We are not alone

I have decided to start republishing posts from some of the blogs I read when I’m not posting my own writing. Not because I’m being lazy or I’ve run out of things to say, but because I find that one of the things that helps me the most is knowing that I am not alone in dealing with chronic illness. Having fibromyalgia or any chronic condition isolates us. We don’t want to bother others with our troubles and before long, we’re all alone in our own little bubbles of misery. I think it’s important to take the time to hear what others have to say and I am often pleasantly surprised when I do. It’s comforting to me to know that I am not the only one suffering from certain symptoms or feelings. I hope that by sharing some of what I find will bring comfort to others as well. 

Fibro flare up


The pain started this past Tuesday and has been ramping up all week. It feels as though my muscles are wrapped around brittle glass instead of the bones that should be there. It’s a sharp, grinding, burning pain, that seems to just appear out of nowhere. It started in my left foot, which is an unusual place for my fibro to hit. Normally, the pain is in my hands/arms and back, sometimes it hits my legs, but never my feet. I initially thought maybe I’d injured my foot exercising, but by Thursday, I was feeling the exact same pain in my hands as well.

I slept miserably last night. As soon as I laid down, the pain shrieked up my back and then down my arms; it’s very hard to sleep when your body is shrieking at you. Once I did fall asleep, the nightmares started, so the little bit of sleep I got was nowhere near restful. <SIGH>. Needless to say, I did not want to get out of bed this morning. I’m proud to announce that I managed it anyway.

It’s really hard to stay positive when you’re wrapped in layers of pain, but I’m trying. To be honest, as wonderful as it was to have a break from the misery, it just makes it seem so much worse now. It’s like being dropped into a tub of ice water after laying out in the hot sun all day; it’s a shock to the system.

Don’t worry, I’m not giving up. As soon as I get this posted, I’m going outside for my walk. I may have to shorten it a bit for today, but I refuse to sit on my butt until this flare up goes away. It will go away, I just don’t know how long it will take. On the upside, the flare up will help me add some things to “How to Fight Fibro”. See? Positive thoughts, hard at work.

Ok, slight change of topic here, but I want to make a point about positive thinking. What people don’t seem to understand is that thinking positively doesn’t make the pain go away. It just makes the pain more bearable. For me, the hardest part about fibro pain is that utterly pointless. Pain is supposed to be an indicator that something is wrong, it’s supposed to be fixable! By giving my pain a reason to exist, (for example: if I’m hurting, I’ll be more likely to write about things that help make it better), I’m making it easier for me to deal with, which helps to keep me from falling even further into mental misery.

Now, it’s back to the fight, wish me luck!

THE Plan, update #5

Toot! Toot!

Yeah, that’s me, tooting my own horn, again. 🙂 I’m afraid that I have to brag for a minute or two- yesterday, I actually jogged for 2/3 of a mile. Not all in one go, I did 1/3, walked for a bit and managed to do another 1/3. I know that there are tons of people out there who run 5 or miles in a shot, so I’m sure to some, my 2/3mi isn’t all that impressive. It’s impressive to me though!

If you had actually known me before I started on this fitness kick, you would know that movement of any sort was just not something I did. To put it bluntly, I was a lazy slug. I made it a point not to do anything more that I absolutely had to. I’m not proud of that, as a matter of fact, it’s down right embarrassing for me to admit. However, I am incredibly proud that over the course of three months, I went from being a lazy slug to being able to walk three miles a day just because I can.

All that walking has also helped me lose weight. I’ve dropped another 4lbs, bringing my total to 20lbs lost over the last three months. Woo hoo! 🙂

I am having to re-evaluate my program a bit, since I’ve hit a minor plateau over the last few weeks. Part of that plateau is due to the fact that I sort of tell off of my diet wagon for a bit, but I’m back on it. No more cheating!

I’m also pushing myself to work out a bit harder; instead of a 30 minute walk, I’ve upped it to 45 minutes or an hour if I feel up to it. I wasn’t kidding about doing a 5k in October. I’m really going to do it, and I’d really like to do it in a reasonable amount of time. Jogging for a full 2/3 of a mile, (in 90+ degree heat!), is a pretty good start. I’ve got about 2 months left to work up to it. Do I really think I’ll be able to jog the full 5k..? No, I don’t. I hope that I’ll be able to, but realistically, I don’t think I’ll be able to jog the whole thing. That’s ok, maybe I can jog the next one!

Sit back and listen.

I know this may come off sounding trite, but for me, relaxing really does help with the pain. Sometimes it just helps to find something to take my mind off of it, the pain doesn’t go away, but it is possible to set it aside for a little while. There are an infinite number of ways to relax, so rather than give you an insanely long list of suggestions, I’m just going to start with one that actually works for me.

One of the best ways I’ve found to relax is by listening to music, classical pieces seem to work best for me, so I’m going to share one of my favorites: Flugufrelsarinn (Sigur Ros) as played by the Kronos Quartet. I absolutely love this piece. Nearly every time I listen to it, I get lost in the beauty of it all. Seriously, turn it up, sit back, close your eyes and let the music just flow around you. Sadly, it’s only about 8 minutes long, but for me, it’s usually 8 minutes where I can ignore whatever pain I’m feeling and be free of it.

