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Mobility Aids: Signpost For Something Is Wrong
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Mobility Aid: Signpost For Something Is Wrong

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Before leaving the house and my coat and bag, I also grab my crutch with some apprehension. A crutch that has become like an ally. One that helps me keep my balance and keep me upright when my legs threaten to give out. And when symptoms are at their worst, and everything feels like a battle, this crutch has become my weapon. But unlike a superhero, it is a weapon not for fighting villains and saving the world. No, it is a mobility aid that enables me to function in the outside world.

"When symptoms are severe, everything feels like a battle; this crutch has become my weapon. But unlike a superhero, it is a weapon not for fighting villains. Instead, it is an aid that enables me to function in the outside world." Share on X

But the truth is that I felt and sometimes still feel embarrassed and insecure about needing and using a crutch. Unlike superheroes whose props make them appear strong and powerful, my prop, however, makes me appear sick and weak. My need for such an aid makes me feel ashamed, embarrassed and insecure. The sight of it made me feel scared about my body and my future. And using it often makes me feel vulnerable.

"But unlike superheroes whose objects make them appear strong and powerful, my crutch, however, makes me appear sick and weak. And my need for such an aid makes me feel ashamed, embarrassed and insecure." Share on X

Using it makes me yearn for the years when my illness remained invisible. I miss being able to look in a mirror and forget I was sick, even just for a second. And I especially miss being able to venture out in the world, disguising myself as being like everyone else.

Using the crutch, however, shatters such an illusion. Suddenly, I saw my crutch as a huge signpost for everyone around me that something was wrong with me. It was now suddenly visible that I was sick. A sign my body is no longer working the way it once was. So I consider it a symbol of my impairment: a very visible one. But one which I desperately want to remain hidden. 

"Suddenly, I saw my crutch as a huge signpost for everyone around me that something was wrong with me. It was now suddenly visible that I was sick. A sign my body is no longer working the way it once was." Share on X

Using A Crutch Made People Notice Me; But Not In A Way I Want To Be Noticed

I was worried that by using it, people would pity me or ask me personal questions. Worried that some people would see the crutch, and only the crutch and not the person behind it.

I was also afraid that a crutch would make me look unfashionable. Accessorising my outfits with jewellery or a scarf, for example, is something I enjoy, but this was one accessory that I didn’t like or want. Instead, I saw it as something that made me stand out, look different from everyone else. Just not how I would like others to notice me.

"Accessorising my outfits is something I enjoy, but this was one accessory that I didn't want. Instead, I saw it as something that made me stand out. Just not how I would like others to notice me." Share on X

Suddenly the girl staring back at me is no longer recognisable from the one before. No longer is my own body represented in the images shown in glossy magazines, on television or even on film. There are no stylish role models providing examples of how to make a crutch look cool. The lack of representation of mobility aids in the media only adds to my feelings of being different. And also a sense of uncertainty of where and if I belonged.

Looking through my photographs, I notice that not many include me with my crutch.  Whenever, I see a camera my first instinct is to hide it, hide the evidence of my sickness and disability.
"There are no role models providing examples of how to make a crutch look cool. The lack of representation in the media only adds to my feelings of being different. And also a sense of uncertainty of where and if I belonged." Share on X

When we see people using mobility aids in the media, it is usually of older people. However, needing and using one myself often makes me feel old before my time. And I often worry about the judgements of others; people assuming that I’m too young to be needing one, and therefore must be faking. Feeling the constant stares and scrutiny when out only seem to confirm such fears.

Mobility Aid: Disability on Display

I am hyper-aware of the people around me. I can feel people’s gazes on me as they look me up and down as if trying to identify my affliction. Just recently, as I sat waiting for a pedicure at a local salon, I noticed a woman staring at me. It made me feel like I and my disability were on display for everyone to see and scrutinise. Sometimes people even approach me asking, “Oh no, your poor thing, what happened to you?” It’s as if people believe that I am using the crutch due to an injury, expecting a funny anecdote on how it happened. But instead, the need for such an item is because of a long-standing neurological condition and one that requires other mobility aids than just my crutch.

