“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.

6 Things Every Chronic Pain Sufferer Wants to Hear

WordItOut-word-cloud-1097862Living with chronic pain takes a major toll on a sufferer’s personal life. Friends, family, and other kinds of social support are vital to the quality of our lives. Cancelled plans, physical limitations, undone chores, and feeling like a guinea pig are all pretty depressing. But the one thing that can instantly make us feel better is compassion from another human being.

If you know someone with chronic pain, there are simple ways to show them that you care and that you are there for them. Here are six things that anyone with chronic pain would love to hear.

  1. “I believe you.” Chronic pain sufferers have weird stuff wrong with our bodies and it hurts. We’re human beings in pain. Having friends and family tell us that they believe us is the most supportive thing we could ever hear.
  2. “Rescheduling is absolutely okay!” When plans have to be cancelled because someone isn’t feeling well, that person feels guilty. Chronic pain sufferers live with an indescribable amount of guilt, and when that pain affects someone else in a negative way, that guilt cranks up to 11. Telling us that it’s okay that we have to reschedule plans makes us feel like our condition has less of an impact on your life.
  3. “Let’s hang out at your place this time.” Bathing, medicating, getting dressed, and attempting to look human are exhausting enough… and then we have to leave the house! Bars, the movies, restaurants, and parties can have elements that make our condition worse. Take the pressure off by planning a quiet evening at our place. Pajamas and movies? YES PLEASE!
  4. “I have some free time this week and I’d like to help you with shopping/ laundry/ cooking/ chores.” Getting things done can be tough when we hurt! Think about a time you had a cold. Did you accomplish much during that time? Chronic pain sufferers face many challenges that can prevent us from doing the most basic of chores. We probably won’t ask for help, but if you’re offering…
  5. “It’s not your fault.” Did I mention our guilt? Many chronic pain sufferers attend therapy to cope with the negative feelings surrounding our conditions. But the feeling that our condition rules our lives, and the lives of those closest to us never really goes away. Reassure us but reminding us that you know we didn’t choose the pain and we don’t deserve the pain. 
  6. “You are not a burden.” Being the friend or family member of someone with chronic pain may mean that you’re pulling double duty in many areas of your life to help us with ours. We know that we’re a lot of work, but we constantly worry that we’re resented. Reminding us that you do things because you love us goes a long way towards helping us feel less like a weight on your shoulders.

Lights Out, MONSTER BRAIN Shirts!

Lights Out, MONSTER BRAIN Tee

You’ve been asking for them, now they’re here! Get the new Lights Out, MONSTER BRAIN tee, tank, or hoodie now available in BLACK. This shirt is dedicated to all of the light-sensitive chronic pain sufferers. But you don’t have to have a neurological condition, migraines, or psychological distress to buy a shirt, this design looks great on everyone!

Support My Brain Hates Me and help my brain hate me less. Get yours today! 

Adults with ASD and Death: Mourning and Mornings Aren’t Easy

MBHM with mother, Beth, in 2003

My Brain Hates Me with her mother, Beth, in 2003

Growing up on the spectrum but being undiagnosed was difficult enough. I’ve experienced a lot of deaths along the way in the up-close, gut-wrenching way that some people do. Death is a part of life, but I’ve never known how to grieve. Whether this is an ASD characteristic, a failing on my parent’s part (which is doubtful because society is really uncomfortable with death as a natural process), or merely something that we as humans have lost the ability to do is unknown.

A friend of mine lost her mother in a way that is heartbreakingly similar to the way that I lost my own. The difference is that my mother claims to have been ready and her mother still had some fight in her. Sometimes fight isn’t enough to tip the scales and God, or science, or what or whomever, does what they are going to do. It’s tragic and I am incredibly sorry for her family.

Of course, those feelings about my mother in her final months are flooding in, and the feeling of fresh grief is flooding in, and it’s taking a long time for me to process all of it. I feel a bit frozen by it. Overwhelmed.

