Hi Rachel! I would have to say - Yes, I believe the diagnosis’s are complete (for now…) and treatment options seem to be so difficult because of the varying symptoms being so widespread & not so much concentrated in 1 area or body system. From what I’m learning, our bodies are kind of like an elaborate domino structure. It all starts with that first domino - then as it moves the momentum through the course, depending on the ways in which it falls, it can take a new path. Mine seem to be branching out with multiple channels & because of this, it’s hard to find that balance of my day-to-day existence.
Over the past year, I’ve been learning about the nervous system - since it seems to be my biggest enemy & where my “Patient Zero” is within my body. Not sure whether it’s the “Central” (which i do believe it is in a lot of aspects). Or whether it’s the “Peripheral” (also having an impact). It’s all very fascinating to me, that’s for sure! Historical emotional trauma & its effect on it all, as I’m learning (even though I really didn’t give much thought to that aspect since it’s not in my daily thoughts!) has potential impact in the same geographic area of my nervous system as majority of my symptoms origination.
I feel like if I can pinpoint the exact area of my brain, spinal cord, stem, nerve or wherever everything is coming from - then I have a half a chance of fighting this terrible takeover & find “Me” again!! Puzzling how something can happen to your body & it can affect everything from your cognitive ability to your ability to comfortably sit in a chair. Or removing a wrapper to “short-grabbing” objects too many times to count because your vision is a constant reminder that “things aren’t normal”. Most people enjoy a nice boat ride or a couple glasses of wine - but when you feel like your 2-glasses deep or like you’re walking on a surface that seems to be slightly unsteady, it’s not as much fun 👎🏼 as it sounds!
How does someone NOT secretly wish their partner could experience the feeling of just 1 of their symptoms for an entire day & see how THEY feel, let alone about 10 things happening at various moments every-single-day so they understand a minuscule glimpse of what it’s like to be you & grant some empathy or compassion to the fact of what you can accomplish is an astonishing accomplishment!??? I try to stay positive, but I do find my resentment increasing as much as his has & THAT is hard to reject the anger that then comes along with it!
Is everyone surrounded “in real life” by assisting, helpful, compassionate people that allow you to be “broken” without having to still be this “super-human” like you were before?
I very much understand what you're going through. Managing wide spread chronic pain and symptoms is quite taxing physically, emotionally, and behaviorally. Its good that you're interested in understanding and learning about your condition. When I attended Mayo's 3-week Pain Rehab Center's comprehensive program, I was able to learn the science of Central Sensitization Syndrome (CSS) and how the central and peripheral nervous systems are big culprits in causing havoc in our bodies. You may be interested in this conversation about CSS and connect with others experiencing similar situations-
Has Anyone Been Diagnosed With Central Sensitization? -
https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/
How unfortunate you do not feel supported by your partner. Maybe they truly don't understand what you endure.
Mayo Clinic's Dr. Sletten beautifully explains chronic pain and symptom management here in this video:
Perhaps watching it together with your partner will give clarity and perspective on living in chronic pain, help provide the science behind pain, and offer some ideas for both of you to move forward in management and understanding.
Hang in there. I know it's challenging, but keep your chin up and know there is always hope and opportunity to grow, learn, and find joy despite conditions. You are much too young to be swallowed up by pain and not feel that you still have value. You will find YOU again! I'm looking forward to your thoughts on the video and whether it resonates with you. I hope it's a lightbulb moment. Will you please get back to me with your thoughts or questions? Have a pleasant evening.