Sunday, 15 March 2015

Using A Wheelchair - age, confidence & more....

image: lovethispic via google images

It's hard for myself to believe, that from the age of 17 I have been wheelchair dependant. It's an aid that is meant to make life easier for those of us who are told by doctors for the sake of our disability to be using one, but with this comes so many emotions and worries. Again with the majority of aspects in chronic illness, there's a lot of reflective thoughts such as:

"Why me? Why can't I have the same physical tolerance levels as others? Why can't I be like the rest of my friends? Why do I need this wheelchair so badly?"

These questions don't have direct answers, more so answers we wish to hear to ease our pain in the reality of the situation, yet they won't physically change the attributes or the true reality of our everyday lives living and adapting with disability. If anything, they hinder our growth in acceptance of the process.

Although some may assume incorrectly that the issue must be with your legs when you are dependent on a wheelchair, consciously you need to remember that this is the misconception of wheelchair users. Yes, some people are in wheelchairs because they are severely disabled in many different forms. However, others using wheelchairs don't have to be in one because they are paralysed. They can be in wheelchairs because they can't walk distances, long or short, because they faint, because they are too weak for their body to carry them, because they dislocate, because their bones or muscles are fragile, because they have chronic fatigue forcing them into a zombie type state where it's more than difficult to function. There are seriously so many reasons for a person to be in a wheelchair other than what is drilled into us from a young age to deem correct.

When you become chronically ill and a wheelchair comes into the equation it is very hard to get your head around. How you can go from being able to walk your dog a short distance to becoming bedridden and unable to leave the house without this very obvious and physical object all of a sudden. Especially when growing up you only assume that elderly people should be using wheelchairs. It's something I was hugely embarrassed over and couldn't comprehend for many years. I didn't know of a single person who used a wheelchair, let alone a young person. It's something that not a lot of people surrounding you will go through at a young age so it is an abnormal situation to find yourself in. I was incredibly dismissive of my aid at first, I did not want to look at it, think about it and especially sit in it.

Wheelchairs don't always phase people in illness, possibly because some can accept the fact they need one pretty fast and won't let it stop them from doing or achieving what they want, which is fantastic. However, for me I always disliked the thought of giving someone a reason to stare. I hate the attention you receive when in one, I hate to be pitied and looked at, I hate the stares you can receive or puzzled faces as you are wheeled past others. I imagine what others may be thinking, young people especially being my concern. It's horrible to feel so obviously different to others your age. Do they see me as weaker than them? It's a situation I don't really know how to accept or adjust too. Only you will understand how drastically your disability affects your daily life, yet a wheelchair makes it more than obvious to strangers, let alone close family or friends who may know of your health issues.

 I often have an overwhelming fear of being seen out in my wheelchair. On one hand, I know how desperately I need it. I want people who I am close too to clearly understand I am not quite able to keep up with their level of abilities but on the other hand it brings me such a feeling of vulnerability. What is strange is that for the majority of the time, I have no problems mentioning I am in a wheelchair to whomever it may be. It's not something I feel ashamed to say, but it's something I feel self conscious of being in and using. Especially local use of a wheelchair. I think this is something to do with seeing people I 'know of', it gives me a great deal of anxiety so I like to protect myself and my vulnerability. My mum often says that it shouldn't make a difference if I was to see someone I know, because if they was a friend they'd know that I was already using a wheelchair and therefore I shouldn't worry if they had an opinion on the situation because they are not a part of my life. Like most, I have always been told that the older you get the less you worry about what others think of you. I'm not quite there in the slightest but you do grow as a person slowly but surely and only time will tell.

In the past I was making outings worse for myself because I was struggling a great deal to keep up with healthy beings, yet I was just so anxious over seeing someone I knew whilst being in my chair, so I would wrongly convince myself I could actually walk and stand for prolonged lengths of time and instead suffer the major consequences. With my illnesses (Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) standing, being upright/on your feet and walking on weak joints, muscles and tissue is not helpful to the body with the symptoms that arise. It causes more damage in the long run to be walking around on our limbs that just are not strong enough to cope with this kind of strenuous physical activity that so many take for granted. We all need to remind ourselves in moments of doubt that our wheelchairs or our scooters are an essential aid for us to get around because our bodies are too weak. I personally saw my wheelchair as something to make me ashamed rather than embracing and accepting the fact that it could help me.

