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I am Dreaming

I’m hurt, this body’s wearing thin

A beautiful mistake I’m living in

I’m tired, sometimes I fantasize

They push me out to sea

Coins on my eyes

Family, friends say goodbye

Say goodbye

I’m hurt, not hurt enough to die

See I was born to raise, born to fight

I’m tired, not tired enough to sleep

So devil on my chest don’t sing to me

But take my breath, let me be

Oh let me be

-Lyrics from Flags by SYML

I’ve been dreaming about an adventure. It doesn’t help that I’ve been reading To Shake the Sleeping Self by Jedidiah Jenkins. This book about his travels from Oregon to Patagonia on a bicycle are leaving me with so many feelings. I mean, man. How insane is that journey? I can barely ride a bike around my neighborhood and honestly, that is being generous. I can barely ride a bike down our driveway.

I am dreaming about something better. Something that fills my heart and soul. Something that is not the same damn thing I have been doing every day of my life. I have never lived anywhere but here. I have traveled very little. My family would go to Maine frequently when I was a kid. A couple of years ago I spent a month in Florida and I spent a few days in Pennsylvania in May. How am I supposed to know this is where I belong when that is all I have seen of this country, of this world?

I am dreaming of fresh produce, even in the summer. Wearing clothing that is not so suffocating. January is cold and lonely, dark and isolating. Aside from February, it is my least favorite month of the year. I long for the warmth of spring all winter long. I am dreaming of living somewhere that doesn’t leave me missing an entire six month period of time.

I am dreaming of going to Mexico. I want to see the great Monarch Migration. What an incredible experience that would be. We raise and release Monarchs each year. This year we let close to 200 fly free, out of our dining room, to migrate to Mexico. To see the butterflies from the super generation arriving at their destination would bring me such an amazing amount of joy.

I am dreaming of peace. Of quiet. I am dreaming of the ability to handle stress, to have no pain. I am dreaming of the feeling of a warm cup of coffee in a quaint coffee shop with the sun pouring in large windows, tables that don’t tip, a journal full of chicken scratch, and a well loved book. I am dreaming of bubble baths in soaker tubs. I am dreaming of lightness. Freedom.

I am dreaming of wellness. I am dreaming of mental health. I am dreaming of my children, happy, playing, joyous. I am dreaming of a yard full of gardens. I am dreaming of not being allergic to my dogs anymore, having a yard miraculously not full of dog poop, and a fence so the chickens can follow us around like they did once before. I am dreaming of the sound of birds in spring. I am dreaming of the taste of a bowl of Ben and Jerry’s, the windows open, the sun setting, a warm breeze brushing my skin.

I am dreaming of this all with the perfect soundtrack playing in my ears, blocking the sounds of reality. I am dreaming of all of this while I have so much of what other people are dreaming of. I am dreaming of all of this because I live in a constant state of flight mode and I am dreaming of not being in a constant state of flight mode.

I am dreaming of a happy marriage, full of laughter. I am dreaming of who we were, before I got in the way. I am dreaming of my husband’s smile, the corners of his blue eyes crinkling, the way they did that day in Starbucks while we drank coffee and got to know each other and my heart was so full of love I took a picture to keep that moment forever. I am dreaming of the days of being a team. I am dreaming of the days of him calling into work so we could spend the day in bed. I am dreaming of unconditional love.

I am dreaming of life before everything got so damn hard. I am dreaming of life before chronic illness (though I think it was always there, just less noisy). I am dreaming of the future. I am dreaming of being able to breathe without this awful feeling sitting on my chest. I am dreaming of being able to sleep. I am dreaming of being able to use my hands without pain. I am dreaming of finding answers.

I am dreaming of finding answers.

I am dreaming of finding answers because I can’t do this for much longer. I have been saying that for six years. I can’t do this much longer. But now he is saying it too. I can’t do this for much longer. This has been so difficult. I am dreaming of a cloudless blue sky. Grass under my back, tickling my bare skin. I am dreaming of my favorite dog next to me, her head across my belly, the sun warming us both. I am dreaming that she is still here and not gone too soon. I am dreaming of belly laughter I haven’t heard in so long.

I am dreaming of a warm loaf of bread, fresh from the oven, kneaded by my grandmother’s knotted hands, a slab of butter melting on a slice freshly cut. I am dreaming of questions I should have asked my grandfather. I am dreaming of the relationship I will never have with my father. I am dreaming of a different history.

I am a dreamer. I am a lover. I am an empath. I am just on the border of extroversion. I am a highly sensitive person. I love the smell of fire, the feel of the pages of a written-in journal, the smell of a bookstore. I love the way the sun feels on my skin, the way my heart feels when I am happy.

I love the way it feels when I have a good day, a rare, rare good day, when I can laugh along with my children. When I can hug my husband. When I can sit without pain, when I can sleep. I love the way it feels when I hear the perfect song to sum up my perfect day and I love when I hear the perfect song to sum up my awful day. I love the vision I have of a happy family, my happy family, except for the part that I am not in it.

I am dreaming of living.

Featured

A Quick Hello

Hey there. I’m Tristan. I am from the Berkshires in Western MA. I’ve heard it is a pretty remarkable place, but I haven’t traveled enough to fully agree. I know people have traveled far and wide and still, they have come back here, to the Berkshires. I will have to take their word for it.

I am a homeschooling mom to three beautiful and crazy children and am very passionate about radical homeschooling. Or eclectic homeschooling. Whatever kind of homeschooling we do, I dig it.

I love photography, the weather in the spring, and the way a cucumber tastes fresh from the garden with a sprinkle of salt. I’m a recovering ice cream addict. I love chocolate. I am a calligrapher, (wannabe) hand lettering artist, avid reader, and long time writer. When I was a little girl I dreamed of being a writer some day. I also dreamed of being a mother. I also loved letters. I loved typography. I loved letter forms. I would study packaging, newspapers, book covers, magazine covers, and anything else that had letters on it. I didn’t know what I was even looking at, truly, until a few years ago. I’m rambling; you’ll get used to that.

