Ever Want To Stay In Bed and Cry?
 

That's what I feel like doing. The Dr. said I am free to skip and jump (relatively speaking)

Ever get the feeling like you are broken and to be ignored now? I had a good sample last night when my daughter came in to talk about what new job to accept. She, My wife, Son, Son-in law all talked among themselves. I sat on the sidelines and even when I tried to participate it seemed my participation was ignored.

I haven't fenced since nationals where I "stunk out loud" and didn't make the team going to the World Championships in Paris next month. I am fencing in a tournament at the end of the month and fortunately my coach brought the frame out and I have had lessons the past three weeks.

I am just going to snap soon.

Sorry you are feeling so low :hug: it is a long process - anywhere up to two years since nerve fibres grow so slowly.

You don't want me to say be patient, but it will happen....slowly.

Lyn

Ever want to stay in bed and just cry??
 

Why yes, yes I do!!

Though our "brain" health issues are different, I know exactly what you are talking about. I have Chiari 1 malformation and in 2004, had craniotomy, duraplasty and laminectomy of c1 to take the pressure off my brainstem and spinal cord. Ever since, I have had worsening symptoms of severe hormonal imbalance: hypothyroid, adrenal insufficiency, premature menopause symptoms. And as you can probably suspect, a good healthy dose of depression, anxiety, and chronic debilitating fatigue. I finally found a nurse practioner who is beginning to help me treat my hormone imbalances. And interestingly, it appears to be a pituitary issue likely related either to the Chiari or to the trauma associated with the surgery.

And I do just stay in bed and cry on those days.... but I only allow myself 30 minutes of pity party and then I get up and do something, then I usually wind up back in bed but at least I got up.. I found that on those days when I feel so low, I haven't been listening to my body and am very run down. I push my body way toooo hard and then pay for it later.

My family tries to be supportive, but more than once, my husband has remarked about how much better I look, when I feel like I am about to crumble in a heap on the floor. They try, but until a person experiences what its like to have "brain surgery" and the recovery, they can not begin to understand what it is like.

I am sorry you are struggling, but just remember there are others out here who do get it, and stay strong because it will get better.

Wow chiarichic! It sounds like you have had a terrible time of it. 'Oh...but you look so GOOD..' is the most hated catch-cry of the MS sufferers and also the aneurysm survivors - sounds like it might be for you as well. We take care of ourselves and the way we present to the world, we keep smiling when all is going to sh#t, and work so hard to be 'normal'. Why? Because as you said, unless you have had the things we have, you have no idea what it is like. I have MS, and I had a craniotomy to clip an aneurysm in 2004. The thing is, people don't know how to react to things they do not understand, and so they try to say something nice...you can't blame them, because they just don't know.

I totally get where you are both coming from. That is why a forum like this is so good. We do get it.

Lyn