Letting Go of This, To Do That

The  last several years I have found myself in the position of saying no to family outings more often than saying yes.  In order to do more each day, or even just the next day, I have had to give up many things that I once loved.  Balancing my life while living with chronic pain, cognitive loss, and anxiety  is an extremely difficult task, but one that is becoming normal for me. It is with great sorrow that I recognize it will never feel totally normal to my family or friends.  Not being able to participate in so many family dinners or cups of coffee with my friends, not to mention canceling these events at the last moment or the day before, creates one of my hardest acceptance struggles; how to continue to show them my appreciation, love, and affection from a distance.

The first five years I spent adjusting to living with my new disabilities, I found myself both apologizing constantly for not participating or pushing myself to participate to not disappoint them. Neither one of these strategies worked for me or them.  Apologizing constantly just kept me swirling in the victim role. Participating despite my multiple issues sent me back into the house and onto the couch or in bed for a period of one day or even a week, clearly that’s not healthy. The readers of my blog know that my goal in living with chronic disabilities is all about living as many best and most positive moments and days that I can. The same readers also know that I, like them,  give up a lot in order to take in a lot. That sounds very contradictory, but, it’s not;  there are certain activities I just can’t do anymore and other activities that I need or want to do.  In order to try and keep this positive balance I invite my family over to my house for dinner, I make several weekly phone calls always ending with “I love you“, I send little social media links to them, and I always reach out and remind them that I am here, I’m just different now and that it’s just another wheel in the circle of life.

My current journey doesn’t allow me to be in places with loud noises, it’s difficult for me to be a passenger in a car driven by someone else, (I frequently curl up into a fetal position, terrified that we’re going to get into an accident when I’m a passenger, this creates a lot of anxiety in the driver and the sorrow of seeing my reaction creates anger (remember that it’s easier to be angry then it is to be sad) in everyone), I’m not able to be spontaneous anymore, everything must be planned at least a day if not a week in advance to help with both my anxiety levels and to plan well my activities leading up to that day in order to, hopefully, have less pain on the day of the event. It’s still really sad for everyone that I’m in a relationship with, (including myself) that I’m so often not capable of simply going to dinner or a sharing our moments of life while going out for a cup of coffee. The balance that I started creating in the sixth year of my new wheel of life is beginning to feel normal to us all now, however, I still sigh, and occasionally cry, tears of sadness as completely accepting this situation is a day to day task.

I can do much less now than I could before when I only lived with the pain and brain fog of fibromyalgia. It can become very tedious living with even less capabilities.  The gift I can give my family and friends in my new life is to not make their life tedious as well. Suffering is optional. That statement is difficult to understand when you are  indeed suffering, but it is my believe that I have the option to cry or sigh, to miss out on that dinner or cup of coffee with a friend but carry-on in the next hour or the next day with life, my life. If that’s the best I can do then I’ll take it, its a lot better then not being alive at all.

Remember to cherish the gifts you get in the moment,

Lucinda Tart, Pain Peer, Advocate for the Positive, MH;MSW

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A Honor I Cherish; it’s the little things

Hi Lucinda,
My name is Anuj Agarwal. I’m Founder of Feedspot.
I would like to personally congratulate you as your blog Living Your New Life with Chronic Pain has been selected by our panelist as one of the Top 50 Fibromyalgia Blogs on the web.
I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 50 Fibromyalgia Blogs on the internet and I’m honored to have you as part of this!
Also, you have the honor of displaying the badge on your blog.
Best wishes,
Anuj Agarwal

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