With chronic illness, you normalise so many things most people won't ever feel.

With chronic illness, you normalise so many things most people won't ever feel. You normalise high levels of pain, being exhausted, medical procedures and trauma, needing to rest after a shower. People see you surviving with an illness, but not all you had to normalise to do so.

— Nia | The Chronic Notebook (@chronicnotebook) January 21, 2023

On Talking to Chronically Ill Friends by Sophie Strand

Things to Say Instead of “I Hope You’re Feeling Better” or “But You Look so Good!” by Sophie Strand

On Talking to Chronically Ill Friends

Read on Substack

When it's just easier to die.

Article on CTV online about those suffering from long-Covid, and chronic mental illness seeking medical assistance in dying.

The government as a body is telling people that they're willing to assist them to death because they don't have enough money to live with dignity. That is a pretty clear signal to me that, unless you are able-bodied enough or able-minded enough to work to produce profit, then you don't have any place here.

This really hits home, this is something I've thought about often. If my health keeps going, and it's just too much of a struggle, I'd liquidate my life and just end it as painlessly as possible. 

Being hospitalized was so difficult, and I had my mother to help me. Alone, I don't know if I could do it. The financial strain. The stress. The loneliness. The support systems are just not in place. You need money. 

 I saw some tweets pass about folks being denied help from disability programs, but being approved for medically assisted suicide. What message does that send? 

People with Disabilities are choosing to die through Medical Assistance in Dying (MAiD) because they can't access the money they need to live.

Does that sound like a society that is fair to you?

— Naheed Dosani (@NaheedD) July 12, 2022

right now in canada there are human beings having to choose medical assistance in dying because they cannot afford to live. they cannot afford rent. they cannot afford medications. they cannot afford food. the pathologies of poverty are killing people. what about this is just?

— Andrew Baback Boozary MD (@drandrewb) July 12, 2022

It's a bad time for me.

Well, fuck me! It's been a rough week.

First, let me share this excerpt from a social media post on Friday evening that'll really help set the tone:

I’ve had a terrible last 48 hours. I’m not feeling that much better, but I thought I’d reach out to those struggling and just say I’m sorry we’re all on this shitty boat together. 

An ongoing sore spot for me is my ability to take care of myself financially. If I let myself focus too intensely on losing an income and my ability to find and keep stable work - I have a panic attack. A bad week at work triggers many things in me. These days though it’s just deep dread and self-loathing. It’s shame and it’s guilt and it’s a weight in my chest. I’m still alive, and I know that’s something, but these days it’s painful. I feel limited and broken and incapable of functioning. I’m not the architect of depression, nothing I feel is original, but I feel so firmly inhabited by it. Usually haunted but these days possessed. 

It is such an awful thing. It’s very nature made to make you feel weak, whiny and spoiled for even naming it. What a luxury to have such a convenient, invisible disease. One that robs you of ambition. One that keeps your decisions safe and your hopes for yourself soft and low. I’m sure it’s the depression, and the exhaustion that marries it that keeps you in a lacklustre suit and not your utter lack of discipline or work ethic. And when you try, and things get bad again you’ll remember why you try and keep your life small. You’ll be reminded by everything in your life. Because everything you love and celebrate on a good day screams your incompetence back at you on a bad one. They’re all things you need to take care of - but can’t. 

Your dog thinks you’re a downer. Your life is too big, you can’t take care of it. This space you occupy is filled with things you now want to sell - to save yourself from becoming the wretch you feel you’re destined to become. 

This is only some of it. Last night was worse. My heart is racing and my mind with it. I am so sick of this invisible disease and I’m furious and uncontrollably discouraged about living where any and all care I could possibly access takes money, leisure time and a tremendous amount of energy. 

I hope pain is a limited resource and when mine is great it’s lessened for somebody else.

Things aren't going well with my new job. Initially, I thought it was friction with my manager that would pass, but it turns out I was incredibly naive about that. My manager's boss met with me this week in a meeting I'm still unclear on. She said they were wondering if they should re-sign my contract when it terminates, or if they should even fulfill my current contract, because of a list of points.

The main point being I had a huge problem with my manager and sick-days. I had 5-day a week medical treatments at a hospital, and it meant going over my allotted sick-day credits. I took some in vacation time, and it just caused a huge problem.

