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#1 kimmie

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Posted 23 October 2009 - 08:48 AM

Hi everybody my name is kim. I was diagnosed with narcolepsy with cataplexy. I have 2 small kids, 7 and 22 months. and a husband who loves me very much and has suck by me thru alot of stuff. For the past 5 years I have been really sick staying in bed for at least 14 hours a day. Since I have started the meds. for narco. it has been a little difficult ajusting to life I have relized how much of my kids life I have missed. And I had a really bad dr that basiclly told me that it was all in my head. I am so mad at this dr. and i have been going thur alot off ups and downs. does anybody have any suggetions on how to deal with all these changes I am going thru.

#2 Saraiah

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Posted 23 October 2009 - 11:39 AM

Hey Kimmie,

I finally got diagnosed with narcolepsy after 19 years of symptoms this past July. My situation is different from yours in that by the time my narcolepsy symptoms became extremely disabling, my girls were already I guess 14 and 17, so didn't need my attention so constantly as little ones. But nevertheless, I was barely available to them at all over the past 15 months, as I'd barely survive the workday (literally) and then collapse into bed the second I got home. And the guilt during and after has been intense. I know that it was very difficult for them, and for my husband. But they have survived, they're ok, and they have the benefit now of the knowledge that I was unavailable because I was ill and not because I didn't want to be with them.

My take on the whole thing is this: First, kids are very resilient. Even kids who have experienced the complete absence of a parent, say, when parents serve in Iraq, do ok when they are loved well by other parents/caregivers, and they usually rebound when the missing parent returns. You were not in another country, and now you are happily able to be much more present. AND your 7 year old is old enough to understand that Mommy has been ill her/his entire life (that he/she can remember) but the doctors FINALLY figured it out, gave you the right medicines, and now you still have the illness but you are so much better! As long as you sensitively and truthfully explain (probably many times) what happened, and that you are very unlikely to ever be so sick again, and that it's very unlikely that your 7 year old or Daddy or other significant people will get sick like that, the world is going to settle into a joyful and understandable place for your kid.

For your little one, the best thing you can do is just be present, be loving, do lots of holding if he/she likes it, and this child is extremely likely to be just fine too. Even if it was tough not to have you as available as he/she wanted, there was another parent around, and now here you are! This child will never remember missing you, and if there's any worry in his/her heart about your being available, you can gently and slowly heal that worry just by parenting well, with lots of extra cuddling if the toddler needs it.

You might find that both kids take awhile to adjust to the new routine and having you more around and available. They may act angry at times, or unconsciously "test" you with provocative behaviors to see whether you're going to stick around more even if they behave badly. If you and your husband are both loving, and consistent, and set appropriate limits while telling both kids that you love them but not their bad behaviors, things will likely settle down.

And for you yourself, you have both celebration and grieving to do. It's a mixed bag: you're better than you were, but you've learned you've got a lifelong chronic illness; you're with your kids more, but you see what you've missed with them; the docs finally figured out what was wrong, thank God, but why did it have to take so very long?; and you might also be wondering what else might have been different in your life if you didn't have this damnable illness. At least, that's what it's like in my head these days. What I do is talk, write, take walks when I feel like screaming, take walks when I need to cry and don't want to do it around my kids, journal, talk with my old friends, make new friends who have narcolepsy and actually understand what my life is like, try to hammer out a new agreement for who does what around the house now that I'm home all day... It's a lot to think about, be angry about, be joyful about... I expect you may suddenly be faced with the question of how you might like your life to be different now that you unexpectedly have the energy to stay out of bed more often; I'm trying to figure out a life that is at least temporarily colored with a complete inability to work and the resultant financial changes that brings. My way of dealing with it all is to talk, write, work with a therapist, and talk some more. It's a good thing I've got plenty of friends amongst whom to spread out all this talking I'm doing! ;)

I think the absolutely most helpful thing I've done personally was to start a narcolepsy support group where I live. There was a prior support group that I slowly realized was largely defunct. I just posted invitations to others to meet in the area where I live her on NN, and soon I'd met 3 other people just diagnosed with narcolepsy, and now I think I've met 14, and it's growing. The best part of sitting in a room of other people with narcolepsy is that, as we talk together, I realize that a lot of the things that I believed were my character flaws are actually symptoms of narcolepsy, and that is such an unbelievable relief! Plus, everybody there gets my narcolepsy jokes. :lol:

So, I hope something in there was helpful. When I tread too far into guilt, regret, and recriminations for being unavailable to my kids for so long, I remind myself that this is a disease that I neither chose nor understood. And now, things are getting better. And I make sure to give my kids an extra-special scratch on the back (since they won't allow me to hug them much, those eye-rolling teenagers), and my husband too, and tell them how much I love 'em.

