"Your Life is Your Work", A Week 'Off' and Other Thoughts On Illness to Wellness

Monarch On Cone Butterflies At The Cabin

Going from illness to wellness as quickly as I am is a massive and radical life change. 

Falling in love and being in a relationship is a massive and radical life change.

Having both of these things happen simultaneously is at once exhilarating and overwhelming.

My body--all of our bodies--doesn't know the difference between eustress (good stress) and distress. We feel them all the same. Which means my body is a little tired right now.

I found myself in counseling recently remarking that I felt really tired and overwhelmed again. When Evelyn was able to put into words that my life is changing in massive and radical ways--each one of which would be a big deal alone--I understood why I was overwhelmed and tears welled in my eyes.

View From Our Deck

My PT, Ryan, came back from a training session with my Dr. ANS and a PT he has worked with for many years on how to do very specialized techniques on me. 

Ryan asked the PT: "How do we help her to get her strength back after so many years of inactivity?"

Without pausing, the PT said to Ryan: "Her LIFE is her work."

Think about those words.

They are powerful.

For all of us.

Massive. Radical. Life is my work.

These are the words playing over and over in my mind these days. These are the changes and processes I am going through, trying to find my way day by day.

Cone Flowers

What does it mean that my life is my work? 

Almost every day of the week, I have an appointment that is related to maintaining or improving my health--massage, acupuncture, PT, counseling, medical appointments, etc. I also have a lot of things to do every day at home to maintain my current level of functioning and improve it. I'm also trying to do more and more things for myself that I didn't used to be able to do, as well as take the time to get dressed, put on make-up and do my hair most days.

I am busy all of the time. I struggle to find time for leisure. I struggle to find time to get things done that need to get done. I spend a lot of time and energy on my new relationship because I think that matters a LOT. And I forget to relax and BREATHE.

In this sense, I'm like my healthy friends and family. Overwhelmed. 

Butterfly Magnets!

After Ryan heard the words that "life is your work", I felt a major shift occur in his thinking about what I need to do and how I need to focus my energy. I saw him for the first time completely understand that living with chronic illness is a full-time job. 

He also helped to affirm that the way I am working to improve my health--by engaging in more outings, being more active, working to be more independent--is the way to continue to regain strength and energy.

Neither he nor the PT he met with want patients to be using more energy to do a bunch of exercises at home.

They want LIFE to be the work.

View From Our Deck

Letting this phrase sink in a bit, I realize that this it's not just relevant to my healing process, but to how I live my life overall.

Life itself can be our prayer. How we live it every day, how we interact with others, how we view the world, how we engage with the world, how we spend our time, how we use our precious energy--this is our work and our prayer.

Queen Anne's Lace 

My work right now is to continue to do all that I can to be more independent and more highly functioning and to engage as fully as I can in life. And oh, the thousands of ways I want to engage in this LIFE!

I know many people are asking me or my parents this: Can she work? Can she do a computer job from home? When will she be going back to work?

Let me get this out in the open. Going back to work in any capacity is NOT a goal that is in any of our heads right now. It's not realistic in any way at this time. I still sleep a lot, I still can't focus to read, and I still don't do my IDL's like grocery shopping, laundry or cooking. We are focused as a family on what will give me the best quality of life and on continuing to improve my health--not on getting me 'back to work.' I don't have a 'lot of time on my hands'. 

Native Butterfly

Ryan began to hear me say how tired I was when I came in to see him on Monday afternoons. This meant we really had to back off of the PT.

He said to me: No one every expected you to get better. First, you were the most refractory patient who nobody knew what to do with. Now you're improving in ways no one ever expected. You're a pioneer in this. Dr. ANS should write a case study on you!

In light of this, he said, we really don't know what kind of cumulative effect continuing to push so hard is going to have on your body.

I LOVE Where We Live

He proceeded to give me the best prescription ever!

Ryan told me to take a week off from any appointments and try to get some rest.

Beautiful Farm We Drove By

That is exactly what I have been doing since last Friday.

Mom and I rented a small cabin about 30 minutes outside of town where we RESTED. Truly rested.

We spent four nights there!

We ate and slept. Mom read. I colored and sewed. We went out to eat dinner one night and out to lunch one afternoon in a small town nearby. We did a little shopping at a quant little shop. We sat out on the patio and looked at the mountains, sipped wine, and unplugged. 

I did not check my email or do any texting. I only checked my phone ONE time each day to check in with Kiernan. We talked on the phone each afternoon. He sent me lots of texts and pictures to update me on the puppies.

Phone. Turned Off. It felt great!

Isn't it amazing how we could all take time to sit on our own patios and read, rest, meditate or just 'be', but we so often don't because we're thinking about our to-do lists and the piles waiting for us inside the house?

We were so excited that taking an impromptu vacation to a place that didn't necessarily fit all of my needs was 'doable' for me. It gives us so much more flexibility in terms of travel.

I've used the time since our return to try to get some things done around the house that have been piling up. I've tried to tune in more to the puppies. I'm taking some time to write. I've done some cleaning and organizing. I'm not sure how I feel about returning to my faster pace on Monday. 

Ideally, I need to find ways to carve out time for writing again, for listening to audiobooks, for watching a TV show, for having some time at home to work on projects that I really long to complete.  I long to do things here that haven't been done for 17 years. 

Because all of my afternoons are taken up by appointments, I am not able to get blocks of time to write or work on things at home, which has lead a lot of stress.

How did I so easily let things that were routine parts of my day--an hour of TV, an hour of an audiobook--slip away? 

It's so easy to get caught up in the new freedoms of improved wellness that I find myself trying to squeeze something into every second of the day. TV used to be a necessity because I didn't feel well enough to do anything else. Now, I often do feel well enough to try to do a little something else, and don't carve out the time for my body to relax. 

Not carving in time to calm my ANS and quiet my mind has left me highly anxious, stressed and overwhelmed. Not taking down time is likely not sustainable, and possibly detrimental to my healing overall. I need to remind myself that I still need rest, that resting is not equal to being lazy, and that engaging in activities I enjoyed when sicker, such as TV or audiobooks, doesn't mean I'm regressing health-wise or cannot be reframed as activities to enjoy whether sick or not. 

We all struggle with balance. I'm not saying that I am any different than any other human being living in today's very busy world. I'm just coming from the perspective of being a person going through the process of going from illness to wellness after 17 years of only knowing illness. 

I didn't understand the ways in which improving health would be so challenging and, at times, stressful. Most of the stress is eustress--the good kind of stress--but there's distress too. The same goes for falling in love--lots of eustress--but sometimes distress. 

Like the fog clearing on the mountain tops in the photo above, I know my mind and body will find their own clarity. My mind and body will find ways to embrace this new life, these massive and radical changes in healthier, less overwhelming ways. I'll figure out where my energy needs to be focused, and I'll continuously be trying to readjust to accommodate my health.

It's a process I feel fortunate to be part of. It's a process I never thought would happen. Yes, going from illness to wellness is sometimes very hard. And so is falling in love. 

Yet, I wouldn't change them for the world. Not at all.

LIFE is my work.

I am very very blessed.

Blessings,

Emily