Assistive Devices: An Emotional and Physical Journey

 

Disability.

Disability is an evil, nasty word that many people cringe at, because it means that you may not be able to do something you possibly once loved, either at all, or possibly unassisted. For me, it took a decade to emotionally and mentally accept that I’m partially disabled. Only a month ago, after my current flare reared its nasty head, I gave in and finally asked for Disabled Parking. This was already after I was on Short-Term Disability at work. My Rheumatologist, who I see every 3 weeks, laughed and said, “I was wondering when you would ask.”  Even using disabled parking is a conundrum for me because I sometimes feel there are some many more people who need that spot more than I do. Luckily, in San Antonio there is normally an overabundance of disabled parking spots and I’m never taking the last one.

Being in the midst of a flare that has lasted nearly three months now, I started having trouble walking. I normally have a slight limp even when I’m well, but this limp was becoming more pronounced and causing the opposite leg to have pain. Oh, the joys of secondary pain! I even fell once, because putting pressure on my left leg was excruciating and caught me off guard. I’m also quite clumsy! I’ve resisted the idea of a cane for years now. I didn’t want to be the 20-something girl walking with a cane. For me, it was a pride issue. You could easily say that 2011 has been a year of emotional acceptance of my limitations.

I did finally give in and I purchased a set of Guardian Forearm Crutches. I decided on the forearm crutches because of my instability on my feet and I wanted to have the option to use either one by itself, like a cane, or two if I wanted more equal stability. The forearm cuff helps offset the strain on my hands and because it does fit my forearm really well, I can still use the crutch if I need to say, swipe my security badge at work, without setting down the crutches. That being said, everywhere I have gone people have been very hospitable and opened doors or held them open for me.

My crutches have saved my life! I feel so much better and different when I’m using them. Not limping means less pain which means more energy (and spoons!) and I do feel like I could possibly participate in more activities. Before, limping to the break-room at work and then limping back to my desk always left me in pain. Now I can use my crutches and be in significantly less pain. The crutches are not without problems, though. Since I use both of them, 95% of the time (the other 5% I use just 1 crutch), there is the issues of I have no hands! Carrying my purse and lunch to work became an issue. I couldn’t just hang them from my crutches because they sway and hit my legs as I walk. Yesterday, I experimented and used my old messenger bag from school that if positioned just right is completely out of the way of my crutches. I was able to carry my purse necessities, snacks, medications, and lunch to work and still able to maneuver with the crutches. It was a beautiful thing. I’m still adjusting to them, but as I said to someone else: “I now understand why they are called ASSISTIVE devices!”

Article written by Staff Writer, Ashley Morgan.

Ashley has been diagnosed with Fibromyalgia since 2005 after spending five years undiagnosed and many misdiagnoses. Other secondary diagnoses include: Lupus, Hyper-mobility Syndrome, and Sjögren’s Syndrome. Originally from Glendale, California, she now calls San Antonio, Texas home. In her spare time she enjoys volunteering with youth at her Church and spending time with her husband and step-sons.  She can be found on Twitter at @Ashiemorgan

©2019butyoudontlooksick.com
  • Abigail

    I will add it my addaptive device story.

    I am 29 and have fibromyalgia, as well as a few other various hidden illnesses (28 when diagnosed, though probably had it as “young” as 23). My mother had fibro, bipolar disorder, diabetes, COPD..the list went on and on. She used canes when walking, and had a scooter that fit in the back of our van, with a lift permanantly attached inside. When I was young, it was part of my job – Mom has a therapist appointment? Get her up, get her moving, drive her, get the scooter out, wait, get her back to the van, get the scooter back in, get her home, get her inside, get her to bed…I’m sure you all know what I’m talking about.
    As my fibro progressed, I discovered that despite my best efforts, there were days I was afraid to get out of bed because I felt so light headed and dizzy I was sure I would faceplant on the ground. If I don’t shift position enough times, standing up would cause a massive flare on one side of my body. Again, you all know what I mean.
    While looking on Amazon one day, I found forearm crutches. It was like a hammer hitting me in the head. I have days where I can’t walk without looking as though I have had too many martini’s, yet I can’t call in to work with the reason being “I’m too dizzy” – despite my boss knowing I have a chronic illness. As a whim, I ordered a pair. I could finally walk without planning on where a wall, desk, or chair are! And while the crutches earn me “that look” from people, it means that I am here, at work, being productive.
    Yup, I’m 29. Yup, I’m too “young” to have to deal with all this. Yup, people have told me it’s all in my head.
    And yup, when I need to, I use my crutches..and remember that they can be used to smack someone else in the leg if they give me a hard time!

