This post is all about creating an intentional life for yourself – from exactly where you are right now.
Do it sick.
Do it lonely.
Do it poor.
Do it uncertain.
Do it with kids.
Do it while things are messy.
Do it scared.
This isn’t about pushing yourself beyond your means – whether that be financially, physically, or based on your nervous system capacity. If, like me, you live with energy limiting medical conditions, then hopefully you already know not to push yourself past your energy envelope. We’re not looking to get sicker than we already are, go deeper into burnout, debt, or whatever your situation may be.
But don’t wait until you’re healthy to live your life.
Don’t wait until you’re wherever you think you “should be”, to create a life you love.
Most people live with barriers of some kind. For myself, and many people landing on my website, it is physical barriers we’re up against. But someone can be physically healthy and mentally unwell, and there are many more barriers beyond health that people may experience. Whatever yours is, you deserve to build a life worth living, even from exactly where you are, right now. Don’t wait.
I love trying new things, and I live with several barriers to doing so.
As most of you know, I live with multiple complex chronic illnesses – ME/CFS, MCAS, POTS, hEDS, Hashimoto’s, Endometriosis, complications from Lyme disease and multiple more. My periods of remission (which I haven’t had since early 2020, prior to my pregnancy) have me hiking, kayaking, paddleboarding, swimming, playing ball, figure skating, and doing anything I can to embrace the outdoors. My periods of illness have me mostly in bed, using a wheelchair for outings (if I can get out at all), and sometimes unable to even make it out to the yard.
I knew when I got up this morning that my body was off, shaky, a little dizzy and I could tell that it was just one of those days where I was a bit weaker. This didn’t come as a surprise, as there’s been more on my plate recently, and my body is the first to show the signs.
It was also a day I’d been looking forward to for a couple of weeks. A new winter swim club was meeting locally, and I’d told my stepson we’d take him and do a family winter swim. My partner and I have gotten into thermotherapy in the past couple of years – sauna/cold plunge cycles, as well as just the cold plunging. It’s something we’ve enjoyed sharing with his son as well as having our toddler witness and has become something we can do together as a couple or as a family. Both the kids and myself love the beach, and my stepson loves to swim. Winter swimming felt like the perfect and unique spring break family outing! They even had a sauna set up at the beach for an extra treat.
Spoiler alert: we all had an awesome time!! But I want to share about the barriers, because I think its important to recognize the barriers we have, and then do what we can to intentionally build a life that feels worth living.
Here are just a handful of the barriers I was up against individually for an outing like today’s:
- Significant fatigue
- Limited energy envelope (scheduling rest prior and afterwards, as well as in the days before and after)
- Unable to drive myself there and home (I could get there, but the uncertainty of how my body would manage through the event creates uncertainty about how to comfortably get home)
- Dizziness (POTS causes dizziness, and can be intensified with the temperature changes that come with thermotherapy)
- MCAS risks (would I be safe? Would anyone be smoking, wearing perfume or scented laundry detergent? Would I encounter an unexpected mast cell trigger? Would I have a severe allergic reaction?)
- Pain (multiple of my conditions cause chronic pain)
- Exercise intolerance and mobility challenges (would I be able to walk up and down the beach to get in and out of the water, the water creates resistance which means walking through it is more exercise than regular walking, the rocks and sand are trickier to balance and find stability – especially if dizzy, the bathrooms would be a further distance down the beach possibly requiring me to use the car to get to them, etc.)
- Vestibular challenges (the movement of the water/waves in my vision triggers disorientation and dizziness)
- Worries (Would I have brain fog? Would it show? Would I accidentally push myself past my energy envelope? Would I feel okay? Would I faint? Would I be able to concentrate and socialize through my symptoms? Will I suffer PEMawos-Post Exertional Malaise and Worsening of Symptoms tomorrow?)
- Not knowing anyone besides the organizer, and, not knowing him well (there is a sense of safety that comes from spending time with people who are familiar with my conditions and know me beyond my illness. There is a different comfort level that comes with them already understanding my limitations, knowing my MCAS and POTS risks and how to keep me safe, supporting me in staying within my limits, and, in seeing me for who I am, and knowing how capable I am – not only my disabilities)
- Other family-based barriers that can come with toddlers, blended families, introverts, neurodivergences and more.
It would have been easy to call it off today and stay in bed. My body would have benefited from it (but it wasn’t harmed by going, either) and my family would have understood. In fact, the introverts in them would have likely rejoiced in the opportunity to stay within the comfort of home. My stepson would have understood, as he typically does when my health changes our plans; he and my partner would have made the most of their last day of our parenting period for this spring break at home, my toddler would have spent the day on her indoor climbing gym and I would have caught up on rest from the busyness of late, and stayed in bed.
Learning to stay in bed and aggressively rest has been one of the most difficult parts of being sick. I’d much rather be out enjoying life, but, my family and I have learned the hard way what happens to my body when we push it too far. I’ve learned how to say no, how to stay home, and how to spend copious amounts of time in bed – even when its hard; even when it’s the last thing I want to be doing.
What I believe is equally as important to learning to slow down, learning how to rest, learning how to be sick and honor your body as it is, is learning how to live.
Learning how to live well, while sick.*
Again, this is not about pushing past your energy envelope or beyond other means.
Identify the barriers. Find the things you can enjoy doing anyways. Do them in the way that is safe for you.
I knew when I got up this morning that my body was off. I knew before I left the house that I had to accept my limitations for where they were today – not where they are on my best days. This also meant that despite having an off day, I was allowed to accept my limitations for where they were today – not where they are on my worst days.
This meant that I could go and… I love the power of and. Multiple things can be true simultaneously.
I was having an off day, and I could still go to the winter swim.
I could go to the winter swim, and I had to be intentionally present with my body and continue to monitor its messages.
I could do the sauna/swim cycles, and I had to honor my body’s fluctuating needs (which meant less time in the sauna and ocean, more time resting, sitting, and regulating).
I could enjoy the camaraderie of the new community I was entering and not get caught up in any competitive nature.
I’ve witnessed, experienced and joined in on the competitive nature that can come out in thermotherapy communities in the past. I have also learned (and taught in the gatherings I’ve co-facilitated that included thermotherapy) that one of the important aspects of benefitting safely from these extremes is to ignore what others are doing and honor my own body for what it needs that day. However, I’d be lying if I said I didn’t still feel that competitive edge and the desire to be able to last as long as the others – especially since I didn’t know them, and they didn’t know me. Not only was I enjoying the temperatures, the sauna and the ocean, there is a sense of fitting in, camaraderie, and connection over the shared experience as two or more people playfully ag each other on as they push themselves to endure the experience of extremes through remaining in the hot or cold for longer.
I could not safely go to the winter swim if I was going to join in on any competitive nature.
I could not safely go to the winter swim if I was going to ignore my body’s cues, disassociate from any symptoms, or push through.
I could not safely go to the winter swim if ego or fear were going to be taking the lead.
It’s easy to let ego or fear take the lead when with new people. The desire to fit in is fairly universal, this goes beyond disabilities, illnesses, or trying something new.
We all had a great time. My toddler loved searching for rocks, people watching, and meeting some new kids. My stepson enjoyed the new and unique experience of a sauna on a beach and ocean swimming in seasons that most wouldn’t consider swimming in and has a fun story to take back to school with him after spring break. My partner and I enjoyed the experience, connecting with our kids in these ways and sharing the experience with others. The group of people were all lovely, welcoming, chatty and fun, and that community feel is something that I ache for and desire to intentionally cultivate more of in my life. We were all so glad that we went. And… I was dizzy. My symptoms were higher; I wouldn’t go so far as to say that I struggled, but I had to remain very mindful and present in my body. I chose to get out of the sauna and the ocean earlier than I wanted to, and earlier than the others in the group I was with. This wasn’t how I would normally do it, but it was the right – and safe – choice for me today, and it allowed me to still safely participate and receive the benefits of hot and cold without the risk of pushing my health beyond its current window of tolerance.
This isn’t about pushing through, ignoring our bodies cues, or disassociating through the symptoms or present barriers – its about expanding our comfort zones safely.
An important piece of learning how to live well, while sick, and creating an intentional life that feels worth living, is knowing who you are, what you need, how to honor those needs, and being okay with it. Or, if you’re not yet feeling okay with it (because that’s a process in and of itself), making an agreement with yourself to honor those needs anyways. I’ve come a long way with this, and there are still times when I don’t feel okay with the idea of meeting or respecting my own needs or limitations. Doing so, however, allows me to expand in other ways and I love the ways that I expand and add value to the world around me. I have also found that when I am clear about what I can and can’t do, or what I need in order to be able to do something, the people who are for me really show up and are made clear to me, while the ones who are not, simply fall away. While it can be difficult to lose people in this way, the ones who are aligned for my life at this time and where I am headed are here and they’re magnificent. They allow me to shine as who I am and they enjoy me for it. They’re not the ones who think I’m too much and simultaneously not enough. They’re not the ones who want me to make myself smaller or are not ready to face the things within themselves that my presence, needs or limitations triggers in them. They trust that I will show up exactly as I am, and they not only love me anyways but they actually love me because of it. They know that I hope they’ll show up exactly as they are too – needs and all.
It can be intimidating to show up to something new, with new people, with a backpack of barriers that you can’t just check at the baggage claim. But remember, we all carry our own backpack – baggage, barriers, whatever it may be, we all carry one. Some people’s can get left at home, or set down temporarily, and it can appear as if they don’t have one to carry, but they do. Just because yours can’t be left at home or hidden, doesn’t mean you don’t deserve to show up and take up space.
As Glennon Doyle says, “we can do hard things”.
Creating an intentional life isn’t always easy, but its doable – even while living with barriers. And it’s incredibly worthwhile.
You are so much more than your barriers.
* I want to take a moment to acknowledge that not everyone living with illness has the privilege of being able to go for a swim, to the beach, or outside at all. There are many days that I don’t have that privilege either, and I am grateful to have had it today.
I have had significant periods of being bedridden, and I know that what we can do to make our life feel worth living, while bedridden, is different than what we can do when we’re slightly more able like I am currently.
Here is an incomplete list of things that have brought me joy during various levels of bedridden to homebound:
- Watching the seasons change out my bedroom window
- Watching the birds, butterflies, bees, leaves, and flowers, outside my bedroom window
- Cuddles with my dog
- Playing with watercolour (with no expectations of doing it well)
- The sound of kids laughing as they play in my neighbourhood (through my bedroom window)
- Meditating
- Journaling
- Creative writing
- Listening to audiobooks when I wasn’t well enough to read
- Reading
- Virtual community groups
- Semi-regular text check-ins to friends, letting them know I was thinking of them – to remain connected in the way that I could at the time
- Energy healing
- Channeling
- Crystal bead bracelet making (and at one time, selling to raise funds for my treatments)
- Playing with my intuition
- Creating what I could from bed (channeling new meditations, drafting out workshops, etc.)
- Collaborated with another healer to co-facilitate spiritual gatherings which I could do once a month or so, with her physical support
- Doodling
- Reflecting
- Browsing old photos and videos and allowing myself to feel the joy of the time when they were taken, rather than the grief of it not being possible at the current time
- Gratitude practices (these were absolutely key)
What I hope you’ll takeaway from this blog post is not what I did today, but the idea of identifying your needs and barriers, finding what you enjoy doing from where you currently are, and doing those things in the ways that are safe and accessible to you at this time. The what may change as your health, finances, barriers, accessibility tools, etc., ebbs and flows, but no matter where you’re at in this time of your life, you deserve to create a life that feels worth living – and often that requires a fair bit of presence and intention.
While I live with complex chronic diseases that fluctuate by nature, having access to several things that bring me joy through various levels of fluctuating physical and cognitive ability has been crucial. Through a lot of intention and presence I have found what is accessible to me in various stages and brought them into my life not by chance, but by design. I hope that you do as well.
