Well… here I am! Mostly unscathed, and without a shred of doubt in my mind more alive than I have ever been! I’ve survived the year that should have broke me. Now I get to choose to not live most of my days from my bed anymore.
It has been just under a year since I found that quote. Every single time I thought that I couldn’t do something, really couldn’t do something I used this quote as motivation. When things were too hard to do for myself, I literally used this quote to motivate me for the sake of others if not for myself, and for reasons I would later discover-this helped me, a whole bunch, as the rest of the work of Dr. Brene Brown tends to do in my life.
This blog was born of my desire to help and my desire to heal myself while I wait for the medical system to call my number. I want my story to help anyone it can, in as many ways as possible. I want people to make their own connections between mental and physical health; especially if they are stuck with being chronically labeled as ill. I am so thrilled to have so much information and solid medical research to lead people back to.
Today I know that I have what is called Centralized Sensitization Syndrome, as well as a structural abnormality of my uterus, adenoids in the uterine lining and some scar tissue damage from surgery to my uterus that all cause physical pain.
I also know NOW, that it is possible for your body to create pain and sensations that have no physical reason to be there- and I know how and why this happens. I also know that it is a Syndrome, which is a group of symptoms, and symptoms are curable individually- when addressed after ruling out any reason for an “actual” symptom.
During the months of trauma, agony, torture of a physical time-out from my life I decided that I was GOING to find a way out of my fucking bed… if it killed me trying! I decided in my mind that this time- I wasn’t going to quit…. because I had decided that I wanted my life back now, or as close to now as possible.
Preceding my abrupt grounding to my bed I felt as though I was living my dream life. And as far as that vision board I created in the 8th grade was concerned- I had everything but a fucking willow tree that I had hoped for for my life. Amazing husband who loves his family and values traditions, we owned our first home in our twenties. We both had successful jobs. Life really was pretty good, not bad.
I have an amazing husband, we have been together a long time- we are the real deal. We do the things that couples “can’t” do. We get after our goals TOGETHER. We are great parents together and we share the same values. Our children are healthy and vibrant, they are growing and teaching us how to be better everyday as we strive individually and together to be the best parents we can be. I am really proud of us as a couple, as parents and as individuals. I have really found gratitude for the fact that my husband really does value what it means to love someone in sickness and in health… and, what we don’t know, we have committed to learning together and that is unconditional love.
We were part of a community of friends, we deemed ourselves a village. We pride ourselves on being supportive and living a village style life where we are all able to come together as individuals, and as who we truly are. OUR VILLAGE could handle anything. The women of the village are warriors, we carried each other through life’s hardest shit. Terrible things that are not fair in life, those curve balls that are more than just curve balls; the things you have to grieve, the things that are so new and challenging and scary that you need a pep talk for. The village is where we bared our realest selves. Those are the people that were in my village. We, at the core, were all just imperfect people, trying to be as happy as we can, as often as possible, together and for each other. Supporting each other through the challenges that life throws at us. Other people look into our village of support and are envious of the support we offered each other, unconditionally.
As a bonus, I had finally landed my Executive Assistant Role that I had been looking for, it met my needs for purpose in all of the ways that I requested it to when I met with the temp agency a year prior, with my list of parameters for the perfect job. Salary, location, benefits and not for profit style work. All boxes checked.
My life literally couldn’t have gotten any better in those moments. I mean, I was struggling to find the mystery medical issue- but I didn’t think that it actually had any real affect on how I was performing or showing up in my life because I really had created my own version of “perfection”. I really did feel like I had it all .
My body decided it was not going to cooperate with my vision board plans. I was forcibly removed from my life and sentenced to time in bed. For some that sounds like a walk in the park, a piece of cake, so many people literally told me how lucky I was to be “able” to take this time, like somehow I was given a choice in the matter.
Medically unable to return to work is not something that I ever thought that I would be associated with, and for anxiety none the less- I AM FAR TOO IN CONTROL TO HAVE ANXIETY!!! I was shocked- stunned and ashamed for a hot second (okay, like a few months).
I am fortunate to have been given the opportunity to actually take the time that I need. I am fortunate to have the advantages that I have in my emotional intelligence. For me, this downtime was like a prison sentence, a sentence to isolation and confinement- but I used it well and I have come a long way.
There is a quote that I read that resonated with me when I found myself obsessively looking for solutions to my problem of being stuck in bed. It said this:
“If you don’t make time for your wellness you will be forced to make time for your illness”.-unknown, found on The Mighty via Pinterest
This quote means many things to me. As a person who literally felt forced to take a real hard look at what was happening in my life, and determine how I can have an impact on the outcome. I applied all of the skills that I have to figuring out exactly what is wrong with my body.
