running on empty

i need to seriously evaluate how to do the following things:

1)  eliminate some of my responsibilities

2)  explain to a handful of people that even though i look 'ok', i am not.

3)  rest

i feel like i never every stop running around ...  it feels like i have so many obligations.  and it's not like stuff that i can get out of!  my sons have tutoring, practice and rehearsal schedules for school.  they NEED those opportunities.  i am taking a class that is a lot of work, but i have made it for 11 out of 14 months, and am so close to the end.  i paid a lot of money to take it, and was WELL when i signed up.  i have let go of expectations for housework, and i have delegated as much as i can, but i am in so much pain and so tired all the time ... and i just don't know what else i can let go of. 

i think that i am STILL struggling with accepting the FM diagnosis.  i am one of those "i can do it' kind of chicks who just pushes along and acts like everything is fine and doesn't like to let on that i am miserable ...  and i have done it for so long.  it's not like i just was diagnosed ... it's been over 3 years.  but i haven't had a flare like THIS in ages ... and it is really kicking my butt.  and when i DO tell someone what's going on, i get that "oh, i didn't think fibromyalgia was a real thing" kind of looks.  that makes me crazy!  partly because obviously SOMETHING REAL is going on with my body ... and also because i was one of those people for so long.  i just denied and denied and tried to believe that that was a 'wastebasket diagnosis' for when dr's didn't know what else to say.  i realize NOW that all of that was because I didn't WANT to believe ... it wasn't that i denied people had real pain ... i just was too bullheaded to accept that they were going to give me a 'label' with no real options for treatment.  i wanted the 'real reason' for my pain ... so we could 'fix it'.  now i am in a different place ... forced to accept it ... which means that i need to explain some things to a hand full of people ... and it's so hard to do.  it's SO HARD for me to say "Hey, I just can't do this right now.  I am in a lot of pain, and very tired, and have to reserve my energy for my family and myself."  people are used to me being the woman who can accomplish everything on her list.  i am not ok with changing that to the 'weak, fussy one who doesn't get anything done and doesn't even remember important things that we have on the schedule'. 

if i don't start to get better sleep, i may lose my mind along with my (formerly) healthy body.  4 hours a night is killing me. 

i can not wait to get to the dr's office on thursday.  i need help.  maybe he'll write me a big note to pin to my shirt that says "This woman is honestly not well right now.  Be gentle with her.  Be supportive of her.  Know that she is NOT looking for sympathy, but she does need you to understand that she has to SLOW DOWN.  dr's orders!"

Do-over your post sounds familiar. I was the "doer" that everyone turned to, a perfectionist and thought I could do it all. At some point we all have to accept this new life with fibro and it's not an easy pill to swallow. I've had this long enough to know my limits and what I have to do to make life easier. It takes me twice as long to do anything as it use to so I have to plan a lot more. I'm thankful I don't have children to taxi around anymore. Maybe it's the age but there is no pushing my body, when it is done for the day it is done.

 

Fibro is something no one can understand unless you live it like we do. I would have never understood this before I got it. The only thing we can do is let those in our lives read things like the "spoon theory" and say, "I know you don't understand but this is the way it is".

 

luv and hugs

Marlee

Well...I am going through the miserable process of telling three life long friends that I cannot drive, or have my husband drive me  to the coast of NC for a BFF reunion.  When we all lived close to each other, we would use one of my friends time share and get together for two weeks every year.  This is a 16 hour drive, in February, through the mountains.  In blizzards.  They have all but called me a woos and mentioned all the disorders they have and it's not stopping them.  Fibromyalgia?  One of them wears two wrist thingys for carpal tunnel and a brace on her leg from a skiing accident.  One is in a wheel chair from morbid obesity and the desinigration of her knees.  The other one has some kind of back injury and is in screaming pain yet continues to run 10 k marathons.  So of course when I tell them I cannot sit in a car for that long...that's it's too painful...they don't get it, accept it and still, after many conversations where I explain that I can't do it anymore...they are persistant.  We are all in our sixties.  Other things besides fibro plague me at this point in my life.

One of them called me last night, said she would drive from Cinncinati (10 hours from me) dope me up with Valium and drive me there, then return me home.  It is so thoughful and generous.  Yet the thought of it gives me diarrhea.

