Category: therapeutic thursdays

Am I a Hypocrite?

Posted on by Grayson

I feel like a hypocrite…

Lately, I’ve been sleeping on the couch instead of in my bed next to my husband.

There was no torrid affair with a movie star or falling out. Instead, this is all thanks to the plethora of illnesses that I’ve collected over the years. The biggest culprit as of late has changed from my mostly-controlled Systemic Juvenile Idiopathic Arthritis (SJIA) to my Fibromyalgia. With that comes allodynia, or that thing of when sensations that shouldn’t hurt you do hurt – like clothing touching your skin. Our couch is super soft and feels like a fleece blanket so, when my Fibro flares up, that’s where I live.

That doesn’t mean I slow down by any means. I do a million things from that couch: work on my masters, plan advocacy events, raise awareness of illnesses or money for new treatments, mentor others, write, run two websites, host a weekly chat, Skype or game with my sister, be a badass friend, play with my guinea pigs, pass out and snore, and more! I do sleep – promise.

I’m not superwoman. I know this. I have dealt with such bad fatigue that, when I have the energy to accomplish these things, I have to act. Call it making up for lost time, being stubborn, hogging opportunities – I call it helping others. That’s what I love to do.

Participating in such a wide variety of things contributes to stress and, in turn, pain at times. It takes away from things I might be able to do with family or for self-care. The topics I write about – relationships, self-love, sexuality, dealing with comorbid conditions, managing healthcare, recovering from childhood abuse, and more – resonate with others. They are topics that aren’t covered well by other patients, physicians, healthcare professionals, organizations, and more.

I do all of this because I know that I could have used someone like me as I grew up, as I learned more about my illnesses, to show that you can still be sassy, realistic, have a crummy backstory, and STILL live an awesome life despite rocking a replica House, MD cane sometimes.

 

I’m that person who annoyingly nags you about taking care of yourself. I do it because I love you and because taking care of ourselves is integral to living well with chronic illnesses.
Hilariously enough, I am really bad at self-care. As the idiom goes, “Those that can, do. Those that understand, teach.”
I get why it’s important to take care of myself, and I try. Living with multiple chronic illnesses and working full-time can be very tiring, especially when you’re trying to change the world too.
You know, no biggie.
What are some ways you could be taking better care of yourself?

 

Musings on My Personification of Arthur

Posted on by Grayson

I have often said over the last few years that I feel grateful for being sick since childhood. I don’t remember living really without the limitations that I have grown up with, even though they do change enough to irritate beyond belief. I have multiple chronic diseases but my fibro is currently the worst offender now that my SJIA is mostly under control.

That brings its own challenges, though, like feeling that I’ve lost a huge part of me. Arthur, as I’ve always called my SJIA, was much like a twin. There is an emptiness that comes when the thing you’re closest to is gone, especially when you have a tendency to personify it.

There is a mix of joy for some semblance of pain relief, sorrow that he’s not around, and guilt that I’m doing so well while children I know have been in and out of the hospital seriously ill and fighting for their lives.

If Arthur had come along later than kindergarten, would I feel differently about him? If I grew up in a home without abuse, would I have gotten so attached to him, to that familiar pain?

I think that I clung to Arthur and used the physical pain as a distraction from my emotional and mental distress from my childhood. Another child in a similar situation may go to a friend’s house as a source of respite, but I didn’t have friends. I was basically not allowed to have them because I could share something that happened and I’d be taken away from my mother.

 

That threat was always there.

 

Arthur was that escape for me. Stress and emotional distress bring on flares so it was easy for me to be distracted, to escape into the pain that was most comfortable to feel because I didn’t know different.

 

I did know that my household was awful, that this was not how things were supposed to be, but I didn’t know a life without Arthur.
Courtesy of Quotes Gram
Arthur, my security blanket, is tattered and worn.

 

I have to actually face everything I grew up experiencing, both as an adult and as the child in me.

 

I know I’ll be better for it and I’ve already made so much progress…

 

There are too many times where I want that blanket back, though.

