Advice needed for purchasing crutches and dealing emotionally and functionally with a minor disability.
December 26, 2009 1:08 PM Subscribe
Advice needed for purchasing and using a pair of forearm crutches, and how to deal better, functionally and emotionally, with what I guess could be termed a minor disability.
This is a three-part question. I don't know how to ask this in a succinct way, so I'm going to go the TMI route in hope for the best pertinent answers.
I have a condition that results in pelvic girdle and low back that fluctuates according to my hormone levels or how badly I've stressed the area. Specifically, I have sacroiliac joint dysfunction, osteitis pubis, and lumbosacral pain all due to hypermobility. I've had most of this for going on four years now. It resulted from my pregnancy.
After having gone through physical therapy, sometimes I'm just fine, with no pain at all, and things are firmly in the right place. During these times, I'm somewhat limited in what I can physically do. I have to take care not to move wrongly, too quickly, or with jarring movements. Leaning, twisting, driving, and uneven sitting and weight bearing all have potential to cause problems, but I am able to do it to some degree. I'm able to lift light weight. When I do move imperfectly during these times, by body is better able to absorb it. I'm able to walk longish distances.
Sometimes something is just wrong enough to cause a deep ache, which additionally limits my movements. Being on my feet for very long, such as through a grocery shopping trip, causes a good deal of discomfort and fatigue. I'm must be careful in how, and how much, I move. My chances of exacerbating it to the point of significant pain is significantly increased.
Sometimes something is very wrong, and I get severe, sharp pains with the wrong movement, which can include taking steps, turning over in bed, bending, being wrongly positioned, or standing with weight unevenly distributed. During these times I lay on my back as much as possible, trying to minimize the length of time I'm incapacitated and in pain by trying like hell not to aggravate anything. I get treated, and I slowly recover.
---
I spent most of my pregnancy on my back and on crutches, months afterwards not much better, and have had frequent, repeated down times. My husband has taken on a heavy burden because of it. He has had to clean, take care of our little girl when I couldn't, cook when I couldn't, move us to two different homes, take care of me and so much more.
In July I put myself through four weeks of physical therapy, and have exercised and done my physical therapy nearly every day since then. It changed my life. I went through a long period of time with little to no pain, able to do things I hadn't in years. I've recently become more hypermobile, however, with the result being an increase in down time again. I accepted a couple of days ago that this is going to be the nature of it, for the rest of my life. It won't go away even with perfect maintenance, and it will probably get worse.
I'm sick of being afraid to move, of being unable to go places because I cannot walk far or sit long, and of creating more burden for my husband. I've decided it's time to stop running up against the wall, accept what is, and accomodate for it more than we have.
Some things we'll be implementing are: a shower bench and detachable shower head, cat litter boxes raised on a shelf, a chair in our little girl's room to allow me to read books to her and rock with her without having to get down on the floor, ordering groceries online when necessary, paying a professional to come in and clean our bathrooms every once in a while, eventually moving to a place with accessible laundry, and sucking it up and using my crutches on occasion.
The crutches are the sticking point. I often don't know what my body is going to do. I usually know when I'm absolutely okay and can leave the crutches at home, but there are other times when I just can't predict. I can walk around and be fine with maybe a twinge or two, walk around and be sore, or walk a quarter of the way in to where I'm going to get hit by pain and be nearly unable to make the (seemingly miles-long) walk to get back out again. (From recent experience, the most likely is being sore, which leads quickly to outright pain, and incapacitates me for several days afterwards.) I would feel like an ass using crutches when I don't need to. Along the same lines, I would be horrified if a friend were to see me, be more than a little surprised, and ask. How do I justify using crutches if I'm not in debilitating pain at that very moment? I'd feel like an absolute hypochondriac wimp of a drama queen looking for pity and attention by overblowing the whole thing. I mean, a large percentage of the population has low back pain, and you don't see all of them going around on crutches, do you? And then there are the complete strangers who feel the need to ask "Oh, what happened to your foot?"
I have a pair of axilliary crutches that are awkward as hell, and I've read that forearm crutches are lighter, less awkward, easier to use on stairs, and would allow me to use my hands. This appeals very much to me. (I think it's pertinent here to mention that in the U.S., forearm crutches are used almost exclusively by people with permanent disabilities, and this has exacerbated the emotional implications for me.)
My questions are:
A. What do I look for in purchasing a pair of forearm crutches for occasional use, but that would need to take me long distances in comfort when I do use them? Is this something where I should avoid getting a drugstore cheapie, and instead go the online route? Are they even appropriate for significant weight-bearing use? Am I making the right choice? What else do I need to know that I haven't thought of?
B. Can you throw out some suggestions for other accommodations I might make for myself?
C. Please help me change my perspective and stop being horrified at being caught using the crutches, feeling like I'm blowing things all out of proportion, and feeling as if I'm pretending being disabled? Alternatively, please tell me if I really am blowing things all out of proportion.
This is a three-part question. I don't know how to ask this in a succinct way, so I'm going to go the TMI route in hope for the best pertinent answers.
I have a condition that results in pelvic girdle and low back that fluctuates according to my hormone levels or how badly I've stressed the area. Specifically, I have sacroiliac joint dysfunction, osteitis pubis, and lumbosacral pain all due to hypermobility. I've had most of this for going on four years now. It resulted from my pregnancy.