I’d love to hear what you think about this idea, and if it works for you, what are your favorite song choices?

How I Fight Fibro

I decided to try adding a new category to the blog, called “How to Fight Fibro”. Normally, I wouldn’t bother announcing a new category, let alone explaining it, but this one is a bit different.

Every fibro fighter is unique, and experiences the disease in their own way. That being said, perhaps I should rename the new category to “How I Fight Fibro”. I’m not going to fill this section with the random ramblings of the internet; this section is purely for things that I have personally tried and have found to work for me. Just because something makes me feel better doesn’t mean it will make anyone else feel better, but I’m hoping that my posts will help others or at the very least, maybe spark a new idea for someone else.

Just so you know, I am incredibly skeptical when it comes to trying new things; I have never been one to run out and try every latest new product or idea. It usually takes me awhile to warm up to the idea of new therapies and even longer to actually try them. So please, don’t expect me to post reviews of any “As Seen on TV” products or brand spanking new technologies purported to help ease fibro suffering.

I’m aware that to some, this new category may seem unnecessary, considering that this entire blog is basically meant to detail my experiences with fibromyalgia and how I’m coping with it. However, my main focus is on diet and exercise, something that many of you feel is out of your reach. I’ve gotten a LOT of comments both here and on the Facebook page sayings things like “I tried that, but it only made the pain worse”, or “I can’t even get out of bed, how am I supposed to exercise?”. This new category will not focus on exercise or any other form of physical torture, there may be the occasional mention of a specific stretch or movement that I’ve found to be helpful, but overall, it will be exercise and effort free. 🙂

Believe it or not, I truly do understand how hard the fibro can make it to even think a single clear thought, let alone attempt to get out of bed. I’ve only made it this far due to sheer stubbornness; there’s no “secret” to how I manage to force myself to work out when I feel like a flaming pile of doggy poo. I promise that if I ever stumble across something amazing, I’ll share it. If I could bottle my “sheer stubbornness”, I’d give it away for free (as long as you pay for the shipping costs!).

Anyway, I’ll be posting my first suggestion shortly, I hope it helps!

Writing my way through a rough day…

Dear World-

I’m writing today to inform you that I am done playing your games. I am going to play my own game, by my own rules.

I am tired. I am tired of being made to feel like I’m not good enough for you. I’m sick of feeling like I’m being measured by your standards and coming up short. I’m not happy enough, I’m not thin enough, I have a terrible temper, I have an invisible, incurable disease… my imperfections are many, and you’ve never let me forget a single one.

I feel like every time I try to pull myself up, to better myself, you are compelled to trample me. You hold the ideals of what I aspire to be against me to show me what I am not. You push every button, gouge every wound and grind away at me until I slip back into old habits, thus giving you “proof” that I have not changed.

Change is not easy. It does not happen overnight. It is a process, a slow, grueling climb up a slippery slope. Before you judge me on how slow my progress is, why don’t you try to make some changes in yourself and see how they go?

I have finally realized why you insist on putting me down. You’re afraid of what I might become. You’re afraid that I might actually become the phoenix and rise from my ashes as something more brilliant than even your so called “standards”. What then? What would you do if I surpassed everything that you’ve used to measure me with?

That being said, I’m done allowing things outside of my control to control me. I’m not going to allow you to make me feel worthless or miserable any longer.

I am not perfect and I admit it freely, but I know now that I am not the worthless creature you would have me believe I am. I know now that I am the only thing keeping myself from being happy. No one else can make me happy, and no one else can truly take my happiness away, unless I allow them to.

I may forget it occasionally, but deep down, I know that I am a truly amazing person. I have been brought down, kicked and trampled, yet I keep fighting. I keep getting back up. I may be down, but I’m not out.

I don’t need you to remind me of my imperfections, I keep the list handy so that I have clear goals to focus on. True, I may not be able to “fix” all of them, but perhaps I can at least find a way to make them less noticeable.

Take my temper, for instance: I will probably always have a “passionate” streak, but I don’t have to give in to it every time it rears its head. Perhaps I can even find a way to put it to some constructive use. The important thing is, I know it’s an issue, and I’m not letting it continue unchecked.

Feel free to hang on to your little list of my imperfections, I’m sure at some point, when you need a pick me up, you’ll be able to look at it and it will make you feel better about yourself. As for me, I’m going to continue to keep it nearby, but I think I’ll focus more on my better qualities:

I am:
– a fighter
– loyal
– caring/loving
– strong
– intelligent
– passionate
– creative
– an excellent cook
– compassionate
– honest
– courageous
– persistent

You may choose to overlook these qualities because you feel that they aren’t good enough to make up for my “lesser” traits, that’s your prerogative. I, on the other hand, am quite proud of these and plan to make the most of them.

Albert Einstein once said, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid”. You may judge me against whatever standards you wish, it makes no difference to me, as I know exactly what I am and what I am not.

It is human nature to want to feel accepted and appreciated, and I won’t deny that I do want your approval. However, I do not need it. It is not vital to my life, it would just be nice to have.


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.