 

Starting the EMDR process

Posted on by Grayson
Real talk?
I’m mentally frazzled right now.
A few weeks ago I started the EMDR process. EMDR stands for Eye Movement Desensitization and Reprocessing, and it’s a type of therapy especially useful for trauma victims or those with Post-Traumatic Stress Disorder.
Basically, this therapy is a way to allow your brain to process these traumatic events by dealing with the emotions but having safeguards in place and coping tools to help. Some tools used are lights to move your eyes back and forth, a headset playing a series of alternating beeps in each ear, or little vibrators that alternate in your hands.
It’s not easy. You can’t tackle the big stuff right away and even the ‘small stuff’ is a lot more intense than I realized.
This is not my favorite.
But it’s also good.
I can tell that it will help. It’s just a matter of getting there and being ready to process my childhood traumas… and as much as I want to get past them, it’s scary to think of going into them. I feel like I’m standing at a door that sits ajar, behind which there are screams. I know I need to go in there to do something but it’s scary.
It’s sad when you can compare your life to a scary movie. Maybe that’s a part of why I like Scooby Doo and scary movies though.
In Scooby Doo, you always knew the baddie was a person.
In scary movies, you know it’s something inhuman.
Both ideas are comforting in different ways. I want to believe that my mother is human, that her mental illnesses have driven (and still do) her to do some awful things. But she’s done some unspeakable things that don’t lend to being human either, so it can be easier to vilify her and turn her into a demon.
Neither option is awesome.

 

Therapeutic Thursday: Swimming Class

Posted on by Grayson

This month I took my first-ever swimming class.

I was so anxious before the first class on the 9th. I couldn’t sleep the night before though that’s been the norm lately too so maybe it’s unrelated.

I had panic attacks upon panic attacks in the days beforehand.

I should have learned to swim as a child. My uncle tried to teach me for a while when I was maybe eight? Life got in the way. Had I been in real school versus being “homeschooled” I would have learned; had I lived in a non-abusive home I would have learned.

The class itself went great! I did better than I thought I would. But it brought up so many emotions, so much resentment. I am so disappointed with choices that were made (or not) for me as a child.

I’ve had to teach myself medical terminology in a rapid amount of time. I’ve had to learn how to navigate insurance quickly. I’ve even had to deal with LITERALLY rebuilding parts of me that should never have deteriorated in the first place.

I tackled riding a bike on my honeymoon.

Swimming has been the last big issue, the final sticking point regarding my maltreatment in my childhood. I’ve worked on everything else, just a bit, already.

This is the final way to throw the motherly shackles off, to kill the fear monster she created, and to take back my life fully.

I could never do it without T and my sister, never.

 

Fear of success

Posted on by Grayson
I’ve never watched Breaking Bad, but this quote hit home

In the last few weeks, I’ve done incredible things that I couldn’t see myself doing a few short years ago. A lot of them are things that I wanted deep down but couldn’t imagine myself doing… and yet, here I am.

I did have a lot of issues that I had to work on to get here. Timing wasn’t great for working on those things earlier in my life. My depression sucked the life out of me.

I can list a million and one excuses or explanations, but I think a large part of things was a fear of success.

I think that I’ve wanted to play with the big kids but didn’t think I was old enough if that’s a good example.

I’ve been working on self love and care and all that good stuff for a while now. I think that it has helped me to see myself as worthy of love, attention, and being a bigger player in things than I’ve been before. It’s also helped me start school again (though having a million deadlines within the first three days has murdered my sleep).

It’s also helped that I’ve been hand picked to do some things and work on some projects – and go to MedX in a few weeks. I’m excited, but nervous for sure. I’m not entirely sure that I’m prepared for the experience or the aftermath. This new blog on sex and such on CreakyJoints has taken off already and I’ve got some other exciting things coming out soon.

I finally feel like I’m ready. I have no more excuses and I’m not afraid.

Speaking of fear (haha) I hope that you’ll join me on my MedX journey Sept 24-27! I’ll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.

 

Therapeutic Thursday: link roundup

Posted on by Grayson

Like with chronic physical illnesses, mental illnesses bring up questions of disclosure. For one, should you tell your boss? The author of this article says yes.

If you love someone with depression or anxiety, you should definitely check out these 11 ways to be an effective partner.

My spoon photo project is ongoing. I can only hope that it can have as much of an impact as this project on what it’s like to live with depression.

Also I hope that you’ll join me on my MedX journey Sept 24-27! I’ll be live tweeting the whole time so hit me up@kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.

