![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
requiemsIt was December 26th 2016 when my life ended.
Boxing day, the day after Christmas, two days after my twenty-fifth birthday. A day where you're supposed to be having turkey leftovers... or in my case, chowing down on leftover birthday cake through to new year. Instead I could barely swallow and breathing was difficult and my mouth tasted vile. I already knew what the problem was before I retreated to the mirror and saw the tell-tale white spots all over my inflamed tonsils.
This was hardly my first dance with tonsillitis. This was hardly my first brush with it that month, either; I'd spent much of December 2016 fighting off colds and had also lost my voice on one occasion (worsened by me going to work because of my constant call-ins; when you work effective retail as front of house for a museum, you absolutely need your voice when you have radios to be working with and you're alone most of the time). Battling through to go to my job was despite my better judgement, as it in turn led to said lost voice and another day off, but whatever. I had reasons. I'd had a lot of time off, I only worked weekends anyway, and I absolutely could not afford to have my pay docked (I was barely making ends met as it was, had begged for more hours from my bosses to no avail, had spent over a year looking for other work to no success and been rejected from my dream scenario which even now I'm still not over...) so I did what I always did with tonsillitis: rinse my mouth with Colgate plax and go back to bed, crossing my fingers that I would be better by the following weekend.
When you get sick, you sleep it off. This is a method tried and true and people do it because it works.
Except that time it didn't work. And nor has it, any day since.
The reason "sleeping it off" works is because your sleep is restorative. You wake up refreshed - arguably, because if you're not a morning person it's going to take you time to feel it, but once you shake off the throes of sleep you are able to do things. The ability to do is what restorative sleep gives you. You are able to do a countless number of tiny tasks built into your daily activities, countless things for the next eighteen hours or so until bedtime. Maybe you cut sleep last night or worked a long shift yesterday and you're struggling today, or you're getting over a cold, or you've been pushing yourself too much for too long and you feel run down and burnout, but your things output is still high, and you know your current state is only temporary until whatever future point, that all you really need to do is let your body rest and recuperate with its restorative sleep.
You never realise how much you actually do in a day until you can barely do anything. I sure didn't. When you have the effective flu every day, where your body is sluggish and fatigued, where the cognitive fog is so thick it leaves you scratching around your head for a word or phrase, when you lose a word part way through a sentence and have to abandon it all together, when there's absolutely no way you can muster energy or be physically able to do any of your daily tasks or household chores beyond perhaps basic hygiene and feeding yourself, there's no do-overs. There's no putting it off until you feel better in a few days time. This is it. This is what you get to live with now. Maybe you have to walk those ten metres outside and at the end of it it feels like you've just done a ten hour shift at front counter at McDonalds, when in actuality it's only been thirty seconds. You have to find a way to do the laundry when you only have the energy, the capability, to walk to the bathroom and back. You have to find a way to stand in the shower even though it's taken ten hours of resting to feel up to it and it then wipes you for more and longer, and if you're unlucky, will also trigger dizziness and vertigo for the rest of the day. There are some things that, no matter how sick you are, you can't put off. And if you're sick forever, you have to find a way to do stuff you should not be doing with your health as it is, would never have done if you were the you of the past with the flu with future better health to look forward to.
Scratch the flu analogy. It's done and used. The best I've ever equated the frustration of M.E. to is depression - which is a been there, done that, still experience secondary, but it's the most effective, blunt comparison. When you're lying in bed and depressed, you're physically capable of getting out of bed. It's just your brain that's stopping you: once you get out of it, you've succeeded in step one. Maybe you need medication. Maybe you need support. Maybe there's a certain line from a certain media that resonated with you and put what you felt into perspective and in turn helped you climb out of that hole (looking at myself and personal experience there). Maybe you need something to help you do that, but once you find that support? Once you start doing things? You're winning.
That's an over-simplification, but now consider the opposite. Where your brain is reasonably healthy and not self-destructive, and instead you physically can't get out of bed.
You want to. Your brain is wired and awake and wants to do all the things - so wired, because insomnia is a weird thing to come coupled with M.E., but so it goes. And there is no winning when you do get out of bed in this scenario. You're running on fumes no matter what you do, the tiny remnants of a leftover battery all that's left for you to work with, attempting a couple of parts from a much bigger task and then having to rest for hours because you dared to eat, to wash your hair, to need the bathroom.
