Saturday, April 16, 2011

Loss And Regret

My dear readers and friends, I write to you today with tears streaming down my face. The day started out with an "I hate Fibro" tune to it and it just pushed me into the worst LMA of my life! See I am really mad today. I am so sick of being sick. Of making concessions for this stupid illness and what it has done to my life. Of the excuses and allowances that have to be made. Of the sheer loss of opportunity in life. Shifting from a life of purpose to a life of necessity. This really sucks and I don't want it anymore! I want to give it away, take it to a place where it can be buried in the landfill that has consumed my life. I just fell majorly prey to a stupid accident involving the broken bar on the inside door of the refrigerator and a spilled carton of yogurt. And it pushed me to the edge. An edge I had been teetering on for the last 2 flare days but had managed to avoid. But having my husband home on the weekend and watching, with no filter, how much life really sucks for both of us because of this illness fills me with rage. I DON'T WANT TO DO THIS ANYMORE! 

I want my life back! I want choices. I want to feel pretty again. I don't want to take 15 pills a day just to be able to get out of bed. I want friends. People used to be in such abundance, it was never a question of if we were going out on Friday and Saturday night, just a matter of where and with whom. I want to walk my dogs and do yoga without winding up in a total flare, barely able to function after only 3 days of activity. See I am still off my axis. Bumping into every little thing. Spilling it or dropping it if it can be spilled or dropped. Getting my ankle twisted up in the sheets and wrenching it, for goodness sakes! Sometimes the true impact of all that I have really lost smacks me upside the head. Right now is sometimes. And it hurts, is ugly, so unfair and makes me cry and wallow and feel sorry for myself. But that can only last for so long...

Eventually I will calm down and focus. Relax my insistence to control my life. It is the hardest impulse to ignore, I was such a control freak my entire life. Everything was as close to the way I wanted it and could still get away with. But then I catch a glance of that tattoo on my arm, the prayers I chanted night and day when the fear of death was sitting on my chest in that hospital bed, laughing with its Hinayana head and Gargoyle body. Drooling and dreaming of snatching me up. I prayed to God that I would be comforted from the sheer terror. And I was. I continued to pray, and I was always comforted. Somehow I made it through the treatment and am still having to run back to that comfort. Life is much harder with Fibromyalgia after the strokes. I took significant loss in the "managed" department. Its like I am starting at baseline again. So today I am angry and bitter. Well actually just this morning. After getting all this off my chest I feel better. I still feel loss and regret, but just may feel up to looking for  my friend positivity soon. She is much easier to find when I am not standing in the middle of the kitchen, crying, my feet and half the floor covered in yogurt with condiment bottles rolling in and out of it all around me.

Thanks for joining,
Leah

10 comments:

  1. Leah its Erica I just wanna say you are NOT NOT NOT ALONE WE ALL HAVE OUR MOMENTS AND YOU KNOW WHAT YOU HAVE FRIENDS ACTUALLY NIX THAT YOU HAVE FAMILY HERE THAT LOVE YOU AND DONT CARE WHAT YOU LOOK LIKE ON THE OUTSIDE WE LOOK AT THE BEAUTIFUL WOMAN YOU ALWAYS HAVE BEEN AND STILL ARE ON THE INSIDE!!! WE DONT CARE IF WE DONT TALK TO YOU EVERY DAY OR SEE YOU ECT... WE ARE JUST HAPPY YOU ARE A PART OF OUR LIVES !!! YOUR FRIENDSHIP/LOVE HAVE MEANT TO MUCH TO SO MANY OF US !!! WE SHOULD BE AND ARE HERE FOR ONE ANOTHER WHEN YOU/WE NEED !!! <3

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  2. I'm here with you, the last few months have kicked my butt. And I can completely relate to wanting to kick the meds and live without again. And being able to do that which my mind is eager to do. But the biggest thing is to actually be able to think through the fog. Bleh. The only thing that seems to get me through is a snarky sense of humor, but it is in short supply as of late. Just know you are not alone, and many people are standing behind you for you to fall back on, even if you don't "know" them. Sending you gentle hugs and lots of love and support!!
    Michelle

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  3. This blog is helping me so much to understand more about an illness that even the doctors really know nothing about. Leah, stay strong, I have the fight everyday to get out of bed ~ and knowing I am not alone has helped me alot.

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  4. Sounds like my lovely day of bursting into tears on the way to physical therapy yesterday, only to have Aaron turn the car around when I couldn't make the simple decision to just not go. Sometimes the intensity, the realness of being so damn sick is too much. It's startling in it's freshness, as if it needs to be re-learned every single time amethyst hits and hits fricking hard. Thank you for not only getting IT, but for being brave enough to be honest about it. Love ya Leah.

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  5. I love you and understand what you are saying. I have even had a meltdown with the refrigerator door open. I had been cleaning up a mess when I discovered my knees had locked in the squatting position---severe pain and I could not get up. I yelled for my husband who was deep in reading some adventure novel and did not want reality interfering. I had to yell several times. I finally gave up and threw myself sideways to the floor. Even more pain. Had to stay on the floor and wait for the pain to subside before I could get up. Back to bed. This is a while back and even seems a bit funny now but was so discouraging at the time. Life moves on and there are intense moments and frustratingly boring moments to our illness. Still I live in hope that the medical community will get serious and find us some real help soon. Love to all my Fibro Friends. We deserve time to be angry and time to celebrate the victory of survival. Marilyn B.