Therapeutic Thursday: I am mentally ill, and that’s okay

Posted on by Grayson
It’s one thing to discuss the limitations of a mental illness and another to stand up and say that I am mentally ill. Mental illness has so much stigma associated with it. It’s easy to pretend we’re okay when we interact with others because they can’t see – just like with physical invisible illnesses.
A couple of times now I’ve engaged in conversations on social media about remembering to be inclusive of those with mental illnesses when we’re discussing or designing things for physical illnesses. Each time I’ve gotten hit with personal crap that didn’t need to be dragged into the situation – and this is from other chronically ill activist types.
Each time I’ve gotten comments about how, essentially, I need to get over what happened, see the great things that I’m doing, and move on to a more optimistic mindset.
I need to point out quickly that none of these things would be said if I was a veteran or had been through a major publicized tragedy. But nah, just grew up being beaten, belittled, and mind-fucked, so no biggie here.
Sigh.

Those of you who know me in real life know that I’m actually annoyingly sweet and optimistic when my mental illnesses aren’t getting in the way. I have to stop myself from running when I have a good day in the middle of a flare because surely I’m fixed now! I have to calm myself down when seeing movies because I get so excited that I bounce up and down like a small child.

I am SO much the heart from the heart and brain comics that it isn’t even funny.

And yet these people who are supposed to be about helping each other attack others who aren’t into optimism or positivity 24/7. It’s so nauseating and I don’t understand why this continues to happen. Suggesting that people remember to be inclusive or stop using ableist language isn’t an attack – and it doesn’t warrant responses that feel like personal attacks. That’s already something that I sadly get in the chronic illness community because I refuse to be inspiration porn or happy all the time dealing with my physical illnesses.

I’ve also had it pointed out to me that I still accomplish cool or big things, as if those things wouldn’t be able to be done with mental illnesses and I must not have it as bad or not be ill. If any of you who are thinking that are reading this, know that some of the best artists and scientists in all of history lived with these illnesses. That does not make them any less ill.

In our big community, people attack each other for a lot of things – positivity, inspiration porn, physical activity level, not being disabled enough, etc. People jump to each others’ aid when this happens, and yet do nothing when the conversation is about mental illness. I guess it would change things if that was something that happened, but it isn’t. Nonetheless when these things happen, it really makes me question why in the world I’m involved with this shit. Honestly.

It makes me question every single thing that I’ve done since 2007 to become more involved in the illness community. It makes me question going back to school, being involved in these orgs and groups, and even blogging. Sometimes this even comes from people who I’ve helped a good amount and it makes me question my decision making skills.

I’m sure some will respond that I shouldn’t let people get to me, that I’m the only person who can make myself feel inferior, and other bullshit.

I have mental illnesses. These don’t make me any less of a person but, unfortunately, they affect the way I interact with others. My brain is wired – literally wired – differently than someone who hasn’t dealt with depression or anxiety or PTSD. On scans, my brain looks different than yours because of the abuse I’ve lived through. I cannot change that any more than I can change my eye color – I can cover it up with contacts and not tell anyone, the truth but it’s still there.

Even as this post goes up, I’m getting ready to spend time with other juvenile arthritis peeps at the JA conference. I’m nervous about who I will interact with and how I will portray myself. I’m worried that I will have an anxiety or panic attack and everyone will know. I’m worried about saying the wrong thing and making it obvious I have shit social skills. I’m worried the abuse that I’ve lived with every single day will pop up and make it hard to do what I’m there to do – interact with others.

I worry about this more than anything – more than lines at theme parks or applying enough sunscreen or hurricanes or delays in our flights or flaring up from going or the humidity down in Orlando.

I worry about this so much that I can barely sleep. The sleep I do get isn’t restful. My body is on edge constantly, which makes my physical illnesses angrier. I worry about it so much I don’t speak so much to my husband as I do to our piggies because I know I’ll bring this all up and I don’t want to talk about it.

It affects work. It affects home. It affects my doctor and therapy appointments. It affects the very little social life I do have. It affects my other illnesses. It affects my self-esteem. It affects how I parent my guinea pigs or relate to my husband or talk to others in my family.

If you want to learn more about mental illness, ask kind questions of others. Don’t attack them or turn conversations about general topics into specific things about that person. If you want to be helpful, use kind and calm words. We all jump to someone’s aid when there is a misconception about their physical illness – why do we jump to the attack instead when it’s about mental illness?

