When people ask, "How are you feeling?", can they handle the truth?

When a person asks someone with chronic illness, "How are you feeling?", most of the time the inquirer is not prepared for the answer. Here's the bottom line:

Chronic Illness is uncomfortable to talk about for people who have never experienced it. I've already done a post on "My Do's and Don'ts of Fibro Talk". 

Today though, we're talking specifically about the dreaded question, "How are you feeling?"

Why is that question "dreaded", you ask? Let me explain, from my personal perspective, at least.

When someone asks me how I'm feeling, I have two options:

1) I can give them the answer most people want to hear: "I'm fine." This relieves any responsibility of the inquirer having to listen, understand, or sympathize. Yet, it allows them to feel good about themselves for asking in the first place. It ends the conversation quickly and allows everyone to go back to their business. Done and done.

Yes. It sounds callous. But our society has resorted to empty greetings in passing because most people are too busy/distracted to really listen. It doesn't make them a bad person. It just makes them a typical human. When I answer like this and I'm not really "fine", I feel like I'm cheating myself and I hate not being truthful. Which leads me to my second option...

2) I can tell the inquirer the truth. Some days, the truth is "I'm fine." Most of the time, however, people inquire when they notice you aren't feeling/looking well. Personally, I feel guilty or bothersome when I answer truthfully. People who don't live with chronic pain are able to be more carefree and positive. I'm not saying those with chronic illness are negative, but a huge part of our survival is being real with ourselves. And just because we're acknowledging we aren't feeling well, that doesn't mean negativity for us. It's just another part of our typical day. We  rarely get "carefree days," if ever. I tend to feel like a Debbie Downer though when I'm honest with people about my pain levels because it isn't the "typical response" to the question. I tend to be emotional when I'm in pain anyway. So for me, the reaction from the inquirer can really affect the way I'm feeling about myself. 

Being honest with someone about my pain levels is a very intimate, vulnerable thing for me.  I don't like to admit my pain often. The less I talk about it, especially when its really bad, the less over-whelmed I get. I choose very carefully who I talk to about my pain and struggles. A statement I made in my "Do's and Don'ts" post is to please not handle me with kid gloves. If I openly talk to you about my pain, I'm not expecting you to fall all over me with sympathy. In fact, for those who know me, I tend to approach things with humor. Even though this illness is a very serious thing in my life, sometimes taking the seriousness out of it helps me to cope. 

The reality of it is, I'm reminded daily that I can't live my life like a normal 25yr old newlywed. So to cope, I like to say things like, "I'm going to cut off my elbow", or, "I really need a back transplant", or, "I'm going to punch my immune system in the face." Granted most of the time my friends and husband reply with, "I'm going to have to advise against that." But they understand. That's what makes me feel better.

However, in the rare times I am serious when I share how I'm feeling, I know it can be awkward for the person inquiring. What do you say to someone who has a condition that has no cure? I've already gone over what NOT to say. If you are ever in need of an appropriate response, here are some that could help:

"I'm sorry you're hurting. I'll pray for you."

"That really sucks man. Hang in there."

"I'm sorry to hear that. I hope you feel better."

However you decide to reply, remember to be GENUINE. We can spot fakes a mile away.

An example that actually happened today that is NOT an acceptable response (and a great example of Option #1's reaction) is this:

Inquirer: How are you feeling today?

Me: Thanks for asking… My back and hands are still really bothering me. My chiropractor told me I was a “train wreck” yesterday…and I do have to say, I feel like a train ran over me a few times. I think it’s just the fluctuation in weather. I’m hoping to be feeling better by this weekend. I’ve got so much to do with the church event on Saturday.

Inquirer: Great. Glad to hear you're feeling better.

I'll pause so you can process for a moment.....

Yes. That actually happened. And this is why I try to choose carefully who I am honest with. Clearly this is a person I should have replied to with, "I'm fine." They weren't really interested in the answer. 

My advice today is PLEASE don't be that person. If you're going to ask, be prepared that you may not get a quick and easy response. Our lives aren't quick and easy. Everything is complicated, and once in a while, explaining that to someone makes us feel a little better. If you are chosen to be that person we share details with, try to be a good listener. If you don't know what to say, its OK. Just don't respond like the person above did. A response that is inappropriate based on the information given is not only frustrating, its down right hurtful.

This post goes out to all of my fellow Chronic peeps that are afraid to answer with the truth. 

