Get Ready With Me, Disability Edition | What is Normality, Anyway?

Get Ready With Me, Disability Edition | What is Normality, Anyway?

This video is dedicated to all you warriors out there. It’s not always easy. But we’ve got this. In 2011, I was diagnosed with a chronic, life-threatening and incurable autoimmune vasculitis called Takayasu’s Arteritis. This means that my immune system got confused and started attacking the main arteries that provide blood from my heart, to my brain and arms. The inflammation is currently under control thanks to medications, but the damage is permanent. The arteries that are most affected lead up to my brain and my left arm. The medications, while absolutely necessary, also have unpleasant side effects and make me very tired. I will likely be on some combination of medications for the rest of my life as the illness cannot be cured, and I will likely experience periods of remission and relapse throughout my life. The illness is chronic – “chronic illness” means that you don’t get better, like you would from a flu or cold – it’s ongoing. I have also been diagnosed with a variety of other conditions that come along with this autoimmune illness: IBS, adrenal suppression, Fibromyalgia (a chronic pain condition), chronic fatigue, immune suppression, osteopoenia, and I also live with generalised anxiety disorder and bouts of depression.

I use mobility aids such as a shower chair, wheelchair and mobility scooter and occasionally a cane to assist with fatigue, pain and dizziness. I don’t need them every day and I can, on very good days, walk about a kilometre (a bit less than a mile). Mobility aids have been incredibly empowering for me, as they let me leave my house and live my life without being horribly fatigued/in pain/dizzy all the time! I’m able to do so much more than I was able to before I got my mobility aids and I’m so grateful for their existence.

If you’ve always been healthy, you might think this all sounds pretty dire and tragic.

But it’s not.

I don’t hate my life, or wish I had someone else’s life. NOT AT ALL. It’s not always easy living with disability – and at times, it can be absolutely terrifying and isolating. And while these illnesses are a big part of my life and can affect what I do – they don’t define me. I can still do whatever I put my mind to. I still have options. Disability is just one aspect of what I consider to be an incredibly lucky and privileged life.

{P.S. I don’t speak for every person with a disability!! Everyone experiences things differently – this video just contains MY experiences living with disability.} If you’d like to follow the day-to-day ups and downs of my life with disability and chronic/mental illness, I post about them a lot at @littlepineneedle on Instagram (http://www.instagram.com/littlepinene...).

I also post a lot of cute outfit pics too ;) ❤️ LINKS: One of the best analogies written about living with chronic illness or disability, to help abled-bodied people understand what it’s like is the Spoon Theory: https://butyoudontlooksick.com/articl... If you’d like to learn more about vasculitis, including Takayasu’s arteritis, and donate to help find a cure, visit the Vasculitis Foundation: http://www.vasculitisfoundation.org/ Hank Green: Living With A Chronic Disease https://youtu.be/rr8wIiypS_g 

WEBSITE http://www.annikavictoria.com 

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by Annika Victoria

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