It’s been a year since I was given the answer to the question I had been asking.
365 days since I found out exactly what I was up against.
A year since I learned the name of the thing that tries every single day to take my life by taking my health.
A diagnosis may not seem like much, after all it is just a few words.
Mine was :Centralized Sensitization Syndrome- a disorder created and rooted in unresolved or ongoing traumas; causing adrenal functioning chaos in the central nervous system, as well as PTSD symptoms as a mental side effect.
Receiving the information gave me a gift, an invisible one, but one that I wouldn’t have been able to survive this journey without. I would still be searching for the answer to “what is happening to me?”
It gave me understanding, it gave me direction, it gave me hope. I am curable!
An understanding of the past present and future possibilities, both good and bad. Knowing my diagnosis allowed me, for the first time, to comprehend how I would obtain either of the future possibilities. It opened my awareness to choice and intention.
From my diagnosis I was able to stop frantically searching and start doing “the work” all because I wasn’t consumed with looking for an answer anymore.
I could now implement change by utilizing the appropriate knowledge I had acquired about my conditions.
I say using the appropriate knowledge because with my type of condition while you are piecing together everything, if you don’t know to protect your body and adrenal glands- you will end up chasing symptoms of your disease in addition to the symptoms of the side effects of the medication prescribed from each and every practitioner you see for your illness. If you have a chronic illness you will notice that most often, prescribed medications are the only “help” they offer.
The big one I was considering for the symptoms was the big c… ovarian cancer- I have 8/10 of the main symptoms- and the decline in my functioning as my Central Nervous System struggled to survive as I fought. With the increasing number of practitioners I had lining up to refer me on- or simply point blank say that I am not sick enough to qualify for certain treatments known to help my condition.
I was actually terrified of the big c… the probabilities are good; given my family history.
I have cried many tears, and journaled hundreds of pages of gratitude for being curable!
I’ve witnessed that fight, and that loss. I’m grateful to be curable; so grateful that it was found that I have a complex syndrome; and not a biological disease.
But where it gets muddy and really hard to find helpful help is when you have a syndrome or a group of symptoms that are kind of all over the place, like mine.
This is where the systems that are supposed to be in place to protect us; actually become a cycle of abuse for patients who are in need of anything beyond acute care.
Because of the condition of my body and no one really knowing what was happening I chose to protect my body, and questioned every single prescription I was being guided towards.
At first I had my trust in the doctors that were prescribing me these medicines. Until I was at the doctor again chasing a new symptom, was offered another drug to take care of something for sleep… because all of the other pills are making it hard to sleep.
This is when I said enough is enough to symptom chasing prescriptions! My sensitive central nervous system didn’t stand a chance.
A diagnosis of a popular disease typically herds you into a specialized group of people that handle that disease. “Specialists” or for cancer, you go to the cancer centre nearest you; there are even cancer support groups for specific types of cancer etc.
I’m not saying that any of the systems are perfect, because they are far from it… just that there is a hierarchy to illness, and patients are resourced very differently between a popular illness and one like mine that has the specialists for central nervous systems scratching their heads.
Same goes for diabetes, multiple sclerosis, ALS, when you receive a diagnosis for these illnesses there is a path for you to follow. Resourcing is available, and support is immediate or at least available for you to access independently. There is nothing like that for my disorder; or the thousands of other disorders like mine. We have to rely on medical professionals who have never heard of our “new” syndrome.
For those of us who are dealing with the possible pre- cursors to these illnesses- we are largely left to our own devices until we get a “popular” diagnosis.
I see the same struggle across the board with people who live with chronic conditions that are coping just above the threshold that would provide some relief.
It’s like making 1000 over the tax cutoff for any benefit, and having the access to it removed because you tread water better than others do in your situations… not by much; just enough to get fucked over.
At the point of my diagnosis I had already made some pivotal decisions about my life.
Mentally, I had put myself into a position that even if it was something incurable; that I would use every skill I have to live my damn life to the best of my current ability at any given time.
I thought that was a goal that could be in line with being chronically well, or on the path to it every damn day until I got there, on purpose, and in alignment with what helps me heal is where I decided I was heading.
I’ve been heading in the direction of healing trauma for a year now- I’ve made amazing progress in a year, I am so proud of where I am today!