When Should People Living with Rheumatoid Disease Use a Wheelchair?
Or give in to using a cane? Or pain medication? Or a handicapped tag?
There was an interesting discussion about wheelchairs and canes on my Facebook post yesterday. At the same time, there were a few other discussions going on about pain medicines. There is such a wide range of needs. But there are some things in common too:
- Pain. Some constant, some intermittent.
- Courage. Pushing oneself farther than others know.
- Being able to decide when to take action to get help.
It seemed like one obstacle many have is a concern about being judged. Here is one area where awareness will make a difference. After all, what is so controversial about choosing a disability aid or pain medicine? What advantage is there to letting people suffer needlessly?
For anyone who wonders about people with rheum disease, beware of silliness!
Even with regard to wheelchairs, beware of assuming…
- Assuming that one’s needs, abilities, resources, or difficulties are the same as others’.
- Assuming that what works for one will work for others.
- Assuming anything about a person’s disease based solely on appearances.
We need support & to be allowed to decide. On wheelchairs, pain meds, etc.
Whenever I talk about difficulty walking, someone criticizes me for not using a cane. I know I’ll never use a cane because my shoulders were the first to go. Well they fight for that status with my feet. So – no thank you – no cane for me. Don’t try to talk me into it. I will choose to use a wheelchair instead. Fortunately, it’s a rare thing so far, because I hate it. I hate sitting in a wheelchair in an airport waiting for people to move out of the way or hand me what I need. RA has made me more patient, but obviously not as patient as I’d like. How about some perspective though? Learning to deal with the patience in the wheelchair is just like tolerating side effects: I don’t like side effects, but I dislike the pain more. I don’t like the wheelchair either, but I dislike sitting on the floor unable to walk more. At least I have a choice right now. And I know the choice is mine.
Note: If you have a blog, check out the pain scale carnival. I’m still working on it so let me know if you write a post or draw a picture. It does not have to be an RA blog!
Recommended reading
- Is That Your Final Answer? …or Replying to Misconceptions
- Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis
- FDA Limits Acetaminophen in Prescription Pain Medicine
Used one under duress when I severely couldn’t walk anymore, even in the apt. Still have one even though I can walk a wee bit.
Wow! What a subject… Last year I got an handicapped tag at my ergotherapist’s suggestion. While I really appreciate the much shorter walk distances to everything, the emotional process needed to get there (e.g. Get the tag!) can be overwhelming… There is no going back. Unless a miracle drug shows up, I will need my tag for as long as I drive or ride in a car. And while i am 100% for getting all the help i can, in the kitchen, etc, in whatever form, my heart sinks at the very obvious: with each year going through, i am more and more ‘handicapped’. And that realization in itself hurts. Unfortunately, pain meds cant do for that:)
To both continue to work full time yet get to md appointments, I had multiple steps to park in the garage for the days I have appointments only. The rest of the time I park in a lot and must wait for a shuttle, which sometimes pulls out as I am struggling towards it. I had to go to employee health, then to my dr to get the form for the handicap tag, then to the city to get a tag, then back to the hospital police for a temporary tag that I must renew every 6 months. I’m supposed to park far away, but I don’t, because it’s too painful. I use my cane then, but my nurse manager doesn’t want me to use it because I might fall.
OMG! Rose! Your “nurse manager” doesn’t want you to use your cane BECAUSE YOU MIGHT FALL??? What kind of nurse is s/he??? Use your cane, and if your nurse manager threatens you in any way, start going up the chain of command. A cane, properly used, will not increase your fall risk – it will help PREVENT falls. I know how hard it is to be assertive at times, but now is the time. Is your RN mgr doesn’t know about RA, then present him/her with some medical articles about the way RA affects patients in terms of pain, mobility/disability, and fatigue. Kelly has posted links to many of this kind of article. God bless you! I am with you, and sending you prayers and HUGS!
I had to ‘give in’ and buy a cane about 3-4 yrs ago. My hips have secondary OA, thanks RAD!! And as they got worse & worse I was finding it harder to get about. I don’t use it indoors at home but it always goes with me when I leave the house. Of course it hurts my hand and wrist but the pain in my hips is worse so it’s a trade off.
I also have a ‘blue badge’ for parking (I can’t drive), but its a Godsend when I go out with hubby or the kids or Dad or my bestie to be able to park closer to where I need to go. As for the dreaded wheelchair, I’ve relented a few times on very long day trips or on holiday we’ll hire one and it sits in the boot until I’m in so much pain I have to use it. That is still a huge bone of contention as I feel totally useless when in it, my shoulders mean I can’t move myself so I have to wait to be pushed or moved anywhere and I feel like I’m in everyone’s way, but when I simply can’t move another step what choice do I have.
As for pain meds I’ve been on di-hydrocodeine for about 4 years now, maybe longer and I take them every day, usually 3 doses a day. If I can manage on 2 I will but it doesn’t happen often. I hate being relient on all of these things but it does give me a better quality of life and allows me to still be able to do the things I love with friends and family. When it comes down to it it is totally a personal choice of when & if to use these things.
Gilly (currently recovering from 2 days worth of shopping).
mmmm quite a subject. I can’t speak for everyone (obviously). I have a wheelchair – issued via my GP. I hardly ever use it though. A few reasons, firstly as I want to be mobile for as long as possible.
The first time I used it, a lady grabbed my head and slowly asked me ‘if I was alright’, was I enjoying my holiday – you get the idea! For possibly the first time in my life I couldn’t speak – partner shot off as he thought I would throw a wobbly!
I will use it when I have no choice,and not using it would make life difficult for others – airports etc.
I’m in the UK and we have a lot of motorised buggies here. I think maybe they should be issued with medical certificates only – I think people use them as they can’t be bothered to walk (what a life), some people drive them very dangerously at others too.
I’m looking forward to hearing some more comments; I just never ‘gelled’ with my wheelchair – but that’s a personal thing, its me.
