This is a topic I’ve discussed a lot over the years since my health started to decline due to Ehlers Danlos. There is a lot of stigma associated with mobility aids, I’m often questioned why I use a wheelchair when I can walk or why I use crutches when I have a wheelchair. The reasons for my personal choices are varied and sometimes pretty hard to understand from an outside perspective.
So how do you decide if the time is right to use a mobility aid? Well, the first step is looking at why mobility aids are used by anyone.
Wheelchairs, crutches, sticks, scooters etc can help in a number of ways:
Crutches, I’m sure a lot of people have sprained an ankle or broken a toe.. short-term, usually fairly simple but not very fun!
When you’re given crutches for an injury the main reasons are usually to help you get around and to help you rest the injured body part so it can heal. The reasons for people with chronic conditions can be fairly similar, to help you get around or to help rest painful or damaged body parts. They can also help in other ways, say for example you’re out in town, its busy and you’re in pain or worried about falling over. Crutches can have an interesting effect, suddenly the busy jostling crowd around you takes a bit more care, spends the extra few seconds holding a door for you or they let you go ahead at the check out. These things might sound insignificant to healthy, pain-free people. However, if you’re in so much pain you just want to lay down, or you’re so tired you feel like you’re dead on your feet, that little bit of care can help massively. For people with back pain crutches can really help too. A lot of back pain sufferers say they feel like they are sinking into their own joints, like the weight of their own upper body is just too heavy to cope with. Crutches can help ease the pressure, I feel like using crutches lifts my upper body and helps take the pressure of the joints in my spine and pelvis. This makes activities like standing and walking much easier. Sounds good right? Before you all rush out and buy yourself a pair there are some downsides to consider.
Crutches are a hassle, if you’ve ever been on crutches and tried to get yourself a coffee you’ll know what I mean. It usually goes something like this…
Approach the counter, place your order, (so far so good but now comes the hard part) its time to pay, you lean one crutch up against the counter and reach for your purse/wallet. Just as you hand over the money your crutch slips to the floor, While trying to pick up one crutch you either drop your other crutch or your bag slips off your shoulder or you drop the change the barista is handing you, at this point some helpful bystander steps in to help and you end up awkwardly apologising while thanking them and continuing to juggle your many possessions. Eventually you gather everything up and move over to wait for your order. All too quickly your order has arrived. You now have two options, stubbornly refuse help and move on to the next level of possession juggling with added coffee or swallow your pride and ask for help. This (although it might not feel like it for you) is not a big deal, most people are happy to help. The journey might be pretty different but the end result is the same you’ve still got coffee.
This complex series of events is why normal healthy people don’t like using crutches. The next story is how getting coffee feels if you’re not using crutches but probably should be!
You approach the counter and join the back of the queue, you are only there for a matter of minutes but the pain is already beginning to build, in my case, as the blood starts to pool in my feet I get a dull ache that spreads from my toes to my knees, the pain in my back builds and spreads from a dull ache to an intense throbbing with added sharp stabbing pains. My heart rate rises and my head starts to feel fuzzy… I can hear my pulse rushing in my ears and my vision starts to fade at the edges. Everything gets louder and I get too hot and flustered but everyone is different. By the time you reach the counter all you want to do is lay down and stretch out on the floor, you can’t remember what you wanted to order. You eventually decide and place your order, after dropping your change and receipt you gather your possessions and wait for your order. When your order arrived you have two choices. Struggle, hands shaking and staggering to the nearest chair or swallow your pride and ask for help. This can go one of two ways, the person behind the counter will help happily or they will look at you try to decipher why you need help? are you lazy or do you have some kind of invisible disability? If they decide you are probably lazy then you’ll have to explain about the invisible disability or admit defeat and struggle to a seat by yourself. As much as it sucks explaining is actually the more proactive approach. If you have educated someone on the existence of invisible disabilities then the next time someone who ‘looks’ normal ask for help, maybe they won’t have to explain.
The thing you really have to ask yourself is this… Do the benefits of using crutches out weigh the downsides? if so then using crutches will probably help you so its worth giving it a go!
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Wheelchairs.
The most well know reason for using a wheelchair is because you’re paralysed. This is all well and good but there’s much more to the story. I once read a statistic that less than 10% of wheelchair users are actually paralysed. I’m not sure how accurate that is but from my personal experience, the vast majority of my wheelie friends are actually able to walk (not necessarily very well though!)
Some of the other reasons for using wheels are as follows.
Pain, fatigue, poor balance, loss of sensation in your lower body, to avoid injury (like joint dislocations in hypermobility), because you’re likely to fall over or because being upright could be detrimental to your health (Like Postural Tachycardia, Syncope, Seizures etc)
A wheelchair works much like a walking stick or crutches its simply a tool to help you get around, owning a wheelchair doesn’t mean you’re not allowed to walk any more and it doesn’t mean you have to use the chair if the easy option is walking!
