Way back when, in April of 2013, I created this site. Since then I have had over 40,000 views, visitors from over 150 countries and I’ve written over 115 posts. I have gained so many positive things from this site, and for that, I would like to thank all of you, and myself. We make a great team. With all of these feelings inside, I thought I would share my very first post with you here. Many of you followers clicked that little button a while after my first post, so you’ve probably never seen it. It’s very meaningful to me and I love it, so I hope you do too.
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 its 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 hear from you soon,
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
April 10th, 2013
Thank you for sharing your story. I love that song High hopes. It gave me hope in some tough times and another great one for encouragement would be Even If by MercyMe…
God bless. Will keep you in my prayers
You are a magical writer and thanks for visiting my site. I’m so glad you did as it means I’ve had the chance to read some of your writing.
You are a strong and powerful young woman Ella. I know how difficult chronic illnesses can be, but even though it may sometimes, or often, seem like a majority of you is your disease, remember your baby soul is still pure and untainted and a free entity, fly away with it in your words and thoughts like you do. You are an inspiration, keep writing! XO
If I can give you any advice about fibro I have it for at least 14 years please do not let it define your life. You are a talented writer let that be one of things that define you, along with the things that you are passionate about. You are very creative another thing that could define you. You have to beautiful a soul to let a disease define you. I try to look on the Brightside I have more than one chronic disease Asthma that is so bad I can’t go outside, Chron’s disease, but the hardest for me to deal with is the fibro, Many of my friends and relatives want me to give up my horses my farm and my dreams but I won’t do it that would be letting the disease define me. All my friends see is the illness and lose sight of me. They think if I sell the farm and live in a little house everything would be good but they don’t realize the disease is still there and it won’t stop just because I have less to do. I would still have the same pain the same battle. That’s why I encourage you to find the things in life that you are passionate about and let that define you! I wish you all the best and If You need a shoulder to lean feel free to leave me a message all the best Jen
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I’m pleased to have stumbled across you. A beautifully composed and poignant piece.
you’re truly a princess! I loved knowing you and your story. You’re a brilliant write.
thumbs up for you.
As I was reading your words, a thought came to mind, and no sooner than it had, you were writing much the same thing in the next paragraph; namely, what if this time one day looks like the “good” time? Sometimes now I will consciously stop and assess the moment, with all its faults, with that idea in mind: I may one day be nostalgic for NOW.
From what I’ve read hear, fibromyalgia may have invested, but you haven’t let it make a deposit in your heart and soul. You’re a champion and a spirit warrior. Write onward.
I wish for you many good days and wondrous stories from your steely fingertips and keen brain…
Beautifully written Ella. I can’t imagine what it must be like. But I know of someone who can. http://www.youtube.com/watch?v=GSayMXTaQY8
We often talk about going back to the way things used to be, but that truly never happens. I’m impressed by your attitude to the whole thing. Its inspiring to hear you talk about shaping a bright future for yourself.
Surely I’ll be keeping you in my prayers from now on. :)
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I love this. Especially on the part when you said that you were going to write about your thoughts for the future. It was so delicate and true. I felt it.
I had a lot that happened to me too, including the post you liked. And I’m thinking that it’s wonderful too to let ourselves be seen as fragile. I’ve always been thinking of my pride and proving to people that I could, you see. Thank you so much for inspiring me.
I so enjoy your writing! I have chronic illness myself and i love every word you write!!
it is so refreshing to me to hear someone speaking so sincerely, you’re up front honesty about your situation is inspirational
I enjoyed peeking around your blog and I like how you write from the heart and soul. Thank you for sharing your journey…
I believe that you are amazing! Thanks for sharing you with us. :)
So true, Ella, that you may wish one day that you could go back in time. I wish I could go back a year, before rampant itching came along. I thought I had it not so good with “just” the fibro; now I wish I had “just” the fibro! You’ve created a most inspirational site.
