L Cala

March 5, 2009 at 1:00 am

[QUOTE=L Cala]I am struggling. I have no energy whatsoever. I could literally lay in bed all day and night and still don’t get enough sleep. I have tried to push myself, get myself on a good schedule so that I sleep through the night and can function in the day but unfortunately it’s not working. I am awake until about 2 am even if I take a sleep aide. Then once I fall asleep I can’t seem to wake until 12 noon. Then I can’t seem to function until about 2pm and even then it is with effort. I am so bummed and am beating myself up. I hate not having energy and just wonder if this is part of the whole CIDP thing or if it is the Diabetes or the Sleep Apnea. I just feel like a useless waste product and feel like such a loser. I am only 42 and I watch people older than me doing so much more. I used to be so active. Yoga, xxsking, working and such but now I am so unable to get myself going. I try, I try and do modified yoga, I try to paint, I try to crochet, I try to clean and can’t seem to be o.k. with even those efforts. I just wonder if anybody else struggles with this. Thanks.
Cala: Just dropping in for a minute. My husband does not have cidp as he was misdiagnosed however they have some of the same symptoms. He has amyloidosis. I am not suggesting you have that at all but he does have sleep apnea and that in itself causes you to be very tired. He is not using it and I am tired of him putting it off. I know he hates the mask but he needs to check on a new one as they come out with new ones every so often that are more improved. He is a mouth breather which does not help since he is not using it. Also not a diabiatic but I have a dear friend who does. She is not taking good care of he eating habits, is over weight , not getting enough exercise. Now skip the exercise for now but you do need to watch things carefully. She sleeps alot. Again my husband gets more tired if he has does alot. It helps him to take a nap during the day. There was a time when he could not stay awake after dinner. He must have slept 12 hours or more on some days. I believe some of this was depression. He and I are both on an antidepressant pill which is helping alot.
His sleeping is better and I as you can see is due to my work on the computer in regards to his disease. He no longer gets on it so I have to pass on info to him. I need to get more sleep that I have been getting but I am working on it.

Hope I have helped somewhat. I know his disease is not the same but that is one reason he was misdiagnosed as well as the fact the neuro does not do dna’s as he stated because Medicare does not pay for them which was totally wrong. But I feel more confident now that we no longer go to him and my husband being on the trial is at least some hope for us.

You need your rest!!!

L Cala

January 7, 2008 at 11:34 pm

So sorry to hear about the tough time you are having. I know the feeling, as in the last four months, since being dx with cidp, i have been through an emotional roller coaster and continue to be up and down.
I’m on a walker, occas w/c and can stand in one place for less than one minute.
I also on many days can only be in a chair or bed and my husband brings things to me.
I’m making every attempt to stay focused, do what i need to do, do the exercises they have given me to do and to stay positive and hopeful for a remission.
I can understand how hard it is and at times to want to just give up.
Hang in there and will say prayers for you. Hopefully at some point this year will be better.
I had my second round of ivig and it did help my hands and arms for about ten days. I go for my third round of ivig next week.
please we are here at any time for you