  • Lucky

    Sandy,

    I know it is a few days after your original post, but I would recommend trying Melatonin in the future. I have had doctors prescribe me antidepressants to help with sleep, but I always experienced terrible side effects from them. Then, one of my doctors recommended that I take Melatonin before bed. It doesn’t interact with the multitude of other medications I ingest, and it doesn’t make me feel hung over in the morning.

    *****

    On the topic of assistive devices, I, at the age of 28, recently got a handicapped parking placard. Like many of you, I also only use it on my really bad days because I feel like someone else might need the handicapped parking space more than I do. When I do use it, I feel self-conscious because my disability isn’t visible; I feel like people might judge me for not looking sick. (I could totally relate to the article on this site about this vary topic.)

    Recently, my family and I attended an event at our city’s convention center. My mom begged me to use a wheelchair, but I didn’t want to burden my family with pushing me. Days afterward, I am still suffering from all the walking I did that day. My mom keeps telling me I learned my lesson and should use a wheelchair in the future. I just feel guilty for making my family push me …

    I had a breakdown tonight about living with chronic pain. Every once in a while, it feels therapeutic to let it all out and cry. To cheer myself up, my husband and I watched a funny TV show and I turned to this website. I can’t express how helpful it is to have a community full of people who understand what I’m experiencing on a daily basis. I can’t count the number of times people have said they can’t believe I have endured so many surgeries and treatments at my age. Their comments only make me feel worse. I am glad I have discovered, through this site, that there are other 20-somethings like me.

  • Cathy Storm

    Ashley, thank you for starting this topic and getting the point out. To save the pain by using an assistive devise, can give energy to have enjoyment for an activity later. Or have the strength needed to put the WalMart purchases away when you return from the miles of walking in the hugh store. The responses all had heartfelt real life circumstances that any of us dealing with (but you don’t look sick) invisible illness’s everyday of our lives, have had at one times another.
    This is a wonderful site to come to for compassion and understanding.

  • Sandy

    I hate using my cane or the carts at the grocery store/Wal Mart. I think it draws attention to me when I could otherwise be ignored. But Somedays, I just have to bite the bullett and do it! I usually have more energy after the event but I hate the stupid stares of ignorant, rude people. I fell like yelling “Take a picture, it will last you longer!” And children are so uncontrolled by parents these days! Running inside any building at all when I was growing up was grounds for a spanking right there on the spot! I have been sent reeling across aisles and other open spaces by out of control, loud mouthed kids running in a building! I actually stuck my cane out in front of an obnoxious teenager one time in a shoe store. He bit the dust big time! The best thing was, he did not realize I had tripped him! He attributed it to careless running!
    I can’t sleep lately. I know this is off the subject but I need ideas to help me relax and sleep peacefully without popping 3 or 4 pills! Any good ideas out there tonight?? Thanks!

  • I can really relate to this. I to have been putting off the use of any devise because of pride and the fear of admitting that I am disabled. My friends keep telling me to use the battery carts when I go to the store, but I have not been able to bring my self to do it. I feel like that would make if final, that I AM disabled. I am having so much trouble accepting it. I want to hold on as long as I can.

  • Jenn

    Yup. I have had a pair since I was 18.. I have found a thousand ways around them.. and I got better with my non-dominant hand too..

    You can, if it’s light, use grocery bags to hand off th ehandles, too.. but naythign heavier than papers means you will get unbalanced.. and even then sometimes i manage ok like that.. Also, a contractor’s toolbelt can hodl cell phone.. etc.. and can be helpful

    Cargo pants are always fun with them as well. 🙂

    I can also hodl a half filled glass with these square plastic glasses I found at Wal-Mart… one finger held it tight to the crutch and I walk slow.. Plates are a big issues though.. but one crutch and a tv tray on those slidy moving disks you can get can help. Push it with pone hand as you go.

    Stairs take some getting used to with them.. go slow

    Godo luck on your journey.. soon you will be runnign on them.. give it a chance 🙂

  • I totally understand this – I hate having to use a cane, but it helps. I did however, decide that I needed the right cane, and found after much trial and error that for my (tiny) hands, and the way that I use it, a walking stick with a round knob top was best. So now I have several – all with titanium or carbon fiber shafts (they make great weapons in an emergency too) and vintage doorknobs in silver, cobalt glass, etc.

    I figure if I needed assistance walking, at least it would be something I could visually appreciate. And I too use a handicap tag, although I don’t drive anymore due to memory loss – it makes it possible for my DDs to park nearer to our location, which decreases the amount of walking I have to do, and thus make the pain and ultimate spoon cost less.

