Tonight is another fight with my monster - depression is again clawing at my heart and my rationality. It takes everything I have to fight it. Depression takes every bit of common sense, of reason, of logic, of hope and optimism and stamps it out as if none of it had ever existed, and it pulls me down into a deep, dark pit of pain, despair and hopelessness. Sometimes it overwhelms me to the point of total apathy and I'm, for a time, thankfully numb to the pain. I say thankfully because, truly, those moments of apathy are a welcome reprieve from the clawing I feel inside my chest like a true, physical pain.
Sometimes I cry, other times tears escape of their own will through no intent of my own while I lie staring at the ceiling or into the dark of my room, and other times my body is wracked with silent sobs that are so intensely violent my back suffers jolts of sharp, stabbing pain like some great beast is trying to wrench its way out of me through those sobs. Why silent? I don't know. I've never really been able to bring myself to make a sound when I cry during heavily depressive phases. I think, if I'm totally honest, it's partly shame. I'm ashamed of the mental pity party I have that elicit the tears. The thoughts I have both at the time and in hindsight seem so stupid and petty and petulant to me when so many are suffering worse that I don't want anyone to overhear my tears and ask me what's wrong, because then I might have to speak them aloud and I don't want them to hear how stupid my brain is being. So I suffer my depression as I suffer my chronic pain - in silence.
I know this is dangerous to do, should I ever start to lose my fight, but I assure you were it ever to reach that point I would speak out. I promise. And perhaps even now I should. But I really do feel utterly stupid for how my brain thinks when I'm like this. I know my mom would never judge me, but she has enough on her plate.
The truth is, a lot of it is just... genuine loneliness. Aside from my immediate family, I have no friends offline. Everyone I know is all over the place, globally. The nearest in Ontario. I can't drive, so it's not like I can go out and find places to go to meet people and do fun things. And I don't live in a major city so Uber is out of the question, not to mention I can't afford it anyway, really.
My entire future is one gigantic question mark, and most days, I just...can't deal with that. I sit here and wonder, almost every night, about what kind of future I'll have. Will I ever get married to a decent man(unlike my emotionally abusive and manipulative ex husband), and if so when and how the hell am I supposed to meet him in the first place? Will I have kids, and if so, how many? I'm turning 31 in December and the ol' oven has a shelf life before the proverbial D20 roll stars getting riskier. Not to mention if I do have kids, what are the odds that they'll have chronic illnesses that I have? Do I even want to have biological kids in that case, even though it's something I've always wanted? Or a that just being selfish as fuck when I'm putting their health at risk and so many kids are out there needing a good home?
Thoughts like those are just a few of many that race through my mind when the monster's on my back. And I can't make it stop. I don't know how. I just have to grin and bear it until it finally lets go and I can breathe again.
I don't know what to do.
About anything.
And that is the most terrifying and haunting thought of them all.
Monday, July 24, 2017
Thursday, July 20, 2017
My Chronic Life
I've touched on a lot of topics on this blog, some personal and others just my views on things. I've given glimpses here and there about how my illnesses affect me, but I've never really gotten in depth about it, shy of the times I've had an emotional breakdown.
Those of you that follow my Twitter know I'm gathering information to do a comprehensive post on Ehlers-Danlos Syndrome, and as I'm wanting to make it as informative as possible, it's taking quite a while to do so. In the meantime, I wanted to do another Spoonie post, and thus, I decided to confront the one post I've been afraid to write. The one about my own chronic life.
Why have I been afraid to write it? For several reasons, really. Some silly, some not so. Mainly that I have a constant worry that normies will think my descriptions hyperbole. Given how much genuine ableism is on Twitter, this isn't an unfounded worry. Another worry that I put into the 'not silly' category is other disabled individuals will read it that have more severe symptoms and think myself a whiner, or less severe symptoms and think they are the whiners. I don't write this to be a comparison between myself and other Spoonies out there, but rather just to share my story and my experiences.
