Lions, & Tigers, & Self Care

About a year ago I realized that my life was a delicate balance of self care, determination, and coping. As I looked around at my friends and family, I began to recognize needs in them that I had always had, but never known how to tackle until I started dealing with a chronic condition. Self care wasn’t just a thing that sick people did. It was a thing that everyone did, in a way, as a preventative maintenance for their bodies and minds.

So, I started a private Facebook group and invited some of my friends to join in on the self care conversation, and then they invited their friends… and now the group is 78 and growing.

From my Petri dish of friends, with their struggles and medical conditions and triumphs and overcoming… I have gathered a TON of self care resources.

And now I want to share those with you, with the world.

Introducing Lions, & Tigers, & Self Care – The Website. You can find us at http://selfcarebears.org.

LTSC’s goal is to provide:

  • Resources for those in crisis
  • Information and strategies for the art and craft of self care
  • Local activities and support groups you can incorporate in your self care plan
  • Tips for motivating your friends, families, and community to join you on your self care journey

I’m adding information as I go, but the site is up for your snooping pleasure.

Get your self care on, people.

Post Script: To my friends and family, as always, this is all dedicated to you. I love you.

My Experience with Online Therapy at Breakthrough.com

Yesterday, I had my first session with a clinical social worker and I was in my pajamas. Instead of sitting in a waiting room surrounded by germ-ridden magazines, dusty wall art, and administrative noise… I was in the comfort of my own bed.

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Breakthrough.com is an Online Therapy service that provides access to mental health professionals via web cam. Sessions are conducted as a video call over a secure video system that you download when you register for the site. Sessions range in cost from $50 to $250 dollars a pop, and many have self-pay options for people without insurance.

Form this point forward, I am going to discuss my personal experience with Breakthrough.com and the mental health provider that I selected. There are multiple articles about Online Therapy, and many different websites that now provide the service, and I think that you, as a person who is reading this now and using the internet, are capable of using a search engine to find information about those sites.

I have Medicare parts A, B, and D. None of that provides mental health coverage. Therefore, I searched for a provider who had a self-pay rate I could afford. Breakthrough.com has a great search-filter set that allows you to winnow down to a list of professionals who will best suit you. I chose a young woman who is a clinical social worker. She’s worked with people who have histories of past trauma and abuse, as well as helping with depression and family issues. Her self-pay rate is $60 an hour. Phone sex actors and actresses make more than a dollar a minute, so I feel like this is an excellent deal.

When I selected her as my therapist, I was given the option of a free, 15 minute consultation. I chose to go ahead and schedule an appointment with her, because I don’t feel like 15 minutes is long enough to get into the things that I, personally, need to get out of therapy. When I scheduled my appointment for 2 PM, she promptly messaged me, using Breakthrough.com’s secure messaging system, to ask if I wanted a 30 or 60 minute session.

Her message to me was polite, upbeat, and made me feel like she was welcoming. She let me know that if I had any questions, she was happy to answer them. I did have questions about what would happen before our session, and if I’d have to fill out paperwork. This was information that I later received in an e-mail from Breakthrough.com, however she provided the information happily. I didn’t feel like I was hassling anyone, and I wasn’t made to feel dumb that I had missed the big, green “TUTORIAL” link on the home screen.

Before my session with A (which is what I will call her), she let me know that I’d have to read some terms and information and also fill out a mood assessment. This information only becomes available 10 minutes prior to your session.

Breakthrough.com Is Beyond User Friendly

I’m web-savvy. I can figure things out on my own. With Breakthrough.com, I didn’t have to figure anything out. I asked, and was given information, and the website does an excellent job of making sure that your appointment will go smoothly. They offer a 15 minute test session where your tech issues get worked out. They check your internet connection to make sure that your session won’t be interrupted or lag. They tell you how to turn on your camera and mic. They show you where to download their secure video software. It’s user-friendly as all get out. I had no issues with the software installation.

The only tech problem that I had at all was caused by my son uploading things online when I had asked him not to. He created lag on my end, and there were 3 instances in which my video call with A froze.

