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!

Love and Other Drugs

Ah. I was going to write this fabulous post about the New Year and how great it was going to be (and it is!) but then I went & watched the movie Love and Other Drugs and I had to do a post on that instead. Great movie for us sickies. Apparently we can be insecure about finding a mate because of our illness and still find our very own Jake Gyllenhal! lol.

No really. I really liked the movie, not at all the silly, contrived romantic comedy I was expecting. (Not that those aren't fun, but thank goodness I didn't go see that one for my b-day with either of my parents, lol! On the other hand, it was also very comforting to see such an array of natural breasts, it turns out they really do exist, even in Hollywood!)

But my point was, it touched on some very real issues for those with chronic illness, a good reminder of what I keep reminding myself: that there is someone out there for everyone... A nice thing to keep in mind when the only guys to show any interest in you in the past year have been the plumber and the cable guy, lol! No, but seriously. When you're sick enough to where your life has been transformed by it...dating becomes a very tricky, possibly overwhelming, nerve-wracking experience, unless you're fabulously well-adjusted, which is why I've given it up altogether...for the moment. (To pre-empt my next post, I'm convinced this year will be fabulous, and I will begin to regain my life, happiness, and at least some of my health! Yay 2011!!)

I hesitate to say it's a lack of self-confidence; true insecurity in oneself. I think most of us deep down believe we are pretty fabulous and have SOMETHING to offer, and that the right person will see that; it's just that the harsh reality IS that being with a sick person is not as easy as being with a healthy one. Hell, it's not even easy being the sick person in a relationship, because we have to try extra hard at everything, and there's always going to be a bit of guilt, more than likely...but life is always going to be complicated, and there are never any guarantees, even for the healthy... Love is a very strange thing, and there are always going to be people out there that will amaze you, transcendent, amazing people who see what is invisible to the naked eye. Yes, I'm a cheesy, hopeless romantic, so sue me! :D

A Good Day

Today was a good day. I was feeling pretty good from the getgo. The Cognitive Dysfunction has for some reason, gratefully, been dialed down. Yes, I forgot how to give directions from the beach to here, which takes all of two streets (I swore there was a street in between, and couldn't remember it) and I forgot to mention my unit number in giving out the address, but as far as having my brain feel like a tightly twisted, cramped up pretzel, well, definitely some respite from that!

I had someone I barely know offer to do a very nice thing for me, taking me to a doctor's appointment, and then we drove around, had some grub, chatted, and saw a movie, and I got to see parts of OC that I either didn't know, or that were twinged with a veil of nostalgia for me, places that I hadn't seen in forever. All in all, it was a pretty great day, and it just goes a long way in reminding me why it's so good to try and get out and lead at least as normal a life as possible, insofar as being around people. I like to call it "being part of the world", because for such a long time after I got sick, I lived in a place where I had hardly any connections (aside from immediate family, which in my case can be toxic in high dosages) and sure, I would get out to run errands and things, but I felt like an outsider, set apart, watching the people go about their business, couples holding hands, mothers with their children, women with their girlfriends, people running into people they knew... Very normal, mundane, everyday things, but things that I did not experience, because I didn't grow up in the area, and I didn't have much of a chance to get to know people before Fibromyalgia felled me, keeping me from my co-workers, and out of the social circles I had, many of which were in other cities. (With gas as high as it was, as well, it became almost impossible to travel, even if I WAS having a good streak.)

When I lost my last job, I made a conscious decision: I was going to have to untie my identity from work, disentangle it if you will, and find something else to give my life meaning, purpose, and joy. I realized that the key to this, was creating a social life, surrounding myself with friends, and a sort of family (hopefully less dysfunctional and more supportive than my real one) to occupy my time, give me joy, laughter, things to do, and to offer the gifts I had to give as well. I finally realized that my stubborness in repeatedly insisting on returning to work was doing me about as much good as banging my head against the wall, which really, was very silly, because I wasn't making enough to live off of anyhow, and I was just setting myself up for failure, and at least as bad, letting down the people who depended on me at work, pretending everything was fine, when I could barely get from day to day.

I thought I came to this realization in time, but it was still a tough blow, and I was already weakened and off kilter from the extreme stress of trying to hide my Cognitive Dysfunction and otherwise compensate for my deficiences at work. I ended up in bed, as sick as I'd ever been, with weakness, chest pain, trouble getting air (not asthma) heart palpitations, low blood pressure that dipped whenever I so much as got up from a sitting position, resulting in near blackouts that left my head pounding every time. (Which I know now was Autonomic Nervous System dysfunction, trust me, it may sound like anxiety, but I know anxiety...) I was terrified, so much so that I was willing to forego the comforts of home and stay with my parents in their cramped little apartment for two weeks. Giving up my little part-time job was a blow. But not knowing if this was a passing thing or if I, like many FM/CFS patients before me, would be like that for months, and not knowing how to find the help I needed (Western Medicine failed me miserably that time...one cardiologist told me what I needed was exercise, which, as weak as I was, losing electrolytes like crazy, and as my holistic doctor later proved, with some major balance problems) left me feeling helpless, and very depressed. (Another cardiologist, doing a tilt table test, nearly put me into cardiac arrest after injecting me with a drug. Next thing I knew, I couldn't breathe, was seeing red, my heart felt like it was about to explode from my chest, and it seemed to me, he was trying to choke me...turned out to be carotid artery massage. He didn't finish the test, or explore why the drug had that reaction on me, just declared the test negative, despite my extremely low pressure, and it dropping even lower at the begining of the test. Much later on, I would find out he hadn't followed the protocol correctly, and when my doctor called to ask him how the test could be negative if it hadn't even been completed, he responded that he was a CARDIOLOGIST as if this alone excused him from having his verdict challenged.)

