Sometimes trying to be sympathetic when you can't be empathetic is really not helpful

I have gotten really dehydrated (hypovolemia) again and the condensed chems have made me depressed and frustrated again... and last night I was really upset and I ranted a lil on my FB page:


What's the use of the strongest heart, in a body that's fallen apart?
Most people tell me I am strong and that I have a will and stubbornness that doesn't know when to quit ... what use is that fighting fighting spirit when I can't even walk some days?
I want to be out doing something, making a difference, helping someone...
I can't even volunteer places because I never know when I get up in the morning what I will or won't be able to do that day so I can't commit to a schedule.
So what good it strength of will when you are too tired/weak to use it?

I got a couple comments most about keep fighting and this too will pass and strength isn't only physical and just focus and have patience and things will happen.


And I don't want to insult people who are trying to be nice but it really pissed me off a bit and I figure this is the place to explain that not on FB:
My point, in the original rant/post, was I can't go full tilt on a good day cause I can end up bed ridden for week, and no one seems to get it that this is a disease that fighting is the worst you can possibly do!
I'm supposed to just sit back and relax and go with the flow... I don't do that well even when I feel good, but when I feel bad I am much much worse and it feels like not fighting is just giving up and being lazy.
And I am well aware that strength is not always physical but if you don't have physical strength or energy the rest doesn't amount to anything at all. I know cause I have lots of ideas and plans and things that I think could make differences from my block to the country to the world... but nothing comes of it at all in any way except some notes on a pad of paper or bullet points on a word doc.  I don't have the energy, strength, or other resources needed to make any of them come to life.
And as of this coming spring it will have been 6 years since I started deteriorating.  And there are plenty of people out there in a similar state that have been this way for 20-40 years even.  SO there is no guarantee at all that this will ever pass!!
I really do try to positive.  And I watch inspiring movies and shows.  I thought Soul Surfer was a great movie and very motivating in believing that awful tragedies can happen for reasons we would never be able to guess and can lead us to paths that allow us to make an even greater impact then we would have on our own paths.  I have also read or heard of stories of people who had injuries that left them paralyzed and they went off to have great lives, or those told they would never walk again but persevered and proved the docs wrong.  These people and many like them are inspiring and courageous and impressive.
But being needed to be told that if you have the will to push you can do amazing things isn't my problem.  My problem is that I have a will trapped in a body and even sometimes a mind that won't work.  Its not a fighting spirit I lack but the actual cellular energy to make anything that spirit is willing to push for come true.
In Soul Surfer she goes through a horrible or ordeal and she is handicapped. But except for the use of one arm, which she perseveres to learn to function without, she has her health... she is physically able to push her body as hard as she wants to train.  The guys I have read about from crashes and such who were told they would never walk again but used there mind over matter force a will to make their body work didn't have brain damage and they actually had the cellular energy to make things happen.
To know your Mitochondrial DNA don't work right... that your body isn't producing some of its most important chemicals for basic functioning and you keep loosing oxygen to your brain and can get hit with the evidence that you are still dealing with some (even if only minor) brain damage (i.e. you suddenly can't speak, you loose your hearing for 20 min, sometimes you can see in the dark and smell gas 3 apts away, and every sound is screaming in your ears, or you can speak but literally can't say anything but "I don't know", you become insanely overwhelmed and unstable when confronted by simple decision making...).  No these things don't happen often or not very but they do happen and it reminds me that I don't get to be someone using mind over matter cause my mind doesn't work :-/

I guess I am just tired of people telling me its going to be alright or that I am a fighter and shouldn't be negative.  I went from squatting 250lbs and maxing everything but the run on the USMC PFT (I could even do pull ups instead of the flex arm hang) to not being able to walk some days, to not being able to take down the garbage or do the dishes to help out my mom who is so over taxed between work and talking care of me she has almost no time for the house its driving crazy and making her so mad I feel sicker.
I know I didn't loose everything: I have my life, my family, and there are many people worse off, but I lost A LOT and I am so sick of people not understanding how much it hurts and how much I really did loose!!

