Chronic Illness and Travel: My first trip

Tribune Bay, Hornby Island. Getting to Hornby requires ferry from Vancouver Island to Denman Island to Hornby. I got to ride “4 Dead Aliens” (what this entire trip was predicated on), eat ice cream, and then jump in the ocean. Best. Day. Ever!

I took my first “real” vacation since my lupus journey – and health crisis – began. For nearly two weeks in May, Adam, Shasta, and I explored the Sunshine Coast, hopped over to Vancouver Island, and finished up in Manning Park in BC. With a goal of doing as much mountain biking and hiking (check out my Sunshine Coast Trail Trip Report here) as possible, I had no idea how my body would hold up and, of course, Adam was concerned for my health.

I think you need to see more Shasta

Our first talk of vacation was tentative planning. However, when my kidneys received the “all clear”, we realized that my health situation had definitely – measurably – improved. I still need to be careful but returning to an almost normal lifestyle is finally beginning to emerge. Attaining pre-lupus levels of activities may still be possible but, prior to this trip, we just didn’t know how I would react to the combination of increased activity plus being away from home.

Especially in these beginning (learning) stages of lupus-management, more planning than we normally engage in would have to occur. It was a matter of sitting down and thinking through what we thought my limitations would be and what are the priorities of this trip were. Do I want to ride most days? Or do I want to ride one epic, long day but have to take a few days off? Trying to identify the balance without having a clue where the weightings should be is difficult, entirely subjective, and a matter of “trial-and-error”.

It’s an odd combination of planning and remaining flexible. I have to both meticulously schedule for what is coming up in an attempt to balance my energy; and yet, I must remain flexible enough to react to the daily (or hourly) changing circumstances of my health. For this trip, it was necessary to research the trails, map out potential routes, and have loose ideas for Plans A, B, and C.

  • Plan A: Feeling excellent, ride any trail I deem feasible for my fitness level!
  • Plan B: Feeling tired by not exhausted or sore/hurt, ride easy/shorter trails and Adam do a longer ride later.
  • Plan C: Feel like crap. Nap, eat chips, watch for birdies, nap some more. Shuttle/pick up Adam from his ride.

Pacific Bleeding Heart

We both knew I would not be able to handle riding every single day. The required downtime became a factor in the planning. Camping had to have some amenities (free/backroad camping wouldn’t be very enjoyable if I had to just sit in the bush by myself all day) and it would be nice to have easy access to a basic trail system. Even when I’m experiencing my lowest of energy days, I still need to have a walk. The walk helps muscles from getting too tight, sore, or stiff. On these days, a simple stroll is is best and I take the opportunity to learn about local flora, take photos, and check out the birds and other wildlife. Everything sloooows down but the important act for me is to allow myself the opportunity to incorporate these slower days in my week.

Having this discussion in advance about expectations and realities was helpful for both of us. We knew that I would have to take a few days off so Adam was prepared to either take those days off with me or ride on his own. (As it was, we ended up having friends join us for the bulk of the trip so he never ended up riding alone). We ended up having a great time and I managed to have 6 days of riding, 5 days of hiking, and 3 relaxing days.

As we came back to the mainland, the last few days of the trip had remained “undetermined”. It was dependent on how I was feeling and if I was feeling poorly, we could head home. An overnight visit with family and we decided to check out Manning Park (we were pretty sure some of the lower elevation hikes would be open). An 18 km hike up to the Windy Joe Fire Tower plus a stunning walk around a tranquil lake ended our trip.

With our success on that trip, we have now confidently planned a few more for the summer. My biking confidence is building, as is my fitness level, and although I don’t anticipate my health regressing to last year’s levels, I am still careful with my plans.

Are you, or someone you are travelling with, experiencing a chronic illness? Here are my lessons (thus far!):

  • Count your medications and bring extras (just in case), keep together in a sealable but accessible bag. Your routine is different so set alarms if need be.
  • Expect everything to take longer! You either need to take extra driving breaks to stretch the legs or your physical fitness levels are lower. Just pad in some extra time in doing anything.
  • Identify your expectations (and those with you) and be realistic about your limitations.
  • Plan…but know this plan may be thrown out the window so bring a book (or 6).
  • Embrace rest days/easy days. Read one of your 6 books.
  • ALWAYS TAKE JOY IN WHAT YOU CAN DO. There are people that are physically capable of less. There are people with fewer supports and resources. There are people who have it worse off than you. Appreciate everything you have and are capable of doing.

 

 

Cherry trees planted in commemoration of Japanese families moved to internment camps – Cumberland, BC

Lightning Lake. For my #birdnerds out there, I saw multiple pairs of (breeding) Barrow’s Goldeneye. For non-birders, there were duckies, lots and lots of duckies.

 

Out lunch a’top Windy Joe!

 

Windy Joe Fire Tower (retired)

We ran out of fuel on our last evening!

 

 

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