A wheelchair is actually for your own safety. People are less likely to knock into you or cause damage to your already fragile body. In my illness; I dislocate without any warning. I also pass out when blood pools in my legs, therefore not making its way to my heart and pumping overtime in order to reach there. Wheelchairs can lengthen the time you manage to be out, they do not in the slightest ease the pain you may already be in but they can help to preserve your energy. There have been times in the past where I have been out and after 5 minutes I am exhausted or feel faint and have had to resort to sitting on the floor because of lack of chairs around. It sometimes takes a scary experience to realise that it's more than beneficial to be in something that is causing you great fear.

 Obviously the reason most of us are housebound is due to high levels of pain so sometimes we are unable to leave the house full stop. However of course l would like the confidence to be able to get out more in my chair. On days where I feel up to pushing myself, I would like to not be embarrassed to use my wheelchair. Although, I will say that the worse my pain and disability becomes the more accepting I become of my wheelchair because I know it really is truly necessary. I know that I can not physically stand a walk a distance greater than a couple of metres without an aid.

I've since stated taking baby steps. The more I go in it, the more my confidence grows and I become more at ease with the process and I really hope this evolves positively over time. Although the amount I physically am able to leave the house is minimal, when I do the wheelchair is now always the option. I now have taken my wheelchair to 5 concerts over the last year. Considering I would not even have the confidence to use it in England because I was embarrassed, I seem to somehow dig deep, find some confidence I didn't think was there and sit in it with thanks to those around me telling me to not be frightened to use it. I do notice it preserves some energy, it doesn't stop the pain, in fact it can sometimes be quite uncomfortable but I do understand that it is necessary. I also take it to hospital appointments as the building is usually huge and far too long a walk. Other than that friends visit me at home so what I do manage is catered to my disability.

There shouldn't be a stigma to young people in wheelchairs or at least so many of us feel like there is. Being young and using a wheelchair, although something that may not seem as largely common is also a necessity in your quality of life when you have a chronic illness. Confidence will always come into play for those of us who lack in this area, but try to keep perspective. A wheelchair is a tool to get you out more and help improve your quality of life. Don't make the mistake I made by being frightened for so long and putting off using your wheelchair through worrying of others opinions. Will you see those people again, probably not. It's a huge achievement to use your wheelchair when you feel like you don't have the confidence and how anxious it may make you feel. There is nothing to make the situation any easier to accept other than the fact that you NEED the wheelchair, for your own safety, it's a necessity despite how stubborn or against it you may feel.



So here comes a challenge!

 I challenge those of you who have a wheelchair but are too frightened to use it in public, to use it when you next manage a trip out. Rather than think of the negative thoughts the wheelchair may arise, instead focus on the positives e.g energy/fatigue levels. For those who use a chair frequently but tend to look at the floor (I'm talking to myself here too), see how many times you look up when going past groups of people young or old in your chair.




31 comments:

  1. This is a really insightful post, I can't begin to imagine how hard it would be having to use a wheelchair.

    I'm glad I've stumbled upon your blog.

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    1. Thank you for your lovely comment and for taking the time to read my post:)

      Nancy x

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  3. Really liked your article. Greeting from a DJ from Czech Republic, who happen just to need a wheelchair soon too.

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    1. Hi Hana. Thank you for your comment and for taking the time to read my post.
      Sorry to hear you will also be needing a wheelchair soon. I hope that you will remember some of what's written above when the time comes for you to use yours. Keep smiling :)

      Nancy x

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  4. I dont use a wheelchair but have been letting my walking stick collect dust until recently. On Monday I took it to work, huge step! Still terrified to take it again, but I did it! On the way an old man shoved me out of his way (I'm 28)and a woman leapt out of her seat on the bus saying she was getting off. She was still on the bus when I got to work. Turns out my pink flowrry stick is scary for others too, who knew?!

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    1. Hi Karen, I just read your post about your walking stick. I'm glad you managed to push some of your fear aside in order you use your walking stick on your trip out. That's an amazing step! Shows how different people accept and act towards disability with the opposite reactions you received. I've had old people shove into me before when I was out of my chair and it gave me a wake up call! Hope you manage many more trips out with your stick soon :)
      Thank you for reading my post
      Nancy x

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  5. Hello there.. stumbled on your profile on Twitter, and then from there your lovely blog!
    This is a very perceptive post, and I can totally relate. I'm in my early 50s and lived a very active life until two years ago, when I suddenly got ME. Within a year I needed wheels to get out - starting with a wheelchair to be able to watch my daughter compete at Crufts dogshow.