I suffer from chronic illness and some other things I am working to figure out. This makes it difficult, at times, to do the things that I love. I am trying to make room in my life to nurture these loves. This was born as part of that inner nurturing.

This blog will be about whatever I am holding in my heart and in my mind. It will be motherhood, homeschooling, things we love, chronic illness, and probably food. It will be real and it will be raw and it will be honest.

I hope you will hang out, for a while, and get to know me. If you relate or need a friend, feel free to reach out to me. I am always happy to talk.

Thank you and much love,

Tristan

Rebranding, Breaking, Living.

I have some things on my mind. Firstly, I am tired. I am tired of trying so hard to find time for all of the things I love; writing, lettering, calligraphy, photography. I am tired of posting in so many different places. To begin saving time, I am working through some ideas to make them all work together. I am pretty excited for the future of the blog and for my calligraphy and lettering business, Berkshire Love Letters.

While I have been thinking of how to make these things happen, the world has caught fire with hate. The state of racism in this country breaks my heart. I have been having many conversations with my children about white privilege, police brutality, how to find the helpers, how to be an ally, and the history of racism. These conversations are difficult to have with such young kids. There are lots of questions to be answered. There was a lot of confusion to clear up. They have been taught that humans are humans. The idea that someone could be hurt or killed because of the color of their skin hasn’t set well with them so I’ve been emotionally supporting them. While working on my unit here, I developed some insomnia because I couldn’t stop thinking. I couldn’t stop thinking about protests. I couldn’t stop thinking about the people who have lost their lives. I couldn’t stop thinking about the conversations the BIPOC communities must have with their children. I couldn’t stop thinking about how I feel so inadequate. I couldn’t stop thinking about how sad I am. How angry I am. So I stopped sleeping. Because of that, I have been not well. Having an autoimmune disease and chronic virus, adequate sleep is very important for not having flare ups. I deleted my social media apps from my phone and have checked out. Another aspect of white privilege is that I can do this. I felt guilty. I still feel guilty. But I have to prioritize my health or I am useless as a person and especially as mother. The world can’t change if we don’t start within our immediate families so that is where I am focusing my heart right now.

I haven’t written in over a month. I was so busy helping out a new friend with a very special project. At the end of May, he launched a beautiful community called The Feely Human Collective. I started working with him on small pieces of the project in March and all the free time I had was tied up in that. I really believe in this wonderful thing he has created and I highly recommend, if you are reading this, that you give it a gander. He has a free workshop on the foundations of Feely Human called Feely Human 101. It focuses on empathy, vulnerability, and emotional wayfinding. There has never been a more important time to take this workshop. The group is for so many people and the website is full of great information. If you are an HSP, an empath, or just live your life in kindness, it is for you. It is especially for you if you would like to better yourself.

Since the launch of Feely Human, I have been able to step back a little bit and with my break from social media I have spent a lot of time living. I have been trying to stay on top of chores, I have had more patience with the kids. The biggest project I have done is dig sod out of an area of our front yard where my butterfly garden will be. Each year, a large amount of milkweed grows. So I removed the sod around the milkweed that has already come up and we will be adding lots of flowers that attract pollinators. It is almost Monarch season and I am looking forward to raising and releasing even more than I did last year. My goal is 160. I may need to add more milkweed.

I am experiencing a terrible headache today due to an allergy attack. My nose is a faucet, my jaw and my teeth hurt, and I am ready to rip my head off. I have to keep on pushing forward so I figured I would take a minute to sit down and write this out. Because it has been a while. And I miss writing.

We are still here. Isolating. Staying put. Staying home even while things are slowly opening around us. No need to rush into something that we don’t need. We have our health now, we have food in the refrigerator, and we are fortunate to have a lot of room to explore. We will continue leading with our hearts, loving each other, and learning to be good people.

Illness & Disability During the Pandemic

Wow, has shit gotten real or what?

I haven’t written in a while because while the world has been battling this crazy virus, I have had some other battles to face. About a month and a half ago, I began my search for a new primary care provider that would work alongside my holistic providers. The first recommendation was a Nurse Practitioner who, I was told, seemed to be quite open to the holistic, more open minded approach to care. Upon our meeting she learned that my TSH (thyroid stimulating hormone) was low and had me decrease my thyroid dose. She said it indicated I was taking too much thyroid replacement. She decided she didn’t want to work with me in the end because I didn’t want to see an endocrinologist and she didn’t know what to do with Epstein Barr Virus. (I did find a doctor to work with eventually.)

It wasn’t even a few days after reducing my dose that I felt things had started to shift for the worst. I felt my mental health tanking. Everything I had been working so hard for had gone out the window. I could feel the inflammation creeping back in, the depression got so severe that I couldn’t manage to get out of bed when my husband was trying to leave for work one day and he had to stay home to take care of our kids. The worst part, though, was my impulse control was nonexistent, the uncontrollable rage had returned, and any tolerance of stress I had manage to build up was gone.

I am still not okay. Though I have changed nothing else other than reducing my dose for a single week, I have to find a way to crawl back out of the hole. I haven’t been writing, I have barely been reading. I haven’t been lettering or doing any calligraphy. My house is in a complete state of disarray because I had to choose feeding my children over everything else. I have not a single ounce of energy to do anything. I have been able to shower only every few days because it takes so much out of me, often I need to nap afterward.

While all of this is happening to me again, we are all also self isolating. People are in quarantine. Countries have stay at home orders, the US has states with stay at home orders but others haven’t followed suit. People are panicking and with that panic comes the need to control what we can control. This looks like toilet paper hoarding. This looks like hand sanitizer hoarding. This even looks like people not following stay at home advisories, putting so many other people at risk. They may not even realize that they are acting this way because they are scared.