    And I really want to build a modified sedgeway type device for long distances and such. Because my balance is often unstable, a sedgeway itself would be a bad idea. But sitting in a scooter or wheelchair hurts worse than walking after an hour or so. So I want a platform with 3 or 4 steerable wheels, a joystick type controller, and a back railing to lean on. I just need the money to buy the parts and a day or two at my friend’s garage to make it happen.

  • Ffawd

    It was hard for me to go on any assistive device as well. Aside from my age at the time (24/5), there was another major reason. People say that there’s always someone worse off than you are. Who on Earth really wants to be used as the example of worse off for someone else? I didn’t want people to look at me and feel better about themselves just because they didn’t need a cane, etc.

    I now have a cane, a four wheeled walker with a seat, and a manual wheelchair that my husband pushes at times. Other times in the wheelchair, we leave the legs off and I use it in “hemi” mode by walking myself. My husband finds it amusing how fast I can move around like that, and how much energy I have at the end of the day.

    Sorry for the original post. Gotta love glitchy, twitchy cellphones!

  • Ffawd

    It was hard for me to go on any assistive device as well. Aside from my age at the time (24/5), there was another major reason. People say that there’s always someone worse off than you are. Who on Earth really wants to be used as the example of worse off for someone else? I didn’t want people to look at me and feel better about themselves just because they didn’t need a cane, etc.

    I now have a cane, a four wheeled walker with a seat, a ma

  • Good post.

    My doctor asked me about four years ago if I wanted a disabled tag, and I resisted because I’m NOT handicapped!! Well, like you I recently gave in and during the snowy weather here in Chicago, I really appreciated that tag. I rarely drive, but when I go to Walgreen’s or somewhere, I can park and not have to limp too far to get inside.

    mo

  • Nancy Shell

    Alison if you can’t milk a cow milk a goat. Have the doctor write you a script for the cane. Only use it when visiting her office then get her to write a script for the parking placard. This is the most ridiculous thing I ever heard.

  • Janet

    I’m sorry you are so young and having to get the crutches/disabled parking placard but it is good they are available for you to use. I, too, have fibromyalgia and am always having to use my cane wishing I had those crutches you have. So many people just think Fibromyalgia isn’t really a big deal. Oh how I ache! Thank you for writing how it is.

  • Linnea

    I’m happy you posted this. It’s always nice to know that I’m not alone when this condition has left me feeling isolated and like no one understands. I have Ehler-Danlos syndrome type 3, the hyper mobility type. Which affects every part of my life and health in some way but by far the biggest problem is my pain and fatigue. I have widespread joint and bone pain which is constant, severe and soetimes dibilitating. I recently lost my job because of absences due to this condition. I had many people suggest I look into going on disability. I know it’s a good idea and figure that I will need to in the future but I don’t know if I can come to terms with it only being 28 years old. Being inmy 20s and feeling like I’m elderly sucks. I’m really having a hard time dealing with a diagnosis that has no treatment or cure. I have also struggled with getting a cane and my pride so I get where you’re coming from on that. Readimg stories like yours helps. Thank you so much for sharing your story.

  • Just a thought, I always thought the forearm crutches would be a blessing but I was told by an orthopedist that since I has also blown both shoulders over the years, crutches of any form were not possible for me. A warning about advising jerks in big vehicles about parking in a handicap spot without documentation showing: I did just that on the coldest day of the year with a blizzard coming and the guy (big) opened his door (big) rapidly and just about knocked me into following week. Yes, I filed charges, yes, he is facing charges but I would have preferred to not re-visit the “gee, I want a divorce from the left side of my body but we can’t decide on who gets the inner child” misery that may continue for months. Nothing broken, did feel stupid explaining it to the police, my attorney and the e-room personnel, don’t think I will ever do it again.

  • vbc2000

    I too decided it was time for some “assisted magic” at Disney World this past Fall. It was the first time I admitted I needed it and it was very hard to actually go ahead and rent a scooter. If I hadn’t though, I wouldn’t have been able to enjoy my vacation at all. I walked some days but really did need the help other days. I found that once I accepted it, it was a no-brainer. It helped me come to terms a little more with my limitations and opened my heart to view others using the scooters with even more compassion that I already had for them.

  • Ashley Morgan

    Alison,

    There is a large group of Rheumatologists at Arthritis Associates. Their contact # is 210-477-2625. I see Dr Mosbacker, but I’ve heard excellent things about all of the doctors at the practice.