A 'silly' category worry is that I'll be writing and think myself a whiner. Which I think we all do at one point in time or another. We think of how many people have it worse and feel we have no right to complain about our lot. But the truth is, we do. Just because someone out there has it worse doesn't mean we don't have it bad, ourselves. Should we be grateful that we don't have it worse than we do? Of course. But that doesn't mean we aren't allowed to feel grief, or sadness, or anger for the hand we've been dealt.
I digress.
My diagnosed illnesses are as follows, and in no particular order: Fibromyalgia, ME/CFS, Hypermobile Type Ehlers-Danlos Syndrome, Hashimoto's Thyroiditis, Osteoarthritis, Degenerative Disc Disease, Chiari Malformation Type I, Irritable Bowel Syndrome, Scoliosis, Chronic Migraine, Chronic Acute Insomnia, Chronic Sinusitis, Tenosynovitis, Synovitis, Chronic Muscle Spasm, Depression, Anxiety (Social and General), Sebhorric Dermatitis, Arrhythmia, Bursitis of the hips
Suspected illnesses/other: Sjogren's Syndrome, Dysautonomia, history of elevated ANA (hence why I'm on a constant watch for Lupus), undiagnosed issue with knees that causes constant pain and moderate-to-severe swelling, severe loss of lordosis in the neck (my cervical spine is ramrod straight, in layman's terms)
All in all, it's safe to say I have too many acronyms applied to me, lol. I first became chronically ill at the age of 10 after a whiplash injury. Unsurprising as spinal cord trauma often triggers the onset of Fibromyalgia. A following bout of Epstine-Barr Virus when I was 13 only added insult to injury and life rapidly went downhill from there. More than once in my life, I looked like a heroin junkie from the track marks on my arms as doctor after doctor after doctor ran numerous tests trying to find out what was wrong with me. I didn't officially receive my Fibromyalgia diagnosis until I was 18. Eight years after the onset of trademark FMS symptoms. I didn't find out about the Chiari until a few years ago, after neurological symptoms in my hands and arms warranted a cervical MRI. Come to find out after I requested my medical records, the low-lying cerebellar tonsils were noted on a MRI when I was 16. The doctor I was seeing then never told me.
Throughout my life, I'd heard the same phrase over and over again. 'You're too young.' Whether it was to be in so much pain, or to have so many symptoms, or to be given any sort of pain relief. I was too young. I think many doctors thought I was making it up, until at the age of 14 one doctor discovered my 1:640 ANA. I was sent to an internist who, though it had only been a couple of months, ordered a second one. It was 1:1280 by then. Lupus and other autoimmune panels came back negative. No one had a clue what was wrong.
By the time I finally found the doctor I'm now seeing, the doctor I had been seeing before him completely ignored the fact I'd jumped from 95 lbs at 5'7 (a combination of an overactive thyroid and anorexia) to 185 lbs in only a few months. My current doctor (who I adore and have followed from partnership to partnership loyally and would do to the ends of the earth) ran a thyroid panel. An uptake and scan came next, followed by an ultrasound. I had Hashimoto's Thyroiditis. My free T3 and T4 were insanely low, indicating, obviously, hypothyroidism. He got me started on synthroid and not only did I discover my weight shedding and my insane mood swings vanishing, my energy was coming back.
He's also the one that discovered the Chiari, the Sjogren's, and pretty much everything else aside from the HMEDS, which was diagnosed by a rheumatologist that I'm also currently seeing. (I have to admit, it was pretty fun when she was evaluating me for it when I made her cringe by touching my right thumb to the inside of my right forearm! LOL!)
I've tried to work off and on throughout my life. My longest stint of employment was 3 months. Between my chronic migraines and the widespread pain in my body, I call off too often for anyone to keep me employed. If I had a schedule to know when my body would hit a flare and have me bedridden with pain, or when a migraine would knock me on my ass for anywhere from three to ten days in which I'm in bed with a sleep mask on and earplugs in because the faintest light or tiniest sound is excruciating and has me vomiting into the nearest receptacle, that would be a different story I think. But the Spoonie body comes with no such convenient alert system.
