“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.

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“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.

Sex and Chronic Pain

I’m an adult female in my thirties and I like sex. There, I said it. I’m a woman who likes sex. But there’s a problem with my sex life… and it’s a whopper. I have a chronic and painful neurological condition.

When I crawl into bed with my partner, I bring my pain with me. And it’s not the fun, kinky sort of pain. It’s the nauseating, ice-pack-clinging, opioid-needing kind of pain that takes over my entire body and makes everything from bathing to driving difficult. So you can imagine how trying to relax and enjoy myself physically might be an issue.

“Chronic pain is evil incarnate and doesn’t want anyone it affects to get laid.”

Though it isn’t just the pain that causes trouble, the medications can muck things up as well. Most of my medications affect sexual desire and function to some extent. Sometimes my flesh is willing but my mind just won’t get there. Other times my mind is aching for action, but my body won’t cooperate.

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Between knowing that I’m in physical agony most of the time, feeling my frustration with my own sexual dysfunction, and experiencing many of the unpleasant and disgusting side effects of my condition and medications up close- my partner has it tough as well. Recently, he admitted that hearing me vomit so frequently really affected the mood. While not my fault, and not something that affects his ability to see me as a sexual or desirous creature, it’s still not sexy to hear someone puke all of the time.

Chronic pain negatively affects physical affection in my relationship. That wouldn’t be so terrible if chronic pain didn’t also cause things like depression and anxiety and loneliness. As someone who lives with chronic pain, depressive thoughts are often overwhelming, and sometimes the simplest act of affection can calm me. Yet the one thing that I need, human contact, is the one thing that my chronic pain has pushed away.

Most of the day I am in the fetal position, listening to something, doing the small things I can accomplish here and there. Things like date nights are often tense, rescheduled, or we just give up and stay home. A lack of sexual or affectionate contact in a relationship can lead to an expectation of sexual or affectionate contact in a relationship. Those expectations cause pressures on all partners, which lead to stress, which lead to further issues in the bedroom.

Chronic pain is evil incarnate and doesn’t want anyone it affects to get laid.

Dating with chronic pain can be difficult as well. Imagine having to disclose personal health information to someone you hardly know simply because you might have to reschedule or cancel. Sure, you could not tell them. But then you seem like a flakey jerk who is wasting their dating time. The right thing to do is to be up front with people about your capabilities and your schedule. But what if it’s a first date? How do you ever get to the second date?

Marriages end because of chronic illnesses. With that kind of weight bearing down on me all of the time it’s impossible to feel sexy or impulsive. There is no levity in my relationship. My pain is my ball and chain, not my partner.

How do we get that spark back when I put more value on wearing makeup and taking pain medication to look human for social events than I do on doing the same for my partner. How do I feel sexy when I’ve resigned myself to never having sex again because it hurts less emotionally than hoping that sex will happen? How is someone supposed to want me when I’m curled up with an ice pack and a heating pad and I haven’t canged my pajamas in two days?

For better or for worse, in sickness and in health is kind of bullshit. Yes, we stick around, but it doesn’t mean we’re still attracted to the people who are wasting away physically or emotionally in front of our eyes. It doesn’t mean that we can think of them as anything other than fragile and broken. It doesn’t mean we aren’t just too damned sad to even think about sex.

I honestly did set out to write a helpful blog filled with relationship tips for maintaining your sex life while living with chronic pain, but it wouldn’t be honest. I’m not maintaining a sex life while living with chronic pain. I’m mourning a sex life while living with chronic pain. I’ve done the research and a lot of it is standard advice about communication and date nights and making time for your partners. It’s all about keeping things special between you. I can’t tell you how to do that because I don’t know how to do that. I don’t know what any of that is like.

It is important to try to maintain as much of your self as you can when you live with a chronic illness, and it is also important to know when to let some things go. Perhaps this is simply something I need to let go.

Image courtesy of marin at FreeDigitalPhotos.net

The Sacred Word: Managing Arguments Like Adults

My art therapist gave me an important word to share with my husband during times when arguments or stressful situations are escalating towards either me having a meltdown or him becoming irrationally angry. She told me that this is a sacred word and that the person who speaks the word is responsible for circling back after an agreed upon period of time. When the word is spoken, everyone stops, and the person who speaks the word must be given space to process and soothe themselves.

The word is sanctuary.

My husband and I have agreed that we will follow up with one another the next day.

“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.