My first mobility aid: I should have gotten one years ago!

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. 

Comments

What a fantastic blog Ariane. I am so happy for you and your wonderful new wheelie. It is such a cool device and it looks fabulous too! You look great with it -- the company should use your photos to promote it!

Thanks Krista! <3 It is pretty snazzy hey? I like that it looks a little mountain-bike-esque, the mountain bike of wheelies as it were. :) That was actually a good reminder, I found them on Twitter and sent the link to say thanks for making such a great product!

Thank you so much for sharing! I'm so happy for you :)
I have a family member dealing with mobility issues - depending on how things go, this might be a good option.

Wishing you the best!
- awkwardladies

Thanks Amy! I couldn't be happier with it - specifically this one (I know everyone has different needs but it's perfect for me right now!) It's really important for me to maintain and build strength so I love having the support when I am able to handle walks, and then when I'm not, it's actually a lot less weird than I expected getting pushed around. Seriously no regrets, it is so wonderful! xo

It bothers me when people see aids like this as defeat. I know a couple of people who would have so much more freedom and less pain if they didn't see a mobility aid as a form of failure and weakness. It's lovely to see that your experience has been positive!

It's really so unfortunate and all social conditioning, and it prevents people (like me!) from having a higher quality of life! It's so odd, even one of my best doctors was like "and hopefully you won't have to use it for too long..." and I was like, really?! That could not be less relevant to me! Let's face it, I've been sick for a loooooong time and being hitched to a mobility aid is the least of my worries! It's attitudes like that that probably kept any of my doctors from encouraging me to get one in the first place. Maybe you can tell them a friend of yours got an awesome modern looking one and is over the moon about it! ;)

THIS. I have found my therapists to be far more supportive than any of my physicians. It is so sad to feel pressure from our doctors to get out of and move away from mobility aids that can truly bring greater freedom and quality of life. Sure I can appreciate they may worry about decreased bone and muscle mass if we walk less. But I think they overlook the many many things mobility aids allow us to to. My wheelchair doesn't limit me. My illness does. My wheelchair allows me to overcome my limitations and live life more fully. I am a happier person because of this.

I'm moving past shame and concern for the pity others may view me with. Time to just get on with my life!

I'm so thankful your "wheelie" has improved your quality of life and I hope to bump into you on the streets one day soon :)

@zennmomma The irony is I can also walk *more* with this! Both because it supports me pushing my limits a bit, and also because I don't waste all my energy trying to manage standing in a line for example. It's so much more complex than just "sitting" vs walking. Also, I've come to take even my favourite doctors' opinions as simply opinions - I know what's best for me and my quality of life!

Glad you're also finding your way through this and able to focus on the benefits that supportive tools can bring. :)

girlfriend! this is the best. I'm so thrilled to read about not just your practical experience with your new blue friend, but also the emotional side of getting used to it - I know so many ChronicBabes will find this relatable and helpful. thank you for sharing your story!

Thanks Jenni! <3 I seriously want to help normalize using mobility aids as much as I can, especially for people in the grey area of dis/ability - like, I can walk/stand but not for long/far so do I really need this? Why the hell not - even with it, I have nowhere near the range of a healthy person, so why not give myself a little boost by using a tool that's available. (Seriously eyeing power scooters now too for more range!) The ONLY reasons (other than financial) why anyone in this situation wouldn't use a great tool that helps increase their quality of life are social conditioning/internalised ableism, shame, and a myriad of misunderstandings and fears about what using one means and the consequences of it. There's no shame in using these, the only shameful thing is how many people who would benefit so much from them don't realize it's possible or how much it would help because of all the social stigma around disability. Up with wheelies, down with stigma!

I find it ridiculous that people could judge based on the use of a mobility aid or any other assistive device, be it a hearing aid, glasses, an oxygen tank, a voice communicator, a wheelchair, an animal or a cane, etc. As far as I'm concerned, whatever allows you to go out into the world, helps you accomplish your goals and gives you a sense of comfort, security and well-being, so that you can feel less restricted in your movements or activities is just a bonus! Most people at some point in their lives will need some form of assistance, be it mechanical or human. It's so ironic.
I guess it makes some uncomfortable to be confronted with an awareness of their own vulnerability, among other things, no doubt.I really appreciate your openness and honesty in describing your own feelings about the whole experience and what you had to overcome internally to feel more confident in leaving the security of your home. Really insightful.
You look lovely in your photos and so much more relaxed. That last one of you sitting in your hot rod would be worthy of a painting...I'm really happy for you and looking forward to reading more about your upcoming adventures...

Thanks Tanya! <3 It is ridiculous, and yet it's SO COMMON. Have you seen all the awful stories online about people being shamed for using disabled parking spots when they have invisible disabilities, or for standing up to grab something off a shelf if they're using a wheelchair? I've gotten major looks already when using the wheelie in chair mode, and then standing up to get it over a barrier or up and down stairs. As soon as you're not either walking or completely paralyzed, many people immediately doubt whether your disability is "real". There is a ton of bizarre and very complex social conditioning around this stuff, which leads to judgement and very rude behaviour! It's a real shame - being sick is hard enough without having this additional layer of weird social bullshit to deal with! Hopefully having one more person out there advocating and normalizing this experience will help in some tiny way. :)

YAYYYYY! I am so glad that you are outside living more fully because of your mobility aids. Its amazing to finally "join the world" when you've been unable to for so long. I feel like all the joy and accomplishment and ability to be social far outweighs the stigmas and hard feelings around walkers and wheelchairs. occasionally I will be out somewhere new in one and get this mini panic attack "whats going on how can this be real oh god everyone is gawking at me in my wheelchair" but it passes...and i I get to be outside my home wearing shoes and doing some so mundane and yet so exciting :) Many high fives and hot cups of tea and hugs <3 g

genevieve www.shipwithnosails.com

I totally know what you mean - that moment of self awareness, where you're like oh yah this is not "normal" and "looks" certain ways. But the positives truly outweight the negatives, it's AWESOME. :) xoxo! <3

Having started talking with you online last summer, it makes me so happy to see the change in you and the power and independence you are reclaiming. Selfishly, it makes me feel more equipped and confident to deal with the feelings that will come with a possible mobility aid in my future, as my EDS progresses. I just want to say how happy I am to have "met" you on our respective chronic illness journeys. Onward and upward!

And here's to hoping *ALL* public places will get with the program and soon be welcoming/accessible to everyone!

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