There are many people in isolation, bored as fuck, complaining about how much weight they are going to gain, tackling so many projects it is hard to keep up, discussing how much they have been drinking. People who are wishing they had more hobbies than going out to eat. My theory is these people who have been busy for so long have no idea how to sit with their thoughts and feelings. It is scary to be isolated with your fears, your worries, your own demons knocking at the door. There is no option to run (unless you are actually running a safe distance away from other people). There are people stuck with abusers, people stuck without food to feed their children, without childcare when they need to continue work in essential fields. There are people battling addictions. There are people needing regular heath care they can no longer receive because the health care system is inundated with coronavirus cases. There are people wishing that isolation provided them the luxury of being bored, is what I’m saying, or the ability to not ration their food because they have lost their jobs, haven’t gotten a paycheck, and unemployment is so backed up they can’t get an answer about their eligibility.

For many of us, though, life has been mostly unchanged. Those with chronic illnesses and many other disabilities have been isolating for a long time. I have a chronic illness. One of my good friends has a brain injury. Some of my favorite people on Instagram have disabilities in which they need mobility devices that make it difficult for them to enter many businesses as they are not accessible. Suddenly, though, we all see how easy it is for people to be able to work from home. Suddenly, people see what isolation feels like, and able-bodied, healthy people are having a very difficult time with it.

I look like an able-bodied person. I look healthy. I have an average build, I am mobile. I function in society with a smile on my face. But I don’t believe that I could work now, even if I wasn’t choosing to stay home with my homeschooled kids. My health is on a roller coaster ride. Could I realistically hold down a job away from home? Absolutely not. I bring my kids to the library once a month (before pandemic). I bring my kids grocery shopping once a week (before pandemic). If I have any other commitments, I become so exhausted that I can not function. If I have a two appointments in a week, I can’t do a single other thing. I see people during this time of social distancing, going for hikes, doing so many activities with their kids, building shit, remodeling rooms in their houses, and it makes me long for a different life. It is triggering, for me, to see these people in temporary isolation doing all of the things that I can’t do any day, any month, any year.

We are living in a moment of history. But for some of us, it feels just like every other day, stuck at home, wishing we could do things that other people do as part of their normal lives. For some, it is fighting addiction. For some, it is avoiding domestic violence. For some, it is hiding from abusive parents. For some, it is being hungry. For some it is relapsing on recovery, mental illness winning during this time of high stress. This moment in history looks different for all of us in many ways, but for some of us, the only thing that has changed is that we are wearing masks to get groceries for our highly restrictive anti-inflammatory diets.

I hope that more companies will realize that people can work from home and be productive so those of us who are sick but not sick enough for disability have more options. I hope there is more emapthy for those who are chronically ill, disabled, or battling mental illness. I hope we come out of this with a greater, more supporting, loving community with less judgement and more understanding. We are all tied together now. We can continue to make changes toward living that is more inclusive to this rapidly changing world. For everyone. More sustainable lives for everyone.

Walking Alone

I have a hard time writing about my past. Not so much because it is difficult to talk about but because I feel that I am talking down on the people who raised me. It isn’t that. It is only my perception. The way I experienced the events as a highly sensitive person living in a life that didn’t support that.

I think many of us can relate, to a degree. It is difficult to write about things you don’t want your mom to read because none of us really want to upset our mothers. We certainly don’t want to write about our dads or our siblings in any way that puts them in a bad light. Especially when we are aware that their experience and their perception will be much different than our own.

Does that make any sense?

Long story short, when I was one year old, my mother left my alcoholic father. I never saw him after the age of two until much later in life. His story is a story for another time and one that I will share when I am ready. She remarried another man who I lovingly refer to as Dad. He raised me, he loved me as his own from day one, and he was always there for me while I was growing up. I have many childhood memories that are bright and happy because of him. He was also an alcoholic but he was there.

There was always a void, however, where my biological father wasn’t. I have tried filling that void in so many ways throughout the years and have still not succeed nor have I fully healed. I know this because of recent events.

My dad recently had a procedure done and it wasn’t exactly not a big deal. But nobody told me. Everyone knew about it but me. My brother, my sister, probably people outside of the family, they knew about it. But not one person thought to tell me.

It was a major trigger. This happened last week and I have not recovered from being left in the dark. It broke my heart and I felt so stupid for being upset over it that I cried in the shower so my husband wouldn’t see me. I didn’t know how to talk about it. It brought me back to the days of childhood when I always felt different, felt like an outsider, felt like I wasn’t welcome. I had a different last name than everyone in my household, I didn’t have a relationship with the man who was responsible for half of my DNA, and I always felt a little lost. I felt like I had to do more to fit in, to be part of the family.

A friend of mine texted me and asked me what was going on with my dad. I was confused because I didn’t know what the hell she was talking about. She told me she saw a picture of him on Snapchat in the hospital. I hadn’t heard anything so I figured it was just something routine that my sister had to drive him to and she was just trying to kill time, as we do.

I can’t help the way that I feel, like I am walking through this life alone, a little unhinged, untethered. I have always felt this way. Though I have my own family now, a husband and three children, I still feel that I am not part of it. I dissociate myself from so much of it, making myself lonely, sad, depressed. I find difficulty in being present. I am still trying to fill a void.

I have been searching for answers for so long. I used to look for them in the bottom of a bag of Smartfood, then in the bottom of a pint glass, then in the bottom of a pint of ice cream. In the empty wrapper of a chocolate bar. I looked for answers in the books I read. On the TV screen. I searched endlessly for answers to so many questions I had, questions that will never be answered.

I am searching for peace, now, and I have to walk alone to find it. I have to hold myself on this journey because I am the only one who has had my exact experience. I am learning how to live with unanswered questions, triggers from my past. I am healing my body and my mind.

Did the reality of not being told this news trigger me into a flare? Was it the stress from birthday party planning? Was it the recent change to my medication? Is it the endless tasks and the inability to keep up with them? Is it the lack of support with my kids? Is it that I am home with them? I am not sleeping enough? I am not eating something I should be? I am eating something I shouldn’t be?

