New beginnings

Something surprising happened to me today, for the first time in possibly my entire life, I found myself looking down at my body and loving what I saw. On the day before my 32nd birthday, on the day of my mother’s 62nd, I finally figured it out.

A quick recap, for those of you new to my recent life: At 27 I was living in Chicago and was diagnosed with Fibromyalgia. I ended up losing pretty much everything, health, apartment, job, hair. Just about the only thing I gained was weight. A ton of it. Decided to go back to school for animation, chased that dream to LA, ended up falling in love with Long Beach, falling in love with a sailor, feeling physically better in the warm climate, becoming more active, losing a ton of weight, marrying, moving to a horrible swamp for 2 years, becoming a hermit, gaining it all back…when all of a sudden BAM. We get orders to paradise. Our first choice, Hawai’i. The only place we can imagine loving more than Long Beach. Two days before our wedding anniversary, three weeks before my birthday, we land in Honolulu.
My husband had three weeks of leave so we spent that time house-hunting, snorkeling, boogie boarding. We found a house, started the paperwork, hit the beach every day.  We’ll be staying in a hotel for two months at least, the earliest we expect to close. So we’re here but in no way settled, it still feels like a vacation that will have to end. Tomorrow he goes to work, I celebrate my birthday and begin to figure out what my normal life will be.

Back to why I had my epiphany, and what prompted it. For my birthday my husband got us scuba certification courses and it required two full days of actual diving and four of study. The study part, no problem. But when it came to the diving I had my quiet fears about it. I’ve started to lose weight and get in better shape, but I’m not back to normal by any means. Most physical activity is difficult because most of me hurts; as a general rule at any given time at least one joint and as many as all of my joints and possibly all the rest of my body is hurting. Every moment, every single moment of my consciousness I am feeling pain to some degree. For the most part I have learned to cope with it, (it helps that I allow myself 5 cheat days a year when I get to complain), so it’s manageable. Not fun, but I won’t die. More on that later.

So scuba, one of the most amazing and beautiful things I’d ever gotten to do, would be hard to lose to this stupid, ugly disorder. But I put my heart and mind over my body’s complaining and I triumphed! This body that has seemed to betray me so often, (side note, for years I was a ballerina, which I had to give up when I developed bursitis and this nasty habit of having my hips randomly pop out of joint), might not be a totally lost cause! I know as I start to lose weight everything will get easier, but even now, at my worst, I can still do this activity that I love. So, after returning to our temporary apart-hotel I found myself exhausted but awake as my husband napped before a celebratory steak dinner. I decided to sit out on the balcony to enjoy the sunset and found myself looking down at my body and, incredibly, liking it. I found I actually love it, all its scars and stretch marks, its funny tiny hands and feet, and all its artwork. I love that each tattoo encompasses an event, a memory, a chapter of my life. I love that my favorite ones, and I think the most beautiful, came at times that I was in ugly places, either personally or physically. I love the entire package, finally. Credit where credit is due, this is in huge part because my husband has opened my eyes. By loving this body and this woman inside it, seeing it as a whole, body completely inseparable from mind, he has let me stop seeing any of it as a flaw. It is all just part of me. He loves all of me so completely that I have started believing him, even beaten up, broken, exhausted, chubby, in miserable pain, I believe that I’m beautiful and worthy of that love. So now, after 3 years with him, with constant, overwhelming and patient love, I finally have internalized it. I look down and what I see is beauty.

This is such a new sensation, mainly because the fibro has so derailed any positive thought I may have had about myself. It isn’t just the positive thoughts, but almost any thought at all, the fibro takes precedence over everything, it forces you to focus on it, always keeping you off balance and in pain. It is like a tightrope walk on fraying rope, but I no longer feel so angry and frustrated by it. I have come to accept that this is just how my life will be and that it will be a balancing act, some days I will be able to handle anything and everything, and some days I won’t. The difficult part is that I will never be able to completely anticipate the effects of a certain activity, because it’s not just the activity itself that determines the fibro’s response. It’s also hugely affected by the current amount of stress I’m carrying around, that I may be completely unaware of. Because it’s not just bad things that cause stress, but good things too. Moving to paradise is possibly the best thing that has ever happened to me, after meeting my husband, of course. But it is stressful beyond belief! Buying a house in paradise, exciting, right? Yes! Stressful? Hell yes! So basically, what that all means is that each morning is a surprise. All these different variables, both known and unknown, add up to make my day. I could wake up and feel fantastic, raring to go, or I could find myself waking up in so much pain there is no choice but to stay in bed 95% of the day. I’m extremely lucky that my husband is able to support me working as a freelance artist and I can afford to take a day off if needed, and there are even a few things I can do from bed, ảla Frida Kahlo. That luxury is probably the most important factor for managing this disorder. Because even after waking up, there are no guarantees as to how the rest of the day will go. At any moment my knee will just decide that nope, it doesn’t want to just quietly exist in the middle of my leg, it wants to torture me from the inside. Or my elbows will decide I was bending them slightly too much and take it out on me as if I had murdered their entire families. (My joints all have families that I regularly threaten in horrific fashion when they act up, it doesn’t really do anything but I had no luck with begging either and this is more emotionally satisfying). Anyway, generally once a joint starts to act up then that’s it for the day, there is no getting out of that pain. I can shove it aside as much as I possible, but every single decision for the rest of the day has to factor it in. So after spending the whole day either mostly pain free or mostly painful, you’d think ah, at least she can sleep and start over again tomorrow! And that’s where you’d be wrong. Because here again, there are no guarantees, no way to know how I’ll sleep. I could be exhausted and find myself tossing and turning for hours before finally dropping off around 4am for twenty minutes, and that might be all I get. Or I could sleep the whole night through, if I’m really lucky. Guess which happens more often. And of course, if I don’t sleep well, then that turns up the pain automatically for the next day. Starts me off in bad shape and leaves me no way to get better. So I spend the whole day in pain, finally get to bed, can’t sleep because everything hurts. I have never been able to sleep straight up and down, I curl up, and that means my elbows and knees are bent, which means they feel like they’re on fire after 5 minutes. It’s hard to sleep when they are that bad, (and blatantly ignoring my threats), so I spend another night with little to no sleep and wake up even worse than the day before. And it starts all over again.

That’s why any frustration I feel with this disorder is largely warranted, because that cycle is my every day. It’s possible to break it, for a time at least. With luck, and a hell of a lot of willpower. But it never completely goes away, that threat is always there looming over my shoulder. Or in my shoulder, I guess. Some days I win, some days the fibro does, that’s just the situation I am in. Every day I do everything I can to lessen my pain, and I hope. I find that the more I focus on the good the happier I am. The happier I am the less stressed I am. The less stress, the less pain. And so on and so on. I can turn that vicious cycle to my advantage. Moving here was the best thing I could have done, so many different factors fall in my favor. The climate is perfect, warm all the time, tons of sun, beautiful to look at. I am vitamin D deficient so living somewhere that it is pleasant to be outside and where it is sunny constantly is exactly what I need. But beyond that the Hawaiian spirit is a huge factor too. These are a people who understand focusing on the positive in life, slowing down and enjoying all that it has to offer.

So that’s why I started this blog, to share my thoughts and my experiences, the lessons I’ve learned about life in general and life with fibromyalgia in specific. It will be a bit of a hodge podge because that’s just how I am, but I will consider it successful if I can make anyone smile and laugh. And hey, if you learn something about what people suffering from fibro are going through in the meantime, that’d be pretty cool too.


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