Baylee's Fibro Team

You know the saying, "It takes a village to raise a child." Well, I feel like we could also apply that to Fibromyalgia, only it would be, "It takes a team to support a Fibromite." Or something like that. I'm sure you guys could come up with something better. 

The point of this post though is to give a shout out to all of the different people who make up "Team Baylee." They will be listed in no particular order, by the by.

Dr. Collins- My rheumatologist, the sweet lady I see once a quarter, and the lady who hooks me up with my meds. Every appointment we go over my pain levels, she re-examines my body to check for new issues, and she makes it a point to address not only the pain but the psychological side of the disorder. She's listens to me when I tell her something isn't working, and she is always helpful when I call to ask about adjusting my medication. This woman has definitely found her calling. Every time I leave my appointment, no matter how upset or discourage I was when I walked in, I always feel refreshed and ready to go fight some more. 

Target Pharmacy Team- I LOVE my pharmacy. I get the best customer service from them (except for one time, but it was an isolated situation.) I can never keep track of which medicine I'm actually supposed to be picking up. All of my med refill dates over lap and I never know which one is up. The few times I've ran out of refills they've taken care of me and are always willing to contact my doctor for me. They are just AMAZING! 

Rachel- The nice lady who used to listen to me talk once a week. I don't see her anymore for financial reasons, but she was there through everything that happened over the year before I got my diagnosis. She is the first therapist I've seen that I have actually been 100% open and honest with. She helped me through several previous existing issues, and gave me great advice for the current situation I was in. She gave me tools that I will be able to use for the rest of my life to deal with stress that don't include medicating myself. That in itself was worth all the money I could ever give her.

Dr. Pace- My chiropractor, my life saver. He has never lost faith in my ability to get better. He encouraged me through my weight loss before the wedding. I was always so excited to report my new results to him! He was there through all of the frustration of my diagnosis process and what I went through at work. Him, his wife, and staff all genuinely care about both Jeremy and I. We love them to pieces and consider them family!

My Mom and Dad- My mother, who also has Fibromyalgia, is the person I call when I want to vent, celebrate, or just get an outside perspective. I don't have to pretend with her. If I feel like crap, I can just tell her I feel like crap, she understands, and vice versa. If I need to get my head straight I can ask her if I'm being crazy or if I'm valid for feeling the way I do. I know she'll be honest with me. She's always told me, "There's nothing you will ever do or see that I haven't already done or seen." As a kid I always just laughed and shrugged it off. I have since learned that it's absolutely, positively true. She seriously knows everything. Dad has always taken such good care of Mom when she would flare. And he did an even more amazing job taking care of me as a child when Mom was feeling really bad. Now that I'm an adult, he has turned into a wonderful friend that I can ask advice from. Or we can just talk about music, movies, video games...he's just a wonderful support role that I know will always be there to love me and help if I need it. I couldn't and wouldn't trade that sense of security for anything in this world. 

Friends- There are so many friends I depend on, and they're all in their own little category. I have the friends who can always make me laugh when I'm frustrated or sad, the friends who I can vent to and no matter how crazy I sound they'll always offer to go beat someone up just to make me laugh and feel better. I have the friends that drag me back to reality when I've gone down the rabbit hole of depression/anxiety and start freaking out about something I have no control over. I've got my Facebook Fibro friends, my Twitter FIbro peeps, and of course my gals of Faith, Hope, and Fibromyalgia. Those ladies have made such a huge impact on my life and I've only known them three weeks. Namely, Joy Peterson, the founder. She checks on me daily via text or email, we pray for each other and pray over our husbands that God will give them the strength, patience, and energy to help take care of us. I've got my friends who live far away and we only talk through Facebook. I can't tell you how amazing it is when I see you guys following my posts here or on Twitter. It seriously means the world to me that you would even be interested in learning about Fibro! THANK YOU! Your support uplifts me daily!

