I was up again at 1AM this morning. My trigeminal neuralgia has been a little more relentless these days. I’ve found myself in enough discomfort to not be able to sleep but not enough to warrant heavy-duty pain meds. I reserve those for when the pain is at a certain point. But these mornings that I wake up and am unable to fall back to sleep are indeed hard.

There are herbs that could help me relax more: passionflower, chamomile, lavender, skullcap… motherwart would even be a good choice. Ginger to help warm me and help me feel cozy as I am often cold when I awake in the night…

But for tonight (or rather this morning) I meditated. Yoga Nidra first. Then another meditation visualizing miracles. I envisioned miraculous healing. I do believe it can happen. I also accept that this is my life now.

I realized at some point last year that I had not yet accepted, even ten years in then, that I am, in fact disabled. I had been trying, repeatedly and unsuccessfully, to live the life I thought I should be living. I had moments of something like acceptance, but they were fleeting… an un-anchored releasing of the anger, sadness, rage, grief that this is my life.

I had not realized until recently that much of what I feel surrounding my life is shame. Shame that I can’t do what I thought I’d be doing. Shame that I couldn’t finish my degree in field loved when I was diagnosed. Shame that I struggle every day to just LIVE. Shame that I am afraid to make plans. Shame that I have to constantly cancel plans and appointments. Shame that I have to let people down - often. Shame that I have to do lists a mile long like everyone else but I only have enough energy for a few things on good days. Shame that some days I am in bed all day struggling through the fog of heavy pain killers. Shame that I can’t change this.

I am working on fully accepting all of these things because it is. It just is. This is my present condition. I can accept each moment for being what it is. I can accept myself for who I am. Right now. And right now. And right now.

I have avoided talking too much about my disability because I don’t know how to talk about it exactly. It’s chaotic - every single day is a negotiation between symptoms and how far I can push myself without ending up too deep in another horrible flare-up. Maybe showing the chaos is exactly how I can help others. First, to help those in similar situations feel not so alone (because omg is it othering). Secondly, to give those who don’t have an issue like this an inside look to see what it’s like. It might bring some understanding and compassion towards those with invisible disabilities.

With that in mind - I am going to try my best to be as present as possible here and on youtube even though it will be chaotic and not at all picturesque. Trying youtube last year was an utter let down because I realized my disability was so pervasive that it would have to be at least part of what I talked about - a constant “friend” on the channel, if you will - and I wasn’t ready to deal with the fact that it would come up in probably every single upload.

Somehow this all has to have happened for good, right? And maybe not. Maybe this is all just me recording for myself this exact moment in time. Something of a running journal both written and video.

So, dear one, I hope you slept well. And if not. I was awake with you… in my own world but one just to the other side of the veil of yours. I love you today.

A Letter from the Land of No Sleep

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