Depression: My own story

Depression is everywhere lately; from Facebook to the nightly news, its hard to look at anything without some mention of it popping up. The recent, and truly tragic loss of Robin Williams to suicide has put depression in the spotlight as the latest must discuss topic. Depression should be a huge topic, since it affects pretty much everyone at some point in their life.

Like most things, depression varies a bit from person to person; some people only experience it once, while others live with it on a daily basis.
Chronic illnesses often go hand in hand with chronic depression. I’m not going to go into all of the clinical/scientific information on depression, but if you would like more info, here’s a good place to start: http://m.helpguide.org/articles/depression/depression-symptoms-and-warning-signs.
Instead, I’d like to focus on how depression affects me, and how I’m learning to cope with it.

For me, depression has two parts: “the drain” and “the whisperer”. (I realize that to some, this may sound somewhat insane, but I’m doing the best I can to describe the inside of my own head, so bear with me.)

Not so long ago, these two parts of depression were constantly swirling around in my head, simultaneously. I lived my life in a fog and mistakenly assumed that this was just how my life would be. Thankfully, I was able to break that cycle. I still have bouts of depression, but they are usually brief and I know that eventually the sun will break through the clouds. It was only recently during one of my “cloudy” days that I was able to put what I was feeling into words; that is what I am trying to share with you now.

It usually starts with the drain. It feels as though there is a hole in my chest; a cavity that is slowly pulling all of the goodness and color out of my life. Think of trying to fill a bucket with a hole in the bottom of it; you can keep putting water in it, but it will never stay full because it’s draining just as fast as you fill it. That’s what “the drain” feels like. The good things in life create a plug that blocks the drain, but even when it’s not sucking the energy out of my life, I can feel it sitting there, right in the middle of my soul.

When the drain has taken all it can, that’s when the whisperer shows up. It’s almost like all of the happiness and energy that gets pulled into the drain gets twisted around and warped into something dark. Out of that darkness comes the whisperer. She sits there inside my head constantly whispering to me about all of the negative things that have happened in my life.

“You’re not good enough, you’ll never be good enough”

“This is all your fault”

“Why fight it? You’re never going to win”

Over and over she whispers these things, (and worse), in my head, no matter what I do, I can’t block her out. You may be wondering why I don’t just think of something else or simply stop thinking about it… It’s not that simple; I’m not actively thinking these thoughts. It’s like having the radio on in another room, (except this room is locked and you can’t get in to turn it off), you may not be actively listening to it, but you can hear it.

I think the worst part is that when I start feeling this way, it affects the people around me. I get grouchy and I withdraw. I don’t like to talk about it; I don’t think I’ve ever actually said “hey honey, I’m feeling depressed today”. I know that I should, but the words just stick in my throat, so I say nothing. Writing the words here is a start.

I used to believe there was nothing I could do about these episodes; that all I could do was wait for the whisperer to go back to sleep and the drain to get clogged again. I know now that I *can* fight it. It’s not easy, but at least I know that I can break the cycle by getting active, specifically, a good long walk or jog. (Exercise is what helps me, I’m not recommending a cure all for everyone!) Finding the energy to fight is probably the hardest part, between the drain and the whisperer, it often feels like I have nothing left to give. I would be lying if I said that I get up and fight every single time. Even now, there are days where all I can do is hang on until the clouds go away on their own.

Once I get myself moving, I have to figure out how hard to fight. Do I walk/jog until I can’t take another step or do I need to pace myself? Sometimes, just the feeling of my feet hitting the asphalt is enough to lift my spirits; other times, it takes a full throttle, pavement punishing run to clear my head. It’s hard to tell what will make me feel better, and since my depressive swings can last for days, I have to decide how much is enough. If I fight too hard at the start, I won’t have the energy to keep fighting later and then things just feel so much worse. It’s a challenge, but one that is definitely worth facing.

When all else fails, I just remember the Little Engine that Could: “I think I can- I think I can- I think I can…”

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The (Lion) King & I

“Looks like the winds are changing.”

“Ahh.. Change is good.”

“Yeah, but it isn’t easy. I know what I have to do, but…”
— The Lion King

Once upon a time, if I wasn’t feeling well, I curled up on the couch and watched The Lion King. That was it. I didn’t cook, I didn’t tidy up around the house; to be honest, I barely moved from my spot, unless I had to. While The Lion King is still my favorite comfort movie, the winds have changed, and so have my rituals.

Recently, I was discussing fitness and overall health with an old friend of mine; we were busy talking about what keeps us motivated to stay active, and I couldn’t stop myself from absolutely gushing about my Fitbit. It was during that conversation that I realized just how much this tiny little device has influenced my everyday life. For the last year or so, I have worn it every single day. From the moment I get out of bed in the morning, until the moment I lay down at night, my Fitbit is, (literally), attached to my hip.