Then there's an appointment I took my mother to, that was in my name, not hers, that I marked as a family day, and should not have. Having apologized for the misunderstanding (my misunderstanding of what constituted a family day) the issue was constantly brought back up as if I was attempting some kind of serious fraud. Which I don't get. My manager was so aggressive and odd about the whole thing when I asked questions because I didn't understand it was like she was trying to trap me in a lie. It was so hostile.

She then went on about second chances and her experiences in the department, and if I had anything to say, but all I did was cry. She told me I could feel safe and tell my side of things but I couldn't. I told her I felt it was more than professional (my manager does not like me) and that I was upset because she was telling me I might lose my job.

There are a lot of examples of my manager not liking me, and why I have the feeling it's personal. I even spoke to someone in HR about it months ago. I've spoken to colleagues about it, and they've noticed it as well. If we all went out to lunch together and came back 15 minutes late, I would be the only one who would get an e-mail about it. Once, while "standing guard" at a door, she saw me on my work cell phone and told me to put my personal cell phone away. I corrected her, and said it was my work phone, and she got irritated and snapped that it didn't look good and started getting mad at me so I stopped trying to talk to her about it, even though my colleague openly admitted to being on his personal phone the entire time, and got no comments from her. It's a ton of little things like that. If the team needed something, there was a time we tested what would happen if I asked versus someone else asking. And, in group meetings, I would often say things that were dismissed, or I was responded to as if I was lying, so one of my colleagues would have to agree with me, and repeat what I was saying or else what I was saying would not be heard.

The main thing that upset me the most was early on when I told her we needed professional movers to move boxes because two of my colleagues were going to burn out, doing physical labor that should not be part of their job. She rejected the comment and was very snide with me, saying it's what we're paid to do. When I went back to my colleagues and told them that, one broke-down. She ended up giving her notice the next week. As a reaction to the near burn-out and notice, my manager hired some part-time movers to help us. But it took someone quitting. When she wrote out to the manager her notice, she never got an actual response, and it was an ongoing issue of not feeling heard for most of us. So I did not trust her from the get-go, which she no doubt must have realized.

I was also reprimanded because there was a day when we were all making boxes and we had no black permanent markers left. I asked to order some, and was met with hostility and suspicion, did we really need them? It might take a while, could we get by without them? We're a team of 4-6 making hundreds of boxes a day - the reaction was nonsensical. So I went to the office supply store and got markers. And I said if I'm reimbursed fine if not, that's okay too. That did not go well.

A lot of the friction has been around me taking liberties I shouldn't be taking anymore now that my employer is the federal government. Apparently, all those bureaucratic jokes about it taking 4-6 weeks before your pencil order comes in isn't a joke. It's something I have a lot of trouble with. Clearly.

During the meeting with my manager's boss I mentioned that when I heard she was leaving I was hoping to benefit from a fresh start with the new manager, who I already prefer. Having said that, the department clearly has a laundry list of issues with me, which isn't something I can easily get over or look past.

She said we'd meet again in a few weeks with my new manager. That didn't leave me feeling great. For now I'm going to just keep going to work and doing the best I can, while also spending as little money as possible since it feels like I'm going to lose my job.

Sure, maybe part of that meeting was to get me to smarten up and move forward, but I felt it was more in line with her doing her due-diligence before firing me to keep the union happy. A union I've never seen or heard from by the way.

If this happened on Thursday, I got home in a panic. I cried the entire bus ride home and most of the night. I have cried more in the last 6 months, at work, than I have in the last decade of my life. I asked a friend if I could text her to "let things out" in order to attempt to decompress a little. I know what happens when you call suicide hotlines. They tell you to call a friend if you can. I guess it's an attempt to get you back in your "real life" with people who actually know you, but what it feels like is a dodge. It all feels like a dodge.

I went to work Friday, kept busy with the job, and came home Friday night quite well rooted in a mix of situational sadness and deep depression.

1. I am not capable of having a decent job because I'm a piece of shit.
2. I am unable to take care of myself.
3. I am 34 and dependent on my mother.
4. If my mother passes before me, I'm fucked.
5. I shouldn't have adopted my dog, I'm a fuck-up. 
6. I don't deserve a job with actual reasonable working conditions.
7. I have an undeserved ego/pride.
8. I am incapable of holding down a job.
9. I need to get "worse" jobs that I deserve.
10. I will never be able to afford care (therapy, classes, yoga, self-care). 
11. My inability to understand the complexities of all the interactions with my manager over the last few months clearly shows I have a diminishing mental capacity. 
12. I am a drain on my mother.
13. I am a drain on my friends and family.
14. I am a disappointment to my friends and family.
15. This was my one chance to get into the public sector and I fucked it up. 
16. I would need to live in affordable housing, but my mental illness is borderline severe so I will never be helped by any official social services.
17. Any care I could access would have to be paid out of pocket, which I will never be able to afford, so I will never access it. 
18. All of this was avoidable, but I was too nonchalant because I'm dissociative. 

