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marilynliz Says:
When I first got the diagnosis, narcolepsy, I panicked I didn’t want to know I was “sick”. I felt alienated from everyone who wasn’t “sick.” I reached out to my friend with MS just to say, “How do you deal with this”? Then I started reading patient stories on the NNetwork. I felt that I found family I never knew I had. Denial broke down. Then my first thoughts went to what can I do to help them? I never knew. I had understood nothing about narcolepsy. I was the clinical director of mental health agencies and I didn’t know. I should have known. Why don’t all social workers know? How many people treated for depression for years could have better treatment if social workers, counselors, psychologist, psychiatrist knew? Why aren’t there continuing education programs for psychotherapist on sleep disorders. I grabbed narcolepsy and made it my cause. I wrote my patient story and submitted it to NNetwork.
I wrote a book review on The Little Sleep and submitted it to Talk About Sleep. (Tracy said it will finally be in the next news letter) Then the stimulants I was on caused a major BP spike that landed me in the hospital for 3 days…so what has changed? I now know I am sick and I have to accept that I can’t do everything I used to be able to do…it has been almost a year. I once thought I would just take my meds and be fine. Now I know it isn’t that simple. N is here to stay and it won’t ever let me forget it…but I am doing ok…I am different, but I am ok.
Posted on October 18th, 2009 at 9:16 am
marilynliz Says:
I love the “bite size life” concept. With everything we try to help others understand about narcolepsy the idea that experiences are disconnected almost surreal is one of the hardest. We don’t just have a disease that makes us tired. We have a disease that makes up experience reality ( awakenness) differently-in bite size pieces that require we fill in the blanks-blanks caused by half-sleeps and automatic behavior-all the REM intrusion stuff.
For so many years I thought I was a gifted dreamer. People would seem so fascinated that I recalled so many dreams…I never made the connection that I remembered dreams clearly but yesterday only in fleeting bits and pieces. I only recently came to understand that over dreaming may lead to “under remembering’, because it is theorized that long term memories are laid down during non-REM sleep…and many of us all but skip over that sleep phase.
Sometime I just explain N as “sleep gone wild”…we have all the normal aspects of sleep just all…. out of sync and out of order. Cataplexy and sleep paralysis aren’t a exotic symptoms, everyone healthy sleeper experiences muscle paralysis. We just do it at the wrong time. Everyone dreams; They just don’t dream when they are awake.
Posted on October 18th, 2009 at 9:34 am
marilynliz Says:
I am going to the Narcolepsy Network Convention on Friday. It will be my first convention. Last year, this time, I didn’t know I had narcolepsy…I didn’t know Jack-shoot about narcolepsy. I didn’t know there was so much to know about. My friends and family tease some about the narcolepsy convention…can you see the comic? Everyone head down with z’s in their thought bubbles. My husband commented that it would be a challenge as a speaker to keep your audience awake. Friends ask if I will be wearing jammies to the meetings. I smile too…the jokes are just so easy…and I’ll be darned, I read the itinerary today and there really is a pajama party were you do come in your jammies. PWNs definitely have senses of humor. We have to. You know what I am curious about? Am I going to see someone have a catalepsy? That seems awful…what am I a gawkier? No, not really. Ever sense I started reading about narcolepsy, cataplexies have scared the begibers (spell check doesn’t know the word) out of me. I don’t get them. Not what I consider real ones. When I am embarrassed or frustrated I feel funny, even a little weak kneed sometimes;Maybe a little slow in speak for a while. But I don’t do the drop to the floor thing. I have never done the drop to the floor thing. There was one time I know now I had a “real” cataplexy; Must be 10 years ago now. I was walking in Meijiers-like a Walmart type store-with my kids. My foot seemed to slip out from under me. I caught myself on a clothes rack. I thought there was a wet spot on the floor. I put my foot down again and again it went out from under me. The floor was dry. I remember thinking this was “odd”. I was calm. I called my oldest son over to help me. It all just seemed weird. My left leg just wouldn’t work. My plan was to walk, with my son’s assistance, to the front of the store to use the pay phone to call my doc. Plain clothes store security came over to see what was wrong. They asked me questions. Had me smile-all the stuff I know now was stroke assessment. I was fine. I rested on a bench and slowly, very slowly I felt my leg coming back to life. It was difficult to move but I could move it a bit. I decided not to call the doctor just then. I would give his office a call in the morning…believe it or not my leg got better and I stopped in another store before going home. This January in the midst of denying that I could possibly have narcolepsy; ranting to friends that I needed a second opinion, I remembered that odd thing that happened almost a decade ago…oh my gosh! an epithony! I did research and yes, you could get the muscle weakness of a cataplexy in just one limb.