Saraiah

#3 kimmie

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Posted 23 October 2009 - 06:33 PM

Hey Kimmie,

I finally got diagnosed with narcolepsy after 19 years of symptoms this past July. My situation is different from yours in that by the time my narcolepsy symptoms became extremely disabling, my girls were already I guess 14 and 17, so didn't need my attention so constantly as little ones. But nevertheless, I was barely available to them at all over the past 15 months, as I'd barely survive the workday (literally) and then collapse into bed the second I got home. And the guilt during and after has been intense. I know that it was very difficult for them, and for my husband. But they have survived, they're ok, and they have the benefit now of the knowledge that I was unavailable because I was ill and not because I didn't want to be with them.

My take on the whole thing is this: First, kids are very resilient. Even kids who have experienced the complete absence of a parent, say, when parents serve in Iraq, do ok when they are loved well by other parents/caregivers, and they usually rebound when the missing parent returns. You were not in another country, and now you are happily able to be much more present. AND your 7 year old is old enough to understand that Mommy has been ill her/his entire life (that he/she can remember) but the doctors FINALLY figured it out, gave you the right medicines, and now you still have the illness but you are so much better! As long as you sensitively and truthfully explain (probably many times) what happened, and that you are very unlikely to ever be so sick again, and that it's very unlikely that your 7 year old or Daddy or other significant people will get sick like that, the world is going to settle into a joyful and understandable place for your kid.

For your little one, the best thing you can do is just be present, be loving, do lots of holding if he/she likes it, and this child is extremely likely to be just fine too. Even if it was tough not to have you as available as he/she wanted, there was another parent around, and now here you are! This child will never remember missing you, and if there's any worry in his/her heart about your being available, you can gently and slowly heal that worry just by parenting well, with lots of extra cuddling if the toddler needs it.

You might find that both kids take awhile to adjust to the new routine and having you more around and available. They may act angry at times, or unconsciously "test" you with provocative behaviors to see whether you're going to stick around more even if they behave badly. If you and your husband are both loving, and consistent, and set appropriate limits while telling both kids that you love them but not their bad behaviors, things will likely settle down.

And for you yourself, you have both celebration and grieving to do. It's a mixed bag: you're better than you were, but you've learned you've got a lifelong chronic illness; you're with your kids more, but you see what you've missed with them; the docs finally figured out what was wrong, thank God, but why did it have to take so very long?; and you might also be wondering what else might have been different in your life if you didn't have this damnable illness. At least, that's what it's like in my head these days. What I do is talk, write, take walks when I feel like screaming, take walks when I need to cry and don't want to do it around my kids, journal, talk with my old friends, make new friends who have narcolepsy and actually understand what my life is like, try to hammer out a new agreement for who does what around the house now that I'm home all day... It's a lot to think about, be angry about, be joyful about... I expect you may suddenly be faced with the question of how you might like your life to be different now that you unexpectedly have the energy to stay out of bed more often; I'm trying to figure out a life that is at least temporarily colored with a complete inability to work and the resultant financial changes that brings. My way of dealing with it all is to talk, write, work with a therapist, and talk some more. It's a good thing I've got plenty of friends amongst whom to spread out all this talking I'm doing! Posted Image

I think the absolutely most helpful thing I've done personally was to start a narcolepsy support group where I live. There was a prior support group that I slowly realized was largely defunct. I just posted invitations to others to meet in the area where I live her on NN, and soon I'd met 3 other people just diagnosed with narcolepsy, and now I think I've met 14, and it's growing. The best part of sitting in a room of other people with narcolepsy is that, as we talk together, I realize that a lot of the things that I believed were my character flaws are actually symptoms of narcolepsy, and that is such an unbelievable relief! Plus, everybody there gets my narcolepsy jokes. Posted Image

So, I hope something in there was helpful. When I tread too far into guilt, regret, and recriminations for being unavailable to my kids for so long, I remind myself that this is a disease that I neither chose nor understood. And now, things are getting better. And I make sure to give my kids an extra-special scratch on the back (since they won't allow me to hug them much, those eye-rolling teenagers), and my husband too, and tell them how much I love 'em.

Saraiah


saraiah,
thank you I needed that. Everything you said is so true in my head I felt like I was going crazy It helps to know that there are pepole out there that really know how I feel. I hope that your work situion gets better. and thank you once agin