Letting Go With Chronic Illness Doesn’t Mean Giving Up
Simplifying Life with Chronic Illness
Learn to accept what you need and don’t need with chronic illness. Growth comes from making room for new things.
About a year ago, John and I realized we were in trouble with my health. Yes, we knew we were embarking on a new journey with me being chronically ill, but it took us a while to realize just how much our lives were going to change.
Most of my readers that have stuck with me since My Several Worlds first launched in early 2007 have watched us take journey after journey. The whole point of this site was to write about the several different worlds I live in: Canada (my homeland), the USA (John’s homeland), Taiwan (our adopted homeland), and China (where we met and spent our first three years together.) Soon enough this site had to be expanded to include another journey – the journey of being chronically ill abroad.
In 2009, we learned I had Ankylosing Spondylitis. No one really prepared us for what was coming. As the hospital appointments continued to increase and my pain and suffering worsened, the stress of keeping up with our business, our lives, and the things we used to love to do together started to take a toll.
We stopped traveling. We stopped going out.
We dug down deep and held on to life as I fell further and further down the rabbit hole, getting sicker and sicker with an incurable disease that is unstoppable.
I’ve achieved remission twice since 2009. The last time I was in remission was July 2014, and that was pretty much the end of life as I knew it.
By 2015, I knew I’d be struggling to stay out of a wheelchair. I was right. We finally decided to buy one in 2017.
We also made two trips home in 2015 to see our families. We knew what was coming. Deep in our hearts, we could see the changes unfolding like new leaves on a tree in the springtime.
As these changes occurred, I kept fighting and using all my resources to keep going, but on February 18th, 2017 – the day I received another new and devastating diagnosis – we both had to make some very difficult decisions. I was no capable of working full time or travel and we are still trying our best to cope with that thought.
Letting Go With Chronic Illness
We aren’t quitters. We started pulling back on everything. We decided that if my health hadn’t improved by August 2017, which was when my sister and her husband where throwing their wedding reception, I would back out of everything – all the volunteer work, travel, and extra work I had been doing.
We divided up our work load differently to space things out. I flipped my work hours and started sleeping in longer and working later in the evening to see if the sleep-ins helped with my chronic insomnia. It has helped. It was a good change to make, so we’ve stuck with the new work hours for me.
May 2017 came and went and there was no improvement in my health.
We were out of time to buy tickets home to Canada and my doctor did not think I should fly home without access to medical care in Canada. It wasn’t safe for me to fly when I had spent the last part of 2016 and the first part of 2017 crashing – fainting, passing out, going blue, – endless trips with John rushing me to the hospital.
My body was saying NO MORE. STOP. STOP. STOP.
August 2017 arrived and we looked at each other and knew we would spend the rest of the year tying up loose ends in our lives in order for me to rest completely in 2018.
My one and only goal in 2018 was to get some of my health back so we could fly home to see our families.
I was able to do this flight in 2018 and then I was able to get home again in 2019 – but those journeys made me very sick.
This year, I’ve been housebound for six weeks trying to recover from my flight to Canada in July 2019.
I am sick every day with very few good days in between, and I’ve backed out of everything. I’m only able to manage a few hours of work per day.
During all this time, we have found it exceptionally hard to slow down, simplify our lives, and care for ourselves. Our journey in 2017 towards focusing on letting go with chronic illness began, but it hasn’t ended yet and we’re realizing this journey is never going to end. It will be the longest journey of our lives together.
I knew I could do the hard part of scaling back our lives. After all, I did it in 2003 when I packed my entire life into a few boxes, stored them with my family, and moved to China with a few bags. We arrived in Taiwan in 2006 with a couple of backpacks. Over a decade later, we had so much stuff in our lives again, it’s like we were back where we started before we left North America.
Why are we so afraid to let go of things in our lives that cause us stress? Why does it take so long? Why are we afraid to practice self-care?
For me, I can say without doubt that my drive to succeed came at a great personal cost to my health and soul.
I knew I was going down, and I spent the better part of 2017 preparing for it. I struggled to figure out which parts of my life were causing the most stress. I told myself over and over I couldn’t keep juggling all those balls in the air anymore. There was no time to run my own business, continue with my volunteer work, keep up with my health (29 visits to the hospital in 2017) and keep my relationship with my husband going, so we chose to remove it all and decided to focus on us.
