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My Own 24 Hours

On Sunday afternoon (which was yesterday although my brain continues to refuse to accept this fact, even after doing all of the Monday things), my cousin messaged me asking how my day was. I told her that I wasn’t getting as much done as I wanted to, but got more done that I had hoped for. There’s so much my brain wants to do, and my bodily capacity is not keeping up.

When she messaged me that, I was thinking about how grateful I was for the various people in my life that keep me accountable, and those around me that listen and empathize without judgement. I thought about the people in my circle that feel safe enough with me to tell me they’re feeling down and who I can safely share the same with. I was feeling a great deal of gratitude for those connections, and for the space I have been giving myself to not become mentally overwhelmed, even though I still felt a little guilty for not getting done all that I wanted to.

This morning one of my bonus Moms from childhood met me for a very hastily squeezed into my schedule late birthday lunch. I was late so our time was even more brief, but it was so good to see her and other family, even if it wasn’t for as long as I wanted. There I go over-planning again.

I’ve got deadlines and promises dancing in my mind, and sometimes they make me short of breath. My closest friends and family are my most avid supporters, and often ask me if I’m still doing this writing thing. I make a small, hesitant sigh while listing off in my mind the paperwork, business cards, and you know–actually telling people I exist part–that I am not doing and should be; and I say “yes, but not as much as I want to be. And I really should be blogging more.”

I’m stalling to buy those last few holiday gifts, and am still taking down Halloween decorations so I can put up my tree that I always put up and decorate on Dec. 1, and here it is 10:01 PM on Dec. 7… And I would typically follow that with some mental quip about how I’ve got to get it together. I’d be lamenting that the dishes aren’t done and I’ve washed the same damn load of laundry three times now because I keep forgetting it even exists!

But today, I don’t feel bad about ANY of that. Because today, on my very short glance into Facebook, Dawn Super of Going Beyond Coping posted this fantastic meme about people with chronic illnesses in her Positively Narcolepsy FB Group. The most impactful words on it for me were,

“…we all get 24 hours but they are definitely not. the. same.”

Dawn Super, author, blogger and vlogger at:, Going Beyond Coping FB Page, and the Positively Narcolepsy FB Group.

I mean, so timely right?! And then I saw another raw and honest post about how exhausting this all is from Momma on the Rocks, and I thought of all my lovely and beautiful family and friends, and all the things we are separately going through. All of the hard, different things, but we still keep going.

Over the past week I have been expressing to those around me that I am working on accepting that my level of production will likely not ever match that of my neurotypical, chronic-illness-free peers. And that’s ok. It’s still a work in progress, but I really can’t thank Dawn enough for her words.

Because the things I am capable of doing in my own 24 hours, well, those things are amazing.

Heather Romero, The Happy Typist

Please note, I am not sponsored by The Mama on the Rocks, nor Going Beyond Coping/Positively Narcolepsy. Nothing written here is a direct endorsement by either party and they may not agree with all I say. I am, however, deeply inspired by them. These were some of the people that shone light into my world again, through a glowing screen, when I thought all was lost and that the opportunity for my dreams had passed.

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“Potential” is a Dirty Word

This phrase has been wandering about in my mind for months now. Perhaps even near a year. Technically, it was “potential is a four-letter-word,” but we can all count and don’t need to get tripped up on technicalities. I was watching my favorite ADHD YouTuber “brain,” on How to ADHD. And she was interviewing someone and once again they brought up how they heard about all that potential they had as a student, or child, or whatever moment in life we hear such things. And we hear it a lot.

Here’s what hearing about my potential did for me, it helped me convince myself that I was a failure not made for this world. Why was it so impossible to live up to my “potential.” I was so smart, why couldn’t I live up to my potential? I was so talented, why couldn’t I live up to my potential? So creative, why couldn’t I live up to my potential? Why couldn’t I just make myself do the things that needed doing to be successful and live up to my potential?

And then, boom, I was 37 and learned all about my “potential” and the roadblocks that were in my way my entire life. The roadblocks we had identified for my spouse and children. The anger was a raging fire at all of the loss of time and “potential” that had been wasted behind me. The rage has burned out but the fiery desire to live and be who I want to be still lives.

I won’t spend time wasting away, grieving my “potential.” I won’t tell my children about their “potential,” either. Instead, I will tell them they are creative and beautiful and smart in their own way. And I will tell them that yes, it is hard. Hard to maintain a schedule. Hard to do what we don’t want to do, hard to concentrate on anything but what interests us most, hard to get up and go to work, hard to go to school, hard. And I don’t mean regular people hard, I mean for us it is like being sequestered within a torture chamber kinda hard. So please, don’t compare a neurotypical brain to what we experience. It is not the same. Love us and guide us through it and you won’t need to mention our “potential,” not even once.

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Choose Kindness

It has been so very long since I have “picked up the pen,” but in this new climate it seems there truly is no excuse to continue to avoid it. In some ways, I am more busy than I had found myself before. The kids are home and we are gearing up towards virtual learning. I am blessed that I used to be a homeschool mom, so this is less of a shock for me than it is for many others I am sure. In other ways, there is so much more time on my hands. Less physical appointments call for fewer transitions and in and outs. Fewer reasons to literally drive myself into exhaustion.