For me the defining question I ask myself is this: Will using the wheelchair grant me the ability to do something I otherwise couldn’t do? Or will it be more of a hindrance than a help? And I’ve used one enough to know the answer to those questions. If using the chair (or the cane or the walker) means greater freedom and more enjoyment for me than I would have without it…Then USE it!
thank you Cynthia for your comment, it was suggested that it was time I considered using a motorized wheelchair which I balked at, even though I can hardly walk from no hip joint in the right hip. You are right if it gives me freedom to go and do things that i would enjoy, then yes, I need to stop being stubborn and consent to it. I use the cane when I can until the wrists become too inflamed from the cane. Lovely RA. So I am trying my best to accept my new normal of living with RA, it does constantly change. God Bless
When should one use a wheelchair? That’s easy. When one feels the need. Same is true about pain meds… I am still amazed that people are so judgmental. Especially other people with RA or similar condition. Seriously, people should either be supportive or butt the heck out… Sorry, I was brought up to be more polite if not nicer then to be so judgmental and rude. We all have to deal with different circumstances. Not only symptoms but also responsibilities. For the record, I take pain meds and I have a handicap tag. I refuse to feel guilty or apologetic about it. I am a father of three that works 60+ hour-weeks. I’m very involved in all three of my kids lives. I drive my kids carpool, I coach my kids’ sports and chaperone events in elementary, middle and high school. Pain meds allow me to be functional. I don’t have the luxury of stopping work or the willingness to stop being active in my kids’ lives. So I do what I have to, to ensure that I am able to do it. For someone else looking in from the outside to tell me I shouldn’t do something or should do it differently is silly at best. Someone else will choose to do things differently to deal with their circumstances and responsibilities. I will be as supportive as I can. What works for me may not work for you, but that doesn’t make either one of us wrong. Make sense?
YES!
Do you take pain meds and drive your kids around? If you do don’t believe nothing can happen because you think you’re accustomed to or tolerant to the narcotic dose. If you’re in an accident you will be charged with DUI. This is from personal experience. Clearance time is 48 hours…I don’t drive because I choose to control my pain and it not control me.
Kelly, thanks for this post. Though I’m not an RA patient, I’ve dealt with some of these same issues. After my stroke at age 28, I was sent home with a walker. There is nothing cool about a walker, but given that I couldn’t walk without it (I would fall down or run into walls), I had no choice but to use it. After a few months, I was able to use just a walking stick to steady myself, or when in a store, I would use a shopping cart because it was less obvious that I needed the assistance.
After my gastric rupture in April, I could walk, but I would easily become exhausted. We had a family trip planned in May, and I went. The trip included a visit to the aquarium in Chicago. To conserve energy, we rented a wheelchair. It was an extremely eye-opening experience. Some people were rude and wouldn’t get out of the way. I got bumped into a lot. I got stood in front of a lot. Others just seemed freaked out by me. I was fortunate. At the end of the visit, I could get up and walk out, but so many others are not so lucky. In many high school health classes, students are given “babies” (a sack of flour with an egg taped to it) for a week. How much difference could we make in the perception of people with disabilities if we gave those students the experience of a week in a wheelchair?
What a great idea you have!
Yes, like I said, I too was surprised at how frustrating it was and how unhelpful people were while I was in the chair – it has been a hassle sometimes and a blessing at others. And then a TSA agent still expected me to get up and lift every heavy thing and push them one by one through the belt in Chicago. #Fail.
This is an EXCELLENT idea! I’ve read a similar idea, not aimed at high school students but medical students. I do think it’s a good idea for schools, and not just high schools, to teach children how to deal with people who are handicapped. I’m fortunate that my son has known me no other was besides handicapped so I don’t have to deal with him being upset too often. And in his grade at school is a boy in a wheelchair, so most of his school friends are good at accepting people in wheelchairs.
I was reading a devotion in Dec 2010 and it has stuck with me this whole time. When I read it, I was in a nursing home for rehab. And it addressed how medical students saw the difficulties of living in a nursing home. Here’s part of the story: “A medical school program in New York gives students who are training for geriatric medicine a unique opportunity. They experience life as nursing home residents for 10 days. They learn some of the struggles of maneuvering a wheelchair and being raised out of bed with a lift, as well as reaching the shower bar from a seated position. One student learned how little things counted for a lot—like lowering nameplates on doors so that patients can find their rooms more easily, or putting the TV remote in a reachable location.” http://odb.org/2010/12/07/little-things-3/
If more medical schools did this, more doctors would understand not only how people in nursing homes feel, but how handicapped people feel at times. It wouldn’t address everything handicapped people go through, but they’d have more awareness than they do now!
I agree with Martine that it’s an emotional process to accept in my mind that I am disabled. That was my main delay in getting my handicap plaquard & applying for disability. I haven’t been able to walk much for the past few months. And when I do it’s with a lot of meds & forcing myself & then usually a lot of regret, crying & pain later on. One of the hardest things to deal with recently was that my teenage daughter needed to go shopping for a dress to wear to a wedding. Clothes shopping was something we typically had fun doing together before I got sick. If I had a wheelchair I might have been able to go shopping with her. But I don’t so I missed out. Several months ago I asked for a cane from my rheumatologist but was never able to physically go and get it. Now I feel like I am past the point of a cane helping. I’m also afraid that if I use a cane it will hurt my hands & shoulders more than they already do.
I have two sticks with flat handles but they make my hands hurt to use them, got a wheelchair but cant use it as my husband has back problems, so I use a walker with a seat , it still hurts to use it but I need something to sit on now and then…people hate when you tell them you cant do what they think you can do, even my husband…Grrr
This one really has hit home. I have used a wheelchair in the airport, I have allowed others to carry things for me when they offer (which I rarely did before) But as you say like you, I currently still have a choice, SOMETIMES. The night before Thanksgiving this year my hubby called an ambulance because I could not stand on either foot, both ankles, both knees, both hands and both wrists were in major flares and I actually broke down. When I got to the ER they looked at me like I was crazy – Oh we can give you an injection of morphine, we can give you pain meds etc, but there is really nothing we can do. Okay then why in another hospital in another state they will put a patient on IV steroids until the flares are gone??? I had to be carried to the bathroom and when I got there I could not sit on the toilet because my knees would not bend. I had pain meds, I took them – I came to the hospital because that is where you SHOULD be getting HELP – This has got to be THE MOST FRUSTRATING illness EVER! Thanks for this Kelly you were spot on with this subject!
