“We Did The Thing!” – Self Doubt and Self Care

I wrote the title for this blog enthusiastically and with happy tears in my eyes because I have recently experienced something I want to share with the world. Then, I stared at the screen, started typing, hit the backspace key, typed something else, and stared some more. The truth is that I don’t know how to talk about this in an articulate way. I have expressed parts of the feeling to individuals as I have deemed it necessary, but, ultimately, the emotion is too huge to pin down in a few words.

I am, however, going to try. I think it is necessary for me to talk about it as a human. I think it is necessary for me to talk about it as a woman. I think it is necessary for me to talk about it as an individual with autism. I think it is necessary for me to talk about it as an individual with chronic pain. I will do my best, and I will ramble, but I will be as sincere as I damned well can be.

I don’t trust easily. I’ve never had close humans whom I’ve felt I could tell anything to or whom I felt I could call if I needed support. I’ve never felt comfortable asking for help. I have always stringently avoided inconveniencing people. I have kept up appearances as much as I possibly can. I have forever tried my best to deal with me… myself.

Over the past few years, I have learned the importance of self care, the benefits of therapy, and how to speak to myself more positively. I had not learned, though, how to rely on others for support (or trust others to support) until two weeks ago.

I like to consider myself a fully-formed emotional being who is self-aware and capable of doing grown-up things. Unfortunately, life, which is complicated and often ugly, can sometimes smack a person around and you don’t always behave as gracefully as you should. Sometimes you break the fuck down. Sometimes the world ends. Sometimes things are just bad. Sometimes you end up in a parking lot somewhere and you don’t want to exist. Sometimes you are in such personal crisis that everything seems dark and dreary and hopeless.

It was in such a moment that I learned that other people are more than just social outlets. Apparently, and this is still new so bear with me, other people who are not family or in romantic relationships with me are capable of caring about me enough to want to help me. Other people do things like show up in parking lots with water and chocolate and hugs. Other people offer to meet for ice cream just to talk without wanting anything in return. Other people check in to see how things are. Other people offer beds and coffee and make dinner and out-of-season Christmas happen. Other people share their ups and downs and feel happy when they hear about ups and sad when they hear about downs in return.

These other people are called “friends.”

It isn’t as if I haven’t had friends all my life, but I don’t think I’ve allowed myself to have this level of friendship with other people before. I had to reach one of the lowest points in my life to finally be able to look up and see all of the hands being reached down to lift me up. And there were so many hands, and they all glowed with unconditional love and compassion.

This is where typing becomes tricky, for the tears, they are a’flowing. It has been a long thirty-five years of striving to feel accepted and loved for who I am by ME, let alone other people. I am trying very hard to let the love that I feel for humanity extend to myself. I know that I am a lovable, likable person. What I have never really believed or understood was that other people see me this way, and I am overwhelmed by how truly cared for and supported an uplifted I feel. I genuinely hope that other human beings have felt this feeling at some point in their lives. I want this feeling for everyone.

I am spending this week engaging in radical self care to eliminate some of the disquiet of self doubt that eats away at me moment by moment. I know that to move forward in a positive way with my life, my relationship with my self, and my relationship with others… I have to regain some of the self esteem that has been lost to years of pain.

I will leave you with this. One of my lovely friends, with whom I discuss aforementioned ups and downs and with whom I celebrate and commiserate, and I have a saying. It is silly and motivational and it puts our intention into the world:

“We did the thing!”

It means that what ever it is that we want or need to do is already done and we were successful. We aren’t going to do it. It is done. We aren’t doing it presently. It is done. We did the thing. The thing is accomplished. Wipe of the hands. Be it difficult and stressful or fun, we did it.

Whatever you have to do, it is already done. You did the thing. But you aren’t alone…

We did the thing.

My Perfectly Okay Codependent Relationship… with My Dog

Meet Oliver:

Terrible doggie

Oliver Wilkes Dogg (Puggle extraordinaire) is my non-human life partner and we have a codependent relationship. We are not ashamed. Oliver is the literal reason that I get out of bed in the morning (around 9 when he wants to go out after his post-breakfast nap.) Oliver is the reason I get exercise (because I have to race through the house telling him not to pee on something before I can get him outside.) Oliver is my napping buddy. Oliver is a source of joy and laughter and unconditional affection. Oliver is terrible in the best way.