Autism in Adults is Still Talked About More By Adults with Autism than by Professionals

This morning, I took to the internet (as I do) to find some articles on adults with ASD and how they grieve. It came as no surprise that most of the information was written about how to handle children with ASD who are dealing with a death in the family and that the rest of the information were scattered personal accounts. Even Psychology Today has a personal account, albeit from one of the most respected autistic people in the nation, Lynne Soraya.

The trend that I see among personal accounts, and that I have felt during situations in which I have had to handle my own grief, is fear of doing it wrong. As an adult with autism, I understand that there are rules and social graces and expectations, but I don’t always know what they are or why they are, so I’m not always certain when it’s okay to break them. My husband is good at telling me when I don’t need to worry about other people and when I do. My mother’s funeral was a good example of when he told me I shouldn’t have to worry about other people.

Adults with Autism Feel Like They Are Doing It Wrong

His mother’s funeral was an example of when I did have to worry about other people and how I acted. My grandparents’ funerals were the same. I had to be on my best behaviour because those deaths weren’t about me. They were about other people losing friends and parents. But it’s very confusing.

I know how funerals are supposed to happen in my family. You have a wake, you have food, you dress up and Southern women tell inappropriate jokes while sipping sherry and eating little ham biscuits, then you have the funeral. Occasionally, I sing something. You don’t cry unless you are also telling a funny story about the deceased. There are always funny stories about the deceased. Always.

Growing up, I never saw adults cry at the funerals I attended. I saw people be quiet. I saw them look sad. Maybe I just didn’t look hard enough because I was so distracted by everything else that was going on. There were pretty dresses and suits. Lovely grass. I got to dress up.

I don’t remember if my mother cried at the funeral for my twin brothers.

So when my mother died and I cried at her grave side and I couldn’t stop crying… I felt like I was doing something wrong. When people came over to my house after for wine and little sandwiches, it had to be perfect because that’s what you do. You give people wine and little sandwiches. I was so worried about doing it right so that everyone thought that I was good at funerals and grieving properly.

That’s all that I thought grief was.

When everyone left the house, I thought that I would feel better. I thought that I wouldn’t feel sad anymore.

But I, and all of my grief, were still there the next morning when I woke up. I had no model for that. Because I grew up in a family that suppressed emotions and went on about their business, I didn’t see people being sad. I didn’t connect my mother’s drinking with sadness. I didn’t understand any of it at all.

Without those models, I had nothing TO model. I had thrown the perfect funeral… and then I didn’t know how to grieve for my own mother.

Society’s Tendency to Sugar Coat Death is a Detriment for Adults & Children with ASD

In December of 2013, about 4 months after my mother’s death, I wrote something about not understanding what was happening to me. I didn’t understand why I would suddenly cry over nothing or just stand in my kitchen for half an hour. I turned to “Buffy the Vampire Slayer” for that. I wrote a blog called, “Buffy Terms” because that’s how I started to explain grief to myself.

Weirdly enough, on this, the day after my friend’s mother’s death, I am having a “Buffy” marathon at my house with two other friends. We plan to watch “The Body,” which is the episode in which Buffy’s mother dies. Buffy’s mom dies. My mom died. My friend’s mom died. People just die.

Whether you have ASD or not. I don’t think any of us really know how to handle that well. But I think that there needs to be more literature out there for people who are adults on the spectrum, because we don’t know what to do and we feel like we’re getting grief wrong.

There is no way to get grief wrong.

“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.