Bottom line- we can use a wheelchair, cane, walker or other mobility aid whenever we feel like it! Sometimes it’s just a wiser choice to take a ride through a park or museum rather than killing ourselves trying to walk it on our own. It’s all about what works best for us rather than what others think.
It does take time to accept using mobility aids!! I refused to use the motorized scooters for the longest time- until we went to Disneyworld and my aunt rented one for me. It was the best thing she could have done, as I enjoyed the park rather than exhausting myself and dealing with the pain later. I still hate the gaping stares when I use my walker (I’m only 43) but they won’t keep me from using it as needed.
I was one of the ones posting on Facebook about this issue, and, as a result, I’m a little hesitant to try again here. I had posted that going grocery shopping was difficult, that I hadn’t been able to bring myself to do it lately because I knew I would need a scooter, and it was emotionally difficult. I needed someone to understand and even admitted that it was hard for me to press the “Enter” button and post that comment for all to see. I was a little taken aback when, instead of understanding what emotional import it has to consider climbing on that scooter in public for the first time might be, commenters instead said that those mentioning this difficulty were hurting no one but themselves and making their families and loved ones miserable. I’m still digesting that.
I think there were many different views posted there which shows that this is something we need to discuss. And I thank you Linda for posting here as well. Someone may have been responding from their own experience and not understanding your needs where you are in the process. I’m sorry if you were hurt in the process of any public discussion. It happens to me too if that helps.
Sometimes with RA we feel damned if we do and damned if we don’t. If we use the scooter instead of going hiking, we are lazy. If we can go hiking, we may forget that many others CANNOT do the same and it seems unkind.
I’ve felt criticized both when I did and when I didn’t use a wheelchair/cane/handicapped tag. By both ignorant members of the public and other patients. This is why my plea is always that we respect the differences and give the benefit of the doubt. I hope you’ll see that’s what’s intended in the Assumptions section of this post.
Thanks, Kelly. I do trust this community more than any other to understand. That’s why I tried again. I appreciate it more than you know. Shed a few tears the last few days because I try so hard to keep a positive attitude and would do anything to avoid hurting my family or making them miserable. The thinking part of my brain says it’s silly to be caught up in whether I ride in a scooter or not at the grocery store, but there’s more than intellect involved in such things. I try so hard not to complain to my family, especially since a daughter is suspected to have RA, too, or make them miserable in any way. And now that someone has “heard,” I can smile at the “buck up” advise and do some of that bucking up!
Linda, I know exactly what you are saying. It is an emotional issue for me. I understand that logic says it is win win to use the chair/scooter/whatever. However, logic does not exist on the same plain as emotion for me. They are two completely different animals. I was diagnosed 30 years ago, and said to myself at that time, “I’m never going to let this beat me; I will NOT end up in a wheelchair! For me, that was the goad that kept me from just giving up. This last summer, I was in L.A. for my granddaughter’s college graduation. Her father, my son, told me it was time for me to consider a scooter. He in no way meant to hurt me, but I was devastated for days. We are sometimes silly creatures emotionally, but silly or not, we are trying our best not to be a burden. I think perhaps our fear of being a burden really works to our own detriment and to our loved one’s detriment as well. I have had a long while now to think and to “feel” my way thru the maze that is our brain on RD. In your time and your way, you will decide what is best for you. As for the rest of us, we will be there cheering your decision, whatever it is! I apologize for the rambling;)
I can’t see myself ever using a cane b/c my hands are so bad. I have been tempted by the scooters at the grocery store several times but have never actually used one. I’m 33 years old and I look healthy. I know people would judge me so as long as I can get away with shuffling along I do. Which is sad, but it is what it is.
I used crutches when I was younger, before the chair. They were the kind where you rest your lower arm on a horizontal thingy (because my hands couldn’t use regular crutches). They didn’t work for me – my shoulders couldn’t do it.
using a wheelchair is a very different way to interact with the world. Or rather, for the world to not interact with you. It takes a different level of assertiveness to make yourself be seen. However, it is as so many other things you get forced to interact with when you have RA: a tool. So many people see it as “giving up,” but in reality it is something that can help you conserve energy that you can then spend on your life. This is not meant to negate the fact that other people are often idiots when interacting with someone who uses a wheelchair, but when looked at in isolation of that societal idiocy, it can be a huge help.
I am new to this disease, however it is hitting me very hard and very fast and hitting all my joints. Just 2 months ago (oct. 2011) i was running around no problem living my life with good health and no major issues. Then in the beginning of November my left knee started to swell, then the right, then the base of my spine, then base of my neck, sorness has hit my ankles, wrists, elbows, jaw, and middle finger. I haven’t been well at all. I have been seeing my GP every other week, he has had me in to see a specialist already. They have done 5 separate blood tests, they are testing for everything, they have drained my knees twice, and gabe me cortizone shots in them. I see the foremost RA specialist in our area this week, and I am told he is the one who will get to the bottom of it. However if this progresses much more believe me I will need a wheel chair and I have no issue with that. It is better than not being able to move around. Interestingly my mind is fine. I have no depression over this. I am grateful that the pain is minimal at this point,(the pain is agony however if I try and bend my knees, best to keep them straight) just can’t bend my knees and I am tired and achey. They have me on meds already, hopfully they will kick in. They said they take 1 to 3 months before they work.I am looking forward to meeting the new specialist. I have hope. I have a friend who was bed ridden for 3 years and he is the one who has here up and about. She is doing good. Thanks for this blog. Thats it. m
I can see a doctor giving his opinion but I think this should be left up to each individual patient. We differ so much from the intensity of our RA, the way we react to meds and our tolerance for pain. I may walk slow and sometimes a little wobbly but I do not use a cane or wheelchair yet.
I received an email last month from a lady who still wants to ride a motorcycle but her doctor told her to sell it. He told her that no one with RA should ride one, you can not safely operate one any. Oh really? I have logged over 8000 miles over the past 2 years, most of them being off road miles (a bit more difficult than riding asphalt). This infuriated me … does he think I can not ride safely?