The type of chair you need will depend on you. Manual or electric, power assist, scooter, or even a combination of different chairs for different days.
I use a chair to help me LIVE my life as supposed to just EXISTING. I can go shopping without fear of falling over, I can pace myself, I can avoid messing up my blood pressure and heart rate, I can rest my most damaged joints and perhaps most importantly I can wear high heels! Without the wheels I’m in pain, tired, tachycardic, constantly at risk of falls and stuck in leg braces and sensible shoes. My life would actually be much easier if I could use wheels all the time but there are a few issues with that.
Firstly, very little of Planet Earth is wheelchair accessible, its much more accessible than it used to be but it’s still not great. Even in wheelchair accessible buildings there are usually high shelves and tall counters. Actually, if I could completely change the whole world to suit my needs I wouldn’t. I need low counters and ramp access but I have friends and family who are tall with back pain, they need tall counters. I have friends and family who can’t walk up ramps because of musculoskeletal problems. There will probably never be a scenario where the world suits everyone’s needs, but given that wheelchair users are somewhat of a minority we tend to face more obstacles with accessibility than other people. I can go out socially on wheels, I have enough energy to dance and I’m not likely to fall over so I can brave pubs with friends but the number of pubs I can actually get into is depressingly low. I can go out shopping now that I’ve got the option of wheels but I can’t get up steps (and people freak out when I take my chair up escalators). I can’t squeeze between narrow isles and I can’t reach the fun stuff that’s displayed up high. Luckily for my I have the ability to get out of my chair and reach the high up stuff but that presents another issue. Society isn’t used to wheelchair users who stand up. I’ve heard some really horrible stories from friends who have been set upon by angry folks who don’t understand. Just because someone can stand for 30 seconds doesn’t mean they can walk a mile or work full-time in an active job.
Some of the other issues with wheelchair use are health related. Muscle wastage can happen surprisingly quickly and its much easier to lose muscle than it is to gain it back! I might not walk very far compared to my ‘healthy’ friends but I do an hour of physiotherapy a day to make sure I don’t lose muscle strength. Since I started using a wheelchair I’m actually stronger than I was on crutches, this is primarily due to energy conservation. I have enough energy now to actually do my physiotherapy!!
Muscle wastage isn’t the only issue, a lot of the body’s systems are partially dependent on active muscle use. Blood pressure / circulation and digestion are negatively affected by wheelchair use. My digestive transit is much slower if I spend the majority of time in my chair.
Pressure damage to skin is also a big issue for people who use a chair a lot, this can be at the very least horribly painful and at worse fatal. Pressure ulcer > Open wound > poor circulation > poor wound healing > infections > sepsis. Plenty of wheelchair users go their whole lives without a pressure ulcer but for those who do get one it’s no laughing matter!
I don’t want to put you all off using wheelchairs, the decision to get a chair changed my life for the good. I’m so much happier now I have more options to go out, I’ve made progress with physio, I’ve got more of a social life, I’m more independent and I’m surviving at uni so hopefully I’ll have a degree soon. I’m also getting much better at wheelies and my upper body strength has improved. BUT before you decide to try wheels you need to consider the possible downsides.
In short the decision to use a mobility aid is down to you, you know your body best and only you will know if using a mobility aid will make your life easier or harder. I would encourage you to explore your options and if you decide to try a mobility aid then get used to it gradually. Theres no need to leap into full-time use, its ok to leave your crutches in the car and only use them when you need them.
I hope this rambling post has helped you in some way, if you have any questions please feel free to ask.
Ciao for now and thank you all for sharing and reading along, this post has been read over 350 times in the first 5 hours since I posted it!
Hi! I have hEDS and possibly POTS. I’m 18, and in recent years, my joint pain and instability has gotten worse. It’s all a lot worse in my left leg, though, which is why I’m considering a cane. What’s the process for getting one?
Hi there, the process is pretty simple, you buy one you like! It’s pretty uncommon to get mobility aids off the NHS etc these days. If you’d like further advice please feel free to drop me an email to hello@jboccupationaltherapy.co.uk
I could really use some advice. I recently got diagnosed with hyper mobile eds and I’m really lost on what to do. It mostly affects my back, hips, knees and wrists. I don’t know if a wheelchair is the best option because I tell myself it’s not so bad even on days where my back hurts just from standing. I have a cane that I use sparingly because it bothers my wrist (which I just had surgery on) and again I tell myself it’s not that bad. Does any one have any advice because I’m so lost and need help.