    I made a positive decision that I would look up, smile and look folk in the eye - this as much for my family's sake as my own. I knew it would be hard for them to cope and this seemed to be the best way for me to help them.

    I now use scooters to get about. I have a folding one, and a rugged one for outside. I wouldn't be without them.... but still, even now, I know there are days when it is hard work to go "out there" and be seen.

    I find it most especially difficult when meeting folk that I haven't seen for a while, because their shock and pity is so tangible. Amongst those who seem me on a scooter all the time, I have no problems.

    Anyway just to say I loved your post here, and I'll add you to my follow list. xx

    PS I blog here: http://sallyjustme. blogspot.co.uk/

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    1. Oopps - should read THREE years ago when I got ME ;)

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    2. Hi Sally, thank you for your lovely comment.

      I'm sorry to hear your health hasn't been great over the last few years, it's a very hard and sudden adjustment. I'm glad that you still managed to get out to watch your daughter compete at crufts (amazing by the way!)
      Thank you for sharing the ways in which you cope when out in your chair, I never thought of the effects it may possible have on family members too when we go out. Possibly when they see we are embarrassed by it, it makes them also feel awkward so I will definitely keep that in mind next time. I had an electric scooter on holiday last year and loved the freedom I had with it so I'm glad you manage to get out with yours!

      I will be checking out your blog now, thank you for also sharing a couple of my posts on your google+ . I really appreciate it.

      Wishing you well,
      Nancy x

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  6. :) I've just found your blog through a facebook link on the EDS page. Really like your posts and like yourself i've had a lot of health problems. I'm 23 now and only just getting referred to a specialist to see if I have Ehlers Danlos, I also have bad IBS and fibromyalgia. There needs to be way more blogs like this showing people dealing with things with inspiring positivity, because at the end of the day no matter what hand you get dealt, you can't let ill health bring you down :)

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    1. Hi there,
      Thank you so much for taking the time to read my posts, I really appreciate it.
      I hope that you manage to get a diagnosis soon for your health issues and I wish you well on your journey, hospital appointments and waiting for a diagnosis are never easy.

      That's such a lovely thing to say, you've made my day, thank you.
      You are very right there, there's no changing the physical reality of pain and we can't let it take away our happiness too.

      Nancy :) x

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  7. Thank you, you e really given my confidence a kick up the backside, and I will hold my head up next time I have to use my chair xxx

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    1. Hi Jane, thank you for taking the time to read and comment on my post.
      That's very kind of you, but you made that decision all by yourself and should give yourself credit for the way in which you deal with being in your chair from this day forward. I hope your confidence continues to grow. Keep going :)
      Wishing you well
      Nancy x

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  8. Hi Nancy and thanks for posting. I'm an older EDS sufferer, having found out a few years ago what's "wrong" with me and then the light came on when I realised all of my struggles from early teens onwards can be directly linked to this frustrating condition. It was around a year ago when I finally came to accept I am disabled, and started using crutches. They've been a massive help and much as I was really self conscious to start with, after a while and fielding the inevitable "Oh no, what have you done?!" questions, I'm not bothered. I've since been gifted a pair of purple Ossenbergs, they're brilliant! In the past few weeks I've found myself almost grieving for the life I used to have, where I could go out walking and not have to sit down exhausted after 5 minutes... you know what I mean. So now I'm considering use of a wheelchair and actually, I'm feeling like this is going to be a positive experience rather than a negative one! I was dreading a family trip to a zoo soon because now my smaller person is out of her pushchair/my walking aid, I'm struggling. But a wheelchair...that will open up all manner of possibilities I thought had gone from me! So thank you Nancy, you've inspired me :)

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    1. Hi there, thank you for taking the time to read my post.

      I'm sorry to hear your health hasn't been very good, unfortunately everything makes sense after diagnosis and you wonder how you ever managed before after being given the diagnosis of "disabled". I'm glad you find your crutches help you and you have finally accepted your Ehlers danlos. I'm sure this wasn't easy. Thank you for sharing how this process also made you feel, I'm glad that slowly but surely you have managed to push these feelings aside.