Hey Ella! You are a great writer so keep doing what you’re doing! :)
I’ve enjoyed (if that is the right word) dipping into your very honest blog. Life can be very harsh, and also made worse when others seem to disbelieve what life is like for us, simply because it is outside of their own experience. Looking forward to reading further in the future,
Sorry…I mean the soul of people! :-)
Your writing skills are unquestionable. Words have the power to reach the soul of the people. You have found a great way to respond to the Fibromyalgia and all that it entails. As you say, it is a need for you to write. But what you write is also helpful to others. For example, it is an opportunity to learn about this disease. Your blog is an excellent starting point. Sharing is a valuable weapon that you are using very well. In spite of everything, you can still be the girl you were before the manifestation of the disease. In a different way, but you can. You will be successful in writing and many other things. I am sure of. :-)
What a great writer you are Ella. I have fibromyalgia too, I am 25 and have had it for 2.5 years. I very much think of my life with a BC and AD, the before and after fibro. Your words are on the subject are spot on. Just one quick thing: the guaifenesin protocol really helps fibromyalgia. It removes the calcium phosphate build up in our muscles causing our horrendous symptoms. Just a thought if you hadn’t tried it. It’s slow but I wouldn’t be without it. Laura x
You’re a brilliant writer. So emotive and evocative.
Congratulations on reaching the 1,000 follower milestone. I’m far from that, and realize how much work it is to get there.
My better half, Cee, has Lyme Disease. It’s a sneaky illness that is often misdiagnosed as fibro, so we understand a lot of what your life must be like now. For twelve years we lived in constant terror as the disease shut down her body. She went through a long coma and two near-death bouts of multiple organ failure. Living with chronic illness not only shuts down your body, but also your mind, your soul, your world. Our Story
We’ve discovered that Traditional Chinese Medicine heals chronic illness where western medicine often can’t. Cee was living on four antibiotics every day and has now been off them for an entire year. There is always hope. We’re going to be including advice for those who have chronic illness is our new food blog Three’s Cooking, so please join us there.
I think your writing is fabulous, especially considering you’re doing it through fibro fog. I’ve lived with someone in Lyme fog for twenty-five years, and it must be similar. I’m sending you lots of virtual hugs. I’m going to reblog you on 61 Musings in the hope of you getting even more followers.
Thank you for touching my life, even though we don’t know each other. That is a true gift. I hope you are able to keep sharing your struggles and your triumphs with all of us.
Glad I found your site and have heard your story. I will read the rest of your articles. You are a very descriptive writer and you write with much emotion. I plan on researching fibromyalgia for some of my posts, so if you would like to give me some information on any supplements or alternative treatments you have tried and how they have or have not worked for you, please write to me. If you haven’t tried anything and want to know some things to try, please let me know.
Also, my Mother has Parkinsons disease and we were just talking about “not going back” to the way it used to be. Mother talks about being herself “before” Parkinsons and talks of herself “after”. What we’ve learned as a family going through this is that she had to walk from the light of her former life into the darkness of her disease to get to the other side where she found light again. It was her fear for awhile that kept her from walking through the darkness into her new life and embracing it. To embrace and accept her weakness was very difficult and without the Lord to comfort her and give her strength, she would not be here today. She’s not the same, but the changes that have happened have given her the opportunity to speak into the lives of others, as you are doing. She struggles, but has people around to love her through the hard times.
Thank you for sharing your struggles. I will be praying for you and will let my Mom read your posts! God bless you.
You’re so kind. I would be honored to have your mother read my posts, and would be overjoyed if she were to write to me and share her thoughts with me!
I agree that there is no point in going back (even if we could). And if the future can be worst than the present, is there any point in looking “forward” to it?
I am presently waiting on doctors and tests to see what my condition is. But I look at it this way, it’s just the universe telling me to make use of this life before I no longer can. Now, for me, that means deepening my practice (meditation) and finding some way to manifest my Buddha nature. Having only just come across your site I understand your’s is to write. Good fortune with that.
I am now following your blog. Thank you in advance for sharing your story.
I have fibromyalgia, had it for 14 years now and I’m 66. I call it the Fibro Follies as it seems to have a life of its own, but I’ve learned to adapt and manage and slow down. The slowing down is the killer, I have learned to do half of what I’d like to do to stay on a relatively even keel. But there are days when I wake up and feel like a Mack Truck has chug-a-lugged back and forth over me during the night and I have the dreaded Fibro Fog. I’ve learned to stop doing anything, not to try to force my way through because all you do is hit a brick wall and bounce off, and to do half of what I think I can do on good days. On the positive side, I’ve embraced art and writing which I wouldn’t have done if I was still running around like a half-arsed monkey. What doors is fibromyalgia opening for you? Good luck.
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Ella, you write as though I was talking to you face to face, your tone comes across pure. I enjoy reading what you have written. And always remember – a piece of paper is not blank, it holds a story to be told – my philosophy that I now share with you. I look forward to many more posts from you. Keep strong.
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You seem to have a magical disposition, I am envious of that. From youth comes such wisdom, keep that with you.
Beautifully written Ella, thank you for sharing your story. :)