The questions set me into a spiral of doom and it can take weeks to find my way out of it. I left the house tonight and told my husband to please not be mad at me. Please be understanding that this is what I need to do in this moment. I push him away so often that I am afraid someday he won’t come back. I push and push and push and then pull him back. Push and push and push and expect him to just be waiting for me on the other side. I don’t know how he can live like this, I truly don’t, and I live in constant fear that he will abandon me too. He will leave me in the dark, he will lie to me more than he probably already has to, he will start pushing me away too. He will walk away. He will tell me I am undeserving of love, I am ungrateful. He will tell me all the things I tell myself and then I will really break.

I go up and down up and down up and down like a goddamn rollercoaster. I run. I hide. I close the shutters and build up the walls. I sabotage all of the things that are good in my life. For what? What good does it do to act like this? I know in my heart that this is old pain coming up. The survival mode I have been in for so long, coming to the surface.

There is so much from my childhood that has hurt me and created pathways that I am trying to rewire. I am trying to unlearn and relearn and heal and grown and do all of it without talking about it too much because it is annoying, you know, to be a sick and hurting person. You have no choice but to go at it alone unless you are fortunate enough to find your tribe. I am slowly working on finding that tribe.

My dad is doing fine, thankfully, but is in the hospital with a small complication with medication.

He’s been keeping me updated this time around.

I Have Always Wanted to Live

I moved out of my parents’ house when I wasn’t quite 19 years old. It was February of 2005. I was going to school at the local community college with a full course load but also worked a full time job. After moving out, I couldn’t afford to do both so I dropped out and started working three jobs so I could afford my rent, utilities, car loan and insurance, and still have food to eat.

Today, 15 years later, I was standing in the kitchen of the home I share with my husband and our children, and I was suddenly back in the living room of my one bedroom apartment. The sun was coming into the windows, casting a warm glow on everything around me. I had a window cracked because the sun was warming up the inside too much. Something about the combination of that sunlight and the cool air triggered a moment begging to be remembered.

February days and warm sunshine and bright, blue skies and cool air coming through a cracked window make my soul awaken. I can feel it, stretching and shaking out after a long nap, like a cat who has been curled up in a blanket for hours and finally decides to exist again.

Sometimes I will miss that apartment for no reason other than it was the first thing that was my own. I did a lot of growing up there but also a lot of breaking too. I had my first away-from-my-parents relationship which is always a big deal. Because I didn’t go away to school, I wasn’t experiencing the same things so many of people I knew were experiencing. But I had my own place. And a boyfriend.

The boyfriend started staying with me pretty much constantly until he cheated on me. I think about that moment in time often and how things tend to play out. I ended up forgiving him and broke other hearts along the way but had it not been for that awful relationship I subjected myself to for years, I wouldn’t have met my husband. I mean, I probably would have met him because we had already crossed paths at my job but I wouldn’t have talked with him outside of that. Who knows, really.

I remember sitting at the table my aunt gave me. It was placed in front of a window with excellent lighting. I would sit there and play music on my stereo and write my heart out. Sometimes I would cry, sometimes I would laugh, sometimes my heart would feel so full I thought it would burst.

Some things don’t change, I guess. I am sitting at my desk in front of a window listening to music on Spotify. It is dark and there isn’t any light pouring in but during the daylight hours it is flooded in light. I love to write here, as I loved to write there, and before that I loved to write in my open window in my parents’ house.

Today I was feeling heavy with emotion, as I am sometimes, and the memories come like a flood. I was sitting on the couch, looking at my eldest child, thinking about how I had let them take him to the nursery the night he was born because that is what everyone told me to do. So I could sleep, of course, but a new mother doesn’t sleep after she has given birth. I didn’t sleep at all the first night any of my children were born. The other two I held all night. In the moment I realized I missed that with my first born child, my eyes welled with tears and I wanted to be taken back so I could do it over.

Sometimes I think about our getting another dog and how I wish I didn’t feel like I needed one so badly. It’s another living creature I am responsible for and I didn’t realize how much being allergic to my dogs is probably affecting my healing journey. But she hasn’t even been here for a year and I can’t let her go. I think about how my other dog should still be here, holding me up when I want to fall.

When the weekends start to get warmer, I think about those early days in childhood, walking home from the bus stop without a coat on. I remember staring out of the window of a classroom, longing to be anywhere but there. Sometimes, in these moments, I remember my best friends from childhood and the ups and downs we had. I don’t usually want to go back there, I can feel the pain I was in still. The smell of Smartfood can bring me back to when I would buy a family size bag and eat the entire thing, calling it my anti-depressants. I didn’t realize that was probably not really an okay thing to do. The smell of Subway will bring me back to when I had sleep overs at my best friend’s house and we would walk to get subs for dinner. White bread, turkey, lettuce, extra pickles, american cheese, lots of mayo, salt and pepper.

February 2005. I just gave my 18 year old self a hug and the tears are flowing. I can see how badly I wanted to be loved, how badly I wanted to be free of the heartache. I didn’t know why I was so sad all the time. I already had a headache for two years at that point. I was holding so much pain. I started drinking 7&7s occasionally. I liked to be drunk, to be free. It wasn’t for a few more years that I was drunk as often as I could be but I can see the pattern, now, looking back.

I was full of so much shame at being who I was, this person who was molded by things I’m not ready to talk about and things I’m not sure I will ever share here. But. I was full of shame, and full of sorrow, and full of questions. I had so many questions that nobody could answer for me. I can smell the air, I can taste the drink, I can feel the hurt, I can feel the confusion, I can feel the chaos. Fifteen years and some things have changed. My healing has begun. I have more self awareness and love. So much more love for the person I was all of those years ago. I can feel how much I needed love then.

I have pictures from 2005. Trees and horses, old barns and lakes. My sister. My brother. My family. Flowers. Life. I have pictures of so much life. I was unknowingly searching for life. I guess I have always wanted to live, after all.