Just reading this, I know it’s a bit late. I’ve lately been questioning myself if I should get forearm crutches or a wheelchair. I’m in a residential treatment center right now for my mental health, so can’t do that now. I’ve had an uptick in pain the past few days. Also an uptick in instability. But only in my legs. I don’t know what makes more sense though, crutches or a wheelchair. I don’t see my PCP until August so I’ll bring it up then but I wonder what makes the most sense. I worry about deconditioning in a wheelchair. If I were to do crutches they would definitely be forearm ones. I don’t know what makes sense at all.
There’s no reason (besides cost) why you can’t have multiple options and choose day to day. You’re right that deconditioning can be an issue but if you’re in less pain from walking, you might be more able to do targeted rehabilitation, swim, do pilates etc. Activity is really important, but walking isn’t the only activity!
I have fibromyalgia and IBS and probably some other kind of chronic illness that we don’t know about yet. I use a cane most of the time when I leave my home. I don’t always need it, but if I’m going to be standing a lot, walking a lot, or of any steps, stairs, etc. are involved, life gets immensely more difficult. Sometimes I will have terrible pain and weakness that comes on so suddenly and severely that I cannot stand or walk very easily and I could be in the middle of my church’s Easter banquet or the grocery store. My whole body cramps up and I am hunched over and limping if walking at all. Sometimes I just need it to get up the stairs to my third floor apartment, other times I cab do the stairs somewhat slowly but with relative ease. But it’s impossible to predict when I will need it, so I try to always have it. But it takes one of my hands and is just another thing to carry. Pushing a grocery cart with it is a pain in the rear and trying to carry anything large or heavy is impossible for me with or without it. I rarely do my own grocery shopping anymore and order for grocery delivery whenever possible because all of the walking and standing and reaching and lifting and pushing with grocery shopping is so painful and exhausting that I might be out of commission for 3 days after buying a week’s worth of groceries. I get asked all the time why I have a cane or a handicap placard at my age. I don’t have a cast or a brace so I don’t appear to be injured. Some people are so sweet and helpful when they see it, but I can see the curiosity and silent assumptions on their faces. Others are complete jerks and will purposely block my parking spot so I can’t get in my car or back out, follow me through parking lots and public places to harrass me, or sarcastically address me as “madam.” I’ve even had my cane stolen before by an older woman who didn’t think I had the right to use one. It was a tough decision to get one, but it’s also a daily decision over whether the benefits outlay the potential social stigma and how many people I’ll have to explain myself to or how many people won’t even give me a chance before they judge me.
Just finding this. I’m thinking of using a wheelchair when my family goes on holiday and we do a lot of walking. Not sure if it’s worth using in the airport. I’ve always thought a crutch or crutches would be out of the question since my shoulders/wrists are pretty unstable, don’t know how zebras use them?? But also my legs are where I get the worst pain…
Assisted travel is always a good option! Not all bendy folks have the same issues with joints so what suits one person sucks for another. Lots of people can use crutches with minimal issues.
Every zebra is different. My shoulders are quite pk, my ellbows doublejointed but not painful. So crutches are a good option for good days. My legs feel weak, but my upper body gets more strength. But My problem it POTS , so when I walk with crutches I suddenly get a dull head, feel very week and have to sit down. So I use crutches in the microcosmos of my little town, but a wheelchair for longer distances.
I just came across your post on pinterest, and although it’s pretty old now, it still helped a lot. I’m about to ask for a referral to the wheelchair services, because although I use my stick more now, I still don’t feel like it helps the pain enough. Yet you do feel a certain level of am I crazy for thinking I need this?! I know I’m not, my Endometriosis has limited my mobility so much and I’m at the point where I’ve accepted I need help. This post has helped solidify it in my mind though!
Hi Katey,
Thanks for your comment, I am so glad you found the post helpful! It’s such a touch decision to make. I know I felt a lot of doubt when I first asked for a referral but the first time I used a wheelchair in the supermarket was lifechanging. Like is this how shopping is supposed to feel?!
I really hope you get the support you need and can adventure a little further and with a lot less pain on wheels! Best of luck.
I realise this is an old post but if I found it and read the comments so might others.
I use a adapted tricycle outside, (EDS III) not because I can’t walk, but because it is quicker, easier, less tiring and lower impact. It’s semi-recumbent with a supportive seat and pedals which hold my feet on. It wouldn’t work for indoor use because it is seven feet long and has too wide a turning circle; however, some other types of tricycle might. The problem is exactly the opposite from using a wheelchair – it doesn’t look like a disability aid, so a jokey number plate saying something like “M0B1ITY SC00TER” might be helpful if you need to take it where such things are not usually taken! On the other hand, no-one questions your standing up and people generally think it is really cool. Also, you can exercise your legs – though I have to be a bit careful with my hips due to the rather odd positioning of the pedals.
Fab idea! Thanks for sharing!
Hey Jo!
