Fibromyalgia Support Group

I woke up in such a good mood. Sure I hurt (I never stop that), but today I have energy. Blessed energy that is so precious in my world. However I am no newbie to this game – I know it can be fleeting so I decide to take it slow. I get up get a drink and sit down to rest. When my husband gets up I cook breakfast (something I don’t get to do a lot anymore). Then we sit again and eat and rest. I am being good I am taking it slow. Now for a shower and a quick trip to Walmart to pick up 1 or 2 things….

However in the car I am starting to feel tired. I ignore it – no it can’t come now – I am having a good day for once! We grab a few things and head to the register. As I am standing there I feel it – that all encompassing exhaustion – sweep over me. I hurt 10x more and am 10x more tired! With it comes the devastation I feel when I realize my day is done and it’s only 10am in the morning!

We go to the car and I snap a few times at my husband. Not because he is doing anything wrong but because I am angry. We get in the car and I look out the window with silent tears streaming down my face. My husband’s worry is palpable in the car. I know he’s worried because I am not talking. I know it seems like I am just sad…but in my head there is a whole scene playing out.

I am screaming – I am stomping my feet and SCREAMING obscenities. This is not (bleep) fair. This (bleep) sucks. I am so (bleeping) tired of not being able to do the stuff I need and WANT to do. This is the most suck*&# disease ever. I don’t have a disease people can see or the type of illness people bring you food to feel better. I have this dumb&%# disease that no one can see and usually understand. WHY GOD – what the hell did I do to deserve this?!?!?! (Bleep) this! I am so (bleeping) SICK of this! and on and on it went as silent tears streamed down my face.

Why didn’t I do this – because in real life if I did this it would be just one more thing that zaps energy I don’t have. Crying and getting mad just takes more from me. So I do it silently hoping that this mental tantrum I am having won’t take too much energy out of me today because everything and I mean everything I do takes something from me. Sometimes it’s energy, sometimes it takes something from me emotionally and sometimes it just takes everything.

So today I will sit and look out the window and sit in a quite rage – because that is all this disease will allow me.

I can relate with this on so many levels. We try to go somewhere to take care of things then I am flooded with exhaustion, it makes me so angry especially since I felt okay when we left. It makes me so friggin angry and sad at the same time. Now I have my mom calling my ailments drama, wtf, would I be on disability if there were nothing wrong with me? I told her I would never bring another ailment up to her since she told me she was too old for drama, so I could be in the hospital dying and I won't tell her because in her mind it would be drama.

Chronicmama- I read your story and truly felt your pain, yours too csc. I know th efeeling of wanting to be normal, and have the same level of energy other people do. we want to be back in that place where we dont have to think every minute about the plans we make or the moves we take, always pacing and pacing. Then others dont see us as how we really are or feel inside.

I am seven months into this. I did so much crying at first. I felt so hopeless. NO ONe can tell name for sure how long this will last, or will be forever? The pain has subsided, yes, and I look great yes. But damn, I'm still on a heavy patch narcotic, cymbalta, anti-depressant to sleep and I still feel pain! I still have to lay down after cleaning the bathroom, or go to the store.

My Rheumy told me I looked great yesterday. That was good news. But I dont feel great. : (

I supposed we can put it all in prospective and look at other folks who have so many other challenges, and feel grateful it isn't worse.

I don't know. I'm an amateur at this. I'm still holding out hope that they got it wrong and I will be myself in a year. To me, it's a feeling that hangs over me like a dark cloud. Every once in a while the clouds break and there is a ray of hope.

I totally understand how you feel. I compare myself to a GPS - I am always recalculating what I may or may not get done in a day. Try tp put your feelings of anger aside and do something simple that you enjoy. It is not productive to sit and stew over something that you can't change. I hope you find some peace in your life at some point today. Take care.

This is so sad, but unfortunately so true for most of us. I know exactly what you mean. I can remember doing that same thing on the way to church one sunday, and it all started with hubby discussing my fibro with me! He was trying to throw out suggestions that would "fix me" and was trying to understand it a bit more.

I got so frustrated with trying to even talk about it and explain, that I just sat there crying. It was horrible. Everything requires such effort. I need to go to the store, but so far all I've managed is to take a shower. Now I'm resting to go fix my hair! It stinks!

