I am currently staying in a place with good public transportation (by American standards). Not only are the metro stations abundant, the lines are also timely and run across the whole city. There is a stop half a block from my home that takes me to large grocery stores, banks, and other errand locations. Before planning my time here, I had to carefully analyze this urban layout. It had to meet my mobility requirements and provide enough amenities so that I could receive timely deliveries when I couldn’t leave the house.
This overly planned style is not how I use to decide my moves and travel. For most of my adult life, I would go when and where the mood struck. A new job across the globe, a vacation to a rural beach town, and a weekend adventure in a busy city center were all a part of my vibrant life. In fact, I probably became a bit too comfortable being nomadic. Moving and changing were my default way of being. Of course, eventually that lifestyle no longer fit my body’s needs.
While I still fight routine and monotony, I have grown an appreciation for “sameness”. Having unpredictable diseases means that following a routine and specific methods for daily tasks provides a light barrier for surprise flare-ups. It goes against my instinct and upbringing but having some control over the environmental triggers in my life help mitigate my more disabling symptoms. Unfortunately, I’ve always tended to attract Murphy’s Law and general craziness as I go about my life. I use to just roll with it but everything is different now. Sometimes it’s humorous. Other times it’s frustrating and painful. Yesterday was one of the painful days, really painful.
I had stored up enough energy (and eaten through my refrigerator) to go grocery shopping. This was a go to the big store kind of shopping trip. I planned on one bag worth of stuff since I was taking public transport. Upon arriving at my bus stop I noticed it was closed. Not a huge deal since there was another stop just 2 short blocks away. Thankfully, there were seats on the bus so I rode the quick 10-minute trip in relative comfort. There were no problems getting off the bus, walking the half block to the store and getting a semi-heavy bag of groceries. Walking to the returning bus stop, I noticed it was temporarily closed. I took a deep breath and prepared to walk the 3 blocks up a slight incline to the next stop. That stop was closed as well. I put down my bag and took a look at the transit tracker to find out why the stops were closed and which alternate locations were listed. There was no information about the stops being closed but the temporary sign noted that the next stop was just 2 blocks away. I was uncomfortable but had already paid for a round-trip fare so I decided to walk those final two blocks. As I went along I kept switching my bag between hands. Occasionally I would also use both arms to hold it in front of me and give my hands a break. I got to the bus stop and, of course, it was closed. At this point, I wasn’t far enough from my home to justify calling a ride. I also, have a terrible habit of pushing myself past my breaking point if I can see the finish line. So I hoofed it. I put my hair up, head down (so I could see what I was stepping on as my feet went numb), and thought of a midway point where I could stop and get an iced drink to raise my blood pressure. I made it to a café, got my drink and kept moving. If I stopped for too long I knew I wouldn’t make it home. As I crossed my threshold, my arms were shaking and my feet were screaming. I threw my groceries in the fridge and lay down.
Now I know a 20 minute walk with a bag of groceries wouldn’t be a big deal to most people. It would not have been a big deal to me 7 years ago. Unfortunately, now I live with a busted body and this is what that little unexpected city hike did to me. That night, it set off a massive migraine and left my feet numb with stabbing pain shooting through my legs and hands. My face flushed for hours and pressure hives appeared on my hands followed by an uptick in my nightly hives. The next day, I had to crawl out of bed. I had to hoist myself onto the toilet and had to sit in the tub to take a shower. I couldn’t wash my hair, as my fingers were useless. I couldn’t stand to make food so I didn’t eat and spent nearly the entire day lying down. Every move was agony and straightening my arms or legs felt like trying to uncoil springs. My knee had hyperextended during the walk and toes were bruised.
Have you ever worked out so hard that your legs were jelly and your abs ached when you laughed? I dream about that type of pain. That good muscle building burn and humor inducing leg wobble. If only my pain was the result of a strong body functioning. If only my symptoms were temporary and disappeared by living a healthy lifestyle.
The reality of living with chronic disease is that some days are just really bad. They remind you that of what you can’t do and what you miss doing. Those days pull the breaks on your momentum and positivity. They drop a cloud over trying to embrace your new self. They define your relationship with life and take color out of your day. Those days try to break you.