7 replies to this topic

[Thelma]

I was diagnosed with narcolepsy in 2004 after the birth of my first child. Since then my husband and I have had two more children. I have been med free for about 7 years due to pregnancy and finances. In spite of my daily struggles to stay awake, I have always worked, even while pregnant as a high school English teacher or school librarian. I have also managed to complete a Master's degree in elementary education and a specialist degree in school leadership and administration. All of my job goals have been an attempt to improve the quality of life for my family. I am also the bread winner. My husband only had a high school degree until recently when I convinced him to go back to do a trade program in HVAC. In fact, I paid all of the bills for 3 or 4 years while he was in school or unemployed. 4 years ago I had the opportunity to take a job as a school librarian in a very good school district about 30 miles from where we lived and I currently worked as A high school English teacher. The small MS delta town that we lived in and I worked in had very low performing schools, so I was thrilled to get this job so that my children could attend a good school. I was already making arrangements to take them to a private school in this town that was 30 miles away. I had hoped that my husband would be willing to move just 30 miles from his hometown so that it would be easier for me and the kids. Well, unfortunately I have spent the last 3 years driving back and forth. I came so close to having a wreck so many times to and from work with my 3 precious children in the car. I begged my husband to sell or rent the house so we could get something close to my job and the kids' schools, but he would not. In March, I decided to rent an apartment for the kids and I to stay at during the week. I consulted him about it and explained that I could not continue to endanger their lives. He acted as if he was ok with it. I told him we would stay at the house out in the country on weekends. Well, at first he would come to the apartment to stay with us through the week, but lately he doesn't come and acts angry. I am basically working all day and taking care of 3 small children by myself. I am frustrated and hurt. I feel like he is not thinkIng about us at all. Not only is he acting angry towards me, he is hurting the kids by not being around and I feel like they blame me for not going to the other house. Also, we are committing financial suicide. We can not afford to maintain two homes on a teacher salary and maintaince worker salary. I am barely making it check to check! I am so stressed. What should I do? I feel like this marriage is ending all bc of my Narcolepsy. My son even said tonight that he wished I didn't have Narcolepsy. Any advice?

[Megssosleepy]

It sounds like you have fought and worked very hard to be where you are today, I am so sorry that your partner (after supporting him) can not support you in return. I wish I had some good advise for you. You sound like a very strong and smart women. You know your children need a better school to succeed, and you have worked so hard to be where you are today. You can not put yourself and your children in danger by driving so far!
I wish I had some advise for you. Maybe your husband is upset/angry because he realizes he is loosing you? Have you been able to have a good long discussion with him? Is he okay with the marriage coming to an end if he doesn't compromise? What are his reasons for not moving?
If this was just about a job that would be one thing, but this is about your children's safety and their right to succeed in life.

I am wishing you the best. Don't give up! Don't give in for the sake of your children either.

[LauraL]

Oh, Thelma, my heart goes out to you! First of all, congratulations for everything you've accomplished despite having to live with a serious illness. A master's degree and moving up in your chosen field are huge accomplishments for anyone--narcolepsy or not! And then to take care of a family on top of this? You must be superhuman!

I've never been married, so I'm not sure how valuable my perspective is, but personally, I don't think narcolepsy is to blame for this one. Everyone has limitations--we just do--nobody can do everything or be everything, no matter how hard we may want to or may try. Your limitations (and mine) include some related to narcolepsy, and while it can certainly be frustrating, you've obviously found ways to be successful despite that. We hope that our loved ones would be understanding of our limitations, and help us work around them, but that's not always the case.

The fact that your husband initially did not oppose your renting the apartment in town, but has stopped coming and is getting upset about it suggests he may not have been upfront about his feelings initially. Your request for him to move with the family for your new job, especially when you're the primary breadwinner, seems more than reasonable. I know you say money is tight, and counseling can be expensive, but I know when I was a teacher here in California, all teachers were eligible for what was called the Employee Assistance Program, which included something like three free counseling sessions with a professional psychologist or marriage and family therapist. Is there something similar there? Also, many insurance plans will cover a set number of therapy visits per year, even if you don't have a medical reason. Most carriers contract with a mental health network, so you may need to call your insurance company or poke around their website to see how they handle that.