Some of you may be wondering at this point, what I’m even talking about, so before I go any further, let me explain what a Fitbit is. Basically, it’s a fancy pedometer: it counts my steps. Yes, you can go to the store and buy a basic pedometer for about $10. I tried that myself, but I wasn’t impressed; the cheaper devices are not very accurate and don’t provide enough information. What is it that makes the Fitbit so amazing? For starters, it syncs to my phone and puts all of the data it collects into an easy to read chart. At a glance, I can see precisely how active I’ve been. That little bit of information has changed my life.

Health experts recommend that adults get in 8,000 to 10,000 steps per day. When I first started using the Fitbit, I could easily go an entire day without reaching 1000 steps.

Before the Fitbit, I knew I wasn’t as active as I needed to be. I knew I was lazy and that the only way to describe my lifestyle was “sedentary”. The Fitbit took that information and gave me hard, visual evidence. What I saw shocked me. Like I said, I knew I was lazy, what I didn’t know was just how lazy I had become.

Adding the Fitbit to my routine was simple, all I had to do was wear it. It counts my steps, including flights of stairs and translates that into miles and calories burned. Once you sync the device to the website or your phone, it puts all of that info into a lovely little chart that shows you everything you need to know. It will also sync up with other apps, such as My Fitness Pal, so you can see your calorie intake and burn all on one page.

There is one other feature that I find particularly effective, even though I am slightly embarrassed to admit it: green smilies. When you hit your goals for the day, you get little green smiley faces next to the ones you reached. It’s a lot like getting that gold star at the end of the school day, and I often find myself doing laps around the house or even the grocery store just to make sure I get my smiley for the day.

I realize that this post probably sounds an awful lot like a product plug, but it’s not. This post is about change and just one of the ways I motivate myself to keep pushing. Change isn’t easy, (especially when you feel like the whole world is against you), but it can be done and now, I’ve got proof! I can’t say that I’ve spent the last right years fighting; in truth, the majority of my fight has only been in the last year and a half, but I wanted to show you where I started.

This was me in 2006.

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Here I am in 2011.

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And finally, this is me now.

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Keep fighting!

Time to get moving (again)!

It’s been a while since my last post, so this is me trying to get back in the swing of things. The hardest part has been just sitting down to write. The longer I put it off, the harder it became to find the words, so here goes!

To be honest, the main reason I have been quiet lately is that I really didn’t have anything positive to say. I’ve spent a lot of the last month packing and then moving into a new place, and not as much time as I should have on my personal needs. I’m still trying to stay active, but I’m not as active as I had been, not by a long shot. Even on the days I do manage to make it outside for a walk, it’s a struggle to hit my 10k step goal. The heat has a lot to do with this, but it’s not the only reason. In all seriousness, the heat is just the excuse I use to cover up the real reason I’m less active: I’m just too tired.

As much as I hate to admit it, the fatigue is kicking my butt. I just don’t have the energy to maintain that level of activity. I know that if I can get moving again, my energy levels will start to come back up, but I’ve fallen off of my own wagon and I’m struggling to get back on it. To anyone who hasn’t dealt with a chronic condition, it sounds like I’m making excuses for being lazy. I suppose that in a way, I am, but the important thing to remember is that I have not given up.

Yes, I feel like I’m back at square one, but this time, at least I know not only what I have to do, but also that it works. This isn’t something new to me. I know that if I can push through the initial pain and exhaustion things WILL get better.

I’m not entirely sure what caused me to stumble and then fall, but I’m pretty sure it started with a flare up. I recently gave in and had another round of trigger point injections in my upper back, this time with Botox. The fact that I felt it was necessary to even have the injections was a huge blow. I had been doing so well on my own and then WHAM! Out of nowhere I get hit with a flare up so bad that I actually went to my doctor and *requested* trigger point injections.

For me, trigger point injections have always been an absolute last resort, mostly because I hate them. They’re incredibly painful and they always take me out of commission for a few days, but every now and then, I reach a point where the pain is worth it to break the flare cycle. This was one of those times. Ironically, I had just finished typing up a blog post celebrating a full year injection free… No, you didn’t miss a post, I never published it because I got distracted, (and more than a little depressed), by the flare up and subsequent injections.

I mentioned earlier that my doctor added Botox to the trigger point injections, this was completely new to me. The idea is that the Botox basically freezes the muscles around the trigger point, keeping the knots from reforming for a few months. After doing my own research, I decided to give it a go. Was it worth it? I’m not sure yet. I do know that once the anesthetic wore off, these injections were much more painful than normal ones. My back was stiff and sore for over a week afterward. The flare up did break, but it remains to be seen whether or not the Botox has actually helped.

So, that’s the last month or two in a nutshell. Now that we’re all caught up, I am excited to say that I’ve got some new motivation to get moving again. Yesterday, I registered for the “Inaugural Harbor Lights 5k”, which will take place at the end of November.

If I want to beat my previous 5k time of 00:38:58, (which I totally do), I’ve got to get to work. Right now, my (comfortable) mile time hovers around 15 minutes, if I go full tilt, I can drop it to around 13 minutes. My goal for November is 10 minutes… Looks like it’s time to dig out my Couch to 5k app again!