    Since you’re in San Antonio – coffee sometime? Ping me on gmail chat, you should have an invite from me. 🙂

  • Alison

    Hi Ashley! May I ask who your rheumatologist in San Antonio is? (You can email me at [email protected] if you would prefer.) I live in SA too, and I see a chronic pain specialist who is mostly great, but she refuses to even consider approving me for a disabled parking permit — not because I don’t need it, but because her personal policy is that she will only approve patients who are over age 65 or require assistive devices to walk. My disability counselor at school even personally contacted her and asked her to approve a temporary permit for one semester so that I wouldn’t have to walk half a mile to get to class (which was so exhausting and painful that I couldn’t even pay attention once I got there — if my professors hadn’t been aware of the situation and made accommodations for me to complete class work at home, I probably would’ve failed) and she still said no.

    It’s so upsetting, especially because — as you mentioned — most places in San Antonio have more disabled parking spaces than are ever used at once. I would only use it when there are excess spaces available and when I absolutely need it, but my doctor just doesn’t want to give out permits to young people without visible disabilities. (She actually said that she would give a 66 year old patient a permit just for asking, no matter how much pain/fatigue/difficulty walking they had. So if I were 40 years older, I would automatically qualify under her rules. Or if I used a cane, crutches, or a wheelchair, I’d qualify — but I’ve tried all of those, and they cause me more pain than they take away because I’m so sensitive to pressure on my hands, arms, shoulders, rear end, etc. They do reduce the fatigue, but it’s just not worth the extra pain for me. (Plus, being in my twenties I too have the issue of pride and emotional resistance, which I’m sure affects my feelings about assistive devices, even subconsciously. It took me a long time to work up the courage just to bring lumbar & seat cushions to school/work with me, and I still feel self-conscious about them.)

    Anyway, sorry for such a long rant. Long story short: I’d like to find a doctor who will at least look at my circumstances and CONSIDER approving me for a disabled permit, but I can’t afford to go ‘doctor shopping’ until I find one (as I can’t get health insurance privately or afford the premiums of the high risk pools). I don’t have a primary care doctor to ask, either. In case it matters, I have had fibro and degenerative discs (among other conditions my doctor suspects but I can’t afford to test for, like Lyme disease and Ehler-Danlos) for almost ten years now. I work part-time as a babysitter and am trying to work my way up to being able to sustain a full-time job somewhere that offers health insurance. Please let me know if you can help me out with a doctor recommendation (even if the permit thing doesn’t work out, maybe they can come up with treatment options my doctor hasn’t considered). Thank you so much! I was so excited to see an article written by someone else in San Antonio with fibro. It makes me feel a little less alone, although I’m sorry you have to suffer with these conditions. Glad to hear those crutches have been working out for you… maybe I’ll give them a try some day!

  • Carol

    Over 20 years ago I bought my first stick. I thought I didn’t want one from the NHS so I went into London to a certain man’s store and got measured, picked out my stick, a basic black, and it was cut to my height. I didn’t have to use it every day until the past 10 years. I now have a folding one and a lovely red rose one that I bought when I was in the states. I hate using it. When it rains I have to make a decision, stick or umbrella, stick wins everytime.
    I did manage to get a Blue Badge, a card for disabled parking. It can be used with any car.
    With our government squeezing the people they want to raise the price of a Blue Badge from £2.50 to £10. On the back side of the permit we have a photo because so many people use other people’s badges. We get 2 cardboard pieces, one, the permit to part in disabled parking spots and the other is a clock indicator because we are only allowed to park for 3 hours.
    Sadly, I now have arthritis in my shoulders and using the stick hurts.
    Did you read that Victoria Beckham (Posh Spice) allowed her driver to park in front of a Toys R Us in a disabled bay? Oh, I didn’t know said the driver. Oh please there are signs every where for Blue Badges. It should be interesting to see if he is charged, probably not because the rich get away with everything.

  • Sandi P

    I love the freedom the wheel chair and canes give me! I fought using them for years, thinking they were a sign of weakness and “giving in”. I can walk, but the wheel chair and canes relieve the pain so much I can fall asleep at night without crying myself to sleep from the pain. I am also very overweight, and have had many people tell me I would feel so much better if I could lose the weight. Well, I have news for them. I used to be so skinny I had to take suppliments to maintain any weight. It wasn’t until the RA and diabetes set in that I put on the weight. I used to feel that I needed the extra exersize to counter the weight gain, but I’ve found since I use the canes and chair and avoid ALL steps, I’ve actually started to lose weight! I no longer let people lay an additional guilt trip on me because of my weight.

