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!

Road Trippin'

Greetings from Houston!  We are here visiting my husband's family and having a great time!  Unfortunately, you don't get to leave your chronic illness at home.  And traveling with food sensitivities can be a pain in the butt.  Avoiding dairy and gluten on the road is tricky and leads to a grumpy, hungry me.  Sorry, family!  Anyway, here is my travelog:

Day 1: We have awakened at 4:15am.  IN.THE.MORNING. We are hoping that the boys, Big Red and Monkey Boy, will go back to sleep in the car.  The plan is to pull out of the driveway by 5am.  We are pulling out of the driveway at 5:30.  I am driving first shift.  Have my coffee and waffles and I should be good to go.

Hour 1: Crap.  I'm already getting sleepy.  But I'm the only one.  Big Red and Monkey Boy are full of vigor and excitement.  Oh, and we need Dramamine--that will help put the boys to sleep, right?

Hour 2: zzzzzzzzzz (don't worry, I'm not driving.)

Hour 3: Breakfast stop and I'm back behind the wheel.  The boys are doing well but still haven't slept.  Why aren't they sleeping?

Hour 5: Still driving and the boys are still awake.  Obi John has napped briefly.  I'm chugging Mexican Coke and popping Air Heads Bites. 

Hour 8: Lunch.  I'm stiffening up pretty badly at this point.  Getting out of the van is harder at every stop.  I've run the seat heater a few times to help loosen muscles. Monkey Boy is looking sleepy.  Big Red is going strong. Nap time for me and my seatpet while Obi John takes the wheel.

Hour 10: How many more states do we have to cross?  I'm getting cranky because I'm hungry and don't have snacks.  Monkey boy took a little nap but Obi John and Big Red are starting to show fatigue without sleep. 

Hour 12: Louisiana.  I spotted a sign for boudin and curried favor with Obi John by stopping.  Boys are getting a little wild, I am getting stiffer and crankier. 

Hour 5,990: Okay, it's only hour 15.  We are so close!  Big Red finally lost his stuffing and I had to make good on the "don't make me stop this car" threat.  He went to sleep soon after.  My joints are aching and my eyes are gritty.  Our final pit stop had us at a fancy gas station.  You know what doesn't belong hanging over the toilet in a restroom stall? Large, framed family photos.  It's hard to pee with someone's goofy son-in-law grinning at you.

In the home stretch...and BAM.  GPS took us on a toll road that is for pass holders only so we had to get off.  Took us an extra 30 minutes to get to the house after finally finding a way around the toll road of exclusivity.

Arrival: Joyous.  Big Red kisses the driveway and I am close to tears.  Hugs and dinner...and advil for me.  God bless my sister-in-law, who broke out the wine.

Day 2: We are on our own for most of the day, so after sleeping in we head to the Houston Museum of Natural Science, on of Obi John's favorite places.  Before even making it to the ticket window the fire alarm starts going off and the museum is evacuated.  Thankfully, our wait in the heat is short and in we go.  Big Red has expressed desire to ride a mechanical bull while in the Lonestar State.  Instead we spot a Broncosaurus in the museum lobby and both boys get a ride.  The museum is absoluting amazing!  But it is also huge--3 floors of fantastic exhibits.  We spent the most time touring the evolution of life on earth and craning our necks to look at dinosaurs.  Floor 2 is a jaunt through rocks and gems.  By floor 3 the boys are wiped out, Obi John is hungry (he's already eaten my emergency Larabar), and I'm fighting the back pain and fatigue that I'm feeling.  I really want to see the Ancient Egypt exhibit so we whizz through it and then head for the van to relieve our tired feet.  By the time we get back to the house I am about to collapse but I'm not letting it show.  I don't want to impede our visit so I suffer silently.  We go to dinner and grab some frozen yogurt while walking an outdoor mall area (no more walking!).  A great day but it took it's toll. 

Day 3: Hanging at the pool.  I have slathered myself in layers of sunscreen so as not to fry in the hot Texas sun.  Monkey Boy and Big Red brave the diving boards and the warm water feels good on my aching body.  2 hours of fun in the sun and no sunburn--that's what I call success.  We have dinner at a dine-in movie theater and see Pixels.  The nerd humor is enjoyed by all.  My fatigue is getting rough, though.  My achiness is increasing, too.

Day 4: While trying to decide what to do on our last day SIL suggests walking around the big, fancy mall.  I nicely decline as my body is screaming in agony at the very thought.  We settle for a trip to the aquarium.  Other than being very hot and very humid, we have a great time.  I'm hanging in there but my allodynia (skin pain) has become excruciating and leaning against the seat on the shark train is barely bearable.  I have an extra glass of wine at dinner to dull the roar.  We will be rising pre-dawn for the trip home.

Day 5: We head home after a fun stop at the second-largest gas station in the world, Bucc-ees in Baytown.  After ogling the massive merchant and picking up snacks (including some extra bags of "Beaver Nuggets" for friends at home) we get on the road.  Everyone sleeps more this time.  15 and 1/2 hours later we drag our bodies into our house.  Thankfully, I am off the next day to recouperate.  I pushed myself over my limits and I know I will have increased pain and fatigue for several days.  Was it worth it?  YES.

My mother-in-law also struggles with fibro so Obi John's family is aware and understanding of what I go through.  I probably should have leaned on that and 't taken it easier on myself.  It's hard to do that, though; I hate to feel like an inconvenience, especially as a guest in someone else's home.  It takes a lot of trust and willingness to let someone else see our struggle.  I think we, as fibroMIGHTS, tend to hide  rather than share.  So many people don't understand and we take the negative reactions to heart.  That makes it harder to let others know that we need to take it easy.  Well, that and it's hard to miss out on fun! 

Mama said there'd be days like this

I try to keep this blog positive and light but I've been in a flare lately and I think it's important to let you see the other side, too.  The disclaimer is that I am not wallowing.  I do this in the interest of being open and transparent.  None of us is happy and upbeat all of the time.  I have not felt fibro-MIGHTY lately, I have felt fibro-MUSHY.  I have been fatigued and depressed.  I have been scared.  And I scared my husband a week ago.

I work a retail job and we had a massive sale for all of  Thanksgiving week.  I worked a lot of extra hours that week and spent most of that on my feet running the cash register, which involved keeping my arms elevated.  This led to muscle pain and joint aches in my neck and shoulders.  I overworked myself and then got scary family news in the middle of my exhaustion.  I worked extra hours the following week, as well, and I was having trouble sleeping due to pain and emotional distress, which of course led to greater pain and distress.

I have always been called a strong person and have always had others look to me for emotional support.  Over the years I took this to mean that I am not entitled to my own problems or to being vulnerable.  I have felt like I have to be a rock, be superwoman, be the groundpole to those around me with unwavering strength.  Sometimes knowing that has been encouraging, but not lately.  I didn't want to burden my husband with my fears and sadness.  I didn't feel like I had anyone I could share my pain with.  I felt alone.  And I broke.  Everyone has a limit.  Mine was a long time coming but when I hit it, the results were nearly catastrophic. 

I'm not ready for full disclosure yet.  What I will say is that I went to a bad place and it terrified me and Obi-John.  I have put off weaning off of my anti-depressant for the foreseeable future.  I need the extra help right now.  I need to find a professional to speak to.  I was scolded by the hubby for not being forthcoming with him.  He pointed out that he is my rock just as I am his.  I found friends who I was able to be open with and who straightened me out on a few things.  I am coming to terms with the fact that strong doesn't mean invincible or invulnerable.  I have promised to be open with my feelings and allow others to be strong when I feel weak.  I have promised to quit bottling things up for fear of being a burden.  Apparently, that's what spouses are for--something about vows and whatnot.  ;)

Today was a great day.  I took time for me.  I slept in, got a deluxe pedicure, and played games on my computer.  I took joy in my sons when they got home from school.  I am full of holiday cheer.  Tomorrow might be another rough day but I know that I have others to lean on, and that it's okay to do so.  I think what I've learned most of all is that sometimes part of being strong is knowing when it's okay to be weak.  As one friend explained, I can't support my family if I'm running on empty.  I am grateful for my support network.