Suicide, Depression, T-Shirts, & Deadly Rashes with My Brain Hates Me

Power of Pain Foundation

Donate to http://powerofpain.org/ or become a delegate yourself by clicking here: http://powerofpain.org/delegates-of-popf/

Suicide & Depression Hotlines

United States Hotlines

Depression Hotline: 1-630-482-9696

Suicide Hotline: 1-800-784-8433 FREE

LifeLine: 1-800-273-8255 FREE

Trevor Project: 1-866-488-7386 FREE

Sexuality Support: 1-800-246-7743 FREE

Eating Disorders Hotline: 1-847-831-3438

Rape and Sexual Assault: 1-800-656-4673 FREE

Grief Support: 1-650-321-5272

Runaway: 1-800-843-5200 FREE, 1-800-843-5678 FREE, 1-800-621-4000 FREE

Exhale: After Abortion Hotline/Pro-Voice: 1-866-439-4253 FREE

National Alliance on Mental Illness www.nami.org

American Foundation for Suicide Prevention www.afsp.org

SAVE www.save.org

International Bipolar Foundation www.ibpf.org

No Stigmas www.nostigmas.org

Active Minds www.activeminds.org

My Brain Hates Me Stuff!

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or Lights Out, MONSTER BRAIN shirt https://represent.com/monsterbrainlightsout

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!

Happy Painiversary, My Brain Hates Me!

MBHMlogo

Happy 3rd Painiversary, My Brain Hates Me!

In 2012, something started going wrong with my head. On August 7th, 2012, after my first productive and full day of work in a long while, I went home, sat down in my kitchen, and my head started hurting again. It never stopped. That day was both the last day I remember feeling good, and the beginning of my Monster Migraine.

It’s been a long, depressing, painful, maddening three years. There’s nothing happy about living with chronic pain. There’s nothing fun about being buried under tons of medical debt. There is no reason to celebrate today.

However, I’m alive. I’m alive and you’re reading this. Maybe your body has betrayed you in some way. Maybe someone you know lives with pain. Maybe someone you know thinks a little differently. Maybe you think a little differently. You’re alive too. We’re getting through the day.

This isn’t a joyous day for me, but it’s also not the end of the world. I live in the 8-10 pain range. all of the damned time. Yesterday, I had Botox treatment and a lot of new things were discussed at my appointment. I sleep sporadically. I’m grumpy frequently. I’m pretty darn depressed. I do have a family that loves me, though, and a ridiculous dog, and a roof over my head. Things could always be worse.

Therefore, on this day of sarcastic remembrance, I shall embrace the fact that I have grown as a person because of my pain and that I have accomplished some good things because of my pain, and that not everything is horrible.

Thank you for reading over the past few years, and for continuing to read in the years to come. You’re rad, and don’t let anyone tell you otherwise.

Love Your Friendly Neighborhood Pain Grump,

My Brain Hates Me

Lights Out, MONSTER BRAIN Shirts Now Available!

Lights Out, MONSTER BRAIN Tee

You’ve been asking for them, now they’re here! Get the new Lights Out, MONSTER BRAIN tee, tank, or hoodie now available in BLACK. This shirt is dedicated to all of the light-sensitive chronic pain sufferers. But you don’t have to have a neurological condition, migraines, or psychological distress to buy a shirt, this design looks great on everyone!

Support My Brain Hates Me and help my brain hate me less. Get yours today! 

Why I Talk About Pain & Depression & You Should Too

Depressed vs. Depressing

Many people in my life know me as a cheerful, friendly person. I’ve been called caring and giving. Someone once even went so far as to call me “sunny.”  Those aren’t ways in which you’d expect to hear a person living with extreme chronic pain and depression to be described. When people hear “chronic pain and ” they often think “miserable, awful, unbearable”… “sunny”  is the last word they’d use.

And that’s why I talk about what is happening to my body and my mind. That’s why I share the darkest thoughts that I have, and my bad days, and my painful hours through this blog. I feel that it is important for people to understand that a human being is not the sum of their diagnosis. I am not my pain. I can be miserable and I can enjoy life.

I have moments when I don’t want to live. The remainder of the time I’m thinking about how thankful I am for the time I have with my family. I have moments when my pain is so tremendous that everything else in the world stops and I am alone in a dark room, enshrouded by despair. I also have functional hours where I suffer through putting on makeup and socialize, smiling and laughing with my friends… pretending that the pain doesn’t exist.

Accepting Myself

My pain and depression and anxiety and my ASD don’t ever go away. These are things that are part of me. I used to be ashamed of them. I let people make me feel ashamed of them. I allowed doctors and friends and family to tell me that these were things to get over… from which I had to recover. I allowed other people’s discomfort with my health and mental state dictate how I interacted with the world. Mind you, I’m not saying that I’m not trying to find a cure for my chronic pain or proper treatment options to manage my depression or anxiety. I very much want to stop the pain I live with daily and I would love to live without negative thoughts. However, these things are part of my current existence and I shouldn’t have to hide them. I most certainly shouldn’t have to be ashamed of them.

ASD is not a thing to be cured. My Monster Migraine is not my fault. Depression and anxiety are also not my fault. These are not things I am doing wrong in my life. ASD is how my brain processes information. The rest is unfortunate, but part of who I am now.

But guess what? I’m also a positive, sunny, caring, helpful person who smiles and laughs. I’m silly.

Why I Won’t Shut Up

I talk about pain and depression because they are things that happen to me. I want the people I know to understand what I’m going through. I want people who might be going through similar issues to feel like they aren’t alone. I want the medical community to understand that patients are human beings who share their experiences, deserve the best possible care. Frankly, I also find it therapeutic to talk about my issues freely and be part of a community of people I consider to be survivors of themselves.

I’m not talking about the latest breakthroughs in anti-depressants during entire social engagements. I’m not waxing philosophical about suicide prevention around the dinner table. I am being honest with people when they ask how I am, and correcting misinformation in conversations when I hear it, and updating people if they show curiosity about my condition. Therefore, talking about pain and depression doesn’t have to be a constant endeavor, it just has to be something that I’m open to when the opportunity arises.

Why You Should Talk About Your Pain & Depression

Aside from the obvious therapeutic benefits that being heard and understood can provide, you would be amazed how may people don’t know about your condition. You’d also be surprised how many people know a little bit about your condition, but what they do know is horribly incorrect. You’d also be surprised that for every few people you talk to openly about your pain and depression, you may be giving someone the strength to speak out about their own suffering.

I would not have started this blog had it not been for other people who had the courage to talk about this weird thing going on with their brains. I would not have become an advocate for mental health awareness. I wouldn’t have learned as much as I have about.

You should not be ashamed to talk about suicidal thoughts, depression, anxiety, or chronic conditions because they aren’t your fault and because there are people who will support you. You may not know those people yet, or you might be surrounded by those people right now and they just don’t know how to help you and support you because they don’t understand what you’re going through.

Talk about it. I do. It helps.

Where and How to Talk About It

Here is a My Brain Hates Me (very much not a medical or psychological professional) Guide to ways to talk about what’s going on with your body and your mind:

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.

On Marriage Equality

TLDR: YAY MARRIAGE EQUALITY! We’re happy… so let’s not be jerks to the people who aren’t happy. Let’s show them compassion and be decent human beings with our words and actions.

Yes, many people have hate and fear in their hearts. These people are products of culture, upbringing, environment. Slinging insults at them to make ourselves feel superior is wrong. It is wrong to call another human being a name, question their intelligence, or otherwise condescend.

There are always going to be people who hurt us. Hurting them back is never the answer.

Compassion breeds compassion. If you have a right to your opinion, they have a right to theirs. It doesn’t matter who is actually correct. What matters is that we are decent to one another and we show compassion to our fellow human beings with our words and actions.

The only hateful and ignorant comments that I’ve seen today have come from people celebrating marriage equality. I’m very thankful that my Facebook feed is full of people who welcome this much needed change. I’m disappointed that I’ve seen some ugly behaviour from those very same people, however.

None of us is perfect, but, damn it. We can be better than that. Much better. Be nice to other people and live with compassion in your heart.

 

Coming Soon! Cefaly Unboxing- So Watch Obama’s Eulogy NOW

My Cefaly is on the way! As soon as it’s in and I’m up to it, I’ll film it and review it! I’m very excited.

Meanwhile, in the non-pain world… marriage equality for all and a beautiful speech from our President.

I suggest watching the entire thing:

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.