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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Important Conversation Last Week With my Primary Care Physician and Opioids

http://blogs.fda.gov/fdavoice/index.php/2016/02/changing-course-a-new-approach-to-opioid-pain-medication-at-fda/

My treatments for chronic pain are changing. This is a personal decision I chose after several years of thought and a trial run varied products in the Medical Marijuana dispensaries. Every person who lives with constant pain must decide their own paths, we are each unique with unique pain patterns and life styles. Previously, I have tried the SSRI’s, the anti-seizure meds, and over-the-counter medications. They all failed to work for me. Either they didn’t touch my pain or they fogged up my brain more than it already gets fogged. I have been left with opioid use. Opioid use as prescribed is still very hard on our entire system and causes physical dependency. This creates a slight need to increase the dosage every few years to achieve the same relief.

In order to address my overall health and decrease my dosage, I began trying CBD first, then added in a low dose of THC at night and during flares. After doing this for the last three months, I am seeing a decrease in my opioids; not dramatic but by two pills on “normal” days and more on flare days! I blog about honest relationships and taking personal responsibility with your doctor. Last week, I informed my PCP about my use and my intention to radically decrease my opioid use over a period of several months.

He was completely supportive. He believes medical marijuana has many cross modalities benefits in pain control and much less toxic effects on our system. During this discussion he informed me that the FDA will be radically changing who is allowed opioids and who can prescribe it. This will occur within five years.

I feel that this is not common knowledge in our population and decided to inform my peers. I also decided to be transparent about my decisions in pain treatment. It won’t fit for everyone, it’s not simple for me! THC knocks me out cold, meaning it’s not an option if I go out or need to work. It could adversely effect me in job searches or closing a job offer. For me, natural, less toxic, pain relief is the first step to living better, the rest will sort itself out.

Please read, and research further, the above link.

 

 

Accepting my Limits, Creating New Strengths

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..

Yes, People with Chronic Pain/Fibromyalgia do Work

new good spirits
new good spirits

working and firbo assistinng huricane katrina survivorsWorking while surviving and planning to live Well with Fibromyalgia is not uncommon. I have worked, volunteered during Hurricane Katrina, spent 8 years in college and then two years in graduate school. During those last two years, I interned 24 hours a week; with a full schedule at the university. I was in pain and many days it was a struggle. Once every other month I had to call in and tell them I was unable to come in as my pain level had increased. Usually, I was able to cover most of the work from home, otherwise I completed  the next day. It was an interesting experience to work with my fibromyalgia syndrome; in many ways.

I never had a supervisor or coworker come right out and tell me that I was incapable of performing my job duties. I am actually a very competent worker, or was then. Most coworkers were considerate about my pain syndrome, but, there were always the few who I just knew looked at me sideways. I choose to ignore them as simply being ignorant of my situation. Better than that was doing this;  if the opportunity came up, I would spend a few minutes in conversation with the person, discussing what it felt like to be in my body. I let go of their internal reactions. Afterall, this was not my personal issue and didn’t serve any positive purpose for me.

I am not currently working but I would prefer it. I found out that I did better when I was out among people. When I moved my body and mind from task to task. I definitely paid for it some days! I have often pondered why working and studying so hard helped me with my pain levels. I have come to the conclusion that my serotonin and endorphin levels had a greater output. Why? Because, I was happy, I was exercising, I was using my brain to focus on others and other things. I was not giving it the time to focus on my pain.

This has taught me a lesson that I keep close to my heart; keep as busy as I can. My busy today doesn’t come close to the busy then, but it still accomplishes some of that distraction that I used to experience. I know we all get angry at our doctors and family who tell us to stay busy. I did and do, don’t get me wrong. However, it turns out they are correct, at least for me. On the days when I flare beyond my endurance to get up and move my focus is all on my pain. There is no joy, no tasks, no focus on something besides me which stops those all important  neurotransmitters from firing as well.

I am not writing this to chastise those of us who can no longer work. I am remembering that it can be better than just staying home. Work is a subjective idea. I try to work on my blog and other plans every day at home. I stay busy with odd, small and quick jobs in the house. I pick one larger chore each week and focus on it for an hour. Keeping an organized, and same plan in place for what needs to be done each day also allows me to look forward and know where, and if, I can do outside of the home activities or maybe just spending time drawing for a half hour.

I have spent today engaged in a few small tasks, like this blog, responding to Peers on forums and blogs, submitting a page for publication (it was already complete) and know I am going to work on a my once a week large project. I am going to go do this, despite feeling like a large flare is coming on; perhaps if I get going with it, my pain levels will decrease. Perhaps not. But, for me, it is worth trying.

