I am constantly learning. Every day and every experience is still new to me. It’s fabulous for living in the moment, but it also keeps my mind racing as I constantly exist in “problem solving” mode. Problems, you may ask? Simple things like: how far is the walk to the bathroom? Is there an outlet close for my POC (portable oxygen concentrator)? Is there a waterproof chair I can use in the shower so I don’t wear myself out just getting clean to start my day? I dropped something on the ground- is it worth the physical discomfort and lingering shortness of breath to bend over and pick it up or can it remain there for the time being?

My trip to Florida was my first time flying with my POC. Since I can’t be separated from my oxygen, I couldn’t use the body scanners and instead received a thorough pat down as well as a complete explosive check of my wheelchair. The process was very easy from my end and the officer was both polite and patient. Boarding early was a huge help, as it let me get situated without any extraneous standing and allowed me to get the pieces of my POC easily accessible. During the flight, I wore both my O2 and my mask (at the recommendation of my nurse advocate) while watching my battery closely. I was surprised how very dry I became during the flight, and when I tried to turn my POC to a lower setting to save the battery I found myself getting light-headed, so that experiment was short lived. This does make sense though, as when the plane is at cruising altitude, the air is thinner, so I’d need MORE oxygen delivered to stay at my same levels.

My wheelchair was conveniently checked at the gate and waiting for us when we got off the plane in Tampa. The tram ride was an adventure as we couldn’t find the brakes on the wheelchair but after reclaiming our checked bag, we found we had to go BACK on another tram to the rental car counter. Unfortunately, managing the chair, the carry-ons, POC, and the checked bag was far too much for Mama, so I put all of the smaller items on the wheelchair and tried to walk, pushing it myself and using it for support as a walker. In the end, this was not a sustainable method for moving any great distance. Using that “problem solving” I discussed earlier, we rigged up a way for Mama to push me while we jointly wrangled the bags. Seeing our fatigue, the kind man at the rental counter gave us an upgrade to a very comfortable and snazzy SUV.

After a short ride to our friends’ home in Largo, we greeted them and went inside just in time for my POC’s battery to die despite me using the car charger during the 30-minute drive. Thankfully I was now able to plug into the wall outlet, but I felt like that was cutting it too close. The advertised “9 hours” of battery life on the $600 extended battery is running closer to 4. This also became an issue several days later when Mama and I went to the pool for a spell. I found that being in the water allowed me to stretch and move in effortless ways that I have been unable to since my diagnosis. Despite wearing my nasal cannula and propping my concentrator nearby to keep it dry, I physically felt the most normal that I have in months. Realizing that my stress was low and my weightlessness allowed me to relax my breathing, I turned down my O2 flow – again to save battery- but we were both sad to leave when, after a mere 3 1/2 hours, I was down to my last battery bar. Again, it was a race against the clock to get out of the pool, get dressed, secure everything we brought and hobble back to the car before the battery ran out.

Lessons that this trip has taught me so far that I will use frequently:
*In order to be at an event or away from home for any length of time, I will require 2 more extended batteries. The four should be able to get me a solid 12-16 hours of “normalcy.” The range is necessary because it changes based on my level of activity. If I am walking, standing, or speaking in long sentences, I must increase my POC’s oxygen output and therefore shorten the battery life. As the point of the POC is to give me as normal a life as possible while I am able, I am typically doing some combination of these things to most thoroughly appreciate each experience.
*My typically challenging mornings have been significantly easier since coming to Florida, and the time it takes me to feel “normal” and ready to leave the house has decreased by 60%. Whether this is due to the weather, the temperature, or the propped-up way that I am sleeping remains to be seen. I’ll delve into these variables further in the coming days.
*Just because I have a handicapped tag does not mean that there will be any handicap space available. Funny thing about Florida- there is an abundance of senior citizens here and many of them also have handicapped placards. That means there are more of us vying for spaces. Getting dropped off nearest the entrance and waiting for my party saves a lot of energy and prolongs the enjoyment of my time out.
*Similar to juggling the four batteries, if I am going to do anything on back-to-back days, I will require an independent charger. Currently the batteries only charge when attached to the POC and the POC is plugged into the wall or a car adapter. This process takes 8 hours. If I had a long day out at faire, for example, I couldn’t go to a concert or food truck festival the next day because I wouldn’t have enough time to charge the adequate number of batteries overnight. This gives me pause when looking at my calendar and my bucket list of things to see/experience.

I’ve only been in Florida for three days so far, but they have been just lovely. The adventure has been enlightening, relaxing, and has offered some welcome reconnections. We are still coming up on the BIG reason for coming south and that will culminate in a weekend of righteous ridiculousness as the Righteous Blackguards play the Lady of the Lakes Renaissance Faire in Tavares, FL. Based on my recollection of the fairegrounds, it will be a litany of challenges between parking and getting to the proper stage. What I walked last year in 4-5 minutes, I am preparing to spend 45+ minutes accomplishing. I will report on my actual progress on my Facebook and Instagram pages over the coming days.

Thank you for following along, and always for offering your own tips and insights on how to cope/adapt.