Tag: coping with chronic illness

Kermit the Frog Here

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Kermit

James 1 reminds me:

2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.

These words have guided me for years during many trials by fire and extreme life makeovers!  As I have said many times this past week:  “If I did not have my faith in Jesus Christ, I’d be lost.”

Wow.  That is a testimony of sorts I guess.  I give the Lord credit for the presence of mind to utter those words after seizure attacks during various health appointments and when communicating with non-believers on Lyme-specific Facebook pages.  I said it because it is true.

To God be the glory for the things He hath done in my life, for the good that may come.  I’m going to hang in there for, as Paul Harvey put it, “the rest of the story.”  Or better yet as the apostle Paul wrote when bound in chains in his letter to the Philippians:

6 being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus (Phil 1).

Now that’s a promise for which to hang in there, eh?  Turn to Jesus and He will carry you too!

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.

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.

Enough Weirdness Already!

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I realize the last posting was a bit weird.  Please forgive me.  This is how my mind works sometimes:  trying to be funny, sincere, and well, express myself in some creative way.  The result this week:  an odd blog posting!

And now for today.  The Lord is laying on my heart the reality that I may not be able to return to my profession of occupational therapy.  To work in healthcare requires an incredible ability to serve others under stressful circumstances; work in environments laden with noxious smells, microorganisms, temperature and sound variations; meet a wide range of physical demands from extensive sitting to heavy lifting; and to continuously learn, apply, and re-evaluate extensive amounts of technical/scholarly information on a daily basis.  This is impossible with the ongoing neurological complications of Lyme Disease and Chronic Inflammatory Response Syndrome.  On the positive side, the need to be adaptable, resourceful, and creative in OT has graciously remained during this time of illness.  These skills have been instrumental in helping me cope with the chronic illness that continues.  The other skills come and go.  Maybe they will come back?  Who knows.  This is a big realization.

Thankfully I do not need to make a decision about my career this evening!  (However I do keep my licensing and continuing education requirements current, you know.)  The Lord is also laying on my heart my next project within my home business, Trinity Jewelry by Design, so I will focus on that for the next few months.  I’m thinking of developing some sports-related products that may be attractive to the kayak paddling community.  If some additional research looks promising, I may move forward quickly now that it’s canoe and kayaking season in much of the United States.  I do continue to learn a lot about using the internet, my online shop, networking, and the administrative requirements of a home business.  Watch this blog for new developments as you will be among the first to get the news!

Since Steve and I never really know the stability of his employment as they undergo more changes this year, we remain open to the larger issues of where we will live and what work will carry him into retirement.  We are not concerned about these types of unknowns, really.  It would be challenging if the Lord leads Steve in any career moves at this time in our lives yet we both have experienced successful job changes and relocations under a variety of positive and negative circumstances.  Jesus is already there, ahead of us in space and time with a plan for our lives.  So glad for that!  For example, I lived in the suburbs of the 3rd largest city in the US (Chicago) before I moved to marry Steve in the Fort Wayne, Indiana area.  In a city .04% the size of the Chicagoland area, I found the best husband, best doctor, best home, best quality of life, and best Bible teacher that I have ever had in my life!  I had no idea all this was possible!  Wow.  God is amazing and provides for our every need no matter where we are on the map.  (Proverbs 3:5-6) Very humbling, for sure.

So enough of the weirdness.  Enough of the need to know.  Enough of the need to control this or that.  Enough of the worry and strife.  I am going to stay in the moment and enjoy the crazy thunderstorm outside no matter what affect it may have on my illness or even if it blows out the power and this blog is lost forever.

I think I will be prudent and sign off now . . .  :J

It makes no difference to a dog

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DSCF5182

I finally got off the couch today around 1:00 a.m.  That’s when I started to feel better and realized that a few more newly installed plants still needed watering in the yard.  My husband, Steve, had graciously watered a few before he went to bed at 11:30 p.m. when it became clear that it was not going to rain this evening.  Yipes!  I don’t want to lose the new seedlings, annual flowers, bare root starts, transplanted bush and perennials that I was miraculously able to get in the ground these past three weeks.  And now in the wee hours of the morning, I am grateful that it makes no difference to my dog what time we go outside to the garden.  Anytime, any weather, any occasion, she is ready.  I wuv my pup!

I am so glad that it also doesn’t appear to matter to my Jesus what I am able to accomplish in a day.  While I look around and see the paper towels that need replacing in the kitchen, the crock pot that has been running for a day and a half that needs to be put in the refrigerator, a full load of clean dishes in the dishwasher that need putting away, and so on, I am acutely aware of all that I am unable to do.  Ah, there’s that phrase from my 12-Step Program days:  I am a human being, not a human doing!  I am perfectly o.k. just as I am, sitting on the couch for most of today.  Now I also know that there are other issues such as stewardship, working as unto the Lord, and using my spiritual gifts to serve others unto Him.  Those tasks will be there another day.  Today was a low key day.  Today was a sick day.  And today is over, yeah God!

I wonder what tomorrow will bring?  One thing appears to be certain:  Elle will be ready to go, available without needing to stop and take care of anything else but please me, but be with me.  Oh do I ever love like that?  I pray that if I am able, I will love like that too, with a smile and a spring in my step.  Maybe I’ll even get to help out at the plant sale at our local Cooperative Extension Office.  Wow.  That would be fun!  Regardless, I will be o.k. It makes no difference if I fuss about it either.  As for right now, it’s time to get some sleep!

Matthew 6:25-34