Oh My.

Thud, thud, thud goes my heart. Actually out of breath, ughh. Monday I had such a good day, but I think the events of the week have been a bit hard on my health.

Just mostly trying to cope with my latest SSDI decision. Lots of anger. Especially after I guess I took too much advantage of my good Monday, I got optimistic, installed a WordPress blog, scanned about 1/4 of my papers I'm filing w/my NeatDesk Scanner Trial, and did a couple loads of laundry, though couldn't fold them, and then Tuesday I was in bed all day, too exhausted to do much, and that's bad for my mood. Can't remember what Wednesday was like,probably a bit devastated to have it thrown in my face yet again that trying to work is overzealous, but Thursday I decided maybe it wasn't the judge's fault, he seemed to have such a sketchy view of my situation, and maybe the problem is that I haven't sufficiently illustrate for them the exact reality. I proceeded to begin writing them a letter, clarifying and presenting evidence for anything they got wrong, or any incorrect assumptions, reiterating that it's not that I'm contradicting myself, but that my condition is constantly fluctuating. Yes, there have been times when I've done things that I "couldn't" do if I was THAT sick, but I'm not THAT sick non-stop, and there have also been times when I've been bed or couch ridden. Many more of the later than the latter... Clarifying things like that I in fact WAS under the care of an Orthopedic Surgeon for my degenerative disc problems see files from Dr. So & So dated xx/xx/xx, and that my Mother does in fact support my case and would write a letter attesting to that fact and describing what she has seen me experience, stuff like that.
I painted a far more thorough picture of my life in the last five years; the monthly battles, the day to day fluctuations, month to month, year to year. The ups and downs. I hadn't realized, but they somehow got the impression that I was laid off from my job and THEN claimed to be sick, having showed no signs of decompensation, prior to the event, which is grossly incorrect. I have a termination letter that actually states that the reason for my termination was excess absences, and I have proof that I was actively seeing doctors trying to find a solution to stay healthy enough to work for months, and that I actually deteriorated further after having surgery 3 months before I stopped working.

Before I knew it, I had 20 pages, which was fabulous. And felt pretty ill even though I'd been in bed the whole time. (That sound thorough enough? lol.) I've often wondered if many people w/POTS have that problem, feeling ill from being on the computer sitting bed? If so, it's likely the sitting up. If not, maybe it's my c-spine problem. All I know is I have an overwhelming urge to lie down completely flat, even a pillow won't be had. Had to be at least part Dysautonmia though, cuz I felt clammy and nauseous, like I was being choked by my heart beating in my throat.

Overdid it I guess. What can I say? I'm struggling to survive. I woke up with a severe case of anxiety and had to do something because I could hardly stand it and I didn't see sleep returning, plus it seemed like an idea. And I knew if I stopped I might not finish.

Yesterday, was rough. More dealing with overwhelming anger. I want to jump kick things and punch stuff. I considered the walls, but I decided I like them the way they are. I tried talking myself into going to the gym for the hydromassager, and maybe while there I could bat my eyes at a staff member and get them to show me how to use the punching bags properly so I didn't feel so stupid wondering if I was doing it wrong, and if maybe they had gloves for rent, but I couldn't. I just felt to fragile for that public and adventure. (Scathing argument with my Mom over boundaries the night before, ending in scathing insult text messages, most of which I avoided reading or didn't even believe, but for some reason fighting with her always makes me feel so damaged. It leaves me wondering how I could possibly be sane and whole with that kind of relationship with her.)

Sometimes, I feel SO damaged, inside and out, and like even though I need people in my life it's hopeless because I end up just walking around with a big huge gaping wound for everyone to see and they all run... I don't resent the world so much for not caring anymore, I've made my peace with that. The social security judge seemed to think if I did things by myself, it was because I must be okay or people would help me. But there's no one to help me, even if I am sick as a dog, if I need to eat, I either have to go get food or make it. Even when my parents/sibling lived 2 blocks away... I've made my peace with that. But sometimes, when I'm dealing with so much it still hurts that if I reach out to my brother for example, no matter how much he says he cares about me and he'll be there and how he knows how I've suffered and how he thinks I'm brave...Well lets put it this way. Yesterday he texted me that if there was anything I needed him to do, like testify at my hearing, to let him know. Well they don't do witnesses, so I said, yes, if you could write a letter, that would be great. Silence. I sent him a couple more texts about it over the next day, and still, silence. Deafening silence. Another gaping hole, lol.

Well, anyhow woke up in better spirits today. Less angst. Hardly any, really. Lazed around watching DVDs to turn in for more, I didn't feel too bad, even though I woke up twice last night drenched in sweat. Viruses raging I guess. (I actually had to change, because I was freezing!)
But mostly ok...did notice I was sweating for no reason if I got up to pick things up, or tried to tidy up a bit. Took a shower cuz I needed it, and then had to lie down, because I couldn't stop sweating. Heart was acting up & on off, but not too bad, so when a new friend I made called to see if I wanted to do something (had to turn him down last night) I said yes, I was feeling okay...
Until... I went to my local box store, I had an internet delivery to pick up, a cart to see if that improves things with the laptop any to help me explore work options, and get some videos next door at the video store. Not a big deal, right? Wrong. Apparently walking to the back of the store and standing there for a couple of minutes, having the guy put the thing in my cart, and walking back to my car was exhausting. Had my movies in under 5 minutes but was starting to sweat standing in line for about 2. Lugged the 15 lb box inside and was weak, had to lie down. Heartrate nutty again. Got better after a 1/2 hour, 45 minutes or so, so I made the can of soup I'd grabbed while, knowing I wouldn't be able to wash dishes, ate, it was delicious. But it flared my heart up again. (Anyone who doesn't have POTS, eating can make it act up.) I realized I probably wouldn't be going out after all, and was dreading making the cancellation, but fortunately they beat me to it! Who says I don't make the best of things? How many girls do you know who appreciate being cancelled on? hehe.
Another of my friend from my old 'hood is close by at a concert, super close. I feel bad, I can't even invite her over, the place is an utter disaster. I contemplated tidying up, hiding stuff behind couches, picking up papers & such, but...considering until a couple of minutes ago I was having to carefully control my breathing, lying down almost flat, because my heart was pounding so hard...doesn't seem like the best idea. Now I just want to lie here and enjoy my movies...So that I shall do!