Breakthrough.com Gave Me the Best Therapy Experience I Have Ever Had

I don’t want to gush. I’m not a gusher. However, there is praise due to A, and to the way that Online Therapy works as a whole. Below are some issues that I have had with therapists and other professionals in the past:

  • They don’t start right on time
  • They aren’t prepared for my session and don’t seem focused on me at the start
  • They take care of administrative tasks in front of me, such as billing, insurance calls, etc
  • They answer phone calls during sessions
  • They have to start from the BASICS in our first session and ask standard questions as opposed to actively listening and letting me talk about why I am there
  • There’s too much paperwork… paperwork… paperwork
  • They assume that I will be back and want to work with them
  • Waiting rooms suck
  • Receptionists vary from awesome to rude

None of this was the case with my session with A. Here is what was different about my Online Therapy session:

  • My start time was scheduled for 2 PM. My therapist video called me at 2 PM
  • My therapist used information from the e-mails I sent her prior to our session to break the ice, “You say you’ve been in therapy before…” and seemed prepared to talk
  • Breakthrough.com takes care of all of the paperwork before your start time, and separately from your therapy session. I wasn’t charged to do paperwork, and I wasn’t bogged down by a lot of administrative yuck. My therapist merely took notes in front of me
  • My therapist had her phone accessible at the start of the session, and stated that she was having technical problems on her end and was going to call me. Luckily, the website cooperated and she didn’t have to. I never saw or heard her phone again
  • My Online Therapy session was centered around me. I didn’t have to explain why I was there or justify wanting therapy. I was permitted to dive right into my issues and ramble. She asked reflective questions and showed true active listening skills the entire time. It wasn’t until 30 minutes into our session that she began directing the conversation back to things she wanted to get more information about. And when she asked, she was informed
  • She said phrases like, “if you want to work with me,” and “I’d be excited to work with you on these issues.” At no point did I feel that she was above me. She made no assumptions. She praised me for reaching out to someone, and acted humble about the fact that I had chosen her, and that I wanted to keep seeing her for a bit
  • I didn’t have to deal with a waiting room. I didn’t have to talk to a receptionist to schedule my next appointment. My therapist scheduled my next appointment and I received a confirmation on my Breakthrough.com home screen

Breakthrough.com Allows True Connections with Your Therapist

A, my new therapist, said that I… her meager client, could message her before our sessions with the topics I’d like to discuss. She said that it would give her a chance to look up possible resources for me to use outside of our sessions. She said that if I need her at any time while in crisis, to contact her and she will work with me. She was utterly focused on me and my needs as a human being during our session. Because I was at home, in my comfy bed, I felt so very safe discussing harder topics with a complete stranger. I left the session I had with her feeling like I had done therapy work, instead of going through therapy motions. That is extremely important to me.

Granted, this is my experience with one of their providers. However, I have to speak for those of us who are uncomfortable in office settings, or can’t always make appointments because we don’t feel well, or don’t like to make eye contact. Online Therapy permitted me to have my physical comfort needs met. I didn’t have to look at the screen. I could just listen and talk. She could see me. I could see her. She looked into the camera. I looked to the side. I could fidget. I could take sips of things. I had everything I needed without having to ask for it. It’s tremendous to be disabled or neurodiverse and have access to therapy that makes your environment for you.

Having control over your environment is so important when you’re talking about things that make you feel vulnerable.

Final Thoughts about My Therapist

There is one important thing that A did that no other therapist has done before. She asked what I have disliked about previous therapy sessions in which I’ve participated.

That’s a huge question. We all know I’m a quitter when I’ve decided that something just IS NOT WORKING (for me) and that I bail. I bail hard. I admit to it. I don’t see the point in dragging things out if there is no hope. I’ve left so many therapists.

Why? Well, here is the short list: feeling judged for my relationship style or sexual orientation, feeling like the professional was more focused on how interesting I was than helping me, feeling like the therapist was focusing too much on an issue that I felt was tertiary to the core issues I need to work on, feeling like the therapist had made a decision about something in my life and was exerting their personal opinion in session… etc.