This is a very tough decision for all of us. I was always the type to “push through the pain”. Three years ago my family and I went to Disney World and I had not been diagnosed with RA but had been diagnoses with fibromyalgia and hyperflexability. I walked the whole day and spent the next month recovering, it was a horrible experience. This past month we went on another family trip to Disney and I was really concerned about my ability to keep up even with new meds. My wonderful husband insisted I get a scooter, made the reservation for it to be delivered to the hotel, and double checked distances from the hotel to the park and monorail for me.
The difference was amazing. I spent all day, for TWO days, at the park and did not have nearly the down time afterward. Only a couple of days of tired instead of debilitating pain and fatigue.
Now, on the side of rude people at the park, it is amazing to me how many people will jump right in front of a moving scooter and expect you to just stop for them. I wonder how many of them would do this if scooters looked more like cars?
I say do whatever makes you more comfortable with yourself and other people can just deal with their own problems, but it has taken me a long time to get here. I have also resisted canes, wheelchairs, car tags, and disability, it is very difficult to deal with the labels we put on ourselves sometimes.
I have needed to use my cane recently. I originally got it before I was diagnosed with RA, with meds, I did not need it. I have not had to use it for the last year, so having to use it again is hard. It is a wake up call that this disease does progress. So many of us look ‘normal’ on the outside, no one would know what we are going through.
For Linda, I read the comments on Facebook, big hug to you. It is a hard step and we all have to handle our disease individually. Just wanted to let you know, that I understood what you were saying!
Thanks so much. I think others did, too, probably but had a different way of expressing it, and I was in a vulnerable place just right then. Thank you so much!
I use a wheelchair when I fly because flying is painful! I also wear my wrist braces and bring my cane. When I know I’ll be shopping (say, at the mall) for any length of time, I bring my cane. I use a walking stick when I go for a walk because I probably wouldn’t make it home without it. I try to stay as active as I can, but some days are better than others. It seems like my feet and ankles are going pretty fast now, but I’m fighting it kicking and screaming every inch of the way!:)
I have to admit, it’s hard to use “devices”. I hate the look people give me. I try to hold my head high and pretend not to notice. I need to be comfortable about who and what I am and not let RA or people define me. If there are days I don’t need extra “help” then I don’t use it, but I refuse to be embarrassed on days I do need the extra “help”. I guess we all know that RA is a forever thing and like it or not, it’s what we deal with. I have to say there are days when I’m not so sanguine about it (HA!) but I sure try to live life a fully as I can. Must admit though, I’m not always successful!
I use the store scooters when i have a flare-up. it saves my mobility for better uses like walking on the beach, doing things around the house, managing steps, getting in and out and up and down with less pain and fatigue. i have canes but my shoulders & hands are often affected. i just filled out a handicapped parking application today! amazing that this forum came up at the same tme! again it is a matter of preferring to use any assists i can to save my energy for better use – no pride, no worries – i was a performer and a farmer most of my adult life – now i am glad to garden, grow things in pots and still pick up the guitar occasionally! sometimes my meds are working great and i make up for lost time then!
Why care what strangers in a store think? Do what is best for your body. I am saying this as a 34 yr old who has been in a wheelchair for 3 yrs and had to fight to walk again. While I am grateful I can walk around my home or other short distances, I WILL use my wheelchair no matter what others think IF it is what is best for my body, pain levels, and fatigue level. If someone else can’t accept that I am in a wheelchair, that’s not my problem, it’s theirs. RA and other invisible illnesses cause us to have a need for a thick skin so to speak. Let what strangers say, do, or think roll off of you. If they’re a stranger, what does it matter what they think as long as you’re the one who is comfortable.
I’m so sorry if I offended anyone by my statement that not using whatever you have to help you have less pain only hurts yourself is offensive to anyone, but I also fail to understand why anyone would not want to use an item that will lessen their pain. Is it easy to use wheelchairs, canes, walkers, forearm crutches, handicapped parking permits, pain meds, etc etc etc? NO. But, if using those items save you pain, fatigue, energy, etc etc etc, that’s why they were made available to you. No one is saying use an aid when you feel decent. But we do have a responsibility to ourselves and those we love to do what is best for our body whether we like it or not.
Think of it this way: if it were your loved one in your position, what would you tell them to do? Would you tell them to use whatever means they have available to them to help them have a better quality of life?
I am in one of my worst, most long-lasting flares ever, and am going on work disability – and I have just been thinking about these questions. I was planning to buy a cane, and just check it out, although as many have mentioned, the pain in the hands/wrists/shoulders may limit the benefit. I have also recently had days when a cane would definitely have not done it, and a walker would have been much better, I think. (I’ve so far never used either one, ever, but had a recent day when I had to roll myself around on an office chair with wheels, because I couldn’t walk because of pain.) I was also trying to decide whether to ask my rheumatologist for an application for a handicapped sticker. I think I would only use it when needed – which is not every day – but when I have bad days, they are sometimes really bad, and it would be nice to have.
When my two daughters bought me a Rollator wheelie-walker I cried for a week I was so embarrassed and upset. Then – I fell in love with “Ethel” as I called her, she saved me so much pain and distress – always somewhere to sit, always something to rest on, just heaven. I have canes/sticks, don’t use much because of pain in hands, don’t use Ethel any more because of pain in feet and back, sooo –
Welcome to “Duckie” my power-chair! That was a terrible shock when the GP said this was my next move, I felt absolutely finished, done and over. Now, 6 months on, Duckie is my new bestie. People sometimes are not really polite about my mobility, but mostly I have had nothing but kindness and genuine concern from strangers. Now that I often can’t reach things in the Supermarket, other shoppers are very glad to help, most obliging – I have taken a leaf from my Grandma’s book – she told me long ago that whatever you have, have it with grace.
Now that I have got over losing my ability to drive, therefore my ability to go anywhere, I am dependant on mobility transport, and paying for that; it has to be booked days ahead and sometimes I wait up to three hours for them. I do use a taxi-card from the govermnent, that entitles me to 1/2 fare up to $50, (AUD). So I don’t use that much for long distance! My scooter (“Gibbs”, of course…) is my back-up and I use it much less often, because it cannot do/go what Duckie can, and people are less supportive of folk in scooters in my neck of the shopping Malls – ha! That is probably because of the horrid way some of the scooter-riders here blaze their way through, too fast, too careless, seemingly irresponsible. I don’t understand why they do this, but I have seen it and am aware how badly this impacts on other mobility-device users. Over here scooters and power-chairs must be registered and without a GP’s letter you have to pay for that, the government pays for mine fortunately. I too believe that there should be some sort of check, driving test, whatever.??