Jeremy- I know you guys are probably sick and tired of hearing me go on and on about my husband and how awesome he is. But you'll just have to get over it :) He's SUPER awesome. He has the patience of a saint, and the tolerance of a wooden statue. Sometimes I don't know how he puts up with me, but I know without a doubt he loves me. This is another sense of security I am thankful for. I know he will be there for me. Always. Love you babe :)

Maggie- This amazing woman is the one I call my Best Friend. I can't help but using that term. We've known each other going on 13yrs. She is the ying to my yang. We're complete opposites but fit so well together. She has inspired me to write and reach out about Fibro, like she has about Crohn's. She has been so encouraging throughout the entire time we've known each other. She stuck with me through all of my crazy boyfriend nonsense in high school and my huge heart breaks in college. She's seen me at my best and most certainly at my worst. Some people mistake us for sisters, and we used to call ourselves The Grace Sisters back in high school. (The most clumsy in real life, yet graceful in dance.) She was the Maid of Honor in my wedding, and one day my kids will call her Aunt Maggie. Even though she's in Chicago and I'm in New Orleans, we still find time to talk and check on each other. This friendship is one that will, with no doubt, last a lifetime. 

It goes without saying that God is on Team Baylee as well. I know I'm exactly where I'm supposed to be in my life. I feel that more right now than I ever have before. 

And there you have it. I hope I haven't left anyone off. There are so many people who I know support me, so please don't be offended if I didn't list you by name. I love and appreciate every single one of you. 

<Who makes up YOUR Support Team?>

30 Things About My Illness You May Not Know

This post was originally supposed to be done during Invisible Illness Week (Sept. 10-16). At that time though I hadn't joined the awesome world of online health networking, so...I kind of missed it. However, I think the concept of this post is really interesting. My awesome Fibro-Sister, Untypically Jia, inspired me with her rawness and honesty. I hope to inspire someone else the same way with my own sincere answers to this exercise.

1. The illness(') I live with is/are:
-Fibromyalgia
-PTSD
-Depression
-Anxiety

2. I was diagnosed with it in the year:
Fibro- 2012
PTSD/Depression/Anxiety- 1999

3. But I had symptoms since:
Fibro- 2008
PTSD/Depression/Anxiety- 1992-1998???

4. The biggest adjustment I’ve had to make is:
Acknowledging my physical limits, and accepting my feelings/emotions are valid. 

5. Most people assume:
I'm just a whiner, I'm lying to get out of doing things, I'm always in a bad mood because my "resting" facial expression apparently looks angry...when really I'm just in pain.
 
6. The hardest part about mornings are:
Waking up and getting out of bed. To this day, my Husband still helps me up.

7. My favorite medical TV show is:
House

8. A gadget I couldn’t live without is:
My phone. It keeps track of everything for me.

9. The hardest part about nights are:
Staying awake long enough to get everything done.

10. Each day I take 11-15 pills & vitamins.

11. Regarding alternative treatments I:
Receive chiropractic care as often as possible (depends on $$$), go to support group meetings, do relaxation breathing, and I do yoga/stretching every once in a while.

12. If I had to choose between an invisible illness or visible I would choose:
Having a visible illness would be easier. But I feel like I've been given an invisible one for a reason...I've learned so much from it and it has made me a better person, in spite of the pain.

13. Regarding working and career:
Thankfully I am still able to work full-time. During my diagnosis process though, it was pretty touch and go for a while. I hope to finish my education in the next few years and continue working at this institution.

14. People would be surprised to know:
Recently my husband and I decided to abstain from alcohol consumption. It's been much harder for me than I thought it would be. I didn't realize how much I was using it to cope.

15. The hardest thing to accept about my new reality has been:
I'm no longer this young little thing that can stay up all hours of the night and go out. I have to be responsible. I have to go to bed at my bed time. Otherwise, I jeopardize my career and my future.

16. Something I never thought I could do with my illness that I did was:
Reach people all over the world. Currently I have reached people in Austrailia, Germany, Malta, and the UK.

17. The commercials about my illness:
Are stupid. Except for the fact that they use the word "Fibromyalgia." They do not portray the illness well to the general public. The one that sticks out the most to me is the lady laying on the red couch while all of her friends and family do activities around her in various locations. While we do feel depressed and like we can't get up sometimes, I feel like we could better educate the general populous about the sensory overload we experience and other illness' that sometimes accompany Fibro.

18. Something I really miss doing since I was diagnosed is:
Dancing

19. It was really hard to have to give up:
My previous job.

20. A new hobby I have taken up since my diagnosis is:
Blogging and community outreach

21. If I could have one day of feeling normal again I would:
Go to Disney World. I'd get there as soon as the gates open and I'd see everything in the park until it closed down without being tired. I'd eat all of the food I'm not supposed to eat. I'd ride the rides that would normal land me in bed for a week from being jolted around. And I'd walk around on my feet all day without my legs, knees, feet, or back hurting. It would be perfect.

