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crashtestsposts2026 State of the Body
I often don't have the energy to sit and discuss the progression, next steps, and current concerns of my health with people, even if those people are well-meaning, concerned, or wanting to help. Because of various factors & symptoms, it's also difficult to remember or keep track of who I spoke to about what developments & when.
I've also always considered myself someone who uses my own experiences as information, advocacy, and a catalyst for change. In that spirit, I've decided to set down some things to (fake) paper so I can do the digital equivalent of handing people this business card when they ask, "Hey Crash, what's wrong with you...?" no matter what the tone is behind that question.
If you're curious, you can read more about my disabilities, unexplained symptoms, and projected next steps for 2026 here. This is by no means exhaustive (I reserve the right to some privacy!) but I try to be transparent. I learned about disability, access, and intersectionality reading peoples' blogs online; I see no reason not to continue that free flow of information for others.
I definitely have:
We don't really know what's up with:
I've had migraines since I was young. These have varied in severity and frequency in my life. Sometimes, they're headaches I can work through. Other times, I'm vomiting and moaning on the floor of the bathroom and would likely seek urgent care or the E.R. in safer, less pandemicene times. In about 2019, the migraines started to become disabling more frequently than not--they interfered with my ability to work, to enjoy leisure activities, and to do daily functioning like eating, showering, and doing chores. I'm on medication to prevent these & to treat them when they show up, and to treat some side effects. It is partially effective, and I still have a few migraine attacks a month.
In late 2023 I was diagnosed with Hypermobility spectrum disorder (HSD) by a rheumatologist, someone who works with auto-immune diseases. HSD is a disorder of the connective tissue and related to hypermobile Ehlers-Danlos syndrome. HSD is, as stated, a spectrum, but in my case it results in constant joint subluxations & dislocations, especially in my ribs, hips, pelvis, and jaw; lots of inflammation; digestion issues; joint pain; limited standing & walking tolerance; and more fun stuff!
To manage my HSD, I use mobility aids (usually a rollator/rolling walker, but sometimes a cane or a wheelchair); wear strong, supportive shoes or boots for my feet and ankles; wear a steel-boned corset to hold my ribs & spine in place 24/7; and sometimes manage joint positions with KT tape or other braces. I also use a lot of cushions and pillows wherever I am sitting or lying, to help position my joints in the least stressful positions.
As far as we're aware, my HSD is what causes most of my pain. To manage pain, I use those aids & braces, positioning strategies, and lots of medication. I take the maximum amount of over-the-counter pain medication I can take safely in a day on a regular schedule. I also have a medical marijuana prescription in the state of Minnesota and am a regular user of both inhalant modalities and topical salves of cannabis.
I've also had a pretty bad gastroesophageal reflux disease (GERD) flare this fall. In other words, my stomach acid reflux is causing me lots of trouble. Sometimes that's nausea; sometimes, burning and pain that effects surrounding body structures, like my ribs and shoulders; sometimes symptoms that are so bad they keep me from sleeping or eating. This is probably related to HSD problems in muscle function, but my next GP appointment isn't for several weeks, so my family and I have been trying to manage this at home with over the counter meds and dietary changes. Even so, GERD flares have me on a partially liquid diet most days.
I've been dealing with escalating, chronic, constant fatigue since I was a teenager. By 2019, I was expressing to coworkers that all I did in a day was work, eat dinner, sleep, wake up, and go to work again. Not because of depression, but because my body was so exhausted that it was the only way for me to get through shifts at the warehouse I was working at. Doing certain activities (recently, almost any activity) takes a lot of energy out of me, and it takes hours to days to recover.
This fatigue has been escalating since then, with a sharper increase since my COVID-19 infection in December of 2022. Right now, I average two to four hours at a time upright, awake, and out of bed. Making it more than four hours feels like a notable achievement. Leaving the house shortens this window considerably, and I am almost always so exhausted that I will come back and sleep for twice the time I was awake immediately upon my return home.
Some of the ways the fatigue manifests makes my doctors think I have an autonomic nervous system dysfunction, like POTS (postural orthostatic tachycardia syndrome). However, my autonomic nervous system testing came back normal, and the specialist said out loud at the follow-up test that "people like [me]" were likely experiencing complications from anxiety. He didn't explain how that resulted in debilitating fatigue, but made it clear he "[didn't] expect to find anything wrong with [me]" and declined to run further tests. He is one of only two autonomic nervous system experts in MN, so I am unlikely to find further effective testing in this area.
Some of the specifics, including tiredness that is out of proportion to the activity I've done and delayed in onset, suggests it may be myalgic encephalomyelitis, M.E.; historically called chronic fatigue syndrome, or CFS. This is the illness my non-internet best friend (NIBF) has. NIBF has been bed-bound for over a year and has not left ems house independently in that time. My fatigue has not kept me bed bound (yet) but I am mostly house-bound as of fall 2025. I see my doctor that I trust at the end of January and will address this with her then.
I have a scattering of minor symptoms that are not fully ascribed to my known conditions, like severe itching on my feet and sometimes hands; some skin issues that can appear and flare occasionally; and some other annoyances.
This one is a bit quicker because people generally understand most of my stuff here a bit better.
I have an anxiety disorder. This has been called a general anxiety disorder and sometimes has been specified more. In the end, especially since I am not currently pursuing treatment, it doesn't really matter to me.
I have suicidal major depression. The suicidality waxes and wanes but is always present.
I've also been specifically diagnosed with post-traumatic stress disorder (PTSD). The U.S. doesn't distinguish between PTSD and complex PTSD in terms of diagnosis, but clinicians have told me I specifically exhibit symptoms and patterns of c-PTSD, which means I was exposed to traumas repeatedly over time as opposed to in an isolated incident like an accident or attack.
I've voluntarily admitted myself to inpatient psychiatric treatment twice--once in 2013 and once in 2016. I've considered inpatient since, but since I can almost promise they will not allow me to keep a respirator-quality mask on, which is the MINIMUM I would need for safety against airborne viruses, I cannot go. I did do intensive outpatient in 2023 instead, where clinicians told me they would not wear respirators upon request and frequently had no answers to my questions and no solutions to the basic-needs problems causing my depression, like poverty, food scarcity, and lack of medical care for my disabled housemates. Therapists also have told me they have nothing more to offer me at this point in time.
Right now, my mental health, including my suicidality, is managed at home with the help of regular medications (including medical cannabis) prescribed by a psychiatrist and strategies employed by my family. I've written plans for crises while feeling well for moments when I am unwell. I don't accept prescriptions that are dangerous to impulsively overdose on unless I can keep them in a two-lock box where I need my partner or another caregiver to co-open the box with me.
In the late spring/early summer of 2024 I had several days of strange neuro-psych symptoms--visual hallucinations, paranoia, increased anxiety, inability to process time properly, impaired short term memory.
These symptoms culminated in a couple of more acute episodes, which my neurologist has called "spells of altered cognition." Symptoms have slowly abated over time but can flare up under stress. Sometimes I still have hallucinations and some paranoia. There have been no acute events since.
I've done an MRI and an EEG. They have all come back normal, with no known cause for the spells.
Keeping my stress and anxiety levels down and not working through the fatigue I'm experiencing, whether physical or cognitive, seems to be the best solution.
There is also a fair amount of cognitive impairment that lines up with the physical unexplained fatigue above to suggest ME/CFS. I have aphasia, a symptom that has worsened over time; light sensitivity; and tiredness that impairs my ability to think, speak, solve problems, recall memories and thoughts, and participate in normal activities. I've described to loved ones as feeling like I'm constantly on the last hour of 24+ hours awake, even when I've just gotten out of bed. Again, this suspicion of ME/CFS is the first thing I'm bringing to my doctor at my next appointment at the end of January. Until then (and probably after that), extreme rest and pacing seems to be the solution.
Q: Is it MS (muscular sclerosis) / Lyme's disease / lupus / arthritis...?
A: No. My main pain, fatigue, and movement problems are caused by my hypermobility spectrum disorder. See above under "Physical issues > stuff we know." Right now my tests show chronic inflammation but not markers for any specific infection or autoimmune disease. All those disorders would show up on tests my medical team has run.
Have you been tested for...?
If I have, it has come back negative/not a problem! I've had a LOT of blood tests run, and I've been assured they're all within normal ranges, especially the ones run in the next few years. If I have not, my doctors and I and NIBF have not thought of the condition in relation to my symptoms.
If you really think I should get tested for something, DM me somewhere! I'll probably bring it up to whatever doctor is relevant the next time I see one.
Q: When will you get better?
Short answer: I won't.
Longer answer: I may find treatment options that improve some of my symptoms, like the severity of my fatigue and pain. But HSD is not a curable condition, so I will always be dealing with pain, tiredness, joint instability, and other systemic symptoms of that condition. It can also be degenerative, meaning things in my body physically degrade and get worse over time due to injuries caused by my HSD.
Q: When will you go back to normal / go back to work?
Probably never. My body and stamina has degenerated and my symptoms have escalated to the point where trying to do regular scheduled work without extreme flexibility caused me a lot of pain and often triggered migraines even before my fatigue became severe.
As always, if you have questions: comment here, message me wherever you find me, or send archaic messenger birds!
I often don't have the energy to sit and discuss the progression, next steps, and current concerns of my health with people, even if those people are well-meaning, concerned, or wanting to help. Because of various factors & symptoms, it's also difficult to remember or keep track of who I spoke to about what developments & when.
I've also always considered myself someone who uses my own experiences as information, advocacy, and a catalyst for change. In that spirit, I've decided to set down some things to (fake) paper so I can do the digital equivalent of handing people this business card when they ask, "Hey Crash, what's wrong with you...?" no matter what the tone is behind that question.
If you're curious, you can read more about my disabilities, unexplained symptoms, and projected next steps for 2026 here. This is by no means exhaustive (I reserve the right to some privacy!) but I try to be transparent. I learned about disability, access, and intersectionality reading peoples' blogs online; I see no reason not to continue that free flow of information for others.
