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.