This One is Real and Raw and Not for the Faint of Heart

I hesitated about sharing this blog post because it's painfully personal, humiliating, and vulnerable...But, the purpose of this blog is to share my life, to reflect, to relate to others who may be going through similar situations, to be my true self, and to show that through my writing.  So here it is...

It's Monday morning as I reflect back over the weekend.  It was a bad day Saturday, a REALLY bad day Saturday.

My husband's extended family had a family reunion at a nearby recreation area, and my daughter really wanted to go, to meet family she hadn't met, to see some of her aunts and uncles.  My stepson, his wife, who is a very close friend to me, and their 4 kids were also going.  It sounded like such a nice time, just spending the day together, seeing the kids and catching up; however, we all knew I couldn't go.  

First off would be the 20 minute car ride, which meant my edema would kick into overdrive.  There was no way I'd be able to walk any distance to the picnic area, so we'd need my wheelchair.  But, having never been there other than driving by, we weren't sure what the situation was as far as surfaces for a wheel chair to roll easily across to get around the parking lot and picnic area.  Then there was the restroom situation.  Having lymphedema means lots and lots of fluid throughout my body, which means daily diuretics, which then means many, many trips to the bathroom, which are urgent and often without warning.  The website stated "primitive restrooms" which sounded a bit concerning, and where these were located and how accessible they would be, we didn't know.  What we did know was that I am unable to walk more than 50 feet without being winded and needing to take a seated break before my legs give out.  

So, with lots of tears Saturday morning, as I grieved yet another thing I was unable to do with my family because of Long Covid, I texted with my daughter-in-law as we discussed what we should plan on our families taking along as far as potluck items, folding chairs, etc.  The tears continued as I helped my husband and daughter get things organized to take with them, and wished them safe travels, to send my best to the family, and to have a great time.

Once they left, I decided to tackle the job of tidying up and organizing my kitchen because this is something important to me, and something I knew would bring me some peace and a sense of accomplishment.  So, using the kitchen stool we purchased to assist me with being able to sit at a workable height, I loaded and started the dishwasher, put away some random grocery items still on the counter, cleaned out the refrigerator and organized it more neatly, and restocked the Kcups in our coffee area.  

While doing all this, I also decided to make me a small pot of alfredo pasta using packaged, instant noodles, a simple white sauce with garlic and cheese, and canned chicken breast.  It would be quick, easy, and could be simmering away in a small saucepan while I worked in the kitchen.  It had been determined over a year ago that I should not use the stove without supervision, but I didn't feel that I had really been needing direct supervision when cooking over the last few weeks.  My husband was always there, nearby, often helping me, being my "sous chef" as I cooked.  However, before my little saucepan of pasta was finally finished, and I could contentedly have a seat to enjoy my lunch along with a sense of accomplishment for all I had gotten done, I ended up with a burn on my arm from laying it on top of the hot saucepan lid I'd forgotten about.  I'd just set it down on the edge of the sink not 10 seconds earlier, but somehow forgot.  Burning my arm caused me to jerk abruptly, flinging pasta and sauce across the stove, onto the backsplash behind the sink, and down the front of myself.  So, I had one more mess to clean up, along with an arm to run under cold water, before ever sitting down to put my feet up, and eat.  This was my reminder as to why I wasn't supposed to use the stove when I was home alone...By the time I'd finished all that, my husband and daughter were pulling up, back home and ready to tell me all about the reunion.  

The evening was relatively calm as we watched a movie, had some leftovers for dinner, and relaxed after a long day.  Then it was time to get ready for bed.

I have been noticing some issues with swallowing lately, having this feeling as though my throat is constricted, so I began doing a little research on possible causes right before heading to the bathroom to do my nightly routine.  Multi-tasking is something I completely lost the ability to do when Long Covid set in, and has been a constant challenge for me over the past 20 months.  My mind was on what I'd been reading, and I was thinking about what the cause of my issues could be as I entered the bathroom and closed the door.  The next thing I realized was that I hadn't lifted the toilet seat before sitting down because my mind had been elsewhere, still going over possible explanations for my strange swallowing issue.  It was too late to correct my mistake.  (Remember my comment above about diuretics, urgency, little warning....?) 

The next 30 minutes consisted of me sobbing hysterically, a mess all around me, and my husband and daughter both taking turns trying to talk to me through the bathroom door, but me too distraught to form words they could even understand.  When I finally let my husband in, he immediately told me to just take a nice, long bath while he cleaned up and took care of things.  When he'd finished up, he headed to bed, leaving me to soak in the tub and regroup.

After an hour of soaking in a warm bubble bath, I had calmed down a bit from my humiliating mishap, and began to stand up when I had the most excruciating charley horse attack my upper left calf.  It was so painful I couldn't even reach for my cell phone to text my husband for help.  I was literally frozen in agony for a solid minute, trying as hard as I could to push my foot flat against the bathtub to relieve the pain, before I could even move.  When I could finally feel a little bit of release, I texted my husband, and he came in, massaged my calf enough for me to be able to move my leg without the muscle balling back up again.  This is just one more symptom of lots of diuretics, even with many, many potassium supplements taken throughout the day...

That charley horse showed back up, thankfully in less aggressive fashion, twice more before I was able to climb into bed and put a fork in one seriously awful day of Long Covid rearing it's ugly head at me.  But, I made it through it, and luckily, yesterday was a bit better than the day before...I can only hope maybe today will be even better yet...