I could sit here and list all of the reasons why our relationship is abusive, but that would be a waste of my breath and your time.
We have both known for a long time that this day is coming, and it is here.
I’ve heard myself whisper “I deserve more” too many times to not listen.
I’ve broken into a thousand pieces and picked myself up over and over again, with the help of few- all because YOU were holding me up when I couldn’t. I didn’t know how to take care of my needs so you decided to lend a hand where you could, always causing more harm than necessary.
Being held by you is a dangerous place for my sensitive heart.
I need you to let go now, please.
You have had plenty of time to adjust your presence in my life to something that we can BOTH tolerate.
For the past two years you have had pretty much free reign to find your place with me to walk the rest of our life together.
Together we walked through cognitive dissonance and existential way finding- for that I will forever be in gratitude.
I don’t even mind the sideways looks when I say that I am grateful for you, the root of my demise and source of my originally perceived brokenness; it is quite a juxtaposition for a closed mind to conquer.
I will come to appreciate your presence more as I release the last remanence of you and me that intertwine; releasing me back into the world where colours are brighter and the weight gravity feels less depressing.
It seems like an odd thing to say in a moment such as this, but I love you.
Thank you for walking me to this part of my journey in life.
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!
***this contains videos that are unedited of me experiencing and processing my medical journey. There is trauma in my medical journey. Trauma makes you feel unsafe:specific things happen to your brain when you don’t feel safe… and then if your brain has ever had “practice” not feeling safe (ie:prolonged, or unanswered trauma) your brain remembers and hot wires those responses. I am showing it to show my authentic struggles with this disease. Going to the hospital triggers my CPTSD- this is the aftermath of that on my body.
Mental health is a priority, and the level of stress the world has on us is a problem for many- bubbling right below the surface. That is the most dangerous kind of stress- because it sort of hides then explodes. It’s a brain game, I promise you it isn’t permanent… but do take it seriously and talk to someone or learn more about it for you!
If your brain is starting to play games with you please call the help/ crisis line, they are there 24/7 (everywhere has them- just google crisis line I don’t want to link old info). Even if it is just so that you don’t have to be alone through a tough feeling- that’s okay… that is why they are there, for support. Your concern is important no matter how small or “silly” or huge and suffocating… it matters, because you matter. Self-harm of any kind- even just binging is “enough” to reach out for help! Crisis intervention IS trauma informed care- it is safe… please reach there if you need… any crisis line can help you… ❤️ stay safe, stay here… you matter! ❤️
Thank you for coming to my PSA. I love you.
Welcome to my shitshow. -B. 💋
My body has conditioned to being sensitive now. I was in trauma for two whole days, so I just wanted to be authentic and honest about what my normally healthy brain looks like on trauma.
To be very clear I am not discounting the need for any medical service worker- and to know me is to know that I have compassion for the structuralism that the humans doing those jobs have to endure to save people the right way! ❤️ I have emergency nurses in my family. I have respect and gratitude for the amazing work…
I am promoting trauma-informed care for patients, because we need it- and it isn’t available. Anyone that might have started with compassion and empathy has Less and less as the compassion fatigue sets in and they become more under duress from being inundated with even more systems for the CDC – new fucking gowns and masks and all of the Ppe and rule changes that have to be implemented with people who are struggling with that trauma – its absolute turmoil…. how can anyone feel like they really have a second to breathe let alone actually help. It’s just a ball of frustration. My point is… I am working out my frustrations about a rare disease and it’s struggles with the system. Please don’t use my story to NOT seek care… I am just advocating for better care.
Ask for they help you need, always. The restrictions on your free life this past year have been gradually impacting everyone. Taking really good care of your mental health is becoming”trendy” medicine just hasn’t caught up yet. You are not alone in anything that you are thinking- I promise you that! Just take it to a professional- even our most loving and helpful people can be damaging when we really need a pro to guide us! Trust me… I’ve got the pro… she is a self love game changer because she sees my trauma where I can’t!
Pain is the root of my medical problem, and pain especially prolonged pain that wears down my central nervous system triggers my systematic trauma responses… which are elevated in my body. Trauma… We all have it and yet we never acknowledge that it has a way of making even the simplest of things so much more complex.
Well, I suppose let’s just hit the ground running… I had this grande idea of how my vlog portion was going to launch and slowly start to show my journey as it unfolds with pretty shots with new ring lights and fancy gimble. Welcome to the shitshow… buckle up!
I thought it would honestly start with good news; this could all be “timely” news (I’m not quite in a space where I can consider my experience in the full light of positivity yet.
But here we are- welcome to the shitshow. Let’s see where this journey takes me!