Oliver eats our underwear. Oliver unabashedly goes to the bathroom as a means of punishing us for wrongs we don’t know we’ve committed. Oliver carries the skins of his stuffed animal victims around with him. Except Burnie, Oliver loves his dragon, Burnie, and has left him mainly intact.

Oliver eats like a goat… paper towels, tissues, any kind of food, plastic, money hair accessories, or bath accessories. You name it, Oliver has swallowed it whole and lived to tell the tale in the voice that we use to talk for him.

Oliver sleeps like this:

Sleeping terrible doggie

… especially when we’re upset with him.

Or like this:

Doggie tongue

… because he is a master manipulator and uses his powers of puppy-face against us so we don’t kill him.

Oliver is my best friend. When my head hurts, Oliver says, “Mama and I have a migraine,” and he curls up under the covers and naps all day with no complaints. When I’m upset, or having a really bad pain day, he puts himself across my body like a seat belt and keeps me warm and secure. He isn’t afraid of my meltdowns. He doesn’t mind that sometimes I’m not in the mood for his whimsy. He just carries on being whimsical at me until I am in the mood. He licks my feet when they are freezing. He gets his one kiss a day. Petting him makes me feel nice. I have trouble sleeping when he is elsewhere.

I have a codependent relationship with my dog, and that’s okay.

“How Are You?”

Being asked how I am is a difficult question to answer depending upon the person asking. If it’s an acquaintance, I typically say, “I’m hanging in there,” or “I’m living.” If it’s a closer friend, I might talk about whether I’m having a bad day or a worse day or if I’m feeling down about things.

If it’s my husband or my son, I might outright lie and say I’m fine.

It’s difficult to subject your family to your chronic pain condition day after day. Although I know that it’s not beneficial to anyone to hide my symptoms and try to power through, I also know how heart breaking it is to see how bummed out they are when I’m curled up in pain.

I spend far too much energy trying to act normal for my family so that they will act normal around me, and it’s counter-productive. What I really want is for my family to understand my condition and my medications and my pain levels and see what’s going on with me as a legitimate problem. Instead, this tendency I have to mask it so that they aren’t made uncomfortable blocks me from receiving a lot of the compassion that I need to get through.

Basically, my it’s an emotional nightmare in my home and I feel fully responsible. I know I’m not fully responsible, but I have guilt issues that cloud everything in a haze of, “IT IS YOUR FAULT! DON’T LET OTHERS TAKE RESPONSIBILITY!”

How am I? I hurt. A lot. With the exception of this past Friday, I haven’t been below an 8 on the pain scale in 8 months. I’m tired all of the time, and my new medication makes me go to sleep during the day. I have nightmares when I do sleep and wake up in pain. I dream about my pain. I’m constantly anxious and worried. I’m sad. I’m depressed. I cry daily because I hurt and because I’m tired and because I don’t want to be in pain anymore. I think a lot about how nice it would be to never wake up again. Right now, things are ugly in my house and I am very lonely. I’m trying to arrange time with friends to counter that, but I lack a lot of energy or desire to actually be around people. I feel trapped because it’s become very difficult to drive. I feel trapped because my marriage is strained and I don’t know how to fix it or if it can be fixed. I feel trapped because I spend most of my time in my bedroom.

I know that feeling trapped is a symptom of depression. One-sidedness is a symptom of depression. Everything is a symptom of depression.

How I am is not good. How I am is trying really hard and failing. How I am is distraught.

I talked to my son yesterday about his perception of what I’m going through. He just came back from a road trip with another family and he said it was so weird to do things. They just did stuff, like normal people. We don’t do things as a family. He said they didn’t argue, they just did things and had fun. I told him that sounded nice. He says he understands what’s wrong with me, but that he hopes they find a way to fix me soon so that I don’t have to hurt so much and so that my husband and I will fight less.

It breaks my heart that I can’t give him great family experiences and that the thing he thinks about when he thinks about his family is that his mother is in pain and his parents argue.

How do I make things better? I really have no clue. I keep trying all of the tips and tricks I read about in books and online. I’m so overwhelmed and exhausted and I feel so persona non grata in my own home.