I cleared out the parts of my life in my home that were gone years ago.
Anything that caused me stress, anything that did not bring me joy, anything that caused me to exert extra energy all went out the door, room by room, item by item, with many tears and silent reminders to look forward to tomorrow and not think about the past or the future.
I had to learn to live in the 'now' with chronic illness. It's hard to live in the present when you have illness or things or people in your life that won't allow you to do that. Carrie - My Several Worlds Click To Tweet
To achieve my goal, I took a serious look at everything in my life, all the things in my home; all the people who were there or not there or who were draining me.
I let toxic friendships go. I learned that some people couldn’t support having a friend who was sick all the time.
I made a conscious decision not to allow these people to have access to my life anymore.
As for our living space, letting go of what we have accumulated in Taiwan over the past 14 years was hard, but I chipped away at it room by room for a year.
Some possessions sat in a corner for months while I deliberated over whether I should keep them or not. In the end, I realized if I was thinking so much about it, it probably needed to go.
Now I can’t say how John handled all of this. Certainly he had his own issues that year dealing with our decision to cut back and he handled things in his own way, but we were both in agreement. We appreciate the people who took the time to listen to both of us and tell us it was going to be ok. I can’t say anything about John’s journey, but for myself, I finished up and created my end to the end of that old story we had been living.
By the time I got to October 2017, I was down to the basics, and I went through it all again once more to decide if it really deserved a place in my new normal.
It all got given away.
This is what I’ve learned after years of study and personal experience with chronic illness:
1. Change your mindset in order to let go of one life to make room for your new life. Clearing out and letting go is a way of life. It’s a journey.
Clearing out means letting go of things, people, and thoughts that prevent you from living the life you must live to be happy. Grief for a loved one, grief for oneself, illness, betrayal, and anger are all things that you can let go of if you work on it.
2. Put yourself first and practice self-love. It’s easy to care for others. It’s also easy to neglect yourself in this day and age as we are swept along in day to day life.
Clearing your heart and mind starts and ends with you. If you don’t feel safe to do it, you can’t let go. You create your safety net by recognizing what needs to be dealt with.
3. Slow down. Clearing old habits and resisting past behavior traits that cause you stress are not possible if you don’t slow down and take time to make the changes. This means you need to practice awareness, not rush through everything.
4. Simplify your home and living space. Unplug, do less, be more.
5. Figure out what your fight or flight triggers are and cut them out. Triggers could be places, people, sounds, things, and emotions. The things that keep you stuck in place and experiencing the same emotional reaction – those things need to go. Once you know your triggers, you can start to move forward WITHOUT THEM.
6. It’s ok to vent to people that you trust as you’re working through this process. It’s natural. If they aren’t accepting, let them go.
7. Cultivate self-care inside yourself and in your home. Clearing the space around you can changes the energy vibrations surrounding you. Set boundaries with other people. Understand what is yours and what doesn’t belong to you. Forgive. Let go old stories. Make room for new stories. Learn to live knowing you are enough.
8. You can break the chains of bad habits, pain, and cycles of grief and find the other side – surrender and simplicity – when you realize you don’t need all that extra stuff.
It took me a year to clear my space. 365 days to clear everything out. A year to explore myself and understand what I did and didn’t need in my life. My closets, bookshelves, filing cabinets, office space, kitchen cupboards, and boxes of memories have been whittled down once more, just like I whittled my life down in 2003 when I left for Asia.
The sense of peace and calm I have now that I’ve broken free of the chains that were causing me so much stress are overwhelming, but reassuring.
I now understand the term ‘the incredible lightness of being‘ – an absolute absence of burden.
And no matter how much physical pain is ahead of me in my life, I know I’ve done the best I can do to start fresh and be less fearful while being happier and kinder towards myself.
“Everything is fresh, the essence of realization.” ― Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times
Clearing out is one of the most calming, therapeutic practices you can possibly do for yourself because you are consciously letting go with each step.
It can all be done in a year. It all starts with you.
“We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.” ― Pema Chödrön, When Things Fall Apart