Sick and Sick of It

I miss the old me. I miss the me who could stand for more than three minutes, slice her own food, dance for three hours straight, and who could laugh without feeling pain. I’m letting myself say this: I really miss that girl.

 

Sadly, she’s no longer with us.

 

This is the new me: I have fibromyalgia. It has been defining me without my permission.

 

Fibromyalgia has become more than just my disease; it is my way of life. No matter where I turn, it stops me. I have to take it into consideration, because if I don’t, there are consequences. It trumps everything else in my life. I once described it to my friend as “a scared infant with serious abandonment issues”. If for even one second I manage to enjoy myself and forget it’s presence, it makes sure that I know it’s still there.

 

On August 8th, 2012, I was diagnosed with fibromyalgia. I sat in a waiting room next to a boy with Cerebral Palsy, a smiling little girl whose mother was crying the entire time, and my mother (while my dad worked out insurance details). It was the first time the truth looked me in the face with a smug smirk. It was the first time I allowed myself to wonder what my life would look like when I walked out of the hospital. It was the first time I realized that I would never be a normal girl again.

 

Now I know that when something bad happens to a person, all they want is to go back to where they were before it happened. I think that with hardships, we tend to warp whatever was before into an amazing place we want more than anything. But was it really always that great? Ever since that fateful Wednesday, all I’ve wanted is to go back to the time before my fate was sealed. But today… today I have really felt, for the first time, that there’s no point going back. If I really wanted to go back to a time when I was happy, I would have to go back to age 7, before my family moved to other side of the world and life itself became one big hardship. Looking back, pretty much since then it’s been one thing after another… it just seems like a lot of bad stuff has been coming my way.

 

So considering that, do I really still long for what things were like before I was diagnosed? It wasn’t really all that great. Neither is now. All I can really hope for is that my future is better. I have learned not to tempt fate, never to say “from rock bottom you can only go up”, because I have discovered there are things more bottom than rocks. Like mud. And snakes. And bugs. I really don’t like bugs.

 

I can’t change my past. My attempts to change the present aren’t proving fruitful. And what do I know about my future? What if I find out that for the rest of my life I will be longing for what I have right now? I’m laughing at that thought, in the dead hollow that seems to be my inside, because why would I ever yearn for this nightmare? But who knows. I just hope I don’t.

It’s hard to express my hopes for a brighter future, because when I say them out loud to another person, the crippling thought of “what if I’m still sick? What if by that point, I can’t get out of bed?” comes back to me and I shut up.

 

But to you, I will express these. Here, on this blog, I will write down my thoughts and my hopes for the future. I love writing, and everyone has told me that I have a future in it too. I have a lot of things to say, and I have written a lot of them down. And now I have a place to post them.

If you have any questions for me, feel free to ask them. If you have words of encouragement, I would love to hear them. If you have judgments to pass, remember that if you don’t have anything nice to say, you shouldn’t say anything at all. I don’t need any more bullies.

Hope to here from you soon,

Be kind,

Ella

Song that’s stuck in my head and magically goes really well with what I’ve written:

“Believe I’ve got high hopes… But the world keeps spinning around.” ~High Hopes, Kodaline

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3 comments on “Sick and Sick of It

  1. kintsugi999 says:

    I tried for a long time to find the magic pill, the one remedy, the single path to perfect health – whatever hope someone offered, be it medication, or meditation, or herbal tincture, I would try it in desire of a healing. In hope that tomorrow I would wake and not be sick. Eventually I got rather sick of that mentality, of that blind hope in something else. Of course I keep trying, I’ve just adjusted my .. expectation.

    I was diagnosed with Fibro over 20 years ago, and though I’ve had my ups and downs along the way, and I still have my days of depression over it, over my bodies state of being, I’ve finally come to a much calmer place within myself.

    For many years I let the fear of what if (I get sick, feel pain, have a headache, can’t eat what they eat, can’t walk as fast, or at all) keep me from even thinking of trying new things. Eventually though I saw that it was the fear keeping me from it all. And over the years I have let the worry go, from trying new things, adventures, jobs, friendships – though it has affected them of course, not everyone, or every job, will have any patience for where we are at.

    It has simply led me down a very unique path in life, but one still full of friends (some of them are new friends, ones that understand), some family (they don’t all get to a place of understanding either), adventures (even travel), and lots of time to read and grow. And in ways I may not have been able to if I had a “normal” healthy body.. I would have been too busy working, partying, hanging out with everyone on adventures as they saw them – not as I wanted them.

    Of course some days I am still terribly sick of being sick. But like everything else, this too shall pass. It’s an opportunity to find something I’m not sick of in my life, and focus on that! (Or so I tell myself)

    We can’t change the past and the future isn’t here yet, so all we have is this moment to use, to appreciate, to build on for the future. Sometimes it’s just about being in the moment, as it is. Ok, it’s almost always about that, I believe, but it’s easier said than done I know.

    Anyway, I didn’t mean to write a novel.. but just to say it gets better, maybe not in the ways we thought it would or planned on it, but it does actually get better.

    Thank you for sharing your journey..

    Like

  2. Ella, I am so glad you visited my blog so I could find yours. I can relate to your posts so much. I have chronic headaches, day in and day out…I also have a lot of shoulder/neck pain/tension and other random issues, but the headaches are what killing my life. One dr said I had fibromaligia, other ones felt that I don’t fit into the categories based on trigger points…it really doesn’t matter to me…Likely I don’t have fibro, but certainly have chronic pain that limits and affects my life. I miss the old me. Anyways, keep writing!

    Liked by 1 person

  3. Hi Ella

    In the past week I began the process of writing about being ill, hoping it doesn’t sound like a whine, but hoping that somehow my words will help others. I have also discovered how therapeutic it is.

    I am yet to be diagnosed with anything. All I have on the medical records is a query of chronic fatigue syndrome from 1999. You see I was coping with it, now I’m not so much. So am back at the beginning of the diagnosis procedure. My GP and I are pretty sure that I have Fibromyalgia but the hoops to go through take time.

    Anyway, keep blogging away, you are a good writer and I look forward to following your thought processes.

    Kind regards Faye

    Like

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