On good days, I'm Supergirl. I can zoom around the house, sweeping floors, vacuuming rugs, doing laundry, dusting surfaces, you name it. I'm a one woman cleaning army. But those days are random. Usually instead of good days, I have tolerable days, where I can move around with a moderate level of pain and take care of my own needs, maybe go grocery shopping with my mother, or go to the doctor if I have an appointment that day.
Bad days are spent abed, typically with ice or heat on my knees, neck and head while I watch a show or putz around on Twitter. Those days, I can't even take care of my own needs, aside from making it the few feet to the bathroom and back. Eating is out the window; even if I could manage to fix myself food, I have no appetite to eat, and the nausea from the level of pain I'm in would ensure that it would immediately come right back up. On bad days, I've even had to cancel doctor appointments. I'm literally too sick to go to the doctor. Thankfully, my doctors understand.
I've seen ableists comment that 'well I know people with disabilities that work, you're just lazy.' They fail to understand that not everyone that is disabled has the same disability and the same restrictions. They don't understand that I have to be careful with how hard I cough, or that sneezing is a gamble, or even rolling over has to be done with care. Why? Because every one of those things risks dislocating a rib, or my shoulder blade. It sounds like hyperbole, but it's completely true. I've subluxed (partially dislocated) ribs rolling over before. In bed. I've fully dislocated ribs during coughing fits with bronchitis.
Having hypermobile EDS means that the most normal, every-day activities risks joint dislocation for me. I can be walking and suddenly my ankle will roll of its own accord. The only thing I can do during those moments is pray that my ankle, knee or hip doesn't dislocate on the way down. Hypermobile EDS means that I'm 'double-jointed.' For some, the extent of the hypermobility is limited to certain joints. But my hypermobility is wide-spread; it extends to every joint in my body. Hypermobility is caused by the tendons and ligaments being too loose to properly support the joints to keep them from bending further than they should, or to keep them from dislocating. Which makes hyperextension very easy, and dislocation hilariously simple to achieve on accident.
It also means I'm doomed to the inevitability of arthritis in every hypermobile joint, in the long run. I already have it in my neck, in my shoulders and in my hips, as well as in my knees to a small degree, though they're not certain as to the full extent of what's going on with my knees. They're an enigma to them as much as myself.
Fibromyalgia is another one that's misrepresented by TV ads and what have you. You'll see ads for Lyrica or something and it's like 'take one pill and life is great again!' Yeah, no, that's not how it works. Let me clear something up straight away here; fibromyalgia is different for every patient. Every single one. It's a syndrome, which means it's a conglomeration of symptoms and the range of severity of these symptoms is variable from patient to patient, and not every patient will have every symptom or even the same symptoms. My experience with fibromyalgia is one of widespread aches and pains, and a constant feeling of having a sunburn all over my body. Sometimes that feeling of being sunburned intensifies into being wrapped in electrified barbed wire. Fibro-fog is a term many people have likely heard; it's a common symptom of fibro, where we deal with a period of mental fog. It can make us forgetful and/or disoriented, and we tend to do some pretty silly things during these times.
My most memorable was as follows - I went to get a bowl of cold cereal. We keep our cold cereals in a cabinet at the end of the kitchen, and our sugar bowl on a near by rolling cart that our microwave is on. I fetched both of these things as well as the milk from the fridge as it was nearby. I took care of making my bowl of cereal, and put the sugar in the fridge, and was trying to fit the milk into the microwave and was getting extremely frustrated with it not fitting before I realized what I was doing and laughed at myself. I put the cereal away and returned the milk to the fridge. I only found out that the sugar was in the fridge several hours later when my brother asked why the sugar bowl was in the refrigerator.
