The Mother of Guilt

   Wow.  It has been awhile.  To be honest, I've been struggling.  Not all with the fibro, I've been a little overwhelmed with life.  Big Red started middle school this year and he joined band and Robotics Club.  Obi John and I decided to join the boys in doing martial arts.  I am still loving my position at the preschool but it is very busy and takes a lot of energy so I get home tired.  I'm still singing with the choir and helping with the youth group at church.  It has also been made clear to me that my undiagnosed ADHD is becoming an issue.  I feel awash.  I feel like I'm failing at everything.  I don't want to give anything up--not helping with robotics, working with youth, being a Younique presenter, or writing this blog.  I feel more than ever that my purpose in life is to help others.  I can't give that up but I need to help myself some, too.
   I've bought a couple of books about getting organized and on top of things with ADHD and so far I'm learning a lot.  The struggle to be organized coupled with chronic fatigue and pain is a potent cocktail.  Have I talked about the guilt before?  If I focus on one area I feel guilt for falling behind on another.  If I take time for me then I feel guilty for not giving time to my kids or husband.  It's a vicious cycle that I haven't learned to control.  Guilt over not being more efficient at work, guilt over not being a better volunteer for robotics, guilt for not being more aware of my kids' school stuff, guilt over not cooking real meals regularly, guilt over not working my makeup business, guilt over not being a better housekeeper, guilt over not being a better youth leader, guilt, guilt, guilt.  Ever-present, coming in waves.  Am I good enough?  Am I letting people down? 
   I have no answer to this conundrum.  I pray for guidance.  I work on getting organized piece by piece.  I think it might be a good start.  If I'm better organized I can get more done, right?  This is the hard part; finding the time to work on organizing in addition to making sure I rest enough to keep the pain and fatigue at bay. It's time to beat the guilt back and work on one baby step at a time. 

Wax On, Wax Off

     I hope that watching my kids do jiu jitsu counts as exercise because I get tired just watching!  Tonight they are pummeling hanging bags.  I relate more to the bags than the fighters.  I feel like I'm just hanging on and that I've been kicked and punched a few dozen times.  But that's just a normal day in my life sometimes.  Rainy weather is guaranteed to give me the punching bag sensation.

    Secretly, I am envious of the kids and the adults that I see.  I would love to learn these techniques.  The moves that they learn are beautiful in their form and badass in execution.  Monkey is strong in kata, the display of forms, but Shaun is fierce in sparring, the fighting part.  I am so proud of how hard they work in class and of how far they have come since the beginning. Honestly, I'm proud of all of the kids that I've gotten to watch over time.  It's pretty amazing what they can do.  It's even better knowing that they are learning to defend themselves.  Not to mention the confidence and discipline that the teachers instill in them.

   I mentioned adults, too.  Some of the parents take classes here, too.  What better stress relief after a day at work than getting to funnel your frustration into a workout that includes punching?!  It looks like great exercise that builds lean muscle and core strength.  Plus it's just plain cool to see a grown woman looking like a whirlwind of pain!  I would love to pull that off.  I just don't think I have the stamina to keep up or the ability to get hit without really hurting.

    FibroMIGHTs always hear that we're supposed to exercise to help the pain and fatigue but it's difficult to believe when it takes so much effort to do regular daily activities.  I used to do Zumba and I admit that it felt good but it got to be too much for me.  Now I struggle not to fall asleep as soon as I get home from work.  We have a treadmill in the basement that I used to walk on but I feel like I don't have time--or that it will use up too many of my spoons and leave me worse off.  It's a tough situation.  I also know that losing a bit of weight and developing my muscles would be a good thing.  It is a catch-22 for me.  I guess I need to suck it up and start small.  Maybe if I get back on the treadmill I can work myself up to something more after awhile.  One must start small, grasshopper.

Liquid Sunshine

Greetings and salutations!

Despite the fact that I am dying to take a nap against the dojo punching bags while my boys do jiu jitsu, I am going to talk about energy.

My family went to Disney back in September, our second trip there as a family and since I developed fibro.  Each trip lasted 5 days.  That's five days of walking in the Florida heat and humidity.  We stayed up late and got going early each morning.  My Fitbit registered upward of 20,000 almost every day and I passed the 10 mile mark at least once.  I expected to be the one holding us back and crapping out but I didn't!  I kept up and never really felt like I'd overdone it.  Obi-John kept an eye on me and was sure to ask if I needed to rest or take a break.  It was an amazing feeling.  And it was like that on both trips.

When we got home this time I started to wonder how I pulled it off.  Was it just the excitement of being in Disney World?  The determination to keep up?  A reprieve from the mighty fibro gremlin?  Here's what I came up with:  sunshine.  I don't get a lot of sun exposure in my daily life.  I'm sure you're shocked, given the glowing porcelain sheen of the skin showing in my blog photo.  I became convinced that it was energy from the sun giving me superpowers, like Superman but without the ability to fly or complete more than basic daily tasks.  Then I thought about how to replicate those effects at home.

The answer is vitamin D3.  I had heard about supplements and know that we get vitamin D from the sun but I hadn't ever given it much consideration.  Since I already take a handful of pills each day I decided to look for a gummy version.  I've been taking them for a few months now and I have to say that I definitely notice a difference.  The standard level of fatigue has become less and more manageable.  I wish I hadn't waited so long to give it a try.  They're tasty, too.  In fact, Obi-John has started taking one each morning.  I feel like the D3 helps with circulation, as well.  My extremities don't get as cold.

Even though I don't relish the idea of having added something else to my pile'o'meds it has been absolutely worthwhile.  There are days when I just don't want to take my supplements.  I get tired of it sometimes.  I'd like a break.  But fibro and ME don't give me one so on I prance, thanks to my oils, tablets, and gummies.  I'm still not on any prescription pain or fibro meds.  I'm thankful that I can get by on natural options because I tend to have awful reactions to the prescriptions.  And that extra D3 seems to keep me walking on sunshine.  Gentle hugs, fibroMIGHTS!

The Fibrofly has landed!

Eek!  It has been WAY too long since I posted.  It's not that I haven't had ideas or things to say, it's just that I've been struggling with time and energy.  It seems like I always have too much of one and not enough of the other, whichever way it happens.  Anywho...

You may have noticed that I have a fancy new photo as the header on this blog.  That is a very proud thing for me.  I have wanted a fibrofly tattoo for a long time and always had the intention of featuring it on this blog.  My first struggle was deciding on body placement for my beautiful butterfly.  I knew I wanted it to be fairly visible because I want people to see it and open up a discussion in which I can lay down some fibro knowledge on them.  I asked around for ideas for a feminine placement that would be noticeable and someone finally suggested the bicep, as a symbol of strength.  Pow!  Mind blown.  Epic idea.

Design ideas were easier for me.  I had a few concepts that needed to be included but, other than that, I left the design up to my awesome tattoo artist, Dave.  Now, here is where I have to admit that I really intended for the tattoo to be smaller.  As in, about half the size it is.  But when Dave put the stencil on it looked really good.  And then the ink went on and it was a little bigger than the stencil.  I always forget that the finished product ends up bigger than the stencil.  So Dave actually did 2 tattoos on me that day--the fibrofly ("a spoon?") and a memorial piece for my mom (a beautiful angel on my shoulder blade).  Yes, I went through that pain on top of the pain I have everyday.  And it was worth every moment.  Sort of--the inner arm hurts really badly, I'm not gonna lie!  I am still adjusting to having a tattoo on my arm that I see so often but when I think about its meaning I smile.

Ok, let me break down the meaning of the various aspects of the tattoo for you.

The body is a spoon.  Obviously.  That is a reference to "The Spoon Theory" and if you haven't read it I have a link to it in my very first blog post.  Notice the various shades of purple--some lighter and some darker.  That is to represent the various and shifting levels of pain that I experience.  The darkest purple is in the smallest quantity and that worst pain level is my rarest.  I love that he chose outstretched wings, a butterfly in flight, because I choose to rise above the pain.

I got to share my fibrofly at church on Sunday as a part of my Children's Moment.  I was asked to give testimony about overcoming weakness.  I asked the pastor if showing my tattoo was alright and I was pleasantly surprised to get the go-ahead.  I was honored to share my story with not just the kids, but the congregation at large.  I'm not the only member with fibro but I think I gave the group a greater understanding of what a FibroMIGHT's life is like.  I noticed a definite response when I explained that sometimes hugs can hurt me.  So far this tattoo has accomplished exactly what I set out to do in getting it and I look forward to continuing to raise awareness for those who live with chronic pain.  Gentle hugs, FibroMIGHTS!

My spirit animal is a sloth today

Today is one of those days when my body says, "sit the hell down."  I guess I've been pushing through a lot lately and the ME (or Chronic Fatigue Syndrome) put the smack down today.  I slept in until almost 10 and still ended up napping in the afternoon.  And now I find myself struggling between feelings of guilt and need.  It can be so hard to listen to my body and what it needs.  I have clothes that need to be hung, makeup work that needs to be done, laundry to be washed, kids, etc.  I did cook us all breakfast but then crawled back into bed with my laptop and notebook to do some work while watching Supernatural.  The crazy thing is that even shifting in bed makes me breathe harder.  That's a big clue to an ME flare, for sure.  I have felt positively bleh today.  I feel like I owe Obi-John and the boys an apology for being so useless today but instead the boys made sure I could rest and Obi-John told me not to apologize.  I'm a lucky lady.

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Ok, so I got too tired to continue the other day.  It's been 3 days now and the ME flare is still going.  I'm now angry.  I'm really angry.  I've never been okay with the phrase "I can't" but it's been forced upon me with this flare.  I have things that need to be done--clothes that have needing hanging for about 5 days, school preparations, etc.  I have things I want to do--games with my boys, cooking, etc.  Instead, I'm back in bed, resting.  Except that I'm frustrated because it seems like no matter how much rest I get I never really feel rested, especially during these flares.  It's not that I don't enjoy binge-watching Netflix.  I just don't enjoy having the other options taken away.  I hate having to say that there is something I can't do.  I hate this.  And yet I don't even have the energy to be good and angry.  I'll be honest, I'm struggling today with being positive.  I'm struggling to be upbeat.  All I can do is hope that tomorrow the flare will begin to ease.

Aquagenic Pru-what-us?

I'm about to sound crazy.  I used to think I was.  Now I know that I have something called Aquagenic Pruritus.  I'm sure you've never heard of it.  It is rare and not fully understood.  So, what is it?  It's a skin problem that is triggered by water.  It's almost like an allergic reaction.  How ridiculous is that?!

For as long as I can remember, I've gotten itchy after bathing, swimming, or otherwise getting wet.  It isn't every single time and the severity varies from time to time.  The word "itching" doesn't really cover it, though.  It's really intense and prickly and the sensation can last over an hour.  Some people describe it as bugs crawling under the skin.  I think of it as the worst "pins and needles" sensation ever.  The prickling is mainly on my legs but sometimes on my arms, as well. There is no visible issue--no bumps, hives, etc.  Scratching helps for a moment but then I feel like scratching my skin off.  Lotion doesn't help because it's not dry skin.  It is intense to the point of distraction and tears.  It's frustrating.

A few years ago I was suffering from a particularly bad bout of it and decided to Google it, on the off chance that I wasn't alone.  Sure enough, my search for "itching after showering" returned thousands of results.  That's when I found the term aquagenic pruritus and accompanying information.  I found support groups full of people who suffer with it to the point of avoiding bathing altogether.  I was amazed!  Not only was I not crazy, I wasn't alone, either!

That's when I started looking for treatment options, which is when the bad news came up.  There are ideas and suggestions but no "cure" or guaranteed treatment.  Antihistamines and antidepressants can help some people, and I certainly get relief from mine.  When I started taking both daily was when my symptoms lessened.  Some people get relief from certain water temperatures but I haven't noticed that for myself.  I seem to do better if I bathe at night or if I drink water before my morning shower.  None of that is full-proof but it's better than without.

Obi-John, God bless him, didn't bat an eyelash when I mentioned my search results to him.  He had seen me curled up in the fetal position, scratching, and in tears so he knew what I was experiencing.  Then I got brave enough to mention it to my primary care doctor, expecting doubt from her.  Instead, she knew about it and listened to me.  She didn't have any suggestions but appreciated hearing what works for me so that she could pass along ideas to other patients who are suffering.

I don't know if any of you have these symptoms--I've always been nervous about sharing my symptoms with others since it sounds crazy--but I hope knowing that you're not alone helps.  Gentle hugs!

Lesson Learned

Time got away from me and it has been far too long since my last post.  I’ve had many ideas for topics but not the energy to sit down and write.  Today I am making time.  My last post was about camping and this one stems from the same activity.  I mentioned that I would be going with my family on a Cub Scout Camping Trip.  Let me tell you about the good, the bad, and the big lesson I learned.

Prior to the trip we shopped for food, made lists of items needed, and loaded the van with a multitude of camping gear.  We were well prepared for what we expected—we had a nice tent, air mattresses, etc.  We arrived at the camp and signed in.  The deal was that we had to drive to the site, unload, and then park back at the camp entrance.  That seemed harmless enough.  Hah!  We found our designated site—wait, no, we found a cul-de-sac with a sign that indicated our site was back away from the road.  Uncertainty set in.  We found a sign at the beginning of a trail that we assumed would lead to our site.  We began to hike said trail, following it up the side of a hill as it meandered through the woods.   After a few twists, turns, and a flight of wooden stairs we happened upon our designated campsite about a quarter mile from our van. 

Concern set in.  The upside?  Our campsite had what were essentially cabins, complete with bunk beds.  There was a fire pit, covered picnic pavilion, and running water from a simple spigot.  Well, we wouldn’t need our tent, mattresses, or water supply.  How much stuff could that leave to be dragged up the hill?  A LOT.  It took many, many trips as dusk descended.  My Fitbit was racking up steps a rate never before seen.  It registered my hikes as over 50 flights of stairs.  We managed to get every up and settled, including the generator that Obi John wanted so that we could charge our phones and run a fan—aren’t we rustic? 

Exhaustion set in.  The kind with heaving breaths and near-blindness, screaming muscles and the desire to dissolve into a puddle.  After some fire-roasted hot dogs and the mandatory s’mores we crashed for the night.  I will admit that the sleeping arrangements were pretty decent for a cabin.  I had a double mattress and a cozy sleeping bag.  The fan kept us cool.  The night was peaceful.  And it was good.

Morning broke and I felt like I had, too.  But up I got and Obi John and I put together a pretty nice breakfast of eggs, bacon, and grits.  We skipped the morning flag ceremony, which proved to be our downfall.  Whatever they told Obi John at the previous evening’s parent meeting didn’t cover the daily schedule.  So off we trekked, looking for the plethora of advertised activities.  We walked and walked, looking for fun.  We found a lot of nothing, waaaay over on the other side of the camp.  Did I mention that the roads were all crushed rock? 

We eventually ran into to the other families from our den and managed to do a couple of things before the scheduled hike.  I hated to admit it but I wasn’t up for the hike, which I had been really wanting to do.  So I parked my tired hide in a rocking chair and read, part of the time with my eyes closed.  A couple of hours later I received a call from Obi John informing me that the majority of the hike was vertical and I would not have made it.  Minutes after disconnecting the heavens burst forth with a monsoon.  I rocked for another hour or so until my tired, soggy family returned.  We attempted a bit of fishing but the only thing that was caught was a tree. 

The rain abated and we decided to take advantage and load the van with all but the bedding and breakfast.  Obi John had managed to bust his knee on something and Monkey twisted his ankle while hiking so I did the lion’s share with help from Big Red.  I dragged myself back up the hill after packing and re-parking just as the rain began again.  We conceded defeat to the rain and had a quick dinner before retiring to the cabin-thing.  The next morning we managed to get ourselves and the remainder of our belongings to the van and headed to civilization for breakfast. 

I don’t want to give the impression that no fun was had—it was.  Amid the chaos of poor planning by the campground and bad weather we squeezed in some good, old-fashioned family fun.  We played with fire, ate things on sticks, and got dirty.  I also learned a very valuable lesson.  I have to ask for special accommodations.  I asked about campsites for those with disabilities and of course they have them.  It hadn’t even occurred to me to ask.  I need to start doing that.  Obi John is now charged with helping me remember to ask about accommodations when going places.  It isn't a matter of wanting special treatment, but a matter of knowing my limits.  Lesson painfully learned!  

Fibro Camping

Let me start by saying that I do not come from a strong camping background.  I grew up in South Florida and failed to stay for the entirety of any Girl Scout camping trip I ever attended.  In fact, it's a big part of why I was asked to leave our troop.  Yes, I was essentially kicked out of Girl Scouts.  But that's a story for another day.  Today I'm talking about adulthood.

I've been camping twice as an adult, both times with work.  The first trip made me extremely apprehensive.  I mean, I couldn't handle it before fibro so how could I possibly make it through now?  Obi-John and my coworkers cajoled me into joining in and I am very glad they did.  And then this year I was actually excited about the trip.  Sure, I was tired and sore by the time we got home.  But as part of my whole "I won't let fibro run my life" thing it was worth it.  Obi-John and I slept on an air mattress in the emptied out trailer that hauled all of the equipment to the site so we had a pretty cozy set up.  It got chilly but not terribly cold this year and we ate really well--full breakfast with eggs, meat, and biscuits, dinner of burgers and brats one night and steak kabobs the next night.  All of that makes camping pretty sweet.  This year the girls (me and the only other female coworker) even got to pee in the defunct camper on site.  Less peeing in the woods was a definite plus.

Home Sweet Cargo Trailer

I'm in the woods!

This weekend will be a different story altogether.  We are participating in Cub Scouts Family Camping, so it's us and the boys.  In a tent.  For a weekend.  We won't have the gourmet cooking so we're working on food plans that work for all of us.  It is a scout campground, so I'm hoping for real bathrooms.  The boys will be doing a bunch of scout activities and I imagine we will have to tag along.  There will be hiking, which I do enjoy.  I'm guessing that means not a lot of downtime and rest for Mommy.  I'm working on staying positive about this despite feeling apprehensive.  My mantra right now is "this will be fun," accompanied by an only slightly maniacal smile.  I want this to be great.  I want the boys to form memories that they will cherish forever.  I want my body to suck it up and cooperate for a weekend so that I don't detract from the experience.  And I totally plan to soak in a hot bath immediately upon our return home.

To recap: I'm not sure which is the bigger accomplishment--camping with fibro or simply camping at all, given my history and disinclination to partake of nature.  My dad is getting a big kick out of the fact that I'm doing all of this camping.  He still (fondly, I'm sure) remembers those midnight calls to come get me from a campsite.

Whatever your weekend plans, I wish you good times!  Gentle hugs, FibroMIGHTS!

Pow! Supermum

Since my mom passed away, I've been doing a lot of thinking, especially about motherhood.  Unfortunately, my motherhood is tainted by fibro.  When I think about my mom I often feel inadequate as a mother.  But I've come to the conclusion that most mothers feel that way at some point--and that feeling is one of the things that makes us good mothers.  If we are always striving to improve it is a sign of our deep and unending love--even if sometimes we want to hide in the closet with a bottle of wine.  Fibro adds an extra layer of difficulty and a couple extra layers of guilt to motherhood.  Here is my experience as a mother and FibroMIGHT:

My first recognizable fibro symptoms appeared as soon as I became pregnant with Big Red.  It wasn't until much later that I was diagnosed and came to understand that the first rush of hormones was the likely catalyst for my fibro journey.  Flares were few and far between at that point, and my biggest problem was the standard sleep-deprivation that comes from having a newborn.  I still chalked my periodic muscle pain up to viruses since that's what the first flare was declared to be.  Unexplainable, all-over muscle pain every few months didn't spark questions for me at the time.

After Monkey was born I developed post-partum depression.  PPD is awful.  I knew that what I felt was wrong.  I knew that I wasn't being fair or reasonable.  But I couldn't change it.  I was terrified that Big Red was going to seriously hurt or kill Monkey.  I was a terrible mom to Big Red, bordering on abusive.  I can see that now.  I wanted to run away with Monkey and hide, just the two of us.  I hated letting my husband or anyone else take him.  Tension bloomed in my marriage.  I knew I needed help but the idea of asking for it was scary.  Telling the OB/GYN that I was having trouble is one of the hardest things I've ever done.  But I put on my big girl panties and accepted the meds.  It helped and I gradually began to feel like myself--which meant coming to the realization that I had been treating my first-born like dirt.  It still brings me to tears to think about and I wish more than anything that I could take back much of what I said and did.  Depression made me a monster.  Antidepressants made me myself again. 

As the boys have grown, so has my anxiety about being the right kind of mom.  I have to work full time.  That has made me worry about whether or not I'm spending enough time with my boys.  The chronic fatigue makes me so tired that when I do have time I sometimes can do no more than be in the room with them.  It also means that I don't do a lot of cooking, so I feel like I'm not feeding them properly.  I don't even want to talk about cleaning.  My house is consistently a disaster and if it weren't for my live-in father-in-law it would be filthy, too.  I can't do it all, or even most of it, on my own.

But that is okay.  Let me say that again.  IT IS OKAY.  All moms need to go a little easier on themselves, but definitely FibroMIGHT moms.  You know why?  Because it's the small moments that matter.  I remember all of the ways my mom was a good mom but my inner child remembers the love.  And that, my friends, is the point.  I may not have the most energy, cook the most meals, or keep a tidy house, but I love my boys fiercely.  Gentle hugs.

What Would Jackie Do?

This is going to be a long one and not easy to write.  I am losing my mother to cancer.  She was diagnosed with stage IV lung cancer in early November and her battle is reaching its end.  To say I am shattered is an understatement.  She has never smoked and she beat cancer 35 years ago, having had kidney cancer while pregnant with me and not knowing it.  This post is about a woman has always been a hero to me.  This my eulogy for her.

My mom is an amazing woman.  She has spent her life working hard and loving those around her.  She grew up in a very rural setting and went away to college in an era when women's job choices were still mainly limited to nurse, teacher, or secretary.  My mom majored in Secretarial Sciences and went to work for IBM.  She was a secretary, sold Selectric typewriters to schools, and ended up teaching employees how to work as a team.  She said jobs were created for her on more than one occasion.  She also told me that she was career-focused and never planned to get married or have kids.  People who know her can't even fathom my mom not being a mom.  Luckily for me, she fell in love with a handsome man and had me.

This is the part where the first cancer showed up.  Just after I was born, the doctors discovered a tumor in one of my mom's kidneys.  She went through an emergency c-section, a biopsy, kidney removal, and radiation treatments.  And she beat it.  For 35 years she was cancer-free.  Neither a drinker, nor a smoker, my mom's only real vices are cut-glass dishes and reading. She is a giver and a nurturer.

Growing up I knew I had a great mom.  But it was my friends and hers that made it really obvious.  My mom is Donna Reed, June Cleaver, Martha Stewart (but without the nasty attitude).  My friends loved coming over because my mom always had stuff on hand to make chocolate chip cookies, and was willing to throw a batch together on a whim.  I even had someone tell me back in the day of those "WWJD" bracelets that for her it meant "What Would Jackie Do?"  I remember one friend awed by the fact that my mom would make rolls from scratch ("You can DO that?!").  If I left my jacket at home my mom would drive it to my school.  She taught me to sew and love it.  A friend described her recently as "a woman from a different time" and I think it fits and I am grateful for it.  I love that my mom taught me cooking and sewing, skills not often seen in my generation.

Since becoming a mom myself I have often wondered how my mom did everything that she did.  She worked full time until I was 12, cooked dinner almost every night, kept the house spotless, and spent time with me.  I asked her the other day how she did it all and, cancer having taken her voice away, she responded with a Bewitched nose wiggle.  She set the Mom Bar really high, even with points detracted for the "compromise haircut", aka mullet, that she talked me into in 3rd grade.  I often feel that it is hovering high over my head without hope of reaching it.  My house is a disaster, I cook maybe twice a week, and I'm so tired after working all day that I don't feel like hanging out with my kids all the time.  And now she is an awesome grandmother--baking cookies with my boys and telling them stories of her childhood.  Watching my boys tell her a final goodbye was the hardest thing I've ever done.

That's just what she has done for our family.  You also need to know how she has treated others, making them part of our family, too.  Whether a teenager in need of looking after or a grown woman needing support, my mom has been there.  She guides with patience and love, gives advice without coercion,  She has always guided gently and given encouragement to follow my heart to where I am happy--no judgement.  Those of us who have been under her wing are truly blessed.  I know a lot of people who will feel her absence.

So as I sit by her bedside, holding her hand, I think of her legacy.  She has left an imprint on many hearts and as long as people spread the love she gave, then her memory carries on.  I have promised to be gentler on myself and focus on the love I give my children instead of how cluttered my living room is.  I may not be able to do everything the way she did but if I share the love she taught me then I know she will be remembered.  Big Red, wise beyond his years, said it best this morning as I walked him to the bus stop--"When Gram goes to Heaven she will be an angel watching over us."  By her side I can feel the presence of God and my grandfather, her dad, who died of cancer when my mom was my age, and I know that Big Red is right.  She taught me to be strong, independent, and resilient.  Now I will use those qualities to carry on without her.  Without frantic calls about whether my ground beef is safe to use.  Without words of encouragement when I feel broken.  Now it is my turn to do as she taught me.  I love you, Mom.

Elephant Backpack

I posted awhile back about fatigue.  Well, that was fibro fatigue.  This week Ihave been feeling the full effect of Chronic Fatigue Syndrome and it blows my regular fatigue out of the water.  When my rheumy mentioned that the 2 issues go hand in hand I wondered how I would know the difference; now I know.  CFS has a different feel to it, the fatigue has a different quality about it.  This has been a new experience  for me and so the learning curve affects both my husband and myself. 

I asked a chronic pain friend for help explaining to Obi-John what I've been feeling.  She immediately replied with an analogy using Han Solo and carbonite.  This works well for the "unrefreshing sleep" aspect of CFS because were I to be encased in carbonite for a week I would still feel sleepy when rescued.  I'm used to feeling tired physically and maybe sleepy in the evening.  I'm even used to struggling to wake up many mornings.  But the sensation of being so sleepy that driving to work and making it through a half day there is unusual. 

I've decided that the best way to describe this past week is that it's been like wearing an elephant on my back.  A ninja elephant.  It attacked suddenly and without warning on the way to work one morning.  I felt pretty good when I got in the car with my coffee and my tunes.  My drive is about 30 minutes and by the time I got to work I could barely stand.  I almost fell getting out of my van.  I trudged into work and got winded from the effort.  I did as much desk work as I could.  I had to support myself on the counters to walk around when I came out of the office.  I moved like a turtle through molasses.  Fortunately, I only had to work until 2 that day.  I went home, crawled into my bed, and fell asleep. 

That was the worst day by far, but my friend, the ninja elephant, has been riding piggyback since then.  I've napped a couple more days and spent as much time resting as possible.  I feel like I'm letting my family down but they've been pretty understanding so far.  My patience is thin and my temper is quick.  My muscles are tied into achy knots and my joints throb periodically.  Going to bed early doesn't seem to help.  I went and had a 90-minute massage this afternoon and the masseuse said my muscles are pretty high on the ridiculous scale.  She did a lot of good, though, I feel.  Maybe the elephant went on a diet because he seems a little lighter than before.

Like I said before, this experience has been a new one for me.  I've been researching more about CFS and I have learned some interesting things.  Muscle pain and weakness, joint aches, and food sensitivities have all shown to be connected to the syndrome.  I have mixed feelings about that.  On one hand, I feel good to know that my other symptoms are part of the same issue and not a bunch of other, separate issues.  Phew!  But that means that CFS is a really nasty customer.  Like wearing an elephant backpack isn't bad enough. 

I haven't found any magical beans or other amazing cures so I suppose I have to ride this out until my pachyderm friend is ready to leave.  I'm hoping that he does.  I am holding out hope that this is not my new normal.  If it is I will find a way to cope, after tears, anger, and the other kaleidoscope of emotions that come with chronic issues.  For now, I'm watching Big Red and Monkey practice their jiu jitsu.  Gentle hugs from a very sleepy fellow FibroMIGHT.

'Cause I got to have faith, faith, faith

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

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

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

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

Fun with my Fitbit

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

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

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

Flight of the Fibrofly

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

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

Ready to walk!

And we're off!

Hard to tell, but this was quite a hill.

Salsa music has me in the groove!

Halfway point!

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

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

Finish line!

Showing off my spiffy medal and my sexy fanny pack.

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

Sharing is Caring

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

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

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

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

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

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

Can I get partial credit?

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

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

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

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

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

Phases of Fibro...it's a circle

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

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

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

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

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

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

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

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

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

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

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.