My scooter can come apart and go in my daughter’s car, the chair cannot. So – sometimes I must be on Scooter, and that’s okay.
When to start using a mobility device of any kind? When you need it. You would be a very foolish person if you refused to wear glasses to help you see and instead went round knocking into things! I hold my head up and I answer questions from strangers who mostly are interested, but may be afraid of offending. I speak to all with kindness and as much grace as I can muster. From observing the impact of the few Scooter-Hoons around here, I can understand how angry and hurt the general populace feels, and from that, of my own choice, I have taken up ambassadorship for what rolls me along, whatever wheels it is on any day.
When I am in great pain and feeling bloody terrible, a child bumping into me and their mother pulling them back with embarrassment and shame, it may take a lot of patience and strength to reach out to both of them with a smile and kind words but it has always been worth it.
Good luck to you all – do what you need, take what you must, be who you are, live every moment.
Thanks for sharing, Linnie. good illustration about glasses and doing what you need.
Is anything named McGee? 🙂
Linnie, thanks for sharing.
I have seen those wheelie walkers around, but thanks to your posting about yours I looked at them online and discovered one that might help me at some point – the Rollator gutter arm walker. Instead of leaning on and using hands, the handles come up so you can rest your forearms on them and those take the leaning / weight. I’ve never seen that before.
So many times I have used a shopping cart as a walker, crossing my arms and leaning over on it as I shop. My poor kids always wanted to push the cart but I needed it for support! 🙂 The gutter arm walker might serve that purpose the next time I need something (right now I’m in a 6 mo. good period, not needing many aids).
rawarrior I just got a walker for getting around the house. My mom pushes me in a wheelchair at Walmart.
Use them when you need them. AND I know that is easier said than done for some people. It is every one’s choice, and no matter what, we should be supportive of them, what ever they decide and for what ever reason. I do use a cane every day. Left knee will have to be replace at some point, and the Doc told me the worst thing I could do was to limp like I was. How right he was, not limping so much took alot of the pressure off of my hips. I do own a wheelcare, and use it for going to the airshow, the botanical gardens, black friday shopping at the mall, and other things like that. My wonderful husband encourged me to get it, so we could go places together and spend the quality time at them like we us to. My whole family is very supportive, and be it son, neice, nephew, step daughters, grandchildern, they all want to push me in my chair so we can have fun together. Yes there are so rude people out there, I just ignore them, they are not worth my time, I need that to concentrate on my family.
Also, I still work full time, can not do the heavy lifting like I use to, my Company works with me, and has provided me with a comforable chair w/ back in stead of the bar stool. And very understanding about all my dr visits.
Good luck every one, and just remember, be you best support for yourself and take care.
No McGee yet – but I do love Timothy McGee, so who knows? ;~}
ah haha!
One of the things that upsets me the most about RA is how I suffered so terribly for years, and not once in 15 yrs of driving did any dr. ask me if a disabled parking placard would help me. I thought they were only for people in wheelchairs (yes, I was clueless). At certain points I would pull up to places, not get a close enough spot, and have to leave. It was hard on my kids, or I pushed through the pain and suffered for those extra steps at home.
Finally, I met another mom who had MS who had one, and she just said “why don’t you just ask your dr?”. A 2 minute conversation and he turned around, pulled a form out of a folder on the wall, and handed it to me. So easy, yet it was never offered.
I have to say, having the permanent blue disabled placard has changed my life for the better. I don’t always use it, but when I need it, it is there (I have the one that hangs on the rear view mirror). It was a big psychological shift to accept that I needed one, and it took about 5 yrs not to feel like everyone was looking at me when I parked in a disabled spot (I look pretty healthy and with no obvious health problems). But I’m over it.
We need all the help we can get. Using that help can be really tough to accept, and because of the varied nature of the disease (worse one day, better the next), using the various helps can be confusing for people who know us casually. Our society has the idea that once you use a wheelchair you always use a wheelchair. If you’re in it for 2 days, and next walking around, people don’t get it and start to ask questions. I know I have pushed through the pain just because I couldn’t deal with explaining. I’m mostly over that now, but it took many years to get to this place of acceptance.
((((hugs))) to everyone working through this issue. It is a very personal one, and I know I couldn’t have come to peace with it without talking to many online friends about the nature of disablity, what it means, and how I relate to it.
Wonderfully said! Most of the help I’ve needed has not been offered, including this. I guess it’s somehting we can do for each other – to encourage asking and knowing what help there is.
As I said on my FB post: “I chose the Wheelchair option for the mall and the airport years ago. Better than extra pain! I need someone to push me, so we make many jokes about “The Beautiful Heroine (heroine) and her Pusher.” People hear, turn around and looooook at us so strangely – or maybe we ARE strange?!?!”
At the grocery, I choose the electric cart, but Friday and yesterday at various groceries, I was in PAIN!! So these accommodations will help with mobility, but not necessarily relieve or reduce the pain we have. [snivel!]
I do want to do without the wheelchair when I can. Options are an electric wheelchair or electric cart, walker (with wheels and brakes), or cane(s). Can’t use crutches. The walker and cane now hurt my wrists and shoulders and occasionally my elbows.
But your post asks, “When SHOULD people …” And the answer is – when THEY decide it is time to do so. There may be many reasons to be taken into consideration. Expense – even the cheap canes at the drugstore or grocery cost in excess of $12 – $25. Walkers cost anywhere from $50-$200. Wheelchairs can be paid for by Medicare or Medicaid, but many do not have those benefit programs. Without that assistance, wheelchairs will cost from $99 to [gulp!] $710!! Electric scooters run from $550 up to over $3000. Without assistance from insurance or a benefit program, a wheelchair or scooter will be out of reach for most of us.