After having gone through physical therapy, sometimes I'm just fine, with no pain at all, and things are firmly in the right place. During these times, I'm somewhat limited in what I can physically do. I have to take care not to move wrongly, too quickly, or with jarring movements. Leaning, twisting, driving, and uneven sitting and weight bearing all have potential to cause problems, but I am able to do it to some degree. I'm able to lift light weight. When I do move imperfectly during these times, by body is better able to absorb it. I'm able to walk longish distances.
Sometimes something is just wrong enough to cause a deep ache, which additionally limits my movements. Being on my feet for very long, such as through a grocery shopping trip, causes a good deal of discomfort and fatigue. I'm must be careful in how, and how much, I move. My chances of exacerbating it to the point of significant pain is significantly increased.
Sometimes something is very wrong, and I get severe, sharp pains with the wrong movement, which can include taking steps, turning over in bed, bending, being wrongly positioned, or standing with weight unevenly distributed. During these times I lay on my back as much as possible, trying to minimize the length of time I'm incapacitated and in pain by trying like hell not to aggravate anything. I get treated, and I slowly recover.
---
I spent most of my pregnancy on my back and on crutches, months afterwards not much better, and have had frequent, repeated down times. My husband has taken on a heavy burden because of it. He has had to clean, take care of our little girl when I couldn't, cook when I couldn't, move us to two different homes, take care of me and so much more.
In July I put myself through four weeks of physical therapy, and have exercised and done my physical therapy nearly every day since then. It changed my life. I went through a long period of time with little to no pain, able to do things I hadn't in years. I've recently become more hypermobile, however, with the result being an increase in down time again. I accepted a couple of days ago that this is going to be the nature of it, for the rest of my life. It won't go away even with perfect maintenance, and it will probably get worse.
I'm sick of being afraid to move, of being unable to go places because I cannot walk far or sit long, and of creating more burden for my husband. I've decided it's time to stop running up against the wall, accept what is, and accomodate for it more than we have.
Some things we'll be implementing are: a shower bench and detachable shower head, cat litter boxes raised on a shelf, a chair in our little girl's room to allow me to read books to her and rock with her without having to get down on the floor, ordering groceries online when necessary, paying a professional to come in and clean our bathrooms every once in a while, eventually moving to a place with accessible laundry, and sucking it up and using my crutches on occasion.
The crutches are the sticking point. I often don't know what my body is going to do. I usually know when I'm absolutely okay and can leave the crutches at home, but there are other times when I just can't predict. I can walk around and be fine with maybe a twinge or two, walk around and be sore, or walk a quarter of the way in to where I'm going to get hit by pain and be nearly unable to make the (seemingly miles-long) walk to get back out again. (From recent experience, the most likely is being sore, which leads quickly to outright pain, and incapacitates me for several days afterwards.) I would feel like an ass using crutches when I don't need to. Along the same lines, I would be horrified if a friend were to see me, be more than a little surprised, and ask. How do I justify using crutches if I'm not in debilitating pain at that very moment? I'd feel like an absolute hypochondriac wimp of a drama queen looking for pity and attention by overblowing the whole thing. I mean, a large percentage of the population has low back pain, and you don't see all of them going around on crutches, do you? And then there are the complete strangers who feel the need to ask "Oh, what happened to your foot?"
I have a pair of axilliary crutches that are awkward as hell, and I've read that forearm crutches are lighter, less awkward, easier to use on stairs, and would allow me to use my hands. This appeals very much to me. (I think it's pertinent here to mention that in the U.S., forearm crutches are used almost exclusively by people with permanent disabilities, and this has exacerbated the emotional implications for me.)
My questions are:
A. What do I look for in purchasing a pair of forearm crutches for occasional use, but that would need to take me long distances in comfort when I do use them? Is this something where I should avoid getting a drugstore cheapie, and instead go the online route? Are they even appropriate for significant weight-bearing use? Am I making the right choice? What else do I need to know that I haven't thought of?
B. Can you throw out some suggestions for other accommodations I might make for myself?
C. Please help me change my perspective and stop being horrified at being caught using the crutches, feeling like I'm blowing things all out of proportion, and feeling as if I'm pretending being disabled? Alternatively, please tell me if I really am blowing things all out of proportion.
You are not an idiot.
It is nobody's business why you have crutches.
If nosy people ask you can happily give them some non-answer like "Oh, I'm not feeling too good today".
What they think about that is not your problem.
posted by emilyw at 3:34 PM on December 26, 2009
It is nobody's business why you have crutches.
If nosy people ask you can happily give them some non-answer like "Oh, I'm not feeling too good today".
What they think about that is not your problem.
posted by emilyw at 3:34 PM on December 26, 2009
Best answer: Unfortunately, I can only address the "What will people think??" question. I have met someone on several occasions, who on one occasion was in a motorized wheelchair, on a second occasion was using forearm crutches, on a third occasion walked across a room and stood unassisted for 15 minutes while giving a speech, and on a fourth occasion was in a standard, hand-propelled wheelchair.
I did not think, "What a wimpy, faking faker! She must be some kind of hypochondriac or malingerer!" What I did think was, "Hm, that's strange. She must have some kind of problem I've never heard about and therefore can't understand." If she had been, y'know, wearing a fake mustache and sunglasses when she was walking around unassisted, I might have been a bit suspicious, but the fact that she treated her mode of locomotion as a non-issue led me to assume it was just some physical condition I didn't understand, and I was satisfied with that self-generated explanation. Maybe there are some assholes who assume she's lazy when they see her in her scooter, but I think the vast majority of people are like me and take a sort of "I don't get it, but I assume it makes sense, and either way it's none of my business" agnostic approach.