I said all of this to A. She made notes. I told her that I, as a researcher and knowledge-seeker, have been doing my own trauma work and that I am ready to just dive into the deep issues I have from my past. She said she wasn’t sure if that was okay. More than okay. More than okay.

I like her. I hope this works out. Because I surely do like going to her office, aka my bedroom.

Also, I can go to therapy sessions without wearing pants. Bonus.

Payment

This is the thing that everyone really wants to know. I will reiterate that there are mental health providers who don’t require insurance. It isn’t a hassle to not have mental health coverage and the self-pay rates for many are reasonable. Breakthrough.com takes your credit or debit card information when you sign up, and then charges you after your session. It was easy. There was no extra billing to take care of.

Again, minimal paperwork with this site.

Things Breakthrough.com Professionals Can’t Do

They can’t prescribe medication. That’s the biggest thing. And honestly, I don’t go to therapy for medication. I see doctors for medication. I can find psychiatrists who will take mental health recommendations from my doctors if needed. Yet, my neurologist has been managing my antidepressants because she’s my primary prescriber and juggles all of my meds.

They have a long list of Terms and Conditions. As expected. Otherwise, except for the medication thing, I really haven’t seen a hole in what I consider MY therapy needs.

So far, 4 stars for Breakthrough.com and 5 stars for my new therapist.

Online Therapy, Acupuncture, & Dogs

… because why not dogs?

I’m seeing my acupuncturist for the second time today. I still have a bruise on my right hand from my first appointment. However, this is common… according to the internet. Thanks, internet, for making me feel better about tiny, painful needles in my skin.

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I also have an appointment with a new therapist. Before I discuss that, I should get into a bit of history about my art therapist. I loved my art therapist. And I was a bad patient. I poofed. I poofed because she made some comments the last few times I saw her with which I wholeheartedly didn’t agree… and it became something of a pattern. I found myself talking about the same issues over and over, instead of doing the work that was in my treatment plan. I didn’t feel that was productive. The last time I went was right before entering a period of emotional crisis. At that point I decided that, for me, I had gotten everything I was going to get from working with her at that time.

I know it’s incredibly wrong to just stop seeing a therapist and not give them closure, however, it is a service for which I was paying, and I have no insurance, and that deal could only last so long. Basically, it became an untenable situation for me in many ways.

Mind you, I haven’t abandoned self-improvement or therapy all together. I have been doing my reading, and creating art, and expressing myself. I have been trying to implement the plans and strategies that came out of art therapy. I use my Girl Cave as a retreat. I’m sleeping much better.

There is turmoil in my personal life which I have agreed not to discuss openly. That doesn’t mean I won’t talk about the suicidal thoughts, or the self harm I have inflicted upon myself, or the frequency with which I have used crisis and suicide hotline resources over the past few months. It is my belief that it is important not to hide these things away, but rather to throw open the curtains and let the damned sun burn the truth of them into us. I am hurting emotionally and physically.

I am not resistant to therapy in the least. I am resistant to unproductive therapy. I am resistant to judgmental therapy.

This is a good point to get into why I have chosen to seek online resources instead of traditional, in-office therapy. There are several websites that provide access to emotional support online. I have utilized the active listeners at 7cupsoftea on a few occasions. I found the group chat to be more useful than the active listeners themselves. It turns out that active listening is not a skill that everyone has naturally. Active listeners are simply people who have completed a web-based training and are volunteering their time.

Then there are the therapy sites that provide access to professional therapists. I have not used these resources before. The two sites that I looked into when I was performing late-night searches, as you do, are TalkSpace and Breakthrough. TalkSpace has been discussed in the media and on numerous talk shows. I found this to be a turn off. There was also some language in their EULA that turned me off. I can’t pinpoint what it is that made me choose Breakthrough, but that’s what I did.

I have an appointment with a Breakthrough therapist at 2 PM EST today. Actually, she’s a clinical social worker who has worked with families and individuals who have suffered trauma. She had the cheapest out-of-pocket rate while not being a Christian nutter.