Assistance from churches and from social groups may be available for some of us, and fundraising ventures from selling candy or popcorn, or setting up a booth at the local Bruster’s (with permission, of course) may provide the funds for getting the mobility devices we need.
So a major (if not THE major) decision point will be the funds available.
OOPS! I meant (“heroin”) and her Pusher!
Hugs to all – and a happy PAINFREE new year!!
For those that a traditional cane may cause a problem in hands and wrists (mine did for me so I only used when I was needing support but it was too short a walk to drag my wheelchair out of the car) there are two other options. One is a platform walker. They have them with wheels and without the wheels as well. [IMG]http://i4.photobucket.com/albums/y111/wayney/graham-platform-main.jpg[/IMG] Then another option would be forearm crutches. [IMG]http://i4.photobucket.com/albums/y111/wayney/Forearm20Crutches.jpg[/IMG] I use these now rather than a walker because you have a bit more mobility with the crutches than with the walker according to my PT. I notice the forearm crutches(AKA “Canadian crutches” or “Lofstrand crutches”) give me a little less stability than a walker does but, I adjusted quickly to them. I have to be careful on any slick surface and uneven surfaces are a little easier than the walker in my opinion. I see it this way: with the walker on grass you have to actually lift it rather than roll it if it has wheels. You have the 4 legs on the walker as well as your own to find a stable spot to step. So that’s a bit of a pain and it doesn’t feel as stable. With the forearm crutches, you have the two crutches and your own feet to find a spot for. The size of the area needed that’s level is a lot smaller for the forearm crutches than the walker as well. But if you need for stability and aren’t as concerned about the mobility then the walker is a better choice. I find that the crutches aren’t too bad for my hands, wrists and shoulders. Once in awhile my hands ache using the crutches but they do so at times with the walker too, for me it’s just a grip issue. I am getting a bit of a callous on my palms from the crutches. But I’m ok with that. I am so glad my PT wanted me to learn to use the crutches before I came home. The walker is a bit bulky in places. We have a narrow hallway where our washer and dryer are and I had to walk sideways with my walker to get through there. One thing my PT insisted on me learning was to walk backward. And I’m so glad he did. Opening doors that open into the room you’re in is not easy without the ability to walk backward. He had me walk from their PT dept through one wing of the nursing home. We went to the main lobby which was not busy after 3pm. Then he had me walk backward about 75 ft. One other day, I walked from the lobby to the nurses station backward, which was well over 150ft. But, I learned one day how good an idea that was.
Anyway, these are two options that can help make the strain on the hands a lot less. When I started using the platform walker, my left hand was still fairly contracted in the ring and pinkie fingers. They were drawn down to my palm. But the platform walker was not really hard on my hands. My forearms took most of the weight. And now my hand is much better (thanks to OT and using the E-Stim) so holding on to the crutches doesn’t bother them too much. It depends on how hard I grip. I tend to grip a lot tighter than I need to so I do feel stiffness, but if I am conscious about how tight I am gripping it. then I relax my grip and it’s not too bad. In fact, to get around my home, I pretty much only use my crutches. I tend to use my wheelchair to sit at the desk, to sit in when I dress and once in awhile when I mop the hallway. I’d end up on the floor if I tried to mop while using my crutches! Thar’s another thing my PT addressed with me that I kinda dreaded but was glad he did it. He put a mat down on the floor in the therapy room and had me get down on the floor. The purpose in that was so I could learn how to get up off the floor in case I ever fell. He had me use both my wheelchair (with him holding it stable) and the low table they use for exercises. It was around couch height so I know if I ever fall and haven’t gotten hurt to the point that getting up will cause more of a problem, I know I can use a stable surface to get myself back up off the floor. We also worked on climbing stairs with both the walker and my crutches. He said I wasn’t NOT to use the hand rail as I was learning. That way if ever faced with steps where there was no rail, I could do it. It’s been handy for stepping up on curbs, another thing we practices.
But without my crutches I wouldn’t walk nearly as much as I do now, simply because a walker can be hard for me to maneuver.
Another thing with the forearm crutches is that you can carry things while using the crutches. Since there’s a cuff around your arm, you can just use your arms to move and steady the crutches and then be able to carry things. I’ve not gotten good at carrying anything much other than say a bottle of Coca-Cola or small items.
I have been diagnosed with RA for over 40 years. Pain and fatigue and worsening disease have gradually erased my proclivity to not use mobility aids. For instance, falling flat on my face on the concrete was the clue that I needed the steadying of a cane. Hard on wrists, but not as hard as the concrete–finding that I was doing my shopping at 7-11 because I could get in and out without a total collapse helped me face the fact that a long trip through the grocery or the mall means using cane, WC or scooter depending on the day. My doc tried to get me to get a handicapped tag for a year before I could bring myself to get one–now I have not just the tag but the permanent license plate. IF I have to walk a long way to get into a store, I simply cannot go–that is a fact.
I have not liked being forceably retired on disability from my job because I was found to be unsafe as a nurse on psych ward. I did not like being told by my doc that the job I found nursing which I COULD do was putting my health in jeopardy after I got one to many infections because of being immune compromised from my meds.
This disease has robbed me of so much that I have HAD TO LOOK REALLY HARD FOR THE SILVER LINING. I always felt that I was making my children the odd balls with a mother in a wheelchair. My girls (now all grown up) have told me that they felt growing up with a disabled mother helped them to be more sensitive to the needs of others and more aware. My Girl Scout troop who were going to be marching in a parade would not let me miss out. They arranged a rota for pushing me in my chair for the entire parade route. I now work in a situation where people around me are aware and suggest I sit down and rest when they see that I have hit the wall physically.
I know this is probably a scattered note as it is one of those no sleep nights. I just have to say and I say it to myself often–use whatever help you need including asking people for it.
I come from a family of people with RA. It was always a “shame” to them to use a mobility device. I don’t understand false pride. If you can’t walk, ride. There is no shame to it no matter what members of my family thought!
