Courage

courage

I woke up this morning feeling like I spent the night in the dryer with a sack of oranges; I’m honestly amazed that I’m not covered in bruises, it feels like I should be. I’m sore all over, and I feel like I’m hung-over. Not cool, considering I rarely drink, and I certainly didn’t drink anything other than water last night. I’m definitely missing a few of my spoons today.

After being so active (for me, at least) these last few weeks, it’s actually very hard for me to sit here and basically do nothing. I know, I should be wildly grateful that I’ve been able to do the things I have- don’t get me wrong, I am. It’s just difficult to remind myself that these days are going to happen and I have to let them. My natural response is to fight back, but I know that if I do, I’ll be missing even more spoons tomorrow.

So, I’m going to take a deep breath, (or ten), sit back, relax and spend some quality time with my Xbox. Is that what I want to do? No. I want to be out and about, doing my workout and generally feeling productive. Don’t we all? Oh well. For today at least, I’ll have to channel all of that fiery, red-headed rage into defeating the dragons and giants of Skyrim.

I will try again tomorrow.

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THE Plan, Update #1

It’s time for an update on THE plan!

Let me start by saying that I am thus far, totally thrilled with the results! If I seem like I’m bouncing off the walls, its because I am. 😀
It’s been about four weeks since I started this little experiment of mine and I truly couldn’t be happier. I’ve lost 10 pounds so far, as well as, (drum roll please!), one jeans size!! Holy crap, Batman!

I’ve successfully managed to exercise at least four times a week, even with my previously injured knee, although that has been something of a struggle for me. Overall, my mood has been much better, but I still have at least one or two days a week where I feel totally overwhelmed and/or depressed. It takes a major amount of effort, but so far, I have been able to stop myself from giving into those moods, most of the time. Quite honestly, while the weight loss is amazing, it’s knowledge that I don’t have to feel miserable that’s really making the difference for me.

I know I’ve said it before, and I’ll probably say many more times in the future, but if the only variable in this situation that I can change is me, by God, I’m going to change it. I WILL NOT allow myself to become surrounded by hopelessness and misery ever again.

So, now that I’ve gotten my little affirmation out-of-the-way, here are some of the things I’ve noticed since I started this experiment.

My pain levels have dramatically decreased. I’ve had fewer instances of debilitating pain. I’m still in pain, but rather than being at 9-10, it’s been a more manageable 6-7. I have actually had at least one, if not two days over the last few weeks that have been completely pain-free. It’s kind of strange, I’m going through my day, doing whatever it is I’m doing, and I suddenly stop, because I have that feeling like I’ve forgotten something major. Anyone who’s ever suffered from fibro fog knows that feeling; it usually means you’ve forgotten to feed the cat, to pay the electric bill or worst case scenario, you forgot to put pants on before going out to get the mail. After a few confused moments of trying to figure it out, I realized that I wasn’t in pain. I’m so used to the “background noise” of my own pain that it actually startled me when it wasn’t there. It was like someone handed me a whole box of brand new spoons, (If you haven’t read The Spoon Theory, you totally should)!

Unfortunately, as with everything in life, there is a bit of a downside. While my pain levels have decreased, for some reason, the fibro fog has gotten worse. My best guess is that because I’m being more physically active and draining what little energy I usually have, my brain is being forced to conserve energy and is making cut backs. I’m forgetting even more words than usual, losing my train of thought in mid sentence, and stuttering and stumbling over words when I speak. My attention span has also gotten shorter (it’s taken me two days to write this post). It’s really very annoying.
I’m used to having these things happen on a regular basis, much like I’m used to dealing with a certain level of pain at all times, but the increased frequency is just downright embarrassing. Especially when in the space of a 5 minute conversation, I have to say “you know, that thing that does the…” 10 different times.

Overall though, I couldn’t be happier. If the fog issues continue to be a problem, I might see if a medication adjustment might help. Hopefully, it won’t come to that, I hate changing my meds around; I hate having to get used to new side effects. For now, though, I’m going to focus on the amazing results that I’ve achieved, and put the worrying aside for another day.