It goes on and on.

At this point, 2-3 days after the shock of it all I'm calmer, so maybe this makes a little more sense than the sheer panic of Thursday and Friday. It's quieter now.

Yesterday I went to the dog park, ran some simple errands and watched documentaries all day. I watched I Am Not Your Negro and I Am Another You, which hit close to home since it was about being homeless due (in large part) to mental illness. Great timing on that one.

Today I went to the dog park, did some laundry and might watch another movie or cook something.

Sometimes I fall into this crevasse of thinking about losing my job and my heart starts to race.

Other times a feeling of uselessness just slowly covers me up.

It's not a great time. It's not a good time. It's a bad time for me.

Pain.

Wired has a piece on pain:

Pain has always been the price of being alive, but according to the National Institutes of Health, more than one in 10 American adults say that some part of their body hurts some or all of the time. That’s more than 25 million people. In study after study, more middle-aged Americans than ever before say they suffer from chronic pain. Because of that pain, more of them than ever before say they have trouble walking a quarter mile or climbing stairs. More say they have trouble spending time with friends. More say they can no longer work.

... 

IF YOU BURN yourself on a stove, it hurts. More specifically, the nerve cells in your hand sense the heat and send pain signals to your spinal cord. The signal then travels up to the brain, which instructs you to howl with pain or issue the appropriate profanity. This is what’s known as acute pain. It can stab or pinch or shock, hurting like hell and telling us to stop doing what we are doing, take care of ourselves, get medicine, get help. The medical community knows how to treat most acute pain. Temporary prescriptions for opioids dull the sting from surgical incisions; anti-inflammatories can mask the discomfort of a sprain. Acute pain persists, but it also goes away. Acute pain is also easier to empathize with: Show someone an image of a pair of scissors cutting a hand, and the observer’s brain will react as much as if their own hand were being pinched.

Chronic pain, on the other hand, is a phantom: an enduring ache, a tenderness that does not turn off. It can be inflammatory (brought on by diseases like arthritis) or neuropathic (affecting the nerves, as in some cases of shingles, diabetes, or chemotherapy treatments). Some chronic pain never even traces back to a coherent cause, which makes it that much harder to understand. Give us broken bones, burn marks, blood—in the absence of proof (or personal experience), the hidden pain of others is easy to dismiss.

It's been an odd week for me.I missed work on Wednesday. Call it a "mental health day" I was in bed. Depression doesn't care. Anyway, check out End Pain Forever: How a single gene could become a volume knob for human suffering, by Erika Hayasaki.

Chronic pain, choice and the West Coast League of Lady Wrestlers.

*This personal essay is a guest post by a good friend of mine, c.*

Chronic pain, choice and the West Coast League of Lady Wrestlers

“I was surprised at how mobile you were given how you talk about your body”. Over the weekend I wrestled in the Garden City Smack Down with the West Coast League of Lady Wrestlers. I got on stage, swung a foam bat around, got picked up, got beat up, snarled, kicked, and screamed. It felt amazing.

When a loved one made that comment to me the morning after the match, I felt defensive. Did the physicality of my performance somehow mean that I was no longer living with chronic pain and the accompanying fear of re-injury? I felt like mobility was being prized above the fact that I was actually really strategic and smart about the moves I chose; practicing for hours at home how I could fall in staggered steps to reduce the impact on my body while still putting on an entertaining show; how I designed my character to have a bat in order to give her upper body more strength since I can’t punch, pick up, or push my opponent; and how we were so selective of the types of upper body impact we had in our match. But most of all, the comment, and so many other comments I hear regularly, underline the fact that living with invisible chronic pain is a constant battle of reaffirming my personal boundaries and having to justify the choices I make about my body.

Having a space in the ring to perform strength and physical power felt so damn good. These are two things I have not felt for a few years since I was injured. Embodying my character and throwing down with my (amazing) wrestling partner was a risk I wanted to take. It’s my choice to decide if, when and how I want to risk hurting my body, as it should be for everyone. But because I choose to risk pain today, it doesn’t mean my disability has disappeared. And it doesn’t mean I am open to being questioned about the decisions I make with my body. When I ask for help, or say no, it’s because I am choosing to conserve the little energy I have left, because I don’t have the capacity to deal with the physical and emotional pain at that moment. And if I choose to risk it, that is for me alone to decide.