I've been in both scenarios. I can't say I prefer one over the other. But one is definitely more doable in terms of working with - and through it - to an alternative outcome.
As it stands, there is nothing to be done for my M.E.. I'll never be able to shake my chronic illness or sleep it off, no matter how much time I spend in bed - and I need a lot of it. Ten minimum. Twelve is better. Fourteen to maybe be able to do a couple of small cleaning tasks on top of the very little else. Seven hours of sleep to do a full eighteen hour plus day is a laughable concept to me now, my balance of asleep-and-awake something reversed. My job now is the additional time spent resting and I'm still scraping the bottom of the barrel in terms of energy. It's almost unbearable.
Here's the thing. Somewhere between my birthday and Boxing Day, I had lost the ability to have restorative sleep.
I slept and slept following December 26th 2016 and spent so much time in bed, asleep or otherwise, and two weeks later into the new year I was still sick. Not quite with tonsillitis anymore, but something... else. Something more. Like a virus that never went away.
Really, that's exactly what it was. Masqueraded itself in winter as tonsillitis and never left; it was only after a particularly strong dose of antibiotics that my symptoms stabilised into what they've roughly been for the past two years and my now-baseline was established, and I don't think that's coincidental. Whatever was the cause, the catalyst for my M.E., was dead. Unfortunately, that took four months to achieve, and at that point, it was too late for me.
When you're sick, you'll reach that point where you're frankly, sick of it. 'What if I never get better?', your brain prompts idly in your self-pity and misery. 'This is awful. It's been four days and I've had enough to last me a lifetime.' Of course you rationalise that you will get better eventually, and you do, and your life moves forward until the next illness strikes and you're in bed for another week with some bug, but there's always that silver lining, that knowledge through the haze that enough rest and the right medication will make it better, and your life will be returned to you.
(What happens if you never get better?)
I might have a diganosed chronic illness. But I am also sick. At the time of writing [May 6th 2019] I have been sick for two years and five months.
Specifically, I have been sick for 862 continuous days.
862 days.
(This happens.)
It's utterly unfathomable that I am left like this.
There is no deadline to this. No end. M.E. isn't fatal. I get to live the rest of my natural life with it, a lifetime of being sick; and each and every day I am ultimately stuck in limbo. Waiting. Wasting. Diagnosis was just that, diagnosis, and there is nothing after it for patients with M.E.. There is no treatment. No aftercare. No suggestions and guidelines that are not harmful. No cure.
How is that acceptable? How has there been no further progress in the past twenty years? Easy. We are not taken seriously. We are dismissed as hysteria. We are not believed.
It should not be like this.
Personally, diagnosis was a road and a half involving self-diagnosis due to said disbelief and ultimatums from specialists that were wildly wrong calls, permanent deficiencies, and rampant fatphobia. I lost a lot, and I mean a lot, of weight prior to getting sick. My illness was not caused by my weight. My weight is caused by it, as I put most of what I lost back again again... and thanks to my chronic illness, losing it is not a ready option. You think I want to be like this? Kindly get off my back. Go find some answers to my illness and a solution that means I can stand for more than a few seconds without suffering a consequence and then I'll get back to you.
It's frustrating that we've reached 2019 with little to show for it in terms of progress - M.E. isn't new. It's especially baffling when two generations of women in my family are all presenting similar symptoms but have been diagnosed with four different conditions. Only guesswork exists for M.E. and the others illnesses that flock with it - fibromyalgia, POTS, EDS, to name a few - all under-researched and underfunded, with symptoms that present differently and vary dramatically from person to person. On a good day I'm moderate on the spectrum, but housebound and hidden away. During a flare I'm severe, where even getting out of bed is nigh impossible and forget any other basic need to keep myself alive. You need to go to the bathroom? Cool, we'll get to that in maybe two hours when I'm able to move my legs more than an inch from under the covers because right now I'm not sure they exist. At the end of it all, the medical community at large believes my illness does not exist.
Ultimately? I am left to suffer and manage my M.E. alone.
Some days I truly envy conditions that kill you. It's a weird mental place to be. At least there is a determined end. At least there is a time limit, and not a vague gesture to the ether - not this for the rest of my life.
When I say my life ended two days after my 25th birthday, it's a truth. My life as it was ended and I am left with what I have now; a husk, a shadow of a life and a shadow of a person. Not living, but surviving. No goals. No career. No concrete plans save for the next time my groceries will be delivered and the set aside days to recover from that. There's no integration or adjustments to be had when you're one of the millions missing. Vacations and travelling and events are gone, a thing of the past; as long as I have M.E. I will never be able to go to Disneyland Paris again, and some days that sadness is crippling. You know that place you vacationed to a lot as a kid, that was almost like a second home to you, that you loved so much and were not able to go to in your early twenties because you're a younger millennial and there are no entry level jobs and you literally have no money? That's Disneyland Paris for me. The irony now is that I have the money to do it due to benefits providing a stable income, but I'm physically unable to.
It hurts. So much of what I've had to let go of, that I should not have ever had to let go of, hurts.
There are some things I am still able to do. Some things that I have battled with and fought for because I absolutely could not let them go or be unfinished, like a 160k fanfic - just so that, for that ending moment, I could stare my illness in the eye and tell it it does not own me. But it's not enough. No matter how much small good there is, there is so much bad, so much loss. So much I've mourned, and will only continue to do so as nothing changes.
I am held hostage by circumstance, with something I came down with that never went away and with life never returning to normal, by no wrong-doing save perhaps a pre-disposition towards maybe one day triggering M.E. if circumstances aligned just so - and in this timeline, they did. I don't get to grow in society's eyes. I don't get to change, as it's hard to do that regardless when you spend most of your life - survival - asleep.
Watching life go on without you but still being here? That's M.E., in its cruelest form.
That's me.
M.E. Awareness Week runs from the 6th to the 12th May, ending with M.E. Awareness Day on the 12th May. I'm leaving this entry public for the duration of May (most likely). If you want to leave a comment, please bare in mind that all comments to this entry are screened.
I will be making several entries this week; not as many as I would have liked (M.E. in action right there) but I have some other thoughts pre-prepared, so those will also be posted in the coming days.
If you'd like to know more about M.E., perhaps the best instance I give to you is watching Unrest, a documentary by Jennifer Brea. Its validating and heartbreaking for me, but it's not for me. It's for you, to help the world understand what those with M.E. go through communally, as well as an individually.
Boxing day, the day after Christmas, two days after my twenty-fifth birthday. A day where you're supposed to be having turkey leftovers... or in my case, chowing down on leftover birthday cake through to new year. Instead I could barely swallow and breathing was difficult and my mouth tasted vile. I already knew what the problem was before I retreated to the mirror and saw the tell-tale white spots all over my inflamed tonsils.
This was hardly my first dance with tonsillitis. This was hardly my first brush with it that month, either; I'd spent much of December 2016 fighting off colds and had also lost my voice on one occasion (worsened by me going to work because of my constant call-ins; when you work effective retail as front of house for a museum, you absolutely need your voice when you have radios to be working with and you're alone most of the time). Battling through to go to my job was despite my better judgement, as it in turn led to said lost voice and another day off, but whatever. I had reasons. I'd had a lot of time off, I only worked weekends anyway, and I absolutely could not afford to have my pay docked (I was barely making ends met as it was, had begged for more hours from my bosses to no avail, had spent over a year looking for other work to no success and been rejected from my dream scenario which even now I'm still not over...) so I did what I always did with tonsillitis: rinse my mouth with Colgate plax and go back to bed, crossing my fingers that I would be better by the following weekend.
When you get sick, you sleep it off. This is a method tried and true and people do it because it works.
Except that time it didn't work. And nor has it, any day since.
The reason "sleeping it off" works is because your sleep is restorative. You wake up refreshed - arguably, because if you're not a morning person it's going to take you time to feel it, but once you shake off the throes of sleep you are able to do things. The ability to do is what restorative sleep gives you. You are able to do a countless number of tiny tasks built into your daily activities, countless things for the next eighteen hours or so until bedtime. Maybe you cut sleep last night or worked a long shift yesterday and you're struggling today, or you're getting over a cold, or you've been pushing yourself too much for too long and you feel run down and burnout, but your things output is still high, and you know your current state is only temporary until whatever future point, that all you really need to do is let your body rest and recuperate with its restorative sleep.
You never realise how much you actually do in a day until you can barely do anything. I sure didn't. When you have the effective flu every day, where your body is sluggish and fatigued, where the cognitive fog is so thick it leaves you scratching around your head for a word or phrase, when you lose a word part way through a sentence and have to abandon it all together, when there's absolutely no way you can muster energy or be physically able to do any of your daily tasks or household chores beyond perhaps basic hygiene and feeding yourself, there's no do-overs. There's no putting it off until you feel better in a few days time. This is it. This is what you get to live with now. Maybe you have to walk those ten metres outside and at the end of it it feels like you've just done a ten hour shift at front counter at McDonalds, when in actuality it's only been thirty seconds. You have to find a way to do the laundry when you only have the energy, the capability, to walk to the bathroom and back. You have to find a way to stand in the shower even though it's taken ten hours of resting to feel up to it and it then wipes you for more and longer, and if you're unlucky, will also trigger dizziness and vertigo for the rest of the day. There are some things that, no matter how sick you are, you can't put off. And if you're sick forever, you have to find a way to do stuff you should not be doing with your health as it is, would never have done if you were the you of the past with the flu with future better health to look forward to.
Scratch the flu analogy. It's done and used. The best I've ever equated the frustration of M.E. to is depression - which is a been there, done that, still experience secondary, but it's the most effective, blunt comparison. When you're lying in bed and depressed, you're physically capable of getting out of bed. It's just your brain that's stopping you: once you get out of it, you've succeeded in step one. Maybe you need medication. Maybe you need support. Maybe there's a certain line from a certain media that resonated with you and put what you felt into perspective and in turn helped you climb out of that hole (looking at myself and personal experience there). Maybe you need something to help you do that, but once you find that support? Once you start doing things? You're winning.
That's an over-simplification, but now consider the opposite. Where your brain is reasonably healthy and not self-destructive, and instead you physically can't get out of bed.
You want to. Your brain is wired and awake and wants to do all the things - so wired, because insomnia is a weird thing to come coupled with M.E., but so it goes. And there is no winning when you do get out of bed in this scenario. You're running on fumes no matter what you do, the tiny remnants of a leftover battery all that's left for you to work with, attempting a couple of parts from a much bigger task and then having to rest for hours because you dared to eat, to wash your hair, to need the bathroom.
I've been in both scenarios. I can't say I prefer one over the other. But one is definitely more doable in terms of working with - and through it - to an alternative outcome.
As it stands, there is nothing to be done for my M.E.. I'll never be able to shake my chronic illness or sleep it off, no matter how much time I spend in bed - and I need a lot of it. Ten minimum. Twelve is better. Fourteen to maybe be able to do a couple of small cleaning tasks on top of the very little else. Seven hours of sleep to do a full eighteen hour plus day is a laughable concept to me now, my balance of asleep-and-awake something reversed. My job now is the additional time spent resting and I'm still scraping the bottom of the barrel in terms of energy. It's almost unbearable.
Here's the thing. Somewhere between my birthday and Boxing Day, I had lost the ability to have restorative sleep.
I slept and slept following December 26th 2016 and spent so much time in bed, asleep or otherwise, and two weeks later into the new year I was still sick. Not quite with tonsillitis anymore, but something... else. Something more. Like a virus that never went away.
Really, that's exactly what it was. Masqueraded itself in winter as tonsillitis and never left; it was only after a particularly strong dose of antibiotics that my symptoms stabilised into what they've roughly been for the past two years and my now-baseline was established, and I don't think that's coincidental. Whatever was the cause, the catalyst for my M.E., was dead. Unfortunately, that took four months to achieve, and at that point, it was too late for me.
When you're sick, you'll reach that point where you're frankly, sick of it. 'What if I never get better?', your brain prompts idly in your self-pity and misery. 'This is awful. It's been four days and I've had enough to last me a lifetime.' Of course you rationalise that you will get better eventually, and you do, and your life moves forward until the next illness strikes and you're in bed for another week with some bug, but there's always that silver lining, that knowledge through the haze that enough rest and the right medication will make it better, and your life will be returned to you.
(What happens if you never get better?)
I might have a diganosed chronic illness. But I am also sick. At the time of writing [May 6th 2019] I have been sick for two years and five months.
Specifically, I have been sick for 862 continuous days.
862 days.
(This happens.)
It's utterly unfathomable that I am left like this.