Getting Funky

I don’t mean funky in a good way, I mean getting funky like the funk, the fog, the deep dark spiral is near. I can feel it coming on. I cling to the few days of normalcy I have just experienced before it comes back to plague me.

I know it is coming because pretty much everything sets me off and my intolerance is very evident to those around me. I hate myself these days while also trying to accept that this is not forever, that I will find answers, that I will function better than I have in the past. I know that this can be true while simultaneously hoping I get hit by a goddamn bus already.

I haven’t been sleeping in a bed. I have been sleeping on my couch for a month, maybe longer, maybe less, I’m not entirely sure because I can’t remember anything. The couch, for some reason, I tolerate better than a bed. Especially a bed in the room full of the humans I made and the one I chose. The bedroom full of breathing and coughing and snoring and teeth grinding and cats scratching and so much restlessness in one room.

We all share a room for many reasons. The biggest is because we only have one bedroom that is finished in our unfinished house. The second is because we have been cosleeping with our kids since our first was born almost eight years ago and it is a weird thing to transition away from so bedsharing has just become part of our life. Another reason is because everyone is terrified of the dark and honestly if we had a separate room there would inevitably be middle of the night wake ups and moving into different beds and snuggling and being present and honestly it is just easier to do from the same room where little movement is required.

But I have been sleeping on the couch to escape that situation and also because I tend to sleep better there. I can fall asleep quickly, I don’t wake up with as many crushing anxious thoughts. But the last few nights it has been dogs scratching and licking and panting and shaking and the moon is so fucking bright it is shining right in my fucking eyes and why the hell do I have to pee again why can’t I just close my eyes and find sleep for fucks sake?

But the couch is comforting in a way that a bed hasn’t been. First of all, I can’t go anywhere. I am confined to those two cushions with the back holding me close, making it impossible for me to flail around. I think that security keeps me in place, able to be more still which potentially leads to more restful sleep.

Don’t get me wrong, I am still not waking up rested. I start every day the same way I ended the day before; exhausted beyond belief. I start every day and end every day in a state of permanent exhaustion. Fatigue is a beast that I have not yet conquered with diet changes or supplements or any other suggestion that has been provided. Yes I am drinking enough water. No I am not doing yoga because it takes days to recover from a three minute walk. Yes I have tried melatonin, thanks.

I have tried to be patient with this journey but advocating for ones self is an entire job in itself. Oh, that’s another suggestion. Maybe I just need to get a job. Because going somewhere every day that isn’t my home where things are actually required of me is clearly the answer to all of my problems. Getting dressed and showering daily and getting kids ready and out of the house (and helping them transition to an entirely unknown atmosphere) and eating breakfast and taking all my medications and supplements and then being a subordinate to someone who doesn’t respect me or care that I am ill or care that I am tired all of the time and who gets sick of me calling in sounds wonderful and very healing. Back to what I was saying.

Healing feels like a full time job, especially when the help isn’t exactly helpful. For instance, I have been on this elimination diet for 70 days now. It was supposed to be 21 days but now it is 70 days because there are lots of layers of my internal hell. I don’t mind that it has been 70 days and I still don’t really feel better but I do mind that I don’t feel better generally speaking. It is kind of the pits. So I was curious, after all of this elimination and gut healing, what do my numbers look like? So I email one of my providers and ask to have some bloodwork done. I want to check the numbers of the Esptein Barr Virus coursing through my body as well as have a full thyroid panel done to see where my antibodies are at. Mostly I want to see if all this that I have been doing has had any affect at all on my immune system.

I didn’t hear back right away and I had an appointment with a new provider who was asking about something as well as a current provider who was asking about something related to the other something so I emailed her back and asked to have two more tests added. She said she already mailed the lab. Because obviously it would have been hugely inconvenient to print another slip and mail that but whatever, it wasn’t a priority so I let it go. I get the lab slip in the mail and it has the tests for the EBV but nothing else. I contact her again and tell her that they thyroid labs were missing from the slip so could she please send one for a full thyroid panel as well as the other two tests I was requesting. Well, I got that in the mail today and she included the two additional tests but didn’t come remotely close to doing a full thyroid panel.

So I emailed her. AGAIN. I haven’t heard back about this time but I am fuming. You deal with sick people every day. People who have given up hope anywhere else and are most likely paying money out of their limited funds to come see you. Paying money out of their pockets for your services. A simple thing, like having a lab slip sent for a round of bloodwork since it has been three months shouldn’t really require all of this attention, should it? No. It shouldn’t. It took time out of my day on multiple occasions and here I am, still talking about it. Because it pisses me the fuck off. I didn’t ask for something elaborate. It was simple. I don’t want to have to do all this extra work on top of the extra work on top of the regular duties of being a stay at home homeschooling mom and a wife and raising a zoo. I wanted something as simple as a lab slip that had the simple things I asked, the things we have been checking for over a year.

I am already heading toward darkness. I am suffocating. I am spiraling into the depths of depression. And this is not something that someone should have to deal with. And it pisses me off. People are sick because they don’t have the resources to get the help that will actually help them. Taking care of health is huge, finding answers is huge, living while being sick while trying to find answers and trying to heal and trying to raise a family is almost impossible.

If you are working in a medical field with people who are doing their best every day to just get out of couch (bed), maybe, just maybe you should not create an extra layer of work for them. Or be so nonchalant. Or not ever apologize. Because life is already hard enough when you are walking through waist deep mud with your eyes blindfolded and ear plugs in your ears and everyone abandoning you.

We really just want someone to count on. Stand in the waist deep mud and yell to one another about how much it sucks. How difficult it is to be alive sometimes and how it is heavy and lonely. Do simple things to help. Read a fucking email thoroughly and do the goddamn job. Send a text and ask how things are going and genuinely care. Offer help, if you can. Make time to spend with your sick friends. We are lonely and feel abandoned and isolated and depressed because it is a long journey and we know how difficult it is to be around us because it is all we can talk about but please make time for us.

