'Cause I got to have faith, faith, faith

My family started going back to church a few months ago and part of the sermon this past Sunday struck a chord with me.  It occurred to me that a lot of my positive outlook with my fibro comes from my faith.  From faith come hope and acceptance.  I don't believe that my faith will cure my pain but it does give me the strength to cope and thrive in spite of it. 

I believe in God and I believe in prayer.  I pray that doctors and researchers use their God-given talents to find a root and a cure for fibro.  I pray for strength and I pray for relief.  I may not get my answer in the form of immediate absence of pain but what I get is a calmness of soul and the peace that comes with that.  I try not to spend time wondering "Why me?"  or feeling like God has punished me.  Bad things happen and the important part of life is how you deal with them.  I know, easier said than done.  For whatever reason I've never tended to blame God for bad things.  I don't know why they happen but I know God is there to help us through them.  Losing faith means losing hope, and that means losing the means to deal with the pain.

Going to church has become it's own form of therapy for me, I've found.  I was hesitant about returning to church for a number of years because I thought getting the boys (children and husband) ready and out the door would be nothing but more stress to deal with.  I felt like family time at home was better.  I was wrong.  My kids don't always jump for joy when it's time to get dressed for church but Big Red says he enjoys going and helps encourage his little brother.  When we get there and get settled into a pew it becomes family time.  There we sit, side by side, surrounded by the warmth and love of God and the congregation around us.  Nothing needs to be done for that hour.  We listen, we sing, and we fellowship.  Then we go out for lunch and enjoy each other's company.  And so the first part of every Sunday is spent being together and being still.  It is relaxing and recharging.  I wish we hadn't waited so long to return (Obi-John and I met in church years ago). 

I may not agree with everything that is said; I may not enjoy every hymn.  But I feel God at church and I can carry that feeling with me more easily elsewhere.  I know without a doubt that if I didn't believe in God and I didn't have faith that I would be miserable in my illness and hopeless in my pain.  I don't know where I would find the strength to seek and create happiness for myself and my family.  I would feel defeated.  So take this all for what it's worth--I have discovered that this is the ultimate secret to my positive outlook and determination to be happy.  Gentle hugs, FibroMIGHTS!

Fun with my Fitbit

Well, I found a great deal on a Fitbit Charge HR and jumped on it.  I've been wearing it for a couple of weeks now and I have to say that I'm impressed.  This is a fitness system I can do.  I'm not pushing myself to diet or build a workout regimen, I'm merely tracking what I am doing and building from there.  The biggest thing that I have learned is that 10,000 is a lot of steps!  I have always thought myself fairly active but now I see how things really are.  The big thing that I  promised myself is that I won't worry about pushing myself on rest days.  I accept whatever number of steps I get to.  On my good days, I push to my goal, even if it means walking laps in my living room for those last 500 steps. 

The other features of it are important for me, too.  I have found it interesting to monitor my heart rate and see how stress affects it.  Getting a running tally of calories burned is pretty neat.  It's encouraging to wake up and see 500 calories already burned!  I'm not counting calories in what I eat but being aware of what I burn makes me aware of my food choices.  Perhaps the best feature is the sleep tracking.  I already knew that my sleep was probably crappy since my rheumy told me at the first appointment that sleep issues and fibro are intertwined.  I know that 7 hours is my minimum for sleep.  I haven't been hitting that much lately and my chronic fatigue has been rough.  I am hoping to start tracking a pattern in my sleep cycles and restlessness to see if I can find clues to lead me to better sleep.  I don't want to rely on pills for it, though.  It will be a process and I have some ideas, though I know some of them will be tough.  My bedtime routine needs work.  I am hoping to see improvement in my daily well-being. 

My next step is to get some Fitbit buddies to work alongside and share ideas with.  The goal is a healthier lifestyle instead of quick and drastic body changes.  I figure if I'm getting better sleep, making better food choices, and staying active that the rest will fall into place.  I'm looking forward to a happy and healthy 2016.

Flight of the Fibrofly

It's been awhile since I've done a 5K because my walking partner (of the team Wobbly Walkers) moved out of state.  I couldn't resist the opportunity to join in with another friend to do a Halloween-themed event this past Sunday.  Why do I tempt fate, fatigue, and fibro by walking over 3 miles for no apparent purpose?  Because it's like giving fibro a big middle finger.  It's a way of saying, "my life isn't over and I'm not going to take this sitting down."  I always feel great after walking--all those endorphins and happy chemicals flowing through my system.  Then I get hit with the need for a nap and sore muscles for a couple of days.  I take pride in those sore muscles, though--I EARNED them.  It's nice to have a reason for the pain sometimes.  And this time I got a cool medal!

