My first reaction to my diagnosis was, “no, I don’t! Don’t put that in my medical chart!!!”. I had been to a large number of different types of specialists over the two years since I first began experiencing unrelenting, all over (most prominent in my upper back, arms, neck, shoulders, and head) body pain, searching for an answer that would “cure” me. I had researched this type of pain and knew what fibromyalgia was, I knew that there was no cure. My reaction above was about denial and bargaining.
This is a typical reaction even if we feel relief at being able to put a name to our pain. It falls smack into the stages of the grieving process. Living with a chronic and debilitating medical issue is just as disturbing to our psychological balance as death or divorce. I wanted to bargain this diagnosis away; in desperation, I really believed that if I told my doctor not to put it in my medical chart, a) he wouldn’t, and b) it was not true. It was duly noted in my chart and it was and is, my medical issue, like it or not.
I spent months spinning my mind uselessly in how to change what had taken over my life. At the same time, I was still happy to have that name to the pain. The two do not exclude each other, they join forces. The problem is that they are opposites feelings at war in our psyche. Now we have unrelenting pain, huge lifestyle changes that are affecting not just us but our families and friends, and a tug of war that now is generating havoc in our psychological world. Shouldering all of this at once eventually leads us to the next step in the grief cycle, grieving.
After my diagnosis, that was it. My general care practitioner began prescribing pain meds every month, actually this was already occurring, but now the medication plan was increased and altered based on the “word” fibromyalgia. I began what has so far been 16 years of monthly visits to my PCP to discuss how my pain levels are that/this month and to obtain prescriptions. What was not offered was any type of educational or therapy program. At one of the worst times in my life, there was nowhere to turn but a few groups on the internet who supported each other without necessarily having any other items in common. This lack of support from our medical system still irritates me.
I began this blog with this lack of education or support in mind. A place where my peers can come and find information. Information they can use, or not, but at least look for pieces of their puzzling new life and perhaps come away with a path through the maze. This blog will always be here, as long as I am still able to type and brain fog doesn’t completely take over. I began this site after becoming even more disabled with increased fibro, incredible knee pain and mental health issues from a MVA where my car was hit from behind while stopped at a red light. I have mild to moderate TBI and at times it takes me more than two hours to post a short blog; thinking, or cognition, is difficult as pieces of my memory, words, and fatigue are tripled when now combined with fibro fog days.
I am going to slowly start a few new places for peers to understand what the grief process is, what new life changes they need, how to address activities of daily living to their pain levels, obtain support from a professional, and from their peers in a direct manner; not an anonymous facebook page or posting site. First, I am going to ask you, my peers to create videos of your experience. I will post the guidelines later. These videos will be an online, video newspaper for us to turn to. Each month there will be monthly topics with actual faces talking to us all. Second, I am starting a sliding fee fibromyalgia and chronic pain group series online.
I have a degree in Child and Family Therapy as a Master in Social Work. I am unable to work at a traditional job but my advocacy skills, ability to format a series of psychoeducational live, or webinar, classes, is still something I can complete and offer. If our medical system isn’t offering us this help, then I will. It will take longer to create due to my TBI, but this is my goal for us. A place where we don’t have to figure it out alone. A place where you start at A and continue to F. Handouts, knowledgable research, homework, support. This feels so right to me.
What I need from you, my peers, is belief in me. Just as I believe in you. Look for my next post to be about emailing me videos with monthly topics, a new YouTube site that will be open only to those of you who email me and request to be added to the list as it will be private. Why? I want to design a place that is just for us. Videos of our peers discussing their various steps, or back steps, or just their pain, is a big step. It is necessary that we all feel safe and not censored. I have been following, and have submitted several blog posts, to a new social media site focused on various medical conditions. I applaud their efforts and am very excited to see this new type of advocacy being made available to us! The one item I don’t like is that it is formatted in a specific and shortened version to portray a newspaper online. This leaves out many things a peer who can not write in their format, may wish or need to say out loud. Thus, my desire to create a place where editing my peers voices is not done; only topics each month for the sake of clarity due to brain fog and seeking specific information in that moment.
I am excited about these new endeavors and hope you are as well. Moving forward, there will be a link to my business in a few months as well. I no longer want to watch myself and my peers swim alone in body and mind pain. We can work together at this!