Monday, September 10, 2012

It's Her Party I'll Cry If I Want To

I am shattered, wrecked, in shambles. The word flare doesn't even begin to cover it. See I was given an opportunity to keep up with a few of the more capable members of my family and wound up looking like a colossal loser. A couple ladies joined efforts to throw my mother a birthday party and were kind enough to include me in the roster of hostess'. I suppose they thought they were asking an equal, or even someone simply not as energetic as they are, but instead they got me. However good I thought I was doing, whatever triumph I had over Fibro, any illusion of being able to, just for one night, be the me I was before I became sick me, oh it's over. Crushed into the dust beneath a pair of dangerously high platformed wedges I stupidly thought I could run around in all night. I haven't felt this disabled, incapable or just plain foolish in ages. 

This entire circumstance was slated against me from the word go. Technically I should have declined to participate and just gone as a guest. But it was my mom's birthday party. In my heart of hearts I just couldn't opt out. Hell, I wish I could have thrown her the party all by myself! I really kept my contribution to a manageable level, I thought. And then came the night before the party when I went to three different grocery stores and was up until 3AM rollings beef pigs into Pillsbury blankets. And the morning where I raced around at top speed (another two stores) doing all the last minute things I hadn't done before. Then there was all the work of setting up the party. It took me all of one hour of hanging streamers and blowing up balloons before I passed the point of fibro safety. That razors edge where if you stop everything you are doing right at that very instant and sit for a day you might be okay, able to avoid a flare. No of course I kept going, and four hours later the party started. Barely two hours into the festivities I was lurching around the kitchen like a zombie searching for my dirty cookie sheets in tears. My sensory overload felt like I was at a rave on some horrible psychedelic drug that made you hurt really bad too. I didn't know where I was, what I was doing, what was going on or how to figure any of it out. And because of the darn shoes I had on I couldn't have gotten there even if I did! Thank God for my very understanding husband who got me up and out of there without delay the second I said "I gotta go." 

But I left before pictures, well before cake. Right when things were just getting going. And I was bitter about it, oh you betcha. Mad I couldn't stay, furious at the hell I knew was in store for me, the price I was destined to pay. Upset because I was incapable of contributing my fair share. My family may have been irritated I was lazy, or my paranoia made me feel that way. They may have thought I was dramatizing my situation, or my guilt made me think they did. Does it really matter? Because at the end of the day I simply didn't measure up in a world of people who do. And it makes me never want to be around them again because I feel the gap between their comprehension and my reality just can't be bridged. Some gaps are just too big. Ultimately I must say I am the one who betrayed myself. I allowed the situation to fly completely out of my control. I didn't do what I should have done which is decline to co-host, but I really didn't want to be a bad daughter, either! It's kinda absurd now, with the wonderful vision of hindsight, that I just thought I could give it the ol' college try and the effort required to pull it off would be mine to spare. So here I sit bewildered, confused, gun-shy and traumatized, wondering once again where I fit into a world of healthy expectation. I don't know when I am going to feel human again. All I can say is hopefully in time for my husband's birthday on Friday...

Thanks for joining,
Leah

10 comments:

  1. Bum.....I just wrote a really good coment here and then it didn't save....
    You managed to make me cry...and that takes a lot! I'm crying g for you and your situation....and I'm crying for me and the many situations like the one above that I have subjected myself to. Each time i survive one...i brush the hurt under the carpet...but its all still there building up and every new reminder of my own frailty is like a wind that lifts the edge of the carpet to reveal the old hurts too. I have had m.e. for 20 years and fibromyalgia on top for the past 5....you'd have thought I would have learnt my lesson by now...but no....I'm too stubborn to give in to this illness.

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  2. Bum.....I just wrote a really good coment here and then it didn't save....
    You managed to make me cry...and that takes a lot! I'm crying g for you and your situation....and I'm crying for me and the many situations like the one above that I have subjected myself to. Each time i survive one...i brush the hurt under the carpet...but its all still there building up and every new reminder of my own frailty is like a wind that lifts the edge of the carpet to reveal the old hurts too. I have had m.e. for 20 years and fibromyalgia on top for the past 5....you'd have thought I would have learnt my lesson by now...but no....I'm too stubborn to give in to this illness.