      I totally understand what you mean by that, chronic illness is a real grieving process, never feel ashamed by those feelings either. I'm glad you are considering a wheelchair, you never know, you might like it more than the crutches. I wish you lots of luck in your journey with eds. Thank you for your lovely comment :)
      Nancy x

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  9. Hi Nancy,
    Like you I have EDS, POTS and use a wheelchair. So I read this post, and several others with great interest. I’m a touch older than you :) so I’ve been using a wheelchair regularly for over a decade. I still feel self conscious in it sometimes, but it has got easier over time.

    It’s great you’ve gained confidence using your wheelchair. I hope you continue to get out more and go to concerts. And keep up the great blog. All your posts are well written and insightful. I’ll be following from now on.

    I also have a blog about living with EDS & POTS which you might be interested to glance at sometime www.reluctantcontortionist.co.uk - I’ll list your blog on my ‘Links’ page if you don’t mind?

    Best wishes, Ceri.

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  10. Hey I just found this article and I found it tremendously helpful! I have Ehler Danlos and have just started using my wheelchair more. I was limiting myself and avoiding certain activities just to avoid it, and it seems so silly now looking back on it. I am also encouraged by how beautiful you are! I am a girl in my twenties and when I try to look for wheelchair or cane advice it is almost always from an older individual. I noticed there are a couple of grammar errors in here (I'm sure this was a journal entry anyway), and if you ever are interested in publishing a more formal article to share on facebook, I'd be more than happy to edit for you. I graduated cum laude with an English Lit degree and I would love to put it to use more often. If you are at all interested email me at derridaslut@gmail.com -Phyl

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  11. Hi,

    It was an inspiring article. I commend this product www.portashopper.com.au which is very helpful for impaired people to gain confidence.

    Thank you.

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  12. I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.
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    ReplyDelete
  13. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Wheelchair Lightweight

    Keep Posting:)

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  14. This is easier and surely gives comfort to internet users. Thanks for sharing. Post like this offers great benefit. Thank you!
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  15. Beautifully written, thank you for sharing the fear of using a wheelchair. I know it will provide comfort to others in a similar situation. I grew up with an adult cousin in a wheelchair. She is unable to walk at all due to spina bifida so I grew up thinking that wheelchairs were for those unable to walk. It's only in the past five years or so that this perception has changed. I don't think it's something I've given much thought to until my my own pain increased dramatically & I started the long process of getting my EDS diagnosis. I feel quite excited about my upcoming wheelchair services appointment, as being housebound has hit me hard. It's a very personal thing though & I will definitely have to have a pre-prepared reply for those I know & don't know who ask me about it, otherwise I'll panic & get stressed out. Xx

    Tania | http://whentaniatalks.com

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  17. On the off chance that you have a harm or a wellbeing issue that confines your versatility, you can accomplish the autonomy you fancy with a wheelchair that is simply ideal for you. Wheelchairs are built for individuals of each size, shape, and age, and have highlights intended to meet the numerous different interests of clients and proper for the different levels of help required.

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  18. I'm in awe at how beautiful you write. Thank you for sharing :)

    Dan
    Silver Cross

    ReplyDelete
  19. Hi,
    I have just read this post and it has provided me with inspiration. I recently slipped on my front porch and have had partial paralysis ever since. I am able to stand for short periods of time but I'm very unstable. I have had to purchase a wheelchair for my safety and to stop my condition worsening. People around me don't understand, they think the only people that need wheelchairs are people who have a spinal cord injury and that I should just "get over it and get up and walk", this was told to me recently by my step sisters. I am ashamed to be using a wheelchair, it's as if I'm lying to myself because I have the ability to stand, even though it's only for a short amount of time. This has been a massive shock to me, I don't want to believe it. Should I be feeling like this? I don't know.
    Sarah.

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  20. I was diagnosed with Complex Regional Pain Syndrome almost a year back and I am becoming more and more dependent on my wheelchair and being only 22 and having this sudden change is hard. I am beyond furious, confused, scared and just plain exhausted with it all. I know I need my wheelchair but it is so hard to be stared at and given sad expressions. I have always been looked at for being different emotionally and somewhat physically because of my mild Cerebral Palsy, but with this it is even more and I feel like I am drowning.

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  21. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    karma rainbow 6

    Keep Posting:)

    ReplyDelete
  22. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    karma rainbow 2

    Keep Posting:)

    ReplyDelete