You Say Equipment.. I Say Life!

Before I start.. Ask yourself this question.. 

If you needed it.. would you worry about others opinions?

Me, personally, I always worry about what others thoughts and opinions of me are. I want to fit in and belong. I don't want to be the odd one out, for the way I look or dress. My personality or my hobbies or interests. But let me tell you a little secret.. when I was younger.. teens and up.. I really didn't give two flying monkey butts. I enjoyed my hobbies, I loved my passions and I LOVED being different. I wore boys clothes, baggy jeans around my bum, I skateboarded with the lads. As I came out of my teens and into adulthood, my hair was cut and styled my way but always sticking to the darker tones or reds and browns and those plum type colours.. and now a full blown fully fledged adult.. my hair is bright coloured! My clothes are bright and colourful.. I love all my passions and hobbies and I don't care who knows. And.. I stick out. But my hair, my clothes and who I am aren't the main reasons I stick out. 

At the age of 33 I needed to start using mobility aids. Crutches and a toilet frame came first. 

Im now 36.. I'm disabled and relying on my mobility aids to live my life to the fullest.

But before you say here comes those violins.. let me stop you right there! Remember the question I asked at the beginning? 

My life didn't stop because I became disabled.. it temporarily went into hibernation because I didn't have the right supports around me.
My life found a new meaning because of all the mobility aids I finally got that I needed.. 

It took me a fair few years to not worry about others opinions. I'd notice the looks, the double glances, the kids pointing. The snide remarks from so called friends and family. And even the nervous comments from those who genuinely didn't know what to say or how to approach me.. But after I sat and explained, well to those who actually cared and wanted to know and understand.. they all took the same approach as me. 

If it's improving any part of my life for the better.. and please excuse my language but fuck all those who are negative and have nothing nice to say! Those negative attitudes aren't worth my mental health being impacted when I'm doing all I can to change and adapt so I can still live life to fullest. 

So let's talk about my mobility aids and medical devices. 

Let me just say this.. and I hope it brings a smile to your faces. Before I became disabled I used to collect handbags and footwear. I still do but not to the extent I did before.. My new favourite things to collect are Cool Crutches Walking Sticks hahaha! 

Like cmon, you Gota have a stick for every outfit or occasion.. just like shoes and bags! So far I have 2 sticks and 2 sets of crutches in 4 different designs. And I absolutely love them! 

And most people love looking through clothing and furniture catalogues.. not me! Hand me the newest mobility aid and care catalogues, a cuppa and somewhere comfy to sit and you will absolutely lose me! Haha.. Sorry not sorry.. this is the part of me I love. 

I won't lie, my confidence within myself may have disappeared and is slowly coming back, but one thing that has never been silenced is my voice and advocacy for those who need mobility aids and medical devices just to live a life that is somewhat "normal"! And I say normal like that for one simple reason.. What is normal? Define it! And before you say it's this, this and this.. you can not define normal. You can define the mean, median and mode.. but I tell you now.. there is no normal and we are all perfectly imperfect. 

Thanks to my mobility aids and medical devices.. I've gone from just existing in my home, hiding away.. 

To now living my life to the fullest possible!

Yes my mobility has and is constantly declining, and the need for wheels instead of sticks is becoming daily. But regardless of whether I have wheels or legs to get me around..

I will get around and I will live life the way I should.. and that's as brightly, happily and as fun as possible! 

It's not just mobility aids I need now.. I have to use certain medical devices too. My most important one being my heart monitor. I have two different heart issues, and with major heart issues and transplants running in my family.. keeping my heart checked daily is a massive thing for me. My heart issues are another reason why I use a powerchair and wheelchair. Although yes I can still walk, due to my heart and my mobility issues walking long distances isn't an option. My body physically can not handle it, and let's be truthful here, if you knew something was damaging you, would you do it or would you do anything to avoid damage at all costs..? 

I do have other things that you could call equipment as it's more physical exercise related for my physio to help with muscle and joint strength.. well actually whilst I'm being honest.. I'm trying to keep what strength I have left and if I can make it slightly stronger then sweet.. if it doesn't help with strength at least I'm still trying hey.. no matter how colourfully silly I look.. haha.. yes I'm laughing at myself don't worry.. If anyone remembers Alice from the vicar of dibley, it's one of those moments hahaha! 

On a serious note though.. this is where I want to ask another question.. or rather a do you know.. 

Do you know what ambulatory wheelchairs users are and do you know what dynamic disability is?

An ambulatory wheelchair user is someone who uses a wheelchair but is also able to walk for certain distances or under specific circumstances. The term “ambulatory” means capable of walking, so an ambulatory wheelchair user might use a wheelchair for a variety of reasons, such as conserving energy, managing pain, or ensuring safety and stability when walking is too difficult or risky.

For many people with conditions like mine.. Functional Neurological Disorder (FND), Ehlers-Danlos Syndrome (EDS), or other chronic illnesses.. mobility can fluctuate throughout the day. There might be times when I can walk short distances using a walking stick, but for longer distances, or when my symptoms worsen, I rely on my wheelchair. This helps me maintain independence and prevents exhaustion or injury.

Being an ambulatory wheelchair user can sometimes be misunderstood, as people might assume that if someone can walk at all, they don’t need a wheelchair. However, the reality is that the wheelchair is a vital tool that allows me to move around safely and comfortably when walking isn’t an option.

In essence, being an ambulatory wheelchair user means having the flexibility to use both walking aids and a wheelchair, depending on what my body needs at any given time.

A dynamic disability is a condition where the severity and impact of the disability can fluctuate over time. Unlike static disabilities, which remain constant, dynamic disabilities may vary from day to day, or even within the same day. This means that a person with a dynamic disability might experience periods where they feel relatively well and able, followed by times when their symptoms are more intense or debilitating.

For example, in my own experience, living with Functional Neurological Disorder (FND), Ehlers-Danlos Syndrome (EDS), and bowel issues, my mobility and symptoms can change rapidly.. sometimes within seconds, minutes, or hours. There are times when I can manage with just my walking stick, but at other points in the day, I might need my wheelchair, and there are also times when I have to stay in bed.

Because dynamic disabilities are not always visible or consistent, they can sometimes be misunderstood or overlooked. People might assume that because I was able to do something earlier, I should be able to do it later, which isn’t always the case. This is where my mobility aids and medical devices become crucial.. they provide the support I need as my condition fluctuates, helping me maintain independence and improve my quality of life.

Understanding dynamic disability is essential in recognizing that disability isn’t always predictable, and that individuals might need varying levels of support depending on how their condition is at any given time.

And that is exactly how I am and how I have to live on a daily basis. My symptoms can literally change in a blink.. that anything could be affected, resulting in me needing more then my walking stick. Or just my hand rails for support. 

My life hasn't ended just because I'm now disabled and needing mobility aids and 24/7 care.

Thanks to the aids, devices and support I have.. I'm living my life.. I'm enjoying my life.. 

And I'm no longer missing out on precious time and moments.. I'm fully in it living it and capturing it all!

So yes.. to me.. Mobility Aids Are Life!