Love

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Love this quote

“You were put on this earth to achieve your greatest self,
to live out your purpose, and to do it fearlessly.”
– Steve Maraboli

Something to strive for

Something to strive for

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The Plan in Action…

inspirational-quotes-its-impossible-said-pride

Why is it that the pain is always the worst at night? It can’t just be me who experiences this obnoxious phenomenon, right? I lie down, exhausted from a long and trying day; I am just about asleep when the little fibro gnomes in my body decide to declare war on me.

I think I must have laid there for about three hours trying to fall asleep while the evil gnomes pulled the muscles from my bones one fiber at a time… Sorry if that’s a bit too graphic this early in the morning, but to be honest, it amuses me to come up with new and disturbing ways to describe my pain to people who don’t have fibro. I’ve got to find the bright side somewhere! 🙂

Considering the multi-hued handful of pills that I have to take at night in order to get to sleep, it’s pretty scary that the gnomes are able to keep me awake. Just so we’re clear, I’m not up early to make this post, I just haven’t gone to sleep yet. Ugh, it’s going to be a long day.

However, there’s still a sort of bright side to it; this is a perfect day to test out my theory concerning changing how I react to my illness. Just as a quick recap, my plan is to change the way I react to the fibromyalgia in order to stop it running my life. That being said, I’m going to come up with a basic plan for how I’d like today to go, even though I’m in serious pain.  Here’s my plan for today:

  1. I’m not hiding my pain. Instead, here I sit, putting it out there for the world to see.
  2. Enjoy a nice, relaxing cup of tea, while I read a good book. I’m currently reading Ender’s Game, by Orson Scott Card.
  3. Once it warms up a bit, I’m going to, (get ready for this!), go outside. Granted, it’s not like I’m going to go out there to do yard work or anything, but I think soaking up some sunshine will be good for me.
  4. Shower. With any luck, that will help relieve some of my discomfort.
  5. Assuming that I’m not in too much pain, (or too tired), to take a short drive, I’m going to go visit my in-laws for a little while. Luckily, they’re not far, so it should be feasible.
  6. Honestly, I’m probably going to need a nap right about now.
  7. I’m going to try to get in a little bit of exercise. I’m not going to go crazy, but if I can get in a trip around the block, I’ll be happy.
  8. Report back on how the day actually went, and be totally honest about it. I know that to most of the population out there, that’s probably a pretty lame plan for an entire day, but remember, I’m running on zero sleep and right now, my pain level is bouncing between 7 and 10. I’m a bit short on spoons today, so I’ve got to be realistic about what I can actually do.

The truly amazing thing is that, even though my pain levels are through the roof right now, my mood is great. True, this could be due to lack of sleep, but I’m going to be optimistic and say that maybe, just maybe, my plan to change how I react to my pain is actually working.

Logic and reason are definitely telling me that this is impossible, but if I don’t at least try, I’ll never know.

I’ll check back in later tonight to record my results, in the meantime, I hope everyone has a fabulous day!

“Shades of Love”

Shades of Love WM

This is one of my favorite pieces, but it actually happened on accident. I was just playing with some watercolors, experimenting with the way they moved across the paper and I fell in love with the way the colors came together. I call it “Shades of Love” because I believe that love is made up of many different emotions. Affection, loyalty, passion, longing; I think it’s safe to say that most people can easily equate these emotions with love. Then I realized that there is another side to the story; the side no one really likes to think about. Jealousy, anger and even hatred are also facets of the complicated equation we call love.

Think about it: when you are truly in love with someone, they have the power to get under your skin like no one else. The strength of your love allows them to know exactly which buttons to push to make you angry or jealous. I’m not saying that you should be angry or that your partner should use their power to make you angry, I’m just saying that only someone who truly loves you has the power to draw out your strongest emotions, negative or positive. The next time you and your lover get into an argument, try and remember that the only reason that you (or they) are so angry is because you’re in love. Just see what happens 🙂

Of course, this theory also works on other things that you love, not just people. Think for a moment, about issues that you feel strongly about. Why, for instance, do I see red when I hear about the abuse of children or animals? Because those are both things that I love. I don’t just ” like” them, or even “like, like” them. If that were the case, I wouldn’t get so angry when I look at the news headlines.

I would love to hear your thoughts on this little theory of mine!

For those of you with an interest in the piece itself, it’s a watercolor and charcoal painting, entirely of my own design. If you would like to see more of my work, please visit me at DeviantArt!

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.

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!

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.

THE Plan

“You can’t change anything about the disease, so I don’t understand how you plan to change how the fibro makes you feel.”

I swear, if I hear that statement or any similar sentiment one more time, I’m going to unleash the full fury of my red-headed temper.

No. I cannot change the fibromyalgia. I can however, change MY reaction to it. Think of it this way: you’re wearing brand new shoes and you step in a lovely pile of doggy doo. How do you react? You have a choice: you can rant and rave, you can cry or you can laugh. Whether you realize it or not, you choose how you react. It just happens so quickly that most of us don’t even recognize that it was a choice.

I am choosing to laugh.

When the pain starts, rather than get depressed and angry (aka turn into a gumpy porcupine), I am choosing to think happy thoughts and redirect those unpleasant emotions. Yes, there will be days when I’m in so much pain I literally can’t get out of bed. I can’t change that, but I don’t have to lay there and feel sorry for myself either. I can call a friend, I can watch The Lion King (it’s my default “feel better” movie, don’t laugh!), I can even lay there and sing random songs at the top of my lungs if that’s what it takes to perk me up. Even better, maybe I can pull up my laptop and share my feelings here.