I came across your article while doing some research on different mobility aids. I am considering getting a wheelchair, but I am not confident with myself or that I even qualify for a mobility aid. I am 16 (almost 17) years old and I have POTS, endometriosis, hyper-mobility, and joint pain and ligament damage from being hyper-mobile. I am supposed to be starting physical therapy soon and my doctor says I need to go out more but it’s so difficult because I am exhausted and have full body pain most of the time. I am late to school almost every day because of exhaustion and not wanting to walk because I know it will hurt. Stairs are my nightmare and I am not allowed to use the elevator at my school unless I get a pass to. I need to get more exercise but I feel sick, nauseous, and dizzy every time I try to work out, even if it’s just light exercises. Not a lot of people listen to me because I’m so young and many of them think I’m just being a lazy teenager. I don’t know what to do or to help myself get to school and feel ok enough to go outside and exercise. I also have social anxiety and the thought of me standing up from a wheelchair to reach something and having someone confront me (especially at work) scares me. I’m not afraid of questions but I’d rather strangers leave me alone. I’m hoping maybe you or someone else could offer some kind words/advice? Thanks so much for writing this guide to mobility aids, as it has opened my mind more to the pros and cons of using them. Wishing you good things!
Hi Peachybasil I’m really glad you found the information useful. Have you had a chance to look around the rest of the site? I’ve actually written quite a bit on managing hypermobility syndromes since they’re one of the things I live with and work with too! I’ve written a few posts on managing exercise which you might find especially helpful. As for the pass for the lift what would you have to do to qualify for a pass? It’s definitely worth investigating. As for mobility aids there are loads of aids other that the wheelchair which could help you just as much but would be less of an adjustment. A stick, crutch or even a little folding seat-stick would potentially work for you. Where are you based? I can work with clients via video chat throughout most of the world if you’re interested?:)
I feel I’m in a permanent fog of exhaustion having a 9 year old, who is always on the go. Oddly the tendons on my thumbs have totally given up, and my physio insisted on a surgical consultation. I do need a chair on occasions but I have a hard plastic splint holding my thumb together – meaning I can’t use it. The rheumy told me things are in my head but on seeing a psychologist, they deemed I’m “with it” and physical issues causing the issues. How can people get others to take them seriously? Barely leaving the house right now, given I can’t use my sticks with this plastic brace.
Hi Julie sorry to hear you’re having such a rough time. It’s worth speaking to whoever made the splint and whoever provided your crutches there are other options for sticks certainly such as a gutter crutch which wouldn’t require the use of your thumb. If psychology have decided your issues are totally physical it might be worth asking them to writ to your Rheumy. A good letter goes a long way.
I’m seriously consider a chair because I just can’t get out of the house for more than a few mins due to either pain which causes me to hunch over (not easy to walk that way) or severe fatigue thanks to malnutrition and weight loss thanks to my GP and Heterotaxy. And the constant vision blacking, going to pass out. But I’m torn because two years ago my ex surgeon scoffed at me when I told him things were THAT bad, I’d considered a referall to wheelchair services. Some months I don’t leave my house at all and it’s ruining my life 🙁
From my perspective it’s definitely worth considering. Your quality of life at the moment is suffering isn’t it? I’d also point out that if you do pass out you might well do some damage on the way to the floor.. walking isn’t always the safe or sensible option!
I have chronic back pain, Vestibular Migraine w/Hearing Loss and Vertigo, and anxiety. I currently use a cane on my bad days (which are more and more common any more), but the pain in my back is getting worse and more constant. I had already purchased forearm crutches in anticipation of this, but I find myself reluctant to admit that things are not getting better. I honestly don’t know how to convince myself to switch, or how to explain to my family that it is time, and needed. I really enjoyed your blog immensely.
Andrea
Using mobility aids isn’t a sudden or permanant change. It might be that you can still use your cane the majority of them time if you use the crutches occasionally. It’s also possible that using mobility aids will make you feel better in the long run! You don’t nessesarily have to explain, just use one crutch and see how it goes, if anyone asks just say it’s to help you walk. Keep things simple 🙂
Thanks! 🙂 It’s just difficult to admit things aren’t getting better. Thanks for the advice, I will definitely remember it next time I am asked.
Andrea
I know now is the right time to use crutches but my mum won’t let me 🙁 I don’t know what to do. I have a referral to an OT to see if they can help me but I’m in so much pain trying to get around and my mum won’t even let me have braces.
Fingers crossed the OT can help. How old are ou if you don’t mind me asking? it’s not nessesarily your mums choice. Have you showed her this post or explained the reasons why you think they’ll help you? It’s worth having a discussion with her, she might have really good reasons for not wanting you to use crutches or she might just not understand why you want to. 🙂
Thankyou for writing this post. I’ve stopped going out now as it’s just to painful and exhausting for me to manage. I’d love to start going out again. I don’t know where to start with buying a wheelchair or scooter and I’ve kept pushing myself despite being in such bad pain and my joints popping till just the thought of just a simple shopping trip to someone healthy is no problem but fills me with dread and anxiety.