Times like these, we can only laugh at ourselves. There's really no other choice, if you don't, you'll likely wind up crying at how ridiculously frustrating it is trying to get your brain to cooperate and perform the most simple of tasks.
All in all, daily pain of varying intensity is my life. There isn't a single second of any day, even good ones, in which I am completely pain free. Pain medications (even narcotics, like the Norco that I am now on) don't eliminate the pain, they just take the edge off, but believe me, that is a wonderful improvement. I use various assistance devices to get through the day, especially if I have to be out and about, whether it's braces on various joints, one or both arm-cuff crutches, or, my nemesis, the motor chairs in stores. (I hate those things...and the judgmental looks people give me when I have to use them.)
I understand that living in constant pain is a hard concept for able-bodied people to understand. Pain is fleeting for you. It's temporary. It goes away when an injury heals, or after a few moments when you stub your toe, or when you take Tylenol for your headache. But for most of us, it never, ever goes away completely. Every second of every day, we are in pain somewhere. It never stops. It never goes away. It interferes with our lives in every aspect.
And it leaves us exhausted.
Chronic Fatigue Syndrome is a big one that many of us have, and that truly adds insult to injury. You hear the term Chronic Fatigue Syndrome and you think 'oh, you're just tired.' No. Chronic Fatigue Syndrome, or, as it's now known, myalgic encephalomyelitis, is more than being tired. It's being constantly exhausted and that exhaustion never goes away no matter how much we sleep or rest. It often comes with aches and pains of its own, as well. I have both insomnia and CFS, and it is absolute hell. It's bad enough sleeping and waking up just as exhausted as when I went to sleep. It's worse feeling more and more exhausted because I can't sleep for as long as 72 hours before I finally manage to crash out.
It's been found that people with chronic illness, especially those with chronic fatigue, are functioning in a perpetual state of exhaustion that would be comparable to a normal person not sleeping for three days and then attempting to function normally. This sounds hyperbolic, but, again, it isn't.
Some of us - myself included - get so exhausted or in so much pain that we can't even shower or bathe daily. And if we express this while talking amongst ourselves because we know that we'll find a sympathetic ear in one who can understand, oft times someone else will horn into the conversation with how 'disgusting' it is.
While I feel happy for those of you that can shower daily, or eat daily, or do anything else normal on a daily basis, we can't. Not always. So instead of calling us out on how "lazy" and "disgusting" we are, try imagining living in a body that is constantly at war with and attacking itself. That is constantly exhausted and in agony. And that we do what we can, often seeing to the most important things first, because we know we have to pick and choose what gets done every day. Sometimes, a poor man's bath (washing up with a cloth in the stank zones) is the best we can do because we just don't have the spoons to do more, having used them on more important ventures. Sometimes, we can't even do that. Your judgment is not necessary nor desired. It's just rude and completely lacking in compassion.
The fact is, I am constantly exhausted, I'm constantly in pain, and my body is literally attacking itself with its own immune system. There isn't thing one I can do about any of it. I wish I could. I wish I had a different body. But I don't. I don't know why I have the body I do, with the problems it has. But I do. I make the best out of it, but sometimes, my best is just getting out of bed to go to the bathroom and coming back to take a nap because walking a grand total of 30 feet was so fucking exhausting that I need one. And you know what? I'm getting okay with that.
I've had doctors judge me, I've had strangers judge me, I've had family judge me. I'm not going to be judgmental of myself in a negative manner. Not when I'm in as much pain as I am already. If the best I can do isn't good enough for anyone else? Screw them.
Those of you that follow my Twitter know I'm gathering information to do a comprehensive post on Ehlers-Danlos Syndrome, and as I'm wanting to make it as informative as possible, it's taking quite a while to do so. In the meantime, I wanted to do another Spoonie post, and thus, I decided to confront the one post I've been afraid to write. The one about my own chronic life.
