I was invited by my friend Kathy over at The Fibrochondriac to participate in her blog carnival. The theme of her carnival is: What do you want people to know about you?
I was surfing around through my old posts, looking for an appropriate one to share, and I came across this post I originally published October 13, 2008, the same month I began my blog.
Selflessly Selfish
I struggle every day with who I am. I am different because of the Fibromyalgia. I am not the independent, fiercely productive person I once was.
Every morning I envy (but am grateful for) my husband and his ability to jump out of bed, hop into the shower, and rush out the door on his way to a destination where he knows his purpose and is able to perform at a high level. I lie in bed with muscle soreness, a dizzy head and complete exhaustion and wonder, “how am I going to contribute today?”
And it is not simply how am I going to contribute to my house and my husband, but how am I going to contribute to my physical and emotional wellbeing, and how am I going to contribute to the world around me.
Sometimes it is the smallest things I do that contribute the most and make me feel the best. I dry my hands on a dishtowel rather than a paper towel. Yippee! I just saved a tree. I pick up the wrapper from a straw that a fellow patron at the coffee shop has let the wind take away. She doesn’t know it, but I do and it makes me feel good.
There are days when I let the wrapper blow away. Days when I tell myself I am in too much pain to bother, but I never feel good about those moments. I always feel that I have given up or given in to the Fibromyalgia. If too many of those moments build up I get depressed, and then it becomes even harder to live productively with FM.
That is the point I am trying to make. I struggle to be a better person for myself. To be someone that, in spite of all that is different in my life, I still feel useful and productive, and that in very small ways I am contributing to my world. By trying to be conscientious and selfless I am being selfish, because I am the one who benefits the most. And the small things add up. They really do make a difference.
So what did I do that was so great today? Nothing so far, but the day is not over. I still have time.
Wow! Rereading this post really took me back. It really made me take a moment and reflect on how much has changed in the 18 months since I began this blog.
And that is what I want you to know about me: I have changed. I am different. I am improved.
I am no longer at the mercy of Fibromyalgia. I am a participant in my health, not an onlooker. And I got here by making many small changes:
I created a community, starting with this blog, which brought people like Kathy into my life. I began sharing more and worring less because I have a greater support foundation to rely on.
I began doing research and filtering the abundance of information on Fibromyalgia to determine what fit best for me. I determined a holistic approach was more appropriate for me than the pharmaceutical approach taken by most doctors.
I added supplements to my daily care.
I began practicing yoga and cut gluten out of my diet. Through research, trial, and error (and believe me there were years of error) I found what works for me and my health.
I slowed down…… and took many baby steps to avoid making those painful leaps.
This has been a true journey, and I am so grateful for how far I have come. It was not without work, setbacks, and a lot of effort. But the foundation for my change came from the belief that I could improve, and that it was up to me to figure out how.
I am still frequently tired and dizzy in the mornings. I still have daily symptoms. I am not always able to contribute. But my progress is discernible.
I hope this encourages you. I hope you are able to look closely at your daily habits and routines, and distinguish what nourishes you from what holds you back. There are many components to Fibromyalgia we cannot control. Take a look at what you can, and honor yourself by making the best choices for your particular situation. You can change. You can improve. Believe it!
My own life very much identifies with this post. Both from the past and present day. I have really noticed that those with fibromyalgia that go gluten free and and vitamins and yoga seem to be doing so much better than those of us who continue on the path with ‘modern’ medicine and medication.
Crys, I have to agree with you. I have met a lot of people suffering from FM or related chronic illness that have tried everything their doctors prescribe with little to no improvement, but with a lot of side affects. I have not met one person who has taken an holistic approach who has not improved and who suffers from side affects. There has to be something to that. I still take an occasional pain killer when I am in a particularly bad flare, but my need for them is becoming less and less. I am so happy I have gone gluten free and continue to practice yoga and I can’t recommend both enough.
Thanks for the encouraging words. I am hopeful that my decision to stop the meds is right. I stopped Lyrica and Cymbalta six weeks ago – the withdrawal was worse than the 5 years I have lived with FM. I decided the benefits of pharmaceutical treatment was not worth the side effects. I am trying to learn as much as possible about the right supplements and holistic methods! I would love to know what works for you – I know we are all different but I am just trying to look at what works for others. Thanks & I look forward to following your blog!!! God Bless!
