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More things never to say to some one who has fibromyalgia

Seriously people, what’s with all the negativity? I feel like I’m swimming in it lately. There are just too many people around me who seem to be waiting for me to fall flat on my face. I keep hearing things about what I can/can’t do, or what I can expect out of life. The ridiculous thing is, they don’t even have fibromyalgia; they have a “basic understanding” from what they’ve read on the net or have heard from other people who don’t have the disease either.

With that in mind, I’ve got a few more things to add to the list of things to never say to someone battling the invisible menace.

  • “I know someone who has that, their life is miserable!” OR “I know someone who has that, but it’s nothing like what you’re describing.”

    Rule #1 about fibromyalgia: it’s different for every single person that has it. That’s why it’s so hard to diagnose and treat. No two cases are the same, they may have similarities, but you cannot compare them. Just because things went one way for one person does not mean they will be that way for anyone else. Part of the reason things are so different from case to case is simply due to the way people react to having it. True, at some point most of us go from being angry to being devastated (or vice versa) and then eventually we accept that we have to live with it. How you decide to live with it is entirely up to you, and will undoubtedly have some impact on how the disease affects you.
  • “It’s only going to get worse as you age.”

    REALLY?! Think about it for a second, does anything health wise actually improve as you age? Unless you’re Benjamin Button, EVERYTHING gets worse as you age. Your metabolism slows down, your joints wear out, your memory starts growing holes in it, your hair falls out and you get all wrinkly. Sure, old age probably isn’t going to help the fibromyalgia any, but it shouldn’t be a surprise to anyone that it might be worse in your sixties than it was in your twenties. The upside is, there is research being done and eventually, they will come up with something that helps.
  • “You can’t possibly expect to have a ‘normal’ life with this disease.”

    Actually, yes I can. Not only do I firmly believe that a person can do anything they put their mind to, my belief in myself is unshakeable. I know myself well enough at this point to be able to say with 100% certainty that if I want to do something, I will. True, having fibro adds about 50 pounds to the weight of the baggage I’m lugging around, but it only makes me that much stronger. I’m not saying that I can wish the disease away, or that if I ignore it, it doesn’t exist. Short of some miracle cure, I will always have fibromyalgia. I know that. However, I also know that I am creative enough and flexible enough to find a way to do anything I want to. That’s just me personally, I’m certainly not saying that everyone who has fibro is going to be able to do the same, but I think many people would be surprised if they tried. One major thing to keep in mind is that the goals I have for myself are realistic. When I say I can “do anything I want to” I’m not implying that I could be an astronaut or that I want to climb Mt. Everest.
  • “What happens if your plan stops working and you start feeling bad again?”

    Eventually, my body will get used to the endorphins from exercising, and losing weight will only help so much. I’m sure that at some point, I’ll have to go back to the drawing board for a new way to fight the pain. I started this experiment with the diet and exercise with no real expectations of success. I know now that it is possible to alleviate the pain. I’ve also learned that the way I react to the pain is the most important factor in how the fibro affects my life. I can’t always stop the pain, but there’s no rule that says I have to be miserable about it. Ok, so I have to spend a day or two or three in bed; as soon as I’m able, I’ll get back up. In the meantime, I can read a good book, watch a new movie, write a new blog post… Yes, it sucks to be forced by your own body to stay in bed all day, but there are worse fates. I’ll take my victories where I can get them, as long as I wake up, I win.
  • “Oh, you’re just in an ‘up’ phase right now, you’ll have a ‘down’ swing eventually. You won’t be able to fight it forever.”

    Want to bet? I didn’t call this blog “Fighting Fibro with Fire” just because I thought it sounded good. I am determined to fight this until the day I die. I know that there will be setbacks, and I know that I will have bad days, but as long as I breathe, there is always tomorrow. I have been in the dark, I have seen what rock bottom looks like and it terrified me. Mark my words: I will not ever go back there again. I found the strength to pull myself back from the edge of the abyss and I know without a shadow of a doubt that I am strong enough to keep myself from going back.