Lots of places (shops for example) have scooters you can borrow, it’s good short term while you look for your own. I would recommend a referral to wheelchair serices if you can get one. They’ll be able to make sure what you buy is appropriate 🙂 Show rooms are also good. With mobility aids I always recommend trying before you buy 🙂
Thanks for writing this post. I’m struggling with acceptance of having to use a w/chair. But since I’m existing in bed for most of the days, I may as well swallow my stupid pride and start to live again. I’m afraid of people judging me since I can walk short distances but I do end up paying for it due to pain and fatigue.
It can be tough and I’ve had to explain my wheelchair/walking thing more than once but people are usually pretty accepting once they know how I feel. Good luck with it and I hope wheels can improve your quality of life!
I’ve been diagnosed with Ehlers-Danlos for 2 yrs now I have yet to even be able to see any one that can tell me just how badly my joints have been affected! For as long as I can remember my hips have always “popped in & out” very young only when running~then also @ a jog~then also @ a fast walk~ and now (for about 10yrs) even just a walk! I had brought this up to many Drs (even my back surgeon, 2nd one) & let him know that even @times it felt like they would “go out” & had catches in them! He told me I had nothing 2 worry bout, it would take a freight train to dislocate my hips! (I GUESS LITTLE DID HE KNOW THE FREIGHT TRAIN HAD HIT ME @ CONCEPTION!) But they r 2 the point they hurt so bad! My shoulder has a terrible “catch” I think it’s frozen shoulder. Both my wrists go completely out, I’ve got lrg ganglion cysts on both in the joint, which I’m sure doesn’t help any, all’s u have 2do is pull a little & they just pull right out! My thumbs & fingers are locking up, I’ve called around to local physical therapy places AND NONE OF THEM HAVE EVER HEARD OF RING OR SILVER SPLINTS! I can see & feel my ankles going in and WAY DOWN with every step I take. I just don’t know what to do! There aren’t Drs around here that know much about EDS so I can’t get straight answers anywhere! I’ve done a lot of research & offer it to them, but most of them just disregard it! One shoulder Dr asked how I got my EDS DX I told him it was a clinical diagnoses, b/c insurance refused 2$ for the genetic testing 4the EDS & a few other things. HE THEN TOLD ME THAT B/C I DIDN’T GET THE GENETIC TEST THERE WAS NO WAY THAT I HAD EDS B/C IF I DID I WOULD’VE BEEN DEAD WAY B4 NOW! I told him I never sd I had the vascular type. I went to my GP b/c I think my toe or toes are dislocating @ the head metatarsal when I take a step, he asked me how I dislocated it, told him I did nothing (He knows bout my EDS, I’ve given him a lot of info, he sd he wouldn’t treat me 4 anything 2do w/my EDS!) he then told me u can’t ‘just dislocate a joint” I told him with the EDS that’s what happens. Asked him if I could get a couple of “weight bearing” views b/c I think thats when it’s happening; I went & got the x-rays NO WEIGHT BEARING he told me they were normal NOTHING WRONG I got my records they indicated that I have diffuse osteopenia~I did call him back to let him know that they were not ‘normal’ I need to see someone that knows about this, I just keep running into walls! I don’t have the income to pay for a lot of travel and/or medical bils, but I need a lot of answers & help.I have read that crutches or canes are not good options for ppl w/EDS b/c of the strain it puts on your shoulders & elbows, is this true or not?
Sorry you’ve had such a rough time of things and good luck finding a good Dr. As far as mobility aids go, it depends on the person and on how you’re using the aids. If you use crutches all the time with bad shoulders then it can cause problems but using them when you need them to rest you legs then it’s probably going to help your legs. It’s all a matter of balance. I can’t tell you you should 100% be using a cane but it might help with yor leg pain. Remember, just because you have aids doesn’t mean you have to use them so if you’re legs are ok but your shoulders are a problem just leave off the cane/crutch until you need it. 🙂 It might be worth seeing a physio, just becase they don’t know about EDS doesn’t mean they arent any use. They can still help with building muscle. As for genetic testing, there is no test for Hypermobility type. In the UK people don’t have genetic testing as standard it’s only done if a rarer type of EDS is suspected. I’ve never even seen a geneticist just rheumatology 🙂 I hope that helps
Hi! Hugs from a fellow EDSer 🙂 I have EDS and I’m.now a junior Dr working part time. My advice is as a fellow patient so not medical advice but I hope it is helpful X
I’d second Jo in seeing a physiotherapist!! Even if they don’t know about EDS they can be so good. I also found manual therapy is specialist rehab/sports massage v helpful to undo spasms and allow me to get the right muscles in a fit state to function (see particularly for snapping hip!).