  • Great article! I , too, suffer from the blues of assisted living. I hate using my cane. I hate going in public like that and being seen as disabled. You think I’d have come to terms with it since I’ve been sick for 13 years. I guess pride is a difficult things to break. I will work more on that after reading your article. Thank you.

  • Finny

    I have undiagnosed chronic pain issues. For dealing with them, I sometimes use a cane.

    I also am visually impaired, though not legally blind. Depth perception is pretty much gone, and night is the worse, as I have pretty much no night vision (the legally blind husband has more night vision than I do!). So, in October last year, I got a white mobility cane, to use at night, when the weather is bad, when travelling. With the cane, I do not have to watch my feet all the time to make sure I am not going to stumble or fall, so I can actually watch where I’m going and keep my eyes open for landmarks.

    The white cane is wonderful–while I am still scared to do so, I can go places on my own at night, now. But, as I do have a fair amount of vision, and because when I was little any vision was considered enough to not need assistance beyond glasses, I struggle with the fact that yes, I do need the cane, and no, I am not an impostor I am not–even the husband says I am not–but it sure feels like it sometimes.

    Still, my white cane is one of the best things that has ever happened to me. It is truly an assistive device that I am glad to have; I have named it “Stickie”.

  • Crystal

    Michelle try to talk to a disability attorney before you apply. I did and they helped me get my disability at 26.

    I have an unconventional assistance device that has helped me many times. A ziplock bag, usually gallon but quart works too. I never know when my head is going to explode but with a bag we can stop at a gas station and get ice for an instant icepack. Usually I’m not charged and the one time I was it was a quarter. Many times it has helped me on long days away from home.

  • Leanne

    Years ago, when I sustained my first injury, it was suggested that I get a handicap placecard. Evidentually my mind wasn’t ready to be labled handicapped as the first time I sent in the paperwork, I forgot to sign and date it. Second time I sent it in the paperwork with the signature, the check that had been enclosed with the first mailing, wasn’t included. Yep, found it on the desk after they notified me of my mistake.
    At this point, I had to sit back, laugh, and look at what was going on. My conclusion: I wasn’t ready to be “handicapped”.

    So I waited a few months until it really sunk in… I could no longer do all of the things I used to be able to do. This included parking at the back of the parking lot and using the extra distance for a little exercise. There were times that I’d get in a store and thought I’d never be able to walk out on my own. I sent in the form with my signature and the check. In return I received my Handicap Placard…

    …which, by the way has been shortened to ‘kraper’ for those who know me!!

    Thank you for sharing and allowing us to share in a place that feels safe and non-judgemental.

  • Dottie Balin

    Ashley, great article. I have Lupus and MS, plus many other secondary diagnoses. I use a four pronged cane and I also have a Disabled Parking tag. Like you I do not use it as much either. I also feel that many other people are worse off than me. But there are days that I have park in the Disabled area mostly because of pain etc. My balance is off with my MS so I cling to that cane. I look at it this way, if it helps me then I don’t care what anyone says. I also have many other assisted devices in my home that help me not to fall. (Which I do sometimes due to a dropped foot from MS). Thank you for sharing this story with us “spoonies” and the best to you. 🙂

  • When I was faced with spinal surgery (major stuff here…my x rays look like I’m Frankenstein!) at the age of 24, I refused to “give in” and get a cane, walker (well, I had to use one for a few weeks while learning to walk again, but I refused to go anywhere where someone may see me with it), or wheelchair because of my pride. I didn’t want people looking at me weirdly, feeling pity for my situation, or dealing with those people that actually have the nerve to come up to you and say “what is wrong with you?” yeah, they do exist.

    Well, I was in an accident a few years later that put me in the position to be forced to leave my job and go on disability “indefinitely”. This was right after I got married. I was 26 and felt defeated. I would never be the same. I had to get a parking pass, I had to walk with a cane, I had to have a second, even more serious spinal surgery. That surgery was last March, two years after the accident. But I learned a lot from that accident.

    I dont care about the stares (if I get one, I always do something silly like sticking my tongue out or waving like a fool. It makes them generally turn beat red and embarrassed). I love when people ask me what is wrong now, I get to go off on a rant about ‘what is wrong with you?’ and the parking pass has been a blessing. I use it as a chance to educate the general public that you don’t have to see a disability to have one! I had the guts to go up to a guy illegally parked in am handicapped spot with his hummer, tap on his window, to which he rolled it down. Then I showed him my parking pass and said “just try to remember that you can’t always see the disability, and some of us need this spot!” boy did he feel bad. But it’s not about making people feel bad, it’s about making people aware about the diversity of disabilities.