In short: don't base your decision on the imagined reactions of others. For one thing, other people are less judgmental than you imagine; for another, this is your health, so screw what they think anyway. Easier said than done, I understand, but it should be kept in mind as a general premise.
And don't compare yourself to other people with back pain. I take ibuprofen when I have a headache; other people don't. Hell, I wear long pants in the winter, but every college campus has that one kid who walks around in shorts in 15-degree weather. Does that mean I'm a wimp and other people aren't? Or does it mean I'm flexible enough in my behavior and my attitudes that I'm able to adapt to the varying needs of my body and the varying environments I'm subject to?
Also, I'm sorry that you have to deal with this, and I hope you can stop criticizing yourself for things that are beyond your control -- it sounds like you're dealing with this admirably, and you don't deserve the negative self-talk you're inflicting on yourself!
posted by pluckemin at 3:42 PM on December 26, 2009 [1 favorite]
I did not think, "What a wimpy, faking faker! She must be some kind of hypochondriac or malingerer!" What I did think was, "Hm, that's strange. She must have some kind of problem I've never heard about and therefore can't understand." If she had been, y'know, wearing a fake mustache and sunglasses when she was walking around unassisted, I might have been a bit suspicious, but the fact that she treated her mode of locomotion as a non-issue led me to assume it was just some physical condition I didn't understand, and I was satisfied with that self-generated explanation. Maybe there are some assholes who assume she's lazy when they see her in her scooter, but I think the vast majority of people are like me and take a sort of "I don't get it, but I assume it makes sense, and either way it's none of my business" agnostic approach.
In short: don't base your decision on the imagined reactions of others. For one thing, other people are less judgmental than you imagine; for another, this is your health, so screw what they think anyway. Easier said than done, I understand, but it should be kept in mind as a general premise.
And don't compare yourself to other people with back pain. I take ibuprofen when I have a headache; other people don't. Hell, I wear long pants in the winter, but every college campus has that one kid who walks around in shorts in 15-degree weather. Does that mean I'm a wimp and other people aren't? Or does it mean I'm flexible enough in my behavior and my attitudes that I'm able to adapt to the varying needs of my body and the varying environments I'm subject to?
Also, I'm sorry that you have to deal with this, and I hope you can stop criticizing yourself for things that are beyond your control -- it sounds like you're dealing with this admirably, and you don't deserve the negative self-talk you're inflicting on yourself!
posted by pluckemin at 3:42 PM on December 26, 2009 [1 favorite]
Best answer: 1) I have never used crutches, so take this for what it's worth, but for when you *do* need them, they should be as comfortable, lightweight, and functional as you can afford. Having to fight with your crutches while you're already in pain is needlessly frustrating.
2) Accomodations:
First, be diligent in learning the physical signals for when you're reaching the limit beyond which the activity becomes incapacitating. It's annoying and (initially) incredibly disheartening to stop in the middle of an activity, but if you can ease the number of days you're totally out of commission, it'll help both physically and emotionally. It might help if you think of it as saving your energy for things you really want to be able to do later. Additionally, stop beating yourself up when you miss those signals and have a bad day following an activity. Lesson learned, move on.
In addition to your shower bench and detachable shower head, be sure to add a wall grab bar to help you stand or to steady yourself once up. If you also need one next to the toilet, get one. Ditto a raised toilet seat.
Rearrange your living/working space so that things you use all the time are within easy reach on your *worst* days, not your best days. If you don't already own one of those ez-reach grabber thingies, get one, and practice using it.
There are lots of suggestions online for modifying one's living space to deal with limited mobility; here's one and another here . Not all the suggestions will be applicable or useful for you, but they may give you ideas for simple adjustments that will make your day-to-day life easier.
3) The mental adjustment - acceptance, really - is the hardest part. You're not blowing the embarrassment you feel out of proportion - it is normal to everyone I've ever known who ended up with some sort of disability that requires accomodation. As humans, we find being outside the perceived 'norm' embarrassing and humiliating...needlessly so. The vast majority of people who see you using crutches are *not* judging it as some sort of moral failing on your part, any more than you've ever looked at someone in a wheelchair and thought *they* were faking it.
I've found it helps, when required, to view and discuss my needs briefly, dispassionately, and as simple facts - because that is all they are, the facts of your life. Your reality is that in order to do X, you need the crutches. There is no more need to be embarrassed by that fact than there is to be embarrassed by the need for keys in order to start your car.
If someone questions why you're on crutches when you weren't on crutches last week, assuming you want to answer at all, answering with, "Yes, I need them today," is perfectly acceptable, as is, "yes, I needed them last week, but not today." If someone asks "what happened to your foot," you don't need to give them your medical history - just answer simply, "I need the crutches to walk today." The person in that conversation who is going to feel embarrassed isn't you (which is not to be read as advocating embarrassing other people deliberately, which I am definitely not doing. I can attest though, that thoughtlessly asking a question like that makes one feel like a complete clod).
It's difficult to accept that our bodies don't respond the way we want them to...that we can't easily do the things we once did without thought or effort. It forces us to acknowledge our vulnerability and worse, in a society that prizes independence, our dependence. If you can flip your thought processes around to recognizing that using the crutches gives you a tool to use in remaining independent and active (as opposed to being confined to your bed or couch), it may help.
