There is nothing like a Fibromyalgia flare to put things in perspective and to force me to prioritize!
I have been feeling pretty awful lately. I can always count on the heat of summer to bring on several really bad flares, or just one continuous knock-me-on-my-butt-and-suck-my-joy-of-life kind of flare. This summer had been kind, mild even. And then last week happened. Wouldn’t you know, it picked my birthday week to turn miserably hot. Blech!
Perspective: Regardless of my enthusiasm for turning 40 and the promise of a brighter future, I still have a lot of work to do. I still have an active and severe case of Fibromyalgia. I am still learning to manage my symptoms. I am not in control – yet.
When flares happen they also force me to prioritize. How important is it really if I am not caught up on the laundry? As long as there is something clean to wear, not very. Will my friend still love me if I cancel lunch on her AGAIN? If she is really my friend, then yes.
The biggest thing I have battled with during this flare is my commitments. I had a very big and important local support group meeting to coordinate when this flare was just beginning. I felt out of focus and disconnected through the entire event, but with help, I made it happen. It was a great evening attending by members of FibroHaven and also people in our community looking to understand and learn more about Fibromyalgia. I have the NFA to thank for the event, and plan to do just that in my next post. On my list of FibroHaven related priorities, this event was at the top.
My blog would be next on that list. Notice the lack of posts from the last few weeks? It is usually the case that I write less during a flare, but in this instance there is another reason I have not been posting – guilt.
Several months ago I made the commitment to write a post a week for Everyday Health.com. I felt it would be a great way to help raise awareness for Fibromyalgia and add some good articles to my writing portfolio. What I didn’t expect was how it would affect my writing on my own blog. I like to come here sometimes and just blurt stuff out, or share a random thought or two. I really have no rules or structure for this blog. It is purely me in the moment. Everyday Health is different. There I put on my serious and authoritative hat. My writing there takes a different level of commitment and energy from me, and last week I decided I was not up for submitting an article.
But that decision was not without consequence. I felt guilty for not following through on a commitment. And every time I considered writing a post here, the guilt of not writing one there kept me away. That is not what I signed up for. Bottom line, this blog is my priority. So I really had to take the time to consider where I went wrong and how I could correct it. Where I went wrong was in agreeing to writing there in the first place. It was my ego that fueled that decision. When they contacted me to be a featured blogger for them, I was thrilled by the compliment and it was that euphoria that motivated my decision. I did not consider how it would affect the work that I am already doing here and with the other components of FibroHaven.
Priorities: FibroHaven is my priority, in all its forms, and anything that takes me away from my commitment to it, or minimizes my experience with it is not beneficial to me.
I am no longer going to be writing for Everyday Health. I appreciate the opportunity they gave me, but I recognize that I have not given it my best, and I will not settle for doing anything less.
Perspective and priorities. I know you have heard it said, listen to your body. Pain is your bodies way of trying to tell you something. Sure the message with this flare may have been as simple as “it is hot,” but I’m choosing to believe there is a bigger message, and I feel confident that I focused on the right one. It feels good to be back!
I’m glad you listened to your body, and respected its decision.
It takes a big person to get all of that and you did. Sorry that of took a flare for you to realize that but nonetheless. You totally did the right thing for you. I relate to you because this is what I have been struggling with a long time . Having a husband with CFS does not help either nor a child that counts on you. It’s easy to take on more when you are having a good day and know how hard it is to turn things down but you owe it to yourself and husband. Yep, lots of little rudimentary things can wait. They are not going anywhere . I was worried about last week for you because it is HOT and just sitting in our house makes us all sweat so I know ! So, you are here and your back and now you’ll remember or try to prioritize what’s important and the limitations. Hang in there . We all know how you are feeling . One moment at a time…..
How true this is…nothing like a flare to really put things in perspective! I have found myself over the last few months in a period of transition and continually learning a new perspective while revamping my priorities. I love how you shared your process with us and your priorities. It feels so good to have a clear perspective and for the fog of guilt and and confusion to be lifted. I am glad you shared this experience so transparently with us, there are many things I know I can hold on to from it.
I’m sorry you had to give up something that gave you so much joy. I understand your decision though, and you bless us all with your insight. Everyday Health has lost a great resource.
Many blessings, Anna
I love todays blog it is so honest and I am sure the extra stress just made things worse..I know it does for me. I have been suffering for awhile now and feel all alone with the pain and guilty for laying on the couch and not out playing with my kids or cooking or laundry but after working all day I just hurt to bad most days. If we all did the priority thing we would be a much better person. Thanks, Rhonda
Honest, insightful and not whiny. I’m impressed with your writing and perspective. And btw, when I have a flare I get whiny and can’t write (or speak for that matter) coherently to save my life. So yeah, I’m really impressed!
I have also been struggling. I saw someone said to you “we need to learn to say no gracefully, and then surround ourselves with those that understand that”….something like that, and it speaks volumes to me. It is very hard for me to say no, especially at work. I feel guilty for not being the kind of worker I was 10 years ago, before I got sick. Now, I tend to always over do it at work, and then I pay for it every moment I am not at work.
I am glad that FibroHaven isn’t going anywhere, I can’t tell you how much I love reading your blog, and I know that I will always find TRUTH here, and not a bunch of malarkey. Thank you for all you do for our community!
I can so relate to the commitments thing! Its so hard for me to make plans because you never know how you will feel. My friends don’t bother inviting me anymore but I do have one weekly lunch commitment that I will not miss unless its absolutely unavoidable (i missed yesterday because I have a herniated disc/pinched nerve or something that has totally disabled me…do you think it could be fibro related?).
I think you were very wise to choose not to keep writing for Ever day Health, although I am sure it was not easy. I hope you are feeling better and that this dumb hot weather ends soon!
I’m new at blogging even though Dannette, I’ve enjoyed reading your Fibro Haven writings for a few months now. It’s been a few years that I’m mostly in flare-up mode. I’ve had to scale back and prioritize my life and make some big sacrifices. I am a french native who has lived in the States over 20 years. I was quite active in our local French community which involved writing newsletters, organizing events, attending parties & functions often 45 minutes from here. I knew that with fibromyalgia/CFS, I only had so much time & energy to go around & I had to focus it on my young child, my family & friendships close by.
I volunteered at my son’s school for a few years but last year I had to stop even though I enjoyed it The guilt of not sticking to the commitments was stressing me.
I asked a friend (who has a severe autoimmune disease) why I keep on planning family vacations that I often can not go to. Her answer: we need to keep hope. Hope is what keeps us going.
Good day to all!
Pascale
I know you understand Clarissa. That is why it is so comforting to share my pain and experiences here among my peers. I wish we did not have this in common, but since we do we may as well commiserate about it. Thanks for sharing.
I think guilt is what I struggle with the most, and the worst thing about guilt is that it is self-imposed. Don’t we suffer enough without adding to it? It is so hard to find balance. I honor you for working on it so diligently and wish you well in your journey Amy.
Rhonda I always feel humbled by you moms with chronic illness. I have so much reverence for what you do, and I imagine there is a whole level of guilt involved I cannot understand. But the fact remains that you do need to lay and the couch sometimes. By taking care of you, you can then take better care of them. You are a priority.
Thanks for commenting on todays blog. It felt good to be so honest.