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  3. Leah. the fact that someone like you can give a voice to my feelings never cease to amaze me. The gap between what is expected and what we can actually give is heartbreaking, but everything about the journey we are on is about learning and moving on...You learned that you shouldn't have co-hosted, let that be a lesson and move on...Please don't beat yourself up, please don't because that means that we all have to as well and I don't want to!! I'm done with the paronoia, the fear of what my family is thinking..lazy is definitely a word that I know they often use when talking about me. But, life is too short to waste on regret. I know if must have been so painful to leave before the pictures and cake etc.ut at least you made it to the party! Pat yourself on the back that you gave it your 100%. Good job!!!! I hope you enjoy your husband's birthday. I just returned from a visit to my Dr's personal trainer. I have been trying and just got accepted into a Functional Restoration Program through Workman's Comp. Until I officially begin the program, they set up some weekly 1 hour sessions to "get my body moving again"....I "worked out" gently last week, and had the worst flare ever and I was in bed 4 days. I tried explaining this to the personal trainer today and she looked at me like I just swallowed a can of sardines. She didn't understand Fibro at all!!! She wants me to talk to their Psychologist now...lol... People just don't understand...but that's ok....Life's too short to worry... Hope you are back on your feet soon!!

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  4. My heart goes out to you too. I know what it is like to want to be the old me just one more time. Everytime I think I feel even a little bit good I seem to overdo it and then suffer for it. This just isn't fair. I'm also thankful and very blessed that my husband is wonderful too and will totally understand when I say I need to leave any place too.
    I hope that you can manage to not be too hard on yourself and give yourself a break. We all need to learn and it seems to me that it must be the fibro fog that makes me forget what I am not able to do the same as before.
    Take care
    Gugge1

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  5. Leah, we all do that. We all have days that we think we can be "normal" again. Then we get smacked in the face hard by that wall of brick that stops us dead in our tracks. Then the body says I'm done...stick a fork in me! All you could do is what you did. If these women don't understand, then to hell with them, they are you mom's friends not yours. If your mom understands, then that is the most important thing.
    Now you need to rest and stop blaming yourself for being human.

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  6. This reminds me of all the past holidays ive lost myself to the oh-so-wicked fibro monster. I now just attend parties with my imaginary balloon. I hold the string and smile up at the 'old me' floating inside the plump pink latex (gotta be pink!) she's a party animal and i pass her an imaginary dirty martini while i get a bottle of water and start to yawn....

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  7. Oh Leah, I so understand - I often feel the very same way. I so over did it the last five days and I am in full flare today, sitting here like a zombie surfing and trying not to moan to loudly every time I move. You have such a way with words that express what we all feel, but often can't put into words. thank you for sharing with all of us.

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  8. Leah, this really hit home with me. This past year our family had an abundance of milestones.Since I knew what was coming, I committed only to two things to celebrate but it didn't seem to phase me until too late that these events would occur two weeks apart. My son graduated from high school at the end of May & then we had a suprise 50th Anniversary party for my parents. Planning for both of these started in March as my husband was getting over a blood clot that covered his whole right lung. With the help of my kids we pulled off both parties without a hitch. My sister left the anniversary party pretty much up to me so my kids & husband stepped in. (Thank God they're teenagers & can do pretty much! ) As my son & I were running an errand today I told him I finally feel like things are getting back to my "normal" (as in fibro normal). He said, " Gee, Mom. It took you 3 months to recover from throwing 2 parties. Why didn't you just skip mine & only have Mom-mom & Pop-pop's? I'm glad for you that all of the milestones for this year are over." Sometimes I wonder myself after all is said & done why I push like I do. Then my soon to be 19yr old son says something like that & it hits me right in the face. I would endure anything for him & his sister, but the rest of the world is now on their own.

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  9. Oh! Do I so understand the desire to be "normal"! I am finding that I am now healed enough, three years after taking a disability retirement, to be "fully functional" for about 3 to 4 hours a day. After that, my mind shuts off and my body lets me know where I over did things.
    Sometimes I think we push for a normal day just to remind ourselves we are not like the rest of the world. Kinda like every decade or so you have to get shitfaced drunk to remember why you don't do that anymore either.
    God knows, I WANT to be a productive member of society, but I simply am not able to meet society's expectations. Bummer. ;-)

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  10. I live in pennsylvania and was denied SSD....because i have eight years of college education. i finally got up enouvh nerve to apply and then be denied. i hate my illness(es). No one truely understands...not even my husband or my family at the very least. all i want to do is be "normal - pain free - positive - someone who doesnt cry all the time." I hate myself right now and i have no idea what to do.

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