Shonna I applaud you for taking such a brave step. I can’t imagine what the withdrawal period was like for you. Bravo for sticking it out. Personally I take very few supplements, but there are some I may be adding to my regiment. Daily I take a good multivitamin, magnesium, and fish oil. Since taking these three regularly, my sleep has really improved, and in turn so has my pain, energy, and cognition.
From all accounts, Vitamin D is a must for people with FM, and I do plan to add it to what I take. Beyond that I recommend you do a lot of research. Dr Andrew Weil has a lot of great articles on supplementation. Also, I have found a lot of useful information on womentowomen.com. Also I recommend finding a good holistic doctor. Be careful though. Some of them are in the business of selling supplements. I found a great holistic chiropractor who started me on my holistic journey.
Best of Luck to You!
I am also on Cymbalta and Lyrica and I do not like the side effects. I have just heard of a doctor who uses supplements and holistic medicine. I am hoping to get into to see him and get started on using diet, supplements and vitamins to treat fibromyalgia instead of all these drugs!!
Awesome Donna! I hope this doctor turns out to be a good fit for you. More and more western medical professionals are incorporating eastern/holistic philosophies into their practice. It really is the way to go. Some people do well on Cymbalta and Lyrica, but if you look closely at the research, the amount of people they actually help is minimal, and the percentage those people improve is less than 50%. So you really have to weigh is it worth all the side effects. I am glad you have found someone to guide you! My best to you.
I am so torn on how to treat my Fibromyalgia and this makes it even more confusing. If only I could find a vitamin or pill combination treatment that would work!
If only there were a magic pill. I totally understand Annie. Unfortunately there is not, and there never will be. Sorry to confuse you more, but please don’t get discouraged. The very fact that you read this post means you are online doing research, trying to figure out what is best for you. That is awesome! Keep it up.
Take baby steps, and absorb what suits you and discard the rest. The fact is, we are all our own best health advocates. There is not a doctor on this planet who knows exactly what is best for us. We have to determine that ourselves – through trial and error, and by listening closely to our bodies and trusting our own instincts. And hopefully with the guidance of knowledgeable and trusted health practitioners.
Each symptom you feel is a message from your body. The trick is acknowledging it and learning what it means. I wish I had an easier answer for you Annie. I understand how you feel, because I was there not that long ago. But here you are – trying to figure out how to treat your FM. My hope for you is that one day soon you will be able to say – “I have changed. I am different. I am improved.”
I am glad I found your blog. I am so frustrated with my treatment. I tried the hollistic route for about 6 months with no relief. Then I went the traditional route and have had some reactions to different medications. I’m tired of the ER visits and I’m tired of getting shuffled from one doctor to the next. I have no idea what to do.
What I do know is that when I look at a picture of myself from two years ago, I cry. I see that lady with bright eyes and a big smile and I miss her. I miss her sense of humor and her bubbly happy disposition and her active lifestyle. How to get past missing her and accepting who I am now is my biggest challenge.
Oh Dena, your comment really touches me. I understand completely how you are feeling. It took me over 12 years of grieving for my old self before I attained of level of acceptance and it was only then that I began progressing. It really is a grieving process you are going through. But you are already aware of your need to accept where you are now so you can move forward. Just know that you are not accepting that this will be your forever reality. It is only your current reality. Through your efforts, and unfortunately with a lot of trial and error, you can improve. You may never be the same person you were two years ago, but that doesn’t mean you can’t be equally fabulous.
I wish I could share the magic recipe of how I got here, but I can’t. The only thing I can share is encouragement and hope. Let your frustration fuel you. You are worth the effort it will take. Don’t accept that you have to be miserable. I wish you all the best!
Dena, just know that you are not alone in your quest for acceptance. I had to quit working 8 years ago because of fibro and cfs; I still don’t know “who I am” anymore. I read these positive posts and realize that how I react to my situation is key; it’s just so hard on the days you are feeling like crap. I have been ill for 10 days–don”t know why–fatigue, pain, nausea. I am not much fun to be around. I have tried medications and alternative therapies, but I have not cut out gluten. I have tweaked my diet in other ways, though. I am very grateful for my family, my home, etc. but (and there is always this “but”) I don’t know how to make that enough. All we can do is breathe, take baby steps—one at a time— and concentrate on the present. Sometimes when I read the positive stories from other people, it makes me angry that it’s not me writing that. But we’re all different. Live. Love. Laugh. (especially laugh!!)
Great post. You’re so right -everyone’s path through to recovery is different, although there are common principles, like “don’t EVER give up” and “try and evaluate everything carefully” (within reason – I do hate those ‘detox your colon’ scams).
Exactly! Don’t ever give up. It helps to have the support of others who understand – even if we only ever meet in the comments section of a blog. 🙂
This is my worst ever fibro flare in over a decade. Yes, I went through denial, grieving and acceptance again and again as not all flares are the same.
I am on Cymbalta and Nexium. Although I haven’t gone glutten-free yet, I take care of my diet and am taking supplements.
I am so blessed that after doctor shopping for years, I found the current MD/Physiotherapist. Twice weekly, I go for aqua therapy, medical massage, accupuncture, etc. that the pain and stiffness are managable.
My main goal is to overcome the chronic insomnia.
Yes, I have changed a lot. I am very pro-active in my fibromyalgia treatment.
Usually when I am in a worse than normal flare, if I take some time to really think about it, I can pinpoint the cause – something I ate, an unusually stressful event, etc.. It helps to know the cause to try to avoid it in the future. It is encouraging to know you have such great medical support. You obviously took the time to find the doctors right for you. It can be an exhausting and discouraging search. Kudos to you for being so proactive!
P.S. Magnesium has really improved my sleep. You may have tried it, but if not I highly recommend it.
Awesome! I just sent your post through Twitter. Finally, there’s some fibro fighter I can relate on.
I’ve been there. Procrastination, muscles pain, fatigue, feeling miserable. But one day, I’ve said to firbomyalgia she is not invited anymore in my house. I am now on a lot of raw food, nothing processed, just things you can find in nature: fruits, vegetables, nuts, rice, lentils, chickpeas. A vegan raw food lifestyle (with just a bit of cooked food), some walking, some weight training and voilà! I feel much much better than 3 years ago. Can you believe?
Congrats go to all who take care of their health with a proactive solution!
Karine
Hi Dena, thank you for your input. Yes, finding the trigger-event for a flare helps big time. I’m getting better at this, but sometime I do miss the signal due to fibro fogs. I’m on magnesium chloride which helps with pain n stiffness.
Thank you again as I feel I belong, I can share and it’s a great boost to my morale. Living in Thailand where most MDs are ignorant and suspicious of fibro makes me feel like a pariah.
I want to say thank you for all your encouraging words. Sometimes it is as if I am reading about myself. I am still trying to manage my fibromyalgia and I am really confused as to what is right for me. I know everyone is different. Right now I am taking Lyrica and Elavil and if I am having a really bad day, sometimes I take Darvocet. I also take Effexor for depression. I can’t help but think about all the bad side effects that come from these medications, and I am not even sure if they are even helping me sometimes. I don’t have the strength to wean myself off these medications at this time. They do help the pain, it is lots better than it was 6 months ago. I keep telling myself that I am going to start yoga, but I haven’t got the strength to yet. I know it would be good for me. I do intend on starting it.
Just wanted to let you know tha your writing gives me hope for a better day. Your words are encouraging and I know you are helping alot of people with fibromyalgia. Thanks again.
Hello to everyone who is dealing with, learning to accept, not accepting, who may be confused, sometimes just plain out angry, depressed, or whatever your personal situation is in dealin with fibro I myself have been all of the above. I understand the disconnect you may tend to feel with the person currently affected by the symptoms as oppose to the person that you may have been prior to the diagnosis and the symptoms that it entails. Guys if I may be blunt…..I’m so tired of being sick and tired. S ome days my be more bareable than others if it’s more so a dull ache im experiencing as oppose to the acute pain that sometimes renders me “Out For The Count” in a matter of speaking. I so wish all of you well, because I don’t think it’s anything that you could say that would shock me because I too probaly have felt or is feeling the same way. Don’t get me wrong I am appreciate of the days were so I am functional and the pain is not at an all tiime high. I have been prescribed just about every pain pill to cortizone shots and have not yet gotten the results that I want to have. In conclusion I hope things work out ,one way or another, for all of us…..Keep in touch
Milly,