“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.

Self-Advocacy, Chronic Pain & Comorbid Chronic Depression

I’m not a doctor. I’m not a mental health professional. I’m one of 14.8 million (NIMH) people suffering from a major depressive disorder in the United States and one of 1.5 billion (American Academy of Pain Medicine) people suffering from chronic pain in the world.

As of this very moment, scientists don’t understand exactly why depression and chronic pain are linked, but the comorbidity of these conditions cannot be denied. Because these conditions are often both present in patients, one treatment strategy alone is often ineffective. To deny the mind and spirit when the body aches is like putting a band-aid on a broken arm and telling us to walk it off. However, many medical professionals are just learning that it is important to pay attention to the psychological effects of their patient’s conditions, and the reverse.

Photo: ALAMY

Therefore, I think it is important to have a conversation about what we, as patients, must do to advocate for ourselves. I discuss my doctors an therapists frequently and candidly because there is nothing shameful about being ill or mentally unhealthy. I also discuss them because removing the stigma will hopefully encourage others to seek much needed treatment even when it is not suggested by their general practitioners.

We tend to think of general practitioners as mechanics. They keep the body running and send us out to specialists to have our engines rebuilt when they themselves are not qualified to do so. What is lacking from general practitioners is a total-body approach to our healthcare. It is unfortunate that vision, dental, and mental health have been divided into separate fields. In fact, it is detrimental to those of us who suffer from chronic anything.

Think about the diagnostic process when something goes wrong with our bodies. General practitioners run through the check-lists of tests an procedures with which they are familiar and only then do they begin referring to specialists, eye doctors, and dental practitioners. Notice that I did not say mental healthcare providers in that sentence. They keep the body running, with little consideration for the mind. This is not to say that doctors don’t send their patients to psychiatrists and psychologists. However, when patients are sent, it is rare that the patient will then undergo in-depth counseling to determine root-cause issues. Typically, patients are sent with a list of symptoms they have discussed with their general practitioner, and the mental healthcare professional will prescribe something and manage psychoactive medication from that point.

This is extremely problematic. Although the chemical causes of depression may be treated, it is unlikely the patient will learn much needed coping skills to battle depression. Face it. We’re a society of instant-gratification loving people. We want pills to fix things. We want treatment to fix things. We don’t necessarily want to spend years in counseling learning how to be more functional emotional beings.

Which brings me to pain and depression. The road to diagnosis with chronic pain is a long, long, long, long road full of bumps and monsters and disaster. This process is harmful to the psyche. Between doctors who don’t know, doctors who don’t care, and doctors who mistreat chronic sufferers… patients develop an adverse reaction to the medical profession as a whole. We don’t trust that doctors know what they are doing. We feel like lab rats. And we feel jerked around. To feel pain and to not feel heard is dehumanizing.

Sure, it’s pretty obvious that hurting all the time would lead to depression. But it’s more than just feeling down about limitations. It’s a chemical process that begins to form a feedback loop in the body from which we cannot escape. When doctors don’t identify that this feedback loops is occurring, the only result is a worsening of symptoms.

As chronic pain and chronic depression persist untreated, they worsen. It’s inevitable. So what can we as patients and we as sufferers do for ourselves?

It’s simple… talk and take action.

Research symptoms. Prepare for your appointments. Consider mood as well as physical symptoms. Think of yourself as one whole being and force your doctor to see you as such. Ask questions about side-effects of medications. Talk about sadness, anxiety, crying, feeling alone or trapped with your doctors. Seek out mental healthcare and make sure that all of your healthcare providers are talking to one another. Treat your body and mind as two parts of one machine and get total-body care. Don’t wait for your doctor to tell you what to do. Do it and tell your doctor.

You are one body, mind, and spirit. These three things work in harmony to keep you going every day. I charge you with the care and maintenance of your total body. Demand that your doctor treat you the same way, and if they won’t, find a doctor who will. It is okay to seek proper treatment and it is okay to take your healthcare into your own hands. You are not at the mercy of the medical community. You are completely in charge of your treatment and you deserve the best they can offer.