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The Plan, One Year Later

Three hundred and sixty-five days have come and gone since I first decided to share my story. In that time, I have walked, (and even jogged), over 1,600 miles, lost about 35 pounds and 4 jeans sizes. In short, over the past year, I have taken my life back; fibromyalgia, while still an undeniable part of my life, no longer runs my life.

If someone had told me a year ago that I would make the changes I have, I would have said “that’s simply not possible”. This time last year, I was a wreck, in every sense of the word. Physically, I was in constant pain, over weight and completely exhausted. My emotional state was even worse; I was in the throes of a deep depression, suffering from panic attacks and utterly hopeless about my situation. My marriage had fallen apart and my other relationships were starting to fray as well. I felt completely powerless to stop any of it; I had lost control of my life and I honestly believed that I had no choice in the matter. I had spent so long allowing the fibro to dictate my actions that when my life fell apart, I had nothing of my own to cling to. I felt like a victim.

It wasn’t until I began to seriously contemplate suicide that I realized how wrong I was. There was one thing that I hadn’t yet lost: myself. I am, by nature, a fighter, but I had forgotten that. Somewhere along the way, I had stopped fighting and simply accepted the idea that fibromyalgia was going to run my life. That idea spread through my mind like a weed, choking out any hope or motivation I had. Thankfully, right when I needed it the most, I found the strength I needed to save myself. In that moment, I realized that the only thing stopping me from living my life on my terms was ME.

It was such a simple idea, but it was more powerful than anything I have ever experienced. Using this new understanding, I came up with a plan to heal myself. No more waiting around for someone else to come along and “fix” me, no more feeling sorry for myself. If I wanted my life back, I was going to have to fight for it.

Coming up with my plan was easy, putting it into action, however, was another matter altogether. Not only was I having to work against what my own body was telling me, I had to fight my own self doubt and the doubts of others. Most of my family and friends were incredibly supportive of my new outlook; unfortunately, a few of the people I had expected to be the most supportive turned out to be the most critical. At times, it seemed as if they were trying to undermine my efforts to change, going so far as to plainly tell me that they believed I couldn’t do it and even saying that despite my efforts, they saw nothing worth being proud of.

Typically, this is where people say things like, “I don’t care what other people think of me” or “their words can’t hurt me”. Well, for me, that’s not true. I do care, (probably way more than I should), about what those close to me think about me and I have always been overly sensitive about what other people say to me. Add that to my already delicate emotional state and you’ve got a recipe for a total breakdown. There were so many times that I wanted to give up, so many times that I very nearly did. It took me awhile, but I eventually learned to turn that pain into fuel. I learned to “punish the pavement” rather than myself. After awhile, that pain turned into anger and I used the anger to further fuel my fight. Going through that was Hell, but I see now that those doubts and cruel words only made me fight even harder. So, thank you, for helping me to see you for who you are and for helping me find the strength to get past my own barriers, now please show yourselves out of my life*.

*(For the record, my original statement wasn’t nearly so polite.)

Flash forward to today: I am still here, still fighting and better than ever. I am active, healthy and best of all, happy. More importantly, I can feel the shackles of fibromyalgia falling alway; I am almost entirely pain-free. I do still have occasional flare ups, but they are usually brief and nothing at all like the debilitating attacks that would keep me in bed for days; no more giving up things I want to do because of pain.

I never imagined that I could live without pain as the center of my universe, I never even dared to dream that I might live something like a “normal” life. The success I have experienced over the last 12 months is beyond anything that I could have hoped for; in my own mind, it’s nothing short of magic.

Of course, the problem with magic, is that it is not free; to borrow a quote from Rumplestiltskin, “magic always come with a price, Dearie”. So, what is the price I pay for this particular brand of magic? Hard work and self-discipline. The simple truth is that keeping myself healthy is literally, a full-time job. I have to make sure to stay active and I have to pay close attention to what I eat, every single day. Sure, I have my “off” days, but they are few and far between. I cannot afford to sit on my butt all day and just eat whatever I want to; my body is quick to point out when I’m not doing what I need to.

One of the things that I have learned over the last year is that counting calories is not enough. I’m not even talking about for weight loss, I’m talking about simply maintaining a balanced, healthy diet. My daily calorie budget right now is around 1600 calories; well, 1600 calories of cookies, chips and pizza are not the same as 1600 calories of veggies, fruits and lean protein. In order to keep my system happy, I eat 4-6 carefully controlled meals every day. The amount of thought and effort that goes into my diet alone can be overwhelming, as I find it difficult to come up with different ideas that are healthy, tasty and easily fit into my plan.

