Number Witch

I'm a stand-up gal who can't stand up. Instead, I write. I write about my experiences as a person navigating life with a mysterious chronic illness.  I write about how important scientific literacy and appreciation are in fighting illness and suffering of all kinds. I write because I hope my excruciatingly honest descriptions of my experiences will raise awareness, empathy, and compassion that will translate into advocacy for people with chronic and terminal illnesses.  I write because I'll explode into a heap of ennui and horrible things -like whatever the opposite of chocolate is- if I don't.  What's a Number Witch? “Number Witch” is the literal translation of the compound word for "computer" in Icelandic. I find this linguistically interesting and generally hilarious.

[numberwitch]

Back to the Future of critical thinking

Not only is this a day to celebrate the fact that those of us who are lucky enough to be at least 30 years old today have just traveled 30 years into the future (taking a slightly longer route than Marty, Jen, and Doc did), this is a great day to remind ourselves of the importance of critical thinking and good internet citizenship. This Tumblr has gathered the screen shots from every time someone on the Internet has mistakenly though it was Back to the Future Day and passed it on. http://martymcflyinthefuture.tumblr.com/ Being wrong about this is not a big deal in itself, but it serves as an amusing example of the way we all repost things we haven't bothered to fact check. If we aren't willing to fact check such a clear-cut thing as the correct date of Back to the Future Day, how do we respond to more complicated matters? When the subject is politics, economics, or social issues, the ramifications of reposting something that is inaccurate can be serious. When we repost a video or photo that has been edited to make a person or group we don't like look bad, when we repost incorrect information that encourages injustice, we contribute to the dumbing down of our society. We make the world worse. This isn't a chastisement so much as a warning to us all. And this is *not* directed towards one part of the political spectrum or another. We're all guilty of having passed on something on social media because it seemed to confirm our world views. When a post confirms our preconceived ideas, we need to be especially careful about fact checking. Let's all contribute to raising the quality of our interactions and discourse -online and in person- as we continue traveling together into the future.

[numberwitch]

One sonnet about a ring to rule them all: Gastroparesis awareness in a sappy love poem

I’ve lost weight in my fingers. How much weight do you have to lose for *that* to happen? It was already bad enough when my hip, pelvic, and thigh bones began to painfully protrude. Then I lost weight around my collarbones and shoulder blades. For some reason, I thought those areas immune to changes in weight. What do collarbones and shoulder blades have to do with weight? That was weird enough, but my fingers? And my ring finger at that. I’d say it’s cruel, if illness could care enough to be cruel.

My wedding ring slips along my finger, precariously threatening to fly off. It upsets me. It’s too sacred, too important a thing for illness to tease me with. Illness has crossed a line.

So I responded in the obvious way: I wrote my first sonnet, and a Shakespearian sonnet to boot. (What? You can’t really think that a poetry lover who’s studying Shakespeare won’t at least try to write a sonnet, can you?)

It may not be the best bet for a positive reception —those who don’t know Shakespeare’s sonnets won’t know the context, and those who do know Shakespeare’s sonnets will know how laughably inferior mine is. But set all that aside, and if you can’t appreciate the form, appreciate the content; if you can’t appreciate the content, appreciate the form. If you can’t appreciate either, join me in my temporary departure from cynicism about Romance and appreciate the genuine, sappy sentiment.

August is Gastroparesis Awareness Month. In the spirit of raising awareness of Gastroparesis, Dumping Syndrome, and all digestive motility disorders —and, you know, for The Love, here’s my first attempt at a sonnet:

Between finger and ring a growing space True shows my love for you does still increase, Despite the coming day on which your face Will be obscured by time in its short lease.

Ring on heart’s finger grows as grows the love That of the ring a symbol made indeed, As grows does my love in order to prove The symbol, though it please, we do not need.

As, ah! My love outgrows the bounded ring, Which only seemed to grow as finger slimmed. My love will stand clichés so it may sing, And not by fade of flesh will it be dimmed.

Diminish my flesh may, but, my love, no; The only thing my love will do is grow.

[numberwitch]

Start in dissatisfaction: birthday musings on anger

I started off wanting to forget that it was my birthday. Ignore it until it went away. I've been so sick the last two weeks. Barely sleeping, barely eating. How can a person function like that? They can't, that's how. Barely moving, barely able to open my eyes or speak. So much to write, so much I NEED to write, but no way to get it out of my head. Then the clouds come, and only the feeling that there was something I was supposed to do remains. A vague feeling. Eat? Have I eaten today? Yes, I tried that. Didn't work. Must be something else I'm forgetting. But there's just too much exhaustion. My body seems to have been replaced, bit by bit, with Fatigue. Can Fatigue forget to do something? Fatigue doesn't seem to forget anything, or let anything go. A birthday party? Birthday cake? Interacting with people, eating, moving, enjoying? How can these things exist in my state? They can't, can they? So I'm angry on my birthday. I'm angry that I'm sick. I'm angry at all the reasons I don't have adequate medical care: I'm FURIOUS at science deniers: anti-vaxxers, anti-GMO reactionaries, evolution deniers, climate change deniers. They are a big reason why I'm still sick. I need science to save and improve my life, and they DENY it? By doing so, they deny my right to be healthy. They deny that right to everyone, themselves included. How DARE they? What gives them the right to cause such suffering and devastation through their ignorance and fear? Nothing. They have NO RIGHT to do this to anyone. I'm furious at the lack of critical thinking that leads to science denialism, which leads to a lack of medical research, which leads to no treatments; stupid biases of medical professionals who can't handle their own ignorance; no social services for young adults; friends and family who don't want to see how bad things are; my guilt at not trying harder to get help. It was my birthday, shouldn't there have been help for my birthday? It was my birthday, and I was angry? How ungrateful! A friend from my youth who shares my birthday didn't get to see this one. Her illness saw to that. I'm alive to be angry on my birthday. I should be grateful. I am. I'm grateful to be alive, but why do I have to be reminded of all I can't do for my birthday? Or for your birthday? I grieve enough everyday, why rub my losses in with a birthday? Just ignore it. The next day will be just another normal day. No birthdays to remind me of loss. But then I've wasted a birthday. We only get a few. How can I justify ignoring one? My only 34th birthday, and I wanted to be done with it before it began. Enter the guilt, piled on top of the anger and sadness. Not the makings for a Happy Birthday to me. What's wrong with me? How dare I be so melancholy on my birthday? I assume something is wrong with my mind when I get like this. I've had enough people tell me it's ALL in my mind, so the idea is quick to come to me. But they were, and are, wrong. So was I. What's wrong with me? It's not a complicated problem of my mind. It's that I barely sleep or eat. No need to look for deeper problems, when the basics needed for survival are missing. This isn't an existential crisis (well, maybe a little), and it isn't a sign of "mental" illness -it's starvation and exhaustion. So stop being so hard on myself. Ok, ok, I'll try, but there's still the birthday issue. Must mark it somehow, but the usual means are not mine anymore. And I'm still so angry. So dissatisfied. So I started in dissatisfaction. I realized how powerful a place dissatisfaction can be. I started a year-long poem: writing one bit per day of being 34 years old, starting on my birthday. I want the genuine sense of temporality, the everyday, dailyness of a long poem being pieced together each day. I started reading a book I'd been meaning to start "someday". Starting it meant starting the larger project of (re)studying Montaigne. Back to my roots -but with much less satisfaction, and far more anger this time. I rethought a longterm poem project that I haven't been able to get going yet. It still isn't going, but it's still there. And The Book. The book that has been slowly coalescing for years. It's almost clear enough for me to see parts of it now. Maybe it'll only be a few more birthdays before I can see it well enough to make it exist outside of my head, too. I learned to be ok with the dissatisfaction, to use it to create -can I do the same with the anger? I'm slow to anger, and not used to feeling so much of it. Until I faced my birthday, I didn't realize how much anger I held. I have to find a way to accept it, as it will be useful in encouraging me to do what needs to be done. But it itches. It tosses and turns even though I can't. How do I use my anger as a productive force for good? What's the first step? Maybe it's to understand that's it's ok to be angry, even on my birthday.

[numberwitch]

Parts

I think in parts now. Fractions of a whole. Percentages. 1/2, 1/4, 1/8, 20%, 50% of a meal, an item of food, a drink. I don't think about eating a whole potato. I think of a 1/4 of a potato as a "whole potato" now, since that's the whole amount of it I'll be able to eat in one sitting. And my sittings last a long, long time. I don't think about eating a full meal. I think about which parts of a meal might become my meal. Which 200 calories of the 800 calorie meal are the most important? Start there. If I can eat another 100 calories, which to choose? 300 calories from one meal? Unlikely, but if I can manage it, which calories do I need most? I think in parts of me now, too. Where will these calories go? Where do I need them most? What part of me needs their energy? Too bad I can't direct them. But, if I could, where would I have them go? Which parts of me won't be there if I don't eat another 100 calories? Which parts stop working if I can't force more food in? Are the parts that are loudest when the calories don't come the parts that will stop first? Or do I need to worry more about the quiet parts of me? Maybe they're quiet because they're too tired to complain. I add up the parts of meals I eat in a day. In my mind, I place all the food on a plate and try to picture how it would all look together. Would it make one full meal? When everything I can force myself to eat in a day would make only a typical meal, I wonder if it is better to keep it all separated into parts in my mind. Does it seem like more if it's scattered in the picture in my mind like it was scattered throughout the day? Or does it seem like Enough if it's squished together on one imagined plate? If I can forget that this one imagined plate IS the whole -if I can pretend it is only a part- it feels better. For a while. But the parts, the wholes, the lack of wholeness, the lack of parts -parts I need- won't stay hidden for long, even in my imagination. Take another bite, another sip. Use the parts of these foods to feed my whole. But how long until the percentages become too small to matter? The numerator stays at 1. How long until the denominator becomes too large to notice?

[numberwitch]

"It could be worse"

"It could be worse." Yes. That phrase is true for all people at all times in all situations. Of course it could be worse. (It could also be better. Why don't they ever say that?) Platitudes like that aren't meant to help someone in a serious situation, they are meant to reduce the severity of the situation to levels that make the speaker comfortable. If someone can make my experience with severe illness seem no more important than their experience of having temporarily misplaced their keys, they don't have to acknowledge how bad things truly are for me and the millions who suffer as I do. They can keep living their lives, heads comfortably buried in the sand. "It could be worse" is meant to help people with relatively small problems expand their perspectives and be grateful for what they have. My lifelong struggle with chronic illness is not going to be put into perspective by the same thing that makes someone feel a little better when they have to spend an extra minute finding those keys. In fact, I find myself in the strange position of hoping my medical condition has the chance to get worse. There are two paths my future can take: living with a progressive illness, and dying. As only the latter is guaranteed, I hope to have the privilege of living with a progressive illness for as long as I can. For someone with a progressive medical condition, not only does the phrase "It could be worse" not help, it taunts. It isn't simply the case that it COULD be worse for me --it WILL get worse for me. That's my perspective, because that is my reality. I don't need platitudes to tell me this.

[numberwitch]

"You can beat this"

"You can beat this" A phrase people with any longterm illness hear often. It's meant to be supportive and inspiring, and in that sense, I appreciate the sentiment. But it isn't realistic, and in that sense, can turn out to be harmful in setting up expectations that can't be achieved. It makes a person who doesn't "beat" their illness think it is their fault they are still sick, or their fault if the illness kills them. The statement ends up supporting patient-blaming: if people are under the delusion that a patient can use will power, strength of character, intelligence, determination, or a positive attitude to heal themselves, then those deluded people are going to blame the patient for not getting better and assume the patient must not be trying hard enough, not be strong enough, or determined enough, or positive enough, so it's their fault they are still ill. That's not how it works. You can't use will power, strength of character, intelligence, determination, or a positive attitude to "beat" a disease. What you can do is use those qualities to help you figure out how to live in the best way possible with illness. These qualities can indirectly help me "beat this" by spurring me on to support and participate in scientific medical research. Prevention, treatments and cures that come from scientific medical research are the only true way to "beat" any illness. Figuring out how to live well despite illness may be interpreted by some as "beating" the illness, in that it means I will do everything I can to prevent the illness from further decreasing my quality of life, but that's a pretty loose interpretation. I don't consider that "beating" my illness, I consider it living. Perhaps illness has already "beaten me" in the sense of having taken good health from me. If illness has already beaten me, I no longer need to waste energy fighting it. That may sound defeatist, but I think there is hope to this story yet. I can use my energy, not to fight, but to learn to live well. Living well includes continuing to search for answers and treatments, and supporting research to make those answers and treatments a reality. I can't "beat" this illness without proper medical care, and I can't get that without scientific medical research. Want to help me "beat this"? Help me support scientific medical research.

