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.

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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

 

The Plan, update #8

Here’s a random, completely unnecessary fact about me: I LOVE making playlists. Seriously, I can amuse myself for hours putting together a playlist for something. That being said, it should come as no surprise that I have at least 5 different workout themed playlists. It’s quite possible that making new running playlists is my favorite part about running. 🙂 I decided today that it was time to make a new playlist, geared towards running a nine minute mile. There’s an awesome website, www.jog.fm, that creates playlists based on your desired pace, which for me has made finding new music amazingly easy. New or at least fresh music is incredibly important for me, since it’s one of the ways I amuse myself while doing something that I have no natural desire to do.

While looking over the list of suggested songs, I came across several songs that aren’t actually “new”, they’re just new to me. My favorite so far is “Not Afraid” by Eminem. I know that a lot of people find his music offensive, but I love it. I can’t say that I love everything he’s ever written, but I do like most of his stuff, and “Not Afraid” is definitely at the top of that list. Why? Because the song rings true for me, here’s one of my favorite parts:

“And I just can’t keep living this way
So starting today, I’m breaking out of this cage
I’m standing up, I’ma face my demons
I’m manning up, I’ma hold my ground
I’ve had enough, now I’m so fed up
Time to put my life back together right now!”

Admittedly, the song is a bit fast for a 9 minute mile, but it gets my head in the right place, so I’m willing to over look that little fact.

Another song that made it in to my new playlist is “Remember the Name” by Fort Minor feat. Styles of Beyond. Like “Not Afraid”, this song is technically too fast, but it helps me focus and again, I can relate to it:

“This is ten percent luck, twenty percent skill
Fifteen percent concentrated power of will
Five percent pleasure, fifty percent pain
And a hundred percent reason to remember the name!”

If I were to use these lyrics to describe my own journey, it would read more like this:

This is five percent luck, five percent skill
Thirty-five percent concentrated power of will
Five percent pleasure, fifty percent pain

The lyrics don’t flow quite as well that way, but that’s ok, it’s not like I have any aspirations to be a song writer; I’m just an ordinary person, trying the best I can to describe the way I see things. For all the doubters out there, this song, (“Remember the Name”), is a reminder that yes, there is pain involved in this endeavor of mine, but the results are worth it. I am not ignoring the pain factor, nor am I suggesting that anyone who has a similar condition ignore theirs; you have to be able to look at the pain and ask yourself this question: “Is this a pain I can work through, or do I need to slow things down?”

When the answer is “yes, I can work through/around this pain”, that’s where the “thirty-five percent concentrated power of will” part comes in. I’ll be the first to admit that I don’t exactly LIKE exercising, (“five percent pleasure”), but I have learned that it is necessary. If I want to have something that even resembles a “normal” life, I am going to have to work for it, which in this case means working out, or at the very least staying active. I will not be a prisoner to my pain, even if it means getting up and doing things I am not particularly fond of. Of course, it also means paying close attention to what my body is trying to tell me.

Even when someone is as intimately familiar with pain as those of us who deal with it on a daily basis, it can be damn near impossible to tell the difference between “serious, something is wrong pain” and “normal, fibro pain”. Do I get it wrong sometimes? Yep. Being as stubborn as I am, I usually tend to push through when I really should take a break; more often than not, it takes someone else pointing out that I need to rest to get me to actually do it.  No, I am not exaggerating, I am actually that hard-headed. Thankfully, I have someone in my life who loves me enough to say “hey, dummy, you need to take a break”.

I truly wish that I could sit here and say that all the hard work has totally paid off and that I am completely pain-free. I can’t.

Before I started “THE Plan”, I spent EVERY SINGLE DAY in near constant pain, often rating 8 or higher on a scale of 10. Some days, I dealt with an incessant “hum” of pain at about a level of 5 or so, with crippling spikes of 8 to 10. Every day was a “bad” day and I nearly lost myself in the misery. Then, one day, I woke up. I realized that no one was going to “fix” me and that if *I* didn’t do something, I was going to end up wasting my entire life.

