Not that long ago my thoughts, emotions, and daily functions revolved around being sick. It was how I identified myself. I was sick, and living in a state of “I can’t.” Everything seemed like an enormous task and too big of a risk to take. I was certain that anything outside the safety of the small little zone of comfort I had made for myself would send me spiraling into the depths of my illness. I was sick. That was pretty much the entirety of who I was and the lens with which I viewed the entire world.
But I was never happy or content with that state of being. Who is? Who could possibly be? Even when we reach a state of acceptance with our illness, it does not mean that we are content living with it. I was certainly not content – a shell of my former self, and a shell of the person I could still feel inside of me. My true essence is not that of a sick person. My true essence is beauty, strength, light, love, and possibility! And I could feel each element deep inside me just waiting to burst through. Something had to change!
So I changed the only thing I had any amount of control over – ME!
Actually I did not change me so much are get reconnected with ME – the me deep inside that I had lost touch with over my many years of illness. She hadn’t gone away, she simply had been neglected. And the first thing I did to reconnect with her was to forgive myself for neglecting her, for neglecting ME. I had been doing my very best to cope with my illness given the skills and understanding I had available to me at the time. As we all know there is no manual on how to live with chronic illness. It is a complete process of trial and error. We are the pioneers of fibromyalgia. So where to begin?
I began with the simple belief that my life had much more meaning than my illness. I began to listen to my intuition, which told me things could be different, things could change. I allowed my true essence to become louder than my doubt, worry, frustration, and fear. I gave more authority to ME and less to my illness. I opened my heart to the truth of ME and began to allow hope and joy back into my life. I worked hard at not letting the once loud voice of my illness, which at times drowned out any other sounds, to again become the only thing I could hear.
And I did more work. Slowly, yet regularly I began practices and behaviors that reinforced ME and turned down the volume of my illness. I completely changed the way I ate – no more gluten, and a lot more veggies, nothing processed, everything fresh. I began a regular yoga practice, starting once or twice a month in the extra gentle, senior class, and slowly progressing over two years time until here I am today, teaching gentle yoga and practicing regularly. I began reading books, magazines, and web content that enhanced and reinforced my new focus. I found a local spiritual community where I feel love, hope, and an even greater connection to the essence of ME. I could go on and on, describing the ways I have worked over the past two years to reconnect with me, and disconnect with my illness, but I think you get the point.
I am not symptom free. I likely never will be. But what I am is hopeful, and happy, and whole. I am whole despite what is missing. I am whole despite what is different. I am whole despite my symptoms. I am whole because I am again living from my true essence, not from my illness.
We are all so unique and valuable. I believe we feel pain so intensely because we feel everything intensely. It is exactly our capacity to love that gives us this incredible capacity to hurt. We can chose to focus on the love, and the essence of our being, rather than on the pain and symptoms of our illness. It is not living in denial. It is not mind over matter. It is essence over illness. You are so much more than your illness! And you illness can never diminish or extinguish your true essence. You were born with it, and you will die with. Now is the perfect time to find your own way to tune into it and let it once again become what you live from. Your formula will be your own. You know what makes your heart sing. You know what makes you feel like a complete and whole being. You know what makes you YOU! Find a way to spend more time there. You are love, you are light, you are beauty, and you are hope! The world needs more of YOU!
(self reflection photo courtesy of www.jennypalu.com/selfreflection.html)
Wow this is really great Dannette. You are so inspiring. You put into words like poetry what I am dreaming about and need to accomplish for myself.
And you will! I believe it. You are too determined and dedicated not too. Thanks for the awesome comment!
Thankyou Dannette. I know my essence is still in there…..I have felt it stirring. Your words give me the courage to keep striving, keep searching, keep believing. You really are an inspiration. xxx
When you feel it stirring Anita, grab hold of it and hold on tight! It is there. It is the REAL YOU. Believe it! My very best to you!
Excellent post. I like to live life without pain.
Reread this again today and inspired again just like the first time I read it. Thank you, thank you, thank you. I know we have different spiritual views, but I so appreciate you talking about your journey toward accepting the Fibro and not letting your life be about your illness. Such a great post, thanks for sharing!!!
Thank you Rochelle for taking the time to leave a comment. I write from the heart, and that is the place where we connect. It helps to know we are on this journey together!
Boy did I need to read this today. Also, I hope you don’t mind, I submitted it to Jenni @ Chronic Babe.com for inclusion in her blog carnival on spirituality.
Glad this served you today Kathy. It means a lot that you took the time to leave a comment and let me know. And I do not mind at all. I have an uncopyright philosophy on my writings and they are free to share. Wishing you the very best!
This post really fits with the theme of Invisible Illness Week this year: Deep Breath, Start Fresh.