There is no deadline to this. No end. M.E. isn't fatal. I get to live the rest of my natural life with it, a lifetime of being sick; and each and every day I am ultimately stuck in limbo. Waiting. Wasting. Diagnosis was just that, diagnosis, and there is nothing after it for patients with M.E.. There is no treatment. No aftercare. No suggestions and guidelines that are not harmful. No cure.
How is that acceptable? How has there been no further progress in the past twenty years? Easy. We are not taken seriously. We are dismissed as hysteria. We are not believed.
It should not be like this.
Personally, diagnosis was a road and a half involving self-diagnosis due to said disbelief and ultimatums from specialists that were wildly wrong calls, permanent deficiencies, and rampant fatphobia. I lost a lot, and I mean a lot, of weight prior to getting sick. My illness was not caused by my weight. My weight is caused by it, as I put most of what I lost back again again... and thanks to my chronic illness, losing it is not a ready option. You think I want to be like this? Kindly get off my back. Go find some answers to my illness and a solution that means I can stand for more than a few seconds without suffering a consequence and then I'll get back to you.
It's frustrating that we've reached 2019 with little to show for it in terms of progress - M.E. isn't new. It's especially baffling when two generations of women in my family are all presenting similar symptoms but have been diagnosed with four different conditions. Only guesswork exists for M.E. and the others illnesses that flock with it - fibromyalgia, POTS, EDS, to name a few - all under-researched and underfunded, with symptoms that present differently and vary dramatically from person to person. On a good day I'm moderate on the spectrum, but housebound and hidden away. During a flare I'm severe, where even getting out of bed is nigh impossible and forget any other basic need to keep myself alive. You need to go to the bathroom? Cool, we'll get to that in maybe two hours when I'm able to move my legs more than an inch from under the covers because right now I'm not sure they exist. At the end of it all, the medical community at large believes my illness does not exist.
Ultimately? I am left to suffer and manage my M.E. alone.
Some days I truly envy conditions that kill you. It's a weird mental place to be. At least there is a determined end. At least there is a time limit, and not a vague gesture to the ether - not this for the rest of my life.
When I say my life ended two days after my 25th birthday, it's a truth. My life as it was ended and I am left with what I have now; a husk, a shadow of a life and a shadow of a person. Not living, but surviving. No goals. No career. No concrete plans save for the next time my groceries will be delivered and the set aside days to recover from that. There's no integration or adjustments to be had when you're one of the millions missing. Vacations and travelling and events are gone, a thing of the past; as long as I have M.E. I will never be able to go to Disneyland Paris again, and some days that sadness is crippling. You know that place you vacationed to a lot as a kid, that was almost like a second home to you, that you loved so much and were not able to go to in your early twenties because you're a younger millennial and there are no entry level jobs and you literally have no money? That's Disneyland Paris for me. The irony now is that I have the money to do it due to benefits providing a stable income, but I'm physically unable to.
It hurts. So much of what I've had to let go of, that I should not have ever had to let go of, hurts.
There are some things I am still able to do. Some things that I have battled with and fought for because I absolutely could not let them go or be unfinished, like a 160k fanfic - just so that, for that ending moment, I could stare my illness in the eye and tell it it does not own me. But it's not enough. No matter how much small good there is, there is so much bad, so much loss. So much I've mourned, and will only continue to do so as nothing changes.
I am held hostage by circumstance, with something I came down with that never went away and with life never returning to normal, by no wrong-doing save perhaps a pre-disposition towards maybe one day triggering M.E. if circumstances aligned just so - and in this timeline, they did. I don't get to grow in society's eyes. I don't get to change, as it's hard to do that regardless when you spend most of your life - survival - asleep.
Watching life go on without you but still being here? That's M.E., in its cruelest form.
That's me.
M.E. Awareness Week runs from the 6th to the 12th May, ending with M.E. Awareness Day on the 12th May. I'm leaving this entry public for the duration of May (most likely). If you want to leave a comment, please bare in mind that all comments to this entry are screened.
I will be making several entries this week; not as many as I would have liked (M.E. in action right there) but I have some other thoughts pre-prepared, so those will also be posted in the coming days.
If you'd like to know more about M.E., perhaps the best instance I give to you is watching Unrest, a documentary by Jennifer Brea. Its validating and heartbreaking for me, but it's not for me. It's for you, to help the world understand what those with M.E. go through communally, as well as an individually.