Reaching a comfort level with your accomdation needs isn't going to happen overnight; it takes time, a bit of backsliding, and a whole lot of patience with yourself. I really do believe, however, the more comfortable *you* are with your needs, the more comfortably people around you will feel responding to those needs.
Good luck.
posted by faineant at 3:55 PM on December 26, 2009 [3 favorites]
2) Accomodations:
First, be diligent in learning the physical signals for when you're reaching the limit beyond which the activity becomes incapacitating. It's annoying and (initially) incredibly disheartening to stop in the middle of an activity, but if you can ease the number of days you're totally out of commission, it'll help both physically and emotionally. It might help if you think of it as saving your energy for things you really want to be able to do later. Additionally, stop beating yourself up when you miss those signals and have a bad day following an activity. Lesson learned, move on.
In addition to your shower bench and detachable shower head, be sure to add a wall grab bar to help you stand or to steady yourself once up. If you also need one next to the toilet, get one. Ditto a raised toilet seat.
Rearrange your living/working space so that things you use all the time are within easy reach on your *worst* days, not your best days. If you don't already own one of those ez-reach grabber thingies, get one, and practice using it.
There are lots of suggestions online for modifying one's living space to deal with limited mobility; here's one and another here . Not all the suggestions will be applicable or useful for you, but they may give you ideas for simple adjustments that will make your day-to-day life easier.
3) The mental adjustment - acceptance, really - is the hardest part. You're not blowing the embarrassment you feel out of proportion - it is normal to everyone I've ever known who ended up with some sort of disability that requires accomodation. As humans, we find being outside the perceived 'norm' embarrassing and humiliating...needlessly so. The vast majority of people who see you using crutches are *not* judging it as some sort of moral failing on your part, any more than you've ever looked at someone in a wheelchair and thought *they* were faking it.
I've found it helps, when required, to view and discuss my needs briefly, dispassionately, and as simple facts - because that is all they are, the facts of your life. Your reality is that in order to do X, you need the crutches. There is no more need to be embarrassed by that fact than there is to be embarrassed by the need for keys in order to start your car.
If someone questions why you're on crutches when you weren't on crutches last week, assuming you want to answer at all, answering with, "Yes, I need them today," is perfectly acceptable, as is, "yes, I needed them last week, but not today." If someone asks "what happened to your foot," you don't need to give them your medical history - just answer simply, "I need the crutches to walk today." The person in that conversation who is going to feel embarrassed isn't you (which is not to be read as advocating embarrassing other people deliberately, which I am definitely not doing. I can attest though, that thoughtlessly asking a question like that makes one feel like a complete clod).
It's difficult to accept that our bodies don't respond the way we want them to...that we can't easily do the things we once did without thought or effort. It forces us to acknowledge our vulnerability and worse, in a society that prizes independence, our dependence. If you can flip your thought processes around to recognizing that using the crutches gives you a tool to use in remaining independent and active (as opposed to being confined to your bed or couch), it may help.
Reaching a comfort level with your accomdation needs isn't going to happen overnight; it takes time, a bit of backsliding, and a whole lot of patience with yourself. I really do believe, however, the more comfortable *you* are with your needs, the more comfortably people around you will feel responding to those needs.
Good luck.
posted by faineant at 3:55 PM on December 26, 2009 [3 favorites]
Best answer: Your doctor can write you a prescription for the crutches, and then an expert at a medical supply store will help you find the right ones and orient you how to use them.
Absolutely don't be embarrassed about this. There are many disabilities that vary--I know people who fall into the category of people who sometimes use crutches and sometimes use wheelchairs, based on their energy and pain levels--and how much energy they want to preserve. Think of them crutches as a tool you can use to best manage your energy; if you start to use them you will recognize that they actually increase your independence and mobility.
If you have an invisible disability, or a variable one, people will not always know how to deal with you. That is their problem. Your job is only to do what is best for you.
I have lived with chronic pain for 15 years. Both the pain itself and my emotional ability to deal with it vary widely. It sounds like you're doing a great job of both maximizing your level of functioning and thinking about how to adapt. Be gentle with yourself.
posted by not that girl at 4:02 PM on December 26, 2009
Absolutely don't be embarrassed about this. There are many disabilities that vary--I know people who fall into the category of people who sometimes use crutches and sometimes use wheelchairs, based on their energy and pain levels--and how much energy they want to preserve. Think of them crutches as a tool you can use to best manage your energy; if you start to use them you will recognize that they actually increase your independence and mobility.
If you have an invisible disability, or a variable one, people will not always know how to deal with you. That is their problem. Your job is only to do what is best for you.
I have lived with chronic pain for 15 years. Both the pain itself and my emotional ability to deal with it vary widely. It sounds like you're doing a great job of both maximizing your level of functioning and thinking about how to adapt. Be gentle with yourself.
posted by not that girl at 4:02 PM on December 26, 2009
Best answer: Let me take a minute to explain where I am coming from. Fifty-two years ago, I was involved in a violent automobile accident that left me with serious, but nearly invisible spinal injuries. Like you, I have good days and days when all manner of aids and potions are needed to keep me upright.
Here are two important things I have learned:
First, 99% of all people you meet are so self-centered that they really don't care who you are or why you are in a wheelchair, on crutches, or whatever. We tend to externalize our own issues because they are so important to us. Others, however, just don't notice that you are very different. So don't think of yourself as being different. Nobody is keeping a checklist of how they saw you last week or yesterday. Close friends who notice are most likely to understand and file away the fact that you are switching around. They probably celebrate the days they see you more mobile, rather than criticize the days you are not. Anybody else? Not worth your time worrying about.
