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. 

I hurt but I'm happy, I'm in pain but I hope

Good morning, FIbroMIGHTS!  I've been in a lot of pain for several days now but I really want to post something upbeat.  Today is my day off this week and I'm almost giddy with excitement over having hours of freedom to do as I please!  I have dropped the boys off at summer camp and I have 5 hours to play with.  It's a day for me.  This is something I need to stay feeling good, both physically and mentally.  Everyone needs time to rest and recuperate, not just FibroMIGHTS.  We just need a little more of it.  Stress can be a major trigger for pain and depression.  Today I have things to get done but I'm going about it in a way that allows me to relax instead of feeling rushed and pressured.  Feelings of guilt are trying to creep in but I am squashing them as they come. My husband left for work this morning with orders for me to take it easy today. 

We are leaving for a road trip next week (which is going to wreak havoc on me physically, so I am resting while I can!) so I went straight to the tire place after dropping off my little ninjas.  If you prepare, waiting for a tire rotation can be calm and restful.  A mug of coffee and my tablet had me ready to go.  I used to absolutely despise having to sit and wait for things but I have learned to accept forced wait times as a blessing.  I always have a book or something to occupy myself so I don't get bored and I look at the wait as rest time that I might get otherwise.  Nothing can be expected of me if I'm stuck somewhere waiting on a service, after all.  It's all in your perspective.

Next, I headed to the nail salon for some pampering.  The guilt monster peeked around the corner at me and mouthed, "why are you spending money?" but I told him to take a hike.  My husband even condoned getting my acrylic redone since it helps to keep me from scratching my eczema patches raw.  And being on my feet at work for 10 hours a day certainly earns me a pedicure.  The pretty toenail design and eyebrow wax were my splurge.  I work hard and I deserve a treat now and then.  I had 2 people working on me for about an hour--an hour of bliss and being tended to instead of tending to others.  That kind of thing is rare in a mommy's world.  I left the salon with Tiffany Blue nail tips and jewel-accented toes...and a healthy dose of well-being. 

So now I have 3 more hours before retrieving the ninjas from karate camp.  Isn't it funny how you forget how to waste time when you're used to being busy all the time?  I'm hanging out at Panera to work on this post and do some other computer-related tasks.  I've never done the Panera hang-out before and I have to say it's pretty nice.  Soothing atmosphere, free wifi, and good eats.  However, I am fighting the urge to find errands that would inevitably have me rushing around to completion before camp is over.  That would be stressful so I must resist.  Must force relaxation and rest!  The guilt monster is telling me that I'm being unproductive.  Shut up, guilt monster!  I don't need your crap!  This is what I need right now, this pause.  This time to myself will make things better for a few days or so.  It will enable me to recoup some spoons.

Overall, I feel really good today.  I am in some pain, as always, but I am in really high spirits and feel very bright and vibrant.  This is the benefit of down time. FibroMIGHTS have to have this chance to relax without guilt or question.  This is the time that allows us to feel like we can continue on with our condition.  That we can continue to fight against the pain and have good things in our lives.  Too often we can fall prey to depression from the chronic nature of our suffering.  It is essential that we find these times for ourselves!  A positive outlook and glimmer of hope is what keeps us going. Wallowing must be limited but pausing is necessary.  I can be happy, but I have to choose it.  And I have hope that more will be learned about fibro and better options will appear for us.  Until then, smile through the pain, laugh as much as you can, and know that there are always bright spots amid the storm.  Gentle hugs!

Brain Cells in the Mist

It creeps in when you're not watching.  It makes you forget what you came into this room for.  It makes it impossible to do math in your head.  It's...Fibro Fog!        (Cue horror movie scream.)

Today's forecast is cloudy concentration and patchy attention span.  We're hoping for clear brain skies tomorrow.

