month when the moons aligned and magically I felt like I could study for hours. I took advantage of those moments, and studied as much as possible. I used diabetes as an excuse when I was behind.
Job wise, I've been successful. I worked at McDonalds from when I was 16-18. What a horrible job. Through a series of events, I got offered a job as an optician when I turned 18 through networking with people I know. People know I am smart. I am still an optician working for a doctor's office. In college, I am pursuing IT w/ Specialization in Internet Security. Optician work is a good job till I get my degree. It pays well.
A year after starting classes in college, I couldn’t deal with anxiety. It was bad. I didn’t go out any. I ended up with a Zoloft dosage of 150mg. I took this for a year, before I realized I was getting more cons than pros at this time. I took myself off of it.
Starting this last year and till now before my diagnosis with narcolepsy, things became unbearable. I could take 20mg of adderall and fall asleep an hour later unless I pushed myself hard to stay awake. I have taken breaks off adderall in the past during times I had nothing going on. My longest break away from it was 2-4 months. Recently, I have missed tons of classes at my university, and tons of days at work, due to sleeping through alarms and turning alarms off in my sleep.
Alarms don't work. I have several devices with alarms set on them. I have an alarm on my phone that makes me do three math problems to turn it of (e.g., 53 + 89 =?). With the math problem alarm, I can now do them in my sleep. I don't remember answering them, but I do. And I tried to make the math problems harder, but in my unconscious I will just pull out the battery of that alarm and then there goes any chance in other alarms set on that device to go off.
I finally got a sleep study done. I wanted to do it for a while, but I thought I was just feeling the same level of exhaustion that everyone else does. I delayed it quite a bit. The doctor said that I have narcolepsy without cataplexy, and my narcolepsy was misdiagnosed as ADD. It makes sense, as I never had a hard time focusing, just staying awake. In my 5 naps following the overnight study, I fell asleep constantly within 2 minutes, and being in REM at that time.
I am now on the highest dosage of Nuvigil, 250mg. The first day I took it, I felt the best I ever have. I am happy to know I got to experience what it might feel to be “normal.” Days later, it doesn't last the full day. I was encouraged by the doctor to now take half my old adderall dose in the afternoon to make it last the full day, which is 10mg. This works. But no matter what, the feeling of exhausting is with me. Nuvigil also helped with the social anxiety and depression that I have. I have now been on Nuvigil for a month.
Now, as the title says, I'm not far from my breaking point. With the feeling of exhaustion present everyday, knowing I will never feel rested from any amount of sleep, knowing that every day waking up will be like hell on earth, and when I am up I'm generally sick from diabetes... I don't want to live much longer.
I'm not going to hurt myself. I don't do that. I'm not depressed either. I'm more emotionless. But to be honest, I can fake a good uplifting spirit very well. But I can't take this torture that I am going through anymore. I look back to my childhood, and although I had some "*BEEP*ty" experiences then, I was the happiest kiddo you would ever see. I was eager to do things and I was happy. And as much as I try, emotions are very hard for me to feel. Most are faked so I can come across as "normal." I’m tired. Going back to the “I don’t want to live much longer” statement, I mean that I would be happy if things just stopped for me.
This semester alone, I’ve missed plenty of programming tests, classes, etc. I think I probably have around 12 absences in each of my classes now, and I only have them twice a week. But, again, my grades are sitting at all A’s or B’s. But I feel like a failure. When I miss a test, I email my professor and let him know that I am sorry I overslept and couldn’t get up. He knows I have narcolepsy, I told him. But I get a sense that everyone is frustrated by this. The doctor I work for now is probably on the verge of firing me. I would, in his / her position (being vague with his / her gender). I am unreliable. It takes a lot of motivation from me to convince myself I’m not a failure and it is out of my control. But I feel like I am full of excuses. I hate it.
I'm tired of pushing through this, knowing things won't get better. You may say there is a lot to live for. That is true, and I believe that. But I don't think it is worth it for me to endure this and try to get to the point where I can experience life's many beautiful things.There is no cure for narcolepsy or type one diabetes. It is something I will continually have to fight with.
“I believe in it, I answer for it, for the whole work of man really seems to consist in nothing but proving to himself every minute that he is a man and not a piano-key!”