22. My illness has taught me:
I've learned to cherish my body. I am now more careful of what I put into my body. I make sure to let my body rest and relax when it needs to. Our nerves can only handle so much. We are our body's manager. If we over-work our body and it under-performs, we are to be held responsible.

23. Want to know a secret? One thing people say that gets under my skin is:
You know I can't just choose one.
-Handi-capable. I appreciate your optimism, but it's actually offensive.
-Just try <insert suggestion here>. It'll fix you right up.
-Does it hurt?
-Just walk it off.
-Oh come on, you're such an old fart. You can stay up later for one night.
24. But I love it when people:
-Consider my health and ask if I'm up to doing a task before they just assume.
-Ask me how I'm feeling.
-Read my blog and give me feedback.

25. My favorite motto, scripture, quote that gets me through tough times is:Revelation 21:4
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

26. When someone is diagnosed I’d like to tell them:
This isn't the end. There is life beyond Fibro, and it's a pretty stinking good life too, if you want it to be.

27. Something that has surprised me about living with an illness is:
I am more in touch with my body and my emotions now than I have ever been.

28. The nicest thing someone did for me when I wasn’t feeling well was:
<Insert anything my Husband has ever done for me.> I have been blessed with an amazing man. He goes out of his way every single day to make my life easier and more convenient. He remembers the things I forget due to Fibro Fog. He is most definitely my better half.

29. I’m involved with Invisible Illness Week because:
Well, I actually missed it. But I'm definitely going to be involved next year!

30. The fact that you read this list makes me feel:
Vulnerable, that you know all of these things....things I normally wouldn't share. Yet, I'm thankful for those who have taken the time to learn about Fibromyalgia. I will never be able to convey how much it means to me for you to care not only about me, but the illness itself.

Body vs Mind: The Civil War

I’ve been thinking about this post for quite some time now but I just couldn’t quite figure out how to word everything I wanted to say. Finally, I decided I’m just going to word-vomit it all down on here, do my best to edit said word-vomit, then post it and hope someone besides me understands what I’m trying to say. So, here goes nothin’…

Body vs Mind is like Fibromyalgia’s own Civil War. What I mean by that is, with all of the different aspects that the Body and Mind disagree on in cases of Fibro (or other chronic illness'), it’s like a bunch of separate battles happening all over that get wrapped up into one big war called Fibromyalgia. Make sense? Probably not, but I’ll try to explain.

Battle #1: My Brain says it hurts, but the medical tests say it shouldn’t.

To reference my last post, Fibromyalgia is invisible. When you first go to the doctor and start describing your pain, they’re going to run every test in the book. They’ll be looking for cartilage damage, tendon and ligament damage, auto-immune diseases, vitamin deficiencies, red/white blood cell count, cholesterol, kidney function, liver function…ok you get the point. If you have Fibromyalgia (and not any other prominent issue), all of those tests are going to come back negative/non-conclusive. They will find NOTHING. What will make the biggest difference in your life though is if your doctor has the brains to tell you, “It’s OK,” and that the negative test results are all part of the diagnosis process. You ARE NOT crazy. The pain is REAL. It’s just that all of the initial tests don’t go looking into your Central Nervous System. Even if it did, it’s not like your CNS is holding up a big red flag that says “Oh hey! I know the answer!” The CNS, being the complicated system that it is, does not tend to offer up much in ways of answers when it comes to Fibro, yet. Doctors are still researching to find definitive answers for us, and I have faith that they will.

Battle #2: My Brain thinks I can, but my Body says otherwise.

Sure! Your brain says it would be a great idea to go out clubbing with the girls until 4am. But your body is going to cruelly make you pay for it tomorrow (and probably for the following week.) This battle is one we Fibromites start fighting before we even get diagnosed. It’s the first official “Sneak Attack.” Once being diagnosed, you will gain extra tools in your belt to understand the “enemy.” If you choose to use the tools, you CAN win this particular battle and the enemy (your body) can slowly start becoming your friend once again. It all comes down to Acceptance. If you can accept that your Body is changing (whether you like it or not) and that your mindset must change with it, this battle goes down in your History as being a turning point in the long war that is Fibromyalgia. By listening to your body, you may feel like you are surrendering to it; and in a way you are. But by doing so you will gain the upper-hand and become triumphant once more!

