Narcolepsy Support Group

A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.

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kishy 06/08/2015

I was just recently diagnosed with narcolepsy (May 20, 2015). My initial feelings - truly! - were relief! I thought now SO MUCH makes sense. No, I'm really not trying unconsciously to sabatoge my career. No, I'm not making up this uncontrollable weird sleep thing that happens some times. And after even more thought - I now understand how it was possible that I fell so hard I blew out my ACL - TWICE! I could never figure out how it was possible that I could just step and discover that suddenly my leg couldn't hold me and I'd collapse to the ground. I truly felt such relief. No one wants a diagnosis - no one WANTS to have any medical issues to complicate stuff, but at least I now understand.

My husband, though, does not. He is pretty sure that I am just making all of this up as a way to be lazy and do "even less" than I do now. He has this image in his head of us in our sixties hiking all over Europe and he's not so sure that his image of how he wanted his life to be fits in with a wife who takes naps a lot. Or doesn't have the energy to go on a four mile walk right now.

I understand it. If I suddenly discovered that a lot of the things I liked doing with him (or having him take care of) were no longer possible, I'd be upset too. Not at him - but just in general. So while I understand, I also am kind of bitter about his response. Like - this isn't about YOU, dear spouse. It's about me. It's ME who is going to have to figure out how to do this. It's not about how YOU feel about my situation... :(

I'm just venting, I guess. Has anyone else felt like this?

pc1011234 06/09/2015

Hi kishy,

I just joined this support group about ten minutes ago and your post was the first I read; despite not being quite in the same position you are, I could definitely identify with your thoughts regarding getting diagnosed. My first emotion, was, like yours, relief. Relief that my fatigue and excessive sleepiness wasn't "all in my head," and that I wasn't "lazy" or "undisciplined" as some have accused me of being in the past.

Unfortunately, I don't really have any particular advice I can give you regarding your husband's response. I can assure you however, that I am very much currently feeling as you are with regards to the whole "It's not about how YOU feel about my situation" schtick. Feel free to vent, as you're in the good company of individuals who are currently experiencing or have experienced what you're going through right now.

Best wishes,

PC

IamMissingMyself 06/16/2015

My husband has been very supportive but he knows that the tired and napping "me" was not normal. It also helps that he screwed up our marriage and I think the stress contributed to my Narcolepsy getting worse. I think that once you're feeling better and your energy improves things will fall in place.

jansarah 06/25/2015

Totally understand! My husband and I have been married for almost 13 years. Though, he is oftentimes supportive of me getting a little mid-day nap, a lot of our arguments stem from him not thinking I "pull my weight" in the household. It doesn't help that he has an abnormally high amount of energy to begin with. He forgets that I'm running on fumes, so to speak, sometimes. Just keep doing the best you can do!

kishy 06/30/2015

Thanks for responding, friends. It helps to know others have felt this too. It doesn't seem to be getting better, and if anything it's getting worse. The latest is that he actually isn't sure this is a real thing, and if it is, I should "power through it". Like this is some sort of willpower thing and if I was motivated enough it wouldn't be a big deal. Sigh.

I'm hoping maybe this is just his freak-out moment of coming to terms with it.

IamMissingMyself 07/13/2015

I had to force myself out of bed each day to go to work. Beyond that I didn't care to do anything. I truly didn't want to continue living. It was barely an existence. And no one understood. My husband had to do more since I couldn't do much any longer! If he had any doubts of my condition he never expressed them!
I hope your husband starts to show a better understanding soon!

alabama35 07/19/2015

Narcolepsy is hard on both partners. Sometimes I feel so badly that my spouse has to put up with my narcolepsy. I have been off my meds for a couple of years so we could have a child and the narcolepsy is coming back so strongly now I am going back on meds soon. I am sorry that your spouse is in such denial about your condition. It really is awful to be tired all the time!

melmin 08/14/2015

Would your husband be willing to meet with your doctor to help explain what narcolepsy is and what you're experiencing. And/or find books or online material and leave around the house or ask him to read it. I don't know if those are even ideas you would consider or he'd do. I did research and would just throw in a fact or two here and there with my friends and family. I think it's important for those close to us to be educated on what it is and what we're experiencing and why. I also had a strange "relief" when diagnosed for the same reasons. I still come across those who think it's in my head or that don't understand its not the same as "staying up a couple of hours late last night" sleepiness. I'm not married but my last relationship ended because my narcolepsy would worry him too much. Yes, that is what he told me. Just like you my reaction was I'm the one who has to deal with this 24/7. I don't need someone to stress and worry about me. I need someone to accept and support me. I'm hoping things will get better between you and your husband soon!

beverlyboydmcneal 11/12/2015

My family didn't get it until I asked them to spend sometime reading the comments in a narcolepsy chat group. Other people talking about what I was trying to articulate really helped. I wish you well (and some luck).

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