Starts off pretty normal- except the dentist. I am unbothered by the dentist, just there for a cleaning and looking forward to the feeling of my freshly cleaned teeth after not having access to benefits since losing my job the December before… it was time! We learned that I have been grinding my teeth, very common apparently for people who are anxious. I need a night guard. And she recommended about 4K worth of uncovered Botox to unlock the super muscles I have in my jaw now. The grinding is so bad there is some damage to my big teeth. She wants to place crowns. My teeth are healthy and normal otherwise very strong.
Jason was back to work, the kids were eager to get back to school… I was eager to get back to them being back into routines, so that I could do the same!
I was feeling alright… had a bit of pain and began my inflammation cycle between ovulation and my period… emotionally feeling the shift of the hormones… but I was keeping consistent and focused on my upcoming goals for 2021. I went on my walk to check that little thing off my list. While I was walking I felt really unwell.. I chalked it up to not having walked early enough in the day to getting balanced, plus just the back to school/work shift with my hormones.
By the end of my walk my left leg had shooting pain deep inside near my inner hip socket. I was having a fluttery heart palpitations and was a little disoriented.
At this point I decided it might be blood sugar maybe thyroid is off with hormone switch. I got home and had a snack and breathed through a couple more shots of pain.
Then I took my kids to the mall, one needed a clothing thing and I had a return. 2 stops. No dilly dally. I had to bend over and breathe mid mall a handful of times.
By the time I was home I was bending over in pain more frequently… this wasn’t like my normal pain, it was sharper and deeper and triggered with blood pressure movement, not physical muscle movement. I took off my jeans and looked at my legs and inspected my varicose vein- my left leg was visibly larger – in spite of being PCOS swollen in both legs- my leg was still significantly bigger. My vein where it normally bulges was soft and gone… and there was a hard piece about half way up my leg between where the lump once was and the pain was idling in my hip.
The symptoms of a possible blood clot are not ever to be messed with. When you add up all of my stuff it equals an extra likelihood of blood clots and other systematic abnormalities. This is why I am so focused on health and rejuvenating… because I have a chance to heal, if I don’t wait!
This is why I am so hyper aware of my body… we’ve come to have a very intimate relationship lately.
Emergency medicine reduces being aware and wanting to preserve your body by asking and or knowing anything about medicine, or your own body to being a hypochondriac, or a drug addict, or some other form of attention seeking or line jumping tactic.
With my diagnosis of centralized sensitization syndrome, I became so much more aware of everything pertaining to my health.
I have made significant lifestyle changes over the past two years. I know that the longer I wait, the longer I do tests that I don’t really need that give me just tiny pieces of information, the further I degenerate. I can’t do nothing… so I have been making changes while I wait.
This is how the medical system handles my chronic condition.
I don’t believe any human should be treated like this! Trauma informed care needs to come to be implemented in medical systems immediately!
Pictured below is what happens when you google my condition. Triage had this information and didn’t know what it meant…. no one bothered to look… I just cycled up into CPTSD for 9.25 hours.
I had the tests. I am perfectly normal! My blood is looks great, everything looks amazing!
I have asked my doctor months ago for a referral to a neurologist. I was referred to an endocrinologist after I insisted that I should speak to one… when I finally got to talk to him on the phone, it was one traumatic intake then a referral to an even more specialized pelvic Endocrinologist… because I knew more about the vagus nerve than he did… I was too challenging. How does an endocrinologist need more guidance when a patient simply asks…
how do I care for my cns better?
But what about just my central nervous system? Any advice?
Dr. : Ask the vagina doctor, I’m not sure….
The most infuriating thing for me as a patient is being treated like a piece of a broken human no matter where I look for help.
I have chosen to value living in a whole human way, in harmony with my illness and fix what I can and learn to dance with the rest.
I have to value harm reduction for myself because of the complexity of my illness, and the rareness of it all. If I don’t advocate for myself now- I will lose organ functions much sooner than I need to.
The wear and tear on my body is real. I am a little nervous to get my genetic testing back to see the real damage waiting has really done.
Waiting for the help doctors have acknowledged I need- but when I go and seek emergency treatment, with uncontrollable pain, I don’t have access to the mri (even though I have literally waited much longer than my share of time, nearing another year)
I’m waiting for a surgery that I am so far down the list for because my condition is so misunderstood, and my diagnosing doctor is sooooo busy because she is one of the best. Getting to her took me 2 years. (Before I was on disability sick)!
I’m waiting while I do everything in my power to regenerate as I deteriorate.
How long are people expected to tread water while they wait in and out of CPTSD induced by 10-40 day pain cycles?
I am taken less seriously because I have strong resiliency skills.
