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For a long time, I have had issues with flaring at night which is bad enough but the weird thing is this:sometimes, I have had a decent day and then when I lie down to sleep- suddenly I flare and then it is hours before I can sleep. I am getting to the point where night is an absolute terror for me because I don't know what to expect. When I was having my good spell recently, I did not have this and went to sleep so easily and peacefully. I am afraid to take my dose today and afraid not to. Does anyone else have this happen and why??? I understand that night is worse in general but why so sudden when I lie down?
Also- I am having a hard time
Also- I am having a hard time remaining calm when this happens right now. Any ideas about that. WHen it is goin gon, I am too tired to get up and read or do anything but in too much painto sleep. Basically, I pray and try to breathe but I find that panic is really getting worse many nights
Hi Deir! I am so sorry you
Hi Deir! I am so sorry you are having such a rough time again! :( I do get my worst flares at night too, or at least seems to be the case. For me I don't know if it because I do so well distracting myself with work all day that as soon as I lay down to sleep the urge to pee gets much worse and when I wake from pain it seems to be 10 fold. Maybe because I don't feel the pain building it just hits me like a bolt of lightening! Keep communicating your fears and symptoms with Dr. M. You are getting there, just like everyone says it is 1 step forward and 2 steps back, but one day soon you will keep taking the those steps forward and will never have to look back! Hugs!
I wonder if it is the
I wonder if it is the distraction thing with me too. Last night i finally fell asleep and my neighbor's dog woke me at 12:15. I put on my shoes and walked over to their house!! This is the second time in a row. The night before the dog was barking for a half hour at 11:30. Nobody could understand how awful it is to have finally fallen asleep with IC, only to awakened by a dog and have to go through the process again. Then my son came in at 2:30. I barely slept at all last night.
Thanks again for your support as usual. I am feeling so down. I kind of am about to eat some vanilla ice cream or at least a green apple! LOL I did not email Dr B today since it is Sunday but i will tomorrow.
Definely 2 steps back right now- something has to change.
Hope you are hanging in there!!
Hi Deir
Hi Deir
i just wanted to let you know you are not alone with this.
I totally understand how horrible it is and I have been - many - times - too scared to lie down to go to bed because the exact same thjng happens. It's up and down for me and comes and goes - and I really know how awful it is.
The last time it happened was right before my birthday a few weeks back and I was exhausted and felt so horrible on my birthday. I cried a lot !
I sometimes try reading and distracting myself sitting up or do my nightime meditation CD and wait until I get very sleepy - sometes after I ve emptied my bladder a few hundred times !!! - but I find I sometimes have more chance of dropping off sitting up.
Ice also helps me - Dr M knows I use this - I just don't like Heat and ice does calm my pain down at times.
I have no clear idea why the act of lying down provokes such pain etc. I'm actually amazed that you have it too - I have been puzzling over it as it makes no sense, especially as, like you, I have an ok day and bang - as soon as I lie down I have awful pain and need to pee over and over.
I thought it was just me !! I'm sorry you are going through this - I ve been treating just over three years as well and feel I should at least be able to slerp a bit !!!
Sending a big hug to you. (Have you tried ear plugs ?!! )
xx
Wow- That is amazing that you
Wow- That is amazing that you have such a similiar experience. it is really maddening. I should do ear plugs because of the darn dogs- now that it is Spring and the windows are open!
Thanks!!
So sorry Deir. I can't live
So sorry Deir. I can't live without my earplugs!! I change them frequently so they work really well
If we don't excel at health, the only other option is disease.
I do have a smal white noise
I do have a smal white noise machine that really helps but not much can block the little Shnauzer next door! LOL