Second, there are several ways to skin a cat. For me, significant pain reduction came about through the use of an inversion table. This is the thing you see advertised on late night TV with some 70 year old guy hanging upside down. THIS IS NOT WHAT YOU WANT TO DO WITH IT! I get great relief from tilting just a little past level so the weight of my upper body applies a slight gentle traction to my spine. If you want to consider this, talk to your physical therapist about it and see if it can help you.
As to crutches, the above advice regarding having a professional help you choose them and adjust them for you is very important. This is much better for you than grabbing them from some drug store or over the internet and fiddling with them at home.
Last, after you get them home, consider decorating them with spray paint or yarn or something that makes them just a little bit more "you." Like flowers? Paint a few on them. Like purple? Go for it. It makes them a little less like an appliance and a little more like just a part of you. Be prepared for people commenting about how "cute" your crutches are instead of "what's wrong with you?"
Hang in there. It gets better.
posted by Old Geezer at 5:01 PM on December 26, 2009 [1 favorite]
Here are two important things I have learned:
First, 99% of all people you meet are so self-centered that they really don't care who you are or why you are in a wheelchair, on crutches, or whatever. We tend to externalize our own issues because they are so important to us. Others, however, just don't notice that you are very different. So don't think of yourself as being different. Nobody is keeping a checklist of how they saw you last week or yesterday. Close friends who notice are most likely to understand and file away the fact that you are switching around. They probably celebrate the days they see you more mobile, rather than criticize the days you are not. Anybody else? Not worth your time worrying about.
Second, there are several ways to skin a cat. For me, significant pain reduction came about through the use of an inversion table. This is the thing you see advertised on late night TV with some 70 year old guy hanging upside down. THIS IS NOT WHAT YOU WANT TO DO WITH IT! I get great relief from tilting just a little past level so the weight of my upper body applies a slight gentle traction to my spine. If you want to consider this, talk to your physical therapist about it and see if it can help you.
As to crutches, the above advice regarding having a professional help you choose them and adjust them for you is very important. This is much better for you than grabbing them from some drug store or over the internet and fiddling with them at home.
Last, after you get them home, consider decorating them with spray paint or yarn or something that makes them just a little bit more "you." Like flowers? Paint a few on them. Like purple? Go for it. It makes them a little less like an appliance and a little more like just a part of you. Be prepared for people commenting about how "cute" your crutches are instead of "what's wrong with you?"
Hang in there. It gets better.
posted by Old Geezer at 5:01 PM on December 26, 2009 [1 favorite]
Best answer: Because we know more about just about anything than actually managing pain effectively (and please, please talk to multiple people about pain management and don't feel bad about it), one of the kindest things you can do both for yourself and for the other people in your life is to practice preventative pain management.
This means: Use the crutches. Do LESS than you think you can do. Read this; it helped me explain things to both myself and others (including, in some cases, doctors).
And yeah..nthing only comparing yourself to yourself. It's just not worth it.
posted by eleanna at 5:21 PM on December 26, 2009
This means: Use the crutches. Do LESS than you think you can do. Read this; it helped me explain things to both myself and others (including, in some cases, doctors).
And yeah..nthing only comparing yourself to yourself. It's just not worth it.
posted by eleanna at 5:21 PM on December 26, 2009
Best answer: After a serious RTA, I walked with crutches for what felt like forever, and now walk with a walking stick when I'm having a bad day, if I will have to sit for a long time (concert, airplane) or if I'm going anywhere with stairs or unfamiliar terrain. So my perspective is a little different but maybe it will be of use.
1/ Because my use of the stick is also irregular, people ask me all the time "what happened?" and my answer is always "I'm fine. My hip is fucked today but don't worry about it." The "today" thing sort of sets it up as an intermittent thing, I think, and people rarely ask twice. I have a friend who, in no particular order, walks unassisted, walks with a cane, can't walk at all and uses a cart. Oh and I have another friend who walks with one arm crutch (polio, maybe?) but I never remember that because she's always so annoyingly glamorous I just want to know what foundation she's using and where she bought her dress. You are not your mobility devices; they are just accessories.
2/ A retractable walking stick has made it possible for me to bring it with me if I might use it without lugging something I am not using around with me in a way that makes me feel like an idiot. There are retractable crutches. They are not what you'd want to use when you know you need them, but they are great for those "halfway to the store and now I'm really fucked" times. You'd need to work out a carrying system (I bet someone on Etsy could make you something similar but in cooler fabric) but seriously... life saver.
3/ There are services for mobility impaired people. Use them. These services include mobility carts so you don't have to walk at the grocery store, assistance with shopping at the grocery store, curb to gate wheelchair assistance at the airport (those concourses are fucking long and exhausting), on-site wheelchairs at places like sport stadiums and Disney, and loaner wheelchairs from the American Red Cross when you need to do weird things like traverse an entire football field for your youngest sister's high school graduation. Again, find out what's available to you and use whatever sounds useful.
But in general, I think you are being too concerned with the rest of the world and not concerned enough about what's best for you. Do not expend precious energy trying to accommodate a world that is not so disability-friendly; do expect and demand that the world instead accommodate you.
posted by DarlingBri at 5:51 PM on December 26, 2009 [1 favorite]
1/ Because my use of the stick is also irregular, people ask me all the time "what happened?" and my answer is always "I'm fine. My hip is fucked today but don't worry about it." The "today" thing sort of sets it up as an intermittent thing, I think, and people rarely ask twice. I have a friend who, in no particular order, walks unassisted, walks with a cane, can't walk at all and uses a cart. Oh and I have another friend who walks with one arm crutch (polio, maybe?) but I never remember that because she's always so annoyingly glamorous I just want to know what foundation she's using and where she bought her dress. You are not your mobility devices; they are just accessories.