MBHM Monster Brain Shirt

My son just got back from a three week jaunt across the US. We spent the evening around the fire pit, and then he wanted to take a real shower. After weeks of camp site showers, I don’t blame him. When he came out, he was wearing his MONSTER BRAIN tee! It’s so nice to have him home. it’s been lonely around the house during the day. My dog doesn’t talk back (much.)

You can get your own MONSTER BRAIN tee here! 

Enjoy the day!

The Abyss Looks Back Into Me

There is this metaphorical canyon that I stand on the edge of when I’m depressed. It’s that feeling, you know the feeling, where you’re way up high and for some reason you just want to jump. But you don’t really want to jump. And, goodness, you’re terrified of falling. Yet something in you wants to take a step, bend at the knees, and push off and fly.

You just want to fly.

I refer to that feeling as escape. Escape, freedom… it’s all the same. It feels like weightlessness. It feels like driving somewhere without a plan. Just driving in your car with your phone turned off. No one can get to you and you’re free of all responsibilities. You can’t pay bills in a car. You can’t fight with your spouse because they aren’t in the car. You’re flying in your little capsule of freedom down the highway toward the rocky floor of the canyon. You’ll hit eventually… but for that time between jumping/pulling out of the driveway and hitting the ground…

You’re free.

You’re free and you’re not sad and you just are. You can be an entirely different person.

Photo Courtesy of Silver Hammer Lightgraph feat My Brain Hates Me (c)2010

Photo Courtesy of Silver Hammer Lightgraph feat My Brain Hates Me (c)2010

However, I’m not talking about flying or freedom. I’m talking about escapism and we all know it. Any shrink will tell you that this is all classic escapism. My suicidal thoughts are escapist. My constant fleeing to my girl cave is escapist. My immersions into shows on Netflix are escapist.

The bottom line is that I don’t want to be here, or anywhere. I don’t feel like I have family who knows me or cares about me. But then it’s not as if I reach out to them. I’ve successfully honed my mother’s skill for alienating everyone around me. It’s not as if my son, in his throws of teenaged-hormonal chaos can express genuine affection for me for more than a few fleeting moments. And my spouse, well. He likes me when things are going well. The problem is that clinical depression isn’t conducive to things going well. And the less I feel like he likes me, the more depressed I get. Then the worse we get along.

Therefore the desire to jump is strong. If I just left and became someone else for a few days and sat on a beach in dark glasses and a sarong and 8 layers of other clothing to protect my sun-sensitive everything…

I’m sorry I’m not uplifting today. Sometimes I feel like it’s more important to be honest than uplifting. I think it’s normal to want to be elsewhere. I think that’s truly what my suicidal thoughts are about… I just don’t want to exist as things are. I want to have another existence where people like me and where I feel happy and I don’t hurt.

Although, I’ll still back away from the edge and sit.

Living Around Pain

My son is about to leave for his busy summer of camps, mountains, and road trips. All together, he will be gone for six weeks, so we really wanted to make these past few days special. We made family plans to go to dinner and then go do something fun Friday night. Today, Saturday, we planned to run errands separately and relax before a long drive tomorrow.

My brain had other ideas. Friday was a level 10 pain day. Today hasn’t been much better.

I’ve been in the 8-10 pain range solidly for the past 6 months. I’m more than used to moving things around on the calendar because getting out of bed isn’t an option from one day to the next. However, I really wanted to spend some enjoyable quality time with the boy.

Rescheduling and cancelling plans is always disheartening. I cry a little nearly every time. It alienates friends and family, and, honestly, for long stretches of time it even feels easier to avoid making plans at all. I always hurt. It’s just a given these days. I do my best to hide it when I can get out and pretend to be human, but I spend most of every day in bed dreading the preparation it takes to put my human mask on. Letting the pain “win” isn’t a way to live, however.

Friday night my husband made frozen pizza for us for dinner and I did a DHE injection. Today, a level 8 day, we beat the pain by finishing up my son’s camp shopping as a family. Then, instead of going to a special dinner out somewhere, we got take out. We also got toppings and ice cream to make sundaes and watched a television show we always watch together. Dinner and dessert at home is much less impact on me, and we still spent some good time together.

I could have spent the weekend being bummed about how much I hurt and how it took my time away from us… but instead we took the time back and made the most of it.