been tied up ... and forgetful

I know I haven't been keeping up with this AGAIN! :-(
The last 3 weeks have been especially hard I had an important family obligation in DC and found out right before we left that my grandma's last cousin of her generation had died, then the next day on our way down I95 running late and hitting more traffic then should be possible (which drives my mom totally nuts and I stress out when she gets really upset) we found out that my mom's oldest friend (who had married my uncle and become my aunt) had just died as well.  We were able to make my grandmother's cousins funeral in Richmond VA but didn't have the money to get to Texas for my aunt's.
Then a bit after we got back to NYC while I was trying to stay on my feet (I had actually done pretty well with the whole trip and funeral health-wise) my father fell and his artificial hip popped out and we needed to get him to his hospital but they no longer took emergency patients so we took him to Northern Westchester cause he's been there before.  It turned out that the hip had punctured or gotten caught in his muscle and they tried and tried to move it back into place but couldn't and he had to be admitted and then we had trouble getting in touch with his original surgeon to see if we should move him... He ended up going under heavy anesthesia 3 times at least and they had to order special parts and he was in so much pain even with the constant pain killer drip.  I kept going back to the hospital to try and be there for him and help but I was getting weaker and worse off and  all the high pitched beeping and alarms and other stuff was honestly painful.
So my dad finally gets figured out and his hip is back in and he leaves the hospital and says he's fine on Thanksgiving.  I was in a lot of pain and kinda miserable that day, but dinner was great and I was able to get myself OK enough to watch my University rival football game and we lost, in our last game ever against a team we have had a rivalry with for more then a hundred years, by 1 point in the last 2 seconds of the game. I was enraged/crushed.
Then I get home and am really feeling the toll of all this emotional and physical stress... and my "lil sister" was in horrid pain with a nasty infection in her mouth and her parents wouldn't take her to the hospital and had given her pain killers (seriously heavy hitting) and antibiotics without even talking to a doctor.  So now I'm trying to help her check the meds and any interactions online and find her an emergency dentist or Hosp ER with a dentist on call.

So that is part of my excuse for not having been around when I had said I would be....

looking to find inner peace without falling to pieces...

I spent most of my life, before I got sick, living on adrenaline.  Whether I was bouncing around happy, experiencing intense sports, or charging head first, into a fight or cause, driven by anger and righteous indignation I was generally all high energy.  Since I got sick and had adrenal fatigue (as well as every other type of fatigue thanks to my mitochondrial DNA not producing ATP's/energy molecules) I have found myself having to deal with being down/ low energy (sad/depressed/exhausted) more often then not.  

Also now that my "fight or flight syndrome" jump starts my pain conditions I have been learning to let go of my anger as well as stay away from adrenaline sports and even looked into meditation (though as a type A personality I seem to be physically unable to sit still and "let go" of my thoughts and mind).
So I am looking into Tai Chi and/or Yoga.... any suggestions?

Interestingly it is actually my messed up brain I have to thank for being willing to even keep looking.  I have never been very interested in meditation (though mostly because I have never been able to sit still and "empty my mind".  But a few months back I had a couple weeks of very intense "emotional lability syndrome".  I would swing, within a matter of hours, from extreme depression and or rage, that had me screaming and even worried about injuring myself on purpose, to being absolutely calm and centered and totally focused on whatever I was working on or needed to get done.  It was a feeling I had almost never felt before in my life.  It wasn't anything like I had thought or worried meditation might be (and I know it will take years before I can simply get to that place of my own volition, without my brain chemicals tripping me down the rabbit hole) but I think that level of focus would be an asset in any situation and would only help or augment my personality not change it the way I had worried about in the past.

"Life's Not Fair" But we tend to react like it should be...

This is a bit of a vent/rant post just to let you know :-/


I am well aware, both, that patience has never been my virtue and that nothing work instantly (especially my supplements) but even knowing those facts it is really frustrating that the day after I finally get almost all my pills down, after not getting almost any for a week, ends up being one of my more debilitating days physically, mentally, and emotionally.
I know the world isn't fair and things don't actually happen with the equal correlation we seem to be born expecting, but when you do something good or right or healthy, and especially when that something was hard to do in the first place, you want/expect  (whether that expectation is rational or not) the equal (and opposite) reaction to be it helping, or you getting positive recognition, or things being easier in some way and when it ends up not helping (at least not in any way that you can recognize) or in fact you feel worse, THAT JUST PLAIN SUCKS!!!

The way the world should work in the eyes of children:
Do something bad = get punished
Do something good = get rewarded
Be unhealthy or irresponsible = get/stay sick or face consequences/rebuked
Be healthy or responsible = get/stay healthy or be lauded/praised

I it doesn't work like this but sometimes I really wish it did... especially when I am in pain and tired and all I want to do is some damn chores to help out around the house (and because I know if I can just get reorganized I will be so much better at keeping a schedule and taking my pills regularly and be on the best path to getting healthier again .... but how do I do that when I don't have the energy or ability to even just put the dishes in the dishwasher let alone re-make my bed and change out all the cloths in my drawers from summer to winter and clean off my desk and table and set things up to make my life easier (less stressful) and there for healthier.

I'm Baaaack!!

Over the last year or so, since I stopped writing this blog, I have gotten emails and phone calls from people who said that reading it helped them.  And I have found that I need a place to vent and talk about my condition that isn't facebook. LOL
So I have decided to try again.
It has taken so long because my summer was pretty hectic and draining, and also because to be honest I wasn't sure if I could make it work, since I didn't do too well with keeping up with it regularly last time; and, to be honest, I know that I don't do very well with one sided interactions (putting energy out with out getting much or any back).
And on that note I have a request to make of you, the reader: please respond! Leave a comment, send an e-mail, if you know me personally go ahead and drop me a text or mention the blog next time we meet up.  I don't mean to take up a lot of your time and you don't have to say anything overly insightful or even helpful :) I just need to know you are there and that you are reading this.