2 years ago 💘 for day 51, 2020 with 571 words.


Sometimes I wish I had some sort of diagnosis. Some kind of tangible thing that could help me grasp why things are so hard. I thought the ADHD diagnosis brought the last missing piece, but even with it, I struggle.

I often find myself feeling understood when I read stories about people who struggle with chronic illness. If I fell into that category, I would call my current state of being a flare. My head hurts incredibly. Trying to look at things feels like stabbing myself in the eyeballs and brain with needles. The muscles of my shoulders, neck, head and upper back feel rock hard and so painful. Heat packs don't help (sometimes they do), a nap helps but as soon as I move it's right back where it was. And as I'm trying to sit in acceptance of this, I can't help but feel like it's my own fault.

Burnouts aren't supposed to last forever, they are supposed to improve. With plenty of rest, routine and time, they should get better. And although there have been moments that were much worse, I haven't felt like I've improved since September 2017. In theory, I have all the skills, knowledge, tools and capabilities to improve my situation. And yet, I fail at it. Time and again. Usually, because I'm doing too much. (I worked for 2,5 hours yesterday and later I played Pokemon even though I knew I shouldn't have). Sometimes it's because I'm doing too little. Not pushing myself to get to that next level. The pain in my back and head should become less if I just strengthen them. But I haven't been able to get myself to the pool in weeks. I try to track the exercises my PT gave me. Adjust them to my level. 3 sets of 10-second chin tucks? I do 3 of 5. Rowing movement to strengthen my back? 1 of 5 instead of 3 of 15. And even so, oftentimes it's too much. To say that I'll have aching muscles the next day is an understatement. But then again 'sometimes you have to go through the pain, in order to get better.' I'm not sure it's supposed to be this kind of pain though.

Sometimes I wish that someone could tell just tell me: The reasons you ache so much is because you have X. Try to adjust your life/movements in this manner, that might help. Instead, I'm flying blind. Too much of this. Too little of that. Not enough consistency. Not enough follow-through. Giving up too soon. Not doing enough 'joyful' things. Not being accepting enough. Not being forgiving enough. It feels like I'm endlessly trying to tweak a magical recipe to my cure. The ADHD diagnosis makes me understand why I have such a hard time concentrating or following through. But it doesn't explain the pain. That's just "A side effect" of everything else. The only thing I know is that this whole thing exist mainly in my head, despite the pain. The reason I'm failing is that I'm doing things wrong. It's a failure of personality. Simple as that.

I'm starting a program with a Reintegration coach who works with CSR centre, a centre for burnout recovery. They refer to it as "Chronic Stress Syndrome", often referred to as Burnout. They define it as a physical thing, with mental aspects. Maybe she'll finally be able to help me find what I'm doing wrong.

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By Leonie Jonk 💘

Artist & Spoonie I write about my life as an artist and as a person with chronic pain, the struggles, the rewards, the inspiration & the downfalls. Oh and occasionally the odd piece of fiction :)

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