Have
you ever had an experience where your brain tells your body to do one thing and
it does another? Or maybe it ignores you all together. I find it annoying when my body and brain decide not to work together, it puts a kink in my days plans and makes me feel a little like I am losing my mind.
What annoys me even more is being treated like a child or less then when my body is unable to function like it used to. God bless my husband, I know he means well, however trying to understand this insidious condition takes more than trying to get it out of me during one of my flare ups. The doctors like to call it fibromyalgia, me I have a hundred different words I call it depending on my mood. At the same time, I do my best not to give it to much attention, it is not my friend so I try to keep it that way.
My encouragement to anyone with a spouse, family member or friend with this chronic condition is not to try to "figure it out" in the middle of their flare ups. Instead, wait until the storm of pain, pressure, fire and whatever other descriptive words you could come up with in regards to what you my witness, has passed and than in the calmness of the storm go for it. Learn to ask good questions, take notes, take directions, take feedback but do not, whatever you do, give directions without putting in the time to understand where your loved one and their chronic pain is coming from.
I say, seriously, would I/we pick this God forsaken invisible unwanted houseguest to be the center of our attention? Simple answer, "hell no!" Most day’s people have no idea I deal with such an aliment not because I am in denial but rather because I refuse to give it to much credit or too much attention. The attention is usually drawn out by well-meaning loved ones who have not done their own research and choose out of all times to pick a battle in the middle of a flare up, a moment of a fibro fog or a day of feeling disconnected from my body and brain, then I am not equipped to respond adequately to the questions coming my way or even the responses my loved ones deserve and I want to give. Honestly this condition has a personality of it's own. Not an excuse but and explanation.
What annoys me even more is being treated like a child or less then when my body is unable to function like it used to. God bless my husband, I know he means well, however trying to understand this insidious condition takes more than trying to get it out of me during one of my flare ups. The doctors like to call it fibromyalgia, me I have a hundred different words I call it depending on my mood. At the same time, I do my best not to give it to much attention, it is not my friend so I try to keep it that way.
My encouragement to anyone with a spouse, family member or friend with this chronic condition is not to try to "figure it out" in the middle of their flare ups. Instead, wait until the storm of pain, pressure, fire and whatever other descriptive words you could come up with in regards to what you my witness, has passed and than in the calmness of the storm go for it. Learn to ask good questions, take notes, take directions, take feedback but do not, whatever you do, give directions without putting in the time to understand where your loved one and their chronic pain is coming from.
I say, seriously, would I/we pick this God forsaken invisible unwanted houseguest to be the center of our attention? Simple answer, "hell no!" Most day’s people have no idea I deal with such an aliment not because I am in denial but rather because I refuse to give it to much credit or too much attention. The attention is usually drawn out by well-meaning loved ones who have not done their own research and choose out of all times to pick a battle in the middle of a flare up, a moment of a fibro fog or a day of feeling disconnected from my body and brain, then I am not equipped to respond adequately to the questions coming my way or even the responses my loved ones deserve and I want to give. Honestly this condition has a personality of it's own. Not an excuse but and explanation.
As a woman of faith I do believe that all things are possible through Christ but I also believe that he has given us bodies that can break and do break and that we are not perfect. I wish I could respond in away that may appear more loving and caring at times but the pain will speak on it's own even when I try to apply self-control and discipline, which are the fruit of the sprit, does that make me less of a believer, nope, just more human. Thank you Jesus for loving me anyway.
In the middle of my flare ups I have to remind my husband that I am not a child nor am I mentally incapable, what I am is 100%exhausted from the beast of this syndrome that chooses to come and go as it pleases. I have learned to deal with the pain through rest, prayer, meditation and medication but the reality is that the depression is what seems to kick me hardest in the ass. The kind of depression that steals my joy, robs me of my supposed purpose and tries to get me to believe others would be better off without me. Intellectually I know this is not true, physically though it is a whole different story.
Today my story is that I am in my third week of a flare up, one of the longest I have had in over two years. I have done some mighty fine self-care work if I do say so myself. I had to be tough with the one I love the most and remind him about what I am dealing with, what we are dealing with. I had to remind him that not only am I not looking for self-pity but that pity just perpetuated the pain anyway.
In the middle of my flare ups I have to remind my husband that I am not a child nor am I mentally incapable, what I am is 100%exhausted from the beast of this syndrome that chooses to come and go as it pleases. I have learned to deal with the pain through rest, prayer, meditation and medication but the reality is that the depression is what seems to kick me hardest in the ass. The kind of depression that steals my joy, robs me of my supposed purpose and tries to get me to believe others would be better off without me. Intellectually I know this is not true, physically though it is a whole different story.
Today my story is that I am in my third week of a flare up, one of the longest I have had in over two years. I have done some mighty fine self-care work if I do say so myself. I had to be tough with the one I love the most and remind him about what I am dealing with, what we are dealing with. I had to remind him that not only am I not looking for self-pity but that pity just perpetuated the pain anyway.
I can start a conversation off at a 9 out of 10 in pain and end at a 3. Somehow we can find just the mere fact we are still alive funny, plus all the silly stories in between the aches and pains. Gosh I miss that girl! The truth is, the brain can only focus on one thing at a time and I find funny a great place to focus. Even though there is nothing funny about Fibroblahblahblahblah, funny things do happen because of it and being able to share with someone who gets it is a pain reliever at it's best. My sister Michelle is like a shot of pure morphine to the veins when it comes to making me laugh.
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| Caught in the act, we could not stop laughing! |
I miss her smile, the sound of her voice and the chuckle of her cheeks when she finds the funny in the ordinary moments of life. I do not claim for one moment to understand why God allows some of us to suffer more than others but what I do know is that He has placed some amazingly beautiful people along my path to help me make it through those moments when I feel like folding in the towel and throwing up the white flag and calling it quits. So, even though I hate when my body and brain will not work together, I am thankful beyond words for those who help me find my voice in the middle of my pain. To you my dear sister thank you for being one of them, I love you to the sky and back and even more.
Cris
Crisnole@hotmail.com
1 comment:
What a way to Glorify God with your written words.
I will have to piggy back your comment about Michelle, a shot of belly rolling just when I need it.
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