I decided to participate in the West Coast League of Lady Wrestlers about a year ago, when I saw the Velvet City Rumble. When tickets went on sale the first thing I had to check on the event listing was if there was seating. I was worried about what kind of back support the chairs had, if I would be able to sit for the whole match, if I would block the people behind me when I had to get up every twenty minutes to stretch because the pain of sitting was too much. Sitting sucked, as it always did for the first two years after the accidents but the show inspired in me things I hadn’t felt since moving to Victoria from Montreal. At that moment, I decided I would wrestle in the next year’s rumble. I even thought of my character.

In 2014, two months into moving my entire life across the country, I severed several ligaments in my spine, resulting in debilitating pain in my neck, shoulder and thoracic area. A few months after that, I got whiplash, complicating my existing injury. The resulting pain meant that simple daily tasks like lifting the kettle, a frying pan, even brushing my teeth, was so painful, that I was forced to adapt every daily task, and rely on others around me for constant help. While I was avoiding the pain, I was also losing muscle mass. While the level of pain has slowly decreased over the years with countless hours (and dollars) of therapy, I have about 30% of the strength that someone with my build would have on average. The most physically demanding part of my match was holding my 1lb foam baseball bat in my right arm and dancing with it (yeah- the visual of this may sound silly but it was really tough in the ring!).

While I will likely never be able to carry a hiking pack again (a big part of my life pre-accident), and I can’t hold my partners hand on my right side, and I am working on adapting a bicycle so I can hopefully cycle again, I also live with a ton of physical abilities, and experience and participate in able-bodied privileges every day. My pains peak and recede depending on stress, and what I choose to engage in. For a lot of things, with the help of others, I experience life in a lot of the same ways as before the accidents.

My limited strength does mean that I am constantly asking others for help and saying “No I cant do that” and often repeating, “No, I really cant do that”. When those moments happen I am overwhelmed with feelings of guilt and shame because I feel that I am not participating equally in the tasks at hand. I have to remind myself that the world is a better place when we forget about over simplified notions of equality and rather focus on how we can each use our privileges, skills, and abilities to support one another when we can (or lifting that heavy thing up for someone else because you can) so that everyone has access to participate in whatever they want, in their own way, without judgment.

Asking for help is already really fucking hard. When I ask for help picking something up, if you’re able, just do it; referencing how mobile or strong I appeared on stage (or yesterday, or the week before) is hurtful and undermining because what I am hearing is “You chose to be in pain then why cant you chose to be in pain now?”. That is not your choice, it is mine, and mine alone.

Thanks to the West Coast League of Lady Wrestlers and my wrestling partner for all the heavy lifting and reminding me of the other parts of me that are really strong. 

A proclamation of inflammation.

This morning I had a doctor's appointment. This past November I saw Dr. Rishi at his new clinic, and he said it was time for my yearly blood test, and I mentioned testing for inflammation, since my mother has been struggling with that recently.

We went over my blood test results, and we've finally stumbled across something that isn't right. I can understand that to someone who isn't sick, or who doesn't feel like shit, that might sound off. But if my bloodwork points to there actually being something wrong with my body, it validates me. I'm not entirely crazy, I do have symptoms and difficulties that stem from somewhere.

According to Dr. Rishi, my blood's sedimentation rate was alarmingly high.

According to Wikipedia:

The erythrocyte sedimentation rate (ESR) is the rate at which red blood cells sediment in a period of one hour. It is a common hematology test, and is a non-specific measure of inflammation. To perform the test, anticoagulated blood was traditionally placed in an upright tube, known as a Westergren tube, and the rate at which the red blood cells fall was measured and reported in mm/h.

Again, according to the same page on Wikipedia, normal rated vary between 20-30 mm/hr.

In 1967 it was confirmed that ESR values tend to rise with age and to be generally higher in women.[5] Values are increased in states of anemia,[6] and in black populations.[7]

Age	20	55	90
Men—5% exceed	12	14	19
Women—5% exceed	18	21	23

According to my reading, I'm currently at a 75. That does seem very high. So, Dr. Rishi asked for an extended blood workup, and if I can get to bed early enough I'll go tomorrow morning. We then booked an appointment in 2 weeks to see what the results are. From there we can either do further tests or he can send me to a specialist of some kind.

