Working time

I was a morning person for the first 40 years. Up at dawn. Long hikes in the foothills before I went to school in the morning. That sort of thing. Now mornings suck. I'm weak, nauseated and in pain. I eat a little aroung

10 AM and go back to bed. Up at noon, eat a little, try to do paperwork. Back to bed. By 6 PM I start to come alive. By 7 PM , if I feel at all decent, I'm downright feisty. I go to work. If I'm stong enough, I'll work until 11 or 12 at nite. It's when I do my best work.

I am at my best between noon and six pm.

If only kids didn't have to be picked up from school or eat!

-Kalera

Mothwoman wrote:

{{{{{{{{{{{{{{{{Soozle}}}}}}}}}}}}}}}}}

-Kalera

Dr. Sooz wrote:

It won't be long before they're old enough to not need as much attention. I know it sounds like it will be years and yes it won't be tomorrow but you're young and eventually you'll reach a stage where the biggest problem will be getting them to even acknowledge your existence! I went through it with my two older daughters, they're now 30 and 26 (YOW, how did THAT happen!!!!) and for some time I was at loose ends with no one in the nest. The same is happening now, with my youngest just starting school full time I have a full day of time to do something without being interrupted. Not that I mind interruptions for hugs and cuddles but it makes a huge difference in my day.

Your life will change immeasurably in just a few years, it seems like ages yet but it isn't. Teach them to cook when they're big enough and then have them take turns with dinner. By the time I was 12 I cooked lots of stuff for our family as my older sibs were either gone or 'out' or whatever and my mother worked. I could cut up a chicken and make simple meals with no trouble at all.

-Su

I know you are right... as I type with a squirming and shrieking toddler on my lap, LOL! Juliet is already excited about learning to cook (and make beads), and when I dropped her off at school this morning I watched her walk so confidently up those steps and felt very keenly that I am a character in *her* story, now.

-Kalera

Su/Cutworks wrote:

I hear you sweetie.

Oh hell no. I go back to bed at 5:30. ~~ Sooz To live a creative life, we must lose our fear of being wrong. ~~Joseph Chilton Pearce

On bad days, I go back to bed for a nap after dinner too. It's been months since I had a good day, but I see better times coming. I actually was able to do a couple of hours of yard work this week, when you add it all up. This is very good. I expect the increase in strength to continue. I'm thinking positive. The pain is apparently a permanent resident, but I'm about to embark on another Dr. search. There has to be an answer somewhere. I know that getting off the drugs won't be easy, my body is too accustomed to them. But it will be infinitely easier than living with the daily side-effects.

Pete says of his pain, that as long as he knows his limitations he can find a way to work within them. I feel the same way about the mental input limitations of Depression. Of course, we (all) still work toward a better outcome.

I don't say this to suggest that you should just live with your pain. More like, there is a certain amount of disability (mental, pain, etc) that you can live with very marginally, and a lessened amount that you can function with. I know you have dreams of being pain free. But the people like you and Sooz and Kathy who talk about relief from pain are talking about living with tolerable/manageable pain. It's a foreign concept to most people.

Tina

I have always loved summer nights in the wild. Because you can't see much of what's physically there, your mind is free to fill in with feelings and creations. It's the one thing I miss terribly living here.

Tina

Yes -- I don't think about being pain-free, because I'd just curl up and die! It's too much to ask for. No, don't start in on me you guys......I know you have to reach for the stars, etc. You have to visualize something before you can attain it, and if you set your sights too low, you'll never achieve anything, etc. etc. etc. blah blah blah.......

I've been in various sorts of pain and energy-crisis since I was 19 years old (30 years). I've been in severe pain for 17 years. It's not something you can describe to anyone who hasn't lived it. It's more wearing than anyone can imagine. I'm not whining and crying here -- just describing a limit people don't usually think about -- the griniding down of the psyche. Even when the painkillers and pain-managing agents are doing a really good job, that's just a block -- the pain is still THERE. Your body knows it. It's still grinding, in other words.

