Tag: fibromyalgia

The Laundry Still Gets Done

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Take me to the top

I don’t wanna cry no longer

Take me to the top

Can’t you see I’m getting stronger?

Take me to the top

Yes there’s room for me and others

Take me to the top

Hey that’s where we will recover!

A simple song, yes it is, written long before I knew the diagnosis of Lyme Disease and sometime after the diagnosis of fibromyalgia.  How could I have known how long this journey would last nor how rich the experience would be if I just “bothered to recover.”

Yes, doing the work of recovery from any illness, addiction, loss, or heartache is a bother!  It takes time, energy, resources, finances, and emotional strength.  When I did it all on my own with my own determination I did get somewhere for a while.  After all I was told at a very young age that I am a “very determined person.”  I’ve tapped into books, self-help resources, 12-step programs, support groups, special diets, supplements, retreats, doctors, specialists, the internet, advice from others, my own creative intuition, and so on.  Yup, I should have figured it all out by now if it were up to me.  Just gotta keep staying positive, helping others, practicing gratitude, and memorizing a ton of slogans and following helpful inspirational wisdom from others on the journey ahead of me.  Hey that’s were we will recover . . .

Well guess what?  It ain’t enough!  No amount of wishful thinking, earthly wisdom, and STUFF is enough to cure or figure out the consequences of living in a fallen world.  This world is not perfect and everything will not be revealed or resolved by the right karma, nirvana, carpe diem, keeping my chin up, and the like.  Sometimes the world simply does not make sense.  I’ve heard the trouble of this world described as the influences of three forces acting against us:  the world, the flesh, and Satan himself.  Maybe so.  Or maybe it’s a combination of them?  Perhaps you would debate me on many of these points.  That’s o.k.  I welcome it.

You will never convince me however that this world is my home and that what I see is all there is.  You will never convince me that there is no purpose to our suffering and that it will end if we just do this or that.  You will never convince me that I deserve better, am entitled to more and should just set more goals to have them.  Sometimes my best is to lay low, to settle where I am.  You will never convince me that if I don’t act now, I will  miss “the boat.”  His timing is perfect now and forever.  You will never convince me there is no God because he allowed this suffering to happen.  Sorry.  I have seen too many blessings that I would have missed or screwed up if I acted to change things in my own strength and timing.  I know better than all this and you can too when you consider inviting Jesus into your heart.

So today, despite the pain and the wretched symptoms last night, the laundry will still get done.  How is that?  It is not by my strength that I live but by He who lives within me and this includes the gumption to fold towels!  When I tanked this afternoon I chose to read The Word first and not surf the net.  Why?  Since He is my ultimate source of wisdom and peace I simply cannot waste my time or energy elsewhere.  They are too precious these days.  Then it didn’t take very many of these precious moments before my relatively small list of things to do became overwhelming.   That’s when I came before the Lord’s throne of grace and He met me there.  Looks like writing about Him was my most important task on the list.  And if I wondered why I couldn’t do something else instead (like go to work or work on my home business), I had to let it all go to the God who holds my life in the shadow of His loving arms, His loving wings.  He knows the right time for everything.  He knows why all this is allowed in my life and He will be glorified in the end.  My best is in the best of hands.

So me and my unfolded laundry are pretty stubborn this afternoon.  Have I convinced you?  I’ll get to those clean washcloths soon enough and I’ll be glad the One Who loves me and knew me before I was born got to me first today.  Forget the laundry.  Hey Elle, where’s your leash?  Remember that walk I promised you yesterday?  Bow wow.

Mulching in the Dark

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Turns out that Graber Lumber in Spencerville, Indiana has sterilized and dyed hardwood mulch.  I’d already had a headache for several hours when I decided it wouldn’t make it any worse to drive 23 minutes longer to go pick up a load.  Turns out their stuff is great!  It was so finely shredded that I lost hardly any of it on the road home.  And that’s when temptation set in . . .

I haven’t finished re-digging the borders of our garden beds yet since my health is so inconsistent these days.  My rule usually goes that I don’t purchase mulch or new plants until the Spring clean-up is completed.  Well if I kept to that condition when my health is so up and down and down, I might not get the vegetables planted until June!  So I do a little of this and a little of that depending on the energy expenditure and time required on any given day.  Or should I say, any given night?

