“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

Trigger, Trigger, Trigger

It’s been a difficult week on the spectrum for this chick. I thought I’d talk about some of my triggers since I’ve been soothing myself an on the verge of meltdown for days.  So here are the things that cause me to say things I don’t mean, wring my hands and scratch myself, and of course wail in the bathroom.

 

  • Failure or perceived personal failure. School work has always been a struggle for my son. He lacks organizational skills and the desire to just “get things done.” He also gives up on classes if he can’t comprehend the material on the first try. Therefore, Middle School is kicking all of our asses. This makes me feel like a failure as a parent. My own mother never really pressured me about homework or studying and I would lie about school work because there were other things I wanted to do. I hated school because it was full of people that I couldn’t connect with and I always felt like an outsider, even on those rare occasions I was included. My son says that he hates school, and right now he specifically hates Algebra. I can help him with the math, but he’s really fighting me every step of the way. He, like me, does not like to ask for help. He, like me, sees asking for help as a two-part problem: first, it is an inconvenience for other people to take time out of their day to help us, and second… it is a sign of weakness to admit that we are failing to understand a concept. Every quiz, piece of homework, project or test that my son does not get an A or a B on feels like a very personal failure. He lies to me about schoolwork because there are things he’d rather do. He is exactly like I was in school (with the exception that he has a social life) and unfortunately school isn’t like it was in the early 90’s. He has more homework and classwork that counts in his overall grade than I ever did. I got by in school because I retained the material for the test… but I rarely bothered to do any homework. It did’t hurt me because homework was a much smaller percentage. All of this leads to one conclusion on my part- I am a bad parent because I can not help my son overcome personality traits that I share so that he will be successful in life, go to a good college, get into the High School specialty program in which he’s interested, etc. I’ve yelled at him. I’ve bribed him. Currently, my husband has taken all of his recreational activities away so the boy can focus on school. I feel like a complete and utter failure as a parent because I can’t personally change my son’s attitude and work ethic. He’s exceedingly bright so he’s in all Advanced classes, but he won’t do the work to prove he’s exceedingly bright. I cannot accept that my son is an average performer because I was not an average performer. It is very difficult for me to separate my experience in school from his. I have been riddled with anxiety all week simply because he’s struggling with concepts in Algebra. I am convinced that I am a bad parent, that I did something wrong in the past that has led him to be this way, that my genetic contribution is hindering an otherwise awesome child.
  • Being lied to. Granted, I have become something of an expert on my husband and son’s body language simply because I’m obsessed with understanding them… but I still can’t tell when they’re lying. I catch my son on occasion, but typically he confesses out of guilt. My husband is a different story, because he genuinely feels that there are things about him I have no business knowing or no need to know. When I discover one of them has lied to me I feel foolish, as if I am to blame for their lies because I failed to be trustworthy or a good wife or a good parent. I feel at fault when they lie, but I also feel very angry very fast. Being lied to rubs that part of me that cannot handle injustice on any level. Lies throw my world out of balance. If I sense that I am being lied to but cannot determine why I feel I am being lied to or about what, my stomach hurts and I get a feeling in my chest that won’t go away until I discover the truth. This has caused me to invade my husband’s privacy in the past. It makes me fly off the handle at my son. There is no end to the temper tantrum/meltdown possibilities in the lying arena.
  • Injustice. This is a huge one, not only because it ties in to the previous two triggers in many ways, but also because I feel it the deepest. I’m different. I get that. I don’t think like many people. I get that too. I’m repetitive and I hold on to past injustices for just about ever. I don’t understand why people are mean to other people. I am often told I am mean, but really I’m just being honest. I suppose being overly honest can be interpreted as being mean. I don’t think that people who bully other people are being overly honest and it hurts my feelings… I think they just want to hurt someone’s feelings. I never want to hurt anyone’s feelings. I want people to be happy all of the time. When something is done to me or said to me that is hurtful and unfair I either run away and cry and rock, or I get very combative. If someone calls me fat, that is an instance in which I’ll just wander off and cry. I am fat. That is something that is true. I don’t like being fat, and for other people to think I’m fat, but it’s true… so there is nothing to dispute. If someone tells me I did something I did not do, or ascribes motive to my actions that is inaccurate I will fight tooth and nail until that person acquiesces to the truth. Unfortunately things like personal motive are not obvious like being fat. How can I prove to someone that I did something for Reason A when they think I did it for Reason X? I can’t. It’s entirely subjective. There are no facts with which to work so I only have my word. I understand that life is not supposed to be fair, and that that applies to all areas: love, death, friendship, etc. This does not mean that I can accept what I consider to be unfair treatment. A sense of injustice will throw me in to a whirling tirade of truth-seeking madness. Injustice = meltdown.
  • Inequitable treatment. One would say that this would fall under the Injustice topic, however I think it’s a separate issue. Injustice is a personal feeling that someone else is wrongly accusing me, inequitable treatment is  fact-based (although slightly subjective given how the facts are interpreted), observed inequality in how I am treated versus other people. This one is difficult to explain because there is a lot of complicated relationshippy stuff tied up in it due to the nature of my marriage. I’ll try my best to give an example. My husband has a great many rules. These are rules that I have come to learn, not because he has said, “This is a rule, you cannot do ABC,” but through his reaction when I do ABC. If ABC makes him unhappy, then I should not do ABC… as a rule. My husband would tell you that all of this is ridiculous and that he doesn’t have rules, he just expects me to behave reasonably. I suck at that… so I will continue with my example. If I observe my husband doing something with or for someone else, whether it was strictly out of politeness on his part or not, and it is not something he would do with or for me… I get the crazy feeling. The crazy feeling is the pre-meltdown feeling.  When I am trying to navigate a relationship full of rules and it suddenly becomes apparent a rule is true for me but not for others, it throws everything out of whack. Why would my husband let someone else read him their poetry when he has no interest in reading my own? Why would my husband let a friend slap him on the shoulder, but get angry with me if I perform the same act? Why would my boss write up someone for not doing their job when I have consistently shown that I am also horrible at the same task? These things are extremely confusing for me. Yes, people are inconsistent, irrational bags of flesh… but can’t a girl try to make some reasonable deductions here? NO? Oh… okay… well pardon me while I lose my shit because I feel stupid, disconnected, and lost. People are so confusing.