And that is how you live around pain…

… you make the most of it.

Bedrest, Head Rest

There have been lots of doggy and husband and son cuddles the past two days and it has been so wonderful. The past week was ever so hectic and overstimulating… and there is nothing better than a quilt covered by a fluffy comforter.

The Good Captain got me a Roku for Christmas so I may watch Netflix on the television in our bedroom, rather than on my laptop. It even has a little thingy into which one can plug headphones! It was ever so thoughtful.

The New Year is around the corner. I’m hoping 2015 will bring a happy cure for what ails me.

Thankful, Just Like Everyone Else

It’s one of those days where everyone says what they’re thankful for. Everyone looks around and evaluates their lives, and the people in them, stops, and says, “I’m very blessed.” Or, “I’m missing something.” Either way… it’s a day (in America) of retrospection.

I am very fond of holidays, and that fondness can cause me to be pretty intense and to have high expectations that can be dashed. Holidays frequently go wrong around here because I get weird. It’s tough living in pain and not being able to do the things I want to do.

I am thankful that Thanksgiving, 2014 was a success. I am thankful that I got to see my step-dad and not just talk to him on the phone. I am thankful that there are so many leftovers that we are going to be sick of Thanksgiving food because I’m insane and made way too much food. I am thankful for help when help is unexpected. I am thankful that the Help My Brain Hate Me Less campaign has raised $2340.00 of the $15,000.00 we need to deal with the ghosts of medical past, present, and future.

I am thankful for the Oxford comma.

I am thankful for my grumpy teenage son, who has his moments of sweet childishness, especially when there may be snow.

I am especially thankful for my husband. My husband not only got me through a panic attack of sorts yesterday in which I actually fussed at him for not reading my mind, but cut potatoes like a champ and washed a million dishes.

My husband is the light of my life. No matter what, I know he’s there.

That’s pretty cool.

Crying

Crying is the body’s way to relieve stress during times of anxiety. When I go through periods when I feel like I have to cry all of the time it means that I’m experiencing a lot of pain, and then stress and anxiety resulting from that pain.

The past several days have been very difficult. I don’t want to describe it as depression because it feels different than that. “Despair” is far more appropriate. I have had to cancel plans, beg off of events, and miss out on important milestones in my son’s life over the past two years because of my neurological condition, and in the past four days I’ve missed out on all of those things. It’s like an amplified level of guilt and distress over the burden that I am on my family.

Today, my husband went into our bedroom to take a nap and I was concerned that he was upset with me over all of the crying and general level of neediness I’ve exhibited all weekend. He simply asked if he could take some time to rest without having to pet or coddle me. This made me feel infinitely worse.

No, I’m not a burden, and no, my husband isn’t exasperated by my current emotional state. Yes, I’m in a bad place. Yes, it is fueled by worry that I won’t be able to do very much, if anything at all, for Thanksgiving for my family. Yes, my emotional… aura… or atmosphere… or whatever… negatively influences my husband’s mood and exhausts him emotionally. Yes, we as a family are still learning to take care of one another.

I let him sleep. I cried more. I clung to an ice pack for a while.

We ate dinner.

I’ll cry more and eventually sleep and hopefully this feeling will go away tomorrow.

Crying is the body’s way to relieve stress during times of anxiety.  It is better to let the body cry than to try to hold it in.

It’s only been three days. Perhaps, I’m not really letting go yet.

A Conversation with My Son

My son sat down with me in the Girl Cave for a chat about life.

Depressive Valley

This evening I said I was done.

My son is a teenager and therefore hates the world, being at home, and his jerk parents who make him do homework.

My husband is incredibly stressed and going through an emotional recovery and is depressed but doesn’t believe in talking about his feelings, so I don’t know how to communicate with him about my feelings on the same issues.

I threw up my hands in frustration, stormed into my bedroom, and slammed the door. Our bedroom door, which I have already broken. I’m at a 9 today. I’ve little tolerance for people who can’t communicate or listen or do anything on my terms at the moment.

My husband chased me down and said something that put blame on me in some way and I collapsed inward and all of the suicidal thoughts that have been swirling around came swooping in as if they had been waiting for their chance. It was literally as if I’d been an injured animal and suddenly my legs had given out.