If you missed my organization tips for a binder or a daily reminder book, or just handling your chores, use the search box. Wishing you all the best in whatever efforts you can handle today.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

When Working Outside of Your Home Becomes Difficult to Impossible; Alternatives

Good Evening Peers

I got up early this morning and instead of staying at home and trying to complete my usual routine around the home, I went out. It was exhausting and my pain is increased but what a lovely, sunny, fall day.  I spend most of my days inside my home and have developed a routine that allows me to remember most, not all, of the basic things chores I can tackle in bits and pieces. I try to add in an additional, necessary item when I am not having more than a medium pain filled day. This extra item gets accomplished maybe three days out of seven. Since I have not been able to work for the last two years due to increased fibromyalgia pain and other health issues from being rear-ended, I view my daily in-home routine as my work.

I am not alone in creating a feeling of pride and self esteem by being an at home, unpaid worker. I am involved with forums where many are stay at home workers. My routine is the same but I vary how I accomplish every day. This may be based on pain or my choice of tackiling a bigger chore that must get done. Even though I break up what is most important into 15 minute increments, rest, 15 minutes or more, do it again until completed, it doesn’t always get finished. A example is; I may only get half a dishpan of dishes washed. Another is; I might get the new roll of toilet paper out but I don’t get around to putting it on the holder. But, that is ok. I did do something necessary for myself.

I might have to add into my routine a small load of laundry as the big chore on Monday. Then a flare of pain hits me and instead of washing and drying it that day, I just take it downstairs and empty it into the washing machine to wait until next day. No matter what my pain level is I try to always spend 20 minutes to fluff the comforter over the bed, throw away any left out garbage from dinner the night before, put items in the inside containers for recycling, hang up my pj’s, pick up the living room table and maybe do a quick Swiffer of the floor. Whatever it is that is gentle on my body while also being simple and fast. Keeping a clean and organized home is my job right now. It helps me to not become overloaded with so many chores that I can’t even get started! A big bonus is that I feel a sense of pride, just like I would at a job outside the home.

When I have worked outside the home, I broke up my daily required tasks into manageable items. Filing was always a daily need. I knew that bending or stooping was best done in the mornings to avoid aggravating my pain. I created a system where the papers that had to be filed that day where in a stack, organized by topic, and once every few hours I tackled the pile for 10 minutes. Those that could wait were left in the “to do” box for the next morning when I came in. I broke up writing my clinical notes with phone calls to clients, meet with client then worked on the outline for next weeks group, this allowed my body use different muscle areas; assisting in not overworking one area. At some of my jobs when those really bad pain days flared up, I was allowed to work from home; calling clients, setting up future appointments and updating clinical notes or powerpoint shows for groups, write my column for the newsletter and other computer work. This was wonderful. I was able to stay in comfortable clothes, sit in my cozy armchair or prop myself up in bed with pillows and a laptop.

For many there is now the option to “telecommute”.  Many of us have to work. If your career has this level of security and capabilities perhaps this is a option you could discuss with your employer. Depending on your company and your relationship with your supervisor you could schedule a meeting with them to discuss this. I suggest writing out the plan before even scheduling the meeting. After it’s scheduled go back over the plan and make revisions.

It is always a balancing act to juggle income needs with your fibromyalgia pain. Add to this your family and maybe children, plus household chores and here comes total overwhelm! Even though you feel that working outside of the home has become increasingly difficult and some days virtually impossible, you just don’t feel like giving up. Or, as discussed, you can’t go without the income. If this is you start paying attention to what you can change. This change can be at your current job or by changing jobs.

Make a list. Begin researching other jobs that match your skill set and also matches your pain needs. Join some online forums and discover what other Peers are doing for work. Perhaps you can cut back to 30 hours or even go to half-time. If your a perfectionist, consider letting things go; at work or home.

For your home life you could begin setting aside a small amount of money every week and hire a local student to come into your home once a week or biweekly to tackle those big cleaning jobs. Consider having groceries delivered from a local store or through an online site. Begin selecting simpler meals that you can cook in a crockpot, or leave cooking on stove for a few hours over the weekend. Make enough for at least two days so you can put it in covered containers or freeze. Premade, healthy snack foods can create easy and nutrious lunch.

There are numerous alternatives to creating a more pain friendly environment, at work and at home. Every little Well living change makes a difference in your pain or in your self esteem. Never forget that our pride is in our ability to do even the most basic items. Try not to let those voices of negativity into your thoughts, those voices only create loops of shame and guilt; maybe even some tears.

Heading for my fluffy comforter,

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach