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!