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.

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.

A quick trip away with Chronic Illness...My 21st Birthday!

image - quote-pictures via Google Images

As those of us with chronic illness will fully understand, no matter where you go, your illness will follow you. Whether that be your physical pain, depression or anxiety. It never slides, its a heavy weight to carry but it also can't stop you from achieving the things you really want to in life. Accepting that where you go these things follow you, is often very daunting and scary as there is no off switch. When you have a chronic illness, it feels like it robs you of typically normal and consistent things in your life. As well as celebrations. Time stops for no one yet those with chronic illness end up missing out on a hell of a lot.

With March 1st fast approaching after a rough January, I seemed to be in a huge rut regarding my forthcoming birthday, my 21st birthday to be precise. Ever since the age of 13, I had spent every birthday ill in bed, crying in pain and just wanting the day to be over. It never felt like a birthday, despite my family's best efforts. It just felt like another day in huge amounts of pain, where I still felt miserable and ridiculously unwell and disabled. My birthday just seemed to become an anniversary of intense pain in my life with lack of progression or celebration rather than a day that is solely dedicated to the day you were born, the days you have lived on this earth and who you have become as a person throughout this time as you turn a year older.

With loss of friendships, being able to do things with a group of friends was off the cards. As I always say, keeping friends when you have a chronic illness is hard as you are unable to spend huge amounts of time with them. When it comes to doing things together, being able to do something suitable to your own needs but suitable & exciting to people of similar age who are not disabled is even tougher. You tend to be more limited with the activities you can physically join in with and it can sometimes minimise your friendships.

This was when I just knew I couldn't let a birthday such as my 21st be the same as all the years before. I didn't want a fuss, I just wanted a distraction that would help to 'forget' my pain for a minute or two. Social Media is a place full of what others a doing for this occasion and with no input from a fellow disabled person as an example, I felt at a loss. I was racking my brains, as well as my friend Lauren's trying to think of things I felt I could manage. My goal was to replace the near decade of miserable, painful birthdays with an amazing memorable trip that would counteract the birthday I had craved for so long. My fear was that this wouldn't be the case because of my illnesses and disability. Alas, after excessive researching and a lot of self convincing, the idea of disabled friendly (highly important) Disneyland Paris was born.

I knew before I left just how difficult it would be, however knowing that I had always dreamed of a memorable birthday like the one I was planning to have seemed to calm me inside. Hoping and being optimistic that even if I couldn't manage much, that it would still be extremely worthwhile and enjoyable because I wouldn't be stuck in the place I am 24/7, home. I'm sure thinking this way actually made the trip seem more achievable too, despite my families worries. Any other person of this age doesn't have to think twice about a spontaneous getaway. Unlike those who are chronically ill, they need carers, someone to help them during travel, someone to push their wheelchairs but most importantly someone who doesn't mind this responsibility for more than a few hours. It's a tough responsibility to ask of someone. Occasions like this often seem less like a short getaway and become more of a working carers trip.

It's a lot to ask of a person and I often shy away from this through embarrassment and not wanting to bundle my problems on someone else. So rather than asking a friend to come with me, I asked mum to join me. Not only is my Mum my best friend, she also helps me without even being asked. I love that we know have fond memories of our trip together that only we share. I know my two best friends (who are not ill) would do anything to help, however I still would feel wrong asking of them to do this. Although, I have researched into how to make any future trips slightly easier and am open to options such as electric scooters to take some of the 'carer responsibility' away if I return. When it comes to trips with friends, my fear lies in the unpredictability of planning something with them yet being too ill to participate and the repercussions of them also missing out that I often over think and feel terribly guilty about. Plans may often need to be adapted at the last minute and pain levels may interfere. In the past, I would have tried to coat my disability and appear to normal, agreed to do what was easiest for everyone and majorly suffer physically with the consequences.

Now, I cant even hide how disabled I feel and have become and realise how foolish it is to put my body under such unnecessary strain. Even standing for a few seconds can make my body feel like I've run a marathon. My ability to walk for longer than a minute without pain has increased drastically too meaning that now my wheelchair must come everywhere. In my mind, I wish to be fully independent and don't like having to ask for help. However my body, screams for help. I feel so physically disabled as of late, that I would be lost and frightened without the help of others that have a good understanding of my illness and it's unpredictability. I just passionately dislike asking for it or the fact that I need it.

It's through having memories in life that make illness a little easier to deal with. There is so much socially those with illness miss out on over the years. Those who become ill in adult life usually have a positive outlook on a life that has been filled with wonderful memories and achieved goals. Those who become ill as a child or during their teenage years like myself, unfortunately can't be apart of making many memories and therefore don't have an escape to recall upon in desperate times. Memories and dreams often take a longer time to attain and achieve, which is why if you really want to do something despite all of your pain, just go for it. I've known for years I wanted to be out of the house for my big birthday and I'm so glad that I pushed myself to do so and booked a last minute trip.

Yes the trip was challenging, exhausting and seemed daunting and unachievable beforehand. But was it worth it despite all of the obstacles that occur in daily life with illness ? 

ABSOLUTELY 

It was also incredibly exciting, relaxed (who would've thought) and fulfilling. I really felt like for the first time in years, I had achieved something. From start to finish, such as booking/organising every aspect of the entire trip to actually physically managing to participate over the course of a few days. I could burst with how much I enjoyed my time in Disneyland Paris as well as what I managed to achieve despite all of the pain I was experiencing.

 

Disneyland has given me an amazing, happy and joyful birthday memory as well as being the best 21st celebration I could've envisioned for myself when I was younger, illness existing or not.
I will look back on the last few days with extremely fond memories as well as realising that if I think positively, I will be able to achieve the things I truly set my mind too.



* I will be uploading an in depth review on my own experience of being disabled in Disneyland Paris. It's a destination that a lot of people have concern or worries over when disabled and this topic was something I found useful to research myself.