"I feel people's gazes on me as they look me up and down as if trying to identify my affliction. It often makes me feel like I and my disability were on display for everyone to see and scrutinise." Share on X

I have not yet found a way to reply to such a question without making others feel awkward. When I reply and tell them the truth regarding my neurological condition, there is a deathly silence, not knowing how to respond. And I feel uncomfortable, as there are times when I don’t want to share details about my disability. Sometimes, I want to forget that it exists, even if my symptoms never let me forget it.

For somebody who was more non-disabled than I am now, introducing a crutch represented losing something that I once took for granted. I had to accept that I could no longer move as freely as I once did. I could no longer rely on my body to keep me safe and free from falls or from the evidence they leave behind. Every new bruise or cut is a stark reminder of the deterioration of both my mobility and balance.

"Introducing a crutch represented losing something that I once took for granted. I had to accept that I could no longer move as freely as I once did. I could no longer rely on my body to keep me safe and free from falls." Share on X

Such deteriorations feel like a personal failure like I haven’t tried hard enough to get better. And my newfound dependence on a crutch, so too, felt like a personal failure. I thought that a future of using a mobility aid permanently was giving in to my condition and giving up. It felt that I was saying goodbye to the person I once was and the life I lead and opening the door to something new and unsettling.

A Newfound Dependence on A Mobility Aid: A Personal Failure?

Society perpetuates the idea that a strong and healthy body is the ideal. And as a result, disability and illness are seen as weakness, as something lesser than. My embarrassment and insecurity of needing and using a mobility aid that identifies me as such is undoubtedly evidence of my internalised ableism. I internalised everything society has taught me and thought that using a crutch and other mobility aids made me weak.

"My embarrassment and insecurity of needing and using a mobility aid that identifies me as such is undoubtedly evidence of my internalised ableism. I thought that using a crutch and other mobility aids made me weak." Share on X

What My Crutch Has Given Me

What I don’t often consider, however, is the positives that using mobility aids have brought into my life. For example, my crutch has meant that I no longer have to rely on the support of another person to help keep my balance. My crutch gives me much more stability, allowing me to help maintain my balance and stopping me from toppling over.

Using a crutch might make me insecure at times, but using it has made going out much less of a hassle and without the worry of falling over or losing my balance. Image by Karolina Grabowska from Pixabay.

It has saved me the red-faced embarrassment of being left face down on the ground plenty of times by now. When your disability is invisible, people constantly question your need for things such as use for an accessible toilet or a blue badge, for example. Mobility aids, however, often serve as a shorthand for being disabled, and how that there is something wrong and my need for assistance is therefore legitimate. It sometimes feels like a huge weight has lifted when I no longer have to prove my disability and illness.

"Mobility aids, however, often serve as a shorthand for being disabled, and how that there is something wrong and my need for assistance is therefore legitimate. No longer have to prove my disability and illness." Share on X

Overall, though, my crutch has gone from something that brought me shame and uncertainty to something that has enabled me to live more of a life than I did before. And by accepting and embracing my crutch, I am by extension accepting and embracing myself.

When I go out, the first thing I grab is my bright pink and very cool crutch. No hesitations.

Mobility Aids: Signpost For Something Is Wrong
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A life changed through illness…

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According to the Oxford English Dictionary; the definition of change as a verb is “make or become different.”   As a noun, change is defined as “an act or process through which something become different.”  In other words it is a transformation from one state to another.

Being diagnosed and living with chronic illness can be perfectly described by the word ‘change’ as our whole world is transformed from one of normality to one which includes numerous doctors and hospital visits as well as daily treatments.  But transforming from being healthy to one with a long-term chronic illness is not the only change that occurs when illness takes ahold of the patient.  Relationships, hobbies, like and dislikes as well as daily routines are all impacted by chronic illness and can change as a result.  Personalities can change also, from someone who was outgoing, bubbly and happy can change to someone who is quiet, reserved, and has a low mood as a result of being diagnosed with a long-term health condition.  Once, a person loves nothing but a night out with friends, but often when a chronic illness sets in then a night-in wearing comfortable pyjamas and watching TV seems like the idyll.   Illness changes every part of a patient’s life.