Part of me feels that these lists shouldn’t be necessary, that not saying these things to people with chronic illnesses should be common sense. Obviously, that’s not true, seeing as the only reason I am able to compile these lists is because people have said them to me. Initially, when I started writing this post, I was angry and ready to tell the people who said these things to “go to Hell”; after typing all of this up, I find that the anger has dissipated and all I feel now is determined. I am determined to prove these statements wrong and I am certain of my success. All I want to say now is, “hit me with your best shot”.

THE Plan, update #2

inspirational-quotes-adjust-your-sails

I love this quote, because it describes exactly what it is that I am working towards. I know that there are many obstacles in my life that I simply cannot change, so instead, I’m working to change how I get around them. It sounds simple enough, but sometimes it takes a tremendous amount of effort to react to situations the I want to rather than the way I’m used to reacting to them. Some habits are hard to break, but they can be broken.

With that in mind, it’s time to take a look at the plan I came up with to help me deal with being chronically ill. Just to recap, here’s a brief overview of my actual plan:

  • Get Happy: This is kind of a mind over matter approach, I’m learning to change the way I react to situations. I’m learning to control my temper and to always look at the brighter side of things. I’m seeing a therapist, who’s helping me learn to deal with stress and the depression that comes with fibromyalgia.
  • Get Healthy: I’m using a combination of diet and exercise to improve my overall health. My goal is to lose a total of 45 pounds.

It’s that simple.

I’ve been working on these things for just over six weeks now, and while I’m nowhere near saying “I’m done!”, I am making tangible progress. I’ve been counting my calories religiously and have actually managed to stay at or under my daily calorie budget every day for the last 45 days. I’ve also been able to stick to a low impact exercise plan. I’m not able to exercise every single day, but I do average about 4 times a week.

I’ve now lost a total of 14 pounds. 🙂

One of the other benefits that I’ve noticed since I’ve been exercising regularly is my mood. My depressive episodes have decreased dramatically and it’s getting easier for me  to keep control of my temper. I’m not having crazy mood swings either. Yesterday, I noticed that I was actually completely content for no apparent reason. Today, I’m still inexplicably happy. For me, that’s a pretty big deal.

My pain levels are down, but the pain isn’t completely gone. Prior to starting my new routine, my average pain level was an 8 out of 10. Now, it’s about a 4-5. I still have the debilitating flare ups, but they don’t seem to last quite as long. Last night, for instance, my right hand/arm got so bad that I literally couldn’t use it; we’re talking an 11 out of 10. I’ve had many, many instances like this before, but thankfully, they have become less frequent.

The fibro fog is still a major issue; I’m having difficulty concentrating on conversations, I forget what I’m doing in the middle of tasks, words get jumbled when I speak… yeah. The fog is pretty frustrating, but given the choice, I’ll take the fog over the pain any day.

I really can’t complain, life is good. The best part is, I know that as long as I keep fighting, things will only get better.

The Plan in Action, Update

Item number 7 on my list of things to do today was to report back on how my day went, so here I am! I’m feeling much better than I was this morning; my pain levels are a considerably more manageable 4-5 at the moment and I’m still in a great mood. I am, however, utterly exhausted. I didn’t get a chance to take a nap, so I’ve decided to go to bed early instead.

As for the rest of my list, I have to admit that I didn’t stick to it very well. Obviously, I completed number one this morning and I did get to relax with a cup of tea and my book. After that, things didn’t go exactly as planned. Instead of lounging outside, I spent a good chunk of my morning following the stock market. My dad is trying to teach me a thing or two about day trading, so I figured the least I could do was put some effort into it. 🙂 No, it’s not the most exciting, (or relaxing), thing to do, but I did learn some new things and hopefully, someday I’ll be able to make some money doing it.

I did make it to item number four, I spent a very pleasant afternoon chatting with my mom and dad in law. It’s the first time since I started this project of mine that I’ve actually sat down and talked to them for more than a few minutes. Sadly, they were among the group of people who I previously pushed away from myself, today’s visit was my first step towards truly letting them be involved in my life.

You know what? It was awesome and I can’t believe I didn’t do it sooner.

I really wasn’t sure what to expect since I’ve never really spent much time with them when my husband wasn’t around. I know, that probably seems odd, but I really did spend entirely too much energy keeping people away from me.