    And why be so clinical with our DME? (durable medical equipment!) I hand painted my cane with phrases of empowerment and awareness ribbons. People ask me about it all the time and compliment about how beautiful it is. I did the same with my garage sale wheelchair. No, I don’t have to use them all the time, but I’m glad there is an option! Yes, I’m 29 and I have a cane. So what? I may be broken inside and out, but I’m much stronger than most healthy people mentally! There is nothing to ba ashamed of for needing a little assistance!

    Spoonies, embrace your walkers, dance in your wheelchairs, and throw your canes in the AYER! (with pride, of course!) all while in a handicapped parking place. 🙂

    Miranda Stein from NY

  • We were recently in Disney World. I have fibromyalgia and knew there was no way I could walk all the parks. I rented a scooter from a company in Orlando and it folded up so it went into the car we rented very easily (fortunately hubby was able to do that.) It saved my bacon. What I didn’t like was how invisible I was and constantly having to ask people to get the heck out of the way. It was like they couldn’t see anything unless it was at eye level! Going through the crowds caused me panic and anxiety.

    I also have a disabled parking placard.

    Back here at home, I get around under my own steam, because I do not know what mobility device I could use if I was going out on my own….using a manual wheelchair would aggravate neck/shoulders, using a scooter would be too heavy for me to lift, a walker could put me in an awkward stooped posture, causing more pain…so I’m a bit puzzled.

  • nancyj

    I love my cane! Got a beuatiful purple flowered folding cane before my hip replacement and although I hate having to use it, it is a conversation piece! Being able to fold it means I can take it “just in case” I need it. It has been a godsend because I’ve had multiple foot surgeries, back surgeries and two broken ankles. I have lupus, but also have arthritis and my doc encouraged me to get the handicap pass which I try not to use, but when I need it-it’s there. I had a super bad flare which lasted almost a year, but my doc has me on Cell Cept which has kept the flares much more manageable. Good luck!

  • Fiona

    I love my crutches ! keep me stable as I struggle to walk in a straight line , and i got my crutchs fitted with special grips which are much more comfy to grip and i got them in black which go with everything ! curbs and steps are just down right dangerous with out my helpers! been using them since I was 18, help cause less pain and falls and loss of spoons go for it ! you might learn to love them for the help they give.

  • Michelle

    I had to get a cane when I hurt my arch several years ago. That first step in the morning hurt so bad I almost went flying into the closet doors several times! Since then, I have kept my cane around, and I am so very glad I did! Osteoartritis in the facet joints in my back has made mobility difficult sometimes. I also use my cane religiously when I travel. Dragging a carryon bag around disrupts the natural posture, which causes pain. Using the cane puts me straight again and makes travelling less painful. It also helps me when I’m stiff from sitting in a teeny weeny airplane seat for two hours without being able to move. I’m also less afraid of walking down a jetway. I have also been clumsy all of my life, and sometimes those jetways are very steep. Added bonus, I get to board the plane first without impatient people breathing down my neck, and when walking through an airport, people make a path!

    I got my disabled parking swinger when I got the arthritis diagnosed. Where I was working at the time wanted me to park two blocks away from the building, up a hill, in an unpaved lot, in the winter. There was no way my back and hip were going to allow that! Since then I use it only when I really need it. Just because I have it, doesn’t mean I have to use it all the time. Our local Walmart needs to double their disabled spots, so many times there isn’t one open, anyway.

    Speaking of Walmart…their electric carts have made shopping trips almost a breeze! I get through all of the shopping, and I’m not too tired to unload the car! (I know that putting the shampoo and conditioner at one end of the store and the food at the other is designed to make me shop in every section in between, but for a Spoonie, it’s downright cruel.) Although the seats in those carts aren’t always very comfortable, it’s still better than pushing a heavy cart for the mile walk around the store. I get the job done, use less spoons, and get to enjoy my evening instead of spending it recovering.

    What I’m having trouble with now is the idea that I’m eligible for SSD. I have proven to myself that I can’t keep a work schedule without my health going downhill to the point where I can’t work at all, but now I have to prove it to the government. I’m 36 years old. This sucks.

  • Sophie

    I was still 24 when I first used a cane. Due to balance trouble I was literally having to hold on to walls/fences/anything going and it became clear I needed *something* or I was going to fall into passing traffic. So I got a pretty purple cane and literally used it to walk out of the shop. As you’ve noted, it helps save so many spoons!