I'm sure there's some sort of medical term for it but we FibroMIGHTS call it Fibro Fog and it sucks.  It's the symptom that makes us look like total space cadets or incoherent idiots.  FF is pretty much exactly like it sounds; our brains feel foggy, misted over with confusion.  We can be easily distracted and very forgetful.  It's the symptom that is making it hard for me to write this post right now!  Everything around me is grabbing my attention and I'm finding it difficult to focus on typing and coming up with words.  I also have a stiff back and a crick in my neck, which only adds to the distraction factor.

I don't know what causes FF but there's no denying it.  I actually felt very relieved when I found out that it's a normal fibro symptom.  I was honestly a little worried about myself when the fog began.  Having a total lack of concentration and difficulty remembering basic vocabulary can be disconcerting.  There were times when I would walk into a room to talk to a staff member, forget entirely my reason for being there, give up, and walk away.  My husband finds it irritating when I space out during a conversation or lose my train of thought mid-sentence.  I really can't help it but that doesn't make it less frustrating.

Sometimes the results of my FF can be hilarious...for others.  A verbal pause in the middle of a sentence that entirely changes its meaning, for example.  Merciless coworkers are still teasing me about one such slip.  I find, once again, that a sense of humor is the only way to deal with it.  Being able to laugh at myself makes it easier to cope, for the most part.  Sometimes the fog is so thick I just want to give up on the day and hide in my room with a book, which I may or may not be able to read at that point.  Those down times are okay, as long as I don't let myself wallow in them.  FF comes and goes so I try to go with the flow and do the best I can given the circumstances of each day.

Gentle hugs, FibroMIGHTS!

In the words of Lili Von Shtupp, "I'm tired!"

Let's talk about fatigue.

Not tiredness, not sleepiness, not exhaustion.  Fatigue is often my most problematic symptom.  I don't hurt badly all of the time and minor pain is something I can ignore and work around.  Fatigue eats away at me; it affects my mood, my work, my schedule, and my pain.  I ly endless font of energy.  I barely understood the concept of being tired and certainly didn't understand fatigue.  I was an insomniac and a morning person rolled into one.  People declared me "the most energetic person I've ever met" on many occasions.  Even now people are amazed by my energy on my good days.  I think that makes the bad days feel even worse.  I know what I've been accustomed to and I miss it. 

Fatigue is difficult to describe to those who don't experience it.  It builds up over time and is often unshakeable.  Today has been a Fatigue Day for me.  I slept from about 10:30pm to 9:20am.  That's almost 11 hours of sleep and I still struggled to drag myself out of bed.  I needed to work around the house but couldn't do it.  My body feels weighted down and the very act of expanding my lungs to breathe takes more energy than usual.  My eyelids are heavy and my eyes feel gritty.  I wanted to take a nap but forced myself to stay awake.  That's not always something I can do.  There are times when my body physically shuts me down.  I get to the point that I'm not only physically exhausted but so drowsy that I can't function.  If I try to push through at that point I feel sick to my stomach and close to tears.  If I don't lay down and sleep I will collapse.  My husband and kids are used to it by now and they know not to question it when I tell them I have to take a nap. 

So, what can I do about it?  Unfortunately, not a whole lot.  Some factors can be controlled but others can't.  Summer heat sucks away energy in non-sufferers so you can imagine what it does to those of us with chronic fatigue.  Working out or physical labor can create days of increased fatigue.  Lack of sleep is an obvious factor and it is somewhat controllable.  My rheumatologist told me at the very beginning of my fibro journey that some doctors speculate that fibro is caused by sleep issues.  I find it hard to believe that that is the entire cause but sleep issues definitely play a factor.  Inadequate deep sleep prevents cells from repairing and regenerating, which leads to pain.  My rheumy stressed the importance of good sleep habits.  He told me that I require a minimum of 7 hours of sleep each night.  I can tell you that my pain improved vastly when I started an earlier bedtime.  And my fatigue is more manageable with a regular sleep schedule, too.  I also have to make sure to balance my schedule and allow a day of rest each week.  Today is my day for this week.  I spent quality time on the couch with my boys and in front of my computer.  The Spoons I saved today will be useful tomorrow.