On top of that, I have to make sure to keep moving. My body has gotten used to moving and the pain will happily take over if I’ve been sedentary for too long. My goal is 10k steps a day (about 5 miles), which at a normal walking pace for me would take about an hour and a half of solid walking. I prefer to break that up into smaller, easier to manage chunks throughout the day, which like my meals, takes a fair amount of planning on my part. 10,000 steps is a lot, believe me, I know. While I have learned to enjoy walking and being active, I don’t always do it because I want to. I don’t exercise because I feel good, I exercise in order to feel good. There’s a huge difference there, and it’s sometimes hard for people to understand, but I can’t put enough stress on the idea that it is absolutely necessary to stay active even when it hurts because eventually, the activity will make the pain go away.

I cannot escape the fact that I am sick; I know that no matter how badly I want to, there are always going to be things that I am unable to do. For instance, I would love to be able to get back into the classroom and teach again. I know my limitations. I know that I cannot maintain my current level of health (and happiness) AND take on a regular job. I understand that there are many, many people out there who are capable of doing all of these things and more on a daily basis, but I have to accept the fact that I am not one of them. I simply do not have the stamina to do it. Maybe one day, I’ll find a way around it, but for now, my “job” is taking care of myself.

You know what? I am ok with this.

The road ahead

I’m not afraid.

I keep repeating the lyrics to “I’m not afraid” in my head, as part of a thus far, unsuccessful campaign to convince myself that I am unafraid of the future. The fact is, I am utterly terrified. Here I am, 30 (which, I know is not so very old, but it’s scary territory nonetheless), fighting a constant battle against an invisible illness and now, soon to be divorced. There. I finally said it. I’ve been hedging around that particular bomb from the very first entry on this blog. At first, I didn’t want to admit it, because admitting would make it real, and I still had hope that it could be prevented. Even after I realized that my hope was sorely misplaced, I still couldn’t find the courage to make it real. Now, the time has come for me to come to grips with my own reality: in the coming months, my husband of 6 years (8, if you count the nearly 2 that we’ve been separated), and I will be signing the papers to make our separation an official divorce.

I know that this sort of thing happens every day and that I am neither a special case nor an exception to any rule, but that knowledge doesn’t make the situation any less Earth shattering. When you take in to account that I have spent nearly half of the 30 years that I have been alive loving this one person, the loss seems to become even more devastating, at least in my mind.

My husband and I were high school sweethearts, we met during my freshman year and we just clicked. We stayed together through high school & college. My mom refused to pay for the wedding until I had finished college, so I rushed through my bachelor’s degree so I could get to the altar. We got married in the summer, barely a month after I graduated from

He was with me through that first car accident and then the subsequent years of trying to figure out what was wrong with me. He held my hand through the diagnosis and the treatments, the mood swings and the weight gain. When the fibro got worse and I couldn’t work anymore, he was right there by my side, fighting with me. We weren’t perfect, we fought, just like any other couple. We had our issues, but we worked through them together. What we didn’t expect was the drastic toll my illness would take on the both of us.

When I was in pain, he suffered; it tore him apart to have to sit idly by and watch me in agony. After I was forced to stop working in 2008, I fell into depression and unwittingly dragged him right along with me. He did what he could, but I so entrenched in my own misery that I couldn’t see anything else, and we just started to fall apart.

*For the record, I am not blaming myself or my illness for the destruction of our marriage. The illness put cracks in the foundation of our relationship, but we both had an active hand in tearing them open.*

The fight to get me on disability put even more stress on our marriage. He was working two jobs just to keep our heads above water, and there were still times that we went under. I was a miserable wreck, I spent a large portion of the day laying in bed or on the couch, in so much pain that I felt like I couldn’t even move. The house was in a constant state of disarray, which only made the both of us even grouchier. He would come home and ask me what I had done that day, and I would get offended because I felt like he was accusing me of being lazy. One of us would snap at the other and next thing you know, we were fighting, again.

I tried to pick myself up, I tried to find a hobby to keep my mind off of the pain, but really, all I ended up doing was leaving more messes all over the house. Our parents did what they could to help, they bailed us out financially more times than I can even remember. They even came over to help clean up or do yard work. Was I appreciative? No, I am ashamed to say I wasn’t. I was mortified that they felt like they had to come clean up my mess, (even though I knew they were only trying to help), and I withdrew even further into my shell.

Every time my husband would try to get me out of the house on the weekends or when he had a day off, I resented it. I felt like he was ignoring how much pain I was in and that he was only being selfish. The reality is, he was only trying to make me feel better, but I shoved him away at every attempt. This cycle continued for at least a year or even two, and slowly but surely, we grew apart.

I don’t remember when it happened, but finally a close friend took me aside and flat out told me that they thought I should get a job. I’m not sure what it was about that particular conversation, but it shocked me into opening my eyes a little bit. I started to see what I was doing both to myself and the people around me. It wasn’t enough to spur me into action, but it at least got me thinking. Somewhere around this same time, my husband decided he wanted to lose weight, so we bought an elliptical machine and started changing our eating habits. I wasn’t really in the mindset to do much, but I wanted to support him, so I did what I could and managed to lose about 15 pounds.