There are tons of little things that send me a’wailing, but those three categories are the big ones. All of this is very hard on my family because the things that fall into those trigger categories are also things about which I am utterly insecure. Can you imagine being married to a woman who has trust issues? Can you imagine how difficult it is for my family to deal with my rigid version of the world when they are floating around freely in reality? Can you imagine the lengths to which people walk on eggshells around me? Can  you imagine how crazy and abusive my family thought I was before I was diagnosed as autistic?

The week has been bad. My son’s attitude about school is an affront to me. My husband just wants the yelling and crying to stop and told me to take the boy out of advanced classes, but I refused. I also refuse to accept that my son doesn’t care. I think he has a crippling inability to ask for help, because I do. I also think he means well but evidence piles up against him, like it has all my life. Every C, D and F makes me cry. I’ve been having nightmares about being back in school and not knowing the material on tests. I’m an utter wreck. W R E C K.

I know there has to be a solution out there, but with my mom gone, I don’t know where to turn even though she was worse at this stuff than I am. I just want my son to suck things up and get them done, but I can’t force him. I don’t want his life to lack fun either. I don’t want to take things away from him. It doesn’t work. He will make bad decisions regardless of whether or not he has his cell phone. He’s thirteen and his social life is the most important thing to him right now. His priorities are out of whack.

I’ll just keep praying and trying to help him as best I can and hope that some day he sees that I just want the best for him. In the meantime I’m trying so so hard to keep my emotions in check, but it’s been an awful head week and my temper is as short as a temper can be.

 

Loneliness Illustrated So Beautifully You Will Need To Tell Someone

Loneliness Illustrated So Beautifully You Will Need To Tell Someone.

Telling My Father

The following is a correspondence between my father and me that began on Father’s Day, the day I decided to tell him about the HFA. I have edited out names and certain events that are too personal to discuss out in the open like this. I want to share this because I think it’s important to document what it’s like to be 33 and finally have some concept of why I am the way I am.

Labels, labels are everything to most people. 

I am just me.

 

Dad,

Dad, I’m really glad that you and P. visited. I want you to know that I love you and that I’ve missed having you in my life.
 
I haven’t known how to say this or when to say this because it is something that I feel like someone should have figured out long before now and I would have had such an easier life and I think you and I would have a much different relationship. I’m just going to blurt it out here and let things fall as they may.
 