Gardening in the twilight is a peaceful thing.  Once the smell dissipates from the DEET-laden bug spray (sorry the herbals just don’t work with me; I’m the kind of person who gets bitten through my clothing!) I move fearlessly into the night.  I can’t see the spiders so they must not be there, right?  My pant legs are tucked into my socks and my head and arms are usually covered too.  Our German Shepherd pup stands guard on bunny watch until I can re-spray the rabbit repellant on a few key perennials.  The weather is cooler plus I know my yard well enough to feel what I cannot see.  Besides, this is the time of day when I feel the best.

I did make dinner for my hubby and myself and put it in the frig for later.  I started washing our sheets again to try a new remediation technique for any lingering mold in hopes of preventing seizure attacks tonight.  The only problem is that the heat in the dryer needed to be re-set and Steve wanted to go to bed early, before the bedding was dry and available.  By the time he came to tell me about wanting to go to bed, some of the sheets were still damp and I was too dirty/mulchy to come into the house to figure out a “Plan B” for him.  I simply had to keep going outside while I could go.  Turns out he figured out an alternative sleeping solution and I continued my evening project:  mulching in the dark!

So I gave in to temptation and finished mulching the front yard at 11:30 p.m.  The lack of light didn’t bother me much and I doubt I messed it up too badly.  Somehow the smell of freshly died dark brown hardwood didn’t bother me either.  My headache got better.  I guess it was meant to be?  Yes, of course, that’s it.

There are two more flower beds and four trees that need the borders re-dug.  I’ll have to get to that soon, to get the areas mulched and my truck bed emptied before the rain storm predicted for the end of the week.  Lord willing, I just might be able to do it.  Only problem is that most of the remaining areas are beyond the reach of any outdoor light source.  I may have to bite the bullet and work during the daytime.  No problem.  Maybe I need some really dark sunglasses?  ;J

What you didn’t say I’m glad I didn’t hear

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Lyme myths posterWhen someone says to me, “you look good today,” I’ve decided to simply take that as a compliment.  The cynical alternative would be to question the intent of the person and wonder if he or she is thinking one of the phrases in the poster above.  Is he or she wondering if I am really sick if I am able fix my hair and wear make-up one day in the past week?  No one sees me when I don’t feel well because I don’t leave the house!  Oh well.  As a friend of mine named Carol used to say, “it’s better to just leave it alone.”

When someone asks me if I’m back to work yet, I’ve decided to say that, “getting well is my full time job these days.”  If the person probes further, I’ve decided to disclose that I spend 16 to 18 hours every day in health-related activities and appointments.  That usually brings silence so I quickly change the subject to his or her job or other  primary role in life.  My husband advises me that people like to talk about themselves and usually have a great time with you if you ask a lot of questions about them.  I do enjoy getting to know others so his approach works well.

When someone asks me how I am feeling, I’ve learned that a quirky response such as, “below average,” “stable,” “not as well as I’d like to,” or “I’m having a better moment” works well.  I rarely feel well (or if I feel better at the moment it is likely to change within the hour!) so it’s tough to give the truth:  a negative litany of symptoms that has gone on for 1 1/2 years!  This crap-ola-ski is likely to continue for awhile so I’m going to pace my answers.  (I told you I’m Polish right?!)  I appreciate the question, acknowledge it and turn my attention to the other person.  It’s pretty clear when a person cares for more information and sweet when this happens.

When I do get to share a little more of my story, I try to end it with gratitude.  There is always something for which I can be grateful, for which we all can be grateful.  Today was a day that stunk until about 1:35 p.m.  The noxious symptoms persisted without a logical reason even after a post-treatment nap plus an additional rest period.  In the afternoon I moved slowly into extensive amounts of cooking my special diet and cleaning up this or that.  The sweats episodes did not diminish until later in the evening.  I am however grateful for two cool things that happened today:  1) crafting an amazing baked lamb cabbage roll casserole (gluten/sugar/dairy/chemical free as well!) and 2) completing the netting and support structure for the blackberry raised bed to keep out the birdie scavengers.  Cool beans.  Steve and I had a sweet evening together later after finishing our respective projects today.  Thank you Jesus!  Lord willing, I will worship His holy name tomorrow at church . . .

Recovery from a long-term illness thang isn’t for wimps you know!  Most people give up, settle for less, walk away from their faith in anything or anyone, become bitter and isolated, or worse.  I choose to trust that this journey will not be wasted, that the Lord will use it for His glory if I keep Him out front, and I exercise some care in my speech and behavior.  Rejoice if you see me out working in my garden!  I’m probably sweating bullets, nauseated, dehydrated, and weak but getting out into the world anyways.  We all know what it is like to have to carry on with life when we simply don’t feel well, don’t feel like carrying on with life.  I just get it more often!  Eeek.