There is no cure or even any definite treatment for fibromyalgia. There isn’t even a common consensus on what causes it. From the looks of things, it will be a very long time before researchers even begin to understand the disease. The only thing that anyone seemed to agree on was that regular exercise seems to help with the symptoms. I took that idea to heart and thus, “THE” Plan was born.

It’s been eight months, 35 pounds, and over 1000 miles.  I am exercising a minimum of 4, usually 5 days a week, for at least 30 minutes a day.

I am not pain free, but now the “good days” out number the “bad” days by about 5 to 1. I am no longer in constant pain and while I still experience some kind of pain on a daily basis, my average pain level is 5 or under, with occasional spikes of 8 to 10. Fatigue, insomnia and “fibro fog” are all still major problems, but most of those symptoms can be at least partially managed by medication. I am well aware that I am not “cured” and I know that as soon as I stop working at it, things will go right back to the way they were before. Nothing that is worth having comes without a fight and since as far as anyone knows, you only get one life, I’d say that’s definitely worth fighting for.

“I’m not afraid
To take a stand
Everybody
Come take my hand
We’ll walk this road together, through the storm
Whatever weather, cold or warm
Just letting you know that you’re not alone
Follow if you feel like you’ve been down the same road”

— Eminem, “Not Afraid”

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”.  

100

 

Happy New Year!

I can’t even begin to tell you how thrilled I am to be able to say “Happy New Year” and actually mean it. That’s not to say that I wasn’t happy last New Year, but it’s not the same kind of feeling. Last New Year, I was surface happy; the kind of bliss that comes from pretending your problems don’t exist. This year, however, it’s more of an all-encompassing kind of bliss. 2013 was, for me at any rate, a total train wreck; especially the first half of the year. I did manage to pull myself together there near the end and I am able to start 2014 with a clear mind and a light heart.

I’m not saying that all of my problems have been magically solved, (I wish!), but instead of ignoring them, I have faced them head on and found that they’re not nearly as bad as I had originally believed. It’s like those monsters you used to see in the dark as a child; once you turned the light on, you could see that instead of a snarling, child-eater, it was simply a jumble of toys/clothes and that all you had to do to defeat the “monster” was clean up your room. Not a pleasant task, but certainly much less hazardous than having to actually fight off a creature with sharp fangs and tentacles!

This time last year, I felt sure that my world was ending and that my life was going to be utterly ruined. While it’s true my world as I knew it did in fact, end, my life is far from ruined. I found the main source of the negativity in my life, which as it turns out, was myself, and I then I found the strength to make the changes I needed to make. Once that ball was rolling, I was able to cut out the people in my life who were fueling my negative outlook. My friends list may be a bit shorter, but at least I can say that it only contains people who love and respect me for being exactly who I am.

Happy New Year, everyone! I hope you make your 2014 a great one!

Laughter is awesome!

Here’s a question: aside from being pictures of cats, what do these two photos have in common?

20130820-214512.jpg20130820-214615.jpg

The answer: they make me laugh like a lunatic. Hopefully, most of you reading this find them at least mildly amusing as well, if not, well, I can’t help you. 🙂

These pictures are part of a photo album on my phone that I call my “laugh arsenal”. I’m trying to start a new habit. The idea is that whenever I start feeling down or just bad in general, I pull up my funnies and get in a good laugh. We’ve all heard the saying, “laughter is the best medicine”, and I’m finding it to be totally true. In fact, I’m even forcing this new habit on my bestie; if one of us is having a “sad moment” or just feeling down, the other texts over something hilarious. It’s amazing how much better you feel after a good laugh, and laughing burns calories! Hello, weight loss plan!

The best part about including someone else in the fun is picturing their reaction to whatever bizarre image you’ve sent them, assuming they aren’t sitting right next to, of course. I find that imaging my friend’s face when she next picks up her phone, (especially if it’s first thing in the morning…), often makes me laugh harder than whatever I sent her in the first place. Admittedly, I do have an odd sense of humor, so she does get a lot of very strange pictures… It’s amazing what you can find on the internet when you google “funny pictures”.

