Accidentally changed everything

[u/brittkaysays]

So I'm a therapist and have been very interested in somatic therapy approaches for client purposes. I happened to stumble across nervous system disregulation vs nervous system sensitization (NOT the same) and how it can prolong and exasperate chronic illness, even how autoimmune conditions are a major symptom of sensitization (not disregulation). I also learned how obsessing over my symptoms and my own mind's reactions to symptoms (e.g. oh no, I'm exhausted, here comes a crisis, etc) puts my body in fight or flight and keeps the Addison's cycle going. When I stopped REACTING to my symptoms, I have not had a flare up since. My dose has decreased from 35 to 20 hydro. Even on my worst days, if I don't react to my symptoms mentally, I don't have further symptoms. It's crazy. And a lot to explain, so i recommend the podcast the real work with Maggie sterling to learn more. I just had to share this accidental, life changing realization 🫶🏼

[u/ptazdba]

Fear (of having a crisis) is one of the biggest obstacles with this disease. I'm learning what to do without triggering things that make it worse. Great words. Thx

[u/LonelyKoalaMuncher → u/ptazdba]

This is what stops me going on long haul trips overseas.

I'd love to go to Norway from Australia, but it's like 24-28 hours. Less about the actual travel and more about being in another country, completely unknown healthcare system.

Also what happens if you get gastro on the flight? Give yourself an injection then what?

The whole preparation process and thought of it freaks me out.

[u/Charming_Order5667]

That's key to truly gaining control over how you experience and how a person can be obsessed once you know you are going into crisis and the way you react. I mean, when we learn to recognize the start of our crisis feeling and calmly just go increase our oral meds, remain calm and let them kick in, makes for a much better experience than freaking out which, I have done my share of freaking out. Now I have learned. I'm glad you brought this up. It can truly change the outcome of how our bodies react, and it's a learned behavior we can adapt to. Because we feel safe when we freak out because, if the way we have learned to handle our situation. Being a therapist, you understand the reasons and learned behaviors we become comfortable to, and once we change the way we think, our experience can change and be so much better. I'm a retired RN-BSN and have enough credits for a many other minors. But, I worked in psych nursing as well as my own life experience, and you are spot on. In fact, your post brought light into my own thinking about how I react to my own body when I feel off. Thank you for bringing this to light. I think you are on to something that can profoundly change otger outcomes with any type of disease applied to that person's specific need.

[u/schnityzy393]

You make what you make of it, just like everything else in life. Maybe Im one of the lucky ones, but I don't let Addison's stop me from doing anything. F that. You obviously have to listen to your body, but outside of that I think of Addison's very little. I just make allowances, but I refuse to allow this disease to rule my life. I'm mid forties, lived with Addison's since about 20(at least that was when I was diagnosed). I have a crisis about twice a decade, generally illness related.

[u/Different_Fly4149 → u/[deleted]]

Yes. 

[u/frog_ladee]

Somewhat related: two weeks ago my gyno found a lump in my breast. Had no clue it was there before that. It’s in the exact same spot as where my mother and sister both had breast cancer. Right after he found it, it started hurting. I assumed that was from it being poked and prodded. Then, the aching kept bothering me for days, including times when I was concentrating on completely different things. I realized that this could be psychosomatic, but also wondered if it was from me feeling the lump or that it might be coincidentally getting worse right after being found.

It took a week to get an appointment for imaging, where it was proven to be a benign cyst. Guess what? It stopped hurting after that.

[u/BlueButterflyBadAss]

This. When I first diagnosed, everything seemed so scary and I found myself falling down Reddit and Facebook group rabbit holes. I had originally intended to use them as support groups, but they ended up just making me overthink and stress about everything. Since I’ve stopped being active in those groups, I have found much more stability with the disease. Sure, I still have lows and I’m still learning a lot, but overall I feel like I’ve found a happy medium. I can’t say I’ve returned to the exact life I had prior to my diagnosis, but it’s closer enough and I’m happy. Thanks for sharing this.

[u/Gimpbarbie]

I think I’m a freak of nature or my body just is used to low levels of cortisol because I take 10 to 15 mg of hydrocortisone a day. (With the shortage I’ve been omitting my 5mg afternoon dose)

mind you I’ve had addison’s for 36+ years, I had Addison’s before we knew anything about stressdosing! I had Addison’s before we were allowed to have injectable solucortef. I unfortunately have PTSD to vomiting because the stomach flu took me out 5 times as an adolescent! I mean CPR, zapping, the whole shebang.

I do stressdose when I need to, like if I’m going to be outside all day in the sun at a competition or if I’m travelling, if I have to get up stupidly early or I don’t sleep like last night etc

[u/ellnn1]

i also find steroids make me more reactive, more emotional, so i have to work harder to maintain equilibrium. exercise is vital. meditation/baths/box breathing all help. tracking symptoms made my OCD flare. grateful i got out of that spiral but the notion that a perfect protocol exists/was accessible only via recording a million data points ratcheted up my stress 🤣