“16 Things People With Chronic Pain Wanna Tell You”

Thank you to Dianna Labrien for writing this article on LifeHack.org!! I have simply reposted Dianna’s entire article, but the original article can be found here

  
It’s not just in our head. The pain is there and always would be even if there is no apparent reason for it. Our pain is real and will not just go away after we take some pills for a week or two. It would always be there and we have learned to live with it. Here are 16 more things we wish you knew about us!

1. We Don’t Make a Mountain out a of Molehill

You think you can imagine our pain? Now multiply that amount by 10. No matter how sympathetic you are, studies have proved that people tend to underestimate other people’s pain. Chronic pain by default is hard to imagine unless you have experienced it in your life. It’s invisible, but it is always there. We urge health care not out of hypochondria or the need for attention, but because of our severe physical state.

2. We Need to Balance Actions Carefully

We use the Spoon Theory: We have a limited amount of spoons each day we could use for different actions. Getting up, getting dressed, taking a shower, driving, walking, picking up the phone — each action requires us to use one of our precious spoons. On good days, we finish with a few spoons left, so we can do something fun. On bad days, we borrow spoons from the next day and need extra recovery afterwards. So if we suddenly cancel our plans with you or tell we can’t do it now — it’s just because we ran out of spoons today. Try to understand this.
3. We Struggle to Find a Good Doctor

Sadly, a lot of health care pros lack knowledge in pain management because it is rarely part of their training. We often visit numerous specialists before receiving a proper diagnosis and wait months to years to see a real pain specialist for treatment. Doctors often fall victim to the cognitive error of underestimating another’s pain and a small number of doctors are willing to take the legal risks involved in prescribing powerful pain pills.

Same goes with the nurses. Finding a good one who can really understand and help us relieve the pain is hard! Luckily, there are some online schools like Sacred Heart University that are training future nurse leaders to overcome these issues in the future and provide better care for patients.
While you may think it’s crazy, we’re willing to travel further to find a good nurse with this kind of training and rave about it when we find one.

4. We Are Not Lazy

Remember the limited amount of spoons we have? Now add the fact that it takes twice as much effort for us to complete even simple things. We try harder than other folks, yet we still manage to accomplish less.
5. We Try to Look Our Best
“But you don’t look sick” is one of the most common phrases you hear if you have invisible disease. Well yes, we try to look our best even on bad days when our body explodes from pain. We dress up carefully to cover up our bruises or swelling, take painkillers at the optimal time, and rest before going out. We would love to pass as normal as much as possible! Even if we feel pain, we would keep it to ourselves until the moment we step into our apartment and just collapse.
6. We Don’t Ignore You

Sometimes our pain occupies too much space in our brains and we simply cannot focus on anything else. Pain can be very distracting and mentally draining, so please forgive us when we can’t give all the attention to you.

7. We Know Our Illness Won’t Go Away

It’s always there. We can’t escape. And yes, we have researched all the possible options. If there was a cure, we would know about it!

8. We Are Not Drug Seekers

Sadly, we need to explain that both to the doctors and folks around. We don’t want drugs. We want anything to make the pain go away even for a little while. So yes, sometimes our treatment requires taking opioids or medical marijuana. We treat those just like any other remedy. And no, we are not particularly fond of the side effects either.
In fact, as the Cleveland Clinic explains: Addiction appears to be distinctly uncommon in patients without a prior history of addiction. Addiction is a psychological phenomenon that isn’t caused by chemical components of the drugs and typically requires a setting different from the one we have. We take our drugs under supervision and come back home to the loving family unlike the street-users.
9. We Don’t Always Know How to Manage Our Pain
Just because we have been dealing with it for ages doesn’t mean we always know how to tame it. Sometimes, we have very bad days when no previous routines help. We just close our eyes and wish those would pass faster.
10. We Get Super Active on Good Days

Physically feeling good is just about the most exciting feeling we can have! We can do our chores normally, go on a day trip, meet with a bunch of people at a time, and even think of running a marathon. On a good day we are super active and excited with everything, trying to get as much done as possible!
11. We Don’t Want You to Stop Inviting Us Out
No matter how many times we have said “no” we still want to be part of the gang and go out when we really can do it.
12. We Don’t Have a Job for a Reason
Again, we are not lazy. It’s just that we often lack spoons to work on the top of our other activities and daily chores. Besides, most employees refuse to take staff for a few hours per week and tolerate the fact that we can leave at the middle of the day if our pain gets unbearable.