[numberwitch]

A Thanksgiving Twist: gratitude for sadness and loss

Thinking about how much I'll be missing this year for Thanksgiving has me in a melancholy mood, so I'm trying to find something in this to be grateful for. Odd as it may sound, I've realized that I'm grateful for the ability to be sad. I won't be spending time with family and friends this Thanksgiving -I can't travel to them, and I'm not well enough to have them come to me. I won't be enjoying special food and drink -my digestive system is not healthy enough to admit more than the 8 foods I know I can tolerate. I won't been participating in the beloved rituals surrounding the holiday -my health is too poor for me to spend energy on anything but the basics. I'm grateful that I have family and friends to miss -though I can't be with them. I'm grateful that I am able to purchase food -though I can't eat much of it. I'm grateful that there are meaningful rituals surrounding the holiday -though I can't be part of them. I'm grateful that I have such good memories of Thanksgiving -people, food, ritual- that I have a reason to be sad in missing them. I'm grateful that I have the capacity to experience healthy emotions, like sadness. If I couldn't feel sad at my losses, there would be something very wrong with me. I'm also grateful that I can maintain a perspective that allows to me put my current, temporary sadness in context. But my gratitude is not limited to memories or the happy circumstances that allow me to be sad. I know many will be spending Thanksgiving in the hospital, "eating" their Thanksgiving meal through a feeding tube or IV, participating only in the rituals of the hospital that help them to survive. I'll be grateful if I'm able to spend Thanksgiving quietly at home with my husband, eating the same food I eat everyday, perhaps reading or studying if I have the energy, just resting if that's all I can do. I'll be sad that I'm missing so much, but grateful that I care enough to be sad.

[numberwitch]

Comfort

My poetic contribution to Dysautonomia Awareness Month:

http://bobisdysautonomia.blogspot.com/2014/10/soraya-exploring-dysautonomia-through.html

Please check out the other entries in the "Exploring Dysautonomia through the Arts" series. There is a lot of talent in the Dysautonomia Community!

Comfort "It'll be all right." In the beginning, that's what they say. You let the words settle into you, comfort you, like you're supposed to. Of course, it'll be all right. You learn it's a lie in slow,   sudden   bursts You're angry that they lie to you. You wish they'd stop They say that to everyone It doesn't mean anything anymore --to you Then they stop saying that --to you They say that to everyone --else It doesn't mean anything anymore --to them You're glad --at first-- that they aren't lying to you --anymore-- But what do you put there, where the lie used to go? What do you use to fill the    hole    --besides the longing for the lie?

[numberwitch]

Awareness of Absence and a Plea for Help

I didn't congratulate you on the birth of your baby, your new job, your new house. I didn't get excited that you are planning to travel, starting classes, getting married. I wasn't there to offer my compassion and condolences to you when you had a bad day at work, when you were ill, when you went through a break up, when you lost someone you love. I couldn't offer my support when you went through a challenge you weren't sure you could face; I couldn't offer my congratulations and express my pride when you met that challenge. I don't know how you’ve been recently. I don't know how your job or relationship is going; what your kids and parents and friends are up to. I didn't see your last status update. I don't know if you've posted anything at all recently. October is Dysautonomia Awareness Month. Because of Dysautonomia and related conditions, I haven't been aware enough to see to my own basic daily needs, let alone participate in awareness raising activities. While I do not expect anyone to have noticed my absence earlier, I hope that this explanation of my absence can now be used to raise awareness, if only in the negative sense of making you aware of some of what I have NOT done because of Dysautonomia. I'm not doing a variety of jobs in a variety of careers. I'm not making a positive difference in the world through my work. I'm not adding my productivity and viewpoints to a world that desperately needs people who care and are willing to work hard to change things. More practically and perhaps crudely, I'm not making money, I'm not funding a retirement fund, I'm not contributing to financial security for myself and for my family. On the contrary: my illness drains what resources exist in my family, my community, the world. I'm not getting the PhDs in philosophy and literature and math and physics I dream about. I'm not practicing any of my instruments. I'm not getting the life-affirming and sanity-sustaining intellectual stimulation of learning from studying that I need everyday. I'm not coming up with creative solutions to complicated problems. I'm not inventing the software that could help patients like me put all the puzzle pieces together and find cures. I not on my way to visit my parents, siblings, siblings-in-law, cousins, aunts and uncles, childhood friends. I haven't seen most of them in years. I have a nephew and a niece I still haven't met, and another niece I've only met twice. I'm not providing the love, support, good-natured spoilage, and back-up parenting to them I want to provide as their aunt. I could go on, of course. And this is just the lost potential from illness of one person. There are likely several million people in the U.S. alone who have Dysautonomia, and many millions more with other chronic illnesses, and hundreds of millions worldwide whose potential is being stolen from them by illness. We don't see it in those terms; we don't see what those millions have not done. But the losses are staggering. I don't say this to invite pity. I have no use for pity, and -despite ill health- my life is pretty wonderful. My situation is better overall than it is for most people with severe illnesses; better, even than for many healthier people. Instead, I say this to bring awareness of the often intangible costs of chronic illness. This may make you sad to read. That's ok, and understandable. I'm trying to give an accurate picture of how much it sucks to have one's potential stolen by illness not to make you sad just to be sad, but so that you will be inspired to help change things for the better. What we don't see can speak volumes. What is NOT there  -what has NOT been done- should scream at us. What can be done about this? The first step is awareness: recognize how much illness takes from individuals and society. Understand that there are likely many people in your life whose productivity is compromised by varying degrees of illness. And you may have no idea at all that they are suffering to any extent. Next, support scientific medical research. This may take the form of raising money for research, but not everyone can contribute financially. What is essential and within reach of us all is working to ensure that our society takes scientific research seriously. That's the only way out. We need to understand these illnesses so we can treat and cure them. We can all work toward fostering a culture of scientific literacy and appreciation. We can all take small steps toward this goal. Challenge irrational ideas when you come across them. Demand evidence for claims about science and medicine -about anything, really. Do not forget the famous phrase: “Extraordinary claims require extraordinary evidence.” This is the easy stuff; you don't have to give much time or any money at all to do these things. Join me in creating a culture that respects and utilizes the scientific method. A culture that expects its leaders and institutions to fully fund medical research programs. A culture that will not be satisfied with the status quo that allows millions of people around the world to waste away from illnesses that could be cured if they were studied properly. I need your help with this, my dear friends. I can't feed and bathe myself; I'm not likely to be able to guide our culture towards scientific literacy and appreciation on my own.

[numberwitch]

Trying Florinef? Start Low, Go Slow

If you are considering trying Florinef, or have tried it already and not responded well to it, this is for you.

I often hear that someone who desperately needs to increase their blood volume has tried Florinef (fludrocortisone acetate) but been unable to stay on it because of intolerable side effects. I think in many cases, the intolerable side effects are the result of how the medication is prescribed and taken -and not of the medication itself. Florinef has been helpful to so many people who have Dysautonomia and has the potential to be helpful to many more, so it makes me sad and frustrated that anyone would be denied the benefit of this medication because of the way it is administered. Certainly, in some cases, it is the Florinef itself to which a patient reacts badly, and this will not be relevant to people for whom that is the case. But, before deciding that Florinef doesn't work for you, I urge you to consider whether the way it was prescribed for you might be the cause of the side effects. If so, taking it in a different way may alleviate the side effects and allow you to get the full benefit of Florinef. Our healthcare system has been set up to deal with acute, emergency situations, not chronic conditions. In acute, emergency situations, the goal is to administer the relevant medication as quickly as possible to save lives. While that mindset is understandable in that context, it is less useful in the context of chronic illness. Yet that mindset carries over from acute care to chronic care and results in health care providers wanting to get a patient on a therapeutic dose of a medication as quickly as possible. While the goal of lessening a patient's suffering quickly is laudable, having patients start some medications at doses that are too high, and increasing doses too quickly, can end up causing the patient more suffering. When first taking Florinef, many people experience these side effects: pressure headaches, edema (swelling), and insomnia. In my non-professional opinion, these side effects could be minimized or completely avoided if doctors were to instruct patients to start at lower doses. The standard dose of Florinef prescribed for people with hypotenstion (low blood pressure) due to hypovolemia (low blood volume) is .2mg (or 200mcg) per day. Most doctors recommend starting with half that dose or all of it at once. I think this is a mistake. I think those doses are too high for most Dysautonomia patients to tolerate at first. Many of us are sensitive to medications, or respond to medications in unexpected ways. Knowing from my own experience with medications that I am more sensitive to some medications than my doctors expect, I decided to take a much lower dose, and to increase the dose slowly, taking wisdom from the nursing adage “start low, go slow”. (I had my doctor's approval in doing this, though he did not think it was necessary. He knows me well enough now to know that -for me, at least- it is.) Instead of taking .1mg for a few days, then .2mg as my doctor prescribed, I started with 1/8 of the full dose, .025mg, and increased by .025mg every week. It took 7 weeks to reach the prescribed therapeutic dose of .2mg per day, but I had almost no side effects during this period, and have had none in the years since I worked up to .2mg per day. The only time I experienced even the mildest side effects was when I thought I would try increasing my dose from .075mg (3/4 of a tablet) to .1mg (a full tablet) after only 3 days instead of my usual 7. That's when I got a taste of the dreaded pressure headache I'd heard so much about in relation to Florinef. It was not fun. It lasted 2-3 days, then subsided. When I returned to my schedule of increasing only every 7 days, I had no more pressure headaches. I never had any trouble with insomnia (beyond my already-present sleep problems), and the only weight I gained was about 2 pounds of water weight -but not edema- over the first month or so after reaching the full dose of .2 mg. Since gaining water weight in the form of increased blood volume is what we want from Florinef, I don't consider that a side effect. I also had some problems taking the whole dose at once. Florinef is usually prescribed to be taken, in full, in the mornings. Doing so caused my blood pressure to get a little too high during the day, and go lower at night than it had before starting the Florinef. Instead of taking .2mg in the morning, I take .1mg in the morning, and the other .1mg in the evening -about 12 hours apart. I now have a steady amount of Florinef in my system, which helps my blood pressure stay as stable as it can. I started to notice positive effects even at .025mg, and the positive effects kept increasing as the dose increased. Florinef (and the sodium and fluid loading that are necessary for Florinef to work) is what allowed me to lift my head without risking syncope. Then, it allowed me to sit without passing out, and eventually, to get out of bed. I'm still couch bound and homebound and quite ill, but Florinef has helped me more than any other medication I've tried for Dysautonomia. Given how much it has helped me, I want to make sure that others who might benefit from Florinef know that at least some of the side effects can be lessened or prevented by starting with a low dose and increasing the dose slowly. Most doctors won't even consider this when prescribing Florinef. If you are thinking about trying Florinef, or any medication, and are concerned about side effects, remember “start low, go slow”. Talk with your doctor about starting with a lower dose to make sure that it is an acceptable thing to try in your situation. Don't be surprised if your doctor says it is unnecessary. Explain that you'd like to try it anyway and just want to know if it is harmful. (Always check with your doctor or pharmacist about making changes to your medication regimen.) It will take longer to reach the prescribed dose and see the full benefits of the medication, but if starting low and going slow means you can stay on the medication so you CAN experience the benefits, it's worth it. For more patient experiences with Flornef, please check out these excellent pieces by sister Dysautonomiacs: http://bobisdysautonomia.blogspot.com.au/2013/09/florinef-i-think-i-love-you http://potsgrrl.blogspot.com/2011/08/florinef-oh-florinef-how-i-love-thee.html Let me stress that none of this is meant to replace proper medical advice. Discuss all medication-related concerns with your healthcare provider(s).

[numberwitch]

Empathy is only the beginning

If empathy doesn't become compassionate action, it becomes pity. And that makes everyone -pitiers and pitied- feel worse. Don't pity. Help.

[numberwitch]

I could be healthy, wealthy, and surrounded by friends and still be happy. I'm willing to prove it. Illness, (illness induced) relative poverty, and social isolation were not necessary for me to “build my character”.

[numberwitch]

Too young, too pretty...Still sick.

If those of us with chronic and terminal illnesses had a dollar for every time we've had conversations like this, we might be able to afford our medical bills and pay for research to find cures. Stranger: “You're too young to be sick.” Me: “I agree” Stranger: “You're too pretty to be sick.” Me: “I agree, and thank you.” How odd that our perfect agreement on the subject has not improved my health one bit. Perhaps age and appearance have less to do with health than is often assumed.

[numberwitch]

Gratitude and Anger: Thanks, Gastroparesis!

I'm angry, and I'm grateful. It's confusing. My stomach has nearly shut down (Gastroparesis: a complication of Dysautonomia, Ehlers Danlos Syndrome, neuromuscular disease, suspected channelopathy, and mitochondrial disease -one or any combo of them). I can only eat broth and saltine crackers now. I'm weak, hungry, shaking, chilled, losing too much weight. And I'm supposed to be grateful? Grateful that my stomach hasn't completely shut down? Grateful that I can get at least a few hundred calories per day? Seriously? The terms “feeding tube”, “gastric pacer”, and “I.V. nutrition” get bandied about, and I'm supposed to have gratitude that I haven't had to use any of those extreme measures yet? But I am grateful. So very grateful. I've seen how much worse this can get. I know how much those with severe Gastroparesis would give to be able to take just one bite again -even of a bland saltine cracker. I'm grateful that I can eat even this small amount now, because I might not recover and ever be able to eat more. I might get worse and not be able eat at all. I may recover somewhat, though my diet can never return to normal. I've recovered from flares of Gastroparesis before...but they've never lasted this long, or been this bad. So I'm grateful. But I'm angry that I have to be grateful for such crappy health. I'm angry that I can't take eating for granted. It's EATING. Hard to get more basic than that. Everyone should be able to take eating for granted, to a reasonable point. I'm angry that a person can be deprived of food through illness or poverty. I'm angry that anyone has to be content with substandard nutrition. I'm angry that I have to be content with crackers and broth. That THAT is my source of gratitude. I'm grateful and I'm angry. Contradictory emotions perhaps, but they are becoming quite familiar with each other -and I with them.

[numberwitch]

When I was healthier -many, many years ago- healthy enough to still ignore any signs of illness, I used to rate my fatigue on a 1 to 10 scale. One being energetic, ten being exhausted. I used the term “exhausted” hyperbolically, like most people do. We know it’s hyperbole, but it gets the point…

[upsanddowns97-deactivated202301]

This is so accurate and relatable, multiple hugs

[numberwitch]

Thank you! Hugs to you, and to anyone else who can relate :)

[numberwitch]

"At least it's not cancer"

Saying “at least it’s not cancer” to someone with a chronic illness like Dysautonomia, Ehlers Danlos Syndrome, Mitochondrial Disease, Mastocytosis, Gastroparesis, Fibromyalgia, or CFS/ME is like telling someone who fell off of a 10 story building that they should be happy they didn’t fall off of an 11 story building.

Need more reasons not to say something like that?

1) empathy statements generally don’t start with “at least it’s not…” 2) assuming the person with the chronic illness lacks the capacity to put their own situation in perspective is insulting and usually way off the mark. Struggling just to survive everyday has an uncanny way of getting people to broaden their perspectives. 3) a person only says “at least it’s not…” to make themselves feel better -not to comfort the person with the chronic illness. It lets them minimize the situation so they don’t have to feel so bad about it. Which only makes the person who is ill feel worse. 4) you don’t know it isn’t cancer. Cancer can cause Dysautonomia, and is correlated with other chronic illnesses in ways we don’t fully understand yet. 5) some forms of Ehlers Danlos Syndrome, Mitochondrial Disease, Gastroparesis, Mastocytosis, and other chronic illnesses can kill more ruthlessly than cancer.

Instead of making an “at least it’s not…” statement, listen, offer compassion and support. You don’t have to have a response; the person with the chronic illness isn’t expecting you to fix what medical science has yet to understand. They’d just like a little validation, a little acknowledgement that their illness -severe or mild- matters. That THEY matter enough to you for you to spend a little of your time trying to understand.

[nonbinaries-on-ice]

ok real talk here. when i first got diagnosed with fibromyalgia, i wished it was cancer. i wished it was something “real.” i wished it was something i wouldn’t have to suffer through this for the rest of my life. i wished it was something that would kill me so i wouldn’t have to suffer for 50 or more years like this. suffering worse for a short period of timed seemed so much better than suffering on a lower level for decades. sometimes i still feel that way. when i’m going through a flare and i can barely even get out of bed but i have to because people don’t understand fibro at all and i can’t just miss my whole life because of it, i wish i had something that people understood. that people threw money at to find a cure. that would let me not have to try to act like everything’s fine when it’s not. that would kill me to make it stop. and that’s not healthy and it’s not right to think that way, i know. i know that cancer isn’t a desirable thing, but… fibro is just as undesirable. and i know that saying what i just said probably pisses a lot of people off, but it pisses me off too because i know just how wrong it is to think that way, that cancer ruins people’s lives. but when you already feel like your life is ruined… sometimes you at least want an out… thankfully i don’t think like that a lot anymore, and all my mental health problems are being taken care of pretty well now, and my fibro is sort of taken care of, but still. when i hear “at least it’s not cancer” or “at least it doesn’t do real damage to your body” or “at least it won’t kill you” all i think of is “maybe it has, just you can’t see it.”

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[numberwitch]

You aren't wrong for feeling that way. The situation is what's wrong. It sucks that you have reason to feel that way, but you DO have reason to feel that way. I think a lot of people with chronic illnesses have felt that way from time to time. It's understandable; wanting the illness that is crushing us to be one that others understand, take seriously, and are working to treat/cure is a completely reasonable thing to want. Don't be so hard on yourself; I think most people with chronic illnesses understand these sentiments at least to a certain degree. Most of us never say so, though, because we are afraid we'll be criticized for expressing our real thoughts. For not being "good" sick people who always have positive attitudes about our illnesses. So, good for you for being brave enough to be honest.

[numberwitch]

Exhaustion Without Hyperbole: Why I Don't Use the Term “Exhaustion” Lightly Anymore

When I was healthier -many, many years ago- healthy enough to still ignore any signs of illness, I used to rate my fatigue on a 1 to 10 scale. One being energetic, ten being exhausted. I used the term “exhausted” hyperbolically, like most people do. We know it's hyperbole, but it gets the point across. I didn't know that the scale doesn't stop at 10. I didn't know the scale was logarithmic. I didn't know how much deeper and scarier the scale can go. I probably still don't. But my scale has changed. Now, it's a 1 to 100 scale, with 1 being energetic and 100 being exhausted. Truly exhausted, this time. No hyperbole. 100 is it. When I talk about exhaustion at a 100 on the scale, I mean everything has stopped. That there is simply no more energy available for my body to function. There is one inevitable consequence to living, and it happens at 100. I never get below a 70 now. I used to call a 10 "exhausted", but now that term is reserved for a 90 or higher. 10 used to be “exhaustion”. Now 70 is just “tired”. I am often criticized for being too casual about my illness. For saying that I'm “tired” when a doctor or nurse or friend expects me to say “exhausted”. I think some people underestimate my fatigue because my language describing my fatigue has changed. But now that I've experienced what it is like to be nearly exhausted -of every resource needed for survival- I can't accurately say that I'm exhausted at 70 or 80 on the scale. Much like how someone who has lived through a famine would be unlikely to use the term “starving” lightly. I've been only a breath away from 100; I can't say I'm exhausted as long as I have the energy to say anything at all.