But I came back, with the help of a wonderful holistic doctor who gave me the luxury of credit, and his careful, caring expertise to nourish my adrenals, provide the correct nutrients, correct my metabolism, and gently manipulate my spine to take care of the rest. And then I slowly set about putting the wheels in motion to create a life worth living, and figure out who I was if I wasn't the overachieving, hardworking, materially succesful young woman I'd had every intenion of, and was on the road to being. And that's where I was 6 months ago, content with the much fuller life, although still putting up enough of a front so most people would see something acceptable: a healthy, vibrant, intelligent young woman taking the road less travelled. At home, I nursed the overexertion (this time, without any choice, my financial straits were dire) grasped at anything to keep me from losing my home, and jumped through a million hoops to get medical care, medications, and any other help I could find to keep me afloat. I was exhausted, but at least having friends to call up on Friday nights and go blow off steam with helped replenish my spirit.

Then I moved, and even with the best of plans, the exhaustion seemed to catch up all at once, and life started unravelling. Soon the walls of isolation began to close in and enfold me so deeply that I thought I would suffocate, but inversely, the world outside just seemed too overwhelming and I found it hard to imagine a place in it for me, until lately. Lately I've begun to venture out again. I've been to a couple of support groups, and that has been wonderful, because although I had tried to socialize with people my age, I ended up confused and overwhelmed trying to decide how to present myself, what to reveal, or not. I desperately wanted them to believe I was one of them, the thought of letting them in on an inkling of the truth terrified me. And I think this signified that I was still in denial. Some people might say that sharing that I have a chronic illness with people I've just met might be TMI, but it's such hard work, especially when the Cognitive Dysfunction is at work, keeping up the facade is extremely difficult. And when just getting yourself out there at all takes such effort to begin with...
Well, eventually, I hope that I will be strong enough to completely be who I am to "normal" people. I will be able to say to tell people what I struggle with when relevant, and even let them see it, something I have major issues with. (Put me in pain, exhausted, or otherwise ill in a social situation, with no access to pain pills and no way of escaping, and I have been known to freak out. It's not in my nature to showcase my weakness, sometimes even talking about it is easier, but having witnesses...)
And if for some it's too much to deal with, that sucks, but oh well, right?
I look at pictures of me with friends, and I understand how the dissonance of those images and the reality of my life, so it would be hard to blame them. I look for things that bring me joy and laughter, and when I find them, I grab them by the horns and hold on as tight as I can, and that shouldn't warrant any excuses. Plus, I can't spend my life feeling like I have to prove that I'm sick. I have enough work, right?

Fibro in itself may not be my life, but it permeates it. It's unpredictable, always changing, takes loads of mental energy just to manage because you must always be planning ahead for the scenarios that may impede the activities of day to day life. Each day from the moment you wake up, it takes will power and effort, and consciousness of it is inescapable.

And that's why having people who understand because they are living the same battle can be such a gift. If you even have to explain something about your limitations, at least you know that they understand, even if their experience has not been identical, there's not that frustration of trying to communicate something that someone healthy may never (through no fault of their own) understand, or wonder whether they are sizing you up, and judging whether or not you're crazy or exaggerating or seeking attention, or if they can see past the image you are so carefully presenting to them, the nice dress, carefully done makeup and hair, etc., because it's one thing you can still do feel like a normal person...and even that works against you. (Not that it can't work for you too, of course!)

So I encourage all of you, and anyone with any life-altering chronic illness, to get out there, find a support group near you, check Meetup.com, and if you can't find one and you're up for it, consider starting your own! The Internet is a great place to find a network of supportive people, I would never give up my Internet Fibro Friends, who have shared my day-to-day trials year in and year out, and victories from afar when this was all the world I had, but being around real, live people and feeling like "part of the world" seems to me to have a whole other slew of benefits. Even a "normal" human being cannot thrive without human contact!
And for you normals out there, if you want to help, don't forget, it's all about the little things. Just stopping by to say "Hi", to go for a drive, or hang out and watch TV can be enough to make those suffocating walls retreat and help a friend or loved one realize that they are indeed, " part of the world"!

The Journey

I was thinking...it feels like a lot of my posts are coming off as a bit angst-ridden.
Well, writing honestly about Fibro tends to bring that out I guess. It's hard having an invisible, unpredictable illness that no one gets, and that has wreaked havoc on your life. But this blog is supposed to be about The Journey WITH the illness. Life, as a whole. And the freedom to be honest about the role FM/ME play in it. But not just about IT. There's more to it than that. More than the struggle.

I guess I'm afraid of coming off as pessimistic. That's not me. Things have been tough recently. I thought having a place to live in peace would make everything okay. But it turns out, besides leaving behind a life that took me a lot of effort and time to build, for the first time in a couple of years, I wasn't so busy trying to survive that I could ignore things undealt with, turns out they were just lying there, beneath the surface, waiting, and once I had a chance to rest, there they were. Actually, I think survival became my thing, and not having to drive myself so hard sounded great, but in reality, you get used to things, even hard things. Without having to or being able to do that, it was like getting sick and starting the grieving process all over again.

I'm not where I planned to be in life. I can't even pretend, like I did before I moved, that I have things under control. (The truth was, it was a shakily constructed facade, mostly for other people's benefit.) Things have been dark lately, but there are hours, sometimes days, where I again see the light and the world is good and full of promise and hope.
So hopefully, that will show through a little more in the future :)