Something happened today. I got a package in the mail that I wasn’t expecting. The other day I had posted in my Instagram stories how much I have been fighting with my Cricut because my mats are all very much not sticky anymore so none of the paper I use holds in place. It is very annoying. I had started taping the sheets down with washi tape. A friend that I have not met in real life sent me three new mats after seeing my story. She took the time out of her day to do something for me that she knew would be appreciated. I don’t think she knew I would cry but her kindness brought tears to my eyes immediately.

I’m not saying you should buy all your friends gifts, but just pay attention. If you don’t know how to help, ask. If you don’t want to help or are emotionally unavailable to help or are an empath and said friend drains the life out of you, be honest. It is better than being distant.

I may be heading to a dark place but I feel hopeful that these moments aren’t forever. Things are getting funky but they don’t need to stay that way. I’m clinging to the days that are getting longer with the anticipation that my support system will be available soon and these days of solitude will be coming to an end.

The Month of Love

From what I hear, February is the month of love. I guess Valentine’s Day and all.

Seven years ago, in February, I got engaged. We had a nine month old son and we were in the process of rebuilding our house. I had come over to the house with our son to check out the progress. He said he had to go grab a tool but I had a feeling he was not going to grab a tool. Something in his mannerisms gave him away. When he came back, sure enough, he dropped down on one knee and asked me to be his wife.

A year from that February, we brought home our daughter. She was born the last day of the month and arrived five days earlier than her due date. We had not yet gotten married but we were loving our life as parents. Having another baby brought us so much joy.

We finally got married, in February, on Leap Day, a couple months after our third child was born. We didn’t tell anyone. We stood in the same spot as where he proposed. Low key is an understatement. Our older two kids were playing on the couch and jumping on a small trampoline while the baby was in his swing. We didn’t even take a picture. I was wearing yoga pants and a T-shirt. It was very us.

I thought that time was one of the most difficult times in my life. We went from being a family unit of three to five in a few short years. We went from being a superstar team to losing ourselves in the throes of parenthood. There were job changes. We moved into our unfinished house. I got sick. Things were extremely stressful. Going from one child to two children and then to three was a huge undertaking, one I was not prepared for.

I thought things couldn’t have possibly been worse at the time we said “I do” but I was wrong. When our seven year anniversary of engagement popped up on my Facebook memories I texted my husband and said, “I bet you wish you could take back that question.”

I hold a lot of guilt over what our life looks like now. Neither of us signed up for the burdens of chronic illness. It started shortly after our daughter was born almost six years ago. In that time, things have been one challenge after the next. In the beginning, when we were trying to figure things out on our own, he did everything in his power to help me. He started working for himself and would take two days off during the week instead of the weekends so that he could help me with the kids gymnastics classes or so that we could do things as a family during the week when places weren’t so busy. So I could go grocery shopping. So I didn’t have to go five full days with him working. He would go in too late, feeling like he couldn’t leave me. I would text him expecting him to still be home on time because regardless of what time he left in the morning, I was still done at the same time of the day everyday, totally and completely spent. It caused a lot of issues with both our relationship and the business.

There have been therapists and doctors, all who said I was perfectly healthy. For five years. I was putting too much pressure on myself. I was a perfectionist. I just needed to go to bed at 9:00 and get up at 5:00 and start my day with yoga, feel the sun on my face, drink more water. We ended up going to couples counselor and she suggested I perhaps had PTSD. I went to yet another therapist who disagreed but still attempted to treat me as if I did.

All these years later, he is still here. I have literally and metaphorically pushed him. I have screamed at him. I have said hurtful things and hurtful things have been said back. Our relationship became something I never thought I would see it become; toxic. In the beginning we were so strong. We never fought. We listened to each other, wanted to spend time together, enjoyed our moments of quiet after our kids were born. But things just got so goddamn hard. It was a pissing match every single day. Who had it worse? The woman with the sudden symptoms that were plaguing her and was home with three kids or the man who had to deal with the backlash and got to leave for work everyday?

Every single day that goes by I know we are waking up and choosing to be here even though most days it feels like walking through a thick fog. We don’t see each other much anymore. But every now and then there is a glimpse of what used to be. I will laugh or he will smile, and it will be a reminder.

We have a long way to go to get back to our foundation. It won’t ever be the same of course, too many things have changed, but someday, maybe, it will resemble the healthy relationship that used to be. Our house will be one of laughter again instead of silence. Our children will feel love radiating from our pores. We will do things as a family again. We will live life together instead of living like ships passing in the night, or worse.

February is the month of love, so they say, but February has cost me so much. It is cold, overcast. It is the lowest moment of the year here, weather wise. It is a time of hibernation and reflection. I am learning to love myself, learning to find compassion for my husband, and healing my relationship with my children. February seems like a good month to start.

Boring Responsibilities

Please feed your rabbit.

“It’s sooooo boring! It is so boring to feed Emily.”

I know it is boring but when we have pets we need to take care of them. It is important to make sure our pets always have clean water available and plenty of food. It is boring but it is something we have to do.

“But I don’t want to do it. I am too tired to do it.”

And on and on and on it goes. For a long time, I took care of the bunny. Emily is a Holland Lop that we adopted from a shelter. Our neighbor and friend had a bunny that we would sometimes watch if she needed to go away. We fell in love with this rabbit and my daughter really wanted her own bunny.

What little girl doesn’t want a bunny? I always did. I can understand the desire. So we adopted one a couple weeks before my girl was set to have heart surgery. I was a ball of emotions then and she could have asked me for just about anything and I would have said yes.

Lately, every day has been a bit of a struggle to get her to take care of the bunny. We had helped a lot in the beginning because she was younger. She didn’t need to remember to feed an animal, that wasn’t something I expected of her. But now she is a little older and she knows it has to get done. Recently she seems completely uninterested in caring for her bunny. I will remind her, which is something I expect to have to do every day, and she will immediately start crying about how boring it is and how tired she is.