I can’t see an overly religious therapist because my relationship style and sexual orientation don’t really mesh well with them. I’d rather be able to get those things out of the way and move on to the real work.

What do I consider “real work”?

That’s a tough question, with even tougher answers. I have past traumas, trust issues, PTSD, and some massive codependency to conquer. Doing these things will help me communicate more effectively, love myself more, and manage my health (mental and physical) more compassionately. See? I have goals. I’m clear cut. But I am so easily distracted by the swirling chaos of diagnoses and external stressors that I never get to the meat of the situation.

I’m at the point where I don’t want to gently wade into these traumatic issues. I’m good at self care. I’m good at knowing when I need to stop certain conversations. (Emphasis on “certain”.) I’m ready to deal with the awfulness in which I am mired.

On to the fun things! DOGS! Well, just one dog. I know this popped up on my Instagram feed (follow me on Instagram for dog, makeup, more dog, and occasionally pictures of knickknacks or medical crap. @niansahc ) but I think that a shout out is worth while.

Here’s my baby, Oliver, and my favourite quote about devoted little dogs for your viewing pleasure:

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“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

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! 

5 Quick Self Care Tips

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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.

MBHM SSRI Diet: DAY 10 UPDATE

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I started the My Brain Hates Me SSRI Diet ten days agoand I wanted to share how I feel after ten days of eating meals and snacks and well-timed carbs.

First, I have to confess that on Friday I had friends over and we had a classic sleepover with snacks and “Buffy the Vampire Slayer” watching and more snacks. I’m pretty certain that I did not stay under 1300 calories on Friday. However, the benefit of having friends over and the calories burned from laughing and fighting off my ridiculous dog simply must have made up for it.

Now on to the update!

My appetite is very much under control. My every thought is not of FOOOOD. This is a tremendous change from before I started the My Brain Hates Me SSRI Diet. I’m thrilled with this development. The lack of constant food cravings alone is a huge boon to my self-confidence. I feel like I have control over my body again. Will-power is a terrible thing to feel like you’ve lost.

And I’ve lost weight. 2 pounds in total as of the 1 week mark. That’s a healthy weight-loss rate.

10 days down, 18 to go. So far so good. Until then, the MBHM SSRI Diet and I will be good friends.

If you try this diet along with me, let me know how it goes! Comment here, or talk to me on Facebook or Twitter!

Image courtesy of Paul at FreeDigitalPhotos.net

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

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What’s the Deal with Reiki?

A good friend of mine recently became attuned in the first level of Reiki and offered me a session. She knows about the amount of pain with which I live. I spent a few hours with her this past Friday and it was interesting and relaxing, and definitely worth sharing with you.

What is Reiki?

Reiki describes both the process a practitioner uses to channel energy through a patient with little to no touch, and the energy itself. According to Reiki.org, Reiki is a kind of life force energy that clears the spiritual pathways of the body and to which practitioners must be attuned. A Reiki Master must train new practitioners to sense and manipulate this specific energy.

Does Reiki Interfere with Current Medical Treatments?

Reiki is about mindfulness and spirit and energy manipulation. It doesn’t affect any medications or treatments or care that you’re currently under. It’s a complimentary treatment. Reiki can be intensely emotional, however, so it is important to listen to the practitioner’s messages before an after your session. The practitioner should make themselves available for any questions. It is not covered by insurance.

The Preliminaries

My practitioner showed up on time, in scrubs, with her hair pulled back in a neat pony tail, with a travel case rolling along behind her. We hadn’t seen on another in a long time, so we embraced and exchanged our hellos and experienced the chaos that is my dog.

I had her set up in my living room. She had a massage table, which she covered with soft blankets and a sheet. She asked me if I had a preference about music that I like to listen to when I relax, and I let her choose something. I’m not picky. Any ambient music will do for me. She used her phone to stream music, and even brought her own speaker.

