So it’s been awhile since I shared, exactly three months actually! I really should write more often, sorry! My relationship is still getting better with the ninja and even more lately since he started Xyrem with his Vyvanse. I’ve noticed that he is much more animated which is something that we both have not seen out of him in awhile. Last week I asked him to remember to do something tomorrow evening and usually I would have to remind him a 100 times but not this time, I asked him the one time and he remembered the next evening, heck I had even forgot that I had asked him the night before! I better watch out once he’s on his normal effective dose! Another thing that blew me away was on Saturday he said to me I love you, he hasn’t said that in a very long time, I was shocked to hear it from him. We still fight occasionally but not like he use to. I try not to fight with him because it doesn’t get us anywhere and he usually has a cataplexy attack from it. He’s slowly coming out of his shell and I’m excited for what the future holds!
I also wanted to share two things tonight, first is a patient-focused narcolepsy survey, this is an awesome opportunity for PWNs around the world and their loved ones to share their unique experiences with narcolepsy with the FDA! So please take 15-20 minutes to help educate FDA about what narcolepsy REALLY is! Survery: https://www.surveymonkey.com/s/unitenarcolepsy
And the final thing that I would like to share is a cool Facebook group that the ninja and I have joined. It’s called People With Narcolepsy Pen Pals. The group was made for people who have Narcolepsy, but also welcomes loved ones of people who suffer from Narcolepsy. You have the opportunity to pen pal with people all over the world, PWN can pen-pal with each other or pen-pal with a non-PWN to help educate them. Also spouses/partners of PWN can pen-pal with each other. I wrote my first letter to a fellow spouse this past weekend and am excited to converse with her. I also messaged with another spouse in another county and I could really relate to what she was saying, it made me feel like I wasn’t alone. The ninja is also going to be writing with some fellow PWNs and I think it will be great for him as well to talk to some who is going through the same thing. Check it out!
It’s the ninja’s wife. Things have been so much better between us. The Vyvanse he is on is really helping him, he is like a new man in many ways. May 5 was our sixth wedding anniversary and we had a great time being together, we went out of town for the night and also went to a concert on another night. I got to see just how well his medication is helping him, he forgot to take it (for the first time too) on the morning of the day before our anniversary and he kept falling asleep the whole day and was zoning out more than he had in a long time. We didn’t realize until the next morning when we returned home from out of town that he had forgotten to take it. It makes me happy to share that our relationship is the strongest it has been in a long time.
The ninja is still struggling with the motivation to do things like write on this blog and his popular humor blog The Dingleberry. He used to blog on that blog several times a week and now it’s down to once a week if we’re lucky. This blog, he said he also wants to get into more. So I’m hoping that he soon finds the energy to carry that out. He has his next follow up appointment at the beginning of June, I will be curious to see if they up the dosage again or leave him where he is since he is doing much better.
This is ninja’s wife, I guess it’s my turn. I haven’t written here in several months since I had weight loss surgery in January and have been preoccupied with the recovery and such. Things are about the same between us, some days are better than others. Communication is still a really big problem, we just started with a marriage counselor this week and we think we are going to like her, we tried marriage counseling last fall and it went pretty well, we stopped going because the counselor said we were doing better, this was right before the ninja’s diagnosis at the end of October. She started to see him on his own and this past February had me start coming back since things aren’t going well here. But the two times we went together she won’t work with us as a couple and then she said the comment that upset him so that made our minds up, neither of us were returning to her. The ninja will be starting with his own new counselor on Monday. So I am hoping a combination of a new marriage counselor and a new individual counselor for him will help us both. I don’t want a divorce, I’m not really into that, but at the same time I don’t like living in an environment where my spouse no longer speaks with me. He tells me he still loves me but hasn’t shown it in a long time, I’m lucky to get a conversation anymore. I hope counseling can help us fix and fill the big hole.
The Vyvanse medication seems to help a little, at least more than the Provigil did. I hope that they find a dosage that works the best for him. When he went to his appointment a few weeks ago he went with a list of concerns and for some odd reason he didn’t see his normal person and they didn’t even go over the concerns with him, so when he goes again in a few weeks the list will go with him.
