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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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!