I work very hard to keep those moments contained to my lonely hours at night when the family is sleeping and I can use music and silly television and other distractions to calm myself down. My husband doesn’t understand how I go from sobbing to entirely calm. Hyper-rationality, that’s what I call it. It’s the calm, chemically-induced quasi-sanity that makes me think that killing myself is a perfectly reasonable thing to do.

He suggested I call my therapist.

And say what? Honestly, I’m so used to battling the chemical reaction that happens when I get like this on my own that it felt intrusive to have him present. The thought of having a nice chat on the phone felt like it would make me worse.

I’m fine now. Well, I’m not fine. I know I’m not fine. I’m in such great pain and so very worried about money. But I am not a danger to myself.

I just need to win the lottery so we don’t have financial stress. Simple.

Bag Pipes and Foxes

I’m drinking a cup of coffee, which isn’t very good for me… but the caffeine contained within will possibly help me face the day.

Today, we’re going to a Celtic Festival and Highland Games.

There will be bag pipes.

My thoughts exactly.

My family tries to go every year. We can’t really afford it, however I found half priced tickets and a deal where convincing other people to purchase tickets through my particular link allowed my tickets to be free… so we’re going. With my dark glasses and my green silk parasol and my SPF 5 million… we’re going.

After that?

Halloween party. I’m dressing up as a fox. I have an ear, tail, an orange shirt dress I bought from Macy’s years ago to support my fave roller derby team, and mad makeup skills.

Problem? How many spoons will I have after the Celtic Festival?

Answer? LESS THAN ZERO.

Will I still go? But it’s a Halloween party and I love Halloween and I want to do Halloween things after not having done them for two years.

Logic? LESS THAN ZERO.

 

Basically, today is not a day of self-care. Today is a day of stupid self-sacrifice because it’s been a shitty week and I believe I have to do something fun to counteract all of the suck. This is me being medically irresponsible.

I’m allowed. I know I’ll hurt. I know I’ll have to leave early and sit down a lot and be a general drag.

It’s 12:41 PM. I am going to bathe now. My pain is level 8. I just ate rice crispies with almond milk so that I may take pain medication. I wonder if they have wheelchairs at the Celtic Festival. OOOOOO…

 

This is the dumbest plan for a day ever.

Do you ever plan dumb, fun days that you know are bad ideas but you just go for it anyway?

Loud, Breaky Things

I opened a cabinet and something came at me and shattered into a million pieces. I screamed, grabbed the refrigerator door handle and froze, crying and shaking, then realized I was surrounded by glass. I remember saying I couldn’t move. I remember my husband moving around me. I remember squeezing my eyes shut and my heart pounding. I remember being very very worried about my dogs and asking my son to put them in the living room.

I couldn’t move at all. My face stung from the salt of the tears rolling down my cheeks. My legs and arms cramped from the strain of my body insisting it had to just… stay. And the sweat.

That’s something that I’ve only noticed recently, but I am certain has been an issue all my life. When these things happen. When I have some kind of adrenaline-driven response… I sweat. And it’s not the pretty, girly, glowy sweat like actresses get in action movies. It’s the stench of fear wafting from every pore on my body.

Frozen, in the way of my husband who was trying to clean up shards of what turned out to be a broken measuring cup that had fallen from the top shelf of the cabinet when I opened it, stinking, and cramping. Oh, and crying.

While all of this was going on my husband was trying to quickly clean around me so he could leave to take my son to a lesson on time,  and had no idea how to help me act like a normal human being. I should say at this point that the kitchen is clean and glass-shard-free. The dogs are roaming about freely. I am unglued and have showered, therefore less stinky. My arms and legs, although sore, are no longer cramping. So everything is all clear in the household. We’re all fine. No worries. Except…

My husband didn’t know how to help me act like a normal human being. This isn’t something new. This is something of an issue we’re having and have had and will continue to have. It is difficult to live with a spouse who has things like autistic tantrums and meltdowns, and it is difficult to live with a spouse who has a chronic pain disorder, and it is difficult to live with a spouse coping with depression. My husband deals with all three of these things every day, non-stop, 24-7 on top of whatever issues he has going on internally and externally and the basic pressures of life. His general helplessness when it comes to my meltdowns is something of a conundrum and it’s been very prevalent of late because I had a rash of meltdowns recently.