2/ A retractable walking stick has made it possible for me to bring it with me if I might use it without lugging something I am not using around with me in a way that makes me feel like an idiot. There are retractable crutches. They are not what you'd want to use when you know you need them, but they are great for those "halfway to the store and now I'm really fucked" times. You'd need to work out a carrying system (I bet someone on Etsy could make you something similar but in cooler fabric) but seriously... life saver.
3/ There are services for mobility impaired people. Use them. These services include mobility carts so you don't have to walk at the grocery store, assistance with shopping at the grocery store, curb to gate wheelchair assistance at the airport (those concourses are fucking long and exhausting), on-site wheelchairs at places like sport stadiums and Disney, and loaner wheelchairs from the American Red Cross when you need to do weird things like traverse an entire football field for your youngest sister's high school graduation. Again, find out what's available to you and use whatever sounds useful.
But in general, I think you are being too concerned with the rest of the world and not concerned enough about what's best for you. Do not expend precious energy trying to accommodate a world that is not so disability-friendly; do expect and demand that the world instead accommodate you.
posted by DarlingBri at 5:51 PM on December 26, 2009 [1 favorite]
I just want to add something about your shopping trips. Retail stores are required by law to help their shoppers with disabilities. Most have little signs that say something about letting them know if you need help. Ask for that help. I used to work in retail, and there was nothing nicer than getting out of doing my mind numbing work to help somebody do their shopping. Really. I helped little old ladies who couldn't reach higher shelves, I helped pregnant ladies who couldn't bend over and get stuff off the lower shelves, I helped people on crutches, in wheelchairs, in neck braces, and with no visible disabilities. It was fun for me, and I felt good knowing that I was really helping someone else. So please, please ask for help. Call you grocery store ahead of time if you want, warn them that you're coming and that you will require assistance. They'll have one of the baggers follow you around and you can just read your list off to them, they'll be your gopher and get your stuff for you. You can push your cart or ride in one of the little shopping scooters. If it helps you avoid pain it is totally worth it!
posted by TooFewShoes at 6:15 PM on December 26, 2009
posted by TooFewShoes at 6:15 PM on December 26, 2009
Response by poster: Thank you so much everybody. Every answer here has been helpful. Keeping in mind that by doing this I'm being more active and less dependent will help quiet my own judgments about myself, and it helps to know that no, people don't really give a lot of thought to it.
Those retractable crutches are a fantastic option, if a bit expensive. I imagine it would be worth every penny. I'll get professional advice in choosing and fitting crutches, and go from there. And then I'll decorate the hell out of them.
TooFewShoes, I'm a little too mortified of asking for that kind of help yet. Instead, I've just avoided going out. I imagine that, in time, I'll have to get used to it. I've managed to ask a few times for help carrying heavy items to my car, so yay! for progress.
I may, some day, consider disability plates. I'm not ready to right now, and I'd never have considered it before today.
Baby steps.
posted by moira at 7:01 PM on December 26, 2009
Those retractable crutches are a fantastic option, if a bit expensive. I imagine it would be worth every penny. I'll get professional advice in choosing and fitting crutches, and go from there. And then I'll decorate the hell out of them.
TooFewShoes, I'm a little too mortified of asking for that kind of help yet. Instead, I've just avoided going out. I imagine that, in time, I'll have to get used to it. I've managed to ask a few times for help carrying heavy items to my car, so yay! for progress.
I may, some day, consider disability plates. I'm not ready to right now, and I'd never have considered it before today.
Baby steps.
posted by moira at 7:01 PM on December 26, 2009
I would like to offer two things for perspective shifting, that may or may not be helpful.
1. ability/disability are not categorical opposites, but are relative, and both ability and disability are experienced by pretty much everybody in their lifetimes.
2. ability/disability is not about a specific individual, but is defined contextually. Disability occurs when society is organized in a way which excludes certain people. What you experience as "disability" is the exclusion you experience because society has not been organized in an inclusive way such that you would experience "ability".
In accessing services or accommodations you are merely acting in the way that anyone would to deal with the fact that society is set up in such a way as to exclude just about everybody at some point in their life. You are who you are, and there's nothing wrong with you or what you're doing. Hang in. You can do it!
posted by kch at 7:46 PM on December 26, 2009
1. ability/disability are not categorical opposites, but are relative, and both ability and disability are experienced by pretty much everybody in their lifetimes.
2. ability/disability is not about a specific individual, but is defined contextually. Disability occurs when society is organized in a way which excludes certain people. What you experience as "disability" is the exclusion you experience because society has not been organized in an inclusive way such that you would experience "ability".
In accessing services or accommodations you are merely acting in the way that anyone would to deal with the fact that society is set up in such a way as to exclude just about everybody at some point in their life. You are who you are, and there's nothing wrong with you or what you're doing. Hang in. You can do it!
posted by kch at 7:46 PM on December 26, 2009
I know you feel mortified, but try to think of it from the other person's point of view. You are getting them out of work! Yay! Maybe you could even give them a little tip after and then you'll totally make their day. So don't be embarrassed, think of it as being generous.
posted by TooFewShoes at 9:03 PM on December 26, 2009
posted by TooFewShoes at 9:03 PM on December 26, 2009
I'm hypermobile too. I don't use crutches yet, but I have to use a variety of braces to keep things in place. I was hesitant to wear them in public because it made my disability visible. I knew people would ask about them and I didn't want to admit I had a problem to myself, much less strangers on the street and random grocery clerks.