But they don’t always offer, and you need to be aware of that.

Photo: ALAMY

5 Quick Self Care Tips

635596573662566007-247047096_tumblr_nb1ybjmxqh1r4grm0o1_500

Bad day? Here are 5 things you can do RIGHT NOW to feel better:
  1. EAT, SLEEP, HYDRATE! Okay, that’s three things. I cheated. But, trust me, if you’re hungry, tired, or dehydrated- you can feel better instantly by taking care of it NOW!
  2. MUSIC! Listen to something that soothes you. It could be Enya or your fave death metal. It doesn’t matter what you choose, so long as it speaks to your inner calm.
  3. BREATH! Try the 4-7-8 breathing exercise, or any deep breathing strategy to relax your body and engage  the parasympathetic nervous system. It slows the heart rate and calms the body.
  4. CREATE! Art can take our brains to another place. It can help us focus when we listen, and help us express feelings in a safe way. It can also help us relax. Try painting, colouring, or using whatever you have on hand to get creative. anything crafty will do. Sew, knit, sculpt, glue something! It doesn’t have to be pretty to make you feel better.
  5. CHANGE YOUR ENVIRONMENT! If you’re at work, try taking a quick break. If you’re at home, change rooms. Wherever you are, if you are upset, in pain, or anxious… it can help your mind and body switch gears if you change locations. Work within your limits. If a walk is too challenging, sit on the porch. If you can’t take a break at work, try a quick stretch. Adjust the temperature, change the channel, cuddle something soft. Think of the following words when you’re making a change: stimulate, distract, control.

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.

8 Ways to Distract Yourself from Your Chronic Condition

No matter what you’re going through, be it depression, a chronic condition, or just a rough patch in your life, it’s important to give your mind and body a break now and then. A friend of mine, who is a Reiki practitioner, was over to do a session with me this past week. She told me that I needed to laugh more. I think this is true for all of us. As she said, as so many have said, “laughter is the best medicine.”

I think that laughter is a powerful form of distraction, the most powerful in fact. There are other ways to take a brief vacation from mental and biological negativity, however. Here’s are some things to try:

  1. Laugh. It’s not always as simple as just laughing. I get that. But what are some things that make you laugh? Silly movies? Ridiculous cat pictures? Baby animals? People falling down? Do you have a friend who always makes you smile? You used to laugh, and you need to do it more. Laughing hurts less than crying.
  2. Get creative. I learned to play the ukulele after I became disabled. It’s something I can do with my hands that doesn’t require thinking. I can play happy things or sad things. The point is that, while I’m playing, I’m not thinking about how much I hurt. I also draw and embroider. If you have a condition that limits your fine motor skills, there is always finger painting. I’m serious. Get messy! Make something! I shared the story of a woman I met at the Jefferson Headache Center who makes rubber band bracelets on a loom. She can only manage the energy to work on one for 15 minutes, but that’s enough time to finish. At the end, she’s happy to have a new bracelet. I have friends who are talented crafters, photographers, performers, and musicians… and all of them struggle with something.
  3. Learn something. Sometimes it’s hard to feel passionate about anything at all when you lack hope about the future. However, I bet there’s something you’ve always been curious about. Depening upon the severity of your condition and the level of your daily function, your ability to spend time with friends or dedicate a lot of energy to projects may be limited. But your mind still works, and it’s aching to be used and kept spry. From puzzles to out an out research on a topic to free online courses to actually enrolling in an online university… there are many ways to pursue knowledge and keep your brain in shape. Do you love science? History? Philosophy? Embrace your hunger for knowledge and force the spark for learning. The more you look into a topic, the more you might find you want to know. Not only will this give you something to talk about other than your condition (which is just a fact of life when you have anything with the word “chronic” in front of it), it will make you feel good about yourself.
  4. Netflix/Podcast binge. Yes, I said it.Binge. I know that studies have shown that a binge on shows can lead to negative emotional whatever. Fine. But you know what a binge does for me? It passes the hours upon hours that I spend in bed where I am absolutely unable to do anything other than just be in bed in pain. I can’t even look at the television, but I can listen to it. And if the light bothers me too much, podcasts are a beautiful thing. I spend hours alone while my family is at work and school. Having human voices around is nice. I can’t be productive, but I can listen to/watch things that interest me or comfort me. I can learn, I can laugh, I can feel uplifted… all from the comfort of my fetal position.
  5. Listen to music. Bob Marley said, “One good thing about music, when it hits you, you feel no pain.” I choose to take that in a lot of ways. Music is soothing, there’s no doubt about it. Your favourite tunes can elicit all kinds of memories. Actively creating music by playing an instrument or singing, and listening to music are both equally as restorative. You don’t have to listen to light, fluffy music. If you’re angry about what you’re going through, you might feel better if you listen to some angry music. Get it out. It’s okay to feel what you feel. You have every right to be upset about what’s happening to your mind and body. This list isn’t about sugar-coating your condition. It’s about distracting you.
  6. Do stuff with friends. This is a tricky one. Friends can be a double-edged sword. Your good friends who understand what you’re going through will treat you like a human being and not like a fragile doll. Everyone else might be weird around you and that might be unpleasant. Chronic conditions really show you who will stick by you, and you’ve lost people and made new friends a long the way. My husband and I have worked hard to construct a social life that brings the party to us yet allows me to rest and slip away if I need to. We have people over to our house, we ask friends to help with the set-up and clean-up. We make them potluck events so we aren’t doing a lot of the work. I have friends over for show marathons and silly sleep overs. I wear my pajamas because it’s my damned house. My friends are cool with this. They get it. My friends understand that I can’t always drive. We do ridiculous, silly things. It’s all about finding the right people to spend time with.
  7. Get physical. I don’t mean exercise. You should do that too. I mean touch someone, or have them touch you. Massage, caresses, tickling, even intimate touch can be a great distraction. It doesn’t have to be sexual. As much as I hate to admit it, when I’m having a horrible pain day, it’s pretty awesome when my dog licks my feet. I frequently ask my husband to touch my back lightly. Simply being touched on a part of my body that doesn’t hurt is a great distraction. When I’m home alone, I use a soft ball to apply pressure to sore points on my back. Tennis balls work too. Heating pads and ice packs help draw my attention away from my pain. It’s all about pulling my attention elsewhere.
  8. Meditation and breathing exercises. If you live with chronic pain or depression and you aren’t already meditating or practicing controlled breathing on a regular basis, now is the time to start! Introducing calmness into your world is important for your mental and physical health. I’m not going to try to pitch it to you. I’m just going to tell you that I meditate and I use breathing exercises and they help me immensely. I think they could be good for you and you should give them a shot. That’s just my opinion. Here are some great resources to try if you need some help:

Quality of Life Scale

invisiblematters:

I might have to show this to my therapist freaking GENIUS!

HOW YOU GET THROUGH IT ALL

howshouldwetreatme:

Chronic Illness Illustrated

rookiemag:

Chronic Illness, Explained

Some ways I’ve learned to manage my longstanding health conditions. By Jamia. Illustration by Leanna.

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.

ID-100112062

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

13 Darkly Motivational Quotes

When getting through the day is my goal, a sappy quote about success and achievement doesn’t motivate me to keep going until tomorrow. I prefer the comfort of bittersweet words that ring true. Sometimes, it’s worse to feel alone with you’re unhappiness than to be unhappy. Here are some quotes that I’ve found motivational over the years:

  • “My formula for living is quite simple. I get up in the morning and I go to bed at night. In between, I occupy myself as best I can.”

– Cary Grant

  • “It’s possible to love a human being if you don’t know them too well.”
  • “If you’re losing your soul and you know it, then you’ve still got a soul left to lose.”

