Receiving support and love - what does it take?

Pleasure project: This morning I've been really looking at how my health is. This weekend I had a powerful conversation where I was asked, "Who would you be without your illness?"

And I was struck by the fact that I've been struggling with chronic illness since my pregnancy 19 years ago. I've worked hard to be more and more well. Really fucking hard! This weekend I had the beginnings of a migraine for the first time in like 5 years.

It was a big wake up call. Both in that I've been not having migraines and in that - holy fuck I could get migraines again!

So the answer to the question is: I'd have to be a lot better with my boundaries. Like, a way lot.

And uh, that's hard shit.

This morning I had to tell some folks that I can't do a thing, or come to a thing, or say yes to a thing. And that I might need more support. And I said to Jacques that I was afraid that he'd leave me if I asked for yet more support. Which I immediately recognized as being code for: I don't feel worth the support I need to be well. Fortunately I managed to say that with my out loud voice.

It feels like so much. I'd have to admit that I'm still quite sick. I'd have to ask for more help, I'd have to say no a lot more and a lot more clearly. I'd have to tell people I'm sick. I'd have to sleep more, and take less meetings, and make my business more sustainable. It sounds fucking exhausting and super vulnerable. And damn it, it's the work!

And his response, which felt like it echoed throughout the multiverse is: I love you! You are totally worth it!

So now I'm sitting here crying. Weeping for the possibility that I am actually worth the love and support, good food, boundaries, rest, love, sleep, attention, sex, touch. connection, eye gazing, money, time resources and love. Crap.

And if I'm worth it, you're worth it - worth the love and pleasure and boundaries and whatever it takes to have your version of being well. It's such a vulnerable place. And I pray that you'll be in it with me.

So I want to say the thing to you that I needed to hear which is: I love you too! You are totally worth it!

More on illness and support - from the CP13 thread

This weekend at Bibleution so much happened. One of the things that happened is that in a conversation with the amazing @Bric... we talked about our chronic illness stuff. The question arose: Who would you be without your illness?

And that was huge for me. I don't know that I've looked at it in quite that way. I had 3 realizations about it - one is that in order to heal more I have to have waaaaaaaaay better boundaries than I've been recently. I nearly had a full on migraine this weekend for the first time in 5 years. 5 years!!!! So no, there's a lot I'm not going to do going forward. I'm not even sure what that looks like honestly. I'm just barely starting this journey.

The second, is that I need a lot more support than I've been getting. In a conversation with my beloved this morning I was feeling very, very vulnerable because I needed to ask him for yet more help. He's incredibly generous with me and... And I had the story that if I asked, he'd leave me. I immediately recognized it as a story about fear and about not feeling worthy and deserving of support. About how I long to be supported and loved and seen and yet desperately afraid. So I told him my story and he said the thing that is both true for him and what I needed to hear: "I love you! You are totally worth it!"

It changed the course of my day. And in truth, he's changed the course of my life and work with his love and support. I've never had this level of support in my life before. Literally ever. Not from my parents or other lovers or partners. It's felt like I needed to fight for every single bit of support I've ever gotten. Ever.

And I have - fought for it. My condition went undiagnosed for 14 years. I've fought for medical attention, for medicine, for health care, for work, for my son, my home, my health, the right to live my life my way. Literally everything. So there's no surprise that I spend a lot of time very, very angry - it has literally saved my life hundreds of times over to push for what I want, for the right be alive. To advocate and not give up, to be angry to use that to make sure I can live. I'm not yet willing to give it up - not yet. But as I get what I need a bit at at time, it softens. As I no longer have to fight for every single thing, I relax more and more.

The third thing is that I realized most of you have no idea that I'm chronically ill. That I spend a fair amount of time in pain and that's why I don't do a lot of things and why I sometimes turn away and go, or why I don't stick it out until the end, or sit in that big chair - I can't. I can't sit in a regular chair, after an hour I'm in incredible pain. I think people think that I'm just fat and that it's my own fault, when in fact my multiple conditions/diseases went undiagnosed for 14 years and so spiraled wildly out of control and it's only been the last 5 years that I've been getting them under control. That means I've been chronically ill for 19 years. Nearly all of my adult life.

I'm really, really tired of talking about it and explaining about it. I don't want it to be center stage. But in doing that I have made it so that I am not getting what I need, that I don't know how to get what I need. My disability is inconsistent - sometimes I can and sometimes I can't do any particular thing. It's very moment to moment. Often I'm quite happy. But often enough I need support or someone to listen to me. But I'm not weak and I don't want pity - I have had an incredibly hard time learning to receive and there are ways that I still have a hard time. Like everyone's coaching each other and I often just can't receive it. Receiving kindness for no reason has been suspect in my life - code for someone wanting something from me.

Anyway, I just want you to know me and to know that I'm not trying to keep myself away from you or to distance myself from you in my anger or frustration, but it's kept me alive for decades. I'm working on learning new ways of being.

Thank you for hearing me.