I very much relate to what you have said/done. My yoga is container gardening and my community is blogging, Twitter and uplifting chronic illness sites like ChronicBabe. It’s all a working progress and, like you, I’m on a journey to discover even more.
I reblogged this at my blog Fibro Files – thank you so much for your sharing.
“Together everyone achieves more. There are no limits to what we can accomplish together.” W. Amos
Please call back into Fibro Bloggers Directory to get a badge.
Trying to find hope. I have no diagnosis for years of pain: 24/7 headache and balance problem that never ceases since I woke up on 11/11/2006. Mayo Clinic said it’s neurotransmitters but their meds don’t help. Chiropractic makes occasional dent in headache but not balance, and the pain/balance weirdness is never gone. This is accompanied by chronic pain elsewhere in the body that shifts like a lava lamp: eyes, jaw, NECK, arms, hands, knees, lower back radiating into lower legs, but they don’t think it’s fibromyalgia. Maybe it is. Nobody seems to know. Add chronic cough, chronic reflux. Severe memory issues; conversations, books, articles and my own spoken words are gone in moments. Oh, and I have allergies to most healthy foods: grains, veggies, fruits, nuts, beans and seeds. (Alternative doc says to drop dairy. Isn’t that helpful.) No problems with animal protein. Just lovely for a wanna-be vegetarian who doesn’t much enjoy eating dead critter. Really don’t know what to swallow any more. Tried a 30-day detox diet (fresh stuff, eliminating common allergens. Got sicker. Tried two weeks of nothing but a hypoallergenic powder, among many other things. Slight healing crisis, but no relief. Supplements supplements supplements. Tests tests tests. I still kick myself through eight hours of sitting at work at a computer. Not exactly the most productive, but faking well enough, apparently, so far. In the last year or two I’ve initiated a (badly needed) divorce, made lots of new friends at a local Unitarian Universalist Fellowship, and have made more through attending events with a local Meetup Group. I have a wonderful new boyfriend. Congratulate myself for all this. LOOK like I’m in good shape (5’4″, 120 lbs. I’m built with small bones and thin arms and legs). The fatigue IS a bit better than it was 2006-2009, thanks to some supplements (but they’re very expensive and I’ve had to cut back). But it’s still daily, 24/7 pain. Dancing isn’t fun anymore. Downhill skiing is out. (I still do X-country sometimes though I fall over), and I bike. I’m 48, and feel 70, and way too often no matter how many good things I put in my life, it all still sucks. I just wish I knew What This Is and Why I Got Hit With It All. I don’t expect answers from you. Just… Thanks for listening.
Hi
I just wanted to say I know how you feel. It is so difficult to try and be up beat when everything hurts. I am 45 this year been married for 11 yrs and have a daughter that is 10 that brings sunshine in my life since the day she was born. I have been diagnosed with Fibro for 9 yrs and lupus for 8. No matter how positive I try to be those diseases still knock me down. I don’t need to describe all that happens as u are living it too. To make matters worse I was diagnosed for only a year when my husband was in a car accident and had his spine smashed. How ironic that I was the healthy one. My husband and I have been and still are in so much pain every day and doctors don’t seem to be able to help. I really wanted to just say hi and to let u know u are very brave facing all the big decisions in ur life they way u have done. Im sure there is a lot more lovely days in ur immediate future. I live in Ireland and the docs are less informed then you lot there. Lots of love Lynda xxx
May I ask what supplements you took for the fatigue?
Hi Fellow Wendy : ), It sure sounds like Fibromyalga to me! I’ve been living with my illness for approximaely 20 years..and have only just been diagnosed in November of last year. Like you, I went through a marriage break-up. And years of being treated for depression..with no respite! When I first got my diagnosis of FM I was almost elated, finally a name for why I’m feeling so damn crappy! Then there was a period of much sadness when I realised that I have a chronic illness and no hope of a cure in the future. Now I feel more settlled.. I accept this is my fate…why I deserved to get this I still don’t know…but I do know there are so many kindred spirits all over the world who share my pain. And I can learn from them ways of coping… As you will also I’m sure. I’m envious that you can still ride a bike : ) But then…I never could ride a bike! : ) Keep the faith..and stay connected with fellow sufferers, and most of all…be kind to yourself. And…avoid people who don’t understand.. or give them info to read. All your symptoms I have…so I think you’ve found your answer Wendy. Stay in touch, Warmest wishes, Wendy
p.s. Like you I have a new partner who is really supportive. Count your blessings : ) Wen x
Thank you soooo much for this!! I needed this today at this very moment when I was feeling alone and stumbled across your site. You inspire me to try harder.
Wow. That’s what I dream of . Your comments are so true . And if one person can change and
Give hope to others , then maybe , just maybe I might can too . Thank you so much for the hope . God bless you in your journey . Let there be hope , let there be change for the better .
