Being chronically ill requires constant upkeep and vigilance to manage being sick every day of the year. It’s a full time job that is relentless in management and upkeep. You can never get in ahead in this job. You’re always borrowing time and playing catch-up.
Imagine working at a job that doesn’t allow you to take a rest. There is no vacation when you’re chronically ill. Even thinking about managing your illness while traveling and planning ahead to accommodate everything takes time and effort.
Chronic illness, chronic pain, and chronic fatigue can’t be explained if you’ve never suffered from it. You can’t compare it to a broken bone, the flu, or a long day with the kids. It can’t be described.
Nothing could’ve prepared me for my Ankylosing Spondylitis diagnosis in 2009. I had symptoms for well over a decade before I received my diagnosis and since then, I’ve received several more diagnoses that mean constant pain and fatigue every day of my life.
I would do anything now to get the time back that I’ve lost since my body betrayed me.
I would’ve found more ways to enjoy my good health while I had it, because now my body won’t let me borrow energy from tomorrow. I’m lucky if I have enough energy to get through today!
It’s a fine balancing act to remember that if I feel ok one day, I still need to spend my energy carefully because tomorrow is always waiting.
If I push through today, tomorrow will not be kind to me.
Every single thing I do is a bargain I make with my body to get things done. Nothing is free anymore. Tomorrow always makes me pay.
As someone who has been traveling the world for over 20 years and who has now had to stop traveling completely, I have wished many times over the years since my diagnosis that I could have just a few days without having to worry about my health.
- I wouldn’t have to worry about pre-planning or lugging around emergency medical supplies.
- I wouldn’t have to think about how much I can and can’t do. We wouldn’t have to build ‘rest days’ in between our travels.
- My husband wouldn’t need to feel bad about going out and doing something without me because I’m too sick to join him. We could enjoy our time together instead of blocking everything off into 2-hour chunks of time with lots of rest stops in between.
- I wouldn’t have to worry about what the cost of an international flight from Taiwan to Canada would do to me. I’m not worried about the cost of my flight. I worry about the 24+ hours of travel and layovers to get me home to see my family. I haven’t seen them in two years because I’ve been too sick to travel.
- We wouldn’t have to weigh the consequences of what will happen if we decide to to do something spontaneous, like staying out to do an activity for a few extra hours.
- We wouldn’t have to think about how much walking I can do before I need my wheelchair.
There would be no bargaining with my body.
No worrying about how I’d feel the next day, and no stress about planning everything down to the last detail or being reminded of how very little control I have with anything in my life these days.
It would be amazing, and it’s impossible for me to imagine.
What would you do with three days without chronic illness, pain, or fatigue ?
I was sad to learn that when I posted this question on Twitter and CreakyJoints shared it on Facebook most people felt the same as me. It was unimaginable for them.
Many people wrote in to say that they couldn’t imagine a day without pain, let alone three days. Quite a few said they didn’t remember what a day felt like before pain. I agreed with these answers. At one point I was living my life free of pain, but I can’t remember those days anymore. I look back at our travel photos and family celebrations and wonder where that woman went.
When I asked this question, I immediately posted two replies: It’s unimaginable to me to think about having three days to do whatever I want, but when I really started thinking about it, I decided that my answer to a three-day dream vacation free from pain and sickness was to spend some carefree time with my family.
I’ve seen many countries around the world, but I’ve never seen Bolivia, so I honed my answer done to a road trip in Bolivia with loved ones.
The avalanche of answers started rolling in to my question:
- That is an unfathomable question.
- A 12-year-old patient from Ontario, Canada wrote in to say that she would take those three days to ride her pony without pain and to be able to spend more time with her friends instead of pain. **I cried when her mom sent me photos of her hands. I chose to feature this photo of her riding her pony instead (with her mother’s consent).
- Oh, this hurt deep. Run, swim, play some volleyball/basketball, anything to feel my body feeling strong and healthy again. Then shop for clothes. Then travel to see friends and family in a big whirlwind and then collapse exhausted but happy having actually ACHIEVED something.
- I would finally get my house in order. It’s nothing but unfinished projects. Things that need to be put away/thrown out. A closet organizer that has been sitting and waiting for over a year. And just a whole lot of stuff. I’d get it done once and for all.
- I would spend that time terrified for when the pain would return. THAT is the true horror of chronic pain to me. Even relief from pain causes fear and anxiety. Now give me a couple of weeks… THAT would be worth it. Yes, I’m greedy.
- Three days? I would love to have just one. Three days seems like a dream come true. In that one day I would honestly. I would be too scared to do any activities afraid the pain would come back so I would have sit on the beach and just enjoy the pain free time
- DANCE! I would probably go running, jumping and dancing through the field next to my house the moment the pain went away. I definitely wouldn’t be getting any sleep for 3 days!
- I read that and was completely speechless. I was born with my pain and I have never had a day without pain. Dang, what would I do??? I would start with happy tears and then do ANYTHING my little heart wants to!
- After 30+ years of chronic pain… I can’t even imagine what that would “feel” like. I had one day in July 2001 that I didn’t hurt… and didn’t even realize it until the day was almost over. It’s exhausting ignoring the pain and trying to “stay above” it.
- That’s a tough question. Three days would just be a mean teaser and I’d rather just deal with the pain I have now. Sounds stupid but if I have days now without pain from all my damage I overdo things then pay for it dearly for days afterwards.
- Paddle board. Have tons of friends over for dinner. Fill ever sec of those 3 days with family, activities, acrobatic like sex, not sleep, bowl, man the list seems endless!
- Day one: Clean my home from top to bottom, Day 2: Take my son on an all day adventure full of fun things he would love, and Day 3: A day for me to do things I used to love, shopping, drive through the country shooting pictures and maybe some evening hoops. How I wish…
- I’d go to see people I don’t have the energy to visit, especially those a long way from where I live, I’d run – always hated running but now I can hardly walk I dream of running free, I’d go to the cinema, a concert, dancing…I could easy fill those 3 days with memories to keep me going!
- I would just enjoy the fact of being pain free and having unlimited energy while I went walking, did karate again fast not slow, go out hiking with my hubby and I would plan a movie and popcorn day for the fourth day to rest up.
So, this leaves us with your answers. What would YOU do with three days with NO chronic illness, pain, or fatigue to worry about?
Do you think it’s unimaginable or can you dream a little with us?
About the author:
Carrie Kellenberger is a Canadian expat living in Asia. She is a chronic health advocate for a number of health organizations around the world. Carrie launched her first travel and health site, My Several Worlds, in 2007. Her articles have been featured in dozens of magazines, books, and online sites, including print and digital publications such as Travel and Leisure Asia, JPG Magazine, Unearthing Asia, Hip Compass Travel Escapes, and Wandering Educators. She is a founding Board Director for Walk AS One. Carrie received her Ankylosing Spondylitis diagnosis in 2009. Since then, she has received several other diagnoses including CRPS, Fibromyalgia, and Myalgic Encephalomyelitis.