DSCF7968

Ahhhh.  That’s better.  Happy Spring y’all.

The 8 Colors of Crayola Poster Markers Revealed

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Staying on track during the recovery from a chronic illness requires faith in the Lord for sure.  From there are the little strategies that keep me sane like writing in a treatment journal.  With so much going on from ever-changing meds., supplements, Rife programs, OTC remedies, nutritional strategies and the symptoms that follow, I would be lost without my handy Crayola Poster Markers!  This also helps during appointments with my LLMD when he asks about the course of illness and treatment responses (or lack thereof).

Here’s my simple color key that helps me on track:

  • Bright pink = nightmares
  • Blue = headaches
  • Orange = tic or seizure attacks (thin line for tics; bold line for attacks
  • Yellow= new treatments
  • Green = pain, burning, movement anomalies
  • Red = overall sickness, sweats
  • Purple = new stuff
  • Brown = elimination, detox

Then there’s the traditional yellow highlighter = Beam Ray Rife Treatments and Duration

So there you have it.  I’m on my second box of markers and the green one is running out of ink again.  I thought it would be the orange marker pooping out first but it’s got the staying power I did not expect!  So glad the bright pink and purple ones haven’t seen any activity for the last month.  Those colors are best portrayed in my garden right now, thankfully!  I got to retire the brown one a couple of months ago too.  I’m sad that the blue one gets used most days and especially since physical therapy ended 2 weeks ago.  I had improved and needed to use the blue and green markers less when P.T. was weekly but the insurance company doesn’t want to play nice with my Crayola buddies.  Geez!

Crayola poster markers

One order of gratitude coming right up!

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DSCF7927You all who are healthy out there listen up:  you got it good!

I finally had an evening that was nearly normal for most of it and it was indeed good!  Celebrating the wedding of the son of some friends of ours seems like an ordinary part of life to most of us.  The story went  like this:

We met our friends’ kid as a teenager, he fell in love and 3 years later, we were invited to a magnificent wedding banquet in the quaint Heritage Barn out in the country!  My husband Steve and I gratefully got one of the few invitations to the wedding.  We enjoyed holding hands together during the ceremony, gazing deeply into each other’s eyes from time to time while reminiscing own wedding vows not too long ago.  Shortly thereafter we were seated at our assigned place setting in the adjacent hall; a lovely table arrangement of hydrangeas nearly blocked the view of the other guests yet set the stage for a candlelit dinner as night fell softly outside.  The food was delicious and probably even tasted better because of the 3 -piece string ensemble filling the air with classical genre fit for a king.  The newlyweds smooched with a ring of a cow bell and as the mother of the groom squirmed.  All was well with the world.   White-on-white flowered wedding cake followed for the guests in the dance hall, followed by traditional ballroom dancing and some rip-roaring square dancing too!  The building was a refurbished barn so ’tis fitting to end the magical evening with barn dancing for young and old alike.   The couple later departed through a canopy of floating rose petals then drove off in a “smart car” just large enough to contain her wedding gown!  The night ended as the full moon shined through the thin cloud cover of the crisp evening sky.  Congratulations Brock and Hannah!  Your new life together has begun.

On the way home I realized that only once during the entire ceremony and reception was I aware that I am battling a devastating disease that could take years to beat.  Only for a moment did I wonder if I would find anything to eat from the dinner buffet that would match my Candida Diet requirements; the al dante’ green beans and baked chicken breasts would satisfy my hunger just fine.  Only once did I leave the dance hall to retreat to the stone fire circle where a bonfire covered me with as much warmth as my coat might have but it was in the car parked somewhere in the field beyond.  Only once did I wonder if the music was too loud for me only to realize that I would not be having seizure attacks upon returning to the car at the end of the evening.  The usual noxious after-affects of too much sensory stimulation, having not enough food that I could eat, smoke from the bonfire, sitting in an old restored building, and being out late would not bother me very much at all.

Wow.  You who are healthy and never think about such things got it good!  And tonight, so did I!

Thank you Jesus for an edifying wedding ceremony that focused as much on your sacrifice and saving grace as the wedding nuptials of two of your precious children.  Thank you Lord for working out so many details through the work of so many people and your Holy Spirit to bring such a lovely wedding ceremony together for all of us to enjoy.  Thank you my Jesus for allowing me to experience the wonderful fellowship of our friends in Christ as we celebrated this wedding tonight.  I am humbled and grateful for this afternoon and evening.   This taste of goodness reminds me of Your goodness.  It was and is just the right encouragement I need to keep going when the times are more difficult.  For your glory and in Your name I pray.  Amen.