The Short Version
I definitely have:
- migraines
- hypermobility spectrum disorder
- gastro-esophageal reflux disorder (GERD)
- anxiety
- suicidal depression
- c-PTSD
We don't really know what's up with:
- extreme fatigue
- some physical stuff that may or may not be HSD bothering my nerves
- "spells of altered cognition"
- ongoing cognitive impairment, possibly tied to the fatigue
Physical Health Stuff
Stuff We Know for Sure
I've had migraines since I was young. These have varied in severity and frequency in my life. Sometimes, they're headaches I can work through. Other times, I'm vomiting and moaning on the floor of the bathroom and would likely seek urgent care or the E.R. in safer, less pandemicene times. In about 2019, the migraines started to become disabling more frequently than not--they interfered with my ability to work, to enjoy leisure activities, and to do daily functioning like eating, showering, and doing chores. I'm on medication to prevent these & to treat them when they show up, and to treat some side effects. It is partially effective, and I still have a few migraine attacks a month.
In late 2023 I was diagnosed with Hypermobility spectrum disorder (HSD) by a rheumatologist, someone who works with auto-immune diseases. HSD is a disorder of the connective tissue and related to hypermobile Ehlers-Danlos syndrome. HSD is, as stated, a spectrum, but in my case it results in constant joint subluxations & dislocations, especially in my ribs, hips, pelvis, and jaw; lots of inflammation; digestion issues; joint pain; limited standing & walking tolerance; and more fun stuff!
To manage my HSD, I use mobility aids (usually a rollator/rolling walker, but sometimes a cane or a wheelchair); wear strong, supportive shoes or boots for my feet and ankles; wear a steel-boned corset to hold my ribs & spine in place 24/7; and sometimes manage joint positions with KT tape or other braces. I also use a lot of cushions and pillows wherever I am sitting or lying, to help position my joints in the least stressful positions.
As far as we're aware, my HSD is what causes most of my pain. To manage pain, I use those aids & braces, positioning strategies, and lots of medication. I take the maximum amount of over-the-counter pain medication I can take safely in a day on a regular schedule. I also have a medical marijuana prescription in the state of Minnesota and am a regular user of both inhalant modalities and topical salves of cannabis.
I've also had a pretty bad gastroesophageal reflux disease (GERD) flare this fall. In other words, my stomach acid reflux is causing me lots of trouble. Sometimes that's nausea; sometimes, burning and pain that effects surrounding body structures, like my ribs and shoulders; sometimes symptoms that are so bad they keep me from sleeping or eating. This is probably related to HSD problems in muscle function, but my next GP appointment isn't for several weeks, so my family and I have been trying to manage this at home with over the counter meds and dietary changes. Even so, GERD flares have me on a partially liquid diet most days.
Stuff We're Unsure About
I've been dealing with escalating, chronic, constant fatigue since I was a teenager. By 2019, I was expressing to coworkers that all I did in a day was work, eat dinner, sleep, wake up, and go to work again. Not because of depression, but because my body was so exhausted that it was the only way for me to get through shifts at the warehouse I was working at. Doing certain activities (recently, almost any activity) takes a lot of energy out of me, and it takes hours to days to recover.
This fatigue has been escalating since then, with a sharper increase since my COVID-19 infection in December of 2022. Right now, I average two to four hours at a time upright, awake, and out of bed. Making it more than four hours feels like a notable achievement. Leaving the house shortens this window considerably, and I am almost always so exhausted that I will come back and sleep for twice the time I was awake immediately upon my return home.
Some of the ways the fatigue manifests makes my doctors think I have an autonomic nervous system dysfunction, like POTS (postural orthostatic tachycardia syndrome). However, my autonomic nervous system testing came back normal, and the specialist said out loud at the follow-up test that "people like [me]" were likely experiencing complications from anxiety. He didn't explain how that resulted in debilitating fatigue, but made it clear he "[didn't] expect to find anything wrong with [me]" and declined to run further tests. He is one of only two autonomic nervous system experts in MN, so I am unlikely to find further effective testing in this area.
Some of the specifics, including tiredness that is out of proportion to the activity I've done and delayed in onset, suggests it may be myalgic encephalomyelitis, M.E.; historically called chronic fatigue syndrome, or CFS. This is the illness my non-internet best friend (NIBF) has. NIBF has been bed-bound for over a year and has not left ems house independently in that time. My fatigue has not kept me bed bound (yet) but I am mostly house-bound as of fall 2025. I see my doctor that I trust at the end of January and will address this with her then.
I have a scattering of minor symptoms that are not fully ascribed to my known conditions, like severe itching on my feet and sometimes hands; some skin issues that can appear and flare occasionally; and some other annoyances.
Mental & Neurological Stuff
Stuff We Know
This one is a bit quicker because people generally understand most of my stuff here a bit better.
I have an anxiety disorder. This has been called a general anxiety disorder and sometimes has been specified more. In the end, especially since I am not currently pursuing treatment, it doesn't really matter to me.
I have suicidal major depression