This couldn’t have come at a better time for me. I’m currently on a “break” from pain meds, self inflicted to see how bad off I really am without them. I have SO much shame and even guilt about my pain meds, I constantly second guess myself, wondering do I *really* need this? Should I just suck it up and be in pain? Is the pain really *that* bad? Seeing your post has helped me realize that I don’t have to play these mind games with myself. I just look at my quality of life with pain medicine (I can function almost like a normal person, except for the first couple of hours of the day, and take care of myself and my kids) and without (I go nowhere if I can help it, lay on the sofa feeling suicidal from facing the rest of my life in pain, and neglect both myself and my children). It’s not really much of a choice when I see it in black and white. Thank you!!!
So, so, glad that this has happened for you, Amy, that you can now see that taking the help/using the meds/whatever keeps you going, is just using available aids, and nothing at all to be ashamed of.
Hold your head up high! (- well, that is, if ya can! – mine is pretty well set on my neck at one angle, ha ha ha! ;~} )
I made the mistake of telling some one yesterday that I have had almost two weeks of good days together. Then I had to prove to myself that I was doing so good I should do some yard work. And I stood in one place for about an hour speaking with someone else….and was crippled like crazy an hour after that. Couldn’t hardly walk and had to take an old dog out to do her duty, both of us limping along. At least she walks better once she gets on the grass. Hands swelled up …oh,hello flair hadn’t seen you in a while. I would say welcome back except you are not welcome, no not at all!! When will I learn?? When I looked back over the last two weeks, I realized that I had done virtually nothing except rest and read. No wonder my symptoms had eased. Oh well, at least I had almost two weeks.
Very familiar. Sounds like the usage prinicple to me, Becky. https://www.rawarrior.com/what-is-it-like-to-have-rheumatoid-arthritis-part-1-the-usage-principle/
Yes Kelly, you are right. I need to send that one to several folks I know. I’m so tired today, wore out from fighting the pain. Oh well, this is the path I must take so I will have to make the best of it. Now to put a smile on my face while I take applications to several job openings. Hmmm, wonder what my chances are going to be when I limp in. Going to laugh cause I’m tired of crying!!
I’ve had RAD for 35 years – I’ve used a cane, a regular walker, a platform walker, a transport chair and a wheelchair. I’ve even had to use a medical transport van when I couldn’t get into a car cuz my hips were so bad.
I’m not as self-conscious having to rely on medical equipment as when I was in my 20s. I’ve since learned it’s more important to conserve my energy by managing pain rather than worry about how I look to other people and what they may think of me. After all, I’m the one that would be in pain – not them.
By relying on medical equipment I haven’t “given in.” I think it’s just the opposite. I will do what it takes, use what medical equipment that’s available, to get around and be out and about. In fact I think it’s great that more physically challenged people are out in public places cuz then more buildings and places will design for easier access. It also gives others the opportunity to practice some old-fashioned courtesy and be helpful and open a door if needed.
I am buying a mobility scooter today!
: )
So excited and happy. I have become increasingly homebound. I have very bad RA and neuropathy in my feet, still uncontrolled, still trying different drugs.
In the meantime, I need to get out to parks. The scooter is the perfect solution for me.
It took me a year to “give in” and get a disabled placard for my car. I now see all of this resistance on my part as wasteful. Right now, walking in a parking lot (or anywhere) is not a good use of my body. I have a seated home exercise machine so I can stay in shape. But walking only makes things worse right now.
Can’t wait to go bird watching again!
Enjoy the birds!!
Christina – so happy that you are doing this.
Bird-watchers sometimes use binoculars, right? Because they are a really-useful-aid? To help them observe better?
No-one thinks that a bird-watcher is “cheating” or “slacking” or “not trying” when they use the aids they need to help them see! Why would they?
This is such a positive and happy move that you are making, to get the wheels you need, to take you where you love to go. Happy days, happy birds, happiness I wish for you ♥
What a clear and wonderful reminder to us to just reach out and use what we need. Thank you.
I can say I had figured when I was bad enough to get a handicap placard or whatever I would just do it. Well, my RD filled out a handicap placard form at my last appointment. It made me feel sick to my stomach. It is still sitting in my car and I’m not sure when I will do something with it. It certainly is easier to think you will use something to make your life easier than it is to actually do so, especially when it is visible to the whole world. It even made my stomach knot to type this. It is one of those things that a year ago I would have never imagined needing, or at least not needing for another 30 or 40 years.
Pride can be a painful thing but it is awful hard to swallow.
I walk unaided, just slowly with a limp that seems more pronounced all the time (at least to me). Only once has anyone at work noticed my limp, I actually told them why and got the “I have that in my finger” so left it at that. With the amount of explanation I had to give my family and in-laws (even with family and friends with RA) I really don’t expect a coworker to actually understand. My family understands so that is what is important to me.
I am thankful that my RD is pro-active in my treatment and has been optimistic about each new drug or dose for the 6 months since I started this misadventure. Now two weeks into Enbrel (first biologic) and he expects that I should feel much better at my next appointment in two months, he was hoping that I would be one of the ones who responded to the first few doses. I appreciate his optimism as it is hard to have it myself at times.
Mr. C, I hope the Enbrel makes the placard unneccesary! That is always the hope! But as others have also commented, it’s certainly a blessing if we need it. We should each do what we need to wtih our disease, and support each others’ right to make these choices – do what is best for you.
Thank you for the thoughts. I certainly hope and pray I never have to use the placard, though I am thankful that I can have it when/if I need it. I think what makes it hard to accept is that it is just one more thing to remind me of the physical limitians that are quickly advancing (beyond the ever changing physical limitations, exhaustion, pain and list of medications).
I started taking Prednisone two weeks ago and wonder now if I should have. I didn’t research side effects. I was so desparate for help that I filled the script and started taking them. What do other’s think about use of steroids to reduce painful swelling and inflammation?
Thank you all so much for sharing…I think I am finally ready to buy a wheelchair. After a little over an hour of shopping with family Saturday my feet and ankles were twice the normal size and the pain required me to stop and sit while they finished the outlet mall. The only reason I made it as far as I did was the pain medication I took ahead of time to prepare myself. I wanted to be with them so I endured the pain as long as I could. After many times of trying to get myself to try the electric wheelchair and leaving instead, I have used a wheelchair 2 times at Wal-Mart and what a difference it made. I am thinking I will get the folding wheelchair and try pushing myself with my feet when I can and have the removable leg rests for when my hubby pushes me. I have looked at so many but have no idea which one to buy. Any suggestions on folding lightweight wheelchairs would be much appreciated.