I made it my mission to get out of my bed, and back into my life- and those who know me in real life know that I don’t beat around the bush when I am passionate about something. I am strong willed and ultra stubborn- and I have a passion for making things faster and more efficient. I love expedition. I thrive in fast paced environments where I am able to be creative and have a meaningful purpose. Bed is not the place that I feel accomplished or worthy- it was like a punishment that I didn’t feel I deserved.
When I found myself in my bed and found that showering was enough to suck all of the energy from my body, my pride hurt, I was ashamed of myself for not being able to do it all, and under all of that- I was terrified. Absolute terror.Living in fear of dying or having something very seriously wrong and ashamed that I couldn’t even keep it all together and be an adult that doesn’t rely on others.
I couldn’t go to work at first, and it progressed really quickly to me not being able to get out of bed most of the day, and my once monthly cycle pain and agony would let up for only a few days a month. I felt broken, and was hormonal yo-yo-ing to my rock bottom emotionally as I struggled to survive my life, and tried to do it all myself so tired of feeling like a burden.
Negative thought patterns that I have from early in my life, comparisons about my body- that shame feeling… it came flooding back to me in full force. The things I was saying to myself were cruel. The self-doubt and self loathing that came with chronic illness for me and the patterns that we discovered later, are actually very common in people with trauma experiences.
Through all of the awkwardly less than perfect and often unpretty parts of myself I waded. I sifted through myself. I found all of the ugly and I looked at it all square in the face literally vibrating at my very core with fear I stared into myself to find out WHY. I learned why, and I learned how and then I found gratitude for it all!
My life, and ultimately the perceptions that I held for myself had created situations that seemed to be out of my control. Medically/ physically I was succumbing to being in bed and not physically being capable of being even present in my life; I was chained to my bed and the exhaustion of chronic fatigue and the relentless cycle that is the chronic illness internal battle of being capable and worthy of the life I wanted, verses being a huge burden and having everyone in your life standing by with their impatient comments about how they “miss old you”, or “you really should get over this- you are going to have your kids taken away”, they “really want old me back”.
I was simultaneously working at accelerated rate to find out what was wrong with me medically for some answer to what was going on, later to be deemed my “diagnosis of the week theory”. Scrambling for my own answers so that we could all stop talking about it alreaddddyyyyy, is truly how “over it” everyone in my life who was supporting me was behaving towards me. Annoyed that I was taking so long to get out of it or somehow not sick acting enough to be deemed actually sick, and judging me for not taking medications.
The reality is that once I had the real diagnosis- It changed my life. Apparently people noticed, but attributed it to me being mentally unwell rather than in a growth pattern.
I had been quietly spending my time-out from my life cultivating motivation and success for myself. I was learning about self help and making applications in my life every single day. I went to therapy. I applied methods in my everyday life that made an impact, and I kept doing them. I cultivated my own motivation for the first time in a long time- and from my bed I decided I would have my surgery and I would surf at the end of it all in Tofino as we celebrated a dear friend turning 40. I decided I could surf, and I did! Fuck yes I did!! I was bed ridden until July 10th 2019 and I surfed the beach of Tofino British Columbia (see above photo for a Tofino memory) at the end of September 2019. I was back Baby, mama was back!!!
As the fall turned to winter I continued on my journey and learned more about self-help coaching, and even had the opportunity to daydream of some big-big plans. I learned so much, and I am so happy that I used the time so wisely. Having the knowledge that I possess as the world crumbled around me kept me together, quite literally. I am so sure of my own body with what I know- that I know my diagnosis to be truth. I also have experienced doctors/ psychiatrists NOT UNDERSTANDING my condition even as much as I did weeks after I received it. So I really shouldn’t have expected the people around me to fully understand it like I did. They were just words to them… they are the key to MY life, but just words to them.
I lost our village in the journey to myself. The people that surround me; although their intentions are with “love”-people have a default tendency to simply chose to be dismissive, rather than admitting and being accountable for their behaviors, especially when they have acted in ways that they themselves are not proud of.
What I discovered with my diagnosis of Centralized Sensitization Syndrome is that there is a direct correlation between physical and mental health, and that science and technology are actually in a place where the two fields that were traditionally very segregated and individualized are now identifying that mental health and chronic symptomatic pain are actually part of the same cycle, and you can not manage one without actually addressing the other.
Being well for me today means that I have to manage my whole health. Mental health and physical health together, on purpose.
The biggest lesson from my journey is that the stigma of mental illness does NOT go away with a fundraiser and a few t shirts on a particular day. The stigma survives in individual ignorance, even in my life, even in 2020.
Mental Health is part of everyone’s life, unless of course, you are one of those extra special humans that don’t have a brain.