I'm happy I'm getting some kind of answer, and that this might lead me to further discoveries that might help my health, but I'm also tired and discouraged at this new chapter of work, emotional labor and advocation that will come from new tests, new doctor's and just more time spent in the medical establishment.

My buddy JD said the anti-inflammation diet did wonders for her and her fibromyalgia. This is also a possibility for me, but it makes me nervous because of the cost, and the time and energy it takes to cook in such a precise, clean way. No wheat. No dairy. Whenever someone says the word "diet" to me I worry, I always feel I'm quite close to returning to ED territory.

I still think about it, and I still remember the high it gave me, I also know what it feels like to jump ship into the deep end, and remembering those sensations makes me uncomfortable.

AS usual, I'm getting ahead of myself. For now I'll start with a blood test. I'll try and go tomorrow morning. All I have to do is get up at the crack of ass.

Every body goes haywire.

Finally found the time to read Every body goes haywire by Anna Altman. A friend had shared it with me months ago.

Joanna Kempner, a sociologist at Rutgers and author of the recently published Not Tonight: Migraine and the Politics of Gender and Health, writes that “people worry when they cannot fulfill their end of the so-called sick role, an implicit social contract in which sick people are given leave of their everyday duties, as long as they adhere to certain rules like seeking appropriate medical care and working hard to get better. But these obligations are difficult to meet when there is no effective treatment.”

Ooooof. This has been a bit point for me the last two years. Getting it into my head, and accepting that I have a lifelong, chronic condition. There is no endpoint, other than the big endpoint.

THIS INHERITANCE AWAITS MANY WOMEN. Almost 20 percent of women suffer migraines, and 75 percent of migraine sufferers are women. That same group of hard-to-diagnose and hard-to-treat diseases—lupus, rheumatoid arthritis, and multiple sclerosis, but also chronic fatigue, chronic headache and fibromyalgia—primarily afflicts women. “Women are more likely than men to be disabled by chronic illnesses,” Susan Wendell writes, “and women (including women with other disabilities) suffer more ill health than men. Women live longer than men, but much of that extra living is done with a disabling chronic illness.”
...
Wendell points out that those chronic conditions bring with them the kind of invisible impairments that can cripple a patient without appearing notable. “Pain and/or fatigue are major sources of impairment in many chronic illnesses that are more common in women than in men,” she writes. It is exactly these impairments that are easiest to dismiss or misperceive as psychosomatic.
...
And doctors treat complaints about such conditions differently when they come from women. Kempner cites studies that show physicians prescribe less pain medicine to women than they do to men, even though women are more likely to suffer chronic pain. Other studies show that women are more likely than men to be prescribed antidepressants and tranquilizers—rather than pain medication—for their migraines. Add to this the fact that migraine is more likely to occur in people with mental health diagnoses like depression and anxiety, both of which are more common in women. All of this makes it hard to untangle migraine and other chronic pain conditions from stereotypes of female weakness and hysteria. The characterization perpetuates the notion of the migraineur-as-malingerer, the sensitive soul disabled by everyday disruptions.

I remember reading about hysteria in feminist health class and man did I not really get it at the time. It took an added decade of navigating the medical system for me to see it time and time again. I remember talking to my most normie friend N when she was on the verge of a burnout from her job. She was traveling internationally several times a year and was working over 60 hours a week. I told her, without mincing words that she should not wear makeup or dress up to go to the appointment (she usually would) because if she looks tired and beat, the doctor will be more likely to believe her. I also mentioned the study about how women often minimize their pain and discomfort out of the gendered habit of "I'm fine" -ing everything. I told her to psych herself up, and not play it off. This is a woman who is neurotically privileged and physically in peak condition.

This is hard to communicate when you appear to be young, healthy, and able-bodied. “To be recognized as disabled, we have to remind people frequently of our needs and limitations,” writes Wendell of women who suffer from chronic, invisible disabilities. The struggle for recognition is constant, even among the most compassionate: “Some people offer such acceptance readily, others greet every statement of limitation with skepticism, and most need to reminded from time to time.”

In my case, much of my close circle has these "invisible disabilities," chronic conditions that do not always display outwardly. There is something especially slippery about mental illness, something we're asked to describe at inopportune times, or when we aren't verbal or when we're feeling better, or when we're in such crisis we're catatonic.