I realize that this is a slightly strange sounding plan, but for right now, it’s THE plan. I’ve tried more medications than I care to think about, they either don’t work for me or make me so addle brained that I can’t even manage to feed myself without destroying something (true story!).  At this point, my pain management doctors literally can’t even come up with any new drugs for me to try- I’ve gone through all of them. I’ve done physical therapy, all that did was irritate me and make me even more depressed. I’ve also tried going to a chiropractor, various herbal supplements, stress management therapy, relaxation training… You name it, and over the last 12 years, I’ve tried it, (with the exception of acupuncture- the thought of it alone is enough to make me queasy).

I won’t deny that I’ve spent the last few years allowing myself to be a miserable wretch- that much is undeniable. The thing is, at the time, I didn’t understand that I was choosing to be that way. It’s taken a lot of heart ache and emotional trauma to pry my eyes open to that fact. It took me hitting rock bottom to see that I was responsible for my own suffering- it’s not an easy thing to realize. It’s so much easier to blame outside forces. That little shift in perception has made all the difference for me. I can see, now, with startling clarity how my every action fed into the negativity surrounding me.

Feel free to ask questions, I don’t mind trying to explain, just please keep the disbelief and negativity to yourself 🙂

As of this moment, my new plan is being severely tested- I’ve been in non-stop, 8/9 out of 10 level pain for about 5 days now. To be quite honest, the pain is starting to wear me down. I haven’t sprouted quills yet, but my temper is bubbling very close to the surface. It’s getting harder and harder to not simply break down and cry. I had hoped that when I had a flare up like this I might be able to go for a walk or do some other kind of exercise, but since the pain is centered in my knee and it doesn’t want to support any weight, the best I can currently manage is a Quasimodo like hobble. I’ll come up with something though, I’m not ready to give up yet! I plan to get back on track with my daily walks tomorrow; even if I can only manage a few minutes, it’s better than being cooped up in the house.

No more hiding

My name is Christina and I have fibromyalgia.

Up until very recently, that is how I identified myself; in my own head anyway, I didn’t actually go around introducing myself to people like that. My point is that after I was diagnosed with Fibromyalgia in 2001, I slowly but surely stopped thinking of myself as anything other than a sick person. My disease became what defined me as a person and it took control of my life. I got caught in a seemingly endless cycle of pain, insomnia, confusion and depression, and I couldn’t see any way out of it. My family did their best to be supportive, but I got so sick of being asked: “How are you feeling?” and “Are you in pain?”, that eventually I started to withdraw from everyone around me.

Fibromyalgia is a particularly insidious condition: it leaves you inexplicably exhausted and often in so much pain that it’s difficult to think clearly, yet, there is nothing physically wrong with you. You go from specialist to specialist explaining how much pain you’re in and suffering through test after test only to be told that they can’t find anything. Eventually, the doctors begin to suggest that maybe it’s all in your head and you start to believe it. Even after I was finally given the diagnosis of Fibromyalgia, the lack of any tangible evidence of the illness continued to plague me. I was angry at my body for betraying me, for making me feel excruciating pain for no apparent reason. I was humiliated whenever someone would ask me why I was limping or holding my arm strangely and the only answer I could give was that it was because of this invisible disease.

I did what I could to hide my pain, unfortunately, the only way I could really hide it was by keeping people away from me. Before I even knew what happened, I had turned into a grouchy, miserable, hermit. I created my very own “pit of despair” (if you haven’t ever seen The Princess Bride, I highly recommend it!), and there I sat, huddling in my own misery. In 2008, I was forced to stop working altogether because I just couldn’t handle the stress. I applied for disability and spent years fighting for it before it was finally awarded to me in 2012.

Meanwhile, my life fell apart, my relationships disintegrated and suddenly, I was alone. I am somewhat ashamed to admit that even after all of this, it took me several more months to realize that I was the cause of all my problems, not the Fibromyalgia. My epiphany came one night when I was sitting in the empty house wallowing in self-pity; I had been half heartedly contemplating suicide when I had a sudden vision of myself lying on the bathroom floor, covered in blood. It was in that moment that I realized I needed help. That one terrifying vision kick started my survival instincts and provided me with enough adrenaline fueled clarity to allow me to see the truth: the only thing keeping me from being happy was me.

I made the decision right there and then to get help, to finally go and speak to a therapist about how to deal with my illness. That first decision to seek help kept me going for the next few days until my appointment with my pain management specialist where I told my doctor the truth: I was depressed and in desperate need of someone to talk to. I had known that I was depressed for a long time, but like my pain, I was trying to hide it; when I finally admitted it out loud, I felt as if a long-lost part of myself fell back into place. I found the strength to step back and look at the mess I had made of my life and then I found the resolve to change it.

Which brings me (finally!), to the reason I’m writing this blog in the first place. I know that I am not the only person out there who suffers from this despicable disease, and I’m willing to bet that I’m not the only one to ever get lost in it. I want to share my story not just because I don’t want to be alone with it anymore, but also because I hope that maybe it can help someone else. I’m not a therapist or an expert of any kind, I’m just a woman who has decided that enough is enough. I refuse to let Fibromyalgia rule my life anymore. I can’t change the disease, I can’t make it go away, but I have come to realize that I can change the way I react to it. So, I’m going to start by putting my story out there, my first change is to stop hiding.

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