I needed them to get by, though, so sucked it up and wore them. And I was right, a lot of people asked about them. I used to get really flustered, but eventually I answered the same questions so many times it became routine.
Really, though, I got the most questions the first couple of months after I started wearing them. I was self-concious about them and I think people picked up on that. I was also getting used to how they worked and felt, so I'd mess with them all the time. Now I've grown so used to them that they feel natural. Random people are as likely to comment on my cool clothes as they are to ask about my splints. I also made it a point to talk to my friends and most of my family about my disability so they understood what was going on, and why I sometimes showed up in a sling or a brace. Nobody thought any less of me for using the tools I need to use to take care of myself.
Hypermobility is the hardest thing I've ever had to deal with. You're certainly not blowing things out of proportion. You're doing the right thing by looking into ways to make life easier and by taking care of yourself.
posted by Kicky at 9:13 PM on December 26, 2009
I needed them to get by, though, so sucked it up and wore them. And I was right, a lot of people asked about them. I used to get really flustered, but eventually I answered the same questions so many times it became routine.
Really, though, I got the most questions the first couple of months after I started wearing them. I was self-concious about them and I think people picked up on that. I was also getting used to how they worked and felt, so I'd mess with them all the time. Now I've grown so used to them that they feel natural. Random people are as likely to comment on my cool clothes as they are to ask about my splints. I also made it a point to talk to my friends and most of my family about my disability so they understood what was going on, and why I sometimes showed up in a sling or a brace. Nobody thought any less of me for using the tools I need to use to take care of myself.
Hypermobility is the hardest thing I've ever had to deal with. You're certainly not blowing things out of proportion. You're doing the right thing by looking into ways to make life easier and by taking care of yourself.
posted by Kicky at 9:13 PM on December 26, 2009
Best answer: Get them adjusted for you by a pro, it matters.
Be careful not to get carpal tunnel from the handles; I've done it.
posted by unrepentanthippie at 10:26 PM on December 26, 2009
Be careful not to get carpal tunnel from the handles; I've done it.
posted by unrepentanthippie at 10:26 PM on December 26, 2009
moira, I'm just going to add that I highly recommend you learn to ask for and accept help. This was one of the hardest things for me! I'm a person with chronic pain and three small children, and I will still reflexively say, "Oh, no, I've got it," when someone sees me struggling with, say, bags of groceries and offers to help load the car, or like the other week when a visiting friend asked if I'd like her to spend a few minutes picking up my living room floor. "Oh, no, that's fine," I said, and then, "What the hell am I saying? Yes, if you spent ten minutes doing some picking up it would help me immensely."
One thing to keep in mind is that a lot of people like to help, especially friends and acquaintances. If you ask them for help with, say, getting the groceries bought, they will actually take it as a sign that you like and trust them. They'll be flattered that you feel close enough to them to ask them to help out. This was a surprise to me when it first happened.
I know it's hard. I resisted it so hard that the universe decided to spend about two years putting me into situations where I had no choice but to ask for help. "I think I've learned the lesson!" I kept saying, and then some new thing would come along...
That said, start where you are, and take the steps you're comfortable with.
posted by not that girl at 7:41 AM on December 27, 2009
One thing to keep in mind is that a lot of people like to help, especially friends and acquaintances. If you ask them for help with, say, getting the groceries bought, they will actually take it as a sign that you like and trust them. They'll be flattered that you feel close enough to them to ask them to help out. This was a surprise to me when it first happened.
I know it's hard. I resisted it so hard that the universe decided to spend about two years putting me into situations where I had no choice but to ask for help. "I think I've learned the lesson!" I kept saying, and then some new thing would come along...
That said, start where you are, and take the steps you're comfortable with.
posted by not that girl at 7:41 AM on December 27, 2009
Response by poster: I hope a few of you are still seeing this AskMe in your recents. Does anybody have tips on how to manage an energetic 3-year-old while on crutches?
posted by moira at 8:12 AM on December 29, 2009
posted by moira at 8:12 AM on December 29, 2009
Response by poster: What about shopping, taking walks, and crossing streets?
She's usually good about sticking close to me, but I make her hold my hand when crossing streets. How do I do that while on crutches? Do I take one off in order to hold her hand and proceed across? Is there a way to keep her safe? Do I strap her to me? She seems a bit old for that, and if she were to keep pulling on me, that would cause problems.
The crutches slow me down considerably, and I'm concerned she'll keep running ahead more than she does. Again, she's good about stopping if I tell her to, but the efficacy of that is going to go way down if the whole trip is full of "stop" and "stay close."
posted by moira at 9:48 AM on December 29, 2009
She's usually good about sticking close to me, but I make her hold my hand when crossing streets. How do I do that while on crutches? Do I take one off in order to hold her hand and proceed across? Is there a way to keep her safe? Do I strap her to me? She seems a bit old for that, and if she were to keep pulling on me, that would cause problems.