    A friend gave me a pair of crutches a while back, and while more tiring to use they help keep me safe from falling on bad days when I really have to be somewhere and my balance or my leg weakness is particularly bad. They were easier to adjust to on an emotional level, which I guess was because they’re similar to a cane in style and I didn’t feel like I was “giving in” any further than I already had.

    Yesterday, for the sake of being able to leave the house for longer periods and go places like shopping centres/malls where everyone shares air and space (these places seem to suck strength out of me before I even do anything) I had a wheelchair delivered. It’s hit me harder than I’ve really admitted to anyone around me. 27 and needing a wheelchair to go further than the doctor’s, or a friend’s couch. It will assist me, yes. There will be days it utterly relieves me. Still. 27. Sigh.

  • Renee

    Don’t feel bad about using a cane. My daughter started using a cane at 10 years old. It was definitely a hard thing to deal with at that age. The kids at school would make fun of her calling her “cripple” and many other things. They even kicked her cane out from under her weight and would cause her to fall. Just remember there is always someone else out there that has it worse than you and keep your head up and be proud of who you are and you will make it through anything!!!

  • San-Dee

    My husband had a stroke less than a year ago, then due to peripheral artery disease had to have a partial foot amputation. The cane he uses has been invaluable in allowing him to continue life as “normally” as possible. We have a parking placard and use it when he is in the car-he no longer drives-the point being the driver of the vehicle doesn’t have to be the disabled person. Don’t be afraid to use the placard-the strength you save by parking close is strength within the store/restaurant/mall/etc.

    Remember that every time you use a cane or crutches or any other adaptive device, you have an opportunity to educate those unfamiliar with limited ability, my favored expression rather than “disability”. Education is one of the strongest tools to help others understand that what they take for granted can cost you many spoons on a “bad” day.

  • Melanie

    I have fibromyalgia and am 29. I also have a handicapped parking placard and use a cane during flares, or if I will be doing something more exertive and out of my “routine.” I know exactly what you mean about feeling guilty over whether or not someone else might need the parking space more. But I have become good at recognizing when I really need it and confident enough to use it, (it has been life-changing) and also knowing when I can and should walk a bit farther.

    I got the cane idea when my husband and I were looking for our first house. The first weekend we saw 6 houses – up to the attic, down to the basement in each – and you can imagine the state I was in by the end of that day. But we were under a time crunch and had to do it again and again weekend after weekend (which is usually my rest time). So, I got a cheap drug store cane just to test out the idea. It was AMAZING! So, after that, I searched and searched the Internet for the brightest, pinkest cane I could possibly find! And now rather than being the 20-something (can you still call yourself that when you are pushing 30?) that people feel sorry for, people light up when they see it. You can tell it sparks their curiousity, but not necessarily their sympathy, because clearly a girl carrying a bright pink cane isn’t ashamed of her disability. I am pretty sure I have even been hit on more than I had been in years!

    The placard and cane are two things that I definitely first went into with low confidence and self esteem. But, the way that they have “assisted!” me, and the lessons I have learned since, have helped me come so far with regard to first accepting my illness, and also doing what I need to do to help myself. And being proud of myself throughout. I have also learned more about the goodness in people. So I applaud all of you for learning the same things!

  • Stacey

    Having Ehlers-Danlos, I’ve always been a bit clumsy (which we didn’t realize was from the EDS until less than a year ago, always just thought I was clumsy). When I started taking Klonopin in the evenings to help me sleep and decrease my pain at night several months ago, I became even more clumsy and started tripping/bumping into things/having falls. As much as I didn’t want to admit it, I knew I needed some help. I broke down and bought a cane for use at night. After I take my evening meds, I keep my cane by my side and I’ve had less bumps and bruises since then.
    I even did break down and use it in the airport once (first time I had ever used it in public during the daytime when I wasn’t medicated) because the extended time sitting on the plane was hard on my hips and rushing through the airport wasn’t much better. I was glad I had it; it was better than limping all day.
    While I don’t like the idea of being a 23 year old on a cane, I’ll take it if it helps. But I don’t want it to be a regular thing just yet. I’m young, there’s time for that much much later.

  • liz

    this is an honest and helpful piece of writing.

    our self image wants to look “normal” our reality means we need to help our selves and give off the right messages to get us helped.

  • Kaitey

    Due to a sprained ankle, I learned that crutches are not something I can use. My Fibro so limits my hand strength and balance that I just can’t do it. I swallowed by pride and purchased a three-wheeled walker (they are not terribly expensive and I didn’t need a prescription) and found it MUCH more convenient to use than the cane I have now switched to for short distances.

    Pros: The walker has a built-in pouch, so I can carry things–much harder to do with the cane. I can also stand and use both hands without worrying that it will fall over.