But how has it changed my life?  This is a great question, especially the long-term condition which I live with started during infancy.  In this instance the changes have been more subtle; slowly progressing but changes nonetheless.  Before my condition started progressing and becoming worse, I had no problems with walking, sure, my legs started feeling stiff and uncomfortable but other than that I could walk fine.  Then, the condition progressed, making my balance worse as well as worsening pain and weakness in my legs.  And as a result mobility accessories was another change that presented itself in my life – first was my cane, then the crutch and now I rely on a wheelchair when I go out.

Relationships in my life has also changed, once I was a dutiful daughter, happy to complete chores to help out around the house, now however, I am increasingly reliant on my parents for help  – help cleaning around the house as well as my bedroom, help making meals and sometimes even simpler tasks such as making a sandwich, as well as helping me get to the bathroom when my legs are really bad.  Often it feels as if our relationship has changed from that of parent and daughter to that of carer and patient.  Friendship has been a constant change too in my life; often than not, friends don’t seem to stay very long in my life, whether or not they get bored with me saying no to day or nights out because of illness.  Or perhaps they feel resentment for the need to pick me whenever we make plans because of my inability to drive due to my condition.

A lot of the friends I have met through the blog and Twitter who are also battling chronic illness has also talked about the change in their lives but I like to think that although there are a lot of negative changes that illness inflicts upon our lives it also has many positives, such finding each other through illness and finding connections between our lives because of it.  Through illness it has helped us make very real, supportive and life-long friendships that will long remain.  But also, living with a life-long chronic condition can also make us more understanding,  and emphatic towards others.  Illness does not mean the end but can change us into more beautiful and understanding human beings.  Perhaps this can best be summed up by the proverb:

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This post is for the October edition of the Patients for a Moment Blog Carnival which is being curated by Life with RA is a Pain.

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Sick to Chic!

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With all the falls that I have been experiencing lately, the crutch that I bought myself last year has taken quite a battering!  The crutch itself has dents, scratches – some of the damage that has been caused by the falls has even caused some cuts on myself.  Where the paintwork on the crutch has flaked, it has caused the paint to sharpen; and it is these sharpened points that has been causing cuts on my legs and feet when I have had falls in the house.

Also, the anatomical moulded right-handed designs have become uncomfortable, and where it has rubbed against my fingers, a callous has formed there!  So I thought that I would treat myself to a new crutch – one which would be more comfortable and not cut me!  I remembered reading online on a forum that I often visit, that one lady recommended an online store that sells crutches at a reasonable price.  And therefore I headed to Chic Aid Crutches to look at the range that they offered.

And what I found was impressive!  Chic Aid Crutches offers an impressive range of different crutches, including full cuff crutches, half cuff crutches, designer crutches and even folding ones!  And even more impressive is the wide range of colours that are available!  We have all seen the standard NHS crutches – they are heavy, uncomfortable and the grey colour just looks dull and boring.  Using them, feels depressing as they are just not fashionable!  Why should we be sick and be unfashionable with it?  Especially when we have the option to use a bright,  colourful and fashionable mobility aid which feels comfortable, lightweight and what’s more is fun!  It does not feel like a mobility aid but rather a fun fashion accessory!

After purchasing the crutch, the delivery time was fantastic – I only waited a day for it to arrive, and the crutch was also well-packaged and with no damage to the crutch whilst it was in transit.

Lately, I have really come to love the colour orange – its bright, fun and is a colour that instantly cheers me up.  It’s a reminder of a beautiful sunset.  And it’s because of this, I chose an orange colour for my new crutch.  A beautiful and cheerful colour that will look lovely during these Summer months.

My brand new crutch
My brand new crutch

 

And it has some great features – a padded foam covered handle – which is very comfortable to use and what is even more great is that it doesn’t rub against my finger.  The height can be adjusted in tow places – the height from the floor to the handle, and between the handle and the cuff.  This is great for me, being short!  It is also very lightweight and is quiet when it’s being used; great for when I am in the house and my Dad is in bed after working nights, as the NHS standard crutches can be noisy when being used.  Another fantastic feature and incredibly useful is the black Pivoflex ferrule, which provides increased stability with their ‘flex’ action – a feature that is great for me, due to my balance problems, and so a mobility that aid that provides increased stability really is a must-have feature.

