Special thanks to all my Words With Friends buddies who play with me when the pain will not let me rest and patiently understand when the pain, fatigue, and fog keep me from playing. You know who you are...and you are all most dear to me! ~Meshea
In spite of having Fibromyalgia (FMS), I am still an intelligent, creative, expressive person with many ideas I want to develop into papers, books, blogs, etc. My biggest enemy is not the pain or the fatigue, however. What holds me back most of the time is Fibro Fog and the anxiety it causes. In fact, I can honestly say that, while the pain and fatigue have limited what I am able to do severely, it is really Fibro Fog that I find the hardest to cope with. The pain will ease up and the fatigue will lessen, eventually, and even those who do not believe in FMS understand pain and fatigue. Ah, but the Fog; that is a different story.
What is Fibro Fog?
For those of you new to FMS, it is that mental state you find yourself in which is literally like a "fog". It leaves you unable to find words you want to say or unable to say the words you want to say in the order you mean to say them. Simple things like making out bills, balancing your checkbook, checking your child's homework, making sure you have everything in your husband's lunchbox, etc. become overwhelming; you just cannot think through them!
What causes Fibro Fog?
As with all things fibro, who knows for sure? There are many theories. Of course, anytime one is fatigued, thought processes are affected. The many theories given by the experts start there and move on to the possibility of low blood sugar, inadequate neurotransmitters, etc.
How does Fibro Fog feel?
Whatever the cause, the best way I know to describe it like a heaviness in my head, usually accompanied by what feels like a band getting tighter and tighter around my head. I find myself unable to process what I am trying to do, to say what I am trying to say, or to keep up with my surroundings. People in stores or cars on the streets just seem to be rushing past me, and though I try to keep up mentally, I feel like I can only think and move in slow motion compared to the world around me.
When does Fibro Fog occur?
Whenever it wants to! Seriously, it is more apt to occur if you are in severe pain and/or are fatigued, but Fibro Fog is its own entity. It seemingly does not require anything else to exist; it just does.
The unpredictability of Fibro Fog, the mental limitations it brings, and my inability to do anything other than endure it until it passes are the reasons why I feel that Fibro Fog is the worst part of having FMS for me. Fibro Fog is the aspect that makes it unsafe for me to drive very far, or even at all. Fibro Fog is why I hate talking on the phone, taking care of business of any kind, or going to new doctors. Fibro Fog is the main reason I cannot be dependable, productive, support myself...it is what has most robbed me of myself. Pain and fatigue take away my vigor; Fibro Fog takes away my ability to communicate and function effectively.
I believe, at least for me, that this is what mostly causes my anxiety issues: the unpredictable, yet inevitable appearance of Fibro Fog. Fibro Fog is what I have been most angry about...what I am still angry about...when it comes to LIVING a fibroLIFE: I truly hate it.
Of late, it has been much worse for me. Not because the fog itself is any worse, but because I am trying harder to accomplish things in spite of it. It is a vicious cycle. I am a bit foggy, but I want to write. So I sit down to write, my head starts to hurt worse, the "band" around it feels tighter, the words get harder to find, the thoughts get harder to form, so I try a bit harder...and then my head hurt worse, the "band" around it feels even tighter... You get the picture.
This causes me to feel even less productive as a person than I already felt. This increases my anxiety. This increases my pain, thus the fatigue gets worse, and then the fog gets worse... Yet another vicious cycle!
I wish I could tell you I had the answers to this, but as usual, all I can tell you is the truth: There is no magic potion, no magic beans, no hocus pocus, etc. and do NOT believe anyone who tells you they have found "the cure"! All I have found that works is keeping life as simple as possible, keeping up with fibroBASICS such as adequate rest, hydration, nutrition, exercise, etc., perseverance, a positive attitude, being thankful and focusing on what I can do rather than what I cannot do, and humor! Thank God for humor! (Oh, and I must not forget, Words With Friends!)
I am so very sorry I do not have something magical for you, but I do hope my openness and honesty can help you in some way. Read this slowly and compare your own experiences with what I have shared here. Share this with your family and friends then discuss it calmly, openly, and honestly. Pass it along to those who may need to read it. Write to me about your own feelings and experiences with that hateful, unrelenting beast, Fibro Fog. Let the anger out, the sadness, and the feelings of loss. But, also, recommit to fibroBASICS and persevere, be positive and thankful, focus on what you can do, and add heavy, daily doses of humor into your life! (Oh, and you might want to try Words With Friends!)
Founder and Director, fibroLIFE
Please take the time to read this wonderful blog by the very intelligent and caring Celeste Cooper! She does an excellent job of introducing a wonderful new book and documentary helpful to all of us who live with chronic pain.
The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MDInt
I recently had the pleasure of speaking with Dr. Lynn Webster for a second time, the first being at the gala and symposium Healing What Hurts: The Politics of Pain, which was also organized by the Center for Practical Bioethics for their initiative, the PAINS Project. You see, before he talked to a full auditorium of people eager to hear what he had to say, he visited in private with our local patient/citizens leadership group, Relieving Pain in Kansas City. He wanted to get to know us on a personal level, because frankly, that’s how he rolls.
(To continue reading, click here.)
One of the hardest things about having Fibromyalgia (FMS) is that I always seem to be beginning again, and again, and again, and again...
I not only find it frustrating, but also humiliating. After all, if I am fed up with writing about "beginning...again..." how much more fed up must my readers be of reading that I am "beginning...again..."? I have actually allowed this to become my excuse over the past few month for not beginning to begin again...again. That excuse can no longer stand however; not if I am true to myself. If my goal is to truly LIVE my fibroLIFE before all of you to help each of you LIVE your fibroLIFE, then I must bite the bullet, swallow my pride, pick myself up, and dust myself off, again, and begin again, again.
Because I know, all too well, that many of you face this exact struggle, and I want you to know that you are not alone, or lazy, or crazy, or any of those other negative thoughts that come to mind when you find yourself needing to begin again, again. You are NOT the only one!
Why does this happen to us?
First of all, this is not limited to just those of us with FMS. Many other people face the same problem, for a variety of reasons, so that in itself should give us a sense of not feeling like the only ones! For us in particular however, it is yet again another nature of the beast we LIVE with. Having a routine, being dependable, being consistent, etc. are just not possible for us because FMS refuses to adapt to a routine, to allow us to be well enough to be somewhere or do something as we have planned dependably, or to behave consistently in our body's in order for us to behave consistently in the world.
What can we do about it?
You all know I am all about being real with you; there is no new mega-potion, no magic beans...there is just fibroBASICS.
We have to take care of ourselves in order to optimize our health, minimize our flares, or at the very least, help them not be as bad or last as long.
We have to prioritize what we are going to do, and stick to. We can not allow others to "guilt" us into adding things to our list, using up our limited "good energy".
And when we do get behind from fatigue, fog, pain, anxiety, etc., we have to remember that we are not the only one facing this. It is just the way our minds work! We feel better knowing we are NOT the only one!
The simple incident this morning with the man and his paper reminded me of that. I am not the only one that fibro knocks off track. Those of you who have FMS understand, therefore it is safe for me to begin again, again. Maybe in doing so, I will even inspire some of you to do the same!
Ironically, this post was much longer. However, when I was doing the picture with the story about the man and his paper, something happened at the blog site and I lost everything I had written. Yes, exactly: I had to begin Beginning Again, and Again, and Again...again!
You just cannot make this stuff up folks!
I'll be here all week!
LIVING my fibroLIFE and hoping to help you LIVE yours too!