But from EDS rehab I learnt the key often is to focus not on large (eg bicep) muscle strength but instead do small regular repitions of exercises that focus on small muscles surrounding the joint. Hip flexors are big priority for subluxing hips! These little muscles are easy to forget or have not really working and are key for stability. Also in some cases they just haven’t “switched on” or aren’t doing job when they should (known as motor patterns) ..in this case the right exercise can show subtle improvements very very fast (too fast to be a change in muscle mass). By teaching muscle to do its job! My ankle stopped hanging as much within 2 days of one hip exercise and that couldn’t possibly be incr in muscle mass. Second anything that strengthens your core is key as again it adds a stable base for the arms n legs/associated joints to work from. So hip flexors, Tummy muscles, pelvix floor, back muscles. Get them stronger and also get them kicking in (activating) when they should. A gym ball to just practice siting on and being able to hold yourself steady initially is a good cheap investment, but if v unsteady do it with a ‘catch me quick buddy’.
I found hydrotherapy the best as the warm water helps plus water acts like a mini compression suit and reduces weight of body so u can then isolate with tiny movements those tiny crucial muscles. It is highly recommended by UK top EDS physiotherapist along with surveys saying EDS patients found it esp benefitical. You may be able to get referral? But if not find a small pool with good access that is WARM (ones that do baby swim lessons or hotel pools are often a good bet!).
Non EDS physio often suggest starter exercises that are too advanced si ask them for the very first initial movement and when u can do that WITH GOOD CONTROL move to next step. Eg if doing mini version if Pilate’s bridge don’t move go lifting bum further u till u can lift bum off ground a tiny bit with your knees steady n not wobbling (your core needs to activate to achieve this) and till u can bring bum back down with control bit collapse down. If you can’t see physio look for Pilate’s and go for absolutely basics if u can get someone to check it is safe.
As for hips. I roll my eyes at anyone who says hips can’t sublux. Jo caught me relocating mine and that started my diagnosis journey. But it is important to distinguish between subluxations, dislocation (rarer in those still able to stand and walk at all) and snapping hip. Latter is super common even in “normals” and so the dr then wrongly assume that is what u refer to. You may well have both subluxation and snapping. Snapping u feel it ping and give and if you put your hand over hip you can feel something actually twang. If this is happening a lot it can mean your IT band down leg is too tight after working so hard with wobbly hips. Getting this sorted with manual therapy or roller n appropriate stretches n heat etc can make a big difference. It’s much easier to address I think than the other subluxing issue, and probably aggrevates subluxation.
For aids I found knee braces made a big difference. No pain or dislocation in my knees yet still worked. My subluxations rate dropped a lot with hinged knee braces (eg medi brave pro type) presumably as my hip muscles are getting less exhausted working against wobbly hyperextended knees.
So if you can stabilise knees and also work on core you then provide hips with more stability ABOVE and BELOW which naturally should assist!? This may or may not be right for you but a physio can help and u can experiment.
I have wrist splints from bad wrist days and find them hard to right with as that stoopid metal bit sits into palm. I’ve now got oedema gloves that aid a mild compressive force and can worn more easily.
You can get smart crutches that spread weight across shoulders n arms I believe!? So they might be handy but as Jo says alternating or varying depending on worst issue could be good.
Genetics as Jo says no current EDS III test and so rarely done. Criteria used are Beighton and Brighton combo.
Good luck! You aren’t alone and you can make progress X
Fabulous advice thanks Dr Emily! Water based exercise and pilates have both been great for me. You’re right smart crutches do indeed spread the weight along your arms much better than standard forearm crutches! X
Really interesting. The but about living rather than existing struck me! Also the being able to wear heels 😉 I’m really quite mobile and can safely walk with knee braces, although normal pace walking puts me at HR120> v quickly. Access to work are offering me a wheelchair for my on call duties-it makes sense in many ways-especially more energy for life and physio…but equally would cause a lot of confusion and could actually slow me didn’t coz hospital bizarrely is not set up for wheelies! Still deciding…..X
Glad you liked the post. I’d say go for it! Just because they give you one doesn’t mean you have to use it all the time. You can save it for bad days or when it’s icy in the winter. If nothing else you’ll have the comfort of knowing you have a back up for bad days! I did my last OT placement on wheels. I often just parked my chair by the nurses station etc so I could walk the not so accessible bits. Xx
I’m finally going to go for it…and get a chair. Similar to you I now expect I will park it by nurses station and mainly use it to get between wards and to teaching etc. Our hospital main corridor is so long and I realise not just physical energy but also mental energy is used planning to reduce walking on shifts. Eg if I don’t bring my lunch I feel pretty stuck as I can’t face the walk and queue to get food at the other end of hospital. I love the idea of being able to do my physio for an hour a day, or even half an hour and get to hydro. I imsgine thiz coukd result in a real imprivements. Oh and I want to wear heels hehe 😉
I’m preparing by mentioning in conversation with various people at work as something I’m thinking about/planning so I have to do less explaining and also I’m reassured by the understanding responses so far!
