Sunday, December 21, 2014

My First Sick Christmas

So I’m strolling through Instagram last night, and come across a very young woman who is disabled with ME/CFS. She’s popular, a couple thousand people follow her, and quite open about her struggles with this illness. She got sick after catching a “flu” virus. A year later she isn’t better. I stopped trolling for likes on my juicing post, and immediately started sobbing from the depths of my soul. I know her plight so well I want to scream into the loudest microphone in the world! CFS is what first got me sick. Fibromyalgia wasn’t my initial diagnosis. Chronic Fatigue Syndrome was. And just typing the words makes me wail like a wounded baby. Because if I knew then, nine years ago in my twenties, what I know now, a battered and broken warrior in my late thirties, OH MY GOD, what could I have done to salvage my lost life?????!!!!!! Is there anything I could have done to make the last nine years not happen? Is there anything I could tell this girl, who is so upset to be looking at her first Christmas tree after a year of being sick? Anything I could do to aid her plight or lessen her burden or make it last less than a lifetime?

No, there isn’t. Because I don’t know much more now, than I did then, about this disease. Christmas 2006 was my first disabled holiday. I was still living in San Francisco. My family came to visit. I knew I couldn’t cook, I couldn’t even hold a knife to chop, I was buried in so much fatigue and pain. And I don’t mean tired or overworked or exhausted. I’m talking, “if I have to stand here for twelve more seconds I will cease to exist, that’s how weak I am,” kind of fatigued. So I ordered takeout and set the table. Except I couldn’t do that. I mean I could, if my husband picked up the food, and after each piece of silverware I placed, I rested for twenty minutes. But when my family actually arrived, all that ‘setting the table’ business left me without enough strength to even open a bottle of wine. Literally. How do you explain that? How do you get them to believe you, to understand how serious it is, to recognize the world is threatening to swallow you whole, from simply being unable to exert the energy required to set the table and open a bottle of wine?

Clearly I don’t know how. I’m a failed experiment. My personal relationships are in shambles. Literally every single person I know is either completely disappointed in me, or has given up entirely. My family is still waiting around for me to contribute to a 'reciprocal relationship'. The fact that I keep trying, unsuccessfully, only makes life harder for all of us. Of the few friendships I have left, one of them recently asked me what I needed to be happy in life. How could I do anything but laugh, and bitterly inform her happiness is such a frivolous luxury it’s no longer even in my lexicon? Who the hell, in this industrialized nation chock full of first-world problems, wants to be friends with that? Is this seriously who I’ve become? So angry and alienated from society I can’t relate to someone I've known for twenty years on any meaningful level? Why do I even engage in these conversations at all? In fact, why do I keep going at all? 

And as quick as my descent into utter madness starts, I make it stop. Because if there’s anything I know by now, it’s how to survive the ugly condition of despair. How to distract myself with reason, numb myself with distraction, or reason my way into numbness. I've gotta get a grip, or my perceived reality will smack me down faster than any one aspect of my actual reality ever could. And Lord knows I've worked far too hard, been given too many second chances at this thing called life, and haven't even remotely completed what I was put on this earth to do, to let that happen.

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  1. I will never leave you or give up hope that we can return to our friendship I know how hard all of this is for you but just imagine I'm doing the same thing only alone I love you and I wait for the day when we can talk

  2. Wow i feel exact same way. Thanks i needed to read this now.

  3. You put into words exactly how I feel so often. Thank you. I voted again today!

  4. Leah, I hear you and I have felt that pain. Thank you for your honesty. I so agree with you that we have learnt how to pull ourselves up out of despair. I do it daily and go through so many emotions. Wishing you all the strength you need in 2015 from Fibro Blogger Directory and my personal blog Fibro Files

  5. I went to see a rheumatologist today they thought I have early arthritis due to being a carrier of a genetic disorder which I have past down to my son's she said she was almost certain I have fibromyalgia. Now I'm scared, confused about what this means. I'm the only one who works and if I can't work we have no money. I work 12 hour shifts as a carer but I'm finding it difficult to cope with. I feel like I'm trapped at the moment .