I’m Still Here.

I had to dust off this blog before writing this. I hesitated longer than I want to admit. Part of me worried that what I had to say wasn’t interesting enough, or useful enough, or worth taking up space. In talking with my therapist, I realized something important. Writing helps me process. It helps me slow down, make sense of what I’m carrying, and center myself in my own body again. And even if that’s all this does, it’s worth doing.

So I’m sharing this not for sympathy or attention, but for clarity. For myself as much as for anyone else. This is me naming what’s happening inside my body and nervous system, and choosing to take it seriously instead of minimizing it or trying to muscle my way through.

I live with very advanced Ehlers Danlos Syndrome. It is a progressive, incurable, and mostly untreatable connective tissue disorder. Over time, it affects joints, muscles, organs, and the nervous system itself. For me, this includes severe daily pain, increasing instability, and a sharp decline in mobility. Pain is not an occasional flare. It is a constant presence that has to be managed alongside everything else. My body no longer behaves in predictable or reliable ways, and the progression has been faster than I expected. It continues to reshape my day to day life in ways I am still learning how to navigate.

Alongside that physical reality, I’ve been some flavor of neuro spicy my whole life. That part isn’t new. My brain has always taken in more information, noticed more nuance, and required more structure and intention to feel regulated. What is new is that I’m now in the process of pursuing an actual diagnosis and putting language and structure around something I’ve lived inside for decades without much external validation. That process is grounding and complicated at the same time. It brings clarity, but it also brings grief, questions, and a lot of looking back with different eyes.

Living with both a progressive physical condition and a neurodivergent nervous system has changed how much energy I have and how much margin I carry. I’m learning that my body now asks for more intention than it used to. Things that once felt automatic require planning, pacing, and recovery. Physical and emotional spoons are finite, and fatigue is a near constant companion. That reality forces a recalibration of expectations and a letting go of the idea that effort alone can override physical limits.

Because of this, my nervous system has less buffer. Less flexibility. Less capacity to absorb stress, change, or disruption without consequence. What might register as minor for someone else can land heavily in my body. Not emotionally dramatic, but physically and neurologically overwhelming. Often my system reacts before my brain has time to contextualize it.

There’s another layer to this that feels important to name.

I’ve been in a D/s dynamic for over twenty three years. That part of my life is deeply familiar and embodied. I am also incredibly lucky to have a Daddy who is attentive, protective, and deeply understanding of my body and my limits. She is my North Star. When things feel heavy or uncertain, she is who I orient toward. She does not fix what cannot be fixed, but she makes it feel less overwhelming by being steady, present, and consistent. Having that kind of care in my life makes a real difference.

What’s newer is playing with others. I’ve only been doing that for about four years, and two of those years were spent doing the work of getting out of my head and into my body. Learning how to feel present, grounded, and comfortable in my skin took time and care.

Just as that ease was beginning to feel accessible, my mobility declined rapidly and my pain increased. Now, play sometimes takes spoons I don’t have. Not because the desire is gone. Not because the connection doesn’t matter. But because my body cannot always meet my heart where it wants to go.

As a result, my play circle has become smaller. Much smaller. I may never have the spoons for spontaneous or pick up play at events, and I’m learning to be honest about that without shame. What I do have is a very small, trusted circle of people who understand my limits, respect my capacity, and take consent seriously, including what my body can and cannot do.

Within that smaller circle, I’ve also found my little space. For a long time, I didn’t understand it. I was embarrassed by it and didn’t know how to talk about it, so I told myself the why didn’t matter. And in many ways, it doesn’t. But I do understand it now, thanks to a really good therapist, and that understanding has made it easier to accept.

I want to be clear about what that means for me. This isn’t about being a baby or a child, and it isn’t about identifying as a certain age. It’s about feeling smaller. It’s about being in a space where helplessness was natural and expected, not something to fight or apologize for. In that space, being cared for felt normal and uncomplicated. It was allowed. It was even seen as acceptable, not as a burden or a failure. That feels very different from the kinds of dependence my illness creates now, which are medical, heavy, and often wrapped in fear or frustration. Littlespace gives me access to care without shame, and that matters more than the label ever did.

Littlespace, for me, is about reducing pressure. It’s a mental space where expectations are lower, where my nervous system can settle, and where I don’t have to manage as much input or decision making. It connects me to a time when life felt simpler and required less effort, which is something my body and brain need more of now.

When I don’t have the spoons for kink or physical play, that headspace still gives me connection. It keeps me linked to a community that has broadened its understanding of intimacy and care, including things that were once considered taboo. That matters to me. It reminds me that closeness and belonging do not have to look one specific way to be real.

There is grief in these changes.

Not loud or dramatic grief, but the quiet kind. Grief for timing. Grief for experiences I waited a long time to feel ready for. Grief for the version of my body that could say yes more easily. Holding that grief alongside chronic pain, fatigue, neurodivergence, and a progressive condition requires constant recalibration and honesty.

For a long time, I tried to minimize these realities. I told myself I should be able to do more, handle more, push past it. I told myself and others that I would be fine. That other people had it worse. That I’m tough. That I can handle this. None of that was malicious or dishonest. It was survival language. But that approach didn’t make me stronger. It made me disconnected from myself. That story carried me for a long time. It doesn’t anymore.

I’m learning now that listening earlier matters. That naming limits isn’t failure. That my body isn’t betraying me. It’s communicating. Pursuing diagnosis, understanding my nervous system, and adjusting how I move through the world has been part of rebuilding trust with myself.

This isn’t about special treatment or lowered expectations. It’s about accuracy. Different bodies and brains require different kinds of care, and mine now asks for more intention, more gentleness, and more pacing than it once did.

I’m still adapting. I’m still grieving some losses. I’m still scared of what comes next. And I’m also still here, paying attention, staying present, and choosing honesty over denial.

So why am I sharing all of this.

I’m sharing it for visibility. For people who are quietly struggling to accept new realities in their bodies or their capacity and don’t yet have language for what’s changing. For someone who is newly disabled or becoming disabled and wondering if they still belong. For someone who feels like their world is getting smaller and is trying to make peace with that without disappearing.

I’m sharing it for people who are dating or loving someone with physical limitations and want to understand what support, patience, and consent can look like when bodies are unpredictable. For partners who are doing the quiet work of holding things together and rarely get recognized for how much that matters.

I’m sharing it for event planners, producers, and community leaders who want to understand the differently abled members of their communities better. Not as an afterthought or an accommodation checkbox, but as people who want to participate fully and may need things to look a little different.

And I’m sharing it for myself. Because naming reality helps me stay present in my own life. Because pretending things are fine no longer serves me. Because writing is one of the ways I stay grounded, connected, and honest.

If any of this resonates, you’re not alone. And if it doesn’t, I hope it still offers a clearer window into how some of us move through the world now.

This is where I am. This is the body I have. And this is me choosing to live in it with as much clarity and care as I can.