I didn’t realize it at the time, but the first bit of weight loss is probably what changed things for me. I started to feel better, things didn’t look quite so bleak. Unfortunately, by this point, most of the damage had already been done. Suddenly, it felt like we couldn’t do anything together without getting into an argument. We were both feeling frustrated and even unsatisfied with each other and it showed. I don’t remember what pushed me to do it, but one day I had finally just had enough and I left the house.

At the time, it was only meant to be a temporary separation. We both needed some space and to be totally honest, I expected him to be so miserable with out me that he would beg me back in no time. I was wrong. In truth, during those first few weeks of being apart, we both discovered that we could breathe a little bit easier. I’m not saying the separation instantly proved that we should be apart, it didn’t. We were still talking on a daily basis and we still saw each other frequently. It was excruciating. Despite the fact that we were both completely heart broken, it wasn’t enough to bring us back together. I think that at some level we both felt like the pain of being apart was better than the misery of fighting all the time.

At first, we kept it quiet. We didn’t tell anyone except for one or two close friends that we had separated. We even went so far as to visit our parents together so that they wouldn’t know. Telling people what had happened would make it real, and we were both still in denial. I think we’d been separated for 2-3 months before we finally decided to just come clean about it. This was in October (I think?) of 2012, and it still took me another 6 months to fully open my eyes.

Fast forward to May 2013, and there I am, completely awake for the first time in about 5 years and ready to make some changes. I wanted to get my life back, and if I’m completely honest, when I started writing this blog, part of the plan was to save my marriage. I wanted to feel better so I could have the strength and energy to fight for my husband. What I didn’t realize then was that he had already given up. I am glad that I didn’t know it at the time, because I might not have fought as hard as I did to get better.

The only downside is that because I am a fighter (and a stubborn one at that), it took me a long time to realize that I was fighting a losing battle. The harder I tried to pull us together, the worse it got. I am not going to go into any more detail about how things finally ended between us, the important part is that it did. I knew things were finished between us back in September, right around the time I turned 30.

You may be wondering why it has taken me nearly 7 months to get around to telling this story… In all honesty, I held back because it wasn’t entirely mine to tell. (For those of you who have been following me for awhile, you may remember me using that statement in previous posts, now you know what I meant. Easter egg!). I am telling it now for several reasons, 1) I have finally accepted the fact that it is over; 2) I fully expect the papers to be signed before the end of the summer and 3) I am utterly terrified by the new situation I find myself in.

There is no going back now, the only thing I can do is continue putting one foot in front of the other. This is new and completely uncharted territory for me, I can’t help but feel like a house cat that has suddenly been set loose outside. The only consolation I have is the knowledge that I am not alone. I have a circle of friends and family to keep me grounded and to help me face whatever challenges lie ahead.

I am afraid, but I am not giving up.

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Race Day, The Shamrock 8k

Shamrock results

On Saturday, March 15, 2014, at 9:15 am, I crossed the finish line for the Shamrock 8k, 2 minutes and 11 seconds under my goal time!! I’ll be honest, I have no idea how I actually managed it. The race started at 7:45 am, and I was only running on about 4 hours of sleep… I am amazed that I finished it at all, let alone under my goal time. I spent about the first 2 miles of the race cursing myself for being out there in the first place and wondering why on earth I ever thought this was a good idea. Seriously. Thankfully, around mile 2, I finally found my stride and was able to put my butt in gear. I may have been hating myself initially, but I am so glad that I was stubborn enough to push through to the finish.  Even after all of the training I put myself through, this was one tough run.

Would I do it again? Hell yes! As a matter of fact, I’m already considering my next venture into insanity: The Wicked 10k, where I’ll get to run down the boardwalk dressed as a giraffe. I’ve got until the end of October to create the perfect giraffe running outfit and get myself ready to actually run 6 miles… I’m not fully committed to this one yet, but the urge to do it gets stronger every time I say the phrase “running down the board walk dressed as a giraffe”, so chances are good that I’ll end up doing it. Hopefully, I’ll be running with the BFF for this one, but even if she doesn’t run with me, she’ll be dressed up in a matching giraffe costume, since it was mostly her idea… 🙂  Don’t worry, there will be pictures!

I know it sounds like I’m treating this lightly, but for me, running these races is no joke. It has been getting easier, but most days, every single step is still a fight, both mentally and physically. I’m not running because I feel good, I’m running in order to feel good. I know that as soon as I stop moving, the fibro wins, but there are some days where even that knowledge isn’t enough to keep me going; on those days, it’s the support of my loved ones that keeps me going.  Thank you guys for believing in me, even when I didn’t believe in myself. Extra special thanks to Aaron for getting up at 6am and dragging my whining carcass out of bed and down to the starting line, knowing you would be at the finish line is what kept me moving forward.

 

Shamrock finish

 

Fighting fibro with fire

This weekend, I will be running, (or attempting to, anyway), in my second race, the Shamrock 8k. My last race was a 5k, so this one will be a bit harder. I was so excited about this race up until a few weeks ago, when I came down with a rather nasty cold that lasted for 2 solid weeks. Prior to the cold, I was able to complete 8k in just under 55 minutes, which thrilled me because my original goal was to finish in under 60.

