Wednesday, June 25, 2014

What Helps: Mobility Aids



This post is partly courage-training and partly the continued story of metamorphosis. Getting over that first hurdle—physically and mentally—to start using a mobility aid can be daunting so I wanted to share my experience. Many years ago, a lifetime ago even, I was a gymnast. I was the tallest on my team but I was a powerhouse. Floor and vault were my events. Let’s pretend uneven bars never happened. I used to soar in the air. We had a trampoline in our backyard and I would experiment and create new tricks all of the time. I remember what it feels like to fly.

For years, I was an avid hiker. My husband and I live two hours away from Yosemite National Park, and we would go hiking often, usually difficult, all-day hiking. On the long way up, sometimes you question why the hell you would ever choose such torture, but when you get to the top you feel exhilarated because you literally just-climbed-a-motherhumping-mountain.

Having to use a mobility aid before my geriatric years wasn’t my plan. Not everyone with POTS/dysautonomia needs a mobility aid, but some may be dependent on them. With dysautonomia, the body is struggling to maintain homeostasis and keep blood moving to essential organs, so movement and exercise can be exhausting and taxing. Gravity is a bitch for the vertically challenged, and sometimes the only way to be mobile and leave the house is to use a mobility aid. When the realization sets in that some kind of mobility aid is needed, it’s a disappointing and scary prospect. The physical struggle can pale in comparison to the emotional struggle to accept having to rely on a mobility aid. This is an invisible illness, and when you take that first step to get aid, it is no longer invisible, and some may question why you would need it if you “look fine.” Whatever our preconceived notions are about what disability and illness “looks like,” those notions are wrong.

I suddenly started having trouble walking a year ago. Since the POTS started, I have struggled to be able to stand still for any length of time but I could walk. Walking more than 30 feet at this point is extremely exhausting and precarious. My doctors have told me that the walking issue is not related to dysautonomia, so I am once again on the long road to diagnosis to figure this mystery out. Comorbidity and compounded illnesses are typical with dysautonomia.

I started using a cane in November last year, but I needed one long before that. Almost all dysautonomiacs have been told by some doctor somewhere somehow that it’s “all in your head.” Being told this when you are unable to function as a human being can permanently warp how you mentally navigate your disorder unfortunately. Unraveling the stranglehold this kind of invalidation has on your psyche can be a battle. I'm still trying to unravel it, so I spent months trying to pretend it wasn’t happening and believing that it was all in my head. 

When I finally relented and bought the cane, I was relieved. It has made getting around much
Sitting FTW!!
easier and I use it almost all of the time.  I also put off getting a disability placard and it has also changed my life. On the bad days, the VIP parking makes all the difference. I’m learning to let go of my pride and let my desire for a higher quality of life take over. The walking problem has worsened so I upgraded (downgraded?) to a walker, and I am also using a wheelchair. I can either leave my house more and use my wheelchair or walker or I can try to walk longer than 10 minutes and have to spend the next few days bedridden. Those are the breaks. Now I have to figure out how to decorate them. I bought my cane and wheelchair at a local medical supply store, but there are some websites with mobility aids, and I really want a cane from fashionablecanes.com.

For the chronically ill. you’ll encounter a variety of responses in the world when you have your cane, walker, wheelchair, etc. You’ll get
1.      Double-takes: “Why does she need that if she looks fine?” “Is that cane a fashion statement?” “Why is she pushing her grandmother’s walker?”
2.      Stares: Your days of blending in are over. At least look fabulous as people stare at you.
3.      Looks of terror: When people see me, sometimes they jump out of my way, rush to open the door, tear their children from my path. This comes from a place of kindness and can be pretty amusing.
4.      Questions: People will ask you about it. I don’t mind that much but I have never found a succinct way of explaining it. I was at a store with a friend recently and a guy said “You look too young to use that walker.” So I said “Oh, I’m older than I look. I’m actually 75.” Depending on how snarky I feel that day, my response varies. People will often ask if I was in an accident. Sometimes I’ll give them the 10 minute explanation of what is happening. They asked for it!
5.      Derision or Annoyance: This one is rare, but it can happen. If you are a human being in the world, you’ll encounter douchebags everywhere. Some don’t understand what it is to have an invisible illness and refuse to try to understand. These people have worse problems than needing a mobility aid. Try to smile at their ignorance.
6.      Sympathy: This one makes me the most uncomfortable. I don’t feel sorry for myself so please don’t feel sorry for me. I don’t mind if you want to hold the door open for me though.

This experience has given me a profound appreciation for the struggles of those who have been disabled their whole lives. Being disabled makes everything more complicated. Before this, I had no idea what the disabled went through on a daily basis. I had no idea how people treated them. I had no idea what a constant struggle it is. I had no idea how much people will focus on your difference. 

