This month is Disability Pride Month, so I thought I would shine a light on how my illnesses affect my life.
Ehlers Danlos Syndrome
This is a connective tissue disorder that affects how stable my joints are, for me personally this illness has affected me the worst though I was only recently diagnosed. This illness was something I was born with and is why I spent my childhood in pain being told it was just growing pains. In reality, the constant walking incorrectly, and stressing my joints is why they think I got fibromyalgia.
This gives me a low pain that is always there, fatigue, and strange sensations and pains. It is a very bazaar illness I am still learning about, a great YouTube channel for learning more is Lord and Lordettes.
Being constantly tired slows everything down, anything I want to do or be a part of has to be planned and accommodated. It stops me seeing friends, going out shopping whenever I want, and controls how much I can do around the house. I think this illness is the one that holds me back the most and stops me doing what I want to do. If I go out, I use my Rollz Motion Walker that converts into a wheelchair so I can sit if I need to, while having independence to walk if I can. If the distance is too much for me, it easily changes into a wheelchair so I can rest. Everything I enjoy needs to have rest before and after and means that I always feel like I am trailing behind everyone else. It’s frustrating but also the Illness that has taught me the most.
This dark illness has often come to stay since I was about 14, but probably before that as well to be honest. Depression is hard to push through, especially when you know though it’s passed, it will soon be back again. My last big flare was at the start of this year, it stopped me making YouTube videos something I love, stopped me doing witchcraft or reading my witchcraft books. It’s slow like walking through treacle and leaves me thankful for the reminder to enjoy life when I can.
Generalised Anxiety Disorder
I grew up with a father with anger issues, it was at times traumatic and left me with a lot of confidence issues and they think why I have this. As a child I would be sick before school, I had nightmares about getting lost around school and chose the same classes as my friends so I could walk with them. As I got older, I would constantly rehearse where I was going, I struggled to make friends because I was so afraid of life. Now, it leaves me housebound unless I have someone with me, I struggle to chat to people, and I often have panic attacks when out of the house. I have rigid rules and routines that help me not to panic. Anxiety has always been there, and I fear always will be.
How my illnesses affect my life:
Together these illnesses leave me housebound, in constant pain and struggling to believe in myself. I don’t push my YouTube channel enough because I’m terrified of letting anyone down. I’m unable to keep our home clean, I struggle to do the simplest tasks. And through it all constant negative thoughts intrude on my life that I try to live mindfully. I meditate daily,but those thoughts are my illnesses and cannot be breathed away quite so easily.
Through it all, I am proud of the person I have become, I am kind and caring, I help look after my mom who has Multiple Sclerosis. I do my best to raise awareness and to support others through this blog and my YouTube channel. So, this disability pride month, remember without your illnesses you wouldn’t be the amazing person you are today. I hope showing how my illnesses affect my life with show you that we all struggle but we are stronger because of it.
Thank you xx
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