Unfortunately, that cold has set me back considerably. I did a practice run Saturday afternoon and I came in at 68 minutes, which was a struggle to achieve. Considering that I have three days left before the race, there’s just no way I’m going to be able to improve on that time.

Am I disappointed? Yes, I am extremely disappointed. Did I spend entirely too much time freaking out about my run time? Yeah, I did. However, while I was sitting around feeling sorry for myself, I realized that even if I don’t finish the race with the time I had hoped, at least I’ll finish it. A year ago, I couldn’t have even dreamed of walking 5 miles, let alone running a 5 mile race. Even if it takes me 90 minutes, it’s a massive improvement over where I was 12 months ago.

So, with that thought in mind, Saturday morning, I will be getting up bright and super early (for me at least), and I’m going to give this thing everything I’ve got. I don’t care about placing or prizes, I’m not doing this to impress anyone; I’m doing this for me, to remind myself that I am stronger than I think I am. For me, running this race is just one more way to fight fibro with fire.

For a friend

If there is one thing I have learned, it’s that to live is to fight. Each of us has their own private battle to fight and most of us silently carry on that fight every single day. The primary reason that I started writing this blog was to break that silence. I needed to get out of my own head; I honestly didn’t care if anyone else ever read my story, I just needed to get it out there.

I quickly discovered that my words were not just reaching other people, but were actually helping them as well. Through comments and e-mails, I have learned that I am not alone in my struggle and that by breaking my silence, I have inspired others to seek help or make changes in their own lives. Sometimes, simply knowing that you’re not alone in your fight makes it easier to bear.

On that note, there are a few more walls that I would like to begin breaking down. My hope is that sharing this part of my journey will help others see their own paths more clearly.

Since I started writing this blog, I’ve spent a lot of time talking about the effects exercise and weight loss have had on my battle with fibromyalgia. This blog was never meant to be about the weight loss itself, but about how losing the weight helped my condition. I have no intentions of changing that, however, a recent conversation with a very dear friend has made it obvious to me that I have left out some details that are important to my story.

I have been overweight my entire life. Throughout my childhood and adolescence, I was constantly teased and ridiculed about my weight. I hid my self consciousness behind a wall of books, which did nothing to help the problem. When I was diagnosed with poly cystic ovarian syndrome, at the age of 16, my doctor told me it was due to my being overweight and that it was possible I might be in the early stages of type 2 diabetes. In the course of an afternoon, my weight went from a minor inconvenience to a major issue.

My parents did everything they could to help me. My mother somehow managed to show her concern about my weight without ever once making me feel embarrassed about it, (which is a truly amazing feat when dealing with a teenager). We went to nutrition counseling, the whole family went to the gym together, we started riding bikes together… Nothing helped.

I ended up going to an endocrinologist who prescribed a variety of prescriptions to help control my insulin levels, but he seemed more concerned that I would develop “abnormal facial hair” than anything else. I guess his choices in drugs helped, as I never did develop the mustache he always asked about.

My weight stayed basically the same until I was diagnosed with fibromyalgia. What my rheumatologist failed to mention when he began prescribing medication to treat the fibro was that nearly every drug they used at the time had a side effect of weight gain. I gained about 60 pounds over the course of a year, putting me more than 100 pounds over what is considered a “healthy” weight for my frame. Suddenly my endocrinologist started using words like “morbidly obese” and prescribing actual weight loss drugs.

The weight loss drugs had very little impact on my weight. I was at a loss. I tried Weight Watchers, diet supplements, going to the gym and various other diet plans, all to no avail. To be honest, I just sort of gave up. By making changes in my eating habits, I was able to beat the insulin resistance and eventually my endocrinologist actually said “unless you’re interested in weight loss surgery, there’s nothing else I can do for you”.

I left the doctor’s office that day feeling angry and completely hopeless. I was already battling fibromyalgia and I felt like I was doing everything I could to lose weight. Looking back on it now, I can see that while I was trying to lose the weight, my heart just wasn’t in it. I was trying to lose weight because everyone was telling me I needed to, not because it was what I wanted. I’m not saying that I wanted to be fat, I didn’t, but I wasn’t ready to put forth the amount of effort required to do anything about it.

Skip ahead about a year or so, to 2007. I finally found a combination of medicines to help me manage the symptoms without putting on extra pounds. In fact, the new meds actually helped me drop around 35 pounds, but only because they literally killed my appetite. In truth, it got to the point that I had to be reminded to eat. There were several occasions where I nearly fainted from not eating, simply because I was never hungry. It took some time, but I did eventually get things ironed out so that I could manage my symptoms without inadvertently starving myself.

Through sheer luck, I managed to keep my weight stable over the next few years, even after the fibro forced me to stop working altogether. In early 2012, my husband and I decided we’d had enough of being overweight and went on a joint diet. If I’m completely honest, I only started the diet in an effort to support him; I had already resigned myself to being overweight and firmly believed that there was nothing I could do about it.