Until next time!

I Won’t Give Up

Never give up

My last post was something of a downer, so I wanted to share this lovely quote to try and counteract any sadness. Many, many thanks to my amazing bestie, Heather for passing this along to me! This quote goes right in line with my new outlook, as well as my new favorite song: “I Won’t Give Up”, by Jason Mraz. The song itself isn’t particularly upbeat or anything, and it’s really more about relationships, but it’s the message about not giving up that appeals to me. I won’t give up. Enough said. 🙂

Getting Past the Grief

As promised, I started seeing a therapist last week. Not my most favorite thing in the world, but it wasn’t as bad as I was expecting it to be. The first visit was mostly just an assessment, to see if she thought she could help and to make sure I could stomach being there. I told her all the basics, family background, medical history, I’m sure you get the idea. At the end of the visit, she told me that yes, she feels she can help me (yay!), and she also took some time to explain her theory on fibromyalgia patients.

In her experience, patients who suffer from fibro (or other chronic illnesses), are in a cycle of continuous grief. In a nutshell, we’re all grieving the things that have been taken from us by our illness; every day is a reminder of what we can no longer do, and the grief continues on. This is where she got my attention. I’d never thought of it that way before. I always just assumed I was in some kind of depression, brought on by the fibro itself, but her idea makes sense.

In order to better acquaint myself with this new perspective, I thought I’d try an experiment and take some time to think about all of the things I’m grieving. I know, it sounds like I’m doing the exact opposite of what I described in my plan, but hear me out. My thought is this: if I recognize all of the things that are causing me to be in this constant state of mourning, maybe I can finally let some of them go, rather than continue mourning their loss. Here goes nothing…

One of the things that weighs the heaviest on my mind is the loss of my dreams. When I was 11, I went to a concert given by the local high school’s Chamber Orchestra. The concert was a way of getting kids my age excited about learning to play an instrument; for me at least, it worked like a charm. I was hooked the minute they started playing, and when the violin solo started, I knew exactly what I wanted to play. I remember telling my mom right then and there that I was going to sit in that first chair one day.

Soon after, we were up at the music store picking up my rental instrument. Once school started and my lessons got underway, I drove my babysitter nuts with my incessant and admittedly, dreadful practicing. I worked my little fingers to the bone, and managed to land my first “major” solo the following school year. To say I was thrilled would be an understatement. By the time I reached the seventh grade, I was hounding my parents for my own instrument; that old rental just wasn’t good enough for me anymore. Eventually, they gave in, and we took that sad old violin back to the music store and traded it in for a new, shiny, honey colored “beauty”.

That same year, my school instructor suggested that I take private lessons to help me over the summer, which I eagerly took up. My first private teacher was a violinist in the Virginia Symphony, from her I discovered my next goal: to be a symphony violinist. Of course, I didn’t want to be just any violinist in the symphony, I wanted the chair of the Concert Master. I’m sure I drove my parents crazy with my constant prattling about all the solos I would get and how much money I was going to make.

I got older, and while my finger tips became callused, my beautiful, honey colored companion (who, for some reason became known as “Bob”), picked up some hard-earned nicks and scratches. In high school, I started taking lessons year round; I needed to get ready for my spot in the Chamber Orchestra! I “suffered” through the ninth grade in the “lowly” Concert Orchestra, although I was very proud to be one of two competitors for that coveted first chair. Finally, at the end of my freshman year, I was allowed to audition for the Chamber Orchestra. Not only did I make it in, I made it in as a violinist in the first section; not as the first chair, mind you, but at least I was in the right section.

My lessons ramped up and I went to as many competitions and extracurricular concerts as I could manage. All City, All State, Regionals, Senior Regionals, Festival, you name it and chances are I was in it at least once over the remainder of my high school career. Not to toot my own horn too much here, but I was pretty darn good. I’d be lying if I said I was “the best”, but I was among the top 5 violinists in all of the competitions I attended.

