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"!