I really like my TiLite. I don’t have the titanium version (I had to pay for it myself) but mine is still pretty lightweight without the wheels on. And you can get the COOLEST paint jobs 🙂 Sounds silly, but you know, it can help you feel better about it when it reflects your personality!
I finally give into using a cane full time 4 1/2 years ago. The problem is that now my right shoulder is very quickly deteriorating to the point where I don’t know how much longer I be able to use a cane. But I need the cane to walk because my knees are almost completely bone on bone. So they thought of a power chair or scooter scares the crap out of me.
Heh heh heh….my wheelchair and my 2012 Camaro are both bright red 🙂 My way of saying “so what? I’m me”. Both of them have “attitude” and both are necessary to get me around!
I’ve had RA for 24 years, along with Sjogren’s and Reynaud’s, and now OA in my spine. I used a wheelchair from 1991-1994 and then just this past year “gave up” and got my TiLite. It doesn’t have arms, though it does have handles for my husband to help me when I get too tired to wheel myself. I walk as much as I can every day, usually meaning around the house, doing morning chores, maybe going to morning Mass. By 2:00 every day, without fail, I’m either heading for the Norco bottle or I sit down in the chair and stay (mostly), at which point I rarely need the Norco. My doctor would rather see me take the pills. My doctor can go fly a kite. I can’t think, I can’t write or do my artwork when I’m on 7.5 mg of hydrocodone, and I want my life. I’ll take the chair over the drugs.
I’m currently trying to figure out whether a bike rack on the back of my car would carry my wheelchair 🙂 (Camaro trunks are small and while I *can* get my chair in I’ve already dinged it once, so I’m looking into alternatives).
Bottom line: do what YOU need to do. And don’t be afraid to speak up and say “excuse me”…loudly, if necessary :-)…to get people out of your way.
I commend all of you guys who have opted to use a wheelchair or motor scooter to get around. My grandmother who has arthritis won’t even do this. She has a walker, but her arthritis is supposedly so bad that she can barely walk or get out of bed. If this is the case, obviously the walker isn’t sufficient enough anymore. I keep telling her to use a wheelchair or to get a power scooter, but ALWAYS to no avail. She claims that she’s “too vain” to use a motor scooter or wheelchair, yet she lays in bed in her own urine! She also claims that she’s “too clumsy” to use a wheelchair or a power scooter, and she never learned how to drive,but she can manage to steer a walker…? There are MENTALLY HANDICAPPED people who get around in these devices….? Then she claims that she won’t be able to get in and out of the wheelchair or power scooter because she’s “too crippled.” I’ve never even heard of this type of mobile device incapability. She’s just too lazy to step out of her comfort zone that she’s so disgustingly used to!! She just lies in bed all day with excuses. Everything is just “too hard.”
She has confessed that she just doesn’t want to do anything.
I think her extreme laziness is seriously the reason why she stubbornly refuses to try to use a wheelchair or a power scooter. It’s really selfish of her because she just lies in bed and completely depends on her family (mainly me) to do everything for her which includes (fixing and bringing her meals, cleaning up after her, etc.). She doesn’t seem to understand the impact that her lifestyle has on the people around her. It’s just all about her and her arthritis. My grandmother knows that lying around all the time just worsens her condition, but again, she’s just too lazy and unwilling to try to change her situation. IT’S REALLY FRUSTRATING. She claims to be “so weak,” but as soon as I bring her some food, she all of a sudden POPS UP AND EATS!!!!! She can roll over and eat a bunch of junk food,(which by the way, obviously adds to her obesity and disability), but can’t roll over into a wheelchair. HOW CONVENIENT!!!!! I don’t see how a person can be so inconsiderate and oblivious to the imposition that they thrust into other people’s lives. In retrospect, my grandmother has never been active. I’m 30 years old, and I’ve always known her to lay in bed, even before her arthritis occurred. Before she retired, she was a secretary, so she sat in an office all day. She would then go home after work and lie in bed for the rest of the day and night. She trained her children to do the cooking,cleaning, and shopping. She’s always had some sucker to do all the physical work for her. This is probably, at least, a big part of why she has arthritis to begin with. Now, the burden just completely falls on someone else. When I try to express how I feel to her, she just says to stop doing anything for her. She knows how unrealistic this is. She knows she has leverage since she is my grandmother. She knows that her family can’t and won’t just let her fend for herself, because if no one does these things for her, she STILL doesn’t take any initiative to do them herself. I think she secretly uses sympathy and guilt on other people to maintain her disgusting and selfish lifestyle. This situation is UNBELIEVABLE!!!!!! SHE NEVER DOES ANYTHING!!!! She always says “I did this to myself, I know I did, but leave me alone!”
That’s how I feel.
Recently my rheumatologist started treating me as if I have RA. I don’t have the markers in my blood work, but I know that up to 20% of people don’t. The pain started in my hands and wrists and is now also in my ankles. My fatigue ranges from moderate to severe, which has made going out very difficult. I have an old wheelchair from my mom that helps, but my spouse cannot push me for very long due to knee problems. My spouse suggested a walker, but that won’t help with the fatigue and will make my wrists worse. How can I get my doctor to agree to a wheelchair so that insurance covers it? I don’t want an electric chair because of size and transportation logistics. I was hoping to get a manual chair with power assist like the SmartDrive or the E-motion. Is m also looking into a stability dog to help when I’m mobile and possibly help pull my chair.
This really hit home for me. I was diagnosed at age 26. I am now 62. I have a electric wheelchair but I hardly ever use it. I was scared I would lose more mobility if I overused the chair. The last week has been really bad. Yet I actually forgot about the chair. Crazy. I suffered trying to walk in my home. Today I realized I need to use the chair on days my feet, knees, or hips make it very painful to walk. After all these years of struggling it’s okay to use the chair on bad days. I have to trust that I will not use the chair unnecessarily.
Thanks, everyone for your comments. They really helped me make the decision that is right for me.
Love this blog. So informative and interesting.