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.