The only other thing I've found that helps is OrganoGold Coffee.  I don't sell the stuff, so I promise I 

am not trying to sell anything here. I have self-tested the product and it is my savior!  I usually make a smoothie with the Latte, almond milk, chocolate syrup, a banana, and a handful of strawberries.  It's a perfect start to the day.  OG has a fraction of the caffeine of normal coffee, which I can't drink; I end up bouncing around like a pinball for 45 minutes and then crash with a migraine for the rest of the day.  The OG is full of B vitamins and stuff that puts me in a great mood and gives me the energy to get through a whole day.  People around me can tell when I haven't had my OG.  My smoothie is "morning person" in a cup.  

*Yawn* Well, I've used up my blog-writing energy and have to get the boys home from karate and home for dinner, which my awesome father-in-law is cooking tonight.  Gentle hugs!

I had to pop back on to add something.  People with chronic fatigue are NOT lazy.  That can't be forgotten.  It's not that we're shirking our duties or avoiding work.  We sometimes CAN'T do something, even if it's something we really want to do.  Our bodies often dictate what we do or don't have the Spoons for.  If we push too hard we only make the fatigue and other symptoms worse. I am a very hard worker but I also have to know my limits.

Twinkle, twinkle random pain...

I want to talk about the fibro symptom that makes me laugh, despite the fact that it is painful.  I don't know if it has a real name or not but I call it "Twinkle Pain."  I have created the visual below to help you understand.

Twinkle, twinkle random twinge,

Like a troll bent on revenge.

Stabbing here and spasms there,

Twinkle pain is everywhere.

     The gist of it is that I periodically have pains that jump around.   If you think of my body like a christmas tree with a strand of lights wrapped around it, the pains pop up and die away much like the twinkling of a strand of colored lights.  Sometimes the pain flashes quickly and sometimes it pulses slowly.  It can be a sharp pain, a dull ache, a twinge, or a muscle spasm.  Sometimes I twinkle for only a few minutes and other times it is on and off for a couple of hours, or even all day.  I can be having a great Lavender day (remember that lavender, mulberry, amethyst scale?) when it suddenly seems like someone switched on the twinkle lights. 

    So what about this pain makes me laugh, you may be wondering?  Well, it is the total randomness of it--I never know what's going to hurt.  I've had pain in places that I didn't even know I had or thought could hurt.  And sometimes the pain is in a place that I can't really mention to an outsider.  The pain can hit me unawares and I utter a cry or an "ow" and then whomever I am with asks if I am okay.  Not everyone would understand, "Oh, it's just a sudden, stabbing pain in my right buttock" or "There's a painful twitch near my left nipple."  It's the kind of thing that makes having a good sense of humor essential.  My former staff would laugh along with me some days; they would see me limping down the hall with leg pain one time and later in the day find me hunched over with upper back pain.  When the pain is quick I can have a throb in my left big toe, a stab in my lower back, a twitch in my right eye, and aching in my pelvis all within 5 minutes.  For the most part it's annoying more than anything.  Not that the pain itself is anything to laugh at--feeling like you're being assaulted by a horde of gremlins armed with spears and arrows is certainly no picnic.

      From speaking with friends with other chronic pain conditions, I get the impression that Twinkle Pain is fibro-specific.  A good friend of mine who has MS tells me that her pain is almost always in the same area and is fairly predictable.  One of the indicators of a fibro diagnosis is pain in all 4 quadrants of the body.  It just doesn't always happen at the same time.  I have a few areas that always hurt and areas that flare regularly.  It's the out-of-nowhere pains that surprise me and can be tougher to deal with.  I mean, how do you stretch out toe muscles when your feet feel all crampy and full of knotted muscle?  And you can't exactly massage your butt while walking through Target during a Twinkle Pain attack.  But like I said, if you can keep a sense of humor it's a little easier to cope with the pain. 

The Skating Rink

I took my younger son to a birthday party at a skating rink last weekend.  The skating rink is one of those places that I thought was awesome as a kid but see much more clearly as an adult.  Now, this was a different skating rink than the one I grew up near but I speculate that things are pretty much the same across the industry.  I used to be dazzled by the dim lighting with flashes of color and the loud music playing.  The skaters whizzing past and the blips and bleeps of arcade games created a buzz of pulsating energy.  And then there was the actual skating--the exhilaration of flying along a slick surface while wearing wheeled shoes, the wind blowing my hair back as I careened along, the thrill of stopping by flinging myself into the nearest wall.  Loud, dark, and a little dangerous; it was great!

These days I see the whole adventure in a totally different light.  From the time we stepped out of the car and I could hear the ribcage-rattling thump of pop music, I started to have misgivings.  If the music was audible in the parking lot, what would it be like inside?!  We entered the rink and the darkness hit.  There were flashing neon lights, multitudes of things glowing under the black lights, and the music pulsed throughout my body.  I became disoriented by light and sound, and further overloaded by the whizzing of children going past on skates, narrowly missing our toes, and the zig-zagging of children running through the skaters.  We sought out the birthday party among the craziness.  And the smell--sweat, greasy food, and feet.  I won't even mention the state of the restroom.  Just imagine a setting in which you fear the possibility of contracting a disease.  Perhaps it is a sign of being in my mid-thirties, but I found myself noticing the extreme youth of the employees--not one of them looked over 16!  Ah, a den of chaos chaperoned by hormone-addled teens with only a cursory understanding of responsibility.  What could possibly go wrong there?

We found our group and my son got set up with skates and a pvc contraption designed to help new skaters stay upright whilst hurtling their wheeled bodies along the overwaxed rink floor.  I had chosen to remain on the bench and watch my little man slip and trip around the rink.  After a bit, though, the dreaded question came--"Mommy, will you come skate and help me?"  Drat!  No way to turn that down.  So I paid the insane rental fee for a pair of inline skates and took to the floor.  The thrill of the wind in my hair was still there!  I happily zoomed around the rink for about 30 minutes without either falling or slamming my tender body into a wall.  I was almost able to ignore the dingy decor and the questionable cleanliness as I flew past those carpeted walls.

I'm not going to say that I wasn't sore the next day but the minor pain was well worth it.  It was one of those times when I was able to push myself a bit to be able to participate with my child.  That is a big deal for a fibroMIGHT.  Some days we just can't do what we'd like to be able to do with our kids.  Sitting on the floor to do Legos is almost always a no for me.  Running around outside is another.  So getting to skate with my boy was a real treat.  Even though I had to face the sensory torture of dim lighting, loud noise, and the sensation of being inside of a beehive.  Yep.  The skating rink was definitely better through the eyes of childhood. 

Fibromyalgia Awareness Day!

Greetings and Happy Fibromyalgia Awareness Day!

May 12th is a day dedicated to UN-hiding this hidden illness.  It's a day to help make people aware of what fibromights go through to develop understanding and tolerance.  It's time to get rid of the idea that fibromyalgia is fake or that those who suffer are lazy/should just get over it/are weaklings/etc.  It's a day to celebrate those who beat down fibro in order to live life and enjoy it!  It's a day to wear purple and butterflies!

I was researching fibro ribbons and discovered that there is often a butterfly incorporated into the purple fibro/chronic pain ribbon.  That made me curious so I dug further.  The explanation I found is that it represents the sensory issues that fibromights deal with--how even the softest touch can be painful. I learned years ago that you are not supposed to touch a butterfly's wings because it would be the equivalent of someone hitting you with a hammer.  Sound familiar?  Yep.  And it's not just the sensation of touch that fibromights can be over-sensitive to.  Sound, sight, taste, and smell can also cause problems.  I know I often feel over-stimulated when there is too much noise or around strong fragrances.

While reading that article, though, I saw one comment that drew a connection to the butterfly's metamorphosis from caterpillar as the death of a fibromight's prior life and start of the new fibro life. I'm not sure how I feel about that.  I know I have often grieved the loss of my pain-free life but I don't feel like I've gone from caterpillar to butterfly--moreso the reverse.  I feel like I've lost my ability to fly and now have to inch along.  I won't dwell on that, though, because it doesn't help me.

