My journey living with CRPS/RSD for over 25 years has taken me through many challenges, mostly on a daily basis. The first “Share Your Story” I ever wrote was titled “Thinking Outside the Box“ with the intention that I was always moving towards wellness.

But I have become extremely neuro hyper sensitive and it is very complex!  While working for greater balance and stability in my life, I have always been an advocate to help raise awareness of CRPS. At the same time, I have been guided by some gifted practitioners to become more self-reliant and use my own intuition about my body and its responses.

These practitioners are compassionate and able to think outside the box with me. Having a hammock of support is essential as CRPS is not just a chronic illness, it is a revolving, life-altering daily experience.

As time moves on, my well-being continues to be unpredictable. I can sense the disappointment (or resentment), judgements and complete misunderstanding from people at times.

I’ve learned that life’s greatest gifts are love, acceptance and non-judgment. My self-care is a priority, but as my energy and health issues shift, so does my ability to interact socially. What comes with that is isolation, loneliness and self-doubt, so I try to protect myself with safe boundaries.

When I am able to talk or spend time with family members and they share their daily life experiences with me, that brings comfort and joy. The more you know the more you grow – that’s a bridge to a way to stay connected.

I continue to focus on what I am comfortable doing in the present. Meditation and mindfulness have helped create a deeper connection within and something I practice daily.  Sound bath healing music, connecting with nature and scents of essential oils are some of the things that balance my sensory system. They’re distractions that are uplifting and what I am drawn to.

It feels like I’ve been in a time capsule while trying to balance my abilities to function. I try to choose what is in my highest and best interest because my sympathetic nervous system is so over-reactive. In the last year, as stated above, there has been a huge shift in my neuro sensory ability to function. You don’t expect this to suddenly occur, and it seems like the aging process decided to tag along too!

I have always tried to go with the flow, to be extremely patient while spending a tremendous amount of time on my well-being. This has come with a lot of sacrifices.

Not feeling comfortable with the unstableness that has settled in, I hibernate and self-soothe to help preserve my energy. There is a sense that life is passing me by, but as my father used to say, “With the good Lord willing, I’ll be around for a while longer.”

So my mantra is to feel safe, comfortable and functional as I am uniquely me!