God be with you .
Jan
After living for years in constant pain, multiple surgeries I was “officially” diagnosed with fibro two weeks ago. I love this post. I have wallowed in my illnesses for so long. My life has been ruled by it and I so badly want to let it go. It’s time to choose joy and live life as fully as I can while accepting my limitations. So happy I found you today.
Wow, what a great article. This is half me, I am so not letting Fibro control my whole life, and I don’t think I ever did. Of course, I had to leave my full time job, but not long after, I started cooking at home, and providing home cooked meals to people, which made me get my butt out of bed in the morning, and have something to do all day. With nothing to do, I would end up lying on the couch and watching tv many hours of the day, which would only make my body worse. There are times that I am not able to do my regular planned day, but I have realized that pushing myself does not make it worse, unless I really overdo it. Then, sometimes I really pay the price.
Sometimes I ask myself if I do this because I am in denial, but I think I am more into the stage of not letting it ruin anymore of my life than it already has.
I swim all the time in the summer, and of course the winter is alot harder on me, but I make sure I do some sort of exercise, just to keep everything moving.
Fibro is awful, and it is very hard to explain to people, but as long as the people closest to you understand, that is most important. I still have hope that one day I can have my old life back, but in the meantime, I am determined to make the most of my life as it is now.
What a great post, I agree we will never live pain free, but we can be whole. I to started to teach something that helped me with my fibro, and that’s Zumba. A little more high intensity then dr’s like for fibro, but it’s something that makes me forget about my pain. I have been living medication free for the past few months, and although it is a struggle everyday I’m getting through. Thank you so much for your inspiration and your positive attitude, it is infectious.
I think this is all so true but if I didn’t have TMJ plus two bulged discs and nerve damage in my neck then I too would be moving forward more like you, but I totally agree that if you can change your thinking it can help a lot towards how you physically feel inside.
This is awesome, I admire your strength and optimism! @ Wendy…please contact me via email @ shedes@aol.com. I want to share something with you. I am sorry you are struggling as am I. Blessings! 🙂
Your story of your journey to find your hidden self was so beautifully written that i just had to respond. I too have been working to find Me inside my fibro controlled body. The excavation has been long, there have been times i wanted to give up, but uncovering the vibrant me that had been buried under the depression & pain has been worth the struggle. Yes, i daily live with pain. But i am not the pain. I am a beautiful, intelligent, creative, sexy woman with much love to share with my family, friends and stangers. I have a life above the pain.
This article is very inspiring yet I feel like it was cut short. Like I needed more guidance to get from point a to point b. I’d love to be able to do what you’ve done, I just have no idea where to begin!! It’s all so overwhelming! Awesome article anyways! You’ve got me thinking hard how to tap into the “old” Amanda. Thanks!!
Has anyone been treated by this Dr.Rodger Murphree.There are 8 utube vidieo’s of him out there.He talked a real good game. It made since.I’m trying to find out if he really knows how to fix fibro. The little seminar’s he gives has some insight. I’ll give him that.
Dannette,
It’s been awhile since I last saw you. I have finally found that peace that you have kindly written about and talked to me about. I took a eight week coarse on Stress Reduction and Mindfulness…Boy, did it hit home. We began to meditate, breathe and then gentle yoga. It has changed the way I perceive life…and how I looked at Fibromyalgia. I live in the present and in the now, than the past. I too, have changed the way I eat and especially the way I think. Although, we all struggle with the pain…I don’t ignore it, but just accept it and try to breathe though it. I have learned to listen to my body more ,and that it’s okay to say “no” when your body is telling you to do so. I do still feel guilt, but I am working on it, and I think that’s normal.
In the beginning of 2012…. I started to feel ready to go back out in the working world. I have already found some projects, that I can do on my own time. I am excited for this new adventure in my life. I want to thank you for always sharing, caring and showing us the light, when we were ready to see it. I hope in the next few months, I will be joining your gental yoga class and return to our monthly meetings.
Because of you…I have opened my eyes alot….it took time….but I am here. To live in the present and that only you, can change your outcome. Thank you!!!
Love,Light and Peace, Elizabeth Siberell
I was just recently diagnosed with FM although I’m sure I have had it longer then that for the fact it didn’t flair up this bac til after I had back surgery–2 rods and 6 pins put into my lower back. Also have degenerate disc diseasse in my lower back/ Can anyone let me know what type of medications you are on for the pain? I have problems some days with my granddaughters coming up and giving me hugs because it hurts so bad. I would appreciate some feed back on this.
Thank you so much for your beautiful, meaningful words. I have a long way to go, but I know I can do it. What I used to be is crying to come out. Thank you! Thank you! Thank you!