A Bad Day

I recently had a really bad day…I was going to say it was the worst, but with ALS I have come to realize that things can always get worse. I used to use that phrase so loosely- I have had the worst day!!  Now I have to wrack my brain to remember what I considered to be a bad day before, and by before I mean prior to ALS. Was it a day when the kids were crying and I felt like they might never stop or perhaps it was because of an argument with a loved one? Maybe it was the time in university when my car’s clutch snapped in the middle of the intersection or when I was skiing and flew out of control through the soft (thank goodness) fence that was right beside the chair lift lineup? Lol. Not the best days for sure, but nothing compared to now.

On this particular day I woke up very tired as I was awake most of the night with nerve pain in my foot. By early afternoon I had to go to the recliner as I was too tired to even sit at the table. I sat watching people pass by the window out for a lovely Spring walk or jog, and I got weepy. Why can’t I be out walking? What makes these people more worthy? It’s not fair.  It was such a warm, sunny day I decided that I would take a quick trip outside to hopefully improve my mood. So my dad came over and got me in the wheelchair, and Olivia pushed me around the side of the house.

The warm sun felt amazing and I was happy that I had ventured out. The tranquil atmosphere was short lived however, as several wasps started buzzing around. Olivia swatted them away and all was good until I felt a bug crawling on my ear and making its way inside. I absolutely freaked out and poor Olivia, thinking there was a wasp on me, took off running while pushing me, to go get my dad’s help. If I hadn’t been so frightened of the bug burrowing deep down into my ear, I would have laughed at the sight we must have been. Thankfully, by the time we reached my dad’s workshop the bug was gone. Two ants took its place and Olivia had to brush them off my leg and arm. Not being able to get insects off of your own body can produce a fair bit of anxiety. I was beginning to get too warm; regulating temperature can be difficult in ALS. When the wasps returned, I was more than ready to go back inside.

On the way in I could not lift my head up straight, it kept falling forward. Who would have ever thought that one’s head could be heavy? With a loss of neck muscle it is. I got into my kitchen chair, my head still slumped forward. My neck was locked. This had happened once before and resolved itself after about twenty minutes. I was over heated and panicky, which made my breathing difficult. I started crying, which is something I now try to avoid as I can’t blow my nose or clear my throat and so the secretions feel like they are drowning me. Eventually, between air conditioning, a cold cloth on my face, water in my feeding tube and a neck massage from Olivia, I began feeling “normal”. Grateful that my parents were here to help me and for Olivia’s ability to add humor to any situation, even this one.

So that was one of my bad days living with ALS. Oh, what I wouldn’t give to have the bad days I had before. 😉

Thanks for reading…better days are ahead! xo