The next day the doc ordered an MRI to rule out stroke. It was normal. He said it must have been a TIA. I read about them. Ok, it was a TIA…In January I realized It wasn’t a TIA. I reviewed most of my adult life and realized I did have narcolepsy and I had had narcolepsy for about 20 years. Wow. Anyway, I am going to the conference on Friday. Right now I consider myself to have narcolepsy without cataplexy. But I feel it is always a possibility. It might happen to me at any time. I tell myself that Xyrem is prescribed as a cataplexy preventative so I am covered. I have tried to figure out if that one episode might have been during a brief period when I was off Prozac, and I am back on Prozac. What will I feel when I see someone go down? Sympathy of course, empathy of course. But will it scare the hell outa me? I have been a regular member on an online support group for months. So many people there seem to have symptoms so much worse than mine. They are dear people. On my bad days I think of them because so many seems to have all bad days. What I experience a few days a week they experience every friggin’ day. I am excited about going to the convention. After all these months of reading everything I can find and chatting with dozens of PWNs, I fancy myself an expert on narcolepsy. I think I will learn how little I really know about narcolepsy.
Posted on October 18th, 2009 at 9:14 pm
marilynliz Says:
I have known 4 women in my life who are breast cancer survivors. I think everyone I know has known someone who has survived or has died of breast cancer. That is pretty significant. I do my monthly breast exam and get a mammogram every 2 years. I know that only 20% of people who get breast cancer have a family history of breast cancer. Did you know that breast cancer is actually several different diseases? I don’t know the exact kind of breast cancer people have had just that breast cancer has changed so many peoples lives. I care about breast cancer.
Two members of my congregation have MS. One has a neighbor who has narcolepsy. My mothers best friend’s daughter has MS. A friend of mine who has Reiter’s syndrome has a son with autism and a daughter diagnosed with MS. I have two other friends who have children with autism. I have a friend with Grave’s disease. My husband’s closest friend’s wife has Crohns disease. My friend’s son has Chrohn’s Disease. 3 of my cousins have narcolepsy. I grew up with a boy with type 1 diabetes. There is a teenage girl in my neighborhood who has type 1 diabetes. My friend’s sister has Lupus. Did you know that these are all autoimmune disorders? (Autism is in the category of suspected autoimmune, where narcolepsy was categorized until just recently) How many people know that these and many other disorders are all autoimmune disorders? How many people understand how many people lives are changed by autoimmune disorders? What are the “politics” that stop all the different autoimmune disorder organizations from making a cooperative effort to educate the public?
Posted on October 20th, 2009 at 9:10 am
Main Man Says:
marilynliz, I too will be (technically I am already there) at the NN convention this weekend. I hope our paths cross. I found your possible cataplexy story fascinating because I too would put myself in the n without c category. Ironically, I experienced something strange in my legs too and it coincided with me being off Prozac. I had not been diagnosed yet (in fact my upcoming sleep study was the reason I was off of Prozac), and I found that my legs just did not seem to work when I was exercising. I could still walk, but running was horribly painful. My calves just would not do what they were supposed to do. Also, since you brought up the possibility of seeing someone have a cateplexy attack, I thought I would let you know that many PWNs at last year’s conference (which was my first) commented on how few people did go down. Many think it is because Xyrem is much more widely prescribed now. I hope we meet. Thanks for sharing your stories here!
Posted on October 23rd, 2009 at 10:00 am
marilynliz Says:
We may have met, but how would I know? No name tag said, “Main Man” = D
I was the middle aged women with the leopard handbag…boy, that sounds awful. How about, I was the stunning, redhead with the leopard handbag.
Posted on October 26th, 2009 at 3:11 pm