I had my diagnosis immediately. Learning to cope with it takes years.
Illness is the space where I came to understand the limitations of my being. It’s a lesson we all learn but one I learned harshly and twice, first watching my mother and then enduring my own suffering. Now I know that I can lie down for hours without moving. I can meditate. I can stare at the wall and not despair. If I discovered something redemptive in this experience, it’s that capacity for stillness.

Heavy piece, but her closing paragraph really nailed it. There is a natural quiet that comes to you through solitude and suffering. I wish that didn't sound as poetic as it does. There's a resignation in it, an acceptance. But really, what choice do we have?

Fuck fat loss / You do not exist to be used.

Just read Fuck Fat Loss, and “You Do Not Exist To Be Used”: Dismantling Ideas of Productivity in Life Purpose by Gillian Giles.

Both have complimentary narratives on the body.

From Fuck Fat Loss:

For me, actually loving my body has come to mean honoring those things that I don’t totally understand, and practicing lots of non-attachment to outcomes related to its size and shape. I actually trust my body to do it’s job (which is to keep me alive, not to make me attractive to people who only have one idea about what that word even means). I believe it when it tells me it’s hungry. I believe it when it tells me it’s tired. I believe it when it wants to move, and when it wants to rest. Okay- I try to. It’s not always easy! No one taught me how to do that, In fact, I’ve been taught the exact opposite for my entire life.
...
I have decided that my job isn’t to discipline my body, my job is to care for it, to safeguard it, to be generous and gentle with it, and to thank it for taking me through my days. It is not my enemy. My love for it is not conditional on it fitting into a certain pair of pants, moving at a certain speed, accomplishing a particular task.

Self-love and self-care have been actively germinating over the last several months. They're a work in progress. Her post eventually references chronic illness as a caveat to "trusting your body" since it's a different reality. In my case, I can't entirely trust my body since I'm reliant on medication. My mind is fragile, and it's a constant. 

Having the ability to listen to your body is a skill as well. Especially if part of you has willingly forged a disconnect, a valley of small cuts. 

From You Do Not Exist To Be Used:

Unfortunately, shame, stigma and isolation are all too common experiences for those unable to keep up with the expectations of productivity. 

From a young age we are taught that our bodies and our purpose is to produce within effective normative means. That in order to be something of worth, you must prove productivity. The ideology of productivity in life purpose extends far beyond the school system. Expectations of productivity range from being able to get out of bed on a bad day, reproduce children, ride a bike or be successful in an academic task. In failing to be useful, we are told we are not of value or valued as less than. It is these bodies that fail to meet social standards of productivity that are most often marginalized.

Within the economic and social landscape, the bifurcation of the normative abled bodied citizen and disabled one creates an assumption that a proper citizen is an able productive one, that the economic and social value of personhood is conflated with restrictive notions of productivity. The result of this binary is that the disabled body is rendered as other, less useful then simply as just less. 

It is the inherent ableism of society, of capitalism’s productivity, that teaches us that we must be of use, that we are tools to be used to produce and that our entirety our purpose is hinged on a framework of productivity.

These are themes I've been struggling with over the last few years, especially this year, as I've been unhappy with my 9 to 5 day job. 

Working creatively has been hard. On bad days I feel useless, and I don't feel good enough to be making a living off my my creativity or whatever skills I have.  I don't always have the wherewithal to be pushed. 

I've also not had a "good" creative job with a competitive salary for the last decade. Right now I am still living pay-check to pay-check. I live in my mother's basement to pay cheaper rent. On bad days I feel barely employable and incapable of "taking care of myself" since I can't afford 800$ a month rent and the costs of living on ones own. 

When friends ask for services, I do everything for free. Yes, to help, but also because asking for payment is uncomfortable and I am not comfortable equating a financial sum to the quality of my workmanship. 

What I do these days is make small things for Etsy, letting that shop and culture dictate whether or not it i interested in my work. I am passive to the situation. 

Productivity is a difficult marker to step away from. Today I received new postcards I designed. I packaged them. I photographed them for Etsy. I posted them on Etsy and on my portfolio website. I shared a photograph over Instagram. I felt productive, and felt I could take an afternoon nap without guilt. I earned that nap, through doing something.

I would assess my my work-life balance as pretty good. Where I take issue is with the capitalization of my work, and the value of my productivity. It's difficult to think about and find my place in. 

I look at people I use to be friends with, who make a lot of money and are very productive and business minded, and I often feel shame around being lazy and not having lived up to any kind of potential I may have had when I was young and had energy. 

Though this may have been more of a sore spot in the past, these days I'm quick to dismiss it, since it's a question of priorities. We do the best we can. We prioritize daily (whether consciously or not) and we just get through the day. 