Like I said, the theme for this 5K was Halloween and costumes were encouraged.  Whatever would I be?  Then it hit me--a Fibrofly!  Since the symbol for fibro awareness is a purple ribbon with a butterfly I decided to promote awareness by dressing as a purple butterfly.  Follow my walk below:

Ready to walk!

And we're off!

Hard to tell, but this was quite a hill.

Salsa music has me in the groove!

Halfway point!

Still going strong--I'm warmed up good now.

Hahahaha, just kidding!  This was for the half-marathon folks.

Finish line!

Showing off my spiffy medal and my sexy fanny pack.

I met some awesome mermaids during the walk and the friend I went with (who is a runner) won 1st place in her age bracket!  The weather started me off in pain and weakness but I prevailed and the rain held off.  I went home, washed the purple off, and took a nap.  My calves and ankles were sore for a few days. I can't wait to do another and now I'm even looking into a 10K to really push my limits!  That will take some training but the thought of making it through is too exciting to shy away from.  Gentle hugs!

Sharing is Caring

Y'all have seen me step outside of my comfort zone so now I'm going to ask you to step out of yours.  I know a lot of people with chronic pain who keep it a secret.  They are afraid to be open about it because of the negative response they have received or the negative response that they are afraid they will receive.  Unfortunately, there are a lot of people out there who are ignorant about hidden illnesses.  And then you have the jerks who just plain refuse to believe in them--as though I've said I'm the Easter Bunny instead of having fibro.  To them I give a giant raspberry.  But that's not my focus here.

My challenge to you as a FibroMIGHT or other chronic pain warrior is to take an opportunity to let someone random know about your pain.  Maybe you get to chatting with someone in line somewhere or meet someone new at bunco.  I'm not saying to blurt it out awkwardly, but to include it if the conversation warrants.  I have had several amazing experiences with people lately because I was open about my pain.  I got the chance to enlighten a few non-pain people to the world of hidden illness and the support and encouragement that I received in return was like a big hug.  And then there's the other thing that happened...I found other pain warriors and we shared our stories.  (Cue the sappy music.)  I met a woman with RA last weekend who had some great info that has already made a difference for me!  She suggested upping my magnesium dosing to help with my anxiety and depression.  I had no clue that it was good for that so I doubled my dose and I am now only taking half a dose of my antidepressant, with the intention of weaning off of it entirely.  I would not have found this path without that lovely woman. 

I know you've been burned before.  I know you've endured nasty looks and snide comments.  All I'm asking is that you try it once over the next week.  Be open and see what happens.  I'm not going to promise miracles.  I am only saying to give it a try and hope for the best.  You never know when you'll meet someone whose words of support or personal insight will make a difference for you.  You might even end up being the one who makes a difference for someone.  Maybe you run into someone who is trying to support a newly-diagnosed loved one and struggling.  Maybe hearing your advice/experience/struggle is the connection that someone needs to know he or she is not alone, or that there's always a bit of sunshine in the rain. 

I don't know if you've noticed, but fibro doesn't pop up on the news often or show up as a plot line in tv shows.  Fibro is still lurking in the shadows and fighting long-held stigmas.  It is not "a woman thing" or "all in my head" or "a catch-all diagnosis."  The origins and cause may still be unknown but the best way to learn about something is to ask questions and to share information.  I've made it my mission to help spread understanding about my illness/disease/whatever the heck they're calling it this week.  Will you join me?

Targeting My Struggles (See what I did there? Huh? Huh?)

I did this video over a week ago but lacked the technological know-how to transfer and upload it until now.  This was a very symbolic event for me and I felt lighter and freer afterward.  My sore muscles and mild bruising were simply reminders that I can overcome my pain, guilt, and fear.  My family and friends are there to help.  Gentle hugs, friends!

Can I get partial credit?

Warning: adult themes ahead.  It's about to get really real.

I am going way out of my comfort zone today--let's talk about sex.  But not in a fun, Salt-n-Pepa kind of way.  This can be a very difficult subject for FibroMIGHTs.  It can be a very frustrating subject for the significant others of FibroMIGHTs.  I don't think anyone can deny that sex and intimacy are a big deal in long-term, committed relationships.  Not having that physical connection, or having it disrupted, can be hard on both parties.  This is not a fun argument, especially on top of everything else a FM deals with.