I’m autistic. I was diagnosed with High Functioning Autism last month. It’s also called Asperger’s Syndrome. It’s a genetic condition and it’s probably that either you or Mom have traits. It affects the way that I experience the world with my senses, and it heavily affects the relationships I have (or more accurately) don’t have with people. My husband heard a story on NPR about a guy who took some silly quiz online that led to being diagnosed. The guy’s wife works with autistic children and thought some of her husband’s weird behaviour seemed similar. M. thought that perhaps he had something similar going on because of his difficulties with interpersonal relationships and the communication issues that he and I have. M. and K. and I all took the same quiz and I scored high on the “spectrum.” M.came up as having both autistic and neurotypical traits. My son came up as completely neurotypical. I discovered for the first time just how weird my family thought the things that I do are. 
 
I did some research on it and in my reading I discovered that people with HFA often experience migraines with sensory overload. I thought that it might have something to do with what’s going on with my stupid head so I found a Psychologist who specializes in autism spectrum disorders to find out if I was autistic or bipolar or schizoid or anything else. Autistic people are sensitive to medication, especially a majority of the kinds of medication I’ve been on as treatment for the Status Migrainosus. That’s all still being figured out by my doctors.
 
I underwent testing and observation and I was diagnosed. So that’s pretty much how this all came to fruition.
 
I’m not a social person. I can’t maintain friendships past internet-interaction. I don’t like being touched. I have meltdowns. I do things like wringing my hands and tapping on my mouth and rubbing my thighs and spinning my foot when I’m distressed or overstimulated… or sometimes even when I’m happy. I have childish reactions to things that make me happy like clapping and crying. I flap my hands when I’m upset have crazy  meltdowns where I say and do things I sometimes don’t even remember. I run and hide in bathrooms. I do all kinds of kookie shit. 
 
I’ve made a good go at life and have been successful in a people-intensive career against the odds… but socially and family-wise and depression and anxiety-wise I’m a big old mess. I’ve gotten by by copying people and acting and masking my weirdo stuff as best I can. 
 
My Psychologist is treating me for the added anxiety and depression that being in constant pain causes and I’m working through some Cognitive Behavioural Therapy exercises to help me sort some things out. He’s also helping me work through traumas from abuse and some PTSD stuff.
 
I wanted to tell you and P. when you were here but I had JUST been diagnosed and I was so worried I’d just sob and blubber and not be able to explain it. When I revisit events from my past I experience the same emotions I did then so it’s difficult for me to talk about things and explain and even sometimes know how I feel.
 
I am telling you today because you’re my father and we’ve had an unfair go of it, and I’m trying to reprocess the world and my life through freshly opened eyes. I’m not good at saying things, but I can write them apparently. 
 
I love you, and I hope we can be closer going forward. I have only told you and Mom so far. I’ll get around to talking to my oldest sister about it, (or my husband will talk to my sister about it because he is generally my buffer.) I don’t really talk to my other sister, just because I don’t talk to people who don’t force themselves on me. My oldest sister is sort of a force to be reckoned with.
 
So there’s all of that. 
 
I hope you have a wonderful day and know that I love you so much.
 
-Your Daughter
 
To which he replied:
 
Wow and that’s for filling us in. You definitely got it from your mother as she did so many things that were completely whacked and unexplainable. I had just come to the conclusion she was a sociopath. 
Keeping you at arm’s length was not only a fear or getting so badly hurt again, but I had also seen some of her in you and that scared me. Maybe now we can get somewhere with our relationship. 
Hugs, 
Dad
🙂
 
I haven’t had a relationship with my father since I was ten or eleven. We’re friends on Facebook and we’ve seen one another over the years… but… 
 
This is my third attempt at getting my father back into my life. 
 
We’ve had a dialogue which has consisted of rambling e-mails from me, and short, to the point messages from him. 
Maybe we’ll get somewhere.
 

Educating the Family

I’m trying to expose my family to Autism in the media. We watched “Temple Grandin” together, and right now I’m watching “House of Cards” with my son, after much protest from him. 

Autism makes my family uncomfortable. There are lots of “I think in pictures” jokes that get bandied about. I have a thick skin. I’m used to being made fun of and the things I care about being made fun of. It’s hurtful, though, when I’m trying to share how I’ve experienced the world all my life. 

I just want to be known. I don’t want to be known as autistic. I want to be known as me. I want to be understood. That’s all we all want.

I’ve been hiding so much because I was taught it was shameful to act that way. I can fake it.

But can I real it?