No body that doesn't have this, get it.  Nobody.  I give up trying to explain it.  Furthermore, I am sick to death of people trying to put this disorder in perseptive.  Someone out there always have something worse and fatal.  I know that, for Pete's sake.  But somehow, hearing this does not diminish my pain.  'Be thankful I don't have ALS." is my favorite. Yes...I am very thankful.

The end.

Donna 

Donna, if your friend had "screaming" back pain, trust me, they wouldn't be running a marathon.  They SAY they have screaming back pain but I sure don't think they do.  YOU know what real pain is all about and there is no way you could run a marathon.  If they had your type of pain, they would totally understand, too.  I think you might have some "creative thinkers" in your group of friends.

I lost a friend of 32 years last year over fibromyalgia.  That's alright with me, too.  I don't owe anyone an explanation as to how I want and NEED to live my life.  I do what I have to do and then set the rest aside until I can get to it.  We just have to make quality decisions in our lives.  Look at the things you know you need to do and get them done...like helping your children participate in activities.  That is a biggie!  Finishing your course is another biggie.  The rest will be there when you can get around to it.  Your children are probably old enough to be quite capable of running a vacuum and dusting and helping set the table and cleaning up the dinner dishes.  You don't have to be an adult to do that.  You are giving of yourself to get them to their activities so they can give you a helping hand.

I hope this helps and I hope that your flare ends soon.

Sherrine

Accepting the changes in our lives with fibromyalgia is a hard thing, and adapting to it is even harder.  But it can be done. 

Deligate chores to your children.  Make time for yourself, even if it is just 30 minutes a day, it is worth it.  Do something that you enjoy, or just relax.

Forget about trying to explain to others what is wrong and the pain that you are in.  If they are really your friends, they will try to understand.  But I do understand why they would want you there with them.  It is probably a fun time with you there.  But if you can't make it, you just can't and that is all that there is to it.  Too bad it isn't closer to you so that you could go.  Sounds like a fun time.

I hope that you feel better soon.  Take care of you.  Best wishes,

Hugs, Karen

thank you all so much for the kind and encouraging words. they all feel like the best kind of hugs ... the kind that doesn't hurt .... and i'm sure you all know what i mean when i say that.

my boss called me into her office yesterday. she told me that a mutual friend had talked to her about how much pain i have been in, and how worn out i am, and asked her to keep en eye on me. i was shocked. she was being sympathetic and kind .. not in any way fussing at me. she was concerned and wanted to offer to support me in any way that she could. of course, the stupid autopilot in me was so surprised that i said, "Oh, this fibromyalgia thing is wearing me out now, but I'm ok ... I hurt everywhere, and themigraines make it really hard to be here, but the toughest thing right now is that my family has still not adjusted to my working full time and I miss my kids." (In the back of my brain a little voice was going "HELLO!!! TELL HER TELL HER TELL HER THAT WORK IS KILLING YOU AND THIS IT THE MOST STRESSED OUT YOU HAVE EVER BEEN IN YOUR LIFE AND IT TAKES YOU 30 MINUTES TO GET OUT OF BED AND YOU CRY ALL THE TIME!!!!") I assured her that I was ok, just sore adn tired, and trying to get it all together, and then started talking about the progress that the children were making and how much i love them .... and that I couldn't think of anything that I needed from her.

i left that office wondering what in the world is wrong with me. I think I need to give it all some thought, and go back to her this week ... maybe after my appointment tomorrow morning. I need to just tell her that I'm not used to asking for help, and don't even know what kind of help I need right now, but that I'm not all that "ok" and that I appreciate her concern.

I wish there was a way I could REALLY thank all of you enough ... I can't tell you how much your replies and support mean to me. For the FIRST TIME I feel like someone 'gets it'. For the first time, I feel like there is someone who doesn't think I'm just being lazy, or 'just depressed' (as if depression isn't bad enough!!!). I was raised in a family of hard workers who never let anyone see us struggle ... and the fact that I AM struggling is as painful to me as the physical pain. The fact that it's so invisible and no one understands makes it a hundred times worse.

This forum is my haven though .... and you are all so kind and understanding and wise. I guess one of the silver linings on this grey FM could is that once you've walked down the road a bit, you can hold someone else's hand and help them find their way. and YOU GUYS are the type of angels who understand when instead of running down the path, I just need someone to sit with me, let me rest, and not be alone.

thanks again ... many many times!
D