For me, the concept of being completely pain-free, even though that would be ideal, would be too cruel to think about, you see? Because it's not really possible. Fibro has no cure at present, and can only go into remission. I'd had it for about 20 years when I was diagnosed -- a very long time -- and once you've had it for a certain amount of years, they really don't give you much hope. I still DO hope, but it's not something I can think about a lot, because....well, I think I explained it sufficiently. ( I think....?) I feel like I'm rambling incoherently! :-o ~~ Sooz To live a creative life, we must lose our fear of being wrong. ~~Joseph Chilton Pearce

You aren't rambling. I know what you are saying. When I went for the nerve & muscle test and the xrays afterwards they got the results and said that nothing showed up. Then they said that my symptoms sound like fibro. The pain gets extreme and I beg for anyone to shoot me. Of course they won't and they refuse. But after the pain gets under control it's the exhaustion that gets me. Sometimes it can take a week of sleeping and lazing to get over a single day of just walking around. (we went to the state fair a week ago tomorrow)

So you aren't rambling.

{{{{{{hugs}}}}}}}

I keep wishing and hoping that they'll find a root cause of Fibro that can be treated... although I have a horrible sinking suspicion that it won't be that simple.

-Kalera

Dr. Sooz wrote:

OH YEAH. I hear that. Went to a street fair yesterday. I thought I was going to throw up after a few blocks, sat down, closed my eyes, went into outer space in my head for a while! Haw! Felt better. Made it through the afternoon....I REALLY wanted to be there, having fun. I'd looked forward to it for 2 years. (We missed the fair last year, sob sob, boo hooing.) It was a perfect day weather-wise, there were good arts and eats and music! Lots of very, very cute doggies with their owners, too, great fun to see. (No, I didn't take Merc....to take care of Merc AND Kevin AND me would be far too much -- I'd die right there.)

It makes me so sad to miss out on things. I'd skipped everything imaginable this year....the ACCI craft fair, lots of social events, you name it. I didn't want to miss this one too. Damn it!

{{{{{{{{{{{{{{{{{{{{{{{{{Debbie}}}}}}}}}}}}}}}}}}}}}}}}}} I'm hoping you get some ways to manage the pain. Or already have them. And that you have a good person for your doctor. ~~ Sooz To live a creative life, we must lose our fear of being wrong. ~~Joseph Chilton Pearce

Kalera sweetie! SMOOCH I think it has a lot to do with environmental poisoning -- all the crap and chemicals and filth that's ruining our beautiful world. And that will be complicated indeed. ~~ Sooz To live a creative life, we must lose our fear of being wrong. ~~Joseph Chilton Pearce

Sooz,

That happened to me too on my last birthday. I planned on going somewhere, even took some meds as a preventative, and I was still knocked on my ass halfway through the afternoon. I went home early, in pain and disgusted with myself that I couldn't even enjoy one whole day out and about; especially on my brithday. I sat on a bench for over an hour because I couldn't even walk to the car until I stored some more energy. Once I came home and rested for a few hours (and took some more meds) I felt a bit better. Pain sucks. :-(

Valerie

And of course, it also fatigues the mind. Slows you to just about a stand still. And many people don't understand that physical pain can wear out your mind as well as psychological pain. And then of course they blame and punish themselves for not thinking more clearly, etc, etc.

Tina

Bingo. My Mom still doesn't understand. It's easier not to answer the phone. lol

There seems to be a consensus that it's a result of a physical injury followed by a psychologically poisonous environment. The injury doesn't have to be to the back, but that seems to be where it usually manifests itself. "Manifests itself", like getting sinus pain when you have injuries that are "in your face".

My son and his wife are splitting up, and she is having back pains right now. I'm getting bells ringing in my head saying "Fibro Alert! Fibro Alert!" She's in Sacrament and I'm far away in Alaska.

Just found out about the back pain. She's a day care worker (so that she/they don't have to pay for childcare, of course), so the back pain is kind of a "normal" thing to happen. But the timing chills me.

Any advice?

Tina