Finding Hope and Respite Through Creativity: Navigating Life with Disability

Feeling Some Kinda Way

Recently I have had a severe lack of motivation to write or to do anything really which is detrimental to myself. A couple of major changes in my life career wise and daily pain, changes to my body I have only really recently started to notice, mainly the muscles in my legs atrophying to over half the size they used to be which has been quite frightening. Fatigue is kicking my ass currently finding myself having unhelpful thoughts, trying to catch them before falling deeper into a depressive state of mind. The constant fight between light and darkness within my own mind is a battle I do not need on top of my daily physical battle. But recently it has been there on an almost hourly basis. Using my creativity and enter a flow state allows me some kind of respite, a noticeable dullness in my pain levels and a silence in the unhelpful thoughts running through my mind.

Happy times and very interested in a game of Connect 4

In other news I'm still waiting on my NHS wheelchair that will allow me some kind of independence currently I haven't got lost in nature in so long, needing someone there to support me well assist me with transfers from the chair to the car, which kind of takes the spontaneous factor out of it, living with a neuromuscular condition requires a lot of planning and organisation even for the most mundane of everyday tasks. Its been 3 months since I was measured and my new wheelchair was ordered but yet still to take delivery of it, having to fight for the most basic of equipment is exhausting, the constant need to chase people up for things that will drastically improve my quality of life, both mentally and physically. Now this isn't the fault of the NHS or its staff, it is a drastically underfunded public body and they are doing their best with limited resources from a government that seems hell-bent on privatising it.

Despite all of these challenges, I am determined to find a way to continue my passion for writing and creating. It's not just a hobby, it's a lifeline during these difficult times. I know that I am not alone in feeling this way, and I encourage anyone who is struggling to find a creative outlet that brings them joy. It doesn't have to be writing, it can be anything that allows you to enter a flow state and forget about the world around you for a while.

I also want to stress the importance of advocating for ourselves, especially those of us with disabilities or chronic illnesses. It can feel daunting and exhausting to constantly fight for the most basic of needs, but we deserve to have access to the tools and equipment that will improve our daily lives. It's okay to ask for help, whether it's from friends, family, or medical professionals. You don't have to do this alone and you are not alone.

I may be facing some difficult challenges at the moment, but I am determined to keep pushing forward, while finding ways to adapt and overcome them. Writing and creating has always been a sanctuary to me, and I am grateful for the moments of respite that it brings me from the constant battles I face each day. If you are struggling, know that you are not alone, and that there is always hope for a better tomorrow. Keep fighting, keep advocating, and most importantly, never give up on your passions and dreams.