Battle #3: I know I should listen to my doctor and exercise, but my body tells me, “No way, Jose!”

This is a battle I still fight each and every day. Even in my younger years, I associated exercise with pain. It was just a little more bearable back then since I loved marching band and teaching dance was one of my jobs. By now I’m sure you know there is currently no cure for Fibromyalgia, you should also know that there are very few remedies researchers have found that work. One remedy that has proven to work time and time again is exercise. I know; how in the heck should Fibromites be expected to exercise when we are fatigued and hurt all over? Well, here’s how: In terms of Fibro, exercise takes on a new definition with each Fibromite. Just like each person’s pain is different, the amount of activity that can be done differs with each individual. Once again, IT’S OK. This is another one I’ve had a hard time coming to terms with. Just because I used to be able to leap in the air and do the splits, doesn’t mean that in order to exercise I have to throw myself back into an Advanced Ballet class. (Trust me, I tried. It was kind of tragic. Follow the link if you want a good laugh, though.)

I understand that in Battle #2 I told you to listen to your body. Now it’s going to seem like I’m contradicting that very statement. I’m not, though; just consider this a grey area. In the times you feel like you just can’t move, the BEST thing you can do for yourself is to move (in most cases.) Your worst enemies in this battle are both your Mind AND Body. How? By being in pain, your Body is going to discourage you from feeling like you can do one of the two things researchers have found helps everyone with Fibro: EXERCISE!!! I’m not talking about running a marathon or lifting weights. If you know me at all, I have proclaimed running is against my religion since the 7th grade.

I have learned from my support group meetings that some of us walk with canes, some have to wear back and leg braces, and some of us have other illness’ that accompany our Fibro. But when we do our movement exercises as a group, everyone can participate. We do some of our stretching while sitting in chairs, some standing up, and some sitting on the floor. Just doing a small amount of movement allows blood to flow through our achy muscles and tired joints. It is the movement and energy flowing through our body that allows us to flush the pain/toxins out of the nerves. What happens when we get tired and we’re hurting? We lie down or sit down, often for long periods of time. Don’t get me wrong, I know resting is a huge part of feeling better; but if we only rest and never move, the energy and toxins in our nerves/muscles have nowhere to go. Instead, they stay put and muster, resulting in even more pain.

Battle #4: Mind over Matter

I can confidently say this is a touchy phrase for all of us. At some point in time, I'm sure some idiot, (pardon my honesty), has said to you, "You can control the pain. It's just mind over matter!"...or something along those lines. And as we all know, if we could simply will the pain away, we would have a LONG time ago. While we don't have control over the fact we have been given this chronic illness burden to bear, we do have control over some of the things that make our pain worse. I feel that its extremely important for any person with a chronic illness to take responsibility over the things they can control. We are our own advocates when it comes to our health, and when the effort is put forth, there are ways to make our quality of life the best it can be in spite of chronic illness. It is OUR responsibility to do that though. Not our doctors, not our caregivers, spouses, not even the medication. While we would love to depend 100% on all of those people/things, the only thing we can truly depend on is ourselves. No one will ever know our bodies like we do. If we listen close enough, our bodies tell us exactly what we need. However, until we've accepted our new friend Fibro, for better or worse, we won't be in the right head space to be able to utilize all of the tools and hints our body gives us to make our lives better. We most work with the universe, not against it. 

In my own personal struggle with Fibromyalgia, I have triumphed over Battles #1 and #2 (for the most part). My biggest struggle remains Battle #3. To this day, I have the hardest time finding the motivation to get up off my bum and stretch or just simply move around. The fact that I am able to do so little compared to what I used to be able to do often discourages me. I feel like the little bit I am able to do is insignificant. THIS IS WRONG. I am wrong. (Go ahead and mark it down in your calendars folks.) The truth of the matter is, when it comes to Fibromyalgia, every little thing helps. I feel like Battle #4 is a daily battle for me. Some days I want to lie down and blame the whole world. But on my good days, I get up, take responsibility for myself, and I fight like hell.

<No matter which battle you're currently in, please feel free to reach out to me for support. If you’re discouraged about movement/stretching/exercise or if you're interested in learning relaxation techniques, I would be happy to make recommendations that are simple based on what you are able to do!>