– Charles Bukowski

shareasimage

  • “You can’t really be strong until you see a funny side to things.”
  • “The trouble with super heroes is what to do between phone booths.”

– Ken Kesey

  • “How wrong it is for a woman to expect the man to build the world she wants, rather than to create it herself.”
  • “Do not seek the because – in love there is no because, no reason, no explanation, no solutions.”

– Anaïs Nin

  • “Passion is what gets you through the hardest times that might otherwise make strong men weak, or make you give up.”

– Neil deGrasse Tyson

  • “Time moves in one direction, memory in another.”
  • “For years I have been mourning and not for my dead, it is for this boy for whatever corner in my heart died when his childhood slid out of my arms.”

– William Gibson

  • “Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.”

-Ray Bradbury

  • “Beware of monotony; it’s the mother of all the deadly sins.”
  • “If only we’d stop trying to be happy we’d have a pretty good time.”

– Edith Wharton

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.

Personal Changes Since the Brain Thing

Life has changed in many big and small ways in the past two years. I thought I’d tackle some of the day to day things head on… and by tackle, I mean ramble aimlessly.

Therapy Anxiety and the Giant Ukulele

Yesterday, I had my first art therapy appointment with T.W.. My homework prior to the appointment was to make a timeline of all of the emotionally significant events in my life so that she’d have some framework around which to develop my treatment plan and diagnosis. I also had to purchase a sketchbook and oil pastels.

Unlike my Psychologist, Dr. B. I have an actual “in writing” treatment plan that focuses on loss, depression, coping with pain and family communication, etc. I’m excited about that. I enjoy plans. I like knowing what to expect, rather than just walking in, sitting down, and telling Dr. B. about my week… which hasn’t really addressed mourning my mother… etc. T.W. then had me draw something that I considered safe and happy, and then we discussed a time when I was faced with a trauma and loss and I had to draw that too. We kept coming back to my picture of the ukulele I had drawn, my ukulele. It’s Cognitive Behavioural Therapy that focuses on coping with trauma. I’m down with that. This girl has had a great deal of trauma. I’d love to deal with my PTSD.

T.W. made an excellent observation when she asked me how I, as a six year old, coped with the death of my baby brothers. I told her that I think it is important for children to understand that death is a natural part of life and it shouldn’t be hidden away. She said that I was six. I was a little girl. I watched them die. How could that possibly feel natural or fair to a six year old? I suppose I will have to talk to her about losing cats, and the dead birds, and having funerals for animals. I will have to talk to her about beloved pets dying in my arms. About stepping on a tiny kitten accidentally and crushing its skull just enough to mess it up in a way that I knew wasn’t good. I will have to talk to her about reaching into cat vaginas when they were breaching because my hands were small enough and pulling out live kitten after live kitten… and then sometimes they weren’t alive. I will have to talk to her about those things. About cats committing suicide. About sliding feeding tubes down their throats. About how life is a delicate and fleeting thing, and how humans are really just big animals and we all have souls.

That should be interesting.

I like her.

Her observation was that I intellectualize but my head and hear don’t always communicate. This is true. Sometimes instead of protecting my heart, which I at times wear on my sleeve and at times lock away behind angst, I simply rationalize rationalize rationalize. I do. This is true. Good show, T.W.

Today, I have my biofeedback intake session. Because I don’t just get to have biofeedback therapy but have to be evaluated for eligibility, I am very stressed. I had a dream last night about opening up to the Psychologist, Dr. W., and suddenly being in a classroom of people including my arch-nemesis from preschool. Essentially, I feel vulnerable and as if I have to prove myself. What if my depression, anxiety, PTSD, HFA, and chronic pain disorder aren’t good enough to get biofeedback? Egads!

Luckily, my husband has a rare paid rain day off, so he is driving me. I will feel less icky icky bleh with his presence.

I’m sure it will go well enough.