I'm a big fan of therapy--it was intimidating to me at first, but it's so nice to be able to talk to someone with outside perspective, who's not so caught up emotionally in what's going on. It sort of felt like talking to a wise aunt, someone who could give me advice about life and people. Do you think your husband would be willing to go with you? If not, I think it's still a good idea to go yourself. My first therapist recommended a book to me that helped me so much to understand why I reacted the way I did with family members--why I felt hurt by their lack of support and how to take care of myself and set the boundaries I needed to. It helped me learn how to honor myself and my own needs, while still being there for my family--even if that meant that I couldn't do everything my family wanted me to do. The book was called "The Dance of Anger" by Harriet Lerner, and I've recommended it, and the author's other books, to many of my friends.

Best wishes navigating this situation! You're obviously bright and capable and have met lots of challenges, so I'm sure you're up to this one, too!

[Thelma]

Thanks to both of you for your encouraging words. I really don't know what to do. I am so worn out and feel like I have given so much support to my husband while he acts as if it N is just no big deal. I wish he could walk in my shoes for a few weeks. It is do hard to explain in words how you feel--sleepless nights, nightmares, struggling to stay awake while working and taking care of kids. I guess I am mostly worried about how this will impact my children. They love their father and he loves them (although his actions seem to prove differently). But he is not going to take them to school, pick hem up, take them to Bball practice, do homework with them, cook them dinner, bathe them, and put them to bed every night. He just doesn't do these kind of things. They think he is so fun because when he is with them, they just play ( and it is usually just on a Saturday for a few hours). When he does come to the apartment, he comes in really late like 10:00 when kids are asleep. If I am the one taking care of all their needs, I have to take care of my N to the best of my ability so as not to put them in danger.

Also, I never mention divorce because I am afraid he woul use the fact that I have N against me to get the kids, even though I take care of them almost completely by myself. If he got them, he would not take care of them the way that I would want them to be taken care of. They would be shuffled around his sisters and Mother's houses. They would little or no structure. I feel so trapped and sad that my life has turned out like this. I really wish I could be enjoying my children as they grow up rather than feeling so stressed.

[gina123]

Thanks to both of you for your encouraging words. I really don't know what to do. I am so worn out and feel like I have given so much support to my husband while he acts as if it N is just no big deal. I wish he could walk in my shoes for a few weeks. It is do hard to explain in words how you feel--sleepless nights, nightmares, struggling to stay awake while working and taking care of kids. I guess I am mostly worried about how this will impact my children. They love their father and he loves them (although his actions seem to prove differently). But he is not going to take them to school, pick hem up, take them to Bball practice, do homework with them, cook them dinner, bathe them, and put them to bed every night. He just doesn't do these kind of things. They think he is so fun because when he is with them, they just play ( and it is usually just on a Saturday for a few hours). When he does come to the apartment, he comes in really late like 10:00 when kids are asleep. If I am the one taking care of all their needs, I have to take care of my N to the best of my ability so as not to put them in danger.

Also, I never mention divorce because I am afraid he woul use the fact that I have N against me to get the kids, even though I take care of them almost completely by myself. If he got them, he would not take care of them the way that I would want them to be taken care of. They would be shuffled around his sisters and Mother's houses. They would little or no structure. I feel so trapped and sad that my life has turned out like this. I really wish I could be enjoying my children as they grow up rather than feeling so stressed.

Thelma, Your marriage is not ending because you have narcolepsy,,, your marriage is ending because you have a partner that is not a partner. It is easy to blame everything on narcolepsy, but in fact my dear you are an amazing human being that deserves better. I think your marraige would have ended with or without narcolepsy. Instead I see how narcolepsy has made you achieve beyond your wildest dreams!!! and perhaps saved you from a destructive marriage. I only wish you and your kids the best, but sometimes we think people are supporting us, but in fact are weighing more heavily on our life!

[Enginerd]

I wholeheartedly agree with gina123. It sounds like you don't have a partner who supports you and furthermore, it sounds like he doesn't understand what it's like to be you and suffer with narcolepsy on a daily basis. You and your children deserve better (more consideration), but it's certainly not my place to comment/give advice. I just hope things work out for the best, whether it's your husband realizing how unreasonable he is being, or you two having to part ways for however long.

I did have a question. You said you haven't been on medication for 7 years and that was partly due to finances. If you're willing to put out the money to rent an apartment, why not spend the money on helping yourself? It would make it a lot easier for you to function on a daily basis, and definitely be safer for both you and your children.

I also wanted to add that I know how rough this can be. Initially, I attended my local public school, but when my parents (and even I) realized how terrible the system was at the middle school and high school level, they transferred me to private school. Unfortunately, the closest private school was about 22 miles away. We did have bus service to and from, but it was more than an hour ride each way (I was one of the last stops), didn't enable me to do after-school activities if I had to take the bus, and I often had trouble waking up early in the mornings to catch the bus at 6:45am. So my Mom drove me a lot and eventually, I drove myself. I didn't realize I was developing narcolepsy at the time (that would explain my fatigue), but it was brutal to commute that much!!! I will say that attending private school gave me a lot of great opportunities that I probably wouldn't have had in the huge public school system. It also taught me a rigorous work ethic and set me up to attend one of the best private colleges for my major in the country. So it was definitely worth it.

Edit: As long as you have your own health insurance, you should look into Teva's drug program for Nuvigil. I can dig up the link for you if you're interested, but I believe they help cover prescription drug costs for qualifying individuals. I'm not sure if you'd qualify (since they would consider your tax returns as proof of financial need, or lack thereof), but you could certainly try petitioning them as a special case.

[purpley]

Any advice?

I really hate to say this, because I want to express my support for you, so please don't take it the wrong way. You should delete your posts here on this subject, and ideally have the moderator delete this whole thread, unless you've changed enough details that the description of you and your life isn't recognizable. If you do decide to divorce your husband, I guarantee that his attorney will look for everything you've ever posted publicly on the internet about your narcolepsy, your kids, or your marriage, and if this thread comes up, he'll show it to a judge to "prove" you've been putting your kids in danger by driving with them, even though you're doing everything right. If you get automatic email notifications of your posts, make sure you delete the ones related to this, too. Go back through your old posts, as well.

The best thing you can do in terms of protecting yourself in case your husband fights you on custody -- and it sounds like he's just the kind of guy who would do that just out of spite, even if he didn't want custody -- is to get rid of your whole online presence. But, since that's impossible for most of us, at the very least, take a moment to change the password to your email NOW with something he can't possibly guess or crack easily, unless you think he'll notice; if you can't do that, then go back and delete anything remotely related to this. Get yourself a second email account (like a free gmail account) that your husband doesn't know about, and use that one for any conversations about your marriage or narcolepsy. Use that email for registering for forums like this one. (Make sure you delete any confirmation emails about the creation of the second account from your primary account.) Make sure that your passwords for Facebook, Twitter, or anything similar are also ones he doesn't know -- and if you're not sure, change them anyway. Don't post anything on Facebook that you wouldn't want him or his lawyer to see, because no matter how high your privacy settings are, one of your friends will have settings that are so weak that it could become visible; talk with friends about this stuff by private messages only.

I know, I know, this seems paranoid, and you don't even know what you want to do yet. But you need to leave your options open, and the best way is to start cleaning up your internet presence now, "just in case." Please, take care of yourself.

[Thelma]

Again, good advice from everyone--especially concerning the importance of keeping all of this confidential. Luckily, my husband doesn't know the password to his own email ( which I created for him, but he never uses). He has no understanding of the Internet. However, I may still delete this. I just needed somewhere to vent before I exploded. I have recently been taking provigil. I have insurance now. I mostly didn't take meds bc of having 3 children. Even with the provigil, driving is so difficult.