At least we're all here for each other.

Hugs, All....Liz

chronicmama,

Thank you for your beautiful post and expressing yourself so wonderfully.

I feel the same way. It does suck!

Hang in there and just know that you are not alone.

Post edited by: angelonearth, at: 04/21/2012 10:54 AM

I read this and say yep i understand.. yes even superwoman has her days... i have done this silient rage crying in the car.. screaming in my head...because you dont want to use your very little energy you havae left... understand that... and when that hit it i nap time i dont care if it only been a n hour sice i have gotten up and the coffee is just finished brewing.... it is what it is.... and it sucks.. and i push thru it most days. and hope that i dont flare myslef....sometimes i do sometimes i get lucky.... but it al comes back to the silent rage with the streaming tears ad the cursing in the head or outloud if i am home lol... hope you feel better .. and be proud of What YOU did do today... even if it is only getting up and making breakfast and going to walmart.. you did something.. be proud...take a nap and try again.. hugs and love.. hugs some more !

Today I got up as usual (4:40 am) fed my cat/dog. Made breakfast for hubby (he is off to work) but prior to this we talk a little. For the past few weeks he has been awful towards me. We aren't hurting financially since he is working full time, I work 2 part time jobs (Mon-Frid.) and have alot of driving to do with both jobs. He works 10 mins from the house.

I am not a talkative person if I don't have something important to say or need him to hear a rant of mine, but I make that quick so that I don't loose his interest. Plus too much complaining gets me upset and drained.

Well hubby knows that if he wants to see me mad he will act as if I am not making sense when holding a conversation with him. Last night it was my on line banking and I did not understand a withdrawal from "MY" credit card. Well when I showed him where I thought there was a mistake, he went off the handle. And the more I tried to explain how I was understanding the supposedly error was, the more he refused to let me talk. DO NOT STOP me from having a say. I am a good listener, so give me a chance to talk too! For crying out loud why must he be an AASSSSS !!!!!

And yet he knows how stress makes me sick. Its all due to my working part time and not making alot of money as he makes. I can not help it if this stinking economy and my ability to work more is against us all!!!

So I must carry on as if nothing is really bothering me. NOPE, last night I finally slammed down a dish of "his" and he got mad. Great I finally got a reaction out of him, since for the most part he acts as if I am not around.

Oh, enough out of me. I have been out in the front and back yard today pulling weeds and walking, so I am now tired. ANd need a nap LOL

cscwem - sorry your mom feels it is drama. I truly feel it's easier for people to say that rather than face the fact that their relative (daughter) is suffering. Just as long as YOU remember it's not drama - it's real and like Liz (livingwithhope) said - we are all here for each other!

Oroman - I am sorry about your husband and your relationship. I wish I had some words of wisdom but I do not have to go through that now so it would be wrong of me to say I understand. However I can say that I HAVE been through this many many years ago with my husband and it's a vicious cycle. Somehow you both have to find a way back to each other and please know I do not say that lightly. It's hard and it's work but it's worth it in the end. Try writing to your husband about what is going on - maybe email him or a letter. Maybe it would help if he knew how you felt since you are not a talkative person. I hope things resolve for you soon so that this will be one less stress in your life!

To the rest - thank you for your support and kind words. I stayed on the couch and rested with my loving husband. I helped fold a few clothes (while sitting down) and wrote a blog. I also started making my own perfume - and today was my first attempt - I want to find something I can do that doesn't take a lot of energy and is fun. Plus with my celiac it's hard to find gluten free perfumes so I decided to make my own! So yes I did find joy in my day - I just had to stop stomping my feet over something that is now my life and figure out what I COULD do.

However thank you for letting me vent. That is so helpful to me to know i have kind people in my life that I can be honest with.

God bless everyone and have a good day!

Oroman, he needs a kick in the butt.

Yeah, the rage bubbles up. I try to turn it into cleaning. Usually I am too weary to clean after working or whatever, but sometimes I get so...angry...at how things have panned out that I grab a dustcloth or a swiffthing or whatever and clean, snarling and cussing. Fibro is a Disruptor of the pattern of my life.