Being critical of the way our bodies are relegated to tools for productivity is important, since we do not have to succumb to that framework for our own self-worth, but it is difficult to escape altogether since we do live in a capitalist system, we do need to work to live, to pay the bills and to take care of ourselves. 

I have to take care of myself. And I'm not especially good at it. 

Gifs are better than words.

Stupid language.

























Conclusion: I miss Parks & Recreation.

My beautiful life on and off meds.

Ijeoma Oluo over at The Establishment has a great piece up called My Beautiful Life On And Off Meds.

If you've had any experience at all dealing with your mental health, you've most likely dealt with medication. Taking it or not taking it. Changing it. Upping or lowering a dosage. The questions you have about it. The judgement you feel for needing it. Weaning on or off. Forgetting a dosage or two and feeling like you're losing your mind. Side-effects. Existential self-questioning about the nature of your mind, your brain and your self. Medicare. The cost of your medication. Questioning the actual difference between the seemingly endless choices. Questioning the validity of clinical trials. Questioning long-term side effects. Questioning dependence. Wondering if you can stop. Knowing (in some cases) that you can't. There's a lot that goes through a mind, even a medicate one.

Oluo's piece talks about her experience weaning off of her meds:

I went off my depression and anxiety meds a few months ago. I had a feeling that with the medications, I was doing better, but I missed things that my medication had denied me. I missed wanting friends. I missed wanting sex. I missed feeling really happy or excited. I missed crying. I wanted to be able to feel sun on my face and feel it warm my soul instead of just my skin. I had spent a month or two romanticizing my unmedicated life before I decided to wean myself off the meds again.

I think if you spend a significant chunk of time on meds, romanticising your unmedicated life is nearly an absolute.

When the weather is nice, when nobody in my family is sick or in crisis, when I can pay my bills, when my physical health is good, I can manage my lifelong anxiety with exercise, meditation, and engaging hobbies. For me, “managing” means a few pretty bad days a month and a few pretty bad moments a day, but I’m out of bed and moving and able to get some joy from the world.

I think for those living with neurological privilege, there is a deep lack of understanding of how much  work "managing" is. It takes an enormous amount of energy, planning, and "spoons." It takes so much to just engage in your life. There's an extra step for the chronically ill that only the chronically ill even see. It's a new language to learn.

That may sound like a chaotic and frantic life, but it’s not. Chaotic and frantic was before, when I couldn’t understand why I acted the way I did, when I would let waves of depression pull me into months of self-loathing, when I was at the complete mercy of my brain’s chemicals with no idea when my brain would turn on me or for how long. Anxiety and depression can be chronic illnesses. And just like any chronic illness, they are improved greatly by regimen. For some, that regimen is running and yoga; for others, it’s therapy and meds. For me, sometimes it’s therapy, sometimes it’s meds, sometimes it’s long walks on the trail by my house. And like with many chronic illnesses, sometimes no interventions work, and those are some pretty dark times. But even then, I have the comfort of knowing why.

I have to say, though I'm sometimes very hard on myself about my "status" and where I'm at in life, especially regarding my "lost 20's," I am cognizant of my ability to use language to describe my life, my illnesses and my limitations. I have friends with whom I have a short-hand for certain kinds of pain and struggle. It took a long time and a lot of work for this to happen, but I do have it now.

Knowing why, and having the language to talk about yourself, and for yourself is hugely powerful. Understanding the nature of my illness, and being able to stand-up and actually set people straight about their bias or judgement is important to me. I am able to talk clearly about my condition (when I'm in a good place) and that helps. I am not lost to myself.

Oluo's piece is a good representation of some of the considerations we have when on or off medication. Check it out.

Our radical survival.

Available for purchase at this Etsy store. 

No more spoons, only knives left.

Gargantua has this great t-shirt available.

Really happy to promote work I can get behind, and that's also (somewhat) local! Check out their other t-shirts, I also like "THEY."

"After" mental illness.

Vice has this article up, What No One Tells You About Life After Mental Illness, it came out over a month ago but I just got to reading it.

First, I understand that for some, mental illness is temporary. You can be in a bad place, and you can move through it. This isn't my experience. I feel like it's been over a decade, and this is life-long. This is it, my lot. Things have been better as I've been trying to access services (with varying degrees of success) and trying to take care of myself. But, with that said, I still have a lot of anxiety and fear about my ability to take care of myself financially. I worry about job security. I worry about securing housing (which I've yet to do independently). 

