My last blog ended with the question: What if my body holds the answers?

I think I’m beginning to understand what that means.

No one really looks at me as a collective. Gynaecology focuses on. my endometriosis, Neurology focuses on my nerves, Fibromyalgia exists in a different place again, and to top it off I have ADHD and Autism with very littler support in understanding hot to actually live with either of them. Yet they all interlinked. The common denominator I keep coming back to, is the nervous system.

So instead of constantly trying to git myself into a world that causes harm to my body, what if I built my world around my body? This was the birth of the Atlas.

I recently went to the Emergency Women’s department. During my surgery in May, Endometriosis was found practically everywhere within my pelvis. Along the pelvic wall, around my bladder, bowel, rectum and everywhere in between. They confirmed the growth along my nerves caused sciatica symptoms in my lower back and legs, and they found a 6 cm by 6 cm cyst on my right ovary. Luckily the surgeon was able to save my ovary, but having so many surgical sites has made this recovery difficult. I struggled to wee and have a bowel movement due to the inflammation and it was this that led me to the Emergency Department.

After doing the usual checks, and confirming there was no other cause, even the Dr said unfortunately there’s nothing they can do for me except help me manage the pain and give me a syrup to help me have a bowel movement. I understand that my entire insides are irritated as a surgical site, so I can’t feel or push, and every movement is passive.

The suppositories gave me some relief, and I am grateful for them. The suppositories have provided the best relief for my pelvic pain, yet I left disheartened. Walking out of a Doctor’s office with yet again another prescription and more questions than answers. And since I also have Fibromyalgia, ADHD and Autism, when one condition flares, it can trigger the other conditions. More pain, less function and extreme fatigue. I realised that the doctors should not only send me to Gynaecology. There should be a whole team looking after me to identify patterns and learn my body’s limits. We need to know when she’s telling me to slow down. What’s triggering what? How do I know I’ve reached my limit? What food helps inflammation and what in fact triggers it? How does each condition interact?

Instead, I have to find much of this out myself. I can’t rely on a team to teach me how to manage all of these conditions together. With Autism especially, I was given a diagnosis. It gave words to my experience, but no one then sat down with me and said, this is how you might live with this, this is how you might understand what your Brain and body needs.

It made me feel unsupported, but it also made me curious. To know all of these things is to know myself. And to know myself, the true me without the mask, involves a lot of curiosity.

The Atlas came from both necessity and artistic instinct. It’s necessary because I need to understand my body and her limits if I’m going to build a life that is sustainable for me, but the artist in me also wants to connect the dots.

When I’m overwhelmed, I lose the ability to speak. I just cannot function enough to form sentences. I have to type my words and equally I need to receive words to be able to engage. Even then, I’ve always said that I struggle to articulate myself but a friend once said that maybe it isn’t that I’m not articulate, maybe I just speak clearer through my art. That stayed with me.

I can encode the emotion I felt during an experience and use materials, brush strokes and symbolism to speak the meaning. Art is my communication. All of my best art has come from lived experience and the atlas will provide the threads of inspiration and events that lead to a piece of art.

Building my world around my body also means creating a home that functions for me. I’ll soon be moving from a first floor flat in a town centre, to a house in a small village with a good amount of private, outdoor space. It seems like perfect timing. I can create a bedroom that only knows rest, a Kitchen where I prepare and eat the fuel my body needs. A living room for lounging or hosting. And a private garden where I regulate and connect with Mother Earth. I’ve even looked at colour themes, textures and lighting because I want to make the whole space beautifully in sync with me.

Environment is huge but building a world around my body also means asking for help when I need it. I’ve spoken with the Adult Neurodiversity Social Care team who have identified various areas in which they can supports me. And I will be working with a well-being coach.

During our initial phone call, she helped me realise that I am operating in a state that is beyond fight or flight. MY body is putting what energy it has into doing its basic functions. Pain signals can also cause the Nervous system to brace, and I explained a feeling of constant brace, with the inability to really exhale and release that tension. ITs constant and there’s factors that just keep piling onto of an already stretched thin nervous system.

I’ve never worked with a well-being coach before, and I was uncertain of what they did. She explained that we must teach our nervous system that we are safe through small, consistent actions. It isn’t a quick fix and it requires effort and consistency. With her, I hope to develop a routine and learn to translate my body to understand what state she is in. I want to regulate and have a moment of pause before I get to the phase I am in now.

I view the Nervous system as an archive. An archive of memory, ancestral memory, trauma, emotions etc. Because of this I believe that working through and releasing or acknowledging each memory, can help relieve the strain and therefore relieve me of some of my symptoms. IT may not make the pain go away, but calming my nervous system could help remove the constant brace I’m feeling. I want my body to know that it can trust me to know when to stop.

It also involves allowing myself the grace to heal and stop trying to keep up with those who have no idea what a day in pain looks like. In order to know myself and my limits, I need data.

And I’ve decided to create Atlas’s of myself, Chanelle, and as an artist, BlackButterfly.

The Wynter Atlas focuses on when I notice moments of change. I tend to pull up Chat GPT, (Who I’ve named GG LOL), and I share my experience in there. Feelings, sensations, environment, what I did, what I ate, what I drank. It me dumping data as its happening and I use GG because it feels very conversational. This then creates the entry point for Wynter Atlas. Within each entry, there will be;

• Coordinates – Individual moments of lived experience.
• Field Notes – Where I explore what I notices, question it, and start pulling at what it might connect to
• Threads – The recurring patterns that run across different coordinates.They are linking the system
• Specimens – Meaningful physical things or objects
• Layers – The different systems interacting at once eg fibromyalgia, hormonal changes, environment.

By using these systems I can begin to visually identify patterns and really delve into areas medical teams don’t even access.

The Butterfly Atlas operates slightly different. This is based on a framework as apposed to lived experience. I looked at the various areas my Art and Research branch out to, while intentionally keeping everything linked. The coordinates of this Atlas are specific to moments that are integral to the art creation process. To see the coordinate at first glance may make it difficult to place in my art, but by attaching threads, research fields, project names, the reader will be able to follow the full journey from one moment expanding out and manifesting in art form.

Success for me is picking up on the signs and being able to confidently say no. To check in with myself first, understand what my body is capable of that day, and work in sync with my body.

Success would be avoiding complete burnout and shutdown.

At the minute, I’m all go, then I’m forced to stop, and that stop can last months. I’m still only four months post-surgery, and even though externally I look fine, internally I’m still doing a lot of healing.

I also need to understand what my new baseline is. Did the surgery help my symptoms? Can the coil really help me manage them?

I don’t think the Atlas is supposed to give me all the answers at once. Really it’s there to help me notice what keeps returning: the same symptoms, the same patterns, the same moments where my body whispers before it screams.

I’ve spent so much time trying to make sense of myself in a straight line. But maybe that was never the right shape for me. Maybe I dont need to create a coherent timeline when my brain doesn’t experience I’ve that way in the first place.

Maybe I’m not building a timeline.

Maybe I’m building a map.