For me, this is better. For others it is most certainly worse. Regardless, this is scary. It is scary to wonder what the economy will do, to wonder how bills will be paid and who will still have jobs and businesses, who will still have their very life at the end of all of this.

It is easy to be be entirely self-centric, and do and post what makes us comfortable (within limits–please do keep to social distancing to keep yourself and others safe). It is easy to think the way we need to think and immediately become offended at those who think differently.

I suffered an aggressively abusive relationship, I cannot think myself trapped. If I think myself trapped I will panic and the young, impressionable, special needs children I have at home will suffer for my loss of composure.

However others may see this as a reality, and looking at facts is what is a comfort to them. That does not make them wrong and me right, or vise-versa.

Some people have dark humor, and that is how they handle things. That does not mean they don’t care that people are dying by the thousands. It simply means that they need what they need to keep themselves sane and safe.

Some need to say they are scared and feel panic and are sad. That is ok. Some need to say that they are looking at things in a positive light. That doesn’t mean the former is less right or valid than the latter.

It is ok to deal with this how you need to. We are social creatures raising our voices and social media is alight with our opinions. It’s ok if yours is different.

However, I do not wish to be silenced, nor do I wish to silence others. So when you come across a meme or post that you disagree with to comment, consider there is another *person* on the other end of your words. If you can’t be kind, scroll on. If someone can’t be kind to you, raise your voice. No one should have to be silenced.

We are all dealing with this in our own way, but agree or not with how someone feels, there is no need to be unkind. And to any that may have felt silenced by my responses, I absolutely apologize. Be blessed, stay safe and stay well. We are all in this together.

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Believe in Magic

So here I am, well past 100 days of no. While it was not comfortable, it was every bit worth it. It is stunning what can happen when we make room for ourselves.

I have two takeaways from this, maybe three. One, you can love others without hurting yourself. At first I thought everything was awkward and uncomfortable with friends and family. And then I realized that for the most part, it wasn’t that. It was that they were respecting my boundaries and so weren’t asking as much from me. Perhaps it’s just me, but I think that last post seemed to scream I need a break and I am overwhelmed! And a break was what I was given. I was invited to participate and help in different things, but it was not automatically expected.

Two, you can love yourself without hurting others. When those of us who have suffered from several abuses, particularly of the narcissistic kind, find ourselves on the other side of that we often feel that taking care of ourselves will mean that others will say that we don’t care for them. We’re not used to husbands that remind us of our “oxygen mask,” and friends and family who say “you can’t do it all.” But that’s where healing finds me, and those are the confirming words that healthy boundaries bring.

And yes, I would say there is a third and very important takeaway. People who truly love you, still do even after you make changes and put boundaries into place. They might even be proud of you for it.

To my friends and family that helped me discover my backbone and develop such healthy boundaries, thank you. And thank you for respecting them.

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100 Days of “no”

Chronic conditions, illnesses, mental health… they leave a long and bumpy journey both ahead of and behind us. So many things are genetic and already unavoidable. So many more things are made worse by, or even caused, by traumatic environments and experiences. And those experiences cause us to live in very narrow comfort zones.

This last week I took a chance. I left home for a week to wear my other hat, the one I’m wearing in this photo. We heard from amazing speakers who taught us to tell our stories and step outside of these comfort zones and grow. Michelle Poler of the 100 days without fear project was one of those speakers. I have been fired up since I saw her on Saturday. I cannot get her and her message and her experience out of my head.

I have been consistently mulling over what I could do, what habit I could change, over the next 100 days. Broad things like be consistent and maintain a routine floated to the top pretty easily. But do those things really inspire? Do they actually push me outside of my boundaries and create a lasting, impactful change on mine and my family’s lives? I don’t think they do. Because those are the things we are supposed to do. Those are the comfortable things.

As I was pulling my conference swag out of my bags I came across a magnet given to me by another attendee and I placed it on my fridge. Right beneath “somedays it’s not even worth chewing through the restraints.” But actually, I can. Every day is worth it, every moment that matters to us is worth it and worth defending.

And it came to me the habit I need to change. See, I say yes a lot. I say it out of fear. Out of worry for my self-image and fear for my relationship security with others. I worry that if I say no, if I dare to set boundaries, will they love me anymore?

This is not going to be anywhere near comfortable. Thinking of fear means realizing that taking up my own space and setting my own boundaries is scary to me. So scary. And I will conquer that fear by saying no so that I can say yes. It is time to say yes what is meaningful in the life of myself and my own little family.

I began yesterday. Narcolepsy means driving sleepy is driving dangerous. I will no longer drive while sleepy. That is going to be inconvenient to those around me. I’m choosing to believe they will continue to love me.

Today I said no to taking my children to be in the parade. Because Mommy just got home and I needed to hold them and lay around and be a little less busy.

Things I intend to say no to over the next 98 days?

1. Unsolicited parenting advice.

2. Unsolicited marriage advice.

3. Anything that sets me on fire to keep other people warm.

4. Unsolicited advice regarding my health.

5. Comparison of my health and disabilities to yours.

I am sure I can think of more, and will. For now, I am ready to set my boundaries and I am ready to succeed, with my team, my family, our way.