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  6. Leah, I totally get it. I have had those days of dropping things, losing my balance, spilling things or splashing drinks of tea all over the floor because my balance went kaput and I was shaking so hard from spasms in my arms and my hands shaking so bad that I could not grip my glass. Causing me to be going totally in slow motion and suddenly dealing with an uncontrollably crying grown woman ,that use to have it all together to one who doesn't have it all together anymore. I am angry at myself that I don't have control of my life anymore and that fibro has robbed me of my family who refuse to believe I have this horrible illness. I never left them. I am still here. Always.. I'm trying to survive this pain.I thought I had support but found out I am still all alone in this. Without you and your blogs and this wonderful group I could not get through each day. I do have 2 people in my life that get it but the one who I counted on most, that I thought would never, ever turn their back on me, turned their head and left me to linger in silence and shock, my heart pounding rapidly as I cried so hard, trying to understand what just happened. When I can find that one moment my eyes will shut and wondering why do I have to constantly explain myself. I have done nothing wrong and was told I choose this life and have let this pain and pills be my lifestyle because I like being high every day. Some days I cant get up out of bed or even be able to get dressed , do simple housework because I am in so much pain. No one can be in this much pain they say.. HAH!! I want them to live one day as we all do, live for that time you cant move your legs, cant move your head, your nausea, stomach pains, headaches, double visions, fibro fog, etc, etc, the list goes on and we all know it, dont we, Leah! I thought they understood but I was wrong as I found out today. My worst heartache I thought would never enter my life has reared its ugly head as DISBELIEF that I am actually in this much pain. No one can be in this much pain as I was told unless you let it control you. and if I am in this much pain. stay home and don't bother coming around because they want 100% of me being there..my tears still flow from the hurting comments made by someone so close and whom I love with all my heart. I'm very angry at them. I didn't want fibro. I didn't ask for fibro. IT controls my every waking moment. If I stumble, then it's my fault because I was too high on pain pills to maintain balance. Yeah right..Deal with it.. Get over it.. I have fibro and I am so damned tired of explaining myself. LMA I say to them. Only through my medication is how I can survive another day, making it manageable to get through each day. People you love can be so hurtful. and they think they are doing you justice by telling you that you are choosing this lifestyle. I didn't choose fibro. It chose me! And I hate how it has robbed me of normalcy in my life..I thought I was a survivor but was told I'm just choosing to live this life in misery as a choice. Did I suddenly get lost in the shuffle? Did I ask you to baby me? No I didnt..All I ever asked was you to understand what I go through each day. I'm sick of being sick every damned day of my life. Leah, thank you so much for your blogs. It helps me deal with my worst days and when I get one good day in a month or it might be a day in two months, I cherish them all. I am glad I am not alone in this and we all share this together. Thank you again Leah. Stay strong hon. We deserve the right to be angry any damned time we want to.

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  7. So today's the day I finally write to you and tell you how important you are and what a difference you are making. I have been reading your blog for about 2 months, having been diagnosed with fibro recently. I have checked out several blogs, but I enjoy yours the most. I enjoy your honesty, your knowledge, and your attitude. You can feel bad.... we all need to sometimes.... but when you're ready to accept this, please know ~ YOU are making a difference in the lives of others simply by sharing what you are going through. It may not be much, certainly not enough to make this "sick" life okay, but it is something! You matter and what you go through matters, to people like me who don't even know you. So.... cry and get mad and do what you need to do.... but then, come back and share some more. I would miss you if you stopped! Thank you for your help, and God bless you!

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  8. We all have our weak moments. I think your blog is a testament to your determination and willingness to "thrive" despite your illness. But I have days like that too.... I hate my illness days. Just remember there is always light and joy awaiting us if we're patient.

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  9. I have just found your blog, and I'm glad I did. I really need to hear from someone else going through the same things as I, although with your stroke, you are going through far worse. I must say, though, I would rather see you angry at Fibro than just giving up. Anger at least gives you fire, but not the finality that throwing up your hands and crawling into bed for a week and missing out on 7 days of your life that you can NEVER get back! I don't know if this would help for you, but when I start getting really down I try to think of people who are worse off than I, especially if I know them or read about it in the news. At least Fibro isn't terminal.
    I started looking for additional support because a few days ago I learned that my mom, who I thought was one of my few supports, really doesn't understand Fibro/Chronic fatigue and really doesn't get me. She wrote something on her Facebook page stating that "pain is inevitable, suffering is optional. Suffering is the contraction of the mind, and unlike pain, is optional. Don't add suffering to pain, relax your mind, and the suffering will pass. As long as you have a body, some pain will be inevitable." So, I replied to her-"tell that to someone who is feeling phantom pain long after losing a limb to amputation, or someone who has had Fibro for 10 years, sunshine." Now she thinks I am disrespecting her. In public, in front of her little facebook friends. I guess that is what it all boils down to for her; looking good to her friends. My 38 year old sister just had a baby, her 2nd, and had an epidural yet I had all 6 of mine, 2 with Fibro, without any pain meds.......hmmmmmmm. Yet I am the black sheep. And I went out of my way the other day to bring my mom some antidepressants because she ran out and wasn't feeling so hot. I pointed this out, and told her that next time, she can just relax her mind, because I won't do her that favour again. Am I being overly touchy?

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