This morning I couldn’t take it anymore. I asked her some questions.

“Why do you like having Emily?”

“Do you think it’s fair that Emily can’t come out of her cage because you don’t watch her?”

“Do you think it’s fair that Emily can’t get her own food and water and has to wait for you to feed and water her?”

“Do you like to be hungry and thirsty? When you are hungry and thirsty can you get yourself something to eat or drink? Can Emily?”

There were a lot of tears. I suggested that perhaps Emily needs to go to a new home where she can be free of her cage and never have to be thirsty or hungry. Maybe Emily needs to go to someone who doesn’t think it is too boring to take care of her. We talked about responsibility and how it is important to do boring things sometimes. I said how boring it was for me to fold laundry but if I didn’t fold laundry we would always have to dig through a big pile to find a pair of underwear or a dish towel.

She really does love her bunny. She was beside herself when we were talking about rehoming her. I cried with her. I told her how sorry I was that we had to talk about making such a hard decision but that it was important that a pet we love is happy. I explained how many other things I have to do and that I am not willing to add her pet to my never ending list.

I don’t want to make her sad and I certainly don’t want to break her heart but I have to hold her to this. I have to stick to my boundaries. It isn’t like the bunny is our only pet. It isn’t like I don’t have three kids to take care of. The decision will ultimately be mine, but I will listen to her and empathize with her. I hope that we won’t have to find a new home for Em but my daughter will need to show that she really wants to keep her. She will have to work for it.

Even if it is boring.

On Being Tired

I try to take time on Sundays to rest. Having a chronic illness and post exertional malaise because of it can make even the simplest of existences exhausting. It is one of the symptoms that I despise the most and it often leaves me frustrated and angry. I feel unable to keep up with life almost constantly and that can really wear on a woman.

When I was younger, I remember being really tired, more tired than my friends. I didn’t understand why but thought how I was feeling wasn’t that bad. I don’t think I ever mentioned it to a doctor. It would probably be more mild if I didn’t have three kids to keep up with, like it was then. I think about that sometimes, my role of becoming a mother and how it has impacted my health. Of course there was no way to know that this would happen when making those decisions and now that we are here, there is only one direction to go; forward.

There are definite dips in my already limited energy for a few days every month. I have previously been diagnosed with PMDD but I’m not so sure anymore if that is an accurate diagnosis. Anyway, for those few days I can barely function, plagued with a fatigue that is absolutely debilitating. During this time it is especially important that I rest.

Of course, for me to be able to do that, I rely on my husband to pick up all of my duties. I am not always great at communicating my expectations with him. Okay, I am never great at communicating my expectations with him. I have been trying to finish a book and I had no plans of leaving the couch today. For the most part, I didn’t have to. He put our youngest down for a nap and then went to the basement to work on the ongoing organization that needs to happen down there as well as make a material list for the ongoing house projects we are trying to get ahead of.

I got irrationally angry when the other two kids were hungry and asking me for food. I had all these thoughts. I mean I would never go start working on something without making sure the kids had lunch first. I would never go outside and light a fire to burn some cardboard without telling him that’s what I was doing. I would never leave him hanging when I knew he wanted to rest.

Or would I? I have left him plenty of times. He pitches in a shit ton and rarely gets the acknowledgement he deserves. I was angry that he wasn’t tending to the kids and I had to get up from my spot of rest. I was angry that he had heated himself up soup before he said he was going to and ate it, but didn’t heat me up any even though I told him I wasn’t hungry. I was angry, ultimately, because he has more personal freedom than I do, even if he doesn’t realize it and may never realize it.

Even when he is home, the kids come to me first. I feel no amount of release with his presence, the amount of pressure is the same whether he is home or not. Even when I am trying to rest to prepare for a long week ahead, it is me the kids come to for every single thing. I know this is not uncommon, there are plenty of memes to tell me I am not alone, but when they walk past the person who was the second party involved in their creation to then come find me to ask me to get them a snack? I want to rip my hair out.

By Sunday, most weeks, I am a pressure cooker. He is gone twelve hours a day during the late fall through the early spring months. Then Saturday always feels busy. He has had a lot of side jobs he does on Saturdays or he tries to do something around the house. For six days a week it is, really, only me. It is fucking exhausting.

When you have fatigue and stress intolerance and a body who wants to do nothing but eat and sleep and die, even the smallest of tasks is huge. This coming week we have two appointments that I will need to bring all three kids to during my youngest child’s nap time. I am dreading it, already, because I know how much it will take out of me. The first appointment will leave me exhausted for at least a day. Then I will do it all over again a couple days later. These are things I really need to mentally prepare for. My husband? He does not need to mentally prepare to go to an appointment. He can just go. Hop in his van and drive to the appointment ten minutes before he needs to get there.

That is another piece of the freedom I envy. I accept that this is what I signed on for with kids and choosing to homeschool. I am having difficultly accepting the piece that is the illness I wasn’t anticipating that makes every simple task so much harder. I have to think days ahead of time to make sure I don’t do anything too strenuous. To make sure I have adequate rest and have had plenty of water. I have to prepare the day of the appointment to manage my stress so I am not tapped out by the time the appointment rolls around. I have to start getting everyone ready to leave an hour before the appointment. And I have to wrangle a hyperactive four year old and an angst almost six year old the entire time.

This is on my mind tonight, so I am writing about it because it feels heavy right now. I feel ashamed, at times, to be complaining about this. We have so much to be thankful for, truly. I don’t have to work because we can live off one income. My kids are (mostly) healthy. During the warm months I have more help than I know what to do with. It is just these dark, cold days that put me in a bad place, mentally. Physically.

Instead of taking a nap today, I went for a walk. My body wanted me to sleep but my brain really wanted fresh air. I needed to clear my head, knowing how irrational and irritable I was being. I grabbed my dog, put on the only boots that keep my feet warm, and headed out the back door to the property my in-laws own behind ours. There were animal tracks all over the place, none that I could positively identify other than a deer. I stopped to take photos along the way. It isn’t a long walk, maybe twenty minutes at my normal stride. I wasn’t more than halfway through it and felt like I should turn around. Instead, I pushed myself and just took it slow. The fresh air truly was just what I needed along with a break from the chaos.

