I haven’t written in a long time For a lot of years I just didn’t have anything to say. When I did have something to say I didn’t really have time. Even this is composed in a stolen moment but I wanted to share what’s been on my heart.
The metaphor in this post is pretty hilarious because I get seasick on BC Ferries. On my honeymoon our boat engine died in the ocean in Newfoundland and my new husband suggested we swim and I said THAT IS HOW PEOPLE DIE THERE ARE WHALES (some nice Newfies saw us drift past their dock and they towed us to shore). I am the last girl you will voluntarily find on a boat. But here we are, stay with me.
For a lot of years I struggled very hard with chronic pain. In Feb 2020 I was dislocating joints every day, in pain all the time, we switched grocery stores because I couldn’t make it across the store. I was looking at walkers, wheelchairs and a shower chair. Ehlers-Danlos was kicking my ass. My life had a ton of stress from a lot of sources.
When a large amount of that stress resolved, I was able to move with more ease, I wasn’t tense all the time which was contributing to the frequency of my dislocations. I went from struggling to cross my thousand square foot apartment to being able to walk 5-10km with my largest concern being thigh chafing. I stopped taking daily pain meds.
In the last couple years I have had major allergy issues. My chest would break out in hives. My cheeks would be flush. My brain would be fuzzy. It was felt like a low grade fever and a sunburn. This was something I struggled with daily. Co-morbid with EDS is often mast cell activation syndrome but I haven’t undergone all the testing for that yet because the wait to get into a public allergist in my town is 11 months. I saw a private allergist who thinks it’s idiopathic hives. I take about 3x the OTC amount of Reactine every day plus Singulair to keep the hives at bay. Under major stress it flares but it’s nowhere near what it was. I can literally breathe again (and I have a pretty sweet epi-pen.)
My whole life I had a lot of things going on in my brain that I didn’t realize was ADHD. It was really hard to focus, sequence, manage emotions, all sorts of stuff was really, really hard. I looked around and saw so many of my peers (midlife-ish female entrepreneurs) being diagnosed and I did some reading. I always conceptualized ADHD like “wriggly young boys”, bouncy, hyper, excitable. But when I learned about how it presents in women it was like WHOAH. So I went down a couple paths and finally got a diagnosis and have started meds. My brain is less full of bees and I have clarity and I don’t feel so broken. I can get stuff done. I can think. I’m calmer.
Life is good.
So now I’m at this point where I’ve had, over the last two years, feeling like instead of having a hard ceiling of what I could do but now having more of a canopy. I am always someone who says “disabled people are capable and can do all the things” but the reality is that we have limits imposed by our conditions and sometimes we can scrap past them but there’s always a cost and it’s not always consistent to be able to push past.
My conditions have been really variable and the outer limit of what awful things they did to me really limited what I could do, how I could do it and what I could take on because life was unpredictable. That’s still a reality for me in a lot of respects, I need to keep my stress low to be able to manage my health and if I don’t pay attention, I can easily end up right back where I started.
I built a life raft for myself when traditional employment wasn’t suitable from a health perspective. I cobbled stuff together and it is a pretty damn sweet life raft, don’t get me wrong. But I chose between available options and made the very best of what was available and within my grasp. I’m grateful for everything piece that kept me upright and out of the frigid waters.
Now I’m at a point where the storm has settled a bit and I am so glad I have this life raft, but I kinda wanna build a boat. I gathered together debris and built something that has held me up and taken me places I never could have imagined. So instead of just reacting to the waves, I’m at a point where I can actually chart a course.
A number of projects are coming to a natural end and I’ve got space opening up on my calendar. I have more energy than I used to and I’m able to build more healthy habits. I have had some incredible things happen (writing five books in two years, dozens and dozens of podcast interviews, teaching in a business coaching program) and I’m a ton more confident than the terrified woman I used to be. It feels like more is possible.
So now I’m in this place where I’m taking pieces of my life and asking myself “Is this good for me or was this good enough for me?” and “Is this what I want or is this what I could live with?”. “Am I doing this because I had to or am I doing this because I want to?” and “If other things felt possible, would I still pick this?”.
I was treading water for a long time and now I feel strong enough to swim. But I never had to think about direction before because I was just trying not to drown. My strategy was Pay Rent Keep Fridge Full And Try Not To Go Bankrupt. That’s a good goal. I feel like I can dream a little bigger. I feel like I can live a little louder. It’s time to build a boat and figure out where it’s headed.