Why have I been afraid to write it? For several reasons, really. Some silly, some not so. Mainly that I have a constant worry that normies will think my descriptions hyperbole. Given how much genuine ableism is on Twitter, this isn't an unfounded worry. Another worry that I put into the 'not silly' category is other disabled individuals will read it that have more severe symptoms and think myself a whiner, or less severe symptoms and think they are the whiners. I don't write this to be a comparison between myself and other Spoonies out there, but rather just to share my story and my experiences.
A 'silly' category worry is that I'll be writing and think myself a whiner. Which I think we all do at one point in time or another. We think of how many people have it worse and feel we have no right to complain about our lot. But the truth is, we do. Just because someone out there has it worse doesn't mean we don't have it bad, ourselves. Should we be grateful that we don't have it worse than we do? Of course. But that doesn't mean we aren't allowed to feel grief, or sadness, or anger for the hand we've been dealt.
I digress.
My diagnosed illnesses are as follows, and in no particular order: Fibromyalgia, ME/CFS, Hypermobile Type Ehlers-Danlos Syndrome, Hashimoto's Thyroiditis, Osteoarthritis, Degenerative Disc Disease, Chiari Malformation Type I, Irritable Bowel Syndrome, Scoliosis, Chronic Migraine, Chronic Acute Insomnia, Chronic Sinusitis, Tenosynovitis, Synovitis, Chronic Muscle Spasm, Depression, Anxiety (Social and General), Sebhorric Dermatitis, Arrhythmia, Bursitis of the hips
Suspected illnesses/other: Sjogren's Syndrome, Dysautonomia, history of elevated ANA (hence why I'm on a constant watch for Lupus), undiagnosed issue with knees that causes constant pain and moderate-to-severe swelling, severe loss of lordosis in the neck (my cervical spine is ramrod straight, in layman's terms)
All in all, it's safe to say I have too many acronyms applied to me, lol. I first became chronically ill at the age of 10 after a whiplash injury. Unsurprising as spinal cord trauma often triggers the onset of Fibromyalgia. A following bout of Epstine-Barr Virus when I was 13 only added insult to injury and life rapidly went downhill from there. More than once in my life, I looked like a heroin junkie from the track marks on my arms as doctor after doctor after doctor ran numerous tests trying to find out what was wrong with me. I didn't officially receive my Fibromyalgia diagnosis until I was 18. Eight years after the onset of trademark FMS symptoms. I didn't find out about the Chiari until a few years ago, after neurological symptoms in my hands and arms warranted a cervical MRI. Come to find out after I requested my medical records, the low-lying cerebellar tonsils were noted on a MRI when I was 16. The doctor I was seeing then never told me.
Throughout my life, I'd heard the same phrase over and over again. 'You're too young.' Whether it was to be in so much pain, or to have so many symptoms, or to be given any sort of pain relief. I was too young. I think many doctors thought I was making it up, until at the age of 14 one doctor discovered my 1:640 ANA. I was sent to an internist who, though it had only been a couple of months, ordered a second one. It was 1:1280 by then. Lupus and other autoimmune panels came back negative. No one had a clue what was wrong.
By the time I finally found the doctor I'm now seeing, the doctor I had been seeing before him completely ignored the fact I'd jumped from 95 lbs at 5'7 (a combination of an overactive thyroid and anorexia) to 185 lbs in only a few months. My current doctor (who I adore and have followed from partnership to partnership loyally and would do to the ends of the earth) ran a thyroid panel. An uptake and scan came next, followed by an ultrasound. I had Hashimoto's Thyroiditis. My free T3 and T4 were insanely low, indicating, obviously, hypothyroidism. He got me started on synthroid and not only did I discover my weight shedding and my insane mood swings vanishing, my energy was coming back.
He's also the one that discovered the Chiari, the Sjogren's, and pretty much everything else aside from the HMEDS, which was diagnosed by a rheumatologist that I'm also currently seeing. (I have to admit, it was pretty fun when she was evaluating me for it when I made her cringe by touching my right thumb to the inside of my right forearm! LOL!)