2013 is the year of re-making me, I hope that ninja will be able to remake himself this year also. Each day that passes it seems like we grow apart a little more. We just don’t talk or do anything, he says he doesn’t know what to say to me, it hurts me because it hasn’t always been like this. We’ve been together over 9 years and only the past year after his bad car accident in January 2012 did we start to go apart. Like I’ve said before, I know he’s in there somewhere, I just hope he comes out soon.
We just wanted to share that the book “Wide Awake and Dreaming: A Memoir of Narcolepsy” by Julie Flygare for the Kindle, is available, TODAY January 1 only, for free on Amazon. You can read it for free on your computer, kindle, smartphone or tablet using a free kindle app. You can get it here: http://www.amazon.com/Wide-Awake-Dreaming-Narcolepsy-ebook/dp/B00AOBIPFC/ref=tmm_kin_title_0
I just downloading it for the ninja and I to read. There aren’t too make books out there about narcolepsy we are finding. Julie Flygare is a big advocate and we can’t wait to read her book.
Get it today and today only, it’s sure to be informative for those with narcolepsy and though living with a person with narcolepsy!
It’s getting harder around here for both of us. He doesn’t seem to be getting any relief yet and the doctor doesn’t want to try another medication until he has had his neuro-psych evaluation which is still a month away. It’s hard for me because I feel like I have completely lost my husband, he rarely communicates with me anymore. He tells me he doesn’t know what to talk to me about. That upsets and angers me because I don’t understand how you can be with someone for 9 years and not have anything to talk about. Our arguments have increased ten fold since the diagnosis. We are both are under a lot of stress right now. He is suffering and I am get ready to undergo surgery in four weeks. I am trying to focus on myself and try to help him at the same time. But I get angry when I try to help him because it doesn’t seem like he is trying to help himself any. The arguments happen and then I just drop it. Why fight with him, the arguments is one sided, he just listens and says nothing back. I also drop it because it isn’t helping the matter I’m sure. I’m trying to understand what he’s going through but I can’t. You can never understand what another person is going through. Something I say on my personal blog is never judge the path of another especially if you haven’t walked it. I don’t want to be upset with him. It’s just becoming too much for me right now. I feel like I have a roommate, I’m afraid he doesn’t love me anymore. He says he does but never shows it. I just get upset and angry because I feel like I have lost my husband and that I may not ever get him back. I’m hoping that we can find him the right help and that maybe the person I feel in love with will come back, but for now I must try to love the person in front of me even if he appears to be different because deep down inside I know that my husband is still in there. ~The Ninja’s Wife
Guess it’s my time to write, the ninja seems to be doing better on his Provigil verses when he was not on anything. They increased it to 200 mg last week and he has been doing pretty well, at least in my eyes. I am noticing him being more alert and having less sleep attacks, he has probably only fallen asleep once on a car ride (while I am driving) in the past few weeks, usually that was an every time occurrence. He has also seems to be more attentive to me, that has been something he have been struggling with in our relationship. Sending time with each other was being nonexistent. By the time he gets home from work there isn’t much time to spend together, honestly that wasn’t the problem, it was on his days off. He seemed to be more alert after coming home from a 12 hour shift verses his days off. On his days off he would sleep while I was at work, which is understandable. Once I was home he would stay awake but would just seem to zone out and act like I wasn’t even home with him. He would go hours without talking to me. He would just play on his phone or his computer. Many times he wouldn’t even realize that I was talking to him. I felt like a fly on wall. Last weekend I sort of reached the end of my rope with it, he worked last weekend so we mainly had this huge fight over the phone or text message. We have been having marriage issues long before the issues, mainly with this sort of thing going on. We went to marriage counseling for a bit and it seemed to help. The counselor thought we could stop actually. The counselor continued on with him without me and he still goes twice a month. I see my own counselor who I have been seeing for a few years. But once we stopped going together it seemed that everything we worked on went back down the drain. We might have to go back and pay her a visit, anyway I digress, after the fight, I sadly (and regrettable) gave him an ultimatum, things need to change or I’m out of here. Aside from this we also don’t have much of a intimate relationship. The narcolepsy has caused issues with certain things and now it’s been so long that we both don’t really seemed to care anymore. I am sharing this personal note of information because I believe it’s important while living with a spouse with narcolepsy. But that’s not what makes a marriage, it’s just a small part in our opinion. Anyway, since this fight, he has been trying to talk to me and we try to do things together more. I hope it continues and that we can get this relationship back on the mend. ~The Ninja’s Wife
The ninja has been on his Provigil now for a week. As he stated in his last post he is not feeling any different. On the plus side he is not having any side effects. He had a headache the first two days but they never returned after that. We are hoping that on next Friday when we call his sleep doctor to check in that they might increase the dose for him. I can tell he is frustrated and I am too, I am truly sick of watching him suffer. But we talked last night and both agreed that better times would be ahead and that we just need to get through this. Our relationship is going about the same, we had a huge fight at the end of last week but this week has been good. The fight seemed to have gotten a lot out of both of us, because things have been fairly peaceful since.
I am afraid in my last post that maybe I came across as saying that I feel like I have to take care of him, it may have sounded that way, but that was not my intention. I only met to say that I feel like I have to handle more things that might normally be shared between two people in a marriage. I never want him or other people with narcolepsy to feel that I think the spouse has to take care of him. Sorry if that my thoughts came across that way and I offended anyone, that truly was not my intention.
The ninja’s 31st birthday is in a month, he got an early birthday gift yesterday, I learned from reading some posts in a narcolepsy support group about an alarm clock that incorporates a “wake up light.” I did some more research and decided to get him one as an early gift. It gradually increases the light in the room in the 45 minutes prior to the alarm sounding. He had to work today so he gave it a try. He set the sound on the alarm to go off at 6:15 and then at 5:45 the light gradually started to increase then at the alarm time the sound would go off. He actually woke up before the sound ever alarmed! He was quite surprised. He said he liked how it woke up him up slowly and not instantly with a blaring alarm. We’ll have to see how tomorrow morning goes for him. He works 12 hours shifts which makes for a long day, but then in turn only has to work 3 days a week. He has been work this schedule since June and actually seems to do better with this that 5 days of 8 hours shifts.
On the wife side of things, I really wish my sleep patterns where not one the completely opposite end of the spectrum, I actually have pretty severe insomnia. I have been managing it without prescription sleep aids the past several months, it is hard, but I spent so many years on sleeping pills that I don’t want to do that anymore. He went to bed over 45 minutes ago and I could not sleep at all so I had to get back up. He quickly feel asleep and I am not sure if he even knows that I am not in there, I am getting ready to head back in there soon. For once, I would like the ninja and I to be able to fall asleep at least somewhere close to each other, he is out in about minute and a half. I honestly can lay there for hours before falling asleep. ~The Ninja’s Wife
The ninja finally was able to get his prescription filled Thursday morning and started on it. He said he got a headache this afternoon and had to lay down for a bit but other than that he said he wasn’t having any other side effects at the moment. He is to call the doctor in three weeks to check in. He doesn’t have an actual appointment until the end of January and is waiting a call to schedule a neuro-psych evaluation to see if his attention deficit disorder is a result of the narcolepsy or is a separate issue. The ninja and I got in a bit of a fight this afternoon. I think these past two weeks since the official diagnosis have just been too much for me. I feel this heavy guilt for getting angry at him in the past for “behaviors” that were just a result of his condition. The memory issues, the inability to properly say what he needs to when he needs to…I kept tell him it was because he wasn’t trying hard enough (at what? I never said and I don’t know actually.) The more I am slowly learning about narcolepsy the more I try to understand and be more compassionate. But today I just lost all compassion and got angry again. I got angry because our marriage feels like it’s just a roommate situation many times. A lot times there is no affection between us, he’s too tired or says he doesn’t know how. Though he did long ago. He says he loves me, I try to believe it, and we made up. But I can’t help but feel that I will get angry again even though I know need to be more compassionate, it’s hard feeling like you are the only one who cares. ~The Ninja’s Wife
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
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