breaking the silence...
This past week I was talking with an acquaintance who wanted to know how I deal with many aspects of my life. I noticed at the end of the evening, as I reviewed the conversation in my head, that I reffered several times to the fact that " the people that have come into my life, in such a close and personal nature, have perhaps been gifted to me for a reason. Perhaps the universe, in what ever cosmic name you wish to give it, has seen down the road and know that I will need a very solid support network not just now but in the long term as I face the challenges and limitations I have."
I never seem to give more details than that. Perhaps some vague statements of " a rough patch" or " meh, high pain day." before chuckling, shrugging and changing the subject.
One of the challenges of talking about this subject is that it very quickly can turn into what sounds like whining. I don't support, tollerate or endure Whining with any kind of grace. Thus, I try to avoid it in myself. The mention of physical limitations, ailments and other personal woes, also soon turns into pissing contests and open invitations to compare notes on bunions, intestinal ailments and last week's flu details that I have NO desire to hear about in others. I have three children that I am obligated to get into such details and concerns with that tends to be a rather steady concern. I have No desire to hear about other adult's such body functions. I respect that people have NO desire to hear about mine.
I am also a vain and proud bitch. I have no desire to be seen as faliable or human but realise that it can't be avoided. I would prefer to not accelerate that decline by adding " disabled" or " ailing" or " suffering" to that. I also will do all in my power to not enable profiling or labeling.
I mentioned earlier this week in a post that I have B.O.B. . While I would like to make light of the acronym, ( perhaps boughts of broken, bad one building, or some other sillyness) the truth of it is written in black and white on Wikipedia,
_______________________________________________________________________
Fibromyalgia, meaning muscle and connective tissue pain is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch .
Other core features of the disorder include;
* debilitating fatigue
* sleep disturbance
* joint stiffness.
In addition a range of other symptoms that involve multiple body systems including;
* difficulty with swallowing
* functional bowel and bladder abnormalities
* difficulty breathing
* diffuse sensations of numbness and tingling
* abnormal motor activity
* cognitive dysfunction
* An increased prevalence of affective and anxiety-related symptoms is also well known.
Fibromyalgia is considered a controversial diagnosis, with some [arguing] that the disorder is a ‘non-disease’, due in part to a lack of objective laboratory tests or medical imaging studies to confirm the diagnosis. ... evidence from research conducted in the last three decades has revealed abnormalities within the central nervous system affecting brain regions that may be linked both to clinical symptoms and research phenomena.
Although there is as yet no generally accepted cure for fibromyalgia, there are treatments that have been demonstrated by controlled clinical trials to be effective in reducing symptoms, including medications, patient education, exercise and behavioral interventions.
_________________________________________________________________________________.
So why speak up now? Well, because it is 1:30 in the morning on a " high pain night" and I am needing to feel like I am doing something about this. That I (and this) are not invisible. That, while my situation is unique and challenging, I am not alone to deal with it anymore.
Up until now I have ensured that is the case by downplaying, hiding and often blatantly lying to cover up the impact this has on my life and me. I am not being fair to those that love me... and to the contribution to my daily life that they bring.
This is a huge part of my everyday life. I need to accept it. It is for life.
I never seem to give more details than that. Perhaps some vague statements of " a rough patch" or " meh, high pain day." before chuckling, shrugging and changing the subject.
One of the challenges of talking about this subject is that it very quickly can turn into what sounds like whining. I don't support, tollerate or endure Whining with any kind of grace. Thus, I try to avoid it in myself. The mention of physical limitations, ailments and other personal woes, also soon turns into pissing contests and open invitations to compare notes on bunions, intestinal ailments and last week's flu details that I have NO desire to hear about in others. I have three children that I am obligated to get into such details and concerns with that tends to be a rather steady concern. I have No desire to hear about other adult's such body functions. I respect that people have NO desire to hear about mine.
I am also a vain and proud bitch. I have no desire to be seen as faliable or human but realise that it can't be avoided. I would prefer to not accelerate that decline by adding " disabled" or " ailing" or " suffering" to that. I also will do all in my power to not enable profiling or labeling.
I mentioned earlier this week in a post that I have B.O.B. . While I would like to make light of the acronym, ( perhaps boughts of broken, bad one building, or some other sillyness) the truth of it is written in black and white on Wikipedia,
_______________________________________________________________________
Fibromyalgia, meaning muscle and connective tissue pain is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch .
Other core features of the disorder include;
* debilitating fatigue
* sleep disturbance
* joint stiffness.
In addition a range of other symptoms that involve multiple body systems including;
* difficulty with swallowing
* functional bowel and bladder abnormalities
* difficulty breathing
* diffuse sensations of numbness and tingling
* abnormal motor activity
* cognitive dysfunction
* An increased prevalence of affective and anxiety-related symptoms is also well known.
Fibromyalgia is considered a controversial diagnosis, with some [arguing] that the disorder is a ‘non-disease’, due in part to a lack of objective laboratory tests or medical imaging studies to confirm the diagnosis. ... evidence from research conducted in the last three decades has revealed abnormalities within the central nervous system affecting brain regions that may be linked both to clinical symptoms and research phenomena.
Although there is as yet no generally accepted cure for fibromyalgia, there are treatments that have been demonstrated by controlled clinical trials to be effective in reducing symptoms, including medications, patient education, exercise and behavioral interventions.
_________________________________________________________________________________.
So why speak up now? Well, because it is 1:30 in the morning on a " high pain night" and I am needing to feel like I am doing something about this. That I (and this) are not invisible. That, while my situation is unique and challenging, I am not alone to deal with it anymore.
Up until now I have ensured that is the case by downplaying, hiding and often blatantly lying to cover up the impact this has on my life and me. I am not being fair to those that love me... and to the contribution to my daily life that they bring.
This is a huge part of my everyday life. I need to accept it. It is for life.