I've tried to work off and on throughout my life. My longest stint of employment was 3 months. Between my chronic migraines and the widespread pain in my body, I call off too often for anyone to keep me employed. If I had a schedule to know when my body would hit a flare and have me bedridden with pain, or when a migraine would knock me on my ass for anywhere from three to ten days in which I'm in bed with a sleep mask on and earplugs in because the faintest light or tiniest sound is excruciating and has me vomiting into the nearest receptacle, that would be a different story I think. But the Spoonie body comes with no such convenient alert system.
On good days, I'm Supergirl. I can zoom around the house, sweeping floors, vacuuming rugs, doing laundry, dusting surfaces, you name it. I'm a one woman cleaning army. But those days are random. Usually instead of good days, I have tolerable days, where I can move around with a moderate level of pain and take care of my own needs, maybe go grocery shopping with my mother, or go to the doctor if I have an appointment that day.
Bad days are spent abed, typically with ice or heat on my knees, neck and head while I watch a show or putz around on Twitter. Those days, I can't even take care of my own needs, aside from making it the few feet to the bathroom and back. Eating is out the window; even if I could manage to fix myself food, I have no appetite to eat, and the nausea from the level of pain I'm in would ensure that it would immediately come right back up. On bad days, I've even had to cancel doctor appointments. I'm literally too sick to go to the doctor. Thankfully, my doctors understand.
I've seen ableists comment that 'well I know people with disabilities that work, you're just lazy.' They fail to understand that not everyone that is disabled has the same disability and the same restrictions. They don't understand that I have to be careful with how hard I cough, or that sneezing is a gamble, or even rolling over has to be done with care. Why? Because every one of those things risks dislocating a rib, or my shoulder blade. It sounds like hyperbole, but it's completely true. I've subluxed (partially dislocated) ribs rolling over before. In bed. I've fully dislocated ribs during coughing fits with bronchitis.
Having hypermobile EDS means that the most normal, every-day activities risks joint dislocation for me. I can be walking and suddenly my ankle will roll of its own accord. The only thing I can do during those moments is pray that my ankle, knee or hip doesn't dislocate on the way down. Hypermobile EDS means that I'm 'double-jointed.' For some, the extent of the hypermobility is limited to certain joints. But my hypermobility is wide-spread; it extends to every joint in my body. Hypermobility is caused by the tendons and ligaments being too loose to properly support the joints to keep them from bending further than they should, or to keep them from dislocating. Which makes hyperextension very easy, and dislocation hilariously simple to achieve on accident.
It also means I'm doomed to the inevitability of arthritis in every hypermobile joint, in the long run. I already have it in my neck, in my shoulders and in my hips, as well as in my knees to a small degree, though they're not certain as to the full extent of what's going on with my knees. They're an enigma to them as much as myself.
Fibromyalgia is another one that's misrepresented by TV ads and what have you. You'll see ads for Lyrica or something and it's like 'take one pill and life is great again!' Yeah, no, that's not how it works. Let me clear something up straight away here; fibromyalgia is different for every patient. Every single one. It's a syndrome, which means it's a conglomeration of symptoms and the range of severity of these symptoms is variable from patient to patient, and not every patient will have every symptom or even the same symptoms. My experience with fibromyalgia is one of widespread aches and pains, and a constant feeling of having a sunburn all over my body. Sometimes that feeling of being sunburned intensifies into being wrapped in electrified barbed wire. Fibro-fog is a term many people have likely heard; it's a common symptom of fibro, where we deal with a period of mental fog. It can make us forgetful and/or disoriented, and we tend to do some pretty silly things during these times.
My most memorable was as follows - I went to get a bowl of cold cereal. We keep our cold cereals in a cabinet at the end of the kitchen, and our sugar bowl on a near by rolling cart that our microwave is on. I fetched both of these things as well as the milk from the fridge as it was nearby. I took care of making my bowl of cereal, and put the sugar in the fridge, and was trying to fit the milk into the microwave and was getting extremely frustrated with it not fitting before I realized what I was doing and laughed at myself. I put the cereal away and returned the milk to the fridge. I only found out that the sugar was in the fridge several hours later when my brother asked why the sugar bowl was in the refrigerator.
Times like these, we can only laugh at ourselves. There's really no other choice, if you don't, you'll likely wind up crying at how ridiculously frustrating it is trying to get your brain to cooperate and perform the most simple of tasks.
All in all, daily pain of varying intensity is my life. There isn't a single second of any day, even good ones, in which I am completely pain free. Pain medications (even narcotics, like the Norco that I am now on) don't eliminate the pain, they just take the edge off, but believe me, that is a wonderful improvement. I use various assistance devices to get through the day, especially if I have to be out and about, whether it's braces on various joints, one or both arm-cuff crutches, or, my nemesis, the motor chairs in stores. (I hate those things...and the judgmental looks people give me when I have to use them.)
I understand that living in constant pain is a hard concept for able-bodied people to understand. Pain is fleeting for you. It's temporary. It goes away when an injury heals, or after a few moments when you stub your toe, or when you take Tylenol for your headache. But for most of us, it never, ever goes away completely. Every second of every day, we are in pain somewhere. It never stops. It never goes away. It interferes with our lives in every aspect.
And it leaves us exhausted.
Chronic Fatigue Syndrome is a big one that many of us have, and that truly adds insult to injury. You hear the term Chronic Fatigue Syndrome and you think 'oh, you're just tired.' No. Chronic Fatigue Syndrome, or, as it's now known, myalgic encephalomyelitis, is more than being tired. It's being constantly exhausted and that exhaustion never goes away no matter how much we sleep or rest. It often comes with aches and pains of its own, as well. I have both insomnia and CFS, and it is absolute hell. It's bad enough sleeping and waking up just as exhausted as when I went to sleep. It's worse feeling more and more exhausted because I can't sleep for as long as 72 hours before I finally manage to crash out.
It's been found that people with chronic illness, especially those with chronic fatigue, are functioning in a perpetual state of exhaustion that would be comparable to a normal person not sleeping for three days and then attempting to function normally. This sounds hyperbolic, but, again, it isn't.
Some of us - myself included - get so exhausted or in so much pain that we can't even shower or bathe daily. And if we express this while talking amongst ourselves because we know that we'll find a sympathetic ear in one who can understand, oft times someone else will horn into the conversation with how 'disgusting' it is.
While I feel happy for those of you that can shower daily, or eat daily, or do anything else normal on a daily basis, we can't. Not always. So instead of calling us out on how "lazy" and "disgusting" we are, try imagining living in a body that is constantly at war with and attacking itself. That is constantly exhausted and in agony. And that we do what we can, often seeing to the most important things first, because we know we have to pick and choose what gets done every day. Sometimes, a poor man's bath (washing up with a cloth in the stank zones) is the best we can do because we just don't have the spoons to do more, having used them on more important ventures. Sometimes, we can't even do that. Your judgment is not necessary nor desired. It's just rude and completely lacking in compassion.
The fact is, I am constantly exhausted, I'm constantly in pain, and my body is literally attacking itself with its own immune system. There isn't thing one I can do about any of it. I wish I could. I wish I had a different body. But I don't. I don't know why I have the body I do, with the problems it has. But I do. I make the best out of it, but sometimes, my best is just getting out of bed to go to the bathroom and coming back to take a nap because walking a grand total of 30 feet was so fucking exhausting that I need one. And you know what? I'm getting okay with that.
I've had doctors judge me, I've had strangers judge me, I've had family judge me. I'm not going to be judgmental of myself in a negative manner. Not when I'm in as much pain as I am already. If the best I can do isn't good enough for anyone else? Screw them.
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