Special Edition: Adrenal Update: Most Important Thing

If I could tell people one thing about adrenal conditions, what would it be?

I have spent countless conversations explaining my everyday life – pains, fatigue, throwing up, brain fog, muscle pains, organ pains, shortness of breath – mostly people politely listen or give me the deer-in-the-headlights look and try to sympathize. It’s a rare disorder with only about 1 in 100,000 people getting and official diagnosis of it (that's for Addision's Disease, other conditions aren't recognized as real).

It’s one of those things that, I believe, require you to go through it to truly understand on that level. Most of my arguments, complaints and pleas have focused on the symptoms and the life of it moment to moment because that’s often how I have to live.

Maybe, I am being too honest. I’m like Chris Hatfield to explain living on the International Space Station to someone who has never been there. He can talk about life up there, loneliness, excitement, his day-to-day and even the return and the issues and successes. I will never understand. None of us will.

Well, unless you go to space. I won't. I'm assuming a lot here.

What You Need To Know
What is the most important thing to know – what do I wish everyone could know?

It is isolation.

By definition, it is being an island. It’s being alone. I am alone in this. There is no one to talk to. There is no one to share stories or success or hope or depression with. There is me sitting alone watching these waves of other people’s lives go by and watching the sun race across the sky.

During a crash, it is shutting down my ability to move, to think, to feel all for the sake of staying alive. Inside me is the desperate want to connect and to experience without any ability to do so.

If you want to get artistic – I felt on So You Think You Can Dance, Kupono & Kayla dance to Sara Bareilles's "Gravity"  was a beautiful interpretation of the feelings. Even though the song speaks more of a dysfunctional relationship rather than organ failure – I do know I am attached to this condition and will be for the rest of my life – but I wish I wasn’t.

It is isolation.

Not anti-social. Not introverted. Isolation. There are no feelings in isolation. There is no peace. There is nothing. No happiness, no sadness, no experience, no connection. It’s minutes, hours, days of nothing. It’s being in a waking coma when you know and can see everything around you but you can’t be apart of it.

You can talk to me. You can invite me places. You can offer kind words. I must stop myself from feeling them. Every shred of life that touches me hurts and prolongs the need for isolation.

I once said it was like trying to be Zen – but that’s misleading. The isolation is not Zen like. It’s not a meditative peace. It is, first, an inability to feel. It is, second, knowing if you do feel, it will hurt. It is, third, a need to feel.

I once wrote:

I feel like I am vanishing, caught under the click-clack of each decision I have made, caught by my throat against the smooth movement of reality.

If I could tell people one thing about adrenal conditions it is that it is isolation from being human when all you are is human.

Progress
I am hanging in there. The pain has been reduced, but, it’s still there. The stress of work related things next to the wedding things and next to just functioning on the daily is not really giving me a break. But, I am trying.

I have been more vocal about it and have been met with the main reactions I am always met with:

• Somewhat bullying humor about how easy I must have it.
• Loud announcements of my inabilities during conversations.
• Disbelief of situation and requirement of official proof.
• Suggestions of weird items to fix the solution - like yoga.

As far as symptoms –

• I don’t feel like I have a mouthful of blood so much. More like soap and metal.    
• The pain is crippling far less. I had a moment when it struck and I know I visibly showed it since someone was talking to me but I was able to sit and sort of pretend I was being rude. 
• The constant lack of homeostasis has been reduced to hour or so stretches per day. The doctor gave me 10 pills of an anti-anxiety medication which I need to try out. 10 pills means if it really works, I will have to ration for only really bad days. I don’t want to take something for the symptoms so much – I want to nip this in the butt of the offender for a true solution!

I have had some good days – I saved up my energy for them. The tough times are really tough. I can rest for a couple of days and have one really good day – then back to crappy. I feel like I will have less and less days to rest as time goes on.

Yep. I just feel. . .isolated.

Image Credit:
Isolation from Etymonline.com
Dancing image from group.mtime.com