We changed our eating habits by monitoring portion sizes, choosing healthy alternatives to junk food and counting our calorie intake. We tried to become more active, but that was where I fell off the wagon. I didn’t realize it at the time, but I was also battling depression, which kept me from being the partner I should have been. Over the next 4 months or so, I lost a grand total of 15 pounds; not bad, considering I was in full blown slug mode. At this point, I hit one of those plateaus dreaded by all dieters, and I just didn’t have the energy to cross it. Thankfully, due to our diet changes, I was able to keep the weight off.

Fast forward to my very first blog post in May 2013: I finally found the drive I needed to pull myself out of slug mode.

I truly wish I could explain how it happened. All I can say is that something in my head shifted and suddenly I just knew that I could become a better me. I woke up one morning and simply decided that I was going to change things. I decided to lose weight in order to feel better, not because someone else told me I needed to or because I wanted to look good in a swim suit.

For me, that was the key. I needed to consciously decide that it was what *I* wanted. Once I did that, the determination, the will, to make it happen was just there. I didn’t have to struggle to get started, I just did it. Yes, some days are harder than others and some days I have to fight to keep going, but I know in my heart that I’m doing it for me, and that is what gives me the strength to carry on.

For those of you out there who are struggling to lose weight, take a second to think about why you’re doing it. Are you doing it to please someone else or is it what YOU want? The mind is a powerful thing, you’ll be amazed at what you can accomplish when you decide to do it.

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Rage is contagious

I’m not sure if it was from the cold weather, stress or some sort of cosmic retribution, but right after I posted “The Plan, update #8”, the pain set in. Oh the irony. I had literally just finished saying how my pain levels had gotten so much more manageable, blah, blah, blah and BAM! Next thing I know, it feels like a bunch of (evil) little gnomes are hitting the nerves in my left wrist with pickaxes. Seriously, that’s what it felt like. It wasn’t a flat line sort of pain, it was like someone plucking a guitar string over and over again, but with no discernible rhythm.

I went from feeling great to a pain level of about 9 with no warning whatsoever. In my case, there’s really not much that can be done when the pain hits that hard, that fast. If the pain sets in slowly, there’s a good chance that I can head it off by exercising; the endorphin kick from working out really does wonders. The problem is, for that to work, I need to have some kind of warning that the pain is coming, which rarely happens.

I can’t speak for anyone else, but for me, pain killers simply do not work. I have literally tried every type of pain relief available. Perhaps not every single drug/remedy, but at least one out of every branch; NSAIDS, opioids, corticosteroids, acetaminophen, muscle relaxants, anti-anxiety/depressants, and even anti-convulsants. I’ve tried physical therapies, massage therapy, chiropractic treatments… None of them help with the pain. The best result that I can ever get from a pain reliever is that it makes me too stupid to care about the pain. The pain doesn’t go away, and it doesn’t ease up, but the drugs cloud my head so that the pain just doesn’t seem important anymore. Needless to say, it’s very difficult to function like that. For this reason, pain killers are always my absolute last resort.

It’s never a question of whether I’ll make it through a flare up or not; the question is will I make it through without having some sort of nervous meltdown. Most of the time, it’s easier to just suffer through the pain; at least I can still change the TV channel if I want to or get myself a bowl of cereal. I HATE the way the drugs make me feel. Not only do they make me completely useless, they usually have the side effect of making me feel depressed. Sometimes though, the only choice I have is to let go; it’s either my independence or my sanity. The drugs will eventually wear off… If I lose my mind, I won’t be independent anymore anyway.

Monday was one of those days. It started at around 3am. I had been having a nightmare that someone was basically flaying the skin off my left arm; it was not pretty. When I finally managed to escape back to consciousness, the pain was so intense that for a second, I questioned whether it was a nightmare or not. Once my head cleared, I was so nauseous from the pain that I was afraid to move for fear I’d be sick. I knew there was no way I was making it through the rest of the night on my own; I just took the pills. I managed to fall back asleep, but it was far from restful and since the drugs only last for a few hours, I was wrenched awake again around 7am. Once again, I didn’t even try to fight it, I just reached for the bottle of stupidity.

By 9am, I was completely befuddled from the drugs and lack of sleep. When asked how I slept, my response was something along the lines of “like shit, but I think I’m high…”. (Sorry, love, I’m sure that’s not what you wanted to hear first thing in the morning…) Needless to say, it was not the best start to a Monday, or any day, for that matter.

My day didn’t get much better from there. I managed to make it through the rest of the morning without taking anymore pills, but it was mostly through sheer stubbornness: there were things that I needed to deal with and I had to be clear-headed to do so. By about 3pm, I knew I wasn’t making it any further on my own. I was exhausted and the pain was making me addle-brained anyway, so I went for the meds, the couch and The Lion King.

