Perfect Day – Good Times, Good Friendship, Fears Battled And Won


Today I needed a “health holiday” – just a day to think about something OTHER than healthcare management.  So I took a “health holiday” and I had a grand time.  I really did! 

I’ve been on a new schedule lately with almost every minute from 7am-11pm scheduled throughout my day.  It’s extremely rigorous and requires a ton of self-control, but God is providing the energy I need to stick to it, and I’m exercising faith that He will in fact provide the strength and energy I need as I seek to do what I believe He is calling me to do each day.  I’ve been incorporating more activity, movement, and low-level exercise into my daily life and I’m being very strict about bed and wake times, even when I don’t sleep well at night.  Until today it’s been just hard.  Good, but hard.  The good news is that I’m definitely getting more done and I’m doing much better at keeping up with house work. 

Today was different, however, because I got to see a bit of the payoff of sticking to my new schedule – I had some time to have FUN.  🙂  I put away the work and mindfully enjoyed several activities I’ve not done for months, others I had not done for years. 

This morning I got an early start at 7am.  The laundry was hopping and dried by 12pm, the sink was shined to perfection (because it made me happy to SCRUB my sink), I had enjoyed 30 minutes of quiet time with the Lord by 9am, and I had finished my desensitization exercises by 8:30am.  I was ready to start my day.

My friend Mike came over around 1:30pm and we decided to go do something fun.  So I suggested we rent a canoe and bobble around a lake for a while!  Mike had never been in a canoe before and was pretty apprehensive, but I’ve been in a few canoes with various folks…not all trips ended up dry (nor poison ivy free – long story!), but I didn’t tell Mike that till later.  🙂  When we got to the park, Mike plunked down the cash for a one hour canoe rental and I used my rolling walker to manage the sandy shore.  Mike begged to rent a motor boat.  “No, we don’t need a motor boat!” I said, “WE ARE the motor!”  Looking down at both our bellies, I added, “We could both use the exercise.”  I won.  🙂  We got to use a nice canoe in good condition.  The wind was pretty strong today and it was cool on the water, but we wore jackets under our lifevests and there were NO BUGS – my kind of PERFECT day to go canoeing.  Once in the water, we went all kinda which-ways, mostly in circles for a good half hour, and I laughed a lot.  We took “drunken sailors” to a whole new level and should have received a DUI for our canoe driving.  When the boat’s angle matched that of the waves, and the wind and waves were rocking the boat, Mike was concerned, but I was laughing and having a great time.  Eventually Mike loosened up.  “So, what do you think?” I asked, “Do you like it?”  He smiled, “Yeah, I like it…but we shoulda got a MOTOR!!” he said.  I rolled my eyes and shook my head.  I guess next time we go boating, we’ll have a motor on the back.  LOL.  I hate taking the easy way out of anything except cooking!  I was really glad that Mike enjoyed the canoe too.  After an hour, our arms were tired, so we decided to park the boat and go for a walk.  The fresh air was soooo good to my lungs; it filled me with a little burst of energy I had not felt in a long time.

The trail was packed mulch so it was soft underfoot, but not too soft, and it provided a good variety of walking surface for my legs.  We walked and talked, which helped distract me from the pains in my legs.  I couldn’t go real far but just the fact that I was walking with my walker rather than using my wheelchair was an encouragement to me.  It was wonderful to move, to breathe fresh air, to see the turtles, the heron, the black birds, the fish, the trees, the blackberry bushes, NATURE.  People at the park were fishing, rowing boats, having baby showers and parties, walking briskly, taking graduation pictures, and reading books. 

When my legs were beyond “done,” we headed (very slowly) back to the car.  It felt so wonderful to not have been thinking all about the things that needed to get done on my list at home.  I had spent a few hours mentally separated from my to-do list. 

Mike said he needed new pants, so we went to a thrift store on the way home.  I was glad I had my wheelchair, as my legs were toast.  Didn’t find anything, but we’ll have to try another day.  Back in the car, we turned up the music and sang.  We love singing as we drive.  So we stopped at the grocery store and Mike ran in to get a few items he needed while I conserved my energy by staying in the car.  He came back out with a bunch or roses for me, in celebration of my birthday!  They are pink and white – and pink is my favorite color.  I love flowers.  We sang again as we came home. 

Once home, I arranged the flowers in a vase, wishing I had better flower-arranging skills.  They smelled sweet.  Mike left to give me some time to rest and I thanked him for being my “person of the day” and for making it a special day for me. 

Then I turned on my radio to catch my favorite radio program, A Prairie Home Companion, which airs on Saturday nights.  I don’t watch TV so radio is my main source of news, music, and entertainment.  I love singing and moving to the music.  With a TV, I have to be stuck in front of the tube to take in the “entertainment” and I find the confinement less than appealing. 

I ate a snack and I’m now considering retiring early for the night so I’ll be well-rested for church in the morning. 

My pain levels were manageable today, and even though the pain was riding on my shoulders every moment, I had a good time doing some things I’d not done in years.  I was proud of Mike for his naive trust of my mariner’s skills, and glad we were able to enjoy this lovely day.  It was a late birthday celebration but greatly appreciated. 

So, yep, I’d say it was the Perfect Day!  😀     …without a motor.

