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Being Kind to Myself

light of knowledge 003Chronic illnesses are assholes. My most current diagnosis happened just over a year ago and was a huge relief after years of reacting to weird things and nothing really making sense to me or my team of amazing doctors. However, this is a tricksy disorder. One that I can take all the meds in the world to prevent reactions but I might still have them if I already have an abundance of histamines floating around in my body and I’m exposed to a trigger. It’s also caused a lot of pain, inflammation, and brain fog that has made writing difficult. At the height of symptoms before the diagnosis, I could sit at the computer for hours and not write a thing, and not for lack of trying. I tried, but brain fog will mess you up. Not being able to think of the words I know as well as not forming coherent sentences will make any writer frustrated. I think I was beyond frustrated though. I was angry that I was unable to do what I love.

Then there were days where I was able to write and it felt like things were flowing, but then after spending a week on one scene alone I’d decide it was unusable. All that time spent on something that would not make it into the final manuscript. Talk about frustrating.

What was I doing?

I gave in. I stopped writing because the stress of being unable to made my mast cell disorder worse. Yeah, stress is a trigger. Good times.

We’ve been doing med changes one at a time and I finally got to the point where I could start writing again earlier this year. But I would be productive for a day and then nothing for a week. Rinse. Repeat.

Fast forward to a few weeks ago. After having a short period of productivity, I had a couple of weeks of not being able to at all again.

Have I mentioned the frustration and anger?

And then, by some sign from the universe, this Tumblr post kept popping up on my Facebook feed:

Terry Pratchett

Image description: Tumblr user mikeyshackwriting: I saw a post talking about how Terry Pratchett only wrote 400 words a day, how that goal helped him write literally dozens of books before he died. So I reduced my own daily word goal. I went down from 1,000 to 200. With that 800-word wall taken down, I’ve been writing more. “I won’t get on tumblr/watch TV/draw/read until I hit my word goal” used to be something I said as self-restraint. And when I inevitably couldn’t cough up four pages in one sitting, I felt like garbage, and the pleasurable hobbies I had planned on felt like I was cheating myself when I just gave up. Now it’s something I say because I just have to finish this scene, just have to round out this conversation, can’t stop now, because I’m enjoying myself, I’m having an amazing time writing. Something that hasn’t been true of my original works since middle school. And sometimes I think, “Well, two hundred is technically less than four hundred.” And I have to stop myself, because – I am writing half as much as Terry Pratchett. Terry fucking Pratchett, who not only published regularly up until his death, but published books that were consistently good. And this has also been an immense help as a writer with ADHD, because I don’t feel bad when I take a break from writing – two hundred words works up quick, after all. If I take a break at 150, I have a whole day to write 50 more words, and I’ve rarely written less than 200 words and not felt the need to keep writing because I need to tie up a loose end anyways. Yes, sometimes, I do not produce a single thing worth keeping in those two hundred words. But it’s much easier to edit two hundred words of bad writing than it is to edit no writing at all.

I finally realized that part of what was blocking me was myself. Yeah. I was getting in my own way.

I wasn’t being as kind to myself as I thought I was. Because the kindness I was extending myself was overshadowed by a negative feedback loop playing in the background so softly it wasn’t recognizable.

Have you ever been listening to music on your computer and you’re opening websites to read articles, find recipes, or whatever and something feels off about the music, but you can’t quite put your finger on it but you continue, thinking maybe you’re imagining things? That’s been me for the last few years and pretty much every time I attempted to write.

Finally, you close some tabs and you realize that a video had been running on autoplay in one of those tabs and you think, “I’m not going crazy. There really was something else playing.”

After a couple of weeks of not being able to write (chronic illnesses are assholes) the last couple of weeks have been productive. Not wildly productive, breaking 1k word counts. More in the sense that I was able to write with a clear sense of where the scene is headed, how it needs to change from the original, and what comes next. One day after the last time I saw the Tumblr meme above I left myself a kind note with a reminder of what to focus on the next day. Seems like a no-brainer, yeah?

The norm is I write myself snarky notes, and anyone I’ve beta read for knows I can be pretty snarky. Not mean snarky, all in fun snarkiness. The problem with that is when I go long stretches without being able to write because of brain fog or pain or both I have to work extra hard to beat down negative self-talk as soon as it starts. Because what am I if I’m not productive?

That’s the problem with chronic illness. We’re socialized to believe our worth lies in our productivity and what we can provide others rather than we have worth because we exist. Everyone with chronic illness, physical and/or mental, can relate to that feeling of having no worth when we are physically/mentally unable to do anything. We see the glazed look in people’s eyes when we try to share our struggles, and so many of us end up struggling in silence to avoid that glazed look or the inevitable unsolicited advice that is nowhere near helpful. We extend kindness to others and don’t get the same in return. We have to be kind to ourselves which is a struggle in itself as well because it’s counter to negative self-talk. The instinct is to internally put ourselves down because we are worthless because we aren’t producing anything. It’s hard for us to see that we have worth just for existing because that’s not what we’re taught as we’re growing up.

So here I am. Leaving myself kind notes in my manuscript before I turn off the computer for the day. I’m better armed against said negative self-talk the next day. And by kind, I don’t necessarily mean being positive about everything. Not at all. I give myself praise. “Hey, you did great today despite having a rough start and feeling like crap.” Acknowledging the stumbling blocks and the fact that I was able to get around them has been key. Do I hit 400 words every day? No. There have been days where my brain just wouldn’t cooperate. For the most part, though, I’m hitting it and sometimes continue. Reminding myself that the day before there were things out of my control hindering my progress is what shuts down the negative self-talk. I can’t tell myself I was lazy when I wasn’t. I genuinely couldn’t function.

kindness post

Image description: cropped photo of one typed line on a computer screen highlighted in bright green. Text reads: keep it up, you’re doing great.

