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!

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.

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.

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.

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

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.

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.

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.

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!

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.

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”.

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.

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

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!

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.

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!!!

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!

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.

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.

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

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.