Of course, by this point, I was also angry. Normally, I take that anger and pound it out on the pavement, but when you’re so doped up that you can’t even follow a Disney movie, physical activity is out of the question. I ranted and raved in my own head for a while, but eventually, the drugs took the anger away as well, only to replace it with a sort of hopeless apathy. One of my last clear thoughts was that even though I use my rage to fuel the changes I’ve made in my life, the anger is one of the worst parts about having a chronic illness. The illness itself may not be contagious, but the feeling of being powerless is.

It’s easy to forget that you, as the sick person, aren’t the only one dealing with the illness. The people who care about you suffer too. In fact, I would even go so far as to say theirs is the harder role. I know that I would rather suffer myself than watch someone I love have to go through it.

When you’re dealing with something that’s incurable and difficult to treat, *everyone* feels powerless. I’m no expert, but it seems to me that unless a person can find a way to deal with it, eventually that feeling of being powerless turns to anger. They’re not angry at the sick person, they’re angry at the situation, but how do you handle that? You can’t go around trying to hide your illness, it only makes matters worse; but when you tell your loved ones about it, it only seems to stress them out…

It’s damn near impossible to talk about, since no one ever wants to tell the sick person that their illness is fueling their anger, in fact, from my own experience, most people seem to feel guilty admitting that fact even to themselves. Instead, they find other things to be angry about, which only adds more fuel to the fire. Sooner or later, the rage jumps from one person to the next and you end up with a houseful of pissed off people, but no one can explain why.

I understand that it’s not “my fault” that people are upset by the situation, but I still feel guilty about it. If I weren’t sick, they wouldn’t have to worry about me, which would take at least some small portion of stress out of their life. It’s a vicious circle: watching you suffer causes them to suffer, which causes you to feel even worse… How do you break that cycle? Is it even possible? I don’t know the answers to these questions, but I am going to try to find them.

To be continued…

I hate clowns.

You would think that after dealing with something for nearly 13 years, you would be completely familiar with it. For instance, Fibromyalgia has been a part of my life for, you guessed it, nearly 13 years. Yet, just today, I discovered a new, or at least new to me, symptom: Raynaud’s Phenomenon. I have never been a fan of the cold, in my world, cold = pain. However, today, things got so much worse.

We had a huge snowstorm here last night, which left something like a foot of snow outside. Even with my aversion to the cold, I can’t resist that kind of potential for fun, so I got bundled up, (literally, two or three of everything), and went out. Within about 5 minutes, the tips of my fingers started to tingle. I wondered about it, but ignored it, figuring my body would eventually adapt. Finally, after about 20 or so minutes outside, I couldn’t take it anymore. By the time I got inside, the pain in my fingers was so bad I had tears in my eyes; on a scale of 1 to 10, this was a 12. Thinking I had somehow managed to get some sort of mild frost bite, I de-gloved and noticed that my finger tips were white, with a hint of blue at the base of my nails. Ok, no need to freak out… Let’s just try to get warmed up. I ran cool water over my fingers. It felt HOT. Like, scalding, except that when it hit my palms, I could tell that it was, in fact nearly ice-cold. It took a while, but I was eventually able to (SLOWLY) turn up the temperature of the water enough to get my finger tips back to something resembling normal.

That was nearly three and a half hours ago, and my finger tips are still pale and tingly. Not quite numb, but definitely tingly. *Side Note: I know that Google is not necessarily the best place to go looking for answers, but #1, I am, for all intents and purposes, (except serious emergencies), snowed in and #2, I have previously come across several articles on Raynaud’s Phenomenon and it’s relationship to Fibromyalgia.* So, I did some research online and found that not only is Raynaud’s very common in people with Fibromyalgia, Lupus, and other related diseases, it can be “unmasked” as a symptom by weight loss… Suddenly the pieces fit.

I’ve been “whining” for months that my weight loss has made my cold tolerance even lower than it was to begin with. During that time, I have noticed my fingers, toes and lips turning blue after being out in cooler weather, (basically anything below 60 degrees). I blamed it on the weight loss and continued on my merry little way. Upon closer inspection, it would seem that my inability to tolerate the cold was quite possibly part of Raynaud’s Phenomenon peeking through the veil of other symptoms. My weight loss, which is at a total of 80 pounds since 2006, has simply moved the curtain aside and allowed Raynaud’s to poke it’s ugly little head out.

Seriously, why is that every time I feel like I’ve got a handle on things, something else has to pop up? I know that things could be so much worse and I know that there are many, many other people out there who have been dealt an even more wretched hand than mine. I just find the whole thing so disheartening sometimes. It’s really hard to stay positive and upbeat when you feel like there are evil clowns waiting to jump out at you at every turn.

Ok. I am done whining about it. In all reality, this doesn’t change anything. The only thing that has changed is that I now know the name of another symptom. As appealing as hiding in a dark, (warm!), corner might sound, it’s not going to happen. I am going to focus instead on all of the wonderful, amazing and totally awesome things I have in my life, like: love, friendship, shoes and chinchillas.

“Just keep swimming”.  

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