I wasn’t sure how my little experiment on myself would turn out. The worst that could happen was things stayed the same. But they didn’t. They’ve improved and I have to thank everything that pointed in the direction of mikeyshackwriting’s Tumblr post for it.

To those of you who are in this same struggle, you are worthy no matter what. You do not have to live up to society’s expectations to prove or keep that worth. It is yours and no one can take it away from you. Just remember to extend the same kindness to yourself that you grant to others.

 
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Posted by on September 26, 2019 in Uncategorized

 

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Giving Up is Not an Option

EditingI embraced my full-time ability to write last year after regaining energy levels from my first bout with Adrenal Fatigue Syndrome. I quit my job months before because even with reduced hours and working on my ability to manage the mental and emotional stress, the physical stress of the work took its toll. I was in pain almost 24/7 and fighting off infection after infection. My sleep felt like it was non-existent even when I was lucky enough to get eight hours. I was so exhausted I wound up crashed out on the sofa after sitting down to watch TV.

I felt better enough after not pushing myself day in and day out that I realized it was time for me to start doing what I wanted to do. I focused on my blogs at first. Then, I returned to my first manuscript.

Next, Sjögren’s Syndrome struck. For those of you who haven’t followed me on Hunter’s Lyonesse, I was diagnosed with this autoimmune disease in 2008, months after my hypothyroidism diagnosis. I tested positive for antibodies, but never presented with symptoms. Until last year. This means my body attacks my own tear and saliva glands. My eyes were severely dry as was my mouth. I had to keep water with me wherever I went because my mouth was so dry; and sitting at the laptop too long dried out my eyes faster than if I was not staring at a screen.

At the same time, we discovered food allergies and intolerances that developed over years of not being diagnosed with Celiac sooner. It created gut permeability and while my body decided to attack some of the foods that were escaping through the gut lining, it was also reacting to other foods as if they were allergies (but no anaphylactic reactions). I had to deal with keeping my eyes and mouth moist while removing nine more foods from my diet on top of the gluten, dairy, and eggs. My body is on overdrive because it spent decades attacking gluten and once I took that away, it attacked other things.

After a year of focusing on treating ALL my allergies (not just the food) and getting acupuncture monthly to help with the Sjögren’s symptoms, I’m in a much better place than I was a year ago. But there are still problems. I still can’t sit at the laptop for long if I’m wearing my contacts. I can’t drink alcohol without feeling the dry eyes and dry mouth the next day. I can’t eat grains of any kind without my fingers being stiff and swollen the next day. Brain fog hits me when fatigue from any one of my illnesses strikes. There are days the brain fog is so bad I can’t form a single clear thought and have to walk away until it lifts. Right now, my brain is telling my body to attack Vitamin B so my body is pretty much killing it rather than using it like it should.

I work between the laptop and pen and paper because of my limitations. I try to be more aware of how long I’m at the laptop before I get up for a break. But we all know that when you’re in the middle of writing something to get it out of your head, you can’t be bothered to get up for a break. When I don’t do that, it comes back around the next day with more stiffness or more dryness.

The food reactions that get in the way: debilitating headaches, stomach pains, and non-stop itching to name a few. Plus, I developed a problem with my shoulders from sitting so long writing. It put me out one weekend because my right arm was nearly useless. Chaz had to finish chopping vegetables for me one Saturday for dinner. I went five days straight in pain and begrudgingly took ibuprofen on the fourth day (ibuprofen exacerbates gut permeability) to alleviate just a little of it. Thankfully, my doctors fixed me up on the fifth day.

You might think it’s no big deal and that I should be able to write with brain fog or a headache or stomach pains or non-stop itching or shoulder pain, but this assumption means you haven’t experienced any of these things. Unless you experience brain fog for yourself, it’s difficult to grasp. It’s like getting lost in a really thick fog in which you can’t see your outstretched hand in front of your face and you try to feel your way around while disoriented but you get stuck in a deep patch of mud instead and you just want to lie down and take a nap because all of that was so exhausting. Yes, that run-on was intentional. Writing is the ability to craft words. When brain fog takes over, you lose this ability and it’s like your IQ dropped a hundred points. Trying to tell Chaz what I want or what I need can be a trying experience…for both of us.

It’s frustrating when I sit and write using pen and paper and I can’t keep a handle on my pen. My grip loosens even as I tighten it…and there goes the pen thwacking on the desk. Sometimes it’s because of the inflammation in my fingers. Sometimes it’s the pain in my shoulder. It’s one thing to realize before you sit at the desk to write that something is off and writing isn’t a good idea. It’s completely different to be wrapped up in the process when your body turns on you and everything goes awry.

It took me a month to complete the first draft on my second manuscript, and that was with an insane week of banging out four to six thousand words a day. The ideas and words just flowed that week. I’ve been working on the second draft for two months. I feel like I should be done with it by now and I find myself getting frustrated with that. Then, I stop and remind myself that it’s okay, each day I work on it is one day closer to a finished second draft. I’m doing the best I can each day and that’s all I can do. The alternative is to give up and that is not an option.

 
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Posted by on March 14, 2014 in Uncategorized

 

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