Watching My Own Decline

[Guest humanb4monitor]

This could be, well, a lifetime long but it won't. I have had POTS since birth and recall symptoms as young as 6. Late 40's now. POTS stole my life. POTS stole my life.

I read others things and so many, if not most, had some life in order before onset of the most serious stuff and serious cognitive impairments.

ie: home

hearth

college

job

career

kids

mate

LIFE.

Or diagnosed in youth so you get a chance to learn to manage and live.

I floated but didn't know why I wasn't taking part as time passed. "Ritual type parts." I lived day to day. In the mid 80's I NOW know what was happening THEN and can even recall severe sypmtoms worsening. Also a bad bad fever then. By 1994 I was wacky and panic-eee and afraid and easily hypervigilante.

I was seriously sick (cancer) and didn't know about either one. Took care of the cancer ( huge miracle no one survives) but POTS was still unknown till 2004. So w/o that knowledge I was day to day feeling stranger not knowing trauma, illness, and chemicals were exasterbating something I didn't know I had. I just knew I was broken and of course always reminded of that by people who were supposed to support me.

I left my long time home of 24 years in 1996 to come east and be near the most imp. person in our lives. That was an error. The biggest error of my life so......getting phys. sicker and emotionally unmade.

Could see myself floating away. Could feel myself losing the ability to decide. To decide anything.

A lifetime of sick sleep worse and fatigue getting un-livable.

OK--so trauma was killing me. It froze me while everything else was stealing my life.

So much in between then and NOW. (POTS Diag in 2004)

I have had great docs as well as corrupt and evil docs who KEPT me from wellness. That is true. Docs that I rejected who then barred me from seeing people I needed and liked in their depts. Docs that could have hELPED and I would be so much better NOW. That happens--medical corruption.

On Feb 19th---this past---I underwent the 2nd most serious surgery there is.

I thought about what it could do to everything. But only briely as all were rooting for me to do the BEST thing: surgery. And I have no humans in my life at all and no support at all. And even up until this time, I still has these little little bitty flames left in me to keep trying. Just keep trying to find a life.

I was in the hosp. for nearly 3 wks and this was MY DREAM:

(don't forget while other POTS folks I was reading about and seeing had things in place already but still suffering and I am all alone. As alone as anyone can be)

ahem...my wish and dream was that I would recover well. DEVOTE to recovery and kick butt and finally 'believe again' that I could have....have....I could plan a day and my CFS and POTS and sleep and sad would get manageable. And I would get the ****outta this stae and town.

I am GONE. I have been unable to function. I realized about 3 hours ago as I have watched my inabilty to even leave my apt, that I am not longer ABLE to plan 1 hour ahead.

The gym....the things that I live for regarding emotional balance....I COULD have been able to go back to over a month ago. They see the surgical recovery as being amazing and everything else....I thought I was "walking Dead" before. Funny.

I am walking Dead. There is no thought, only resignation that I will look out the window for the rest of my pathetic life that I didn't ask for, and watch everyone else.

I shouldn't have had the surgery but everyone disagrees. Tell my body that.

Standing is nearly impossible and with time, even worse. Fatigue ONLY.

I never saw this. I never ever saw before 1995 that I would be un-alive for the last 15 years. That I would be harmed by the most trusted people in my life over and over.

I haven't been held since 95. I do not even have acquaintances.

I go to bed now, and know the reasons to wake are none.

I get shadows of 'maybes' but they go away as soon as I try and motivate.

Pardon this story but I had to tell. My life was supposed to be a life. Including doing something HUGE as I have this passion seen by few and was involved in serious and important things before it got worse in the 90's

I was supposed to be a mom.

I do not believe it will ever be any different than now. That I will live second to second forever until it's over. Fun is not this.

Saddest part is my heart is GIGANTIC and I help epople everyday and I even know how to clean up the oil and talked to the National Coast Guard today WHILE LYING DOWN. And I have never gotton 1/100000 back what I gave.

Pleas edon't platitude. tha makes it worse. the flowers cannot even BE smelled anymore bacuse that may take a monet and I can't see that far ahead.

((me))

[lieze]

I'm sorry you've had such a rough time.

Please talk to us more-we would love to have your company.

May I ask what the surgery was that you make reference too?

[Guest humanb4monitor]

Thanks "L"

I even recall when things started moving on their own and the perceptual issues that come with pots got worse.

yes--it is very very bad and could happen to anyone if you do NOT learn TO MANAGE and we help each other do that. That is why I left other sites. No one wanted to do a support/skills gig. Only data and numbers.

That is why I liked the "word of the day" thread. People were FINALLY talking about all the %#$@#&%^*^ components of this mess we were born with. I do belioeve ths sleep issues will kill me though. Chicken or the egg?!

Thank you for hearing me.

(((Lieze)))

fear that it'll never be less messy as surg. made it again.

Thta is for a pm if you wanna ask--OK

(((hugs)))

nite

[firewatcher]

I am glad to see you still on the forum today! I get to similar points where I feel like POTS has taken everything I enjoy from me and I don't even want to hear a kind word from anyone. Sometimes I find a sort of peace from just "letting go" and finding that even after that point, I still breathe.

May you find that peace.

[Guest humanb4monitor]

((Firewatcher))

HOW? I cannot even bring it UP? And I always could with giving, earth, music, kindess

I really do not think people can imagine how alone I am and so many take their people for granted.(not you)

WE NEED EACH OTHER. EVERYDAY IN EVERY CORNER OF THE UNIVERSE.

I am a people person who lost all people 15 years ago by the people who convinced me I do not belong anywhere.

I was speaking with someone yesterday about THOSE VOICES. They may not be around anymore (bad ones) but they are/were the only ones for so long that they even enter my bad sleep.

There is NO ONE. NO one to support even after a bad or hurting day, hour, minute.

I am afraid that I really have lost the will. NOT IN DANGER.

Today: my whole body hurts and dreaming of exercise makes that a sad sad sad thing.

I get mad. A lot now. Few could survive 1 hour in many of our lives and theylive w/o ethics, morals, charcater, SHOP for gratification, never help strangers and think only of self.

I was a baby wanting to save the world and I got this!

I have never been this mad or piti--fied.

[firewatcher]

How?

Because I choose to. It is the only choice I do have. I can't control anything other than my own reactions and attitudes; not my physical condition, not my abilities for the day, not others.....nothing. I don't know when I'll feel good, or bad, but I know what makes me worse. It seems like everything that I used to enjoy has been taken from me by life and circumstance: gardening, exercise, cooking....even some friendships. I keep wondering what life or POTS will take next. I have no surety of health to allow me to plan past an hour. I do the best I can at that given moment. It is all I can do. Control is an illusion and understanding that can bring a peace that I hope you find. It comes and goes and you'll have to find it every day, sometimes several times a day.

But it does make me thankful for the things that I do have and YOU will have to find those. Start small, be thankful for having all your hair (if you do,) or beautiful feet.....anything! Gratitude is supposed to be the key to happiness. It is hard, but it is a choice.

[potsgirl]

Firewatcher,

What an excellent message. We all need to hear this more often. Thanks.