Wednesday, April 7, 2010

My Days Whith Cataplexy!

I stand looking out into the distance over the water.
I lean upon the tree for support knowing that I have overdone it.
I sit upon the base of a fallen tree. my cane close at hand.
for when I am very tired, I need that darn thing to stand.
I was startled by a biker as he rode upon the trail behind where I was sitting.
He had said hello, my head slumped down, I had a Cataplexy spell.
Thank God that I was sitting or I could have fallen to the ground.
The passerby had probably thought me rude,
you see I can not speak or talk or even move.
In about two minutes I am back, just more tired than before.
I put both hands on side my head and look into my lap.
I know the only thing to get me through the day,
Is too lay down and have a nap.
Even though I have times of anger.
where I want to do more,
I am tired of spilling dishes, and food falling on the floor.
I look over to where the truck is parked,
I must make my way, one foot in front of the other,
The feet seem to get heavier and heavier as I continue on my way.
Come on dear Lord, please just help me get to the truck.
This time I knew that I would need some luck
Walking towards me I saw my husband coming over the hill.
I knew he would be wondering why I had not stayed still.
He gently put his hand in mine, and offered me support,
He told me of what he had seen while he was out walking.
We made our way slowly the rest of the way,
and he helped me in the truck.
He said that I was really tired,
and I commented that I could not remember when I was so exhausted.
We laughed, because I say that everyday,
And as we laughed my head slumped forward
and I had another Cataplexy spell.
I am not complaining,
I am just trying to explain
what a normal day is for me.
I am careful when I hold a child and always sit down, 
I don't go on escalators, or swim, or go where the senses can be overstimulated.
No bright lights, no comedy clubs, no boats, no driving, even have to be careful
when I am cooking, or having a bath, or walking on the stairs. or talking to my friends, family
and neighbors, for you just never know what they will say, so I have chairs all over my yard,
so that I can be somewhat prepared for my day.
Note to self...there are always people much sicker than I  and though we all try to appear as if we are okay,
Be kind, don't be scared to ask questions, let them know your there for them.
If some of the fear and anger can be replaced by educating others,
then it is best just to be there. 
sometimes when people get sick, healthy people don't know what to say.
I don't think it is lack of interest, I think it can bring out some very 
uncomfortable and awkward moments.
Because my life has changed so drastically, and our lifestyle has changed,
alot of friends have stayed away,
Maybe it is because they can not stand to see me different.
I am okay with it, it is not like we can pick or choose .
I hope this has given you a little more insight
as to what Cataplexy is.
It is a symptom of Narcolepsy.
My cataplexy is considered very severe.
Medicine helps to keep it somewhat under control,
you just never know when an emotion will trigger it..
On that note, I am off to sleep.
Take care and be well.


  1. That's a very moving post. You are doing a fabulous service by raising awareness of cataplexy. If I see anyone who seems to have the symptoms you describe I will act more compassionately and hopefully be able to help if that help is required.

    Thank you. Take care, Angela xx

  2. Thank you so much for allowing me to share your day. I had no idea that such a thing as "Cataplexy" existed. I have heard of Narcolepsy. You are very brave and it has to be so frustrating for you.
    Kudos to your husband for kindly and gently supporting you. Many a man would have bolted.
    We never know what life will bring and I am so sorry that some of your friends have chosen to stay away. They are missing out on a wonderful, delightful!!
    I am totally blessed to have met you.
    Hugging you

  3. thanks for sharing this...i too had no idea and imagine it to be incredibly challenging at times. obviously this something they can manage with meds...any hope of a cure?

  4. Cinner, I never heard of this either although I do recall a friend of my parents suffering from Narcolepsy. Hugs your way....and hope ~ xo~ Janet

  5. *sigh* and *hugs*
    And hope for a great and restful nap!
    Weren't you up late posting comments?
    Me too! zzzzzzzz


    Oh my, such a true and powerful post. I felt every fear, every wonder and concerns, anger and wish. I know well how friends stay away and it hurts. I also know how some have stood by me and that the one's who can't, well, that is about their fears and has little to do with me. Although their absebce hurts, of course. sigh.........
    Were I near you I would always be close -

    Love to you my friend

  7. oh cindy...
    big hugs to you !
    for being brave and honest and loving and wanting others to know more about you !
    love to you......

  8. Thank you for sharing this personal information. I respect you even more for what you have to endure on a daily basis. Education is what we need, otherwise people will think you weird, strange, mad, crazy or rude...because they are ignorant to your situation. And this really scares them away like you said. If we understand, we get it!! Thank you for just being you!! I love that and you!

  9. Oh Cinner...what a deep post hon! So brave you are to put it out there! Thank you for helping me to understand you days and what you are going through! I cannot imagine what this is like..but know that I am here for you!
    There is no need to downplay your condition! We are all where we is our experience and what we do with it that counts. There will always be someone who is worse off..that does not lessen what you deal with every moment hon!
    Hugs gentle hugs and love, Sarah

  10. Dear Cinner
    Such a heartfelt post about your condition.
    I can imagine it must be very difficult all that you go through in a day and I think you are very brave and have lots of courage.
    Thank you for sharing dear and I hope you are having a very good day!

    Hugs to you!

    Margie :)

  11. Sarah, thanks for the lovely comment, when I first got it Sarah that was the worst because I did not know what was happening to me and without my medications the Cataplexy would last longer and what I have found is that very few people have ever even heard of it. I have read stories of people finally being diagnosed after 20 years. I just got up from an afternoon nap so I am good for about 3 see my days of being a party girl are over. lol I hope you are well, coming for a visit. Hugs

    Thanks Cora, Being educated about it is everything. When people look at me, they don't see that there is anything wrong with me, and some people with Narcolepsy never have Cataplexy. Thanks for your kind words, they mean a lot to me.

