Monday, April 17, 2017

Waiting On the World to Care

This blog has sat silent for many moons. For eight full ones, more or less, I've been imprisoned in an exile of my own creation. Initially I was so angry about my health relapse I didn't know what to say, other than to hurl epic amounts of fury at my keyboard. I had no solutions, no answers, and nothing positive to contribute. So instead of spewing hate all over the permanent cloud of internet technology, I donned the hair shirt of self-flagellation and turned that anger inward. It's been a horrible, terrible, no good, very bad eight months.

As I got sicker and sicker, I got madder and madder. The angrier I became, the more I sequestered myself. I refused to talk about my problems or how I felt. It seemed pointless, like it didn't matter. Nobody could do anything about it or begin to comprehend my reality. There was just me, an isolated island of misery, who wanted to do anything but talk about being an isolated island of misery. But nobody understood that either. I'm sure I still looked like a woman, but inside I felt like an alien trapped in a body that was betraying me twofold. It was both an internal betrayal, given that I felt like a permanent case of the body flu defined my every experience, and an external betrayal because, of course, I appeared to be fit as a fiddle.

I didn't really hit bottom. It was more like when a plane's landing brakes fail, and it crashes intermittently into the ground for thousands of feet until the wreckage finally loses momentum and stops. Although utterly broken and totally destroyed, still I refused to talk. Eventually denying myself the human need to process my emotions left me deeply depressed. I stopped valuing myself. I stopped believing I was worth helping or loving. Physically my fatigue had improved from the debilitating stage, but I was too emotionally paralyzed to act. Logically I knew I'd been in worse places health-wise, but my twelfth year of living with chronic illness found me so mentally broken down it didn't matter. I was weak. Unfixable. Without purpose. Exempt from enjoying life. Totally to blame for my predicament. And completely clueless as to how to improve any of it. The sorrow pouring out of me was all I could feel.

It's been a few months since I started to believe in life again, save for a few gripping spells of despair that tried to convince me I wasn't worthy. As I gain my footing and begin to clean the wreckage left inside me from the hurricane of this relapse, I'm remembering some primal truths to help me move forward. First and foremost, I am on this journey alone. Nobody is going to fix me, nor are they going to give me permission to be sick. Seeking acceptance, understanding, or compassion is an emotionally painful waste of time that derails my forward progress.

But this realization is golden! For it allows me to take responsibility for me and how I choose to respond, and that's it. I am not responsible for the way people treat me, what they expect from me, or how they react when disappointed. While I am neither to blame for being sick nor a failure for not getting better, I am responsible for taking care of myself so I can make the most out of the life I've been given. When doing so offends the expectations others have of me, it does not release me from my responsibility to take care of me. For a woman who still subconsciously believes putting my survival above the happiness of others is selfish, this is very hard.

I have a huge hole to dig myself out of. It's been a year and a half since I got that first cold that lead to those two flus that ultimately derailed years of pretty remarkable progress. But if I did it once, I can do it again. It took me remembering that while I may always be an isolated, misunderstood island, whether or not I'm miserable is completely defined by me.

Thanks for joining,
Leah

Thursday, August 11, 2016

Fear of Forty


Last week I officially crested the top of that middle-age hill and am now on the other side. The stress and anxiety I felt during the last weeks of my 30's had me tied up in knots. Turning 40 was such a daunting prospect, especially considering where my life's at, that all I wanted to do was cry. And a few times I did. Like the date on my birth certificate swirled up all the anger and frustration over how little control I have over my life. Then it happened. I turned 40.

Now I'm laughing, because turning 40 is so much worse than being 40! 40 is, actually, glorious. Like the date on my birth certificate allowed me to accept everything about my life, and stop being mad at it. It helps immensely that I'm now getting a string of days between flares, and the flare that just ended yesterday didn't present itself with its usual buckets of anger. Sure I zoned out on yet one more TV series as I distracted my awakening brain with epic amounts of Scorpion Solitaire. What else is a person supposed to do when they're too fatigued to function? But I didn't get mad about the fact that three days of my life are just...gone. 