On the bright side though, thanks to technology we can work from home in our own pace, doing various jobs online, selling stuff on eBay or Etsy, learn everything we need from self-help and nursing to design or coding online. If we don’t have a regular job, it doesn’t mean we can accomplish nothing in life. Multiple sclerosis did not stop Vanessa Heywood from creating an award-winning music company!

13. We Don’t Want Sympathy, We Want Acceptance
Instead of making that “I’m so sorry for you” sad face, treat us like equals. It’s not that you should completely ignore our condition, but show us you are ok with it and ready to make small adjustments for us.
14. We Don’t Want Your Medical Advice
Believe me, we have heard enough already and feel frustrated, as they don’t work. Thanks for the thought, but let’s just talk of something else. My disease does not define me. I know a lot of other interesting things, I would love to discuss with you instead.
15. We Need to Know You Are Here for Us
No matter how self-sufficient and independent we try to appear, sometimes we just need you to be here with us and hold our hand on a bad day.
16. We Appreciate You and Everything You Do for Us
You should never forget that. We are eternally grateful for supporting us and making us feel loved!

Featured photo credit: carianoff via flickr.com

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Allow me to (re)introduce myself

It has been two years since I first decided to turn my life around and start writing about my journey. Looking back now, I can honestly, (and proudly), say that I am not the same person that I was two years ago. Since fighting fibromyalgia is an ongoing battle and I intend to keep chronicling my fight, I thought it would be appropriate to reintroduce myself to those of you who have wandered into my little corner of the web. 

My name is Christina and the most important thing you should know about me is that I am happy. I don’t just mean with my life or the people in it, I am happy with myself. For the last two years, I have been actively creating my own happiness, by seeking out the things that make me feel good and eliminating those that don’t. For me, happiness isn’t in my bank account or my jeans size, it’s in what I do each day. 
I am a runner. I am neither the fastest nor the slowest and I don’t run for miles at a time, but I run by choice. More importantly, I love it. Running has taught me how to listen to my body, I know when to slow down and I know when I can speed up. I have learned that having a bad run every now and then is a good thing; it allows me to truly appreciate the great runs. When things get stressful, I lace up my sneakers and I just go. Instead of punishing myself by wallowing in stress, I punish the pavement beneath my feet and I am free, even if it’s only for a few minutes. 
I am an artist, with a creative streak that refuses to be denied. I paint, draw, crochet and in case of emergency, (or boredom), sing weird little songs about my cats and house plants. 
I am also a teacher, although I don’t have a herd of students or a classroom to call my own. Instead, I have the privilege of working with two wonderful children for a few days a week in their home. I suppose that some might call me a “babysitter” or a “nanny”, but when was the last time you met a babysitter that enjoyed finger-painting or understood what a “teachable moment” was? Several year ago, I had given up on being able to ever put my passion and experience to good use, but I discovered my own path that allows me to continue teaching and interacting with children without putting my sanity at risk. 
Don’t get me wrong, I’m not saying that my life is all puppy dogs and cupcakes, (actually, there aren’t nearly enough cupcakes, for my tastes). I still have bad, (and really bad), days and I still get grumpy. I am still completely capable of being a hot tempered bitch, the difference is that I have learned how to manage it a bit better. Exercise gives me a proper outlet for both the pain and the rage. It also helps me fight the crippling depression that often follows a flare up and it allows me to clear my head, which is very useful for stressful situations. 
On the bad days, I have to fight against myself to keep moving, but if I have learned anything over the last few years, it’s that the clouds always pass. 

No excuses.

It’s raining.

It’s cold.

With the wind, it’s cold enough to make my muscles feel like there are shards of glass layered between them. I’m hurting, about an 8/10.

I got maybe 5 hours of sleep last night.

I spent 5 hours babysitting a two year old and 3 month old infant, so it wasn’t a laze around kind of day.

This is what was going through my head yesterday afternoon. I was exhausted and all I wanted to do was go home and sleep. Any one of these excuses could have been reason enough to skip my workout; and yet… I finished babysitting for the day, I got in my car and drove to the park.

Before I even finished my warm up, I was soaked through, I was still close enough to the car that I could have easily given up an just gone home. I didn’t. I turned up my music and I ran. I did 4 miles all by my lonesome in the cold rain. By the time I was done, my fingers and toes were burning, (thanks to the Reynaud’s Phenomenon I developed last year).

It was worth it.

I’m not looking for a pat on the back, I can do that myself. I’m sharing this experience because I’m sick of excuses. Mostly, I’m sick of my own excuses, but I’m also tired of listening to people whine, (via every social network that exists), about how miserable they are. Would you like to know why you are so miserable? Because you allow yourself to be.