Finally, my senior year arrived. My chance to land that first chair spot that I had wanted since I was in the fifth grade. Disaster. Right at the start of the school year, I over did it and developed tendonitis in my right wrist. I couldn’t play. My orchestra director was less than sympathetic. Rather than saying “Rest up and get better”, he booted me to the second violin section, which to me at the time was just about the worst “punishment” he could have given me.

Not long after that, I was in a car accident that changed the course of my life. In a fit of stupidity induced by teenage invincibility syndrome, I whipped my little Honda Accord around a corner entirely too fast and managed to roll the poor thing end over end no less than three times. In all honesty, I should not be here writing this blog.  That accident should have killed both myself and my little brother. The responding police officer was so stunned that we both made it out alive and with only minor injuries that he told my mom he “couldn’t bring himself” to charge me with anything.

The injuries I sustained in the accident healed, and we all got on with our lives. The wrist problem, however, persisted. I didn’t injure it in the car accident, and I (unhappily) followed the doctor’s advice to let it rest for a few weeks. The pain wouldn’t go away. Convinced that the doctors I had been seeing were all idiots, my mom found a hand specialist for me. That poor doctor ran himself ragged trying to figure out what the problem was. I underwent every single test he could think of: MRIs, EMGs, X-rays, physical therapy, cortisone treatments… Nothing turned up and nothing helped the pain. As a last-ditch resort, I had arthroscopic surgery done on my wrist; it turned up nothing but a teeny tiny cartilage tear. The doctor cleaned up the tear and after a few follow-up visits, sent me on my way, convinced he’d fixed it.

Needless to say, I didn’t play my violin a whole lot my senior year. I managed to make it to all of the school concerts and one or two extras, but it was difficult to play with my body screaming at me that something was horribly wrong.
A few months after the surgery, I started having the same pain in other parts of my body. Long story short, it took another year or so to get diagnosed with fibromyalgia.

In the mean time, I all but gave up playing. I didn’t bother to audition for any of the ensembles or orchestras during college, and I resigned myself to being a has been or rather, a “could have been”. I still have poor old Bob, but he’s gotten rather dusty in his lonely, padded prison. Every now and then, I pull him out and play through a few old workbooks, but my hands have forgotten how to play and it usually just depresses me.

That, my friends, is just one of the things that was stolen from me by this invisible assailant, and I mourn its loss on a near daily basis. Looking at it now, I guess this is actually the story of two losses. Not only do I grieve for the loss of my ability to play the violin, but I’m also mourning the loss of that little girl who truly believed she was going to be “the best violinist, ever”.

This was certainly not an easy story for me to tell, as evidenced by the pile of tissues sitting next to me, but I honestly do feel a bit lighter now that it’s out. Only time will tell if I’ve actually managed to lighten my burden or not, but stay tuned, because I’m not done quite yet. There are more stories to share, as well as the hope of new dreams to replace the ones that have been lost.

The Spoon Theory

This has got to be the most amazingly accurate and easy to understand explanation of what it’s like to live with illness/disability. A must read!

Link

Thanks, Mom!

Throughout my entire childhood (including my years as a teenager), I my mom taught me many, many things: to tie my shoes, to cook, to say “please” and “thank you”… The list could go on forever. There was one thing, however that just didn’t stick, despite her increasing desperation to teach it to me as I grew older: tact. For as long as I can remember, I’ve called things as I see them with little to no thought about people’s feelings about it. I call it being “honest”, but most people consider it downright “rude”. True, over the years, I’ve learned to fake it, at least well enough to make it through normal interactions, but I hate every minute of it. Sugar coating things is just not in my nature. That being said, I’m about to be brutally honest, don’t say I didn’t warn you.

As a kid, I thought my mom was an idiot. (Sorry, mom!) It’s true, I did. In typical adolescent fashion, I tried to ignore just about everything that she said that didn’t involve me getting something that I wanted. There was just no way she could possibly have understood what I was going through, and I generally believed she existed only to make my life more difficult. The feeling gradually faded after I moved out, and I eventually came to see her as an equal.

