Posted by julieme on July 01, 2008 at 15:14:02:In Reply to: Feeling desperate posted by baobabble on June 30, 2008 at 11:00:40:
As someone who has had narcolepsy for the past 15+ years, I can sympathize with all of your complaints. Not a lot of people understand what a pain in the ass this disease is and the far-reaching implications of it in every facet of your life. Since you are a relatively new diagnosis (only a little more than a year), I encourage you to hang in there...it often takes years to tweak and modify meds and treatments so they are most effective for you. I would also encourage you to google something like "help with prescription coverage pharmaceutical company"...there are lots of programs designed to help people in your situation. Once you have your meds better controlled, your life will slowly start to improve. It will never be completely 'normal', but it can be pretty darn close.
One of the things that has helped me is to keep in mind that it could always be worse. Granted you have a very annoying disorder, but at least it is treatable and you have responded to treatment. Some people don't even respond to the meds that are available, so feel lucky that you do. Also, while it is life-altering, it isn't something deadly or painful...think of all the other diseases and conditions that are way worse.I personally think that you probably suffer from clinical depression and while you may be seeing a therapist (probably a psychologist who mainly deals with behavioral issues and 'feelings'), you may also want to also/instead see a psychiatrist, who deals more with the clinical and physiological aspects of mental issues--clinical depression frequently can be attributed to neurochemical deficiencies, which would require the attention of a 'real' medical doctor (psychiatrist). You may want to continue to also keep your therapist for your family/emotional issues, but you may want to explore the possibility that your depression also has physiological/medical roots. While I don't have these issues personally, I have dealt with this for over a decade, as my boyfriend (over 12 years) had childhood trauma to deal with AND was clinically depressed. He too, 'self-medicated' to basically numb himself, but what he didn't realize was that the pot was also adding to his depressed state...see http://depression.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=depression&cdn=health&tm=22&f=10&tt=12&bt=1&bts=1&zu=http%3A//www.druglibrary.org/schaffer/hemp/medical/ch7.htm. Among adults, pot use can lead to "amotivational syndrome", which has been used to describe
chronic cannabis users that become apathetic, socially withdrawn, and
perform at a level of everyday functioning well below their capacity
prior to their cannabis use. Basically, my bf's heavy pot use was so numbing, it basically paralyzed him from living life. It's a vicious circle...he was depressed so he used pot, pot accentuated his depression, so he smoked more pot...and the cycle continued. Once he quit, he couldn't avoid dealing with the trauma and depression...painful and difficult, yes, but wow...2 years later, he's a totally different man and FINALLY...I can see a real future with him. He finally dealt with his demons instead of pacifying them with pot. Have you considered that without realizing it, you may have been sabotaging your therapy for the last 15 years!?As a woman about your age, may I also offer some insight on your relationship issues? Women my age are usually pretty concerned (if not consumed) with the whole biological clock thing...I can't speak for all women, but honestly, if I had to start dating again (and believe me, in 12 years, I had serious doubts about my bf), although I am completely self-sufficient (I'm a teacher and also just finishing up my master's degree), I would still be looking for a 'provider'...someone who could handle taking care of a family. Honestly, I felt for so long that I was 'taking care' of my bf and being the emotional strength in the relationship, it was simply exhausting. While I stuck it out, it honestly was because I had already invested so much time and effort into the relationship. Granted, I love him dearly, but being strong for so long took its toll on me emotionally too. Women your age (early 30's) are going to often be concerned with starting a family...no matter how wonderful you may be, they only have so much time left to have family...if they're going to invest in a long term relationship, they just might not be willing to take the chance on someone who isn't emotionally solid. Until you get your emotional issues under control (and this includes ceasing to use alcohol and pot to avoid your problems), you just don't scream 'stability' to single women your age (who often are very concerned with their biological clocks!). Of course, there ARE women who will be understanding of your condition--if that was the only issue--but add on the emotional problems and substance abuse, and no offense, but that can simply be too overwhelming. Just some insight into the female mind...
You also mention that you have no friends or social life...while I can also sympathize (full well knowing how hard it is to hang out with people when you suddenly get sleepy), you just have to put yourself out there. Start being more active...do or find things that you enjoy...and try to meet people that have common interests. Might I also suggest to you investing some time doing charity work? Volunteer somewhere like a children's hospital or a homeless shelter...not only will you meet other kind and generous people (who knows, maybe a patient and empathetic FEMALE volunteer...wink!), but spending time with dying kids has a funny way of making your problems seem remarkably insignificant by comparison. Sometimes all of us need to put our problems into perspective...
As far as you 'offing' yourself...to do so now would be really stupid (and I'm sorry if this offends you, but cowardly too--just another way to avoid dealing with your problems). Besides, researchers are getting really close to a possible cure for narcolepsy...I'm betting within the next 10 years...so HANG IN THERE! Give yourself time to get your meds under control, deal with your emotional/substance problems, start cultivating relationships with people, and you'll be amazed how everything falls into place.
Of course, be sure to use this site as a support...like I said, there's no denying that this disease is a pain in the ass...sometimes you just need a place to vent your frustrations and this is a great place full of people that understand what you're going through. Don't give up! Start taking control of your life instead of letting your narcolepsy control it! Best wishes!
- Re: Feeling desperate baobabble 10:11 7/02/08 (0)