The crutches slow me down considerably, and I'm concerned she'll keep running ahead more than she does. Again, she's good about stopping if I tell her to, but the efficacy of that is going to go way down if the whole trip is full of "stop" and "stay close."
posted by moira at 9:48 AM on December 29, 2009
I've been hesitant to say this because you sound reluctant to just roll with this new disability, but you may find wrangling your child significantly easier with a mobility scooter. Crutches effectively rob you of your hands since you are using them to walk, which as you've already identified, causes significant issues.
A scooter, on the other hand, solves a lot of the problems you're pointing out. It's ideal for shopping with your child and solves your problems with getting there and being there, even on your own. They're also very stable, and leave at least one hand free for kid wrangling... and kid rides! I think there's a safety aspect as well - even at 3.5 MPH, you're going to be faster than your kid.
I suspect you'll hate this idea but I think it's worth thinking about to see how practical it might be as a well-rounded solution for you and your family. I think you can rent them if you want to try the idea out.
posted by DarlingBri at 3:07 PM on December 29, 2009
A scooter, on the other hand, solves a lot of the problems you're pointing out. It's ideal for shopping with your child and solves your problems with getting there and being there, even on your own. They're also very stable, and leave at least one hand free for kid wrangling... and kid rides! I think there's a safety aspect as well - even at 3.5 MPH, you're going to be faster than your kid.
I suspect you'll hate this idea but I think it's worth thinking about to see how practical it might be as a well-rounded solution for you and your family. I think you can rent them if you want to try the idea out.
posted by DarlingBri at 3:07 PM on December 29, 2009
Response by poster: Thank you for the suggestion. You're right, I can't imagine it at all. I still think of myself as just a person who is in pain sometimes. (Okay, frequently.) The scooter seems like so much overkill.
I'll keep my mind open to all the options here. As time goes by, I imagine these will become easier and/or more necessary.
posted by moira at 3:43 PM on December 29, 2009
I'll keep my mind open to all the options here. As time goes by, I imagine these will become easier and/or more necessary.
posted by moira at 3:43 PM on December 29, 2009
Best answer: You know, you've had a lot of major shifts in the past few years - you've become a mother and developed a physical limitation. That's a lot of identity changing to deal with. And I get - really - the reluctance to see yourself as a disabled person, but that is not the same thing as accepting yourself as a person with a disability. It may be cyclical or intermittent, but it is a disability and it is yours.
Even people who embrace parenthood sometimes struggle with the transition because transitions are hard. And many, many more people struggle with the transition to being less able than they used to. It's not what you pictured and it's probably not what you thought motherhood would look like either. It's possible you would benefit from some talk therapy to process the changes to your body and examine the way you see disability, people with disabilities and heck, even mobility aids.
Crutches are, frankly, a pisser. They give you the ability to walk at the expense of your hands; I hated them and was constantly, violently frustrated by them. The wheelchair was a huge relief because I could not only be places but do things. One walking stick is a no-brainer, but if my mobility ever deteriorates beyond that, I will choose a scooter over two walking sticks or two crutches any day - or at least any day I feel I need it.
I mean this as gently as possible and I have only what you've written to go on here, but I get the impression you invest a huge amount of energy in fighting against your disability and hanging onto a specific image of your self. Energy is finite and to people in chronic pain, is a precious resource; practical mobility aids just free up so much of that resource that it can be a glorious revelation as long as you're not hating the aids or yourself for embracing what you need when you need it. I don't know if you think that sounds like you, but I just wanted you to know it's very possible to get to a point where the aids are complete non-issues and the ability they buy you is pretty much pure upside.
Anyway, however you get where you're going, literally and figuratively, I hope it works out for you and you find tools that work for you and that you are happy with. Good luck!
posted by DarlingBri at 12:12 AM on December 30, 2009 [1 favorite]
Even people who embrace parenthood sometimes struggle with the transition because transitions are hard. And many, many more people struggle with the transition to being less able than they used to. It's not what you pictured and it's probably not what you thought motherhood would look like either. It's possible you would benefit from some talk therapy to process the changes to your body and examine the way you see disability, people with disabilities and heck, even mobility aids.
Crutches are, frankly, a pisser. They give you the ability to walk at the expense of your hands; I hated them and was constantly, violently frustrated by them. The wheelchair was a huge relief because I could not only be places but do things. One walking stick is a no-brainer, but if my mobility ever deteriorates beyond that, I will choose a scooter over two walking sticks or two crutches any day - or at least any day I feel I need it.
I mean this as gently as possible and I have only what you've written to go on here, but I get the impression you invest a huge amount of energy in fighting against your disability and hanging onto a specific image of your self. Energy is finite and to people in chronic pain, is a precious resource; practical mobility aids just free up so much of that resource that it can be a glorious revelation as long as you're not hating the aids or yourself for embracing what you need when you need it. I don't know if you think that sounds like you, but I just wanted you to know it's very possible to get to a point where the aids are complete non-issues and the ability they buy you is pretty much pure upside.
Anyway, however you get where you're going, literally and figuratively, I hope it works out for you and you find tools that work for you and that you are happy with. Good luck!
posted by DarlingBri at 12:12 AM on December 30, 2009 [1 favorite]
Response by poster: The point was driven home today when I tried to clean. I'm now in pain, in bed, when I was fine this morning.
I can see that I need to yield more.
Thank you, again.
posted by moira at 11:24 AM on December 31, 2009
I can see that I need to yield more.
Thank you, again.
posted by moira at 11:24 AM on December 31, 2009
This thread is closed to new comments.
posted by moira at 3:28 PM on December 26, 2009