Recently, however, it came to my attention that I was in fact, the idiot. Not only does she know more than I do, she’s willing to share! It turns out that mom really does know exactly what I’m going through, even though the circumstances may differ slightly.

To say I’ve been going through some difficulties lately is putting it extremely mildly. I would love nothing more than to divulge my story and get it out of my head but, it’s not entirely my tale to tell, so I have to leave it at “difficulties”. Throughout the entire disaster, my mom has been right by my side, holding my hand or leaving me alone as needed. It took me a long time to discover that she’s also a great listener, and even better, she’s got some amazing advice as well. Who knew??
Seriously though, my 16 year old self would never have believed it. Then again, my 16 year old self would never have believed the disaster my life has become, either. I’m pretty sure that at 16, I fully expected to be a world ruling, millionaire by the age of 29; certainly, I never imagined I’d end up as the victim of a disabling, invisible disease.

Regardless, the whole point of this post is to say “thanks, mom”. Thank you for loving me exactly as I am, thanks for the talks, the advice, and all the confidence that you have in me. I don’t know where I’d be without you. I may be posting this too late for Mother’s Day, but it needed to be said nonetheless.

P.S.- Don’t worry, dad, I didn’t forget you, Father’s Day is coming up 🙂

Mom and baby giraffe

Things never to say to someone with Fibromyalgia

Seriously, these are things you should never say to someone who suffers from fibro!

  • “Oh, everybody gets tired! I’m tired and achy too!”
  •  “You’re so lucky, I wish I could stay in bed all day!”
  • “There’s nothing wrong with you, it’s all in your head!”
  • “But you don’t look sick”
  • “You just need to get out of the bed in the morning, and then you’ll forget you have it!”
  • “All you need to do is get out and do some exercise!”

Thanks to Fibrofaery for posting this list, and make sure to go check out Fibrofaery’s Blog!

I have also been on the receiving end of many such well meaning, but ignorant comments. For the most part, I believe that many people are, (or try to be), sympathetic to this condition, but struggle with how to express it. I admit, we fibro sufferers tend to be a sensitive lot. For most of us, it took years of suffering through specialist after specialist telling us that they couldn’t find anything wrong before finally being diagnosed with Fibromyalgia. We’ve had to deal with countless doctors and nurses implying and sometimes, even making accusations that we’re merely drug seekers. If I get a cold or a sinus infection, and I have to go to an urgent care center, 9 times out of 10, the very first thing the doctor says to me is: “We do not prescribe pain medications to patients with Fibromyalgia”. Add these things to the depression, anxiety and other mental issues that come with fibro and you get a group of people who can be very difficult to talk to. It’s hard not take offense when people say such ridiculous things to you ALL the time.
Here are a few of my least favorite things that I’ve heard over the years:

  • “That’s a shame, you’re so young!”
    Fibromyalgia is an unpleasant disease to have no matter what your age. Yes, I was diagnosed at the age of 18, and while I understand what a horrible fate this must seem to people, please try to understand that I am still trying to live my life. I have to do things a bit differently than other people, but my life isn’t over, so please, keep your thoughts on my age to yourself.
  • “If there’s nothing physically wrong, can’t you just ignore the pain?”
    I am fully aware that there is nothing physically wrong with me, but my brain doesn’t. According to my brain and my nervous system, there is some kind of catastrophic damage to whichever body part is hurting at any given time. You can try to override these signals, but in the end, there is no way to reason with your body.
  • “You look great, you must be feeling better!”
    Want to know a secret? Sometimes, if I’m feeling particularly bad, I put extra effort into my appearance to hide the fact that I feel terrible. Now, that being said, please DO NOT turn it around and say “You look great, are you in pain?”. How about you just leave it at “You look great”. That’s all I really want to hear.
  • “Let’s get you out of the house, that’ll perk you right up!”
    Sometimes a change of scenery can help, but most of the time, all it does is give me a new setting to hurt in. I’m not trying to be stubborn or anything, but sometimes, I just need to find a comfy spot to curl up in and wait for the misery to pass. Prodding at me to “go out and do something” is only going to make me grumpy, which in turn makes the pain worse. If I feel that getting out of the house will help, I’ll suggest it myself.