I hope that by using a chair I might be able to have move of a life outside of work, less pain and actually ultimately get stronger.
Thats awesome! I really hope it helps you get more out of your day! I’m sure you’ll make progress with physio quickly, the difference in energy conservation is staggering!
Thank you! I’m.excited/hopeful. Do you have any tips on preparing? I’ll be self propelling, no e-motion wheels so in particular any recommendations on what exercises or muscles to do prior to starting?
Take it slow! Paceing is super important and try to maintain good posture. Toe propelling can help passively, especially on hills. The best exercise for wheelchairing is wheelchairing I think!
Thank you so much for this article !!! I have never read a article covering this subject and I am at the crossroads now where I allowed my husband to go ahead and purchase my first wheelchair since becoming ill with Fibromyalgia over ten years ago. I now have secondary health issues. When the author wrote about standing up from the wheelchair and fearing the judgment from those with ignorant assumptions about my health I can relate to that anxiety. I am 42, married, & we have five children 19 and younger. I hate what this disease has stolen from the people I love. I am not the wife, mom, daughter, grand daughter, sister, aunt, & friend I use to be before this disease chiseled my life away. Trying to hang on to what little bit of hope I have that maybe I will feel better one day and if that never happens for me, then hooefulky I can learn to cope and accept this is my life now. Beth from Oklahoma
Thank you so much for your kind words! I’m so glad you liked my article, hearing feedback like that is a big part of the reason I write this blog. It’s wonderful to know I’m helping people ☺ best ov luck with your new wheels I do hope you get to steal back some of what’s been chiseled away. I know I have managed to make a lot more of my life now that I have the option of wheels. I have actually been to see a live band a fair few times this year which would have been impossible before I started pacing myself and using mobility aids when I need them. Take care and thanks again for your comment. X
Hi, I love your attitude to your wheelchair and how you say it helps you “live”. I still struggle coming to terms with using my scooter and I have had it for 9 years. People’s opinion about me using it doesn’t help. For example my stupid sister – in – laws refuse to let me use it in their huge homes because they say I can walk and they think it will scratch their precious floors, they have no idea how painful walking is for me (I have tried to explain this to them but they just don’t understand). Do you have anymore tips on accepting that I have to use the scooter? Keep up the good work, your posts have been very inspiring.
Kindest Regards,
Crystal
Thanks so much Crissy 😀 I’m sorry you’re having issues with your inlaws. Do you use other mobility aids? maybe use a stick/crutch/manual wheelchair in their houses until they get used to the idea of you needing one? it’s difficult for people to understand how hard it is when you’re dealing with variable conditions and invisible ones like pain. Maybe see them outside the house so they can see how much better you are when you’re on wheels. I mjst admit I tend to walk in peoples houses (not just because they aren’t accessible) its easier for everyone and I am capable of walking, its good exercise lol. It might be worth talking to them about just how hard you find walking. Communication is key 😀 also try to see it from their point of view, they know you can walk and they are worried about damaging their homes, make sure you’re clear about your needs but also make sure you’re listening to theirs 😀 Xx
Some scooters/wheelchairs have the option of covers to protect houses from dirt and markings. I have a manual WC and I can say that they can scuff the walls more easily than the floors. So far I’ve never had an issue with floors.
Such a great post! Thank you!! 🙂
I have just very recently gotten crutches (though I’m using only one – like a walking stick but more stable). I was really surprised at what a difference it makes and how much more I want to go out and about rather than it seeming like a daunting, insurmountable mountain that will make me feel poorly and ouchy.
I am finding it quite liberating.
I feel a new open door of possibilities – little things I had given up on. I can’t believe (in hindsight) how much I was making myself struggle, until I gave myself permission to try out a stick. My philosophy now is that if it helps me to get on and out and about and do more and be more active and engaged with life, then it’s a good thing.
I am a newbie and learning the complexities of managing handbags and leaning down to pick things up!!!
I have had the question of ‘But do you really *need* it?’ which is something I find tricky to answer. I can walk without it – technically. But I didn’t go out much, even when I very much want to, because of the difficulties (partly joints, partly balance and staying upright without feeling sicky) so I am correcting my own thinking to “Yes I need it – if I want to live a fulfilling life and get on with things without making myself feel so ill that I do nothing for the rest of the week.’