When I finally accepted that I needed a mobility aid, my life changed for the better, but I still resist every change along the way. I constantly tell myself “You can hold on to your pride and suffer and be home-bound, or you can get out in the world and try to live a more full life. You are not weak when you use resources. It takes an incredible amount of courage to take steps to protect your health.” Find the words you need to tell yourself to let go of whatever is standing in your way (no pun intended).


I may be kind of broken, but I can still do this
I may use a walker, but I’m still strong and athletic. Whatever abilities you had in the past do not matter anymore, but today does. Don’t let others' perceptions determine how you manage your health and the choices you make. You can take charge of your health and make a new life in the body you have now.   

12 comments:

  1. Thank you so much for this! I've been debating getting a mobility aid for those bad days so I can still be kind of functional. I've finally got past my pride enough to get a shower chair (I'm 22 and lived in a dorm at the time so it took a while)!

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    1. Thank you! You could try a cane. It really helps conserve energy

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  2. I have dysautonomia/POTS and I also have that feeling like the floor is moving. I have read that this vertigo type of feeling in people with POTS could be from not getting enough blood flow to the inner ears or the brain in general. I have seen many specialists for this including neurologists, ENT doctors, neuro-otologists and balance specialists and have not found another reason for this. I have been told it could be a type of migraine headache but I have it constantly to some degree or another.

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    1. I hope they can figure this out for you. It's incredibly frustrating on top of the POTS. When I get more answers I will share them. It is starting to look like an autoimmune condition like Myasthenia Gravis is causing it but nothing for certain yet

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  3. WOW! you can do a handstand? amazing and impressive. My 24 y.o. son has myasthenia gravis and your blog is helping me understand him so much better. thank you, thank you, for your honesty and for sharing with all of us who struggle to understand disability and the depression that comes with it. You are an angel here on earth!

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    1. Thank you so much! I can still do a handstand on a good day but I always regret it afterwards ;) Sorry to hear your son has MG but it's great that you are so supportive. It really makes all the difference.

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  4. I'm sure this would be very difficult to deal with. I'm glad mobility aids help you a lot. I'm sure this makes things much easier for you and aids help keep you safe when moving around. http://www.twincitystairlifts.com

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  5. I find myself leaning on things (walls or posts an such when standing still, shopping carts in the store no matter how little I am buying) and needing to sit and rest while I'm out more and more. I'm learning to listen to my body's cues when it's telling me I need to rest, but it's hard! I'm a single mom, so it's not just me I have to take care of. I've only got one and she's 14 now, but she has her own chronic illnesses and special needs of her own. In the past couple of months, I've caught myself thinking it'd be easier if I got a walking stick of some sort. But that emotional piece of it is holding me back. My daughter is already so scared on my bad days that I fear the visible sign will trigger her anxiety. It's bad enough that I've gotten to the point where I can no longer hide how awful I feel.

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  6. Hi! I enjoyed reading your blog, and I have a question for you, since I am I have only been diagnosed with POTS for the past couple of months. Most days I am pretty good and walking isn't really an issue; however, on my bad days, I am really bad. It feels like my legs could collapse at any second. I was thinking of asking my doctor if I should get a cane/crutch to help me on my bad days. My fear is that people are going to think I am lying, because like I said, most days I am good. On my good days, I sometimes even go for a run! But I don't want people to say with me something like "I saw you running the other day, why are you using a cane today? You're fine." What do you think?! Thanks!!

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    1. Thanks for stopping by! Definitely talk to your doctor about it. It is an extremely difficult hurdle to get over to make that transition to start using mobility aids. When I started using the cane, I'd have days sometimes where it wasn't too bad and I might have been able to not use it, but I always did. Even if you think you're having a good day, the cane offers some support and can help you conserve energy. You could just try it out for a bit and see if it helps you before you fully commit. It's unfortunate that we have to worry about derision from others when it comes to doing what we have to do, but we have to try to rise above other's ignorance of our condition and potentially use it to educate people. What's most important is that we use whatever is available to us to manage our illness. I wish you all the best!

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    2. Thanks for stopping by! Definitely talk to your doctor about it. It is an extremely difficult hurdle to get over to make that transition to start using mobility aids. When I started using the cane, I'd have days sometimes where it wasn't too bad and I might have been able to not use it, but I always did. Even if you think you're having a good day, the cane offers some support and can help you conserve energy. You could just try it out for a bit and see if it helps you before you fully commit. It's unfortunate that we have to worry about derision from others when it comes to doing what we have to do, but we have to try to rise above other's ignorance of our condition and potentially use it to educate people. What's most important is that we use whatever is available to us to manage our illness. I wish you all the best!

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  7. Really very interesting and very valuable information about the mobility aids rating nice work.



    mobility aids rating

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