The important thing to understand about recovery is that it should be treated from the perspective of the person. Many people say the most important thing for them is whether the help they got was focused on the things they wanted, such as sorting out housing and a career.

After something has such a devastating effect on you, regaining control and independence is the most important step in the recovery process.

I will not be recovered once I live on my own, I'll simply be managing. Or, living, just in a different set of circumstances.

My illness left gaps in my life where friends, experiences, and career progression should be, but I've learned to transition from a fear of leaving the house to being able to hold down a job and find a relative sense of stability. No one may have prepared me for illness, but we may as well do whatever we can to talk about what happens afterwards.

The author, Jessica Brown and I seem to have that "gap" experience in common. In some cases, there is the "afterwards," whether that's full recovery or just a batter state of being post-attack or post-episode.

I can understand why it's rarely discussed. As a survivor, or as the ill, it seems to useless and ridiculous to talk about "the future" and "afterwards." It seems beyond ridiculous. In the depths of it, you can barely wrap your head around surviving the hour, let alone having a vision board of what the future holds.

It's just a one-day-at-a-time mentality, moving away from that seems dangerous and unnatural for me.

After it. After all. There's also shame of the time lost. There's pain in there too. Lost time. Lost opportunity. It's a lot to carry around. And it's all so personal, so contextualized. Maybe it's because I'm still in it, still so close to it. It's a major factor in my life, there is no "after" for me. It's everyday.

And if ever it isn't now, it always could be soon.

Dear Bystander, The Unsolicited Advice Has Got To Stop.

The Establishment has a great piece up, Dear Bystander, The Unsolicited Advice Has Got To Stop.

The piece, by Katie Klabusich hits the nail on the head regarding unsolicited advice, patronizing tones and unhelpful commentary.

Interesting statistical precision:

Statistically—because 18.5% of us are dealing with a mental health issue at any given time according to the National Institute of Mental Health—you may have even had an extended period where you struggled with a life-disrupting condition. Only 4.2% (approximately 10 million) of us over the age of 18, however, have a long-term illness. Time, Newsweek, et al can run headlines about the one-in-five Americans with a mental illness all they want; those statistics include temporary as well as chronic conditions.

In short: your experience with meds and/or therapy and/or a temporary debilitating condition should aid you in cultivating empathy, but should not teach you the lesson that you totes know how fix all the neuroatypical, disabled, and chronically ill folks around you.

 I could basically quote the whole thing. Check out Katie's article.

Photographs by Iris Slootheer.

Iris Slootheer has a photo set about living with chronic illness that has some great shots in it.  Her photos have a lot of spoon theory visuals. Her Illness photo-set represents her struggle with various illnesses.

Check out the project on Flikr, she's also for hire, but she seems based in the Netherlands (good news if you're in the Netherlands).

Constant exhaustion.

This is pretty much how I feel these days.

Like this, but less cute. I feel totally useless and like I'm disabled but that disability is unrecognised.

Via. I can't actually link to the source since the name of it is blocked by my work server.

When the pharmacy is mocking you.

Source.

Psychache.

So I was reading a report on the use of electro-convulsive therapy in Quebec from 2002. In it there was a good overview of major depressive disorder:

Major depression is a chronic illness. Approximately 80% of patients will have at least one other episode of depression in their lifetime. On average, the episodes last approximately 20 weeks, and most patients recover temporarily. The economic and social impact of major depression is considerable. 

Worldwide, depression ranks fourth in the world’s disease burden, immediately after respiratory infections, diarrhoeal diseases and perinatal conditions. The social and economic burden it entails is greater than that of ischemic heart disease, cardiovascular disease and tuberculosis. 

There is also an immense psychological burden. According to a systematic literature review, depression appears to substantially increase the risk of cardiovascular-disease mortality, but the quality of the studies available does not establish either the actual level of increase or the causal mechanisms. Psychological suffering, also called psychache (or psychic pain), is so great that suicide often appears to be the best means of escaping it.

I'd never heard the term psychache before. The term is used to describe psychological, psychic pain. Something I suffer from and usually refer to as psychological pain. 

There's no doubt that all the reading and research I'm doing is helping in my able to write, and talk about my illness, but I don't know how helpful it is in experiencing the pain. The suffering is here regardless of the intellectualizing I use to frame it. 

What good is psychache to me? Can I call in it to work with it? Is it recognized by the medical community? By employers? By our greater culture?