pregnancy and Narcolepsy
Posted 06 October 2007 - 10:18 PM
Posted 07 October 2007 - 09:39 PM
Posted 08 October 2007 - 01:22 PM
I'm lucky in that I am self-employed and can set my own schedule during the day, so I pretty much really on my naps. A lot. It was easier with my first pregnancy because I didn't have an active toddler to look after, which does limit my napping some. But I just keep focusing on getting through each day the best that I can, knowing that this isn't going to be forever and I'll get on my meds asap after the baby arrives. I have a little caffeine if I need to, but it's not safe to do too much of that either. Only if I feel desperately tired do I do that.
I breastfed my first for 6 months, which is alot further than I thought I would get without being on the meds. I don't know if I'll get that far with it this time, but I'll just do the best I can.
So my best advice is, if you can, get on a strict sleep schedule for your nights, and then if you can, nap when you need to during the day. My lifestyle changes dramatically during pregnancy, but like I said, just do the best you can each day to get through.
Posted 08 October 2007 - 04:50 PM
Posted 08 October 2007 - 07:30 PM
Posted 08 October 2007 - 09:34 PM
It was nice to hear that someone else is making it through, it gives me a little hope to try it again.
Posted 09 October 2007 - 09:42 AM
On a more positive note - the way I try to look at it- I try to think about that less than a year ago I had no idea why I felt the way I did. At that time I was feeling extremely awful napping all the time then going to work and going to bed. So I say to myself I did it then when I had no idea what was wrong with me. At least this time I will be doing it for a reason and will know that I can once again feel better that it's not forever!
Posted 09 October 2007 - 03:49 PM
Unfortunately, working isn't optional for me right now, which makes me very sad. I don't know how I can bring a baby into this world while keeping a full time job. As is right now, I'm totally spent by the time I get home from the office, and it only seems to be getting worse.
I guess I'm just adding that I completely relate to what you're feeling right now, and I want to thank you for posting. I feel very sad, frustrated, and isolated when it comes to this topic, so any discussion like this really helps. I hope we'll one day figure out a way to do it all. In the meantime, I wish you all the luck in the world.
Posted 14 October 2007 - 10:27 PM
Posted 14 October 2007 - 11:09 PM
Posted 24 October 2007 - 10:28 PM
Posted 25 October 2007 - 11:33 AM
I was u ndiagnosed when I had my kids, so it was moot for me, but I can tell you that by late afternoon, i wasn't a very fun Mommy. it was all I could do to get one leg in front of the other. I did have high fatigue when i was pregnant, if it was related to narcolepsy or not I don't know. My sleep neurologist, by my history, figures my onset was about when I was 15.
I wish I would have known sthen what I know now. My kids came out great, but I could have been better! Thank God for blessings.
Posted 05 November 2007 - 12:34 AM
Posted 12 December 2007 - 12:09 AM
Posted 12 December 2007 - 03:18 PM
It was helpful to try and maintain a schedule. I worked while I was pregnant. That was difficult at times. I breast fed for 6 mts and then started my provogil again. I did not work after I had my son and was off my meds. I tried to go back after I was back on my meds but it was difficult because your hormones are all messed up it takes time for the meds to work again. Also, because there is that lack of sleep issue to deal with. I would take as many naps as I could while he napped. Exercise helps, it gives you energy. If it was not time for him to nap and I felt very sleepy I would make sure he was in a safe place, ex. swing, bouncy seat, packand play and sit with him and play but if I fell asleep I knew he was safe. As he got older and did not fit into those anymore, I would "barbcade" him in wiht my body and then if he tried to climb over me I would wake up. Now that he is 28mts, and if I am reading to him and I start to fall asleep, he grabs my face real gently and says wake up momma, it is not sleeping time and I continue to read.
It will all work out with alot of patience and careful planning by you and your husband. People would laugh because I kept everyting very organized, but it was easier to accomplish things with them organized. The other big thing that is harder to do than people think is ask for help. But be willing to. And do what you need to do to make it through.
Posted 13 December 2007 - 09:00 PM
Posted 13 December 2007 - 09:27 PM
Posted 15 December 2007 - 12:47 PM
Posted 29 April 2008 - 02:52 PM
I did want to add one thought. If you are working and don't have disability insurance, please get it!!! I was a teacher for 9 years, and I had disability insurance. Yes, it was a bit more expensive, but I opted for the plan that kicked in after I was out of work for 5 calendar days. This was an absolute life saver for us. My first trimester was during the summer, so I basically went into hibernation....no problem. Then, my second trimester was when school started. I did alright because the 2nd trimester is when you get your energy boost. The third trimester knocked me out. I had to go on maternity leave 2 months because I physically couldn't stay awake to teach my 1st graders. At first the disability insurance denied my claim, but after several letters from both my neurologist and ob/gyn, they accepted my claim. Without that money, we would have been in deep financial trouble since I was out of work for over 4 months with the pregnancy and maternity leave. Please make sure you get it before you get pregnant.
Posted 23 August 2008 - 01:33 PM
My question is, can I apply for disability or any other assistance before I get pregnant? I always assumed that I couldn't, but if anyone knows otherwise, please share. Thanks.