 
Hopefully, this list will at least make people stop and think about what they’re saying, but if not, it at least gives me, (and my fellow fibro sufferers), somewhere to vent :).  If anyone out there has any other things they ‘d like to add to this list, please leave a comment!

THE Plan, pt II

Just in case anyone was wondering, there’s more to my plan than just thinking happy thoughts. I don’t have any fairy dust, but that’s ok, I’m not leaving for Never Never Land just yet. Part II of my plan basically entails getting healthy. I can’t cure the fibromyalgia, but there’s plenty of evidence to suggest that losing some weight might help. Convincing your body to go for a walk or do some sit ups when you’re in excruciating pain is no easy feat, but I’m just stubborn enough to try. I’m also working on improving what I’m eating, so even if I can’t exercise every day, I can still make some progress.

My current goal is to lose 45 pounds. No, I’m not sharing any other numbers 🙂 and it’s not polite to ask a lady how much she weighs! I’m already 5 pounds closer, after about three weeks of calorie counting and walking. With the support of my best friend, I’m going to participate in a 5k this coming October. Ideally, I’d like to jog the whole thing, but as long as I cross the finish line in less than an hour, I’ll be thrilled. I’ve already started a beginner’s training program and up until my knee decided to give out last week, I was pretty happy with the results.

I’ve had to put the 5k training on hold for a bit, to give my knee time to heal. I’ve discovered that working out on an elliptical machine is considerably easier on my joints than walking on solid ground. I’m going to try alternating the two for a while to see how that goes. Hopefully, in another week or two I’ll be able to pick the training program back up.

“Strength in Pain” or “Self Portrait”

This is a watercolor/pastel painting that I created about 6 or 7 years ago. It was originally drawn as my self portrait, kind of a look at myself from the inside. At the time, I felt as though I was separating into two different people- the “happy” me was escaping, while the “other” me was sinking to the bottom.

Whenever someone would ask me about this painting, I would always reply with “Well, what do you see?”. Very few people knew that it was actually my self portrait; it was just too personal and too painful to explain. I’m sharing it now because I don’t want to be that empty little person stuck to the bottom of the page- it’s time to rejoin that other side of myself. Hopefully someday soon, I’ll be able to share a new self portrait.

Image

Unlocked

Be warned, I’m about to do something that I’ve never done before, and it may come across as a bit awkward. I hope you can bear with me on this one.

This post is dedicated to all of the family and friends that I have locked out of my life over the years. I wasted a lot of energy trying to keep people away from me because I didn’t want to admit I was “disabled”. I was humiliated by the fact that I couldn’t always do the things that others take for granted. I have had days where the pain was so bad that I physically couldn’t get out of bed, days when walking the dog was a daunting task, and days when I couldn’t think clearly enough to load the dishwasher. I wanted to pretend that everything was fine, that I was perfectly normal, that I stopped working by choice, rather than inability. In order to keep up those appearances, I distanced myself from nearly everyone. I am able to admit this now not because my abilities have changed, but because I am starting to accept that for me, these issues are a fact of life.

I have pushed some people so far away from myself that “no more hiding” isn’t enough. In order begin making amends, I am not only inviting you, I would like to welcome you back into my life. I want to introduce you to the “real” me, not just the shadow person I allowed you to see. In my isolation, I found creativity and a strength that I didn’t even know I had; I want to share these things with all of you.

I understand that for some of you, it’s too late. I pushed too hard for too long and that you have given up on me entirely. For those that remain, I hope you can forgive me for allowing myself to become such an isolated hermit. I know this is not going to be an easy road to travel, but I do not ever want to that person again. Starting now, I am opening the doors and throwing away the key.

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