    Beth I wanted to explain it more because I always say I am going to have my best day....but lately I think how sometimes it is just such a struggle to get through the daily stuff, let alone try to visit someone, or cook, or walk....People have always said how funny I am. Now I have to watch myself and kind of keep withdrawn a bit. That is hard because there are a lot of things in life that strike me as funny. Thank you Beth, you have always been so kind. hugs to you.

    Gail, I know you understand because of your illness, that is why we connected so well. I know you understand that heavy foot in front of the other, and how much of an effort it can be. If I were near I know we would be there for one another. we already are. you are a trooper brave heart. Hugs to you.

    Anne, yes I am totally busted...I kept thinking of all the things I need to get done, so then my brain was in overdrive so that is when I came to the computer. All that worry last night does not seem to make me move any faster today...there is always tomorrow. Hugs to you. hope you are well. Will get that sent to you by the end of the week. Take care.

    Janet, thanks for visiting, there is always hope and it is free. yeah. Some people with Narcolepsy don't have the Cataplexy. I don't have where you just fall asleep in the middle of a conversation...which is good..It is a strange illness. Glad you are well, I keep an eye on you as you know. Take care.

    Brian, hi, there is no cure for it yet. Most people diagnosed with it usually between 12 and 20...I did not get this until 39, no known reason for it either. It is very strange that one day I was fine and the next not the same...I have done a lot of research and it seems to be more prevalant in Japan than any other country. Lots of people have taken years to be diagnosed because it is rare. Thank you for your interest. I hope the more people who learn about it at least will understand. Take care.

    SueAnn, thanks your a sweetheart....I think they are missing out too. lol. At least I am lucky because I had a doctor that told me right off the back that he had no idea, but I was in to see a Nurologist asap. So I found out relatively very quickly. Once I knew I at least knew I was not checking out which gave for a great peace of mind. I am so glad you got the job and I have been watching your wip every day....I think to myself, how does she do it and have time for blogging too. Take care. Thanks for your kind comments.

    Angela, if you type Cataplexy on You Tube, there is a fellow from the UK. His story is the most accurate, He can not go anywhere unattended....You might find it interesting. Take care my friend across the way. you are a dear.

  12. Margie, thanks for your kind words. Some days are better than others, today is a good one, of course I just woke up from a nap...The more tired I get, the more cataplexy I I just keep napping and do as much as I can when I am not tired. Thanks for all your comments. I really do appreciate them. Take care.

  13. I love how you share and explain your illness to us.....I too have many health issues but I try to focus on other things.....with yours you have no choice as it effects everything about you and your life.....I hope I can be as strong as you are my friend....:-) Hugs

  14. Cinner, What a post-- I am so sorry you have to deal with this but I love your spirit and attitude.

    Be kind to yourself and have a lovely nap.

    I'm cheering you on,

  15. You have such a calm peaceful way of explaining your condition, Cinner. I'm impressed with your uplifting attitude. We all should be so accepting of ourselves. I'm not very familiar with your condition, but was aware of it, I think I may have seen a special or medical show pertaining to it. You are a strong person, Cinner.

  16. So glad your hubby was nearby! You seem to have a pretty good attitude. I know it must be hard to be dealing with something that so many people have never heard of! And it's okay to have a "feel sorry for me" party! I have them often and they make me feel better and when we're really down, that's when we need to start thanking the Lord for the good things we have in our life. Which I believe you did by realizing there are other people out with worse things. You have a lot of strength and are a ray of sunshine!

  17. Bernie, I have found you to be a very strong and kind woman. look how you are always helping others. I know you will be strong as you have for so many others. I pray for health and happiness Bernie. Have you been in your yard.
    Thank you for all your kind and sincere comments, they really do mean the world to me.

    Joanna, some days are better than others. It feels better to talk about it though. This is now my normal...Thank you for always finding the timee to come here. take care.

  18. Wanda, I have had a few years to adjust to this, actually seven. The best thing I can do for myself is to accept it and be the best I can now. I love your blog and am so glad you stopped by here. I believe most people are very strong when they have to be. take care for now, and thank you.

    Lois, Someone is usually nearby when I go out. I walk a couple blogs around my home and can do this in the morning, by the afternoon I can't so I try to do what I can. Example I have been cleaning house for 3 days every morning for about an hour. At this rate I will be done by Summer. lol. How are you managing, I have no strength at all compared to all the army wives waiting for their husbands to return. I wish he could be there with you.. my prayers with you and yes God is always there for us. Much love.

  19. Thank you for posting this. I think a lot of times people are afraid to ask questions because there are some people that are not as open as you are. You are a brave, brave lady!

  20. Cinner, I had no idea you had this. Thank you for sharing your story and making all of us aware of Cataplexy. I'm glad you continue to live and haven't let this take your spirit away.

  21. Shell, oh no it would take alot more than that, once I realizedd it was not going away then I could come to peace that this was the new me. thank you so much for your interest, and your kind comments. Take care.

    Gayle, maybe so....I used to say I am doing okay, but that tells them nothing and then I would find myself angry when they would want me to go out and do certain things. I think they feel awkward because of not understanding it. Thanks for your comments and your interest in this. Be well.

  22. I think you should write a book!

  23. J.s. someday my friend, someday, there will be a chapter about you, you know and all our fun. are you scared. kidding, love you.

    Char, thanks, you too.


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