I’ve been doing my own fair share of moaning and groaning, (mostly to myself), about how I’ve plateaued and can’t seem to shake these last 20 pounds. I whine that I just can’t run like I could this time last year, I fuss about the fact that my size 6 jeans don’t fit the way I want them to. Then, it occurred to me: the only thing keeping me out of those jeans is, (cue mental face palm), myself.

No one is keeping me tied to a chair, no one is forcing me to eat cakes or cookies, I’m doing it to myself.

I realize that this whole thing probably sounds harsh, but I’ve never been a very cuddly kind of person. I don’t sugar coat things and I don’t do fluff. If anything, my journey to beat the fibro has made me even harsher. I have no tolerance for people who claim they want something and then do nothing about it, myself included.

I understand now why personal trainers and fitness experts tend to seem like bullies; they know that people are their own worst enemies. About 10 years ago, I took a kick boxing course in college. The teacher was a serious ball buster and her motto was: “why be slack?”. I hated her. She was loud, harsh and allowed no room for half measures. Suddenly, I understand. If you truly want to achieve something, there is no room for half hearted attempts. You may not succeed on your first try, but if you don’t put 100% into every attempt, you’ll never reach your goals.

Yes, that is easier said than done. I may understand it, but I am still learning to put this concept into action. The cold burning sensation I’m still feeling in my fingers tells me that for today at least, I have succeeded. That leaves me with just one question: what’s your excuse?

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Here’s to the hidden paths

One of the ways I combat the pain from fibro is through art. I don’t react well to pain medications, so I do what I can to get through the bad days, which sometimes includes losing myself in my art. I’ve never really considered myself as an “artist”, I think I’m more of a “creative gypsy” (yes, I made that term up), since I tend to wander from medium to medium. Pastels, water colors, crochet, cross stitch… I’ve tried my hand at a wide variety of hobbies in my quest for creative expression.

Lately, I’ve been painting, which is something I haven’t done in nearly two years. This isn’t unusual for me; I’ve been known to go a year or even several before picking a hobby up again. This time, though, it’s different; I didn’t pick my brush up in order to escape the pain. I picked it up because a two year old boy asked me to.

I guess I need to fill in some back story here. In order to keep myself from becoming a grumpy old troll again, I babysit, when I can. I’ve been watching this little fella for about a year now; I’ve seen him grow from a toddling baby into a rough and tumble little boy, and I have loved every minute of it. He’s at that funny age where children latch on to something and obsess over it. They want to watch the same movie, hear the same song or read the same book over and over and over again, until you think your head will explode if you have to endure it one more time…

Well, D’s obsession happens to be construction equipment. This kid can, at two years old, name more heavy machinery than anyone I’ve ever known. As a matter of fact, he often talks about machines that I’ve never even heard of.

We often color or draw together when I watch him and he always asks me to draw things for him, a doggy, a kitty… Usually it’s just simple stuff, which is great, because I really can’t draw, (there’s a reason all of my art up to this point has been abstract). So, anyway, not long ago, D suddenly asks me to draw an excavator. My mind went totally blank. Eventually, I managed to draw a box with wheels and an arm with a scoop on the end of it, D approved and the mission was accomplished.

Not long after, D’s mom told me that because D loved that (hideous) little drawing so much, she wanted to put it on canvas or something to hang in his room. It was at this point that I decided I needed to at least try to come up with something better; I really didn’t want my name attached to that awful doodle. So, I set out to draw the best darn construction equipment that I possibly could.

That, ladies and gentleman, is how my very first commissioned art work ended up consisting of a bulldozer, an excavator and a dump truck. It’s certainly not the kind of work I dreamed I would sell, but if I’m honest, I never expected anyone to ever want to pay me for my scribbles.

As it turns out, I can draw! Who knew? I’ll never be asked to do sketches for an anatomy text book or anything, but I bet I could illustrate a children’s book. How cool would that be?

I realize that on the surface, this post has basically nothing to do with fibromyalgia or dealing with a chronic illness. I shared it because I wanted to share what I’ve learned. I know I’m always talking about fighting on and not giving up, but this experience showed me that I had, in fact, given up on some things: my dreams. I’ve been so focused on getting healthy and beating this disease that I couldn’t see anything around those goals. If anyone ever asked me what I would after I achieve these goal, I wouldn’t know what to say. I’m not saying that those aren’t good goals, they’re still at the tippy top of my priority list, but I’ve come to see that I can be more.

A two year old child took me by the hand and showed me a path for my life that I hadn’t even seen. He has made me realize that there is always more to learn and that just because our original dreams are no longer possible, we should never stop searching for more.

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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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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.

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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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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