While she was setting up, she had me fill out paperwork that asked for information about my conditions and current medications and the standard contact information. Then she had a second sheet that she went over with me that covered topics such as what I’d like to address, what was my spiritual life is like, and if there were any other areas on which I’d like her to focus. She then asked if smell bothered me because she occasionally burns sage. Sage is fine for me. Before we concluded the paperwork she stated that she is in training and that she is not supposed to touch me. I granted her permission to place her hands on me because I know her and the session was as much for her to practice her craft as it was to help me. I’m comfortable with her. I merely asked that she be gentle with my head.

What My Reiki Session Was Like

I climbed onto the table and had a pillow under my head as well as under my knees to support my lower back. I closed my eyes and heard her scurry about me. She advised me that I might hear her write things down or turn pages while she worked. She let me know that she would give me quiet forewarning before she did anything so that there were no surprises.

She asked me to think positively and in specific ways. For example, she asked me to think things like, “I am healed,” as opposed to, “I will be healed.” Reiki focuses on the present. She also asked me to avoid mental thoughts like, “I am not in pain.” “Not” is a negative. I replaced that phrase with, “I feel good,” and tried to repeat the phrase over and over during the session.

She opened our session officially with a prayer.

Then the fun began.

I consider myself something of an Episcopagan. I’m a Christian but I was also Wiccan for a decade. I was obsessed with the paranormal and psychic phenomena as a kid and I have always had crystals and paid attention to my instincts. The next thing that happened was peculiar, but not entirely surprising, given the nature of the work she was doing. She asked if sound bothered me. I said that I should be okay. She then rang a chime in different places throughout the room to “raise the vibrations,” and I began to feel extreme pressure between my eyebrows. This is the spot I associate with my Third Eye. It was as if the chimes were waking something up in my body that hadn’t been awake for a very long time.

It was pretty cool.

I heard her warming her hands, which is a sound I’m familiar with from my time with massage and physical therapists. Then I began to feel a different kind of pressure building inside the center of my brain. It was as if something was trying to push its way in, or as if a balloon were inflating in my head. It wasn’t painful, mainly invasive. She then lightly placed her hands over my ears, forehead, and the crown of my head, spending several minutes at each.

After spending most of her time with my head, she then moved down the left side of my body, gently placing her hands at my shoulder and elbow, then elbow and wrist. It continued like this, drawing energy down the left side of my body in the path of my circulation down the left, then back up the right side of my body. She ended by focusing over my torso.

After the Session

When I was ready I moved back to my sofa and we chatted about what she found. She told me that my spiritual side, the left, was fine, but that my right side… the side with all of the yucky things that happen in life, was murky. She said I needed to laugh more. She asked me about some things in my past and present that aren’t common knowledge. All in all she was perceptive, professional, and compassionate.

Is Reiki for You?

Unlike massage and acupuncture and chiropractic treatments, Reiki is non-invasive. It comes from a place of love and compassion and spirituality. You don’t have to believe in it for it to work, but as my friend told me, it helps. The worst that can happen is that you get to relax for a while in a comfortable, quiet place with someone watching over you and wishing you well.

Will I Try It Again?

Yes. I need positive people and forces in my life in different shapes and forms. Spiritual healers who are also my friends? Bonus.

Image courtesy of http://www.healingpausepaws.com/

MBHM SSRI Diet: DAY 2 UPDATE

 

I started the My Brain Hates Me SSRI Diet yesterday, and I thought it important to share how I feel after two days of eating meals and snacks and well-timed carbs.

I don’t feel ravenous all of the time.

This is a huge breakthrough for me. Obviously, it is far to early to tell if the change is dietary or due to my recent Botox injection or the addition of a new medication. Whatever the cause, I see no reason to discontinue the diet. I’ve been able to stick to my calorie restriction of 1300 calories or less daily and I’ve been eating protein and vegetables.

2 days down, 28 to go. If by day 28 I haven’t seen some kind of healthy weight loss, I will go back to the drawing board. Until then, the MBHM SSRI Diet and I will be good friends.

If you try this diet along with me, let me know how it goes! Comment here, or talk to me on Facebook or Twitter!

Image courtesy of Paul at FreeDigitalPhotos.net

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: