#I’m just disabled it’s not like I can’t work full time or reliably cook or clean for myself oh wait

[thementalistscandidate]

Ngl, getting reminded that I’m a financial burden every two fucking seconds is getting real old

[cardboardangel]

My Disability Experience

CW: Medical trouble, pain, gaslighting

(When I refer to a 'you' I am talking to a roommate)

Most people would start by saying 'in a typical day', but I can't because there is NO typical day. No day is the same for me, as much as I wish it was. Like today. I woke up, my right shoulder feeling like there was a rusty screw somewhere in the joint, and my left hip feeling like someone was shoving a nail into it every time I moved. And my uterus feeling like something inside is stabbing outward every so often. Yesterday, for most of the day, i felt like I had a balloon full of oobleck behind my face, my ears were killing me. But I wanted to make soup for all of us, cuz I know soup is super comforting and can help a lot with recovering. Plus minestrone has beans, veggies, spinach and such, so good nutrients to aid recovery. I threw away my trash, and put away the remaining veg and that was all I had energy for after cooking. Hell, if I didn't use the instant pot I couldn't have even done that much... the main reason I WANTED an instant pot was because it's something that can cook without me having to stand over it, and takes much less time than the crock pot... When I cleaned the yard? That pain in my shoulder was in both shoulders, and in both my hips and knees. I was completely wrecked at the end of each day it took for me to do it all. The end of each day meant a sunlight hangover--my sinuses swelling, my joints throbbing, my head and neck aching like whiplash. On the last day of it, even my goddamn FINGERNAILS hurt and my asthma was beginning to act up because of the exertion and inflammation it all put me in. And yet I could not stop, because after months of trying to get all of the household involved in it, I knew I had to lead the charge.

Some days I am lucky and I'm in very little pain. Those are the days that I start doing things, even though I know if I'm not careful I'll trigger the pain.

But often on those days, it might not be the pain, but the lack of energy. And when I say lack of energy, I mean it feels like I am moving against a current in a river, fighting the weight of my own limbs just to get shit done. On real bad energy days, I am trying to wade through that thick kind of mud that is often on the sides of some rivers, so much so that even getting out of my chair to get something to eat is a monumental task. When I don't tell you how I'm feeling, there are several reasons behind it. First and foremost, I have been conditioned my entire life to minimize my pain, don't complain, it's unbecoming to bitch about things all the time...

The next biggest reason is because for most of my life, I've been told that I was imagining the pain. That I was just lazy, or just a baby about the usual aches and pains of life. My own mother didn't take my pain seriously until I was 18, and learning how to drive. After an hour of driving, I was unable to close my hands. To the point that I couldn't open our front door for myself because my hands hurt so badly. Then she finally said 'yaknow, that ain't right' and we began my quest through dozens of doctors telling me that it had to be imaginary or I was exaggerating, or perhaps wanting attention.

The third reason I often don't broadcast what pain I'm in... because I don't WANT to make you guys feel bad. I don't WANT to give excuses, I don't want to make you guys have to do more because of me, when I SHOULD be able to do things.

Getting my Sjogren's diagnosis was a day I actually cried in relief, because there was a name for why I was in pain for so much of my life. Why I was always so tired. Why being outside always seemed to drain me and make me sick. Yes, Sjogren's could kill me if it ever comes out of remission and begins to attack my internal organs and not just my joints. But it's real, and it has a name. It's something I can take a blood test for and it tells a doctor why I'm complaining about this stuff. But... overall?

It's bittersweet. I might know that I have a real diagnosis, but I can't help but start to remember all the years I was told it was fake. That it is an excuse. Year after year after year of that shit wears down on your mind. You start to doubt your own experience, your own ability to judge reality.

Something I also have run into is, even with an official diagnosis, people tend to get frustrated because I can't reliably do things. I can't guarantee I can do a thing one day to the next, because I can have three good days in a row--and then suddenly I can hardly get out of bed. And people tend to get annoyed when a condition doesn't go away. When you can't get better.

More than once, I've told someone I'm feeling icky, and they've replied with 'don't you always feel icky? push through it!'. Some days I can. Like the days I cleaned the kitchen or laundry room. Other days, my neuroses--anxiety, feelings of inadequacy, feelings of obligation, feelings of compulsion--overpower my pain. Those days are the worst because I start out knowing that I'm going to be in absolute agony as a result of whatever task I've started--and yet my brain won't let me stop. Even though it knows that what I'm doing is probably going to make me sick for days as a result.

As for being autistic... that compulsion is part of it. The neuropsychologist who diagnosed me was stuck for days trying to decide if I had OCD or if I was Autistic. She decided that I was Autistic with strong obsessive compulsive features. And those obsessive compulsive features have pushed me to do things that I know I shouldn't, because GOTTA DO THIS is all that drowns out the static and pushes me forward. So when you say things like 'I don't wanna hear excuses', it is a trigger for me. It brings all the voices of those doctors, teachers, authority figures telling me that I was making it all up. I hear my own voice telling me that my pain doesn't matter, that everyone's in pain and I should just suck it up. That is why I started crying, why I got so upset. I wanted to be a nurse, or maybe even a doctor. I went into medical training right out of high school. Slowly but surely, each career I tried to train for was eliminated because I couldn't physically do it. I know I am a highly intelligent person, that my knowledge could be valuable to someone. I wanted to help people--others like myself in particular. But my health kept deteriorating more and more. In college, I had to have a handicap placard so I could park closer, get to my classes on time because the books were SO heavy.

Then I trained for a desk job. And I couldn't even do THAT because of my autism. Because I was so unpleasant to be around, and no one wanted to work with me. No one wanted to have to deal with me, train me properly or be in the same room as me after my first day. I went in to work the second day and they told me to leave. That they didn't want me anymore. The thing you mentioned, about my face not changing? It's called masking, and it's often something I do as a coping mechanism, or defense mechanism. It's not something I do intentionally, and it's not something I really control.

If I was JUST autistic, and not physically disabled, maybe I could deal. But... yeah. That is what I feel, and what I experience.

[appalachiananarchist]

I think barriers to healthy eating can be hard to understand. The reason I am posting this is because I recently had someone who grew up in an area with good store access and reliable public transportation more or less mock my patient population for dietary choices and its health effects. The exact phraseology was something like “There’s a Walmart just up the road and there’s vegetables there, so there’s no excuse for all the diabetes.” Yes. There is a Walmart super-center that sells vegetables. It is the only one in 50 miles in every direction and services dozens and dozens of towns. 

But 50 miles is a commitment in both time and gas money. Do you even own a car? There is no real public transportation in rural areas, so you can’t make the trip if you don’t own a car. (Let me tell you, this is where the issue starts and stops with most--they don’t have car). So let’s assume you own a car or have access to one. If you live and work in Town B, with is 50 miles from the store, how often can you make the trip for groceries while working full time and raising a family? How often can you afford the gas for the trip? Perhaps once a month?  I can tell you from experience, the answer is once a month for most, twice if they’re really lucky. If you can only go once a month, what do you buy? What can you afford? Sure you can go for veggies, but you have to get food to last you a whole month on your limited budget. Fruits and veggies go bad quick and you can’t freeze an entire month’s worth of vegetables, so you’ll probably want to buy some “junk” food that won’t go bad as easily. If you do have or are at-risk for conditions that require special diets, like heart disease or diabetes, do you have access to a healthcare provider who can teach you about what foods to buy/avoid? If you get the food, when will you prepare it? Do you have time after work to cook, or are you working multiple jobs or unconventional hours? Do you have the physical ability to cook, or are you ill or disabled in such a way that you can’t?

There are so many barriers to eating healthy that you would never think about if you hadn’t seen or experienced them. I’m not saying that to make excuses for anyone, or to say that it is okay to eat poorly. It isn’t okay at all that people have to live without access to healthy meals. But I am saying to both healthcare providers and anyone else who thinks telling someone to “eat healthier” is sufficient that it isn’t. Sure, sometimes people just make bad choices. That’s people for you. But sometimes, people are making the best choices they know to make with the options they have. It should be our job, especially if we are working in areas defined as food deserts, to know or create resources to help.

For example, we have a company that provides transportation to low-income people, grocery delivery, and wood delivery for those still primarily relying on wood stoves for cooking (and house heating). We have regular farmer’s markets all around the surrounding counties to provide more options for fresh foods. We have organizations that cook and serve healthy meals regularly for those who can’t do so themselves. We have free clinics to provide nutrition education for medical conditions (or just general health). None of these are perfect, but they are somewhere to start, and much more helpful than telling someone to “eat better” without trying to solve and correct the underlying reason why they are not already doing so.

I’ll end by posting a quite old, but still quite good, map from this article that shows food access, car access, and comparisons to areas with high rates of diabetes and obesity. The similarities in these maps are not coincidental.

This stuff is old news. Very old news. So why are so many people, and so many healthcare providers in particular, still not acknowledging it?

[thecoroutfitters]

Written by John D on The Prepper Journal.

Editor’s Note: This post is another entry in the Prepper Writing Contest from John D. If you have information for Preppers that you would like to share and possibly win a $300 Amazon Gift Card to purchase your own prepping supplies, enter today.

In a SHTF situation where you can’t stay in your own home, and moving in with a friend or relative is not an option, what will you do? If bugging out to the wilderness suddenly becomes your only option, will you survive? Probably not for very long, if you believe the experts. Nevertheless, if your survival plan doesn’t include a bug out to the forest option, it should, but coming up with a good plan might be more difficult that you think.

//

For starters, do you have a reliable bug out vehicle? If your bug out plan has you escaping the city or suburbs in a modern vehicle, you may be in for an unpleasant surprise. Most modern vehicles won’t survive a strong EMP event. You may find yourself traveling on foot, away from a major metropolitan area, in search of food and water. But at least you won’t be alone. When food and water run out, millions of others will be traveling, mostly on foot, away from large centers of population. Even if you have a working vehicle, it may be useless, due to the gridlock created by people and disabled vehicles, all on the same escape routes. You may avoid some of that if you get away quickly, but will you? How much time will pass before you’re packed, and ready to go? Will the roads already be jammed by the time you depart? As time passes, the situation will get worse. Can you imagine what starving, desperate, people are capable of doing? I’m thinking “zombie apocalypse”.

My Bug-out Plan

Understanding the predicament, I don’t have to look any farther than my garage for a solution. My bug out plan doesn’t depend on a full-size vehicle, but I won’t be bugging out on foot either. I suspect that I wouldn’t last very long, with just the items I can carry on my back. Instead, I’ve decided to use my garden tractor (riding lawn mower), pulling a small trailer. Don’t laugh, it’s more practical than it may seem.

It would probably survive an EMP event.

It can travel off-road, avoiding traffic jams and bypassing bottlenecks.

It can pull a small trailer, loaded with essential supplies.

I can avoid people who may want to harm me, or take what I have.

I’ll have a 360 degree view, helpful for situational awareness, and if I have to use a firearm.

I’ll be able to travel to places inaccessible by car, which in theory will make me more secure.

My getaway will be at a whopping 6 miles per hour, maximum, but it beats walking.

It’s not how fast you bug out, it’s how well you bug out fast

There are drawbacks, of course. I’ll have no shelter from the elements, as I would in a car or truck. My traveling companion will have to ride in the trailer, or walk along side. Perhaps the biggest drawback is that I won’t be able to outrun anyone. For that reason, it’s important to pack and leave quickly, before things get out of hand.

The bug out location I’ve selected is far from the densely populated area where I now live, and is an area that provides opportunities for hunting, fishing, growing crops, and is near a fresh water source. I know what some of you are thinking… A city boy, living in the wilderness, wouldn’t last long. You might be right, but what choice do I have? Since I don’t own a wilderness cabin, or even a camper, how can I best prepare for a situation that forces me to abandon my home? For starters, I’ve compiled a virtual library of information that will be helpful in such a situation. I’ve also purchased some basic survival equipment and supplies. I practice the skills I’ve learned, and I’m a pretty good gardener.

While living in the wild will be a challenge, I first have to arrive there safely. Traveling with a fully loaded trailer screams “Hey look at me! I have food, water, and survival gear!” How do I get to my destination without being robbed or killed? I see two main problems:

Starving, thirsty, desperate people won’t hesitate to attack me and take what I have.

Those already settled in, near my bug out location, won’t appreciate the competition for limited resources.

To make matters worse, the noise of the tractor will announce my presence. In either case, one bullet could ruin my day.

Bugging out is risky, but I’m thinking of a scenario where I have no choice. I’ll improve my odds somewhat by getting away quickly, before anarchy is commonplace. To do that, all of my things need to be organized, and ready to toss into the trailer. This includes items that are protected from EMP’s. The list that I’ve already prepared helps to make sure that I don’t forget anything.

As I travel, I expect to cross paths with others who are also bugging out. The majority of the people I encounter will be just like me, trying to survive. Many of them will be traveling on-foot, with very limited supplies. My survival odds will improve if I join a like-minded group of travelers, or convince others to travel with me. I’ll bring extra food to share. Travelling with a well-fed and motivated group should help to keep the criminal element away. I’m not trying to be a group leader, or a macho tough-guy, but just one of the many people fleeing an area that has become unsafe. Being armed, and avoiding likely trouble spots, will also help.

With luck, I’ll make it to my bug out spot, probably with a number of other people who’ll soon become my neighbors. As I settle in, I’ll begin to implement a plan that might be described as “Living in the Wilderness, but Not Wilderness Living”. After food and water, my top priority will be the construction of a substantial shelter. As Pat Henry put it “your tent offers zero protection from a sharp stick, much less bullets.” I’ll use modern tools and technology to deal with challenges that come with living in the wild. I’ll have lights when and where I need them, and I’ll use sensors to alert me to intruders, and garden pests. Some of the pests that would otherwise be a threat to my garden, will become food, if I can kill or capture them. My garden tractor-trailer combination will continue to be an asset, as long as gasoline is available. I’ll be able to haul whatever useful items I can find, including building materials, firewood, and water. It’s likely that some of my traveling companions will become the nucleus of a survival group, and the benefits of belonging to a group are many. One could be hunting or fishing, while another guards the supplies and equipment. One could be on the lookout for intruders, while another prepares food, or tends to a garden. One could sleep, while another stands guard. Portable two-way radio equipment, as well as low-tech devices, such as whistles, may be used to alert group members to emerging threats.

Plano 1919 Sportsman’s Trunk

My trailer is approximately 48” by 30”. If stacked 30” high, I’ll have about 25 square feet of cargo space. My supplies will be covered with a tarp, protected from rain and wind. My supplies will be similar to those mentioned in a recent TPJ article by Pat Henry. Pat suggests using 3 plastic containers. One is for food, another for shelter, and the third for cooking, cleaning, hygiene, health, and miscellaneous supplies. Those containers account for about 15 square feet, and mine will be similar, leaving me with at least 10 additional square feet. Because I’m thinking long-term survival, I’ll pack clothes and bedding for all weather conditions. I’ll use the additional space for items that will help me survive in the long-run. Included will be the components of a small solar electric system that can be easily reassembled at my destination. I’ll have lights, and a variety of electrical devices that can be powered by the solar electric system. Sensitive electrical items are pre-packed, wrapped in aluminum foil and insulated from each other, which is the equivalent of a Faraday Cage. The ability to use power tools will make construction of a shelter much easier.

Because of the trailer’s small size, I look for ways to conserve precious space. I won’t bring bulky items, like table lamps. Instead, I’ve assembled small and simple light fixtures. I won’t bring a pedestal fan, or even a tabletop fan. Instead, I’ll use small muffin fans, similar to those you find in computers. I’ll mount them on frames, made from pvc tubing, that can be disassembled, saving space when packing. I’ll make good use of paracord, rope, and plastic sheeting. I need not carry books, and volumes of survival literature, because all of those things have been scanned, and stored on a KindleFire. Likewise, carrying a large quantity of water is not practical. I don’t have space for large containers. Instead, I’ll pack several collapsible water containers. I won’t bring a propane stove, or even a charcoal grill, but I will bring a grill top. I’ll assemble a fire pit with stones that I’ll find at my bug out location, and finish it off with the grill top. I’ll pack my cast iron Dutch oven, overlooking my concern for weight, just this one time. Once settled in, my tractor-trailer’s ability to haul things contributes to my bartering opportunities.

The bug out location I’ve selected will be a 7 to 8 hour trip by garden tractor. I have to make sure I have enough gasoline, but my preliminary estimates indicate that I can make it with just the capacity of a full tank, and a full 2 ½ gallon container. I’ll also carry a tube for siphoning, in the event I’ll need to do that. I’ll be carrying a shovel and an axe, helpful if I get stuck or need to clear a path, and very useful when I’ve settled in at my bug out location.

I’ll have the ability to collect and store rainwater. I’ll be prepared to filter water, and boil it, making it safe for drinking. My bug out supplies will include heirloom and hybrid seeds for food crops. Traveling light is an important consideration, and for that reason I’ve created a separate list of items to acquire, once I’m settled in at my bug out location. For the most part, those additional items will make life more comfortable, but are not essential for survival.

Once I’ve settled in at my bug out destination, my first priority will be a sustainable source of food. I’ll start a garden of course, but I’ll need to have other food while I’m waiting for my crops to mature. My bug out supplies include a live trap for small animals, but it is safe to assume that others will quickly decimate local population of rabbits, squirrels, and other edible creatures. My bug out location is near a large lake, and I suspect that I’ll be able to catch fish.

I’ve used Pat Henry’s food list as a starting point, but modified it to reflect my own tastes and preferences. In an effort to avoid bland meals, I’ll pack items such as olive oil, spices, sauces, flour, and corn meal. My list for shelter is similar to Pat’s, but I’ve added an air mattress for additional comfort. I’ll have construction tools, and plan to make tent-living a very temporary arrangement. My list for cooking, cleaning, and hygiene is different from Pat’s list, because I put more emphasis on long-term survival. While I will pack items such as soap and dish detergent, I’ll place a high priority on reusable items, such as wash cloths and towels. Instead of a propane stove, I’ll pack a rocket-stove, and reusable cooking supplies. I’ll have a solar-heated camp shower, wash basins, and collapsible containers for water. I’ll have a good first-aid kit, a variety of medicine, alcohol, bug spray, toilet paper, and other items for health and hygiene. One container, perhaps a backpack, will be for items that need to be easily and quickly accessible. Items in this container will include a flashlight, weapons, maps, a compass, binoculars, cash, a lighter, a KindleFire, snacks, a pocket knife, basic tools, and a rain parka.

My “electronics” box will include all of the components for a small solar electric system, except the solar panels and batteries. It will include test equipment, extension cords, power strips, lights and light fixtures, fans, portable alarms, an AM/FM radio, and a GPS device.

Items that will be packed separately include tools, solar panels (mounted on a hinged aluminum framework), batteries (for the solar electric system), weapons and ammo, live trap, gasoline container, tackle box with fishing supplies, shovel, ax, rake, grill top, and a jump starter (includes tire pump and light). I’ll have the tools and supplies needed to make repairs to the tractor and trailer tires.

After I’ve set up camp I’ll be on the lookout for anything that might be useful, such as a propane stove with a full propane tank, table and chairs, buckets, tools, food and water. If I can find them, I’ll increase my stockpile of disposable items, such as paper towels, zip-lock bags, trash bags, aluminum foil, toilet paper, soap, dish detergent, laundry detergent, insect repellent, toothpaste, shaving cream, alcohol, and other items for health and hygiene. I’ll also stock up on firewood and tinder.

Perhaps the most important item I hope to acquire after I’ve settled in, is an energy-efficient chest freezer. In the event that I have success hunting, fishing, trapping, or growing crops, the freezer will provide an easy way to preserve food. Not needing to find and process food everyday will give me opportunities to rest, and attend to other aspects of survival. The smallest of the chest freezers on the market today are very energy-efficient, meaning that they can be powered by a small off-grid solar electric system. According to the energy-guide tag, 600 watt-hours per day is required for a 5 cubic foot chest freezer. I can get that much power with just 2- 100 watt solar panels, and 2 – 100ah batteries. My system will be a little larger than that, to accommodate the other things needing power, and for extended periods of cloud cover.

Cold Weather Considerations:

Where I live, the months of December through February can include some very cold and nasty weather. Extreme weather may force me to deal with the danger, and postpone bugging out. I may instead choose to make my home as secure as possible, and prepare to defend it. Those traveling through my neighborhood would also be susceptible to extreme weather, perhaps giving me a bit of an advantage. If I’ve already bugged out, and set up camp in advance of cold weather, preparing to survive cold conditions will be a high priority. This includes the construction of a substantial shelter, and a way to provide heat.

The Long Run:

In the event that federal and state government no longer exist, law and order will be maintained at a local level, by an assembly of the people of that area. A protective force can be created, and guard duties shared. Efficiency can be realized in areas such as food production and cooking. Those with special skills will be highly revered, and will serve the entire community. Bartering will be commonplace.

I don’t expect my wilderness life to last more than a couple of years. In a serious SHTF situation, many people will die off from lack of food, or simply from the inability to survive without the conveniences we take for granted today. If that happens, there will be plenty of empty homes to move into. I would choose one with a fenced back yard, to help protect my food source. Most of my food will come from my garden, and perhaps some fish, chicken and rabbit.

Summary:

If I can’t safely stay in my own home, which is at the edge of a big city, or move in with someone else, far from a densely populated area, moving to the forest may be my only option. I need to be ready to bug out quickly and travel safely. I’ll need to bring the appropriate equipment and supplies. And finally, I need to be able to survive wilderness living. I’ll have to depend upon my hunting, trapping, fishing, and gardening skills. My prepping includes the equipment and knowledge to do those things. I don’t expect it to be easy. The competition for limited resources will be fierce, and not everyone will be honest and ethical. Still, I plan for a comfort level far exceeding that of tent camping. I applaud those who can live in the forest with only a knife and the clothes on their back, but I can’t do that.

Perhaps the best things I have are a list, and a plan. I don’t depend upon a modern vehicle, since impassable roads, or an EMP event, could stop me dead in my tracks. My pack-out list helps to ensure that I’ll bring the essentials, while not being overloaded with items I can do without. My extensive database of information will be useful in the event of a medical emergency, or other unexpected circumstances. Moving quickly, with a destination in mind, might prevent me from becoming a victim of the lawlessness that would likely follow a SHTF situation. Getting to my destination quickly means that I’ll also be able to “scavenge” more quickly than some, and acquire useful stuff before it’s all gone. Banding together with trust-worthy, like-minded others may offer the best odds for survival.

John D

The post Will You Survive If You Have to Bug out to the Forest? appeared first on The Prepper Journal.

from The Prepper Journal Don't forget to visit the store and pick up some gear at The COR Outfitters. How prepared are you for emergencies? #SurvivalFirestarter #SurvivalBugOutBackpack #PrepperSurvivalPack #SHTFGear #SHTFBag

[asryakino]

I want to work. 

I like working. I have a decent job working with kids that’s fullfilling mentally and is worlds better than the soul crushing retail and food service (and the dreaded retail/service job of handing out demos) jobs I had before. 

I like my job. I like my work. I even like my coworkers and that I get to make kiddos happy by being ‘the cool adult’ who knows things like video games and social media. 

Which is why I’m so fucking gutted that I’m goddamn terrified to drive my truck in its current condition because I have NO brakes. At all. None. I can hear the grinding, stopping is almost non existent and the tires were already pretty shite to begin with but it’s a reliable truck otherwise. 

But I haven’t been able to afford maintenance. Because I can’t even afford basic bills. I’m constantly behind, trying to scrape enough by to cover gas and food. I’m trying to care for mom, and dad. Which is harder when one of them lives out in the middle of bumfucked NOWHERE literally a place that is nothing but farms and barren hills 

I drive out there on weekends so he doesn’t have to live on his own, I take care of her when I’m not at work. I drive her to doctor appointments, out shopping, all over town. I take her anywhere she wants if it gets her out of the house. 

I have a full time job in trying to take care of mom. A weekend job of trying to keep my dad sane and from ending up BACK in the hospital. But just... 

my job isn’t in one place. I get sent AAAAAALL over the city to go where I’m needed. And it’s not a tiny town. It’s a fairly big city (fifth largest in the state and quickly beginning to dwarf out the fourth)

I need my job. It’s how I keep MY sanity. I’m only allowed to get out of the house to work. Because if I go out for self-fullfillment and social reasons I get guilted for a week. Because I have friends and a social life sometimes. When the stars align and the planets power up and the moon is blue and black all at once. I get to have a social night out. 

But only if I remember to bring mom a thithe for having a night out that didn’t include her. Because otherwise it’s a week of using silence as a weapon and refusing to tell me -anything- and then getting MORE angry because I don’t read minds and can’t tell what she wants, when she wants it and how she wants it all done. 

But... fuck it. This is a rant. I was going to apologize but it’s under a readmore already. 

I just spent an hour and a half bawling my fucking eyes out because I need money. I don’t WANT money, I literally NEED it. Because if I don’t get the fucking truck fixed. I can’t go to work. If I can’t go to work, I can’t earn money to continue doing things like - eat... and go to work. I Two things on the top of my list that I would like to do. Continue eating and continue going to work. 

Work is a sanity replenishing place. Even when it’s frustrating. I need to be able to go to work. Because it means I’m not a fucking failure to the small handful of people who matter. It means I’m not everything most of my family already believes I am and going to work means they can’t just write me off as being a lazy, entitled, shitlord. 

Like the exact lazy, sleeps-until-noon, selfish, entitled, uninformed,filthy, ignorant fucknugget my mother presents me as to literally everyone else in the family.   “Well she’s a horrible maid.” - said about the house being a mess, she’s a fucking hoarder and was buying 400$ worth of shit every fucking month for a YEAR until I quit working at the store she was constantly buying from. And she goes into panic attacks and anxiety attacks if I try to clean anything, move it or throw it away. “SHE has seven cats.” - About the cats we’ve rescued BECAUSE SHE INSISTED WE TAKE THEM IN AND NOT ADOPT THEM OUT BECAUSE “No one will love them right.” The very same cats that I said ‘let’s just get this one TNR’ed and set up a shelter, he doesn’t need to come inside we have too many cats.’ and she insisted that it was too cold for them, they needed to come in. I end up with the blame for the house being ruined by cats she insisted we take on. “She locks me in my room at night.” - Said in ‘jest’ whenever anyone asks what she does. She tells this to random strangers. She tells this exact words to absolute strangers. In reality she refuses to leave her room 90% of the time. She outright wastes my whole damn day on a regular basis by saying she wants to go out, refusing to get ready to go out, then languishes in her room and claims that everyone hates her, she doesn’t want to go out because the world hates disabled people and that she’s worthless and unnecessary and I don’t need her to go do (whatever) because I only need her money. All in a tone that implies that I don’t care about her or anything that I’m only after her money.  She’s racist, rude, disabled, and narcissistic. There is a massive list of words I’m not allowed to say in her presence but I’m not allowed to know them until after I’ve made the mistake of saying them and utterly ruining her day. (One of which is ‘hoarder’ because mentioning the term around her immediately shuts her down. I am also not allowed to mention her weight, age, or looks. But I am subject to being called ‘porker’ ‘fatback’ ‘full moon’ and other phrases connected to my weight and what I look like in my preferred clothes.) I’m not allowed to be in her prescence while displaying ANY emotion except pure joy and happiness. No matter WHAT she says, does, or how my life is going. Because to do so means that I am personally attacking her, and that I hate her, wish her ill, and want her dead. So no matter what she says about ANYTHING (and she has plenty to say about everything) I am to smile, nod, and agree. And she will read off graphic, disgusting articles from dubious police reports about rape, murder, physical violence and animal abuse. And expects me at all times to never interrupt her, to simply listen, and wants me to be angry at absolutely no one with her because SHE has made herself angry and “Has a good strong angry going” and doesn’t want me to “ruin it”. All this despite my begging, pleading, and eventually yelling at her that I didn’t want to hear about shit like that. That I am fully and wholly aware of how much SHIT is in the world and how the world is utter garbage, but that I am trying very, VERY hard to remain positive, to create the change I want to see in it and to be happy, DESPITE all the bullshit.  This break only came after she had been snappy with me for daring to visit my best friend after work, TELLING her, well in advance I was going to. And when I got back home she IMMEDIATELY decided to read to me an article about SOME nameless college girl who’s roommate (also nameless) microwaved her kitten because she was angry at her. There was no solution, no justice at the end of the piece. She was reading it, in graphic detail with plenty of imagry just because it made HER angry and she wanted ME to be angry, but not to show it. I finally snapped and screamed at her for an hour about how I didn’t want to hear anything like that, that I was trying to claw my way out of depression and shit...

She has since gone back to reading that kind of fucked up bullshit to me no matter what and it has, predictably, not helped me at all. 

ON TOP OF ALL THAT FUCKED UP SHIT

I am the only child. My parents are fucked up. And I have the social expectations to take care of them.  She’s going through early onset dementia/althemiers. Not that anyone in the medical field believes me because she’s cognitive enough on tests to lie about how she feels and is doing. And they don’t live with her 24/7 to observe the shit I see on a daily basis. She has cancer, it’s making things worse. She has diabetes, and THAT isn’t helping. And it’s all through the VA, and between that, HER depression (which counts because it’s her’s and I obviously have NOTHING to be depressed about) she can’t talk on phones for appointments. She’s mostly deaf because of the tinnitus. 

I am her companion, appointment scheduler, valet, cook, support system, personal assistant, and overall caregiver. 

I don’t get paid for it.

And on top of ALL that... On top of everything else I have to handle.  I just want to go to work.

But the brakes are out on the truck. And I didn’t get paid.

Not one fucking cent becuase I work on a school schedule. We had fall break, and I got sick the week following and couln’t speak, so I couldn’t work. And THIS paycheque period was for THAT EXACT TIME so.. no cheque. At all.

No money.

I have a quarter tank of gas in a truck that has NO brakes, the oil needs changing, the battery doesn’t actually start the car every time I turn the key, and the tires are so bald they are nearly slicks for racing. I am currently TERRIFIED to drive. At all. Because if I don’t skid off the road due to the brakes suddenly giving out, I may get to my destination and the truck just.... NOT START because the battery has decided to be a fucking dick about it being one degree colder than it feels like providing power in. 

Every time I get in the truck I run the risk of not leaving for work, or not coming home. And when I’m on the road I run the risk of ‘if the car ahead of me slams on his brakes, will I actually be able to physically stop. Can I pull hard to the side if I can’t?’. 

I pray for some company vehicle to hit me, to crush the vehicle so I can get the repairs done that I need to be able to just drive... because I can’t afford them. I don’t get paid enough to survive and pay what small amount of bills I have. I can’t get a loan... my student debt has utterly and completely ensured that the most money I will EVER qualify for is 200 bucks. 

I need brakes. And I know for a fucking fact that they won’t replace my brakes without tie-rods, calipers, and bearings. Because they NEVER replace my brakes without refusing to do so unless I get tie-rods, calipers, and bearings. Because fuck me, that’s why. Becuase I’m a GIRL I don’t know about cars. 

And if they write off that my car’s not safe because I didn’t get the tie-rods, calipers, and bearings replaced. I CAN GET ARRESTED FOR DRIVING AN UNSAFE AND NON ROADWORTHY VEHICLE

Brakes are 87 a piece, but tie=rods, calipers, and bearings? Well that’s 500 at LEAST.... and that’s just the tie-rods and bearings, calipers and brakes will be another 700... 

I don’t know where to go. I don’t know what to do.

I just want to work. I want to be able to make a positive change in the world and work... and prove to the people around me that I’m not what they think I am... 

I want to be able to stop crying when I get home...

I want to feel safe on the road and be secure that if I hit the brakes, the car will stop. 

And it seems like it’s all too much to ask.

[marketerarena-blog]

Five Wild Days Aboard a New England Squid Boat

Corey Harris wasn’t concerned about the storm. The captain of Rhonda Denise, a 77-foot commercial trawler, he’d been stuck in port all week, as two nor’easters, in early March, slammed the New England coast back-to-back. Now a third brewed offshore. But Harris saw an opportunity. “We’ll thread the needle between the storms,” he told me over the phone. We’d catch as much squid as possible, then haul ass back to port before the next system hit. Bring seasickness medicine, he added. “It’ll be rough—but worth it.”

The Ultimate New England-Style Clambake

On the Thursday of our departure, the Port of Galilee, in Point Judith, Rhode Island, was full of boats but empty of people. If you’ve eaten calamari at a seafood shack or a little red-sauce joint, odds are it crossed the dock here in Point Judith. In 2016, the village’s 119 vessels landed 22.6 million pounds of squid, valued at $28.6 million—its best haul to date. It’s the 15th-highest-earning seaport in the country and first in squid on the Atlantic seaboard. By all measures, it’s the calamari capital of the East Coast. And with ongoing downturns in cod, flounder, and haddock, scores of commercial fishermen, not only here but also up and down the New England shore, now depend on squid to stay afloat in a notoriously unpredictable industry.

  Harris met me in the parking lot. Among the local fishermen, he’s one of “the few young guys worth a shit,” a longtime captain told me. He’s also something of an anomaly. The salutatorian of his high school, in Babylon, New York, he dropped out of his university’s predental program, in 2007, to work on trawlers, drawn to fishing for reasons that he can’t quite explain. Soft-spoken and ambitious, with a tight red beard, he started as a deckhand on Rhonda Denise, made captain by age 22, and became a co-owner a few years later. Now, at 31, he’s still 20 years younger than the majority of guys on the dock. “The storms have kept most boats in,” he told me. “There’s no fish on the market. Prices will be high.” There was no need to worry about the weather, he added—as long as we made it back by Monday.

Rhonda Denise cruises close to shore. Michael R. Shea

  WIND AND FLECKS of snow ripped through the rigging as Rhonda Denise headed south, rolling through 12-foot seas. In summer, female Atlantic longfin squid lay eggs by the millions in the warm waters off Rhode Island. But in winter, they amass on the edge of the continental shelf, more than a hundred miles offshore. So that was where we were going.

By sundown, the four of us aboard were alone, with nothing but ocean for miles around. These long hauls are worth it for Harris. Ninety percent of the seafood that Americans consume is imported. But Atlantic longfin squid are so superior in taste, texture, and resilience when cooked that demand outstrips supply, giving local captains an uncommon edge in the industry. The price of squid seldom dips, staying at $1.50 a pound or better, and that’s no small change when you haul in 10,000 pounds a drag.

The Absolute Beginner's Guide to Fly-Fishing

Morning came quickly, Harris flipped on the bunkroom light at 5. Once dressed and topside, the crew—brothers Ryan Smith, 24, and Dave Smith, 26, both bearded and stocky—began stacking plastic totes on the deck, unfazed by the 10-foot seas that had me stumbling. Ryan is the shorter and quieter of the two. He started working with Harris in 2017, when a DUI charge left him needing a job that didn’t require driving. He’d hardly missed a trip since and was on track to make $80,000 by the end of 2018. Dave, a recovering alcoholic, was a more recent hire, after he’d bounced from ship to ship for several years. Still, he expected to make $70,000 in 2018, a good living for a 26-year-old, much less one 16 months sober. “This is the best boat I’ve ever been on,” he told me. “I’m not going to screw it up.” Working with Ryan is certainly an appeal; on his chest Dave has a tattoo of the two of them as teenagers. “He’s my brother,” he explained. “I love him.”

More than 100 miles offshore, brothers Dave Smith (left) and Ryan Smith clean monkfish on Rhonda Denise. Michael R. Shea

  The pair soon took its place behind a giant winch and let a spool of net and cable as large as a tractor tire play out into the sea. Once submerged, the net would open to 15 feet tall, 135 feet wide, and 120 feet long; drag along the ocean floor; and—the crew hoped—find squid, fluke, and other keepers. The technique is called bottom trawling, and Harris is fortunate to have the permits to do it. For decades, environmental groups have criticized the practice, claiming that it bulldozes the ocean floor. Though the long-term sustainability of the method remains up for debate, the government has dialed back quotas for finfish, like flounder and haddock. The price of federal permits has also skyrocketed, which has prevented many young guys from breaking into the business; lucky for Harris, Rhonda Denise already had permits when he became a co-owner.

An hour and a half later, 5,000 pounds of fish, a pile the size of a Camry, dropped into a squared-off pen midship. Dave rolled his eyes and groaned; Ryan said nothing. It was a mixed bag that fishermen call swill—butterfish, fluke, dogfish, lingcod, sea robin, weakfish. Squid, to the crew’s disappointment, weren’t here in large number. Turning this pile into dollars would take work.

A longfin squid. Michael R. Shea

  Harris and Dave climbed onto the mound and started tossing dogfish and sea robins overboard. Nearby, at a waist-high conveyor belt, Ryan sorted the keepers—squid, whiting, monkfish—into large red laundry baskets.

They worked quickly; fish zipped by. Harris pushed the pile onto the conveyor with a broom, then I took a turn. We filled 54 baskets, 60 pounds apiece, then switched to totes until the remainder disappeared. Below deck, Dave shoveled some of the boat’s 20 tons of ice into cardboard boxes to store the catch.

The storm was rolling south from Nova Scotia. Any breakdown, delay, or trouble, and we’d be in seas as tall as the ship was long.

By the time we finished packing the first haul, the net was full again and ready to be brought up. This kind of mixed-bag fishing can wreck a crew, Harris told me. “It takes an hour and a half to sort a pile like that, and our net fills up every 50 minutes.” A lot of boats don’t bother with this type of fishing, he explained, since they end up throwing back more than they catch and the prices for the keepers can swing widely. “That’s why guys like squid,” he said. “It’s big, clean bags, and the price is set.”

It was well past midnight before we broke for dinner. Everyone was exhausted, but Harris remained upbeat. On his phone he played a video of his 4-year-old son, Brody, who has cerebral palsy, trying to rock climb at a gym. His grandparents had wanted to take him, Harris explained. But he hadn’t liked the harness. “We can get a different one, but they’re expensive,” Harris added. “Everything for special-needs kids is so damn expensive.” The cost of raising a son with disabilities is, in no small part, why he pushes himself as hard as he does. In fishing, pay is directly tied to effort, and effort is measured in pounds.

With squid in short supply, Dave Smith watches as a 12,000-pound bag of scrip—worth as much as $20,000—hits the deck. Michael R. Shea

  The Top Spots For Fishing in America

BY SUNUP MONDAY, after two days of mixed- bag fishing, the forecast had changed. The nor’easter wouldn’t make landfall until Tues- day, buying us more time. But not much. The sea was flat—the quiet before the storm.

Dave and Ryan killed time on the deck while Harris positioned the boat for another drag. Dave leaped into the air and attempted a jump kick. “See that?” he said to Ryan, as he threw karate chops to the left and right of his head. “Too fast. Too fast. What, what?—sucka.”

Comedy is necessary to endure the grind of these trips. The crew stays in rubber boots and bibs for 10, 12, even 16 hours at a time, as they push and sort fish, haul nets, toss bycatch, box keepers, and make counts. They sleep in two- hour shifts, once or twice every 24 hours, until they’re needed again.

“One more drag, then we’re scupping,” Harris said. “Everyone loves scupping. It means we’re going home.”

“I freaking hate scupping,” Dave said once Harris was out of earshot. “It’s a shit-ton of work, and they might be 25 cents a pound.”

For decades, scup, or porgy, were as reliable and profitable as squid are today. Then after a few bad years, the government limited catch quotas, leading to a boom in farm-raised tilapia. The scup came back, and the harvest limits remain high today. But the commercial market has never fully recovered. Should the same fate befall squid, captains like Harris would surely go under—a looming concern, compounded by worries about bottom-trawling bans, like one passed in April on the West Coast.

The crew chows down after a hard day at sea. Michael R. Shea

  We made three tows, each bigger than the last—6,000 pounds, 8,000 pounds, 12,000 pounds. Scup the size of dinner plates filled the net. “If these things are two bucks,” Harris said, “this is a $20,000 bag.” Or it might just as easily be worth $3,000. Either way, we raced to get through the pile, all hands pushing or sorting fish. The storm was rolling south from Nova Scotia. Any breakdown, delay, or trouble, and we’d be in seas as tall as the ship was long. Harris set the pace—hustling about, throwing dogfish, hosing baskets, moving totes—as the crew tried to keep up.

By 2 a.m., the last basket was dumped below deck, and we sat around the galley for a customary final night’s steak dinner. The guys were excited, for a hard job well done, a potential payday, home. But, mostly, they were just beat. The ship motored through the night. When we reached the Point Judith at 7 the next morning, the dock hummed with activity. The nor’easter had been upgraded to a major winter storm; we’d beat it in by six hours.

Dockside, Harris worked a small crane, while Ryan and Dave attached cartons of fish to a conveyor that ran 90 yards from the ship to the heart of Seafreeze, one of the largest commercial processors on the coast. All told, we’d caught 625 boxes of fish, or 41,520 pounds. That meant, in five days, and only three of fishing, the crew had netted $80,000 in seafood. After expenses and the boat’s cut, the brothers each made $9,000, and Harris pulled in $13,000. “We killed it,” he said, standing in Seafreeze, attaching little tags to the cartons, bound for the Fulton Fish Market, in the Bronx, New York.

I asked what was next.

“Home,” he said. “Sleep.”

This story appeared in the September 2018 print issue, with the headline, “Here’s the Catch.”

https://askfitness.today/five-wild-days-aboard-a-new-england-squid-boat/

[gaiatheorist]

Communication.

Welcome to the UK in November 2017. On December 6th, I’ll take a £5 return bus-trip to the city centre, for an ‘open day’ for vacancies within the NHS, specifically for people with disabilities. I’d say I’m being over-analytical in assuming that the event is to back-fill the low-end vacancies that will be left as overseas workers return to their countries of origin in the midst of this EU-uncertainty, but that’s what it is. I’ll ‘lose’ a chunk of a day I should spend seeking suitable employment, explaining the things I can’t-do-now. I can do a lot of things, just not for a whole day any more, and the NHS pay-rates are awful, for the menial work that will be on offer. Yes, somebody needs to change the sheets, and push the tea-trolley, but I have brain injuries that make fluorescent lights unbearable, and only one of my hands works properly. I can’t even apply for the higher-paid audio typing roles, because my accuracy wouldn’t pass the speed-test, I have to correct so many red-underlines these days that my previously-phenomenal typing speed is now only average.

The irony, that I’ll have to explain my deficits to the NHS, who are the one agency that already hold that information, and just choose not to share it. Of course the staff at the recruitment day won’t have access to my medical records, my work-coach patiently explained ‘neurological condition’ to the person on the other end of the phone several times, and had to spell my name out three times. She was red in the face, and very angry when she had to repeat “No, absolutely not domestic or porterage service!” Box-ticking and back-filling. I’ll comb my hair, and smile politely, and explain what I can do, to ‘pass’ the sanctions-bar, there’s a possibility that I’ll be sanctioned anyway, for being ‘unsuitable’ for the roles that will be on offer. I bet the system is fast enough to take the ‘sanction’ from my December payment. Merry Christmas, DWP, I’m already trying to decide whether I can afford the £3 Morrisons ‘wonky’ veg box in my next grocery delivery, or whether I should take it out, and just buy the potatoes, carrots, and onions. 

That’ll be a new communication, phoning various companies to say I’ve had to cancel my direct debits because I won’t have enough money to cover them, the  contents insurance is extortionate at £26 per month, but there’s a chance my water cylinder might fall through the ceiling due to years of leaking. Oh, and the side-line that, as more people in the village are rolled onto Universal Credit, there will be an increase in burglaries. 

This all started with the lack of communication after the brain haemorrhage that ‘luckily’ didn’t kill me. Pretty much everything I know about the surgery, and the side-effects came from the internet, the hospital told me nothing. Absolutely nothing. Oh, wait, I’m exaggerating, the OT who assessed me on the ward, 10 days after traumatic-invasive brain surgery told me “Most people can go back to work within about 8-12 weeks.”, that was it, no questions about what I did for a living, no information on the crippling fatigue, or the host of physical and neurological side-effects of major brain surgery. She gave me a booklet, ‘Memory Strategies for Patients and Carers.’, that was it. 

I went back to work, initially mornings-only, after six weeks, because I couldn’t stand to think of other, less competent colleagues screwing up my caseload. I also went back quickly to get away from the ex and his parents, with their suffocating way of caring. I didn’t want to be ‘cared for’ by the in-laws dropping in unannounced several times a week, and tutting because I’d been in the house all day, and not picked up the ever-increasing pile of socks the ex insisted on leaving at the side of the sofa. I went back to full-time hours as much to spite the ex as because I was working from home in the afternoons anyway. He would have been far happier with me staying part-time, and being dependent on him, spending all afternoon cooking a dinner that he’d look at, and say “I’m sorry, love, I can’t eat that, is there anything else?” There wasn’t any communication from the hospital, there’s a line in one report from the Consultant Neuro-surgeon. “Having tolerated mornings, she has returned to work full-time as a teacher.” I said I worked in a school, not that I was a teacher. 

I wasn’t coping. I was trying to ‘get better’, and it was exhausting me, trying to prove that I could do everything I did before. Being me, I thought that was my fault, that I was weak, and just not trying hard enough, the rehab clinic discharged me after two appointments, because I’d already gone back to work, and wasn’t amenable to the smiley-nurse’s suggestions that I colour code timetables of household chores for different family members. My fault there, because I knew that the ex would ‘in a minute’ any task I set him, and not-do it, and that the kid would take so long, and ask so many questions, that I’d be as well doing any task I’d set him myself. Should there have been a flag-of-concern, back to the hospital, or out to Occupational Health? Probably. Was there? No, because all of these various departments work in isolation.  

My fault. I mis-managed myself horrendously in that initial denial/anger phase, superficially ‘accepting’ that a lot of things were now much more difficult, but doing them anyway, to stop other people seeing me as vulnerable, or less-than. I’m very much less-than, I’m a shade of what I was, but I didn’t want to acknowledge the enfeeblement, so I tried to work around, or through it. My resilience and tenacity did me no favours, I projected-coping, and that’s what people saw. I burned myself out, trying not to ‘let’ other people do things ‘for’ me. 

My first assessment under the PIP disability benefit programme suggested that I ‘could’ complete all of the arbitrary descriptor-activities, some with ‘aids or assistance’. I contested, and then the communication went completely out of the window, because I had my second round of brain surgery, so didn’t appeal the Mandatory Reconsideration  decision that I was fully fit for work. The additional paperwork that I’ve seen now, from the decision-maker’s report details some of the nature of my job. Should there have been a flag-of-concern within DWP, about the potential risks of continuing in that line of work, full-time, with brain injuries? Absolutely. Was there? Guess. 

Communication-wise, the next mistake was mine. I’d kicked out the ex, so I could concentrate on supporting the kid through his A-levels, without having to expend emotional energy on a petulant man-baby. There had been some changes at work, and I threw myself back into proving-myself again, I was, at the age of 39, going to turn my life around. Didn’t quite go according to plan, and, when I returned to work after the second surgery, some people genuinely did ask me if the procedure had been cancelled, because I was full-time straight away. I knuckled down, and got on with things, not wanting to complain about the pain from the noise, or the lights, because nobody likes a moaner. I did ask my manager if there were any less-noisy offices available, he said not, so I stopped asking.   

(There’s a side-thread I’m not including, but, again, known-information was not shared between various parties, on multiple occasions.) 

The hospital didn’t even bother re-calling me after my 6-month post surgery brain scan, the ‘outcome’ is 3 lines of text on my GP’s computer screen. ‘Good occlusion, recall September 2018.’ My optician ‘wrote a letter’ for me to present to my GP, to ask for an urgent referral to neuro-ophthalmology. The GP shook his head, and said he’d send the ‘letter’ to general ophthalmology, then took all three copies of the triplicate-carbon form. (One of the ‘poor quality original’ stamps on the latest batch of PIP-paperwork is because I’d taken a photograph of the form on my phone, and printed it out at home, this PIP-process is costing me a fortune in printing information that already exists, because PIP is utterly divorced from the NHS,) I tried to send the photographed form to my neuro-consultant via email. The woman in Patient Liaison replied that she didn’t have access to his email address, and I blew up in anger at her, because that’s bullshit, even if I do have brain damage. (It’ll be firstname,lastname@hospitalabbreviationcode.nhs.uk I have brain injuries, I’m not a moron.) I emailed the form to his secretary, and found myself with an appointment at the city hospital, to have the same test the optician had already done, and the same test my GP was referring me to the town hospital for. (Nothing abnormal detected, because that’s not the test the optician had asked for, there’s some obscure funding reason why he can’t raise the referral himself, and it has to go through neuro, and I appear to be speaking Chinese, all the while, my eyes are becoming steadily less reliable.) 

Communication. ‘Workplace Well-being’, formerly ‘Occupational Health’, despite being part of the NHS, and despite me giving my informed, written consent for any-direction data-sharing, didn’t have access to my NHS patient files. (WHY?) I ended up photocopying the whole bundle at home again. WW requested a formal functional assessment of my cognitive abilities in October 2016. I still haven’t had it. I’ve had to chase it multiple times myself, and recently found out that my GP saying he’d make the re-referral I was asking for on 13/10/17 was delayed. He didn’t send it until 10/11/17, and then it was m chasing the surgery to fax a copy to neuro-psych, because the NHS computer systems are so outdated that they won’t send identifiable personal information via email.   

The bit of DWP that deals with PIP doesn’t communicate with the NHS, or the bit of DWP that deals with Universal Credit. (The bit of DWP that deals with PIP does, however, send letters to the tribunal panel, copied to the applicant, stating that the tribunal should not consider the case. Sneaky semantics there, DWP, some people will see that as “Don’t even bother.”, I’m not ‘some people.’) That’s going to be the next communication issue, articulating to an independent panel that some detached computer-monkey somewhere within DWP copy-pasting “You said you had difficulties with... I have decided that you can...” is in no way reflective of the difficulties I do have on a daily basis, and that the potential for the UC systems to compel me into unsuitable any/all employment places myself, or others at risk of harm, due to my disability. I have 25 pages of that ready to go, the ‘issue’, the ‘impact’ of that issue, and the ‘adaptations’ I have to make to work around it. Very clear, very coherent, and evidence-based, rather than the opinion-based statements DWP have pulled out of the atrocious nurse-report from my last ‘assessment.’

The PIP system is awful, it’s not in the least bit fit-for-purpose, the ‘assessment’ is heavily skewed towards physical activities, and there’s no pain-scoring involved. If I did say “That hurts.” every time an action caused me discomfort, I’d lose my voice, and, over a period of years of having other people either panic-flap, or roll their eyes when I did disclose discomfort, I just stopped mentioning it. (While the shrieky one blethered on for months about her lump, and being scared to go for her blood-test results without her Mum.) I can raise both arms above my head, it hurts my right shoulder. I can ‘stand on either leg’, but I feel incredibly unsteady doing so. I can read some of the letters on a chart a defector nurse is holding 2m away, with my glasses on, but it was physically uncomfortable to focus, because she’d decided to stand in the window, and the light was behind her. The way she recorded the results was appalling, it wouldn’t have been very hard for the ‘decision maker’ to cherry-pick the ‘can’ conclusions, and ignore the pile of medical evidence. 

Now, I’m waiting for a date for the tribunal, to communicate that the data held on me across various agencies and departments is not being shared appropriately, that I desperately need to work, because sitting at home being unproductive is a waste of me, but that I can’t commit to working full-time, due to my disability. I need the ‘buffer’ of the PIP payments because in-some-ways-brilliant as I am, I’ve been out of work for so long, I’m only likely to be considered for low-end, entry-level positions. The WW doctor’s report states that I ‘should be able to return to work, after counselling, and with a phased and supported re-integration.’ I’ve been having counselling for six months now, the general focus of the sessions is how unwell the PIP-process is making me. 

What the PIP and UC systems are doing to me is making me consider throwing myself into any sort of job that would pay my bills. Without the functional assessment, that’s exceptionally risky, because I’d effectively be declaring myself ‘fully fit’, and I know that I’m not. The ‘failure to disclose pre-existing’ isn’t the way I work, it’s dishonest, and ultimately presents a risk of harm. I can’t/won’t do that. Despite all of my careful juggling, very soon, my outgoings will be higher than my income, and I’ll be on the Helter-Skelter of bank charges for bounced payments. I’m spending more time ruminating on the PIP tribunal than I am on seeking employment, and I’m spending even more time wondering what else I can cut back on, so I can still feed the kid when he’s back with me for his Christmas break. 

Shouting into the void, I know, this is me practicing my case for PIP, and hoping that the way I communicate the massive holes in what should be a safety net comes across clearly. There’s the potential that the way I cross-reference and communicate will only make the panel see my hyper-functional side, and dismiss the case anyway, when I’m on-form, I AM phenomenal, I just can’t do that all of the time any more.