I really love my new crutch and perhaps one day I will buy more from Chic Aid Crutches and look chic and fabulous whilst being sick!

Thank you Chic Aid Crutches!

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NHBPM Day Twenty-Two: Changes…

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It’s Day 22 of ‘National Health Blog Post Month’.  One of today’s prompt asks us to write about we are thankful for – as I have already done this in a recent post (Day 5: Giving Thanks!) I have decided to use the second prompt.  The second prompt asks us to write about change.

Well, my life at the moment are going through some changes.  The biggest change is that I am going out more, and to new places, thanks to my new personal assistant whom I was able to employ thanks to a grant provided by the local council through a scheme called ‘Direct Payments.’  When I am out with my Personal Assistant, I am not just visiting places that I need to go – but am also starting to visit new places, or places that I have not  been able to access for a long time.  And for the first time, I do not even have to rely on my parents to buy essentials for me, such as shampoos and conditioners, shower gel for me anymore – I can get them myself and even decide on the brand for myself!

                 

The house – outside and inside has also seen some changes this week.  A few weeks ago, I had a visit from a Community Occupational Therapist, to have a chat with me and to look around the house, and whether any adaptations could be recommended to make my life easier moving around the house, and of course, to prevent accidents.  For example, outside my house there are steps leading to the front door, steps which had no rails to hold onto – this for me, causes a real problem, as when I need to circumnavigate steps or stairs of any kind, I need something which I can hold onto, to prevent stumbles and falls, especially when the visual disturbances presents itself as I cannot always clearly see the steps to safely walk down.  Before now, i used to walk down a little grass banking at the side of the house to get to Dad’s car – the Community Occupational Therapist saw a potential danger with doing that – as if when in the case of heavy downfall (which happens a lot in Wales!) the grass will get slippery, and leads to the increase risk for a fall.  So, she referred me for some adaptations to be done to the house – such as external rails for the outside steps, an internal rail for the stairs (we already have one, but the OT thought a second one on the opposite wall would be beneficial) , and a drop-down rail for the bathroom.

 

              

These changes have now all been installed and ready for action – and are already been incredibly handy for me!

Another change that has happened for me lately is the move from using a crutch all the time when I am out and about to using a manual wheelchair.  The reason for this is the worsening of the weakness in the legs, which for me leaves me unable to stand or walk for long periods – obviously when I am with my Personal Assistant, this requires me to be out for pretty much the entire day (around 7 hours), and so need a wheelchair to be able to manage this.

This doesn’t come without its problems however.  One of my main symptoms, as you all know by now is the constant dizziness.  The dizziness, can still be really bad, even when sitting down; a symptom which really won’t go away.  And so the dizziness, is causing a real problem when I am using the wheelchair – being pushed and seeing everything whizz past, doesn’t do anything to help the constant movement that I already live with – and almost makes me feel really unsafe sitting in the chair.  Using the wheelchair going into shops is also a problem, as it causes the need to look up to see items – and tilting my head back to look up is one of my triggers – and can set the dizziness to high!!

 

 

 

I would love to hear others’ stories about being new to using a wheelchair and perhaps some tips to help me adjust to the new experience of using a wheelchair.  Any tips would be greatly appreciated!!

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NHBPM Day Nine: This Community Care Package? Yes, please!

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Welcome readers to another post for the National Health Blog Post Month with WEGO Health!  The prompt that I have chosen for today asks to describe the perfect care package for members of fellow patients.  This actually for my particular condition, with a neurological condition is actually extremely difficult as patients with neurological conditions can be likened to snowflakes – every one different from the next, each one unique.  Not every patient will experience the same set of symptoms, so in reality each patient will need an assessment by social services to really determine the support that they require to live a more independent life.  But, I will talk about my personal experiences with Community Care Packages and what has worked for me personally.