Regardless, it was a great afternoon, for the first time ever, I opened up and actually talked to them. I told them about my plan to heal myself and invited them to follow my blog. I cried my eyes out while my second mom held my hand as I explained how truly miserable I had been and how ashamed I was of my behavior.

Not only had they already forgiven me, they understood why things had been the way they were and all this time had just been giving me space to do what I needed to do. Seriously, I could not ask for a better family than the one I have; I have four fabulous parents who, whether I was aware of it or not, have been behind me every step of the way and continue to support my efforts as I work towards putting my life back together.

Since I know they’re all reading this, I just want to say: thank you, from the bottom of my heart, thank you.

I spent the entire afternoon and part of the early evening with my in laws, which is why I didn’t get around to that nap. After such an emotional, (but profoundly amazing), afternoon, I was too wiped out to take the walk I had planned either. Seriously, it’s just about bed time.

Even though my day started out utterly miserable, and didn’t go exactly as planned, I’m going to call this experiment a total success. I was able to get past the pain and fatigue without hiding in bed all day. I may have been short several spoons, but I was able to carry on with my plan to bring the people I love back into my life.

Today, I won.

“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!

Caution: Vent Ahead

In case the title didn’t give it away, this post is purely for venting purposes. I had a conversation yesterday with a long time friend of mine, that upset me. I’m not going to name any names, they know who they are, (if they even read this), but for the rest of you, let’s just say that I’ve known and been friends with this person for over 10 years, but we’ve been a bit out of touch recently. So, in their defense, they aren’t exactly familiar with the “new” me; however, their words did upset me and at the time I was too busy trying to maintain my composure to formulate my response.

Basically, we were discussing any and everything, like we always do, and somehow the subject of me having children came up. I admit, over the years, I’ve been a bit wishy-washy on the subject; sometimes I was sure I wanted them and sometimes I was positive that I didn’t. Mother nature has finally caught up with me and I finally feel like I would actually like to have a kid or two at some point. Not right now, but someday.

After I got done saying this, my friend asked, “How in the world do you think you could take care of a child? You can barely take care of yourself?!”.
It wasn’t said to be mean or hurtful, but it did hurt, especially since I’ve been working tirelessly to turn over a new leaf and my friend hasn’t really been around to see the changes I’ve made in my life. I guess I feel like they should actually take a good hard look at the changes I’ve made in my life before making such a harsh statement.

I’m working hard to better myself and my situation, and to be perfectly honest, I’ve done a darn good job so far. I’m not lying around in bed all day, I’m making myself get up, get dressed and do things, even on the days that it feels impossible. I’m not only exercising at least 4 times a week, I’m learning how to eat and yes, cook healthier. I’m working with a therapist to get through some of the mental/emotional issues that I have, and even learning to better control my temper. I’m not nearly as prone to temper tantrums as I once was, I’m practicing taking a step back and assessing a situation before I react. Yes, I still have days where getting up and getting dressed are about as much as I can do, but who doesn’t? EVERYONE has off days, not just me, not just people with chronic illnesses. Sure, those days may be a bit more frequent for those of us who have to count our spoons, but I am confident that I can handle it.

The truth is, that yes, I’ll need help, but isn’t that what husbands/fathers are for? It’s not like I’m planning on spontaneously spawning; I have a husband, who is more than capable of being a parent as well. On top of that, I have four wonderful parents (my own and my in-laws), who would make fantastic grandparents and I know would be more than thrilled to help out when needed.

Everyone who has ever become a parent knows that once you bring that extra life into the world, you have to rearrange things. You have to come up with new ways to deal with situations and new ways to do every day chores. Guess what? I’m already used to having to do that and I can be pretty creative when I need to be, I’m also not afraid or ashamed to ask for help when I need it. In my book, that puts me one step ahead of “normal” parents; they have to adjust to doing things differently.

Don’t get me wrong, I’m not trying to say that my having children will be a cakewalk. I know that there will be difficulties that I can’t foresee, but that’s just life.
I’m simply saying that when the time comes, I feel confident that I have the ability, the tools and the determination to be a great mom, even with fibro.

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!

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