The only major problem I’ve encountered with this little idea is that sitting in a room by yourself and laughing aloud for no apparent reason can make people question your sanity. That’s ok, I just show them this:

20130820-221307.jpg

Viola! No more questions… Just kidding! Although, I’m betting that if I really needed a laugh, that would be a great way to get one! I’ll have to tuck that idea away for later. Maybe I can use it the next time I’m sitting in a doctor’s waiting room… 🙂

Earl Grey, hot.

Yep, that’s a Star Trek reference and no, I’m not a Trekkie. It just happens that my parents watched a lot of Star Trek when I was a child and it seems to have affected my brain. As a kid, I’d always wondered what “Earl Grey, hot” actually was. A strange thing to fixate on, I know, but my parents mostly drank coffee. Growing up in the South, the only kind of tea I was familiar with was “sweet tea”, so I was curious about the drink Captain Picard was so very fond of. Once I actually tasted it, I was hooked; I’ve been exploring teas ever since.

My tea cabinet, no kidding.

My tea cabinet, no kidding.

Why am I telling you all of this? Simple: because I loved tea before anyone called it a “super food”. I am not one of those people who will go out and buy something just because it’s suddenly become popular and in reality, calling something a “super food” is probably the most effective way to make sure I’ll never try it. I know that tea (especially green tea) has been getting a lot of attention lately for its many seemingly miraculous qualities. “According to research”, it can help prevent cancer and other diseases, lift your mood, help with weight loss, and even make you immune to the Zombie Virus. Ok, I may have made up that last one, but the rest are said to be true.

However, I’m not here to report on what everyone else is saying. I’m only telling you what I have personally found, and in my experience, drinking a hot cup of tea is a great (and tasty!) way to alleviate some of symptoms of fibromyalgia.

I did not scour the web for information on which teas to drink and then try them. I simply enjoy drinking tea and love to try different varieties, purely for the pleasure of it. It just so happens that while exploring the many different possibilities, I discovered that there are real, tangible benefits to some of them. I truly wish that I could tell you I’ve found a miracle tea that makes all of the pain and random symptoms of fibro go away, but if it’s out there, I haven’t found it. What I have found is that certain teas seem to make some of the symptoms more bearable.

One of my favorite “go to” teas is the Sleepytime blend by Celestial Seasonings. Seriously, this stuff does wonders for me; it’s the only thing besides toilet paper that I make sure to never run out of. I buy another box when I get down to the last four tea bags in the old box. If the zombie apocalypse happens, this is what I’ll be hoarding.

Anyway…

It’s a caffeine free blend of chamomile and spearmint with a hint of lemongrass, which makes it great for anytime of day (or night).  I find it to be incredibly soothing, just inhaling the aroma while it brews knocks my stress level down a notch. Since stress and anxiety have an immense impact on my pain level, anything that helps me keep calm is wonderful. This tea is also perfect for bouts of insomnia; chamomile has been used for centuries to “soothe the nerves” and help people sleep. You can buy plain chamomile tea, I’m sure it would be just as effective, I just don’t care for the flavor.

I absolutely adore a good cup of Earl Grey but, it’s really just “regular” (black) tea infused with bergamot and sometimes other flavors. I’ve tried many different flavors/varieties of black tea over the years and while I haven’t found it to be particularly useful for fibro symptoms, it does help with headaches. Add a bit of sugar (real sugar or honey, no fake stuff!!), to a hot cup of black tea (not decaf) and suddenly you have a drug free headache buster. It even helps with migraines, although I’ve never had a cup of tea make a migraine completely disappear.

There is a ton of research out there concerning green tea, but since I haven’t really consumed enough of it to notice any benefits, I’m not going to make any claims about it. What I can tell you is that if brewed correctly, it’s very good and it does have a lower caffeine content than black tea. I am, however, planning to try a few different varieties of green tea very soon, so if I notice anything amazing, I’ll definitely report back.

In the mean time, I think I’ll go check on my Sleepytime stash. 🙂

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