Sometimes I use a wheelchair. See?
I’m just kidding. Well, I’m just kidding about the motorcycle. Sometimes I really do use a wheelchair. And sometimes I make my mom haul that wheelchair on to the back deck for a photo opportunity. See?
I have dysautonomia and because of this, oftentimes I cannot stand up or walk around for very long without an inappropriately fast heart rate, an abnormal blood pressure and a whole host of very unpleasant symptoms.
If you’re confused or curious and want to know a little bit more about dysautonomia then I wrote this appendix/addendum/supplement/whatever for you. And if you’re satisfied with that brief description, great. Carry on reading.
One of the challenges of dysautonomia is that I never know when this barrage of unpleasant symptoms is going to hit me. I might think I’m okay but then a few minutes later find myself in quite the pickle…like the time I was trying to buy yarn and ended up having to leave the store empty-handed because I couldn’t stand in line and then I had to hang out in my car with my feet up on the dashboard for a while until I felt steady enough to drive home…or the time I had to crouch down to the floor of the library and pretended to be really enthralled by the books on the bottom shelf so that people wouldn’t think I was awkwardly waiting to start a game of leap frog.
As you can probably imagine, this can make going out in the real world and doing normal things like standing and walking very difficult.
So, sometimes I use a wheelchair.
After I was discharged from the hospital in November, except for going to appointments I really didn’t leave the house. I couldn’t leave the house. By March it was clear that things weren’t going to magically get better right away so I asked my family doctor to write me a referral to borrow a wheelchair from the Red Cross.
Honestly, I think this whole wheelchair thing has been harder for other people in my life to accept than it has been for me. Thinking about me in a wheelchair has made some people feel really sad and sorry for me. Other people, understandably so, have been caught very off guard when they’ve run into me using it.
But the thing is, I don’t feel sad about it and I don’t feel sorry for myself. It was actually an easier transition to make than you might think. I read an article once on the subject of how do you know when it’s time for a mobility aid? It stated that if you’re even considering using one there’s a good chance it’s already time and that seemed very logical and practical to me. As well, one of my closest friends is in a very similar health situation and she has been using a wheelchair for a while now. It’s allowed her to go out with her family and friends and to even travel a little. She really led the way for me. I saw what it did for her and I saw how gracefully she accepted it and used it to push past limitations instead of letting it become a limitation.
I wanted that. I wanted to be the one in control. I wanted to have some freedom despite my symptoms, not be limited because of them.
So I decided to give it a go. I haven’t used the wheelchair that much yet because it’s an old clunker that weighs about a thousand pounds and I’m not able to lift it in and out of the car by myself. Plus even if I could lift it, I still wouldn’t want to go anywhere on my own because the brakes don’t really work, the wheels have next to no grip and it’s not the right size for me so it’s a bit awkward to maneuver myself. But still, borrowing it was such a great decision! Ironic as it may sound, using a wheelchair has given me some freedom. Now that I know what a positive change it can make in my life, I am starting to jump through all the hoops required in order to get my own (SO many hoops…a story for another day) so that when I have to return this one in a few months I will still have that freedom. Hopefully I will have some independence, too.
I realize it might look like a step backwards, but I don’t see it that way. In the bigger picture it’s a step forward, an opportunity. It’s a good thing. So please, don’t feel sorry for me. There is no need for that. Celebrate with me instead! Be happy that I am finding ways to make this life work for me. There are a lot of things I didn’t think I could do anymore when really I just couldn’t do them on foot. As it turns out, though, there is more than one way to get around.
So to anyone else who is feeling stuck, maybe it’s time to try a different mode of transportation. Find some wheels and come roll with me. If you’re feeling trapped by circumstances beyond your control, if you’re feeling like you just can’t keep up with the world around you, or if you feel like you’re straight up headed in the wrong direction, come roll with me. Grab your wheelchair, bicycle, IV pole or rollerblades. Skateboards, wagons and golf carts are welcome as well. And if you’re really cool maybe you can find one of those soap box derby cars. Any metaphorical wheels will do!
Maybe we can’t take the path we planned on, but we will find another route. And wherever we need to end up, we will get there.
What’s that saying? Have wheels will travel?
Alright then. Let’s roll.
Finding my Miracle 
I have RA and I felt the same when I bought my cane. Limping is extremely tiring and slow, plus I was falling I lot. Being able to walk faster, further and not fall was such an improvement in my quality of life.
I read your article on themighty.com about your doctor telling you you were doing a good job managing your illnesses. It has helped me a great deal and I bookmarked it to read whenever I’m down and feeling overwhelmed. Doctors don’t always realize what a difference a few encouraging words can make.
Thanks for the comment, Wendy! I’m touched to know that my article resonated with you and I’m also happy to know that you’ve found mobility aids to make your life a little easier!
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While you’re waiting for the hoops to stop spinning, try calling the local churches. When I was non-weighbearing after a nasty knee surgery, I was able to borrow a pretty nice, lightweight wheelchair from a local church. It was a Godsend!
Thanks for the tip! I have a wheelchair on loan right now from the Red Cross…it’s just not a perfect solution. But I actually just today (after several more phone calls of course haha) got an appointment with an OT so the ball is rolling.
I came across your blog because I belong to several invisible illnesses sites. 4 years ago I was diagnosed with Churg-Strauss Syndrome and nearly died. A disease like this changes you. I used to be such a happy, upbeat person but not anymore. My family jokes I’m like Grumpy from Snow White. I’ve read many pages of your blog and don’t understand how you do it. Really? How do you do it? I’m hoping that some of what you have may rub off of me. But I’ll worn you. If I come across rude or whatever It’s just the pain talking. I also tend to be very cynical. (think House MD) Who knows, with some time, all that may change.
I’m really sorry that you’ve lost your upbeat spark since becoming sick. I’ve gone through periods where I’ve lost my own spark and sometimes that seems worse than the physical illness itself. I wish I had a secret for keeping my spirits up but I don’t. I let myself feel sad and angry when I need to, but I make an effort to find the good in things and laugh when I want to cry. Chronic pain is exhausting, though, so I don’t blame you for feeling grumpy and cynical. I sincerely do hope, though, that over time you start to see bit and pieces of your old self come back! Hang in there.
A lot of times, after proving you use a wheelchair you can bargain with your insurance for a lighter more modern one (particularly if you cite that you could lift a modern one). After that, get the seat and back cushions replaced. Seriously, it made a world of difference for my mom and she’s better able to wheel herself for periods of time. @SpoonShares bloggess can also attest that having a few driving pros pushing you around can make a world of difference!
Sandy I am so happy that I was able to bring you a little bit of optimism and hope! Those two things really can make all the difference. I hope you find little pieces of optimism and hope every day 🙂
I happened upon your article quite by mistake. However, when you quoted your doctor as telling you that ” you were doing a good job “..my heart burst. With tears and joy and pride!! So often in this daily battle against our enemy illnesses, we become so very lost in the ability to see or feel anything positive. Yours words today gave something very precious to me…optimism. A new outlook of my surroundings. Peace, love, joy, and most of all..Hope.
Thank You for your beautiful, shining spirit.
Sandy
Bravo Catherine.
I have been a medical student, worked in laboratories, and then made a career switch to educating special needs students. Having a hearing loss by birth, I can totally resonate with your idea of pushing past the limitation rather than making the aid your limitation—so true.
I do hope you are able to get your own ‘electric’ wheelchair that would give you great freedom to move around. Just read your article on The Mighty as well.
Keep inspiring, and yes I am travelling with you on the metaphorical wheels! Good luck!
Thank you Khaula! I’m very happy to have you rolling with me on wheels of your own!
You are so beautiful!
Back at ya lovely!
You are incredibly positive. People should pity us more when we are stuck indoors due to our conditions rather than pity us more when they see us finding ways for us to get out and experience life! And on that note, I really wish that chronic/invisible illness was more well known, as I’m sure I (and I’m sure many others) have gotten some odd looks when I was out in a wheel chair and when I am now out with my cane… you know, since we look “fine” we are okay!
Agreed! But happy to hear that you too are finding ways to get out and about and make this all work for you
Catherine – I agree , I agree. You put it all so well, that look of shock some people give you when they see you in a wheelchair, I have seen it too. I have Complex Regional Pain Syndrome and can’t walk without crutches, can’t go far on the crutches either. After 8 years my shoulders started complaining big time with inflammation and tendon tears, using crutches all the time was no longer viable, nor was my knee walker as my knee had grown bone spurs. So 6 months ago I bought a small electric wheelchair and use it all day every day around the house and studio. I love it, I can do so much more for myself.
There is a common phrase I have heard over the years which goes something like this- “I’m not going to end up in wheelchair, I just won’t have that!”
It is this sort of negative belief that influences people’s reactions when they see me in my wheelchair. Like you I don’t want pity, I am still the same person, I still have a life despite my pain and limitations, I just get around differently.
Let’s break down the stigma. I am so lucky to live in a country where I can have such a wonderful piece of equipment as my little wheelchair.
Your writing inspires -keep it up.
Hey Rosemary – loving the overall feeling of your comment and I love that you’ve been able to find ways to adapt your life to meet the challenges of your CRPS. I went to your website and was reading your story and my heart is aching for you because there is nothing more exhausting than chronic pain! All I can say is kudos to you for putting your story out there! You will never know the extent of people who you have touched by doing so.
Thanks for taking the time to read my story and thanks for your positive comments.
What a wonderful positive attitude you have. God bless you my dear friend and may you find joy in your new independence.
Thank you so much!
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