    Cons: The model I chose is kind of bulky for short trips and/or tight spaces or uneven surfaces. Getting it in and out of the car can be a pain. It’s also a bit embarrassing to use for me–I’m only 34, and it tends to draw stares. Still, it’s better than losing my balance and crashing into displays at the store.

  • Tonia

    I know how hard it is to come to terms with accepting the fact that we need assistive devices. Just this week I purchased a raised toilet seat (thank you Jesus!) and a stool for the shower. The toilet seat was such a fantastic purchase, I can finally stop dreading have to go to the bathroom. Now, I can comfortably sit & stand up from the toilet without a grunting, straining, and tons of praying. (I always feared being unable to lift myself & having my son assist me or a neighbor…how embarrassing would that be?).

    I also realize that I need a cane. Although I know that it would be helpful I worried a great deal about the pressure on my hands & wrists, since these are in constant pain. I have seen the crutches you described and will take another look at them based on your comments.

    Thanks for this article. Gentle-hugs to all.

  • Jen

    I have arthritis in my back and neck and have had 2 knee surgeries (also wondering about arthritis there, being at higher risk with the surgeries and scar tissue), as well as ankle surgery where there was some scar tissue removed. My fibro makes the pain in these areas especially excruciating. I sometimes think the forearm crutches could be useful. I also have pain in my hands – I believe some arthritis and I do have carpal tunnel. My fine motor skills are deteriorating and I have twitching, I suspect due to the massive amounts of medication I take. I am 39 and admit that part of it is a pride thing (as much as I hate to say that). I also fear that I’ll lose some mobility if I begin to rely on crutches. There is the issue of asking my doctor for them, also.

    I do have a parking placard. I carry it in my purse so regardless of who’s car I’m in, it can be used. I have found it to be very helpful. When I go to the doctor I find myself being terribly anxious so my body tenses up… we all know how that makes pain so much worse. Having the ability to park nearer the door is a lifesaver. Additionally I am bipolar and have suffered from agoraphobia for the past 3 yrs. While I’m working really hard to work through the agoraphobia, my personal space is larger than most people’s. Having the extra space next to the parking spot is helpful. I would never have asked for it for that reason alone, but I admit it is a bonus.

  • At least you have a doctor you can see and see her that often…i was diagnosed with Fibromyalgia by two doctors who do not care nor have helped me….i am in constant pain…You are beyond being BLESSED

  • Michele

    Joy, you don’t have to be driving to use the placard. I use mine most of the times on days I can’t drive, so my daughter or husband can park close and help me out of the car!

    I broke down and started using a cane a few years ago when I realized that when I fly somewhere, I cannot walk unassisted afterwards. Don’t use it all the time, but I’m sure glad it is there when I need it.

  • Lisa J

    My illness was moderately under control (as long as I lived around it), but issues with one of the treatments no longer working as well and causing issues has triggered a relapse into the worst of the symptoms. Now I have days where walking ten minutes is almost impossible. I can’t STAND to do the Wal-mart cart thing. I understand, and relate. Hubby has been pushing me to ask for a handicapped placard for almost a year!

    (((hugs))) You inspire me, and your candor encourages so many of us. Keep on keepin’ on.

  • Joy

    DISABLED PARKING!! I WANT THAT!!
    Trouble is… I’ve had such extremely bad vertigo I can’t trust myself to DRIVE! I’ve had a signed, completed ‘HANDICAPPED PARKING APPLICATION” sitting on my desk for 6 months… but I’m too disabled to DRIVE TO THE TAG OFFICE to get my placard! I can wobble to the car just fine thanks… But DRIVE? Look OUT world! (I’ve got double vision too.)

    Ah Murphy’s Law strikes again…

    And about that CANE… I LOVE my cane! My cane is hand-made from fine hardwoods and gets compliments wherever I go. Purchased at the Yellow Daisy Festival (a large crafts fair in Stone Mountain, Ga.) after I had FOOT SURGERY, little did I know I’d come to rely on “her” to keep me from wobbling over from MS-VERTIGO, wobbly gait, and just plain EXHAUSTION! “She” was made by a company called LEAN ON ME out of Portland, Maine, in 2006. The owner doesn’t know it yet but I’ll be back at Stone Mountain in September to buy a second beautiful cane from him, because I DESERVE it. It’s a work of ART and so am I!

    Stay brave as you are Ashley! I was diagnosed 30 YEARS AGO! I find there’s more to learn –and buy, and read, and create!– every day to help us live the best lives we possibly can.
    Take good care of You!
    JSJ