Will I pay for it tomorrow?  Probably. 
Will it have been worth it?  DEFINITELY!
That’s why God made Sundays – a day of rest – and I may just crash tomorrow with pain, but I will have a smile because I now have some good memories of this weekend to refuel my tank with hope and optimism (it’s been low for a long time).  It’s the little things that really do make me smile now.

I had pushed myself past some of my fears and went out and did something fun.  That’s a huge accomplishment in and of itself. I was afraid of how my leg would react to the cool air and the wind while in the boat; it’s not like I could just get out quickly to find a hiding place if the wind hurt too much or if I accidentally knocked my leg with my oar (I’m not known for gracefulness in sports!); I’d have to find a way to grit my teeth through the pain without squirming too much until we could get back to shore. 

I didn’t know if there was gluten on the oars from past picnicking canoers, but I resisted the temptation to scrub down the whole boat and both paddles with sanitizing hand wipes before touching.  Instead, I “sanitized” all of the above with an extra prayer.  “God, if there’s gluten anywhere here, please keep it AWAY from me or keep me from reacting to it!”  Then I proceeded to baptize my oar by immersion (forget sprinkling!)…a few times.  Problem solved. 

I was also worried about my compression stockings getting wet while paddling because I’ve been in the grocery store after getting rained on when my legs were wet, and the movement of my wheelchair creating a little “breeze” against my wet legs was AGONIZING (especially in the aisles with refrigeration where the air temp is colder), so I didn’t want to get my compression stockings wet and find that the wind was intolerably cold.  I just decided if it happened, I’d find a way to deal with it in the moment rather than planning out my potential reactions to all of these possible-but-not-happening-right-now situations. 

I also didn’t know quite how I was going to get in or out of the boat without landing on my face, but I just went for it like I usually do and it turned out okay.  Actually, a very nice woman saw us coming back to shore and she pulled our canoe in for us!  Mike later returned the favor for another boat occupied by women…he told me it didn’t feel like much of a favor; he likes the ladies.  🙂  I flashed him my crooked, “amused” smile. 

The fact that I faced these fears to have fun, much as Mike faced his fears of boating for the first time, made me happy.  Wasn’t easy, but it was worth it!  There are so many times, every single day, when other people (those darned “healthy people”!) simply cannot understand how much brain effort it takes to do ANYTHING when your body is constantly on the fritz.  For me, I’ve lived with both chronic pain, Celiac disease, and general exhaustion so long that I guess it’s my normal state of affairs – I am CONSTANTLY thinking about my limits for the day, weighing out which activities or chores are worth giving up my limited energy resources to accomplish, PLANNING for potential problems so “disaster” can be averted, weighing the pain repercussions, managing low blood sugars and gluten cross contamination issues….  It never ends; even on my “health holidays”.  Yet the ability to get out and face those fears, successfully manage the maze of balancing my health needs with my activity wants (having FUN!), and do so even though there’s a perpetual list of medical-related tasks to be done sitting on my desk at home, is something that can make me happy because it means I came as close as possible to having a “normal” experience. 

I doubt that those who don’t spin such plates can understand what a huge accomplishment this is in and of itself and can’t fully join in my joy over this accomplishment, as I sometimes just come across as “weird” because I do things differently in my efforts to survive in a world that’s hostile to my body.  

For example, I don’t like shaking peoples’ hands, especially when they have just been eating a cookie or they’ve just applied hand lotion due to gluten contamination….and avoiding doing so is socially awkward.  If they see me 2 minutes after our interaction I’m likely to be whipping out the hand sanitizing wipes and wiping both my hands and my wheelchair down.  What they don’t see is how SICK I get from a few molecules of gluten and how anxious I feel about shaking their hand in the first place, and the 50 prayers that are being prayed after I shake their hand and before I wipe myself down.  They don’t know that I really want to run away and wipe down RIGHT THEN AND THERE before we finish the conversation (if not avoid the whole handshake altogether), but I am resisting the intense urge to do so because I love that person and care for them. I doubt they’d see the love I have for them because they’re more likely to find it odd that I am wiping off their handshake as soon as I am appropriately excused from the conversation (and can find a place to wipe without being obvious). 

In church, I sit on the end of the row of chairs because I sit in my wheelchair.  So I’m basically sitting in the aisle.  People entering the aisle of course have to pass me.  I’m terribly afraid of anyone touching my left leg in particular, and I often only have a second or less to pull my leg back and protect it from someone who comes up beside me to enter the row.  The brush of a skirt against my leg is all it takes to set off a severe pain response which can leave my nervous system in overdrive for hours afterwards.  I can touch my own leg to some extent, but others touching when I cannot control the sensory input is a totally different situation.  Unfortunately, these people see me react to their nearness in an overly exaggerated way – I just about jump when I realize they are crossing my path, tuck my leg under, and I can bet you have I have a look of doomsday-like fear on my face because I’m anticipating the possibility of that touch that sends my pain to the moon.  Ah, if only they understood!  It’s not that I’m overly reacting…it’s that the pain caused by the brushing of a light touch really is THAT BAD and if they felt it too, they’d react at least as strongly as I do.  It’s a miracle that I am even in church, around other people, risking that my legs will get bumped by kids, touched by a woman’s skirt as she passes, nudged by the ushers as they “pass the plate” (which then becomes “pass the pain”).  IT’S A MIRACLE I LEAVE THE HOUSE AT ALL!

So, these little victories are often mine alone to savor.  And savor them I will!!  Today was the perfect day and I plan to hold onto it in my memory for as long as I can.


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