As we make our way through July, I want to talk about what this month’s awareness is as it is something I personally deal with on a daily basis along with so many of you and that is Disability Awareness. Living with disabilities, no matter what you have, can be very difficult, frustrating and at times overwhelming as it feels like life is just too hard. We then end up beating ourselves up over not being able to do things we once used to and in turn we make ourselves worse. It’s okay to not be okay. Take one day as it comes. Don’t fight it. It’s about finding a way to live along side your disabilities and not letting them control you. Not an easy thing at all. My struggles are a result of these conditions:-
Lupus
Rheumatoid arthritis
Osteoarthritis
Sjogrens syndrome
Raynauds
Fibromyalgia
PoTs
ME/CFS (long covid)
Each bring there own battles and sometimes when more than one thing is flaring up it’s like I am literally in a body conflict. One will set something else off and then that makes my original flare up worse and then those all set something else off and a vicious cycle happens. It takes it’s toll not just physically but mentally. It makes life even more difficult than it already is.
On a daily basis I struggle with pain and fatigue, which in themselves in debilitating, but when mixed with brain fog to the point you can’t communicate easily – it just makes me angry. I am still coming to terms with the fact that I am disabled and this is my life, these conditions do not have a cure – this is the best it will ever be as it continues to deteriorate.
Disability Pride flag – what do the colours represent?
The Disability Pride flag was created by Ann Magill in 2019 and uses colour to represent the different types of disability and how they affect people individually.
Red – physical disabilities
Gold – neurodivergence
White – invisible and undiagnosed disabilities
Blue – mental health conditions and illnesses
Green – sensory disabilities inc, hearing and vision impairment
Charcoal background – to represent people in the community who have experienced ableism, and those who have lost their lives due to ableism, violence, negligence, suicide, rebellion, illness & eugenics.
The flag aims to raise awareness of people with disabilities and works to challenge and ultimately end the ableist stigma that disabled people are still facing in society today, by promoting that disability is a natural part of human diversity.
(Disability Pride Month flag image created by Ann Magill)
Something that has helped me make sense of things and give me some guidance is The Spoon Theory. If you are not aware of it, I feel once you read it some things will make a lot of sense. It’s something that has helped me and I really hope it does you. The link for that is here Spoon Theory: https://www.mitoaction.org/wp-content/uploads/2023/03/BYDLS-TheSpoonTheory.pdf
No matter what you struggle with, know you are not alone, even if you do feel it, you are worthy, you are awesome but most of all you are a fighter. Take it one day at a time, one hour at a time if need be. But most of all be gentle with yourself.
Sending love and hugs
Squdge xx
💜