I've been working up the nerve to post about this, so here goes. Two weeks ago, a little blue friend came into my life, and suddenly I am no longer trapped at home. I knew logically and had even been saying out loud, "I've been mostly housebound for the last couple years", but I didn't even REALLY understand it until I started going out again two weeks ago. As soon as I got what I'm calling my "wheelie" (rolls of the tongue better than "combination rollator and transport chair"), I pushed myself to jump right into the outside world again. It isn't exactly easy, but it's now actually possible to go out without major concerns of literally keeling over on the sidewalk, and it has been nothing short of amazing. Grocery store trip = exciting!
In the past two weeks, I've been to:
- Local (small) grocery store with Bruno.
- The suburbs of Seattle for a medical test (first time I've left the city in two years!)
- Wholefoods (enormous grocery store) with Bruno.
- The community center/swimming pool with Bruno (while he swam, I had a snack and read), right after the Wholefoods - long outing on a day I felt like crap!
- For several walks, both with and without Bruno.
- To the bookstore, by myself, for a WHOLE HOUR.
- To run an errand with Bruno, and on the way back ran into a friend I hadn't seen in months, and chatted for a good while on the corner. Because I could sit!
In the past two years, I can probably count on my two hands the number of "fun" outings I've gone on. Nearly all my outings, especially this past year, have been for medical things: doctor's appointments, blood tests, various scans and therapies. It's become exceedingly difficult to go out on my own, so I've lost more independence and had to get more and more help from Bruno. I've become increasingly isolated, and gotten more and more used to just having a simple, small life at home, with those who still love me just as I am coming to visit, and with the magic of the internet to take me elsewhere. I've made the most of it, but getting to go out again... It's wonderful.
You can't imagine how hard even doing simple things like standing in line or waiting at a counter become when you're really sick and have terribly low blood pressure. I've had major issues with tanking blood pressure, dizziness, extreme fatigue, pre-syncope (ie. when you begin to pass out), and even at its worst angina (aka. chest pain from my heart straining to keep the blood pumping). Pushing through isn't an option, it's damaging. After months and months of advocating for myself with various doctors, therapists (occupational and physical), and navigating the hell of the health authority's system only to jump ship and hire help with this privately, all the work finally paid off (and with any luck, will literally pay off by means of our insurance actually covering the cost of it!) My wheelie arrived, and my world started growing again!
How it works is so simple: I take the wheelie with me on walks, so if I'm dizzy I am more stable, and whenever I need to sit down, I can (like to rest during a walk or in lineups which were basically the worst!) It means I can walk farther and for longer, and in a more safe fashion, since falling would be especially risky due to osteoporosis. When I might need more help, it has a seat attachment that stays folded down until I need it. Then in mere seconds, it can be folded out and then it's like a push wheelchair, so if I'm really feeling terrible I can be pushed around in it when I can't walk anymore, or want to go out for longer than I'm able to stand/walk.
It's pretty amazing how much safer and more confident I'm already feeling going out. I don't have to plan so intensely and negotiate my limits so hard, and can be more relaxed and not exhaust myself so much. That means I have more energy left for other things too - going out for a short errand doesn't knock me out for the entire day or longer. I should add that I've also had some improvements in my first few months on the pancreatic enzymes, so that's also boosting my ability to really take advantage of having the wheelie and go out more. I still feel like crap and have a lot symptoms to contend with every day, but I'm not constantly stuck in the bathroom and in a major downward spiral like I was a few months ago. The timing of the wheelie arriving has been great - right when I started feeling well enough to actually venture out, there it was. And I've also used it on days I've felt far too unwell to have gone out normally, putting it in chair mode so Bruno can push me around if we want to go out together when I feel too terrible to otherwise.
Ok, enough rambling, here are some more pictures! It's a "Rollz Motion" in case anyone is curious, it's by a Dutch company (the Dutch are apparently kicking ass at adaptive technology!) these next two photos are from them. This is when it's in rollator mode:
And this is when the chair attachment is added and in upright mode:
Here's me being a nerd after it arrived:
I'm still getting used to both the technical/practical side of using it - it was really nice trying it out first in Seattle where we felt really anonymous fumbling around! (I say "we" because Bruno is also getting used to it, for example helping me with getting it in and out of the car, walking with me while I'm using it, and also pushing me in it when it's in chair mode.) And then also the social/emotional side is something we are both adapting to - most of my experiences have been positive, but a few have been on the more awkward side. I've been consciously focusing on the positive aspects of having it - all the freedom it allows and support it provides - but I won't lie: it's a big mental hurdle thanks to loads of "internalized ableism" (i.e. "I shouldn't need this." "But I look fine, people will question whether my disabilities are real." etc.) and also learned/conditioned feelings of shame and failure around not being healthy, not being able to recover, needing a mobility aid, etc. I have to remind myself I'm not a bad person for being sick... It's an ever present struggle in a world where the disabled and sick are often cast out of society if they don't present as inspirational heroes.
Many of the times I've gone out with it, I've purposely dressed up so that I feel more confident. But some days I am not feeling very well and have to keep trucking, even if I'm just in my "comfy clothes" like a fleece and sneakers, and then it's more of an exercise in feeling okay and like I'm "still me" while using a device that is typically only seen used by the elderly. (And frankly, even the elderly should have more options for modern and well designed devices like this one too! I loved this video from Rollz about their designs and how many elderly apparently refuse to use mobility aids just because of how they look!)
Here's a more "regular life" version of what me and my wheelie look like out and about, and what I might likely look like if you happen to run into me out in the world!
Just two weeks in and my main thought is that I feel sad for all the lost time and experiences, and all the additional pain and suffering that I went through needlessly, because I didn't get a mobility aid sooner - because I didn't realize it was even an option. I probably should have done this a decade ago, and hope that my stability and energy will improve to a point where it may also make sense to get a power scooter or some kind of electric mobility device that would allow me even more independence and range to get out on my own. Right now, I'm not really quite well enough to bother with that, but who knows what the future holds. If it starts to feel realistic, you can bet I won't ever hesitate to do what needs to be done to get the tools I need again.
I have so much more to say about this, and I'm sure I will only have more tales to tell, the longer I'm using the wheelie. But I wanted to get this documented and posted for posterity before I put it off any longer. If you see me outside my house in the future, it's extremely likely I'll be using it, so I wanted everyone to get a little preview and hopefully get used to the idea with me. I know this may seem to some like a defeat, like something to pity that I'm no longer strong enough physically to go without it - but my getting a mobility aid is not me giving up. It's me being resourceful, and accessing the tools that help me live as best as I can with my reality. My hope is that you will be happy for me and my new found freedom, and I'm totally open to answering any questions if you have them.