Fibromyalgia and The Perfect Storm of Hidden Secondary Disabilities

The backhanded gift of living with fibromyalgia for almost two decades has allowed me to develop a primarily positive outlook on what living a good life entails.  That life view altered completely after a rear-end MVA (motor vehicle accident) in 2013 that not only tossed my body around, but ejected my wellness toolkit out of my brain. This last year has been spent trying to reach an acceptance of this perfect storm of hidden disabilities; disabilities that overlap in their symptoms, causing one to activate another.

The MVA injuries I live with include; mTBI (mild cognitive loss; which doesn’t seem mild at all), PTSD, and headaches from a stiff neck. My past years of living well with chronic pain taught me to pay attention to the triggers that made me worse, and helped me feel better. I learned my limits.  I understood that the consquences of pushing through one day meant that the next day would be spent on the couch.  I used journaling, researched books on pain tools, and social media sites that hosted peer groups to better understand my own experience through others experiences. After several years, I was able to craft my own toolkit for my best wellness days, my in-between, and my worst days. Sadly, that toolkit doesn’t work anymore; some pratices still fit but my new disabilities need new, simpler tools. The largest hurdle in this journey is not just the prominent difficulty in having my pain and cognition interfer in researching, but more critically, allowing the acceptance of a lower threshold of living. It’s been overwhelming to embrace this new life path, it feels like giving up.

My original tool kit  was the opposite of giving in to chronic pain.  It allowed me to return to college, then on to university,  a full-time student, who graduated at fifty years of age with a Masters in Social Work from the University of Southern California. It was never easy.  I always hurt, but, I succeeded. I had no idea  that my success was not going to be defined in terms of new career, but instead be defined in how well I would be able to negotiate the perfect storm of cognitive and physical disabilities just a year after graduation. My injuries allow no choice other than letting go of not just a career, but the ability to accomplish most every day activities with any regularity.

Just this past year I made an agreement with myself to accept that most days I will be at home. The cognitive drift (brain fog) inherent in my chronic pain has tripled with the addition of mTBI and PTSD. The fibromyalgia pain is worse. Waking up to more pain each day causes my PTSD trauma anxiety to rise which then triggers my brain to kick into fight or flight mode. This leaves my brain with a limited cognitive process, one that is already comprised by the fibro fog. An alternative route to this same limited cognition is that as my anxiety ramps up, my fibromyalgia pain rises from the fight or flight hormones and my mTBI, always present, leaves me scrambiling to recall, input, or engage in anything more then simple conversations and tasks. With all three constantly present in my daily life, trying to create a new toolkit has been a daunting work, one that will always be in progress. These are all hidden disabilities and as pain peers know, it creates the outward appearance to others that if I’m spending most of my time at home, it should be easy to develop different tactics for daily life.

I spent the first five and half years trying to help others understand why I could not understand the conversation, why I was confused, that I did not remember what happened or the information I was told, why I couldn’t multi-task, why I felt upset, why I always stayed in my home. I no longer engage in this very often. I use that energy to track my pain levels. I research tools used by others with cognitive loss and anxiety. I finally understand my abilities and my limitations. I am almost at peace with my new self.

There are always hidden gifts in change and my latest gifts are beginning to appear. I have the opportunity to explore leaving the city for a life in the country. I have always been a lover of nature and the quiet of being in it full-time helps reduce my anxiety. Reducing constant anxieties lessens my pain thresholds, not enough to join the workforce, but enough to make me feel more confident. With this confidence in place, I have created my toolkit. It’s flexible and ongoing, leaving room to add and discard helping items daily. This is my second gift, and it feels like the best gift.

I have taken my past toolkit, my MSW therapy learning, and new books I’ve skimmed through for my cognition needs and created a basic support plan that I want to share with others. It addresses many different types of disabilities, all of which are inter-related, and is easy to use. I never thought that I would be able to offer others something; it’s been a long journey to offer it to myself. The self validation has been that last piece of acceptance I couldn’t find for so long.

Now, I just need to figure out how to create website where I can share it with my peers,

Lucinda Tart, Pain Peer, Advocate, MSW

New Pathways to Living

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Change in Weather, it’s Fall, Here Comes the Rain and Wind; Adjusting My Goals

Well it’s the time of year I always try not to think about. The temperatures drop, the wind sneaks under my jacket, and water flows from the dark clouds as the barometric pressure drops. Despite keeping up my positive expectations for my life with fibro, the start of this change in our weather patterns brings a sense of fear in. Each year I believe I will do better when it hits, and each year I learn again that this is simply not how my body reacts.

While my body reacts with an increase in my pain levels, my mind  begins the internal struggle of acceptance. I find my thoughts at war.  The flares of pain put me back in bed making one part of my emotions lean towards hopeless. The mindful self jumps in and begins planning how to accept living well doing less. It’s interesting to observe.

I know my friends and family probably feel that I should be used to these increased pain changes and continue to get on with life. I could buy into this belief and get upset with myself, but to what end goal? Being angry at myself only serves to increase my pain by creating additional emotional stress.

Today I am in bed. I am observing these thoughts right now. I am not angry at my pain. Disappointed, yes. Tomorrow I will regroup my plans for my expectations of how much and where I can work, do household chores, and continue my exercise routine (one I just created). Today, I accept the need for rest.

This link to the “Wise Brain Bulletin” is very useful. Especially the Story Shared by Toni Berhard for New Fibro Peers

This site was emailed to me today. It is a all encompassing brain site. It even solicits input from it’s subscribers. And, it is free.

This particular story I linked discusses mindfulness, with a Buddhist slant, however we can all use the idea of being mindful without being a Buddhist. The story can also just be useful as a reminder to stop being so hard on ourselves! I know that I create scenarios that are end-of-the-world all too easily. It takes awareness, which requires me to practice being aware of this state, in order to back off and give myself a break. Not to mention the other persons in this life! Pain tends to create both a stressed out mind and a understanding mind. I often find these sparring with each other in my thoughts.

Being aware, or mindful has really helped me to stop my thoughts from battling it out. It is, and was, a practice that I chose to use.  Mindfulness has become a well researched concept over the last decade. Neuroscience and psychology are using this to understand and assist people in all walks of life. I teach a method of mindful relaxation; a group I developed ten years ago. This excerpt from Toni Berhard’s book is based on her experience of living with chronic pain and illness.

A piece of her story immediately jumped out at me; letting go of being the “title”. I returned to college two years after I began living with fibromyalgia. I spent the next ten years in college and universities achieving my MSW; Child and Family Therapy degree. Before I could begin my career, I was rear-ended at a stop light by a van going 30mph. I was devastated for the first 16 months! All the physical and mental problems this created in body stopped my dream of having a fulfilling career. While those problems are still ongoing, I have once again been given a gift; I slowed down (no option) and am now finding a new way to use all the academic and personal experiences in my own way, my own business. You may also find this comforting. Maybe not now, but down the path of your live lived Well.

Being able to use the tool of letting go of our negative thoughts that assist in reinforcing our worst fears is very useful for me. I hope you find it to be useful as well.

Note: It is a larger download, but a short, informative read. It can always be deleted when finished, or keep it for inspiration.

Lucinda, Fibromyalgia Peer Advocate/Life Coach Advisor

http://www.wisebrain.org/wisebrainbulletin/WBB9.4.pdf