I just was. Where did this acceptance come from? Where did the anger that's consumed me for months just up and go? My husband reminded me this is how it happens, how I slowly start to stabilize and regain my footing. Funny, because I forgot. I didn't remember what it was like to feel a positive emotion, let alone not dissolve into puddles of anger anytime I felt anything. Whatever this is inside me they call fibro, it's a Beast. And it took the Beast releasing a little of its stronghold for me to remember how complex, dark, and all-consuming the Beast truly is. 

And also for me to remember what a blessed gift acceptance is. For if I accept my reality and work with it, not rail against it, I actually make progress. Eventually that progress is measurable, and I can look behind me and see some distance between me and the Beast's prison. Don't get me wrong, the Beast is still walking beside me, trying to take a swipe out of me anytime it feels like it, but I no longer live in its world. The Beast is living in mine. 

Thanks for joining,
Leah       

Saturday, July 30, 2016

A Different Me

This week the flare hit so hard I didn't know what was happening to me. All I could feel was more anguish and desolation than I could bear. The why's of life started swirling around my mind again, their utter uselessness distracting me with the unfairness of it all. I seethed hatred and anger at my life, the consequences of my existence, and mostly the prison my health has left me in. That was Monday and Tuesday. Miraculously on Tuesday night I slept, which was but a pipe dream the two nights before. On Wednesday I woke up and felt, dare I say it...human? Every inch of my body didn't hurt and I didn't want to hurl myself off the nearest bridge. Victory!

That's when I realized I'm getting better. See that flare state I just described above was my continuous reality for months...and months...and months. I've known for a few weeks now I was stabilizing, that all my juicing and resting and exercising was starting to right the broken-down vessel that is my ship. But I didn't realize how much I'd improved until I was thrust back into the netherworld of constant and pervasive fibromyalgia. 

So slowly I turn my sights forward. Gently I can start to reclaim the small parts of myself I had to bury deep inside to survive my last relapse. But my natural tendency is to race full-speed ahead to replace everything I lost. Quickly, like the less time my life is missing from my life, the more I can deny it was ever gone. But I built my house on sand before. Sure I may have physically managed my fibromyalgia, but inside I was still broken and flogging myself for allowing such a predicament in the first place. I was in so much emotional pain when I embarked on my fitness journey in 2013, all I could do was shove it all aside, plaster a smile on my face, and pretend it was real.

Somehow I have to figure out a way to do better this time. A way to stop pretending and make it real. Lasting and authentic. I've been given an 86th chance. So many patients never figure out a way to improve their symptoms so they can improve their lives. I have. But my greed and impatience in wanting my "healthy" life back fooled me into believing I could just push my way into it. I can't. I'm a different me, something I've accepted in the past but its never really stuck. But it's really about time it stuck.

Thanks for joining,
Leah         

Monday, June 27, 2016

The Perspective of Hope

I know a woman whose fourteen-year-old son is dying of cancer. He was diagnosed at age eleven and has fought an insane battle, but isn't winning the final round. Of course it goes without saying that the impact on the entire family has been utterly devastating. His mother is a gifted writer who provides incredible insight into the reality of their nightmare, and she recently wrote a post that utterly moved me. It was about the changing stages of hope. Four of them, to be precise, coinciding with the advancement of her son's cancer. It started with the natural hope that a person so young would beat the disease and sail into adulthood to live a full and rewarding life. But by the time she reached the fourth stage, it was all about hope for courage. More precisely, the courage to watch her child die.

Needless to say I was incredibly humbled. And ashamed. See the last six months have been living hell for me. I got really sick again and had to quit my job. I didn't realize how sick I actually was, however, until I quit that job and tried to resume my normal housewifely duties. That's when I fell flat on my face. I went through my own grieving process, which mostly consisted of anger and hating myself for being so sick it totally screwed up my life. When I was at my worst I even prayed for my own death, and raged at God for sparing my life when I had those two strokes six years ago. It would have been such a natural way to go, and would have saved me years of suffering...

I bet my friend's son would rather live every day of his life as a double-stroke, four-pancreas-attack, CFS/ME, and fibromyalgia survivor than die in his early teens of cancer. While I don't subscribe to the belief that someone else's problems invalidate mine, reading his mom's post was an incredible dose of perspective. I've been given the gift of life. A sick life, a life with a lot of concessions and heartache and sacrifices and surprises. A misunderstood life outsiders judge very harshly. And a life that really flippin' hurts. But the thing about life is it's not final. It's fluid and can change. If observing this family's experience has taught me anything, it's what a fool I was to wish away my life. For no matter what depths of despair I may sink to, there are probably quite a few people out there who would gladly take my living hell.