Rare chronic illness is no cake walk. I should never be repeatedly traumatized when attempting to access help. I understand neurological pain, I should have the respect of being informed if they suspect that over me upcycling in a waiting room.
I should have the choice to get a second opinion in emergency medicine when I ask for one because I don’t feel like a doctor is taking my rare disease seriously.
I am an ultra high functioning case. My therapist had a hard time identifying when I was in full trauma at first. I had to be willing to tell her what I was really feeling, and not hide.
My wish is for medicine to be systematically trauma-informed, because we all need that.
You can’t see my disease, just like you can’t see the trauma that anyone has carried.
Trauma-informed, with self love, and on purpose…. that’s how I choose to live, every single day.
I have some really complex ones that I have created for myself.
I have built them up over time.
They are a complex system of reasons why I should or shouldn’t succumb to urges for the sake of my comfort, and at the expense of my growth.
The one thing that I know about excuses is that they are part of growth that we don’t like to talk about… they are the death of growth.
Excuses are the death of growth.
Mine are anyway.
My excuses for why I do not do the things that I know need doing are alarmingly good at targeting my little bit of willpower and obliterating it with a single thought!!! One little sentence in my head- can kill my motivation with laser precision- and nothing even needs to happen, just a thought.
I have “watched” myself process as part of the mental health exercises I have completed throughout my healing journey.
I progress through the goal setting stages, and then build the motivation that I need to propel me forward, and in the beginning , and still more often than I like- I can be defeated by an excuse that comes from a negative thought. Then I beeline for the comfort that I know is bad for me, but need the comfort so badly that I don’t care in that moment. Then the regret and the building upon the self sabotage happens. This is the cycle of addiction.
If you watch closely you can match the cycle of addiction to every single human. whether they identify with it or not- we all have things that we need to be “addicted” to. I can assure you that the person who has the addiction to drugs and the person who has the addiction to food and the person who has the addiction to working on their body for a building competition, all have the same emotional struggles they have made different choices as to how they cope.
Coping is a survival tool.
Coping is necessary, sometimes… it is what we need to do to carry our bodies from trauma to restoration. There will be times when coping seems like it is the only thing available, because sometimes it is.
I think we have taken that sometimes and run with the feeling that the coping gives us. Coping is a form of instant relief- but it is ultimately a band aid that actually causes many many other problems.
Coping kills progress and coping of any kind is addicting.
I have noticed that there are so many ways that we cope without even realizing we are coping. That was the astonishing or shocking part to me. The fact that we all are sitting around coping as best we can, kind of just spinning around all of our cycles as we go, making them all move more quickly as you build upon them with the entanglement of reasons why you think that you can or can’t do something… creating, you guessed it… excuses.
My life only began to change when I stopped making excuses for myself, when I started challenging my excuses disguised as “reasons” for my apathy.
Excuses, are you using them to cope? Coping is sometimes required, but coping is not thriving it is important to intend to tip the scales to healthy resourcing over unhealthy coping when you can.
I am striving for thriving, with healthy coping strategies, not excuses and harmful things.
I try not to let excuses or coping be the death of growth these days, wherever I can. It is a learning process.
The three words that made my whole world make sense again, on paper at least.
Its a diagnosis. My diagnosis… Those three not-so-little words, and the explanation of the physical pain I was experiencing together gave me answers that I had been desperate to find.
Sure, it was the answer to all of the questions that I had, but it certainly didn’t solve any of the problems that had helped to create it.
Like some kind of fucked up jeopardy situation… I was given the answer and then sent out to explain to the other medical staff that I was having support me through the process. Except that the medical system and the mental health system do not work together at all because they are separate according to archaic medical science.
Any idiot with google and about 15 minutes can figure out that there is a definitive connection between the human mind, and the human body.
I have made that connection. Science has made the connection… I have a diagnosis available for this new fancy condition that specialists in the actual field do not have access to- because they went to medical school long ago.
I have a diagnosis- but can not find a doctor that can help me correct my hormonal imbalances. I had the privilege of speaking to an endocrinologist- who learned of my condition from me, during our initial visit. Forgive me for not feeling safe in the arms of the medical system, when I am hand holding physicians hands through the central nervous system and how the hormones are connected to my physical responses ie: fight or flight anxiety responses. It is all connected, the physical health, and the mental health- the secret is in the hormones and balancing them all before my organs are too damaged to sustain life.
I am in a race against time to expedite the healing process of my central nervous system before I am submitted further into my disability, and further away from the health that I crave.
At least with the benefit of the knowledge of my diagnosis, I was granted the ability to heal, because I had a starting point.
What I have come to learn is that central nervous system care is extreme self-care, and it is never a bad idea, also it is the way to heal some of the symptoms of Centralized Sensitization Syndrome.