I also learned about Lilac, Mulberry, Amethyst and The Fibromyalgia Crusade.  There are lots of pain scales out there but I fell in love with this one.  The darker the shade of reference, the more pain.  So lilac is a light pain day, mulberry is moderate, and amethyst is bad.  And they also have LMA for Leave Me Alone, for those days when that's what we want.  I'm going to let those around me know about this scale.  I like it better than giving numbers 1-10 because it seems more straightforward to me.  Yesterday was a Mulberry day.   Hoping for Lilac today!

I also want to tell you all that I found out from my husband that one of our coworkers thinks fibro is BS.  When he told me I saw red.  I was livid yesterday morning over it.  I couldn't look at said person, much less speak to him.  It was late afternoon before I could trust myself to be civil.   I want to confront him.  I want to hear him explain.  I want him to understand.  And I'm mad that his opinion made me nervous about asking for help from the other guys because I was hurting.  That made me feel ashamed and fibromights should NEVER have to feel that way.  The pain I feel is REAL.  The dizzy spells and sensory overload and chronic fatigue are REAL.  It's not in my head.  I've had 2 doctors confirm my diagnosis.  I shouldn't feel like I have to defend my illness but that kind of attitude makes me feel like I do.  One person's opinion doesn't change my reality.

So I push forward and do what I can.  I refuse to have anyone think that I don't do my share or hold my own at work.  I will continue to share my experiences and work to bring fibro out of the shadows.  And I don't want pity!  I don't share my story to have people feel bad for me.  I crave understanding and tolerance.  An offer of help is appreciated, but not when offered with pity or condescension.  I am a fibroMIGHT and I will find my wings!

Spread the word today and help people see what fibromyalgia is all about!  Offer a hand to someone you know who suffers.  Or a virtual hug.  I challenge you to post either a purple ribbon or a purple butterfly to the Facebook page of a fibromight you know (as long as they're open about it--don't out anyone who isn't ready, please!).  You are welcome to use either of the images below that I found.

The Closet of a FibroMIGHT

I did something different for today--I made a video!  Step into my closet and see how complicated getting dressed with fibro can be!

A Salute to Heroes!

You know who my heroes are?  The people I see walking with canes or in wheelchairs who look otherwise healthy--those with hidden illnesses who are struggling but out there.  They haven't given up and they're not letting their illness keep them from participating in life.  Now, we all have days when we have to stop and regroup at home; when the pain is too much we have to decide if pushing is going to make things worse.  And that's okay.

I am a very high-functioning fibromight most of the time but even I have days when staying in bed is the best option.  And I'm no stranger to the motorized scooter.  Admitting that you can't walk through Target on your own and asking for access to a scooter is a hard thing to do.  It can be embarrassing, too, if the employee gives you "the look".  Then you have to deal with the looks and/or comments from other customers.  They don't get it.  Riding on those scooters is awful.  They are so slow and you sit there knowing that if you could walk you could go faster.  You can't reach anything from seated position, either, so you still have to struggle in and out of the seat to get what you need.  No one would go through all of that without really needing to.

I want to tell you about a couple of heroes I've seen recently.  The first is a woman I met at my boys' elementary school Bingo Night.  She was my age (mid-30s) but walking with a cane--a pink, sparkly cane.  I complimented her awesome cane and we got to chatting.  She told me that she has MS and fibro and her attitude is "if you have to use a cane it should be an awesome one!" I love that!  Between the cane and how stylish she was head-to-toe I was inspired.  She must go through so much and yet she is rocking it!

The other hero is one I saw at Disney World.  She was also young but riding a scooter.  If riding a scooter through a store is miserable, can you imagine maneuvering through Spring Break crowds at Disney World?!  She was calm, cool, and collected.  And the whole family was making it work.  I'm sure some people saw laziness or deception but I saw inspiration and dedication.  Those crowds were no joke.  It was hard enough to get through them on foot and I saw crowds refuse to budge for disabled or scooter-bound people over and over again.  