Mind you, I have this theory that there is a way to 1. prevent me from melting down in the first place and barring that 2. talk/ soothe me down from a meltdown once there or at least 3. shorten the duration/ lessen the damage or the toll the meltdown takes on me in some way shape or form if it gets that far. I believe it’s a group effort sort of endeavor, and that if we all work together we can have a harmonious household where I’m not bat shit crazy all of the time.

Therefore, after he left to take my son to his lesson. I took a long hot shower. While in the shower washing off my fear-stench I had this revelation: I couldn’t let go of the refrigerator door because I was afraid and felt helpless and I didn’t know what to do or how to fix it. My husband cleaned up the glass because he was afraid and felt helpless and didn’t know what to do or how to fix it. He knew how to clean up the glass, so he did.

I’ve been worse lately and I attribute it to high amounts of stress and higher levels of Mexiletine. The house has been a hot spot of negativity and snipping and arguments and we’ve had several bad things happen and did I mention I’m stressed and I hurt all the time?

I’m trying to come up with a way to help my husband cope with my meltdowns. I want to say, “There are tons of articles on the internet, perhaps you could read some of them.” But that makes me feel bitchy and like I’m taking my problem and putting it in his lap. But it is really our problem. I want to help him deal with me. I don’t know how to go about it effectively, and I’m fuck all at saying these things to him in person so I’m going to   have him read this blog entry. Perhaps he’ll have some suggestion, or perhaps he will embark on some research of his own while I’m busy with school work. My fear is that he is going to respond by saying, “Perhaps instead of the Angel marathon you could have looked for some solutions to our communications problems since it’s obviously weighing heavy on your mind.”

It is weighing heavy on my mind, and I do want to fix it. But I’ve also been in a great deal of pain for the past few days and I have been trying to keep things as low-stress as possible. Tonight I have to focus on school-work and avoid being distracted by things that cause intense emotional responses. My worries about how he reacts to my freakishness cause me a great deal of distress that I have trouble articulating vocally.

We’ll just see how things go. Everything can wait until tomorrow. For now… relaxation, scented candles, and a little homework… then sleep I think. I’m exhausted. That stupid measuring cup wore me out.

“I Didn’t Do Anything Wrong”

This interaction just occurred in my bedroom:

Me: (freaking out because ordering medication online led to possibly going without clonazepam until Friday, and the fact that I have an e-mail from my university asking me to call about a math assessment I failed and am trying to appeal from an hour ago) *makes every effort to listen to words that husband is saying but knows she is failing, and why is he being really loud and shrill at some points?*

Husband: *Is talking about how every girl he hated in high school or liked in high school (I can’t recall) goes , “OOO! It’s SNOWING!!!” at the first one or two snow flakes we get.*

Me: *waits to talk because I HAVE to tell him NOW about me not having my anti-anxiety medication/sleep medication that he said he would pick up for me this evening until Friday*

Husband: …”something something-”

Me: “I don’t know why, but because they have to request refills of some of my medications the date for all of my refills is Friday which means I won’t have any Clonazepam until Friday. I am out.”

Him: *rationally, calmly* “Can you call them?”

Me: *panicked* “I don’t need to do that. I can just go without it. I have to call the math line right now to talk about my assessment. I can’t worry about that right now.”

Him: *rationally, calmly* “Well if it’s something you need…”

Me: “I can just double up on my Propanolol. Remember, they double-filled it last time?”

Him: *blankly, still calmly* “No, I don’t remember.”

Me: “They gave me two bottles of the same medication with all of the same dates and refill numbers on them?”

Him: “I don’t remember. I’m sorry.”

Me: “I’m sorry. I didn’t do anything wrong.”

Him: “Why is that your default lately? Why do you tell me you didn’t do anything wrong?”

Good question. The short answer is that I feel terribly guilty about everything and I have to tell myself that I am not making other people angry with my behaviour until they tell me otherwise. I have to say, “I didn’t do anything wrong,” so that I won’t cry and feel like I did do something wrong.

I hadn’t really thought about it until he asked me. It’s good that he asks questions.

Why My Son is Awesome

When I was sad he drew a penguin and sent it to me in a Facebook message:

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