Posted by apryl on June 30, 2008 at 23:44:02:In Reply to: Re: Feeling desperate posted by baobabble on June 30, 2008 at 17:47:34:
Having narcolepsy can make you feel isolated. Growing up and mainly during my teen years, my Mom always told me I was lazy. Let me tell you, that sticks with you. When I tell my husband I feel like he preceives my napping as being lazy, he tells me he by no means does he think I'm lazy. But, I never really believe him because I feel like I'm being a bum laying around. When I hear him come home, I promptly get out of bed and pretend I was doing something busy and list off the things I did that day so he won't portray me as lazy. I know intellectually that this is stupid to pretend, but the stigma that comes with narcolepsy (and what you hear growing up) sticks with me. My Cataplexy is worse that my narcolepsy symtoms. Those symptoms can obviously be seen (not being able to move) so I feel like I need to watch where I go and who I'm with because I haven't told many people my diagnosis. I'm lucky in the fact that I have been married to my husband for 13 years and been together with him for 21 years. He has watched my symptoms progress to where they are today and he is supportive, although many times I still feel like a failure and that I've cheated him out of a normal life.
I have a lot of anxiety and when not treated, I get irritated and/or get depressed too. I do not sleep well at night unless I use medication. I cannot take the usual meds for Cataplexy because they caused me to be confused. I cannot take stimmulants because they make me edgy. What I now treat is my anxiety, and in turn, it has helped my depression symptoms as well as somewhat control my Cataplexy. I take Buspar during the day (small dosage, only 15mg. a day), and Seroquel at night. The Seroquel makes you very sleepy so I sleep most of the night (although I do have strong dreams that seem to last all night), and it helps control some of my anxiety during the day. I also take Xanax in small doses when my anxiety gets stronger. I rarely drink alcohol, and when I do, I can feel how it makes me feel depressed in the morning. My sister used to smoke a lot of pot and she had major depression. When she finally stopped with the pot, her depression lessened dramatically.
I recently starting exercising regularly and although it was very hard at first because it seem like too much to get up and do it, it has given me more energy. I did't believe it would, but I had to try.
I know it's easy to isolate yourself. I do it too. I do try now (especially because I feel more under control because of my meds) to make myself go out and do more. I usually feel crappy during the process of getting up and actually leaving the house, but once I'm out and about, it usually makes me feel happier and more part of the world. I know this is easier said than done, but I am trying to do it. My life is not as "normal" as I would like it to be, but it's the hand I'm dealt. When my friend recently got breast cancer and went through that whole ordeal, I realized I could have it much worse.
I hope you get the right medications to control your symptoms. I know depression and anxiety run on a fine line. (By the way, all the different SSRI's I took for my anxiety/depression made my narcolespy 10 times worse!!!!) If you try to slowly get out and do stuff, even when you don't feel like it, you may find that you start to feel better about yourself. Maybe even having a small pet will boost your life. Although our lives are different than most "normal" people, we can make up our own definintion of a normal life for us. I wish you the best.