Hello Peers, I have had to struggle with reacting since before living with Fibromyalgia. Lately, my reactions have become more intense. Without details, lots and lots of stressors/triggers, for too…
The last several weeks have had great moments and low days. On my low days, I still feel guilty when I don’t take care of business; like posting in my blog. On days with better moments, I want to take advantage of the positive and don’t post because I am living my life outside of social media. Despite understanding that living well with chronic pain requires a balance, it is still not easy to find. On my low days, I can not do much of anything; feeling guilty only adds pressure to the pain I am experiencing. During my positive moments, focusing on living should be acceptable. So, why do I still fret? I worry because it’s a natural part of being human, amplified by my limits created by living with Fibromyalgia.
These feelings of guilt were much less prevalent a few years ago. With mTBI and the accompanying anxiety and depression that came along with the mental trauma, it has amplified again. I am working on finding my positive again. I believe I am getting there. What I know is true in my situation is allowing myself to “get it together” at the pace that is healthy for me. Letting go of guilt and pressuring myself are the most important health items on my personal agenda right now. Focusing on me will allow me to focus on being a better advocate, creating educational programs for persons like me, and living with positive moments every day, instead of a few times a week.
I have gone through figuring out living well with Fibromyalgia before and I will do it again. I have advocacy skills in my education and in my bones from living it, creating it for myself when there was no other place to turn. I hope that you, my blog followers, relate to this need to spend time with yourself and won’t stop following my blog. You are my inspiration. You help me create my life plan.
During this time, please use the search box to find all my back blogs; there is a lot of useful and simple information contained in this site. I won’t stop blogging, this site is a piece of my positive. I just need to scale back for now.
I found this on my FB page today. I believe that it is an easy read. It addresses issues that we have in our bodies, living with chronic pain, and how simple steps can help change our brain. It may not resolve our pain, but it’s worth breathing.
It is very difficult to accept limits on living your life. I have gone through this process before; during the first three years of my diagnosis of fibromyalgia. These last few years I have had a much harder time. Maybe it is because I am older now. Maybe it is because there are more than limits now. Or maybe I am just not willing to let go of my dream that I spent ten years creating. At the end of the day, none of this matters, I have to accept my new limits and create new strengths.
Just like the first three years of living with this chronic pain, my loved ones are tired of me being limited. They are tired of hearing about it. Tired of watching it and tired of helping me. I can not say I blame them as I am tired of it all as well. The disconnect that worries me the most is that they want me to fix it “now” and I am not capable of spinning a magic spell that will get there tomorrow. I am able to begin to plan steps to follow that will get me there, and, it is time to start.
Sure, they could go on and assist me indefinitely and I could continue to feel guilty and disempowered. But my mental health is on the line now. I need to affirm my new strengths. To start this process I need to know what they are. Just thinking about starting over again in this planning, journaling, and finding the new me is overwhelming. This makes taking even the first step daunting.
As daunting as it may be, I am beginning to take that step. I have begun to reorganize my home life in order to function within better. That is the first and most important step we all can take. Once we are able to feel empowered to handle at least some of our lives in our world, we can begin to find more hidden strengths.
I am beginning to realize that spending those ten years following my passion for social work, to assist persons in physical and mental distress, was not entirely a waste. I may not be able to do all that I learned, heck, I may be only capable of doing a small amount of it, but, I can still do it! I have started here, on this blog. I am beginning to branch out from this blog to more on social media. I have recently thought of what I might be able to create or offer to agencies out in the brick and mortar world.
None of this will occur tomorrow. It might take me a year, it might only be six months. I have put these ideas down in the section of my journal entitled, “Important Thoughts”. I use this journal daily. I will continue to take the time to work on my new strengths and stop focusing on my limits every day. We can all do this, I know we can..
This is a wonderful and short, but complete, video on how to begin creating your own necessary adaptations into your living your new life well with chronic pain. Having worked as an Independent Living Specialist, I applaud this positive and useful way of being creative. Thank you for posting it!
It’s been pouring for five days straight. And, the cold, yuck. Lets just put it out there; my body hates it. My mind goes on “dull”. Any plans I had go right under the covers. I know if I go out, I will pay a price in my pain levels; it’s bad enough inside. My plans inside? They fly under the bed and tend to stay there. Then, I get that depressed feeling.
Today is the fifth day. Today, I am so bored that I have found several small things to take care inside the house. I am going outside to get groceries and dog food. I also need to walk my dog. It’s raining. It’s cold. But there is a limit to how much of this chronic pain, the weather controlling my increased pain, and the sadness of sitting and staring at Netflix or reading a book, that I can handle. My shoulder muscles are “out”; similar to frozen shoulder. My head aches. My neck aches, heck even my bad knee is killing me. All in all, going out is a known negative. But, I am doing it anyway.
I have help, so that is a bonus in grabbing items and having my helper drive. I also know that tomorrow that I have a very important medical appointment. There are times when the dice rolls and I just have to suck it up. This is one of those days. It is also one of those days when I know that just by “doing something, anything”, I will feel more positive than sitting and staring. I can’t always push myself. But, I sure remember to try.
(By the way, I recommend the internet site, Happify. I also recommend the book above in the diagram)
I am flaring today but still thinking a lot about creating a YouTube channel. I went to my old channel and found the link above. I think it gives a you a complete introduction to who I am; in reality, all that I was prior to the MVA in 2013. Still, it gives you, my peers, a chance to view me and to belief in me. Believing in me and my ability to create our YouTube channel and, later, a educational support business for us all, requires a more complete look at who I am and what I have accomplished. There are items left out, like my actual resume, but the passion and advocacy, the ability to create and design programs to assist others is captured in this social media resume. I just move much more slowly these days than I did before 2013, I am sure many of you can relate to this.
More later, once this plume of massive moisture moves away from my state and my body!
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!