Thank for your comments and I’m glad you liked my post 😀 I couldn’t believe the difference one crutch made either! I was also struggling unnecessarily but the had the “do I need it” moments. Think about it this way, do people need to wear shoes to walk? Technically no but wearing them makes walking easier, less painful and less risky 😉
The handbag thing is much easier with one crutch but it’s still a pain! I found handbags with a strap across my chest easiest to get too 😀
I’m so glad you’re enjoying life again!
X
Your post is brillianty logical, and may help to dispel a few misunderstandings.
I use two Nordic poles, and find them much more stable than one stick. If I do fall, the two poles make it easier to get up again. I can see that crutches might help me with the pain of my crushed spine.
If I need a handbag, it has to go over my head and one arm, and is pushed round to the back, but mostly I have a tiny pouch containing phone and angina spray, which I wear round my neck and tucked into my jacket. Travelling is my main bugbear, but I have found airport special assistance to be superb. Trains are much more difficult and stations are far from user-friendly. Nowhere to sit down, and I end up sitting on the dirty ground leaning against an advertising board.
Thank you so much for you comments 🙂 I also use a handbag that goes across my body. I’ve had mixed experiences with airports but mainly positive 🙂 and I agree trains aren’t very accessible on the whole!
I’ve found myself sat on the floor on numerous occasions. Indoors it doesn’t bother me but outside isn’t very nice is it.
Thanks again for taking the time to comment and all the best.
Thanks for this, it’s absolutely spot on!!
I have people in my life who don’t understand my ‘choice’ to use mobility aids and this explains it beautifully.
I’m so glad you like it! Thank you for you lovely comment!
Thank you for putting my thoughts and worry’s into words. I struggled with a walking stick for 2 years just to avoid the comments from others.
Now I am using crutches, a scooter and have been referred to wheelchair services, my pain is more controllable and I have started living again.
You have helped me get my head around it and given me the tools to deal with the bullies.
I’m so pleased I could help! And I’m really glad you’re living life again! All the best 😀 xx
Reblogged this on Grace's Musings and commented:
I haven’t posted in a long while. I’m not so well. I will write an update, but first I really wanted to share this post – succinct and accurate description of life both with and without mobility aids, the good and the bad of each.
Hey, this was shared in one of my Facebook groups. This is so well-written. I have EDS and PoTS and I’m at uni, using a scooter. I do get asked (nicely!!!) why I have a scooter when I can walk. I have no problem people asking (far better for people to ask than to assume) and I just tend to say that I dislocate really easily. Your description of standing up to get a coffee is perfect. Shared on my timeline, thank you 🙂
Thank you for your kind comments! I can’t believe how popular this post has been so far! 😀 I’m also at uni studying Occupational Therapy, what are you studying? Thanks for sharing my post!
This is perfect! The description of getting drinks on crutches could have been written by me, although I am direct now so I order and say “Can I have it brought over please” (in that way that says this is an order not a request). I’ve only once had it questioned and I was with a friend who has spina bifida, the manager served us and asked permission from her staff… Not sure which one of us she was expecting to carry. I also tell cashiers that I have short arms and they need to put the money in my hand. I’m not putting myself out for able bodied people if I can help it – bad enough being refused a seat on the bus! Sadly I get a lot of people thanking me for pressing the access button on doors and end up standing there pressing it a couple of times before I’m allowed through. I don’t find people are necessarily helpful to people on crutches.
I could list off loads of stories here but I’d be going on for a long time.
I really think you should share this to George Takei after his ableist post earlier in the year and the subsequent comments from him.
Thank you so much for your comments! It’s definitely an ongoing battle against the world but I am seeing an improvement, more people are aware of invisible disabilties than there were a few years ago! I guess that means our hard work is paying off!
I really like the short arms idea I think I’ll give that a go!
X
Thank you for this post! It was great to read about your experiences, as well as both the positives & negatives of using each of the aids. When I used a wheelchair to go shopping after my hip sublaxes I was very nervous about peoples perceptions if I were to get out of the chair to reach something. As a result I struggled as I tried to stretch to get things off the shelves. I ended up asking for help but it took me ages to get someone’s attention!
When you began using your aids, how did it come about? Was it something a physio or Dr suggested for you or did you have to ask for things/research & purchase yourself? Xx
Tania | whentaniatalks.blogspot.co.uk
I had crutches from A&E for injuries and realised they helped with my other joint pain, after struggling with hip subluxations for a few months I baught myself some ergonomic grip crutches and used them out and about for a while. I managed while with crutches and braces. When I decided to go back to uni I realised I wasn’t to cope. I went to my GP who didn’t argue at all and I saw wheelchair services who leant me a heavy bog standard chair to try. Despite it hardly be a quality chair it made my life so much easier! I went back a year later for my first custom fit chair, a quickie life. Another year later I got my current chair a Quickie Helium 😀 xx
Thanks Jo! Xx