When I came back in, my mood had turned around. I am more than exhausted now and my body is achy. I hope that I didn’t hinder my day tomorrow by going for a walk today. I feel sad that I can’t go for a short walk anymore without repercussions. I feel sad that the weekends is almost over and I was miserable for all of it. Tomorrow is a new day and I am hoping the fatigue will lift to my normal level before I wake in the morning.

I know this isn’t forever. I am going to heal and find something that helps. It has been such a long road that it feels like it is forever. I just need more time, more money, more resources. I need more patience and to practice acceptance. Every day I get a little better, my mind a little stronger. I hope that with time, I will be beyond this and my life will be mine again.

Feel the Chair Beneath You

It was a beautiful day today. The sun was amazing and felt so welcome on my skin. The kids would have only needed sweatshirts to stay warm but because of the snow they were in full gear. The snow had turned into perfect packing snow and they made pieces of a snowman. I stood back and watched them, listened to them, and thought of how amazing the warmth was.

It has been quite the day. I am weary. The day started with a certain four year old climbing the shelf in a cabinet to get onto the counter. The shelf pin gave out, the shelf fell and various bottles of oils and vinegars scattered on the floor. One of the bottles opened, sesame oil, and a puddle spread beneath the rest of the items. Sesame oil doesn’t smell great so then I also had three kids who were angry with the awful smell in the kitchen.

It took most of my energy today to just survive, is what I am saying. A neighbor texted, her kids had a half day of school, and asked if we would be heading outside in the afternoon. I had finally had a shower so I quickly got the kids in their snow clothes so we could head out. We all desperately needed a break from the indoors.

Things were okay for a while while we were outside but when we came back in things got sketchy again. It was one thing after another after another. I couldn’t catch my breath before something else was happening. These are the hardest days for me. I can’t tolerate stress. It takes me a really long time to recover from even a minor stress so a day that was a total shit storm leaves me feeling irritable and barely able to function.

My oldest had a really hard time tonight. He is my son through and through. He has inherited my anxiety, my stress, my worry. He was struggling with Minecraft. He loves to play and the app wasn’t working on his tablet. He was getting really worked up and I tried to help fix the problem. There was nothing on the internet I could find that would help us with this problem and the people I asked about it couldn’t help either. I eventually told him I needed to take a break and see what else I could find when his brother wasn’t terrorizing the house. He didn’t love that answer but he watched videos about Minecraft instead.

It was only better for a little while. He ended up getting really pissed off, like red in the face pissed off. I tried to help him, again, but he was so angry and frustrated he couldn’t speak to me in a way that I could understand him. I ended up taking his tablet away from him, realizing he really just needed a break.

He had a full blown anxiety attack that ended up lasting a couple of hours. As I am typing this, he is still experiencing a ton of anxiety but my husband has taken over because I am wiped out. He was hyperventilating, sobbing, saying words that were so garbled there was no way to identify them. It has been a long time since he has had one that bad and my heart was breaking for him.

Once we got past the tablet and Minecraft thing, it went to something else entirely. It isn’t uncommon for him, in that state, to start worrying about death. Not dying, exactly, but the fact that we die. He will cry about me dying, his dad dying, himself dying, his grandparents dying. But something else happened tonight. He was crying about the Earth dying. He wanted to know why humans do bad things to the Earth. He was angry.

There wasn’t much I could say to him that would help. He had questions that I couldn’t really answer. We circled back to his anxiety and how anxiety served a very important purpose a long time ago for our survival. I taught him some grounding exercises. We breathed together. We talked about how feelings can sometimes be scary. We talked about how anxiety affects me and how I work through it. We also talked about the importance of sleep.

Anyway. This was pretty long and rambling. I don’t even know what I am talking about at this point of the day. It is Friday. It has been a long and difficult week. Everyone has gone to bed and now it is my time to recharge, reset, and listen to some music that has my heart full.

I hope that if you are struggling with anxiety, you know that you aren’t alone. I hope that if you have a child struggling with anxiety, you know that you aren’t alone in that, either. Having anxiety and having a child suffering from anxiety can be a lot to handle at times. Sometimes the anxiety of the child can trigger something in the adult. Sometimes it does for me, as an empath and a highly sensitive person. Sometimes it is hard for me to be present with him through that but other times, like tonight, it comes more easily.

They just need to know we are there. We love them. They are safe. They are being held. They are being heard. They are being validated. They are being accepted. They are being cared for.

I hope that he sleeps well tonight and tomorrow we can start the day on a fresh foot. And, like he said tonight, he can feel better about living.

I’m So Glad I was Born

I think I am too tired to write this blog tonight.

I am trying to write every day or every other day. I am trying to write consistently so I can establish this habit of sitting at the computer once a day. I want words to come easier; my vocabulary is rusty after not being exercised in too long. I want to write a story for you.

A story about a girl who wishes she was never born. Not the stuff of happy endings, usually.

The story is about a girl who didn’t have a relationship her father, who grew up anyway. A story about things she isn’t ready to talk about and things that will take a long time to talk about and things like this. Things like this because she doesn’t know what to write and she is just trying to write something.

This story is full of heartache and sorrow. The end though, well, there is still a lot of heartache and sorrow, honestly. It never ends. That is the story. The heartache and sorrow never end and she still lives a long life wishing she was never born.

I think I will rewrite the ending.

I will write until she is happy, truly happy, for maybe the first time in her life. Joyous. Elated. LIVING. She will find what it means to be alive for the first time. Living for herself, for her family, for the people who need her, for the people who love her. She will allow herself to feel loved, to feel included, to only need validation from herself. She will keep breathing, she will keep living, and she will wake up and think, “I am so glad I was born.”