Next time you feel like questioning someone’s illness, please remember how shitty it feels when you’re on the receiving end.

Therapeutic Thursday: Juvenile Arthritis Conference

Posted on by Grayson

It’s almost time!

This Saturday Theron and I will board a plane to Orlando to spend a few days exploring before the JA conference!

We plan to spend a few days at Universal because HARRY POTTER YOU GUYS.

I can’t wait to try butterbeer and all the fun things. Oh and we’re going to Busch Gardens too!

I can’t wait to see how the little cats they had a few years ago have grown. Watching Wildlife Docs is making me even more excited.

Then I get to meet up with this hottie, Emily of Chronic Curve, who is practically my galentine soulmate. Just saying.

Honestly this already is so much coolness that I’m freaking out a little bit.

But THEN…

I get to go hang out with JA families and cool peeps from Arthritis Introspective again!

Honestly I just hope I can keep up with all this! I tend to get overexcited and fill my plate a little much with these types of things.

When I get back, I’ll be starting kineret. We didn’t want to start it before I went in case I had a bad reaction or someone didn’t get the memo about not bringing sickness to the event with kids on chemo and biologics.

I’ve written up a ton of blog posts so you won’t have to miss me when I’m galavanting around and enjoying more Harry Potter land than you!

Therapeutic Thursdays: mental health edition

Posted on by Grayson

If you’re an introvert, you may feel very out of touch with the world around you at times. I definitely am what I’d call an extroverted introvert (yes it’s a real thing) but I’m still an introvert nonetheless. I’d rather go out to eat and then watch Food Network or Netflix with y’all than go do a ton of things. One of the biggest things that always reminds me of my introverted nature is that I HATE talking on the phone unless I’m super close to you. Even then, it’s not always my most favorite thing… unless you’re my sister really.

If you’re an introvert, it’s likely you’re also a fixer like me. We tend to keep running and running until we’re out of gas. In the last year I’ve gotten better at that and I hope that it has helped to remind you – fixer or not – of how important it is to set boundaries and take breaks.

The movie Inside Out has a lot of people thinking about emotions and how we teach our children about them. Emotional education could be the most important that we can provide. I didn’t get that and I can say that it would’ve helped immensely.

If you haven’t experienced an anxiety attack, check out this brave video. Casey wanted to record himself during an attack so that he could raise awareness of what it’s like. Kirsten King with Buzzfeed recently did a project with drawings about anxiety as well. Check out this piece on Smart Girls as well. Sometimes anxiety comes off as overthinking.

Demi Lovato has opened up recently about living with Bipolar Disorder, the mental health stigma, and how important it is to have a great support system.

If you need a break after that, check out these cool motivational posters for people who hate doing stuff.

Therapeutic Thursday: high pain, bye pain

Posted on by Grayson

Back on the 15th, I left work early because my crip hands were spazzing out and I was hitting 8 and above on the pain scale. I tried to be patient first with it being the first day off pred, but nope.

Driving home sucked because my hands weren’t wanting to bend. I parked slowly and walked up the steps to our apartment while pain just kept getting worse and worse. Finally, I practically collapsed in front of the guinea pigs and pet them while I just bawled.

I kept thinking the following in an endless loop:

  • Useless fucking crip hands
  • I wish it was my legs – at least I can be productive without really using those!
  • Why did I think I could still work?
  • Why did I think I could amount to anything?
  • I can’t parent these piggies well let alone a fucking child
  • What the fuck was I thinking getting married and thinking about a family and starting school soon and what the fuck??
  • I don’t want to die, but I just don’t want to *be* with this pain anymore
Save the first one, none of these were really my thoughts, but the last one scared me. I got up and took my NSAID and a zohydro – a precious narcotic that I only reserve for the worst pain.
I brought it up in therapy that week and my therapist was insistent that there were ways to visualize in a way to help myself feel better. This includes thinking happy thoughts like petting the piggies or watching Jaq popcorn everywhere. It helped for my mental anguish but didn’t really do anything to help with the physical pain.
I don’t know what to do about this. It was the worst day I’ve had in a long long while pain-wise. I need to start kineret like NOW. Otherwise I’m worried this will keep being the norm.