When I can I try to say something to my heroes--just a little word here or there to show that I understand.  People with hidden illnesses hear way too many negative things from outsiders so I think it's our duty to help lift each other up.  I know many who suffer have gotten to the point of further hiding their struggles because people can be so crappy.  I understand.  It's no fun to open yourself up for hurt.  I'm hoping, though, that by being transparent I can not only help others who hurt but open the eyes of those who don't understand.  Maybe if enough people can raise awareness of chronic pain, fatigue, and other issues we can get some real results--more treatments, breakthroughs in what causes it, or even just pull the blinders off of people and quit the shaming.  It's hard enough to suffer.  Suffering in silence and fear is worse.  I have decided to be open and honest about my issues with anyone and everyone.  If you want to know I will tell you.  If that honesty helps just one person I consider it worthwhile.

Perhaps we need a Hidden Illness Awareness Event.  I first thought of a 5K but really?  I can walk that but not all of us can.  How about a Hobble Wobble or a Scooter Rally?  :)  We could even have an alternate transportation relay; we could have canes, scooters, etc that participants would have to use for each leg.  I've thought about this for years--maybe one day I can put it in action.

Gentle hugs and may your day be FibroMIGHTY!

Oil...can...

So you know that scene in "The Wizard of Oz" when Dorothy and the Scarecrow find the Tin Man and he's rusted solid, squeaking out the phrase "oil can"?  Yeah, that's how I feel today.  My spine feels like a solid rod instead of individual vertebrae.  My legs feel weak and knotted.  Even my shoulders and arms are stiff and sore.  Why, you might ask?  The weather.  Yep, fibro has made me a human barometer and that, my friends, is a job I never applied for.  It is a rainy, nasty day.  This whole week is supposed to be more of the same, so I know this is how I will feel all week.  I can help my hormones and I can get sleep but I can't change the weather.

I know some of you can relate and others may be outsiders who are trying to understand what a loved one is going through.  I'm not relating my pain to garner sympathy, but to help others understand or know that they aren't alone. My shoulder and upper arm muscles are so sore that washing my hands makes them hurt.  Crouching down is fine but getting back up takes 3 slow stages and a lot of pain. Don't even look at my back too hard because my skin is so sensitive right now.  Driving is torture because it hurts to turn my neck, holding my arms up to the steering wheel hurts, my calf hurts when working the pedal, my lower back aches from the pressure of pushing pedals and twisting to drive, and the places where my legs meet my pelvis feel like they're being pierced with shards of glass.  I also find myself gritting my teeth so my jaw hurts a bit.  And being in this kind of pain (I rate it a 6) is exhausting.

Unfortunately, being tired and in pain causes Fibro Fury.  The prickly form of irritation that makes me snap at my husband and yell at my kids.  And that leads to guilt because I know it's me and not them--well, not entirely, anyway.  ;)  Ugh.  I want to calm down but every little thing seems huge in the moment.  I'm hoping that wine and some extra magnesium will give me some relief for tomorrow.   I try to keep my smile on but it's hard.  Some days are just like this--full flare fibro.  Coping is tough but I know my triggers and I've learned some tricks to help make it through.  Thank God for my wonderful, understanding, and supportive husband who knows to ignore my outburst and give me kisses and gentle hugs without any back patting.

Gentle hugs, my fibro friends!

Let's talk about spoons!

Most people who know me in real life have heard me talk about my spoons--usually that I don't have enough of them.  Some of you may know what I'm talking about but a lot of you probably don't.  There is a fantastic article about living with a hidden illness over on But You Don't Look Sick?.  Here is the link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.  When I was diagnosed with fibro I was directed to the "Spoon Theory" story and I am so grateful for that!  The story is a great way to help fibromights explain things to those without and it's a great way for friends and family to understand what a loved one is going through.  