I was assessed by Social Services back in April, and was then allocated my own social worker (whom was now changed!).  I would recommend anyone with a disability to think about contacting their local Social Services and getting themselves a social worker, as personally mine has been extremely useful such as advising me ways in which I can become more independent and self-sufficient as well as helping me sort out problems such as those regarding benefits for example.  My social worker kindly wrote a letter supporting my application for such benefits and thankfully has seemed to work, as I had a letter on the weekend informing me that they have placed me in the Support Group, without needing to attend a medical!  This is the first time this has happened as I usually am denied such benefits after attending a medical, which I have had to appeal on a number of occasions.

The most helpful aspects of my Community Care Package are as follows:

  • Access to ‘LifeLine’: Due to many of the aspects of my condition – the constant, dizziness, episodes of vertigo as well as the weakness in my legs means that I am at risk at falls.  In fact, I am constantly at risk of falls, and often experience many throughout the day (especially on very bad days!).  And very often because of the weakness in my legs and arms, I am not always able to get up without assistance from another person.  Now, although I live with my parents, due to work commitments, they are not always at home.  So, this is where ‘LifeLine’ come in very handy, as it’s a medical alert service: It works by whenever I have a fall and cannot get up, or if I become very unwell, all I have to do is press a button which is on a chain worn around the neck.  The receiver will then connect through to a call centre, who will ask me what has happened and if I need assistance.  They will then contact one of the three emergency contacts that I provided to them; and if no one can be contacted they will then alert the emergency services.  As you can see , it can be a fantastic support system for those who are frail, the elderly or the disabled who are at risk of falls and accidents; it really gives a piece of mind, for not only patients but family members as well
  • As part of the Disability Team of my local Social Services, they have a Social Inclusion Officer; a designated social worker who is responsible for initiatives that support those who may be socially excluded from the wider community.  Those who, like myself have difficulties with being independent with going out and accessing local groups and amenities.  It was thanks to this initiative with my local council that I was able to find a group like ‘Life 4 Living’ and being able to get together with other people for a few hours.  Now, being the group’s secretary has really brought me out of my shell and given me confidence!  Initiatives like these really work and offer a fantastic lifeline for those who may be stuck in the house alone for long periods; giving the opportunity to not only have fun but also the opportunity to socialise
  • Access to mobility aids can be a real benefit for disabled people.  They can obviously be purchased, but often are very expensive, so as part of the perfect community care package would definitely be an access to various mobility aids that will help and support the individual patient to not only mobilise better but also be able to be more independent.  As part of my community care package, I was offered a perching stool so I am able to sit down so I can safely do some cooking independently.  I was also helped to apply for a wheelchair, which due to the weakness in my legs stops me from being able to go out for long periods of time.  Now, with the wheelchair I can go out without the worry of my legs collapsing from under me, and can even go out for longer! – bring on those long shopping trips and days out!!   Although, if it were up to me I would make these mobility aids more fashionable especially for people around my age – available in lots of different, bright colours such as pink!
  • Direct Payments: Also, as part of my Community Care Package, I was advised to pay for Direct Payments, which according to the Welsh Government:

This enables individuals to purchase the assistance or services that the local authority would otherwise have provided.  Direct payments support independent living by enabling individuals to make their own decisions and control their own lives.

Direct payments have gradually been extended to include:

  • older people;
  • carers;
  • parents of disabled children; and
  • disabled adults.

Thanks to the Direct Payments scheme, I have been able to employ a Personal Assistant, specifically to help me get out of the house and go shopping for items that I need, or for trips to places that I wish to visit.  This is a fantastic scheme, as it allows people like myself to lead a more independent lives and to be able to have help doing things that they wish they could do or go places but haven’t been able to because of individual circumstances.  Having a P.A. means that I can live more independently, go out more and be less dependent on my poor parents!

So they are aspects of my ideal Community Care Package for patients like myself.  Readers, what do you think of this package, are there services that I may have missed which could help patients like myself?  Please share any ideas or stories that you may have regarding Social Services and Community Care Packages!

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