Friday, May 27, 2011


It's 2:30 in the morning and I can't seem to sleep for more than 20 min at a time.Today was an okay day. I only threw up once, dusted myself off and went about day. I try distraction, sometimes it works, other I am completely bedridden. People look at me and say you look great. What they don't understand is how sick I am inside, people ask and I try to explain the syndrome as best I can. I get the same answer, each and every time. It's so frustrating, because it's something thats not visible.
I thought having kids was hard, but living with this disorder takes the cake. I try to smile, I try to stay positive, but I never know when I will be sick or how long it will last. I just wish I felt well. It's so depressing at times. My friends and family see the day to day struggles I have, but they don't know what's really going on inside. Besides feeling sick, at times I feel mentally broken.


  1. I know exactly how you feel. I also have 3 beautiful children. I feel like I have let them down continually throughout this illness. I never know if I am going to be sick for school programs and functions. I can never commit to any plans because I never know if I will be sick or how sick I will be on any day. The isolation alone makes me feel crazy. Medicine helps but since I lost my job as a nurse (because of my illness) and my husband one year later lost his job at the high school(for missing too many days to take care of me) the health insurance is gone. I have definately struggled through stages of this disease. The latest one is that my body decided it doesn't need to all. The mental breakdowns grow increasingly worse as the nights go by. I have tried melatonin, narcs, benzos, sleeping pills,and multiple combinations of them all. Nothinig works. Then I panic knowing I will go another night without sleep. The medicine my Dr. recommends is an antipsychotic that costs over $200 a month, plus has horrible side effects. Anyone know any tricks to sleep?

  2. First I want to apologize for not responding to your post sooner. If you read my latest entry you will understand. I am so so sorry for the suffering you are going through, I know it all to well. All I can say that as miserable as I am at times, I still try to smile at the end of ther day or at some point. For whatever reason sleep does not seem to be my friend either at times, but i will share what works for me sometimes. Ambien has to be one of the sleeping aids that works sometimes. The trick is, make sure you take it on a empty stomach. I also break the pill in half before I take it so it breaks down and gets absorbed faster. On top of the Ambien I also take Ativan soemtimes in coonjunction with my anti-nausea meds and it also helps to settle me down a litte. Last year I went on a cruise and the doctor prescribed me TransDerm Scop patches. They are motion sickness patches that go behind the ear for about three days at a time. After the cruise I discovered that the patches would help me when nothing else would. Unfortunately there are side affectcs and the biggest one being my eyesight. It dialtes the pupils and therefore makes it hard to see sometimes. I just make sure I have my glasses on hand when I have the patch on. Now the patch is not a cure all but only a temporary fix, but hey I will take what I can get as far as relief is concerned. As far as your financial situation, you can sometimes conatact the manufacturer of whatever medicine you are taking and they might help you cover the cost or co-pay of the medicine.. If there is anything I can do for you, which isn't much besides providing you with emotional support and tips and tricks, please do not hesitate to reach out to me. My email is
    I wish you all the best......Linda