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I have a chronic disease. Narcolepsy with cataplexy. Sometimes, I wonder why I can't control the symptoms anymore when I was able to work all my life. Dancing around the fatigue, sleepiness, cataplexy. Here's what I do now to ease my mind of worrisome thoughts and negative thinking. I take a walk in the morning and bring my phone or camera. I try to find something unusual or inspiring from nature. It makes me feel alive and brings me peace of mind. Some days, I can't make it out the door, but on the days I can, this is what I do. I hope you can open the files below.
These are really beautiful photos. Thank you
Dear sleepyonew5 - I'm glad you liked the photos. Unfortunately, this kind of natural beauty is not what I see everyday! I'm back home in the city and although I try to get out, I'm too miserable to take my camera out. They're doing a lot of construction and it's noisy and there's nowhere to really walk except down by the river. I don't feel comfortable walking that far and wouldn't drive that far for a workout. Oh well! Hopefully I'll get back up to the mountains soon.
I haven’t written in a while so please excuse me if my writing is simplistic and obvious. As we begin this new year —- 2014 —- (I never thought I would make it this long), I am wishing all of you who read my blog and/or share my illness the ability and drive to make it a better year than 2013. I plan on exploring my spirituality and accepting my new reality in 2014. I want to explore ancient healing arts, listen to my spirit guide through intentional meditation, and step outside my comfort zone to help someone other than myself deal with the everyday struggles of having narcolepsy with cataplexy. Over the past few years, I started to judge other people who had found a way to function and share their special mix of prescription meds and coping mechanisms to get through the day. “Sure that works for you, you’re only twenty-five,” I would tell myself. Now, I will not give in to that kind of self-pity. I have already lived half (or more) of my adult life in a depressive state of mind, sometimes actually jumping over to the “clinically” depressed side. I have wasted so much time. How much time do I think I have left here on this planet, anyway?
I have decided that this will not be my fate. I have control over my mind and body. I have control over what I believe to be “true” in this world. I won’t be stifled, I won’t be ashamed, I won’t hurt anyone with words or actions, I will love unconditionally, give unconditionally, and affirm my uniqueness. Instead of worrying about inconsequential questions , such as, “Did I do the right thing?,” or “Does this or that person think I’m crazy?,” I will focus more on the things I have done right (being a mother and nurturer) and less on my failings as a wife, mother and worker (zoning out emotionally, making mistakes, falling asleep, being demoted).There’s no sense in trying to rewrite history, so we might as well move on a little wiser and hopefully, a little stronger in our resolve to make every moment count.
Love your post Coping! so beautiful and right on!
These are wonderful resolutions, Coping. Keep the faith!
Hi Everyone, I believe that creating something beautiful helps me cope with this illness. I learned how to crochet on the internet and here are my creations. Hope you can find something to do that gives you hope and joy.
So pretty! What a useful skill!
Congratulations to Ben Munoz for his brave decision to return to medical school! You are a very special, inspiring person and I wish only the best for you today and in the future. If yours is not a success story, I don't know what is!
Best regards,
Copingwithnarcolepsy (Kathleen)
what a great note Kathleen!
So pretty! I also love to crochet!
copingwithnarcolepsy said:
I look through this discussion from time to time to be inspired all over again. I just love Copingwithnarcolepsy’s photos of the mountains are so beautiful and the crochet work is lovely. I too live in a big city, London UK, and though I love London I do long for the days when we lived in Bavaria and could go walking/climbing in the mountains at weekends.
I love to sew, though these days it is more a case of mending or patching up, not very creative, but am a useless knitter or ‘crocheter’. We need to create things where we can and in my case it is simple celebration cakes. Mostly for children’s birthdays though one of my favourites was a training shoe cake for my brother when he ran his first marathon aged 50!
That is an excellent cake. :) When my kids were younger, I used to challenge myself to make whatever kind of crazy cupcakes they wanted for their school birthday parties. I did tree frogs, clownfish, caterpillars, and for my macabre son, skull cupcakes one year. It was fun. The hardest cake I ever made was a lighthouse cake for my sons' Cub Scout Cake Day. Three feet tall, with pretzels for windows (the grid-shaped ones), and small, rectangular red licorice bits for bricks.
The lighthouse sounds spectacular! I did Jabba the Hutt once, such good fun.
It took awhile to come to this decision but I finally decided that since my sleep was so erratic, that I use my awake time to accomplish as much as I possibly can. I did not want to entirely sleep my life away.
I have sewn lots and lots of clothing, tons of curtains, lots of quilts, done upholstery, lots of embroidery, vegetable gardening, baked gingerbread houses, and my latest endeavor is miniature gardens.
I have had N since I was 14 but I wasn't diagnosed until I was 36. It was a relief to finally find out why I was so bloody tired all the time. I have tried numerous medications, been thru 2 med trials and have tried all kinds of natural remedies. Had my periods of depression. Raised 4 children before I was diagnosed. Worked as a waitress, 3 short lived office jobs, housecleaner, gardener, owned 3 restaurants, totally ran 1 of them by myself. I am now 74 and do estate sales with my daughter.
I often think that if I didn't have N, I could really accomplish a lot. In my old age, I have slowed down quite a bit but I am still "truckin". I probably have ocd and add but I very rarely go to doctor and do not have any primary and I don't want a counterful of medications. I go to Stanford once a year in order to get prescriptions for desoxyn, which is the only med I take. In reading people's stories on all the facebook N sites, I truly believe a whole lot of people are being overmedicated and it is hurting them big time. Most docs do not know that much about N and experiment with your body to find out what helps the most. There really isn't anything that does. I do have the whole enchilada of N and I cope with it. I never wanted it to run my life.
I am lucky that I have had a supportive husband for 56 years and a wonderful family and friends. But none of them fully understands how difficult it really is to keep pushing myself. That's o.k. because I don't want to complain all the time, either.
Sorry, this is so lengthly but as I have lived with this so long I could really write a large tome.
Photos of some of my mini gardens which I love to do. I have done 10 so far.
84-minigardens002.JPG (1.09 MB) 85-minigardens006.JPG (1.08 MB) 86-minigardens008.JPG (1.06 MB)Lovely minigardens, sleepy! Creative and magical. Thank you for sharing your story -- it's inspiring. :)
dancermom said:
Lovely minigardens, sleepy! Creative and magical. Thank you for sharing your story -- it's inspiring. :)
Thank you, dancermom. It sounds kind of bragadocious but I really don't mean it to be. Iike I said, I had many periods of depression which rob you of the small amount of energy that you have and came to the conclusion that I couldn't go on like that anymore. I really, really have to force myself each and every day to move. Mind over matter is the best medication there is.
Wow sleepy, you have achieved a great deal! The gardens are so pretty and I guess from the photos with the intense colours that you live somewhere lovely and warm.