The short version is this: people living with a chronic illness start the day with less energy and use it up more quickly.  The energy is represented by spoons.  As a fibromight, I am always low on spoons.  Simple things can use up more of my spoons than they used to and that is extremely frustrating.  It can also be frustrating for those around us, who don't understand why we can't go to one more store or why we NEED that nap.  We have to budget our spoons carefully; what we do one day can steal spoons from the next day.  Budgeting spoons is a delicate and irritating part of fibro.  It sucks.  A lot.

So what can we do about it?  Doctors will tell us to keep moving and exercising.  I think there is some truth to that but we also have to be careful not to overdo it and end up in more pain.  It's tricky.  And getting enough sleep is essential but we will still be tired.  My rheumy told me I need a minimum of 7 hours per night and I have to agree with him.  I noticed a huge difference from when I was only getting 6.  But I still need my weekend naps.  

People are often amazed at my energy level and ask what I do, so I will share.  #1, I am mildly ADHD and have naturally elevated energy.  Sorry, no trick there.  #2, supplements.  I take magnesium and a good multi-vitamin.  Nutrients are very important.  And #3, OrganoGold coffee.  You will hear me mention this one A LOT.  When I run out people can tell.  It is the single best thing I've found to boost my spoons.  I don't sell it so I'm not pitching my business here.  It is simply amazing!  My coffee dealer, Dannella, could give you all the details but here is what I know: it is a specially produced coffee with extra B vitamins and a mushroom complex.  It doesn't make me jittery and it gives me energy that lasts all day while boosting my mood, as well!  I like the Latte, either in a smoothie with bananas and strawberries or hot with vanilla almond milk and a hit of chocolate syrup.  If you are interested in learning more, here's a link; Magical Coffee .

I also want to mention a friend of mine who makes the cutest Spoon jewelry.  She has chronic pain, too.  I have one necklace already but I want more!  They also make a great gift for the newly diagnosed.  Nerd Chic Boutique

May you always have an extra spoon, fibromights!

Welcome to my world!

Hi!  My name is Allison and I was officially diagnosed with Fibromyalgia in 2012, though my symptoms began much earlier.  I am a working mommy to 2 boys and a wife to a wonderful, understanding, and caring husband.  I am extremely fortunate to be surrounded by people who love and support me no matter what I'm going through.  That is an essential part of my story and my life.  I couldn't do what I do without them.

I'm guessing if you found this blog that you have at least a rudimentary understanding of Fibromyalgia and what it's all about.  If not, I'll try to sum it up for you--despite many studies, doctors still aren't sure exactly what fibro is or what causes it.  It is a collection of symptoms that includes muscle and joint pain, depression, fatigue, stiffness, digestion issues, tender points, etc.  Basically, fibromites (a term I picked up to refer to us :) ) hurt and are really tired.  A lot on both counts.  We don't all have the exact same symptoms or the same degree of pain and we don't all respond to the same treatments.   I'm pretty sure the princess in The Princess and the Pea was a fibromite--only we could feel a pea through those mattresses. ;)

Let me introduce you to my personal symptoms: allodynia (my skin hurts; seriously, it's awful), muscle tightness and pain, achy joints, extreme fatigue, stiffness (picture the Tin Man before Dorothy oiled him), periodic digestive issues, and depression.  I don't mention all of this to garner sympathy--we all have our struggles and these are mine.  I can't wear cute shoes and I have to choose clothing based on what I have the energ
y to wear and whether or not my skin is hurting.  Sometimes it is physically difficult to expand my lungs to breathe because of fatigue and tight muscles.  Sometimes I cry because I can't do what I use to be able to do.  Fibro sucks.

BUT...I refuse to let it beat me down and take my quality of life away.  It's not a fatal illness but it's disruptive and relentless.  And I fight.  So call me FibroMIGHTY!  I have found ways to accommodate my fibro and live a fairly normal life.  I can't do it all but I do what I can.  I want this blog to be a source of comfort and inspiration for other fibromites--or anyone with a chronic, hidden illness.  The way I see it, we're all in this together.   So let's change the term "fibromites" to "fibroMIGHTS"!  Gentle hugs, friends!