I hate cystic fibrosis for many reasons and the inability to be spontaneous is in my top 10. Inability to just take off for a trip on a whim is also on that list. I love travelling and have been fortunate to do a lot of it all over the world. Now, unfortunately due to my decline in lung function and need for oxygen on flights and with exercise it has really put a hold on my travel plans. I usually go to Mexico every year, if not twice and those are OK, lots of planning but do-able. Planning a trip to Africa, Asia, or Australia is an absolute no go right now. I wouldn’t survive the flight let alone the different bacteria in different places. I don’t feel bad about it because I know my body couldn’t handle it at this moment but it does give me reason to be angry. CF really makes my world smaller and smaller. I don’t remember what breath-fulness feels like anymore.
When I travelled Europe, once flying from country to country and another time on a Mediterranean cruise I was incapable of just enjoying a moment. I would wake up and know that there would be obstacles that I will have to face, a set of stairs, a hike to get to a viewpoint, a long walk to a train station. I dreaded all these things that should be fun and exciting. I would just skip the stuff that was too hard and have my ex go enjoy it without me.
At Chichen Itza, he climbed the great temple. At the Park Guell in Barcelona he climbed up 3 flights of stairs to the top of a beautiful display, In France while on the beaches of Normandy he ran out to the cool part of the tanks in the Ocean. In Croatia, he climbed a huge flight of stairs to see a path to follow before I HAD to climb a set. Although I did climb the red wall in Dubrovnik. But it was gruelling and beyond fun. The view didn’t trump the awfulness of the climb. He did his best to help me. He carried the majority of the heavy stuff, he piggy backed me up the 99 steps to the top of the Diamond Head crater in Hawaii. He would push me up inclines and try to save me some grief. On our cruise ship I took the elevator one floor everyday to get to the main deck. One floor. These trips were all without oxygen. When we were in London and Paris and taking the trains it was just pure anxiety for me. I would see a huge flight of stairs that I would HAVE to climb just to get to the platform, get to the top, catch my breath discretely and then carry on. It was hard. It took away from the joy of travelling. It robbed me of what should have been amazing. A couple of times in Paris I was thrilled to find an escalator taking us up to a platform. To the point of almost crying. I feel this same way just going to the Saddledome for an event. I wonder how many of those treacherous steps will I have to climb up or down and then back up to go see a concert or hockey game. No one can help me and so it is something that riles me up inside. It makes life difficult to just be happy when everything is so damn hard.
Breathing should not be this hard.
My last five trips to Mexico and one trip to Hawaii have been with oxygen. That is a hard pill to swallow when I need this to survive the flight. I hate the stares. I hate the judgment and the “I wonder what is wrong with her?” Glares as I get priority check in.
The oxygen is a must as I de-sat on flights which is a choking, tight feeling and a fight to catch my breath. I am grateful for the oxygen but loathe that I need it now. As I type this I am wearing my oxygen because I’ve had a hard couple of days just with life in general.
We haven’t even covered all of the machines, meds, and contraptions I have to pack. I cannot forget one thing. When travelling it is impossible to just go to the local farmacia and get what I need. I can barely get it in Calgary. I have forgot a few things a couple of times and thankfully we were able to Macgyver a solution. Once, in Mexico, I forgot the tubing I need to breathe my treatments through. We rigged up a couple of empty pen shells to act as the tubing. Not ideal but it got the job done. Last year going to Hawaii for 2 weeks I mis counted the amount of enzymes I would need. These enzymes are crucial to digesting my food. Without them I lose all nutrition and spend too much time in the bathroom. We had to find a pharmacy that luckily sold ‘digestive enzymes’ as a supplement. I had to take like 15 at one time to be equal to the 3 or 4 I would need for a snack. I did this camping last year too. Totally forgot my enzymes for the weekend and paid dearly.
As you can see a trip, as exciting as it should be, is not for me. I am always filled with anxiety and fear. It could be the most beautiful place on the earth but I cannot fully enjoy it because CF never takes a vacation. As I re-read this it seems pretty gloomy but its my truth. I do my absolute best to enjoy myself, I find joy in that darkness and I create memories that are filled with love and laughter but I will never truly enjoy these adventures until CF is stopped.
Finally and on that note my 15th Annual Gala, That 70’s Gala is fast approaching and I want to invite you to join me. I promise you it will be a blast. Amazing food, Santa Rita wines, DJFlo, Sobeys Candy Buffet, games,70’s costumes and a really great silent auction. You can get your tickets here: www.sfcf.ca
If you are able to donate an auction item or want to become a sponsor please feel free. It would be my honour to showcase an item you might have to donate or to partner with you as a sponsor.
I would love to just go to the beach and just enjoy the beach and not worry about walking in the sand, trying to swim without my oxygen or carry my towels and water bottle to a lounge chair. The saying goes, someone is praying for something that another takes for granted. I pray for breath.
I am 46 years and I am considered a lucky one with CF.
Thanks for reading
N
lungsofanarchy.blog 