I met my husband pre-fibro.  We dated and married in our early twenties and our love life was what you would expect from such parties.  Now we are in our mid-thirties and have kids and jobs with long hours.  And my fibro.  So we not only battle the doldrums that come from being not-young, working long hours, and raising 2 energetic boys, but also the pain and chronic fatigue that I have.  My husband has been extremely gracious about things, he really has.  I'm sure he feels more frustration than he voices, though.  And I get frustrated, too!  Luckily for us, my fatigue and his work exhaustion often coincide and the two of us offer each other partial credit--we express our mutual desire to have sex while declaring inability to engage.  It's silly.  But keeping it out there in the open helps us avoid resentment build-up from secretly wondering if the other is upset.  I think we both feel better knowing that the desire is there even if the energy is not.

If you are the significant other of a FM (or any other chronic pain/fatigue sufferer) know this: we WANT to have sex.  Or at least WANT to WANT to have sex. We haven't sworn a vow of celibacy, I promise.  It's just that falling asleep during the act is a definite possibility.  Or the thought of finding a position that won't trigger pain is too daunting.  We still find you attractive.  We still want to be adventurous.  It's just that back and joint pain aren't terribly sexy.  Until someone comes up with the Fibro Sutra you just have to go easy on us.  Okay?

And don't forget that FibroMIGHTS experience greater than normal pain after exercise.  Sex counts.  There has been many a time that I showed up at work limping or clearly in obvious pain and had to field questions about what happened to me.  "Uhhhhh...I slept funny last night."  Oh yeah, fun every time.  Is the awkwardness worth it?  You betcha!  You just have to understand that these are extra things we FMs have to deal with.  Along with guilt over not being ready to go every time you are.  It's hard to be intimate when you don't even want to be touched.  Patience and understanding are essential on both sides, my friends.  Please give yourself or your other a break--and maybe even be willing to give partial credit for even voicing the desire when the flesh is weak. 

Phases of Fibro...it's a circle

Like so many things, the emotions and feelings of fibro come in phases, like the pain itself.  Unlike some processes, though, the Phases of Fibro do not end at Acceptance.  They are not linear.  They come and go in an endless circle.  Some days are good and some are bad in the quagmire that is fibro.  You can go for months feeling great and confident and like nothing can keep you down.  And then you get hit with a bad day--the kind of day that makes you feel like giving up.  For me, understanding a problem makes it easier for me to cope.  So here is my list of the Phases of Fibro:

Frustration, Part 1: this is the one that comes before your diagnosis.  It is the frustration of not knowing why you hurt and are tired all the time.  Mixed in with this version of frustration is Worry.  Worry that you have something terminal or that you'll never have an answer.  And it's the frustration of knowing that you hurt for a reason that no doctor has an answer for.  All your tests are normal but you are clearly not okay.

Panic: this one hits right after diagnosis.  It's the "How am I going to live like this for the rest of my life?"  It's panic over the thought that you will never have a normal life or the life you planned for.  It's panic over how bad things are going to get.  It's panic over how your loved ones and friends will feel about you having a debilitating illness.

Depression: "How can I live like this?  How can anyone love me or want to be with me? I'm worthless; I can't do my part and I'm letting everyone down."  This one's a bitch.  This phase leads to deep, dark places that are difficult to crawl out of.  This phase is the most debilitating--moreso than the fibro itself.  It's the hardest to fight and the worst to watch from the outside.  It hits when you least expect it. 

Guilt: the evil stepsister of Depression.  You feel guilty about turning down fun things or time with others.  You feel guilty about being tired all the time and not getting enough done.  It's irrational but no less real.

Anger: "This sucks! I hate being limited.  I hate this pain." This phase can be productive as long as you don't let it consume you.  Use the anger for good and to push through other phases.  Don't let it make you bitter or angry toward other people. 

Frustration, Part 2: "I hate not being able to do all the things I used to do."  This is the phase that can get you into trouble when you think you can take on more than you really should.  It gets tied up with anger and depression, and can sometimes result from Determination.  Or it can result from knowing in advance when you are going to face extra pain.  Like when the weather forecast shows a week of rainy weather and that's one of your triggers.

Determination: usually comes after Anger.  "I won't let this stop me from living a full life!  I'm going to find ways to beat the pain!"  This is a great phase!  I live here a lot.  It's the phase that prompted me to start this blog and to keep it up.  "This is my fight song; take back my life song..."  You can sing the rest.

Acceptance: a very good place to be as long as you maintain it with an edge of determination.  "I can deal with this.  I have to make allowances but I can live with this.  I have found coping mechanisms and I'll keep looking for more."  This is the zen phase.  It doesn't mean you like what you're facing but that you are coping well.  It can be tinted with either hope or despair, unfortunately.  You have to keep the scale tilted toward hope. 

Today I have struggled with Guilt, Frustration, Acceptance, and Determination.  I'm not sure which one is winning right now--I'm tired, didn't do as much as I had planned, I can see the rainy weather coming, and I wouldn't let myself skip writing this post.  Gentle hugs!