The ninja and I have been looking online for good support pages and support groups for either of us. So far we haven’t found anything good online and have yet to find anything that is in person around us. The closet support group I found was two hours away. I had found one page on Facebook, but some one on there who didn’t have narcolepsy or cared for someone with narcolepsy was on there asking if it was bad to want to marry someone with narcolepsy. She stated that she felt she would admire them more. I actually responded by saying that have been with my husband, the ninja, for 9 years. I love him to death but that it is very hard. I won’t trade him for the world. But at the same time narcolepsy is stressful for me because I have to handle a lot, like money, important matters, and 99% of the driving just to name a few. She responded by saying she understood the responsibly of caring for someone with narcolepsy and had no problem taking them on. This whole statement perplexed both the ninja and I, I actually got quite upset and said back “I can’t understand the idea of going out and finding someone with a certain illness. I also don’t believe you could understand all the responsibilities, you look very young in your picture. It’s not just the few things I listed. There are so many things. Having a partner with any condition is difficult and when they are so tired or disinterested because they are so exhausted it can affect the relationship negatively to the point where you can become more of a parent than a spouse. Divorce can happen. And god forbid anything ever go wrong in the spouse’s life, which it did at one point for me, it made it even harder to care for myself and him at the same time.”
Really, you can understand that? I don’t think so. I love my husband not his condition. Do you really understand being terrified every time your spouse gets behind the wheel even when they have the doctor’s permission to drive? Do you understand sometimes not having all the love you give to your spouse/partner not returned to you because they can barely function? There have been many times especially in the last year that I felt more like a parent to my husband than his wife. I love him like my husband, but I have had to take on all the adult responsibilities that normally two people would share. You really understand that, I don’t think so.
I know I risk sounding like a b**** or that I don’t love my husband. But it is very hard to be the spouse of any person with any condition. Never tell someone that you understand what they are going through. Until you have walked in my shoes or the ninja’s shoes you can’t say you truly understand. ~The Ninja’s Wife
Wednesday I dropped off my prescription for Provigil at CVS. They told me that my prescription required prior authorization, so it is Monday and I apparently have not gotten any closer to getting my medication filled. This is just another setback in my quest for help. I have been trying to get answers from mental health professionals for years and have been given incorrect diagnoses from anxiety and depression to Aspergers syndrome and ADD. I had seen at least 4 different doctors before being tested for narcolepsy after I had complained about being extremely tired all the time to everyone that I had previously seen. Even when diagnosed with ADD my psychiatrist was unwilling to prescribe me stimulants likes Ritalin or Adderall which may have helped with most of my symptoms, since narcolepsy causes many symptoms shared with ADD many people are incorrectly diagnosed. After seeing a neurologist in May I wasn’t able to get a sleep study scheduled until July, when the results came back abnormal I had to get another sleep study done with MLST which had to be scheduled for September! I went back to my neurologist for a follow-up appointment a week later, but then he just referred me to the sleep doctor who I couldn’t see until last week which was about a month and half after my last appointment. This whole process has been very frustrating, and it is even more difficult when there are setbacks like medications needing prior authorization, and tests not getting scheduled. I have been trying to stay optimistic about things, but all of the delays are getting me aggravated. It is even more difficult when you have trouble concentrating and remembering what to say when calling the doctors offices and dealing with insurance. Unfortunately, my wife has had to handle many of my phone calls which is an unfair burden for her to deal with.
This is The Narcoleptic Ninja’s wife, last Wednesday my husband was diagnosed with Narcolepsy. This is something we knew would be a possibility for awhile but the type of thing you always hoped wasn’t true. I have been with the ninja for almost 9 years and married for over 5. It has not been an easy relationship the past year. He seemed like him was even more exhausted that ever before. Last January my worst nightmare came true, he was in a car accident, luckily it was just an accident with himself and no one included him was injured. He had fallen asleep at the wheel on the way to his job which at the time was 45 minutes away. This car was totaled. This was when I realized that he needed to be tested for a variety of things. It took him until April to finally agree to see a professional. Since April he has undergone testing for brain conditions, attention deficit disorder, and narcolepsy. I was pretty upset by how long this was taking. He was never able to get appointments that were not a month out. To me when something as serious as narcolepsy is a possibly you would think that they would move a little faster so the cut down the risk of another accident.
The last few years of our relationship have been the hardest, he was secretly struggling inside and I was going through my own issues of severe depression. I am surprised that we survived some days. Now that my depression has been gone for the past 1 1/2 years I really noticed that the ninja’s behavior was very different. He has seemed so distance in our marriage and he seemed like he didn’t care about me. He never helps handles our bills or anything that requires concentration. He would help with housework but only after being asked 15 times. I would get so angry at him for this. I just didn’t understand what was wrong and I still don’t. I hope that as he gets on his Provigil (stupid prior authorization!) medication things might be more manageable but for now it’s an every day struggle for both of us ~The Ninja’s Wife
Yesterday, I went to my neurologist to go over my sleep study results. I had a MLST test done last month, which is a multi-latency sleep test. Basically, they hook a bunch of electrodes to your face and head and monitor you while you are sleeping, then they wake you up after 8 hours of sleep, and the next day they have you lay down again every 2 hours for 20 minutes and measure how long it takes you to fall asleep and how deep of a sleep you fall into. The average person takes about 10 to 30 minutes to fall asleep (with a crap load of electrodes glued to their head), I fell asleep within 1 minute and 30 seconds of laying down, and during my naps the next day I fell asleep an average of 2 and a half minutes of laying down. I also have mild cataplexy. Along with other symptoms, they determined that I have narcolepsy which I kind of already had a feeling about since I am always tired and have fallen asleep easily for several years. I will be starting on Provigil after I get pre-approval from the insurance company so that I can actually afford the medication.
A little back story: I began getting tested for ADD and other possible neurological conditions after I was in a car accident in January. I fell asleep driving to work after I had gotten a full night’s sleep the night before. I basically fell asleep at the wheel, hit a couple mail boxes, flew over a ditch and and totaled my Chevy Cavalier in somebody’s front yard. This got me thinking that something could possibly be wrong.
I have been having problems with not having any energy, being tired all the time, along with poor concentration and memory for several years. I was never quite sure what was wrong since I am still fairly young and have nowhere near the energy that most people my age have. I have constantly felt like I was lazy or inferior to other people due to my lack of energy and ability to focus. There have been countless times where I was planning on cleaning the house or getting important things done but lacked the energy to do so and ended up sleeping all morning instead, as well as times when I have forgotten to do important tasks due to memory impairments from being constantly tired all the time.
In the future I will write more about my struggles with narcolepsy and my wife will occasionally blog about her experiences living with someone with narcolepsy.