Thanks for joining,
Leah 

Tuesday, June 21, 2016

The Luxury of Sick

I've spent the last two week laying around doing nothing. I shouldn't consider it nothing, considering I'm desperately trying to rebuild my health. But instead of saying, "I've spent the last two weeks laying around healing," I fault myself for such a monumental lack of productivity. I feel guilty for not doing the laundry or putting on makeup or going to the grocery store-- things a normal woman my age should do as an afterthought in her thriving, busy life. Yet when I do venture into the land of normal, those simple activities comprise my entire day and usurp all my energy. As I watch my muscles turn to mush and tummy fat muffin-top over my jeans, I wonder if I'll ever be able to return to the gym. And for the love of all things holy, I pray I'll someday gain enough confidence to even glance at the book I bothered to write, let alone try and sell it.

Rebuilding from the splatter of hitting bottom is hard. It wasn't until I accepted, again, that this illness is in control right now, and stopped flipping out about how bad it sucks, that I was even able to stop my decline. It's a daily battle, to be kind to myself, to forgive myself for being sick, to accept the limitations placed on my life. And to remember I've been far worse off before, and it's gonna take some time to improve, but I will eventually get my fibromyalgia managed again. I just don't know when.

Patience is a wicked virtue. Not one I was given in my basket of traits, via either nature or nurture. I'm a driven, competitive, type-A, bossy achiever. When life pushes me, I push back harder. But this does not work with fibromyalgia. I can't "mind over matter" or "action breeds progress" my way out of this one, and Lord knows I've tried! I do know of people who have managed to find peace and happiness while so sick they can barely function. I, my friends, am not one of them. I've tried to be. At times I have been. Right now I'm actually succeeding. But once the pain lifts, and the simple act of showering doesn't wipe me out for three hours, or I wake up with a speck of hope or optimism in my heart, I start racing to the finish line. Well not this time. I'm working hard for every ounce of health I can find, and unwilling to give it away because I want more. No, this time I'm building myself up slowly, gently, generously. I'm respecting where I am, where I've been, and where I want to go. And resting firm in the knowledge that I only begin to heal after I give myself the luxury of being sick.

Thanks for joining,
Leah

Friday, June 10, 2016

Do Cocoons Hurt?

I always assumed the process of turning from a caterpillar into a butterfly wasn't a painful one. Sure, it seemed like a lot of work to spin that silken cocoon to wrap up in, and getting out seemed a bit tricky, but I never gave much thought to what actually happens inside there. I guess I thought it was a womb-like transformation-- where awareness doesn't exist and growth just happens. Turns out I was wrong. Inside the chrysalis the caterpillar digests itself by releasing enzymes to dissolve its own tissues. Then a group of surviving cells rearrange into a butterfly. Ouch. As a person whose own pancreas has tried to digest itself four times (pancreatitis), I only pray some opiates are mixed in with those enzymes to dull the poor caterpillar's agony.

Right now I'm picking myself up from my biggest fall in five years. It's been three months since I last blogged. In that amount of time I've been to hell and am hopefully halfway back again. Again. But every time I break there's a little bit less of me to put back together. My fissures are more obvious, missing pieces more pronounced. And the fresh memory of pain and anguish scathed so deeply into my psyche, I wonder how I was ever able to soothe the raw wounds in the past.

Half my battle was swallowing the bitter pill of acceptance. It took me months to realize I worked too long, my immune system got hit too hard, and I was diving into the unlivable hell of viral CFS/ME again. Too sick to exercise, but still chugging my veggie juice, I finally had to accept that holistic may keep my health from spiraling out, but once my ship has sunk it's not enough to tow me to shore. For that I need a doctor.

After a change in sleep meds and an increase in my anti-viral dose, I can see a fuzzy light at the end of the tunnel. But the woman peering out from inside the cocoon isn't the same woman who went in. And I don't know if I ever will be again. The darkness that filled the void of my soul isn't entirely gone. It almost seems to be a necessary part of me now. A part I want to hang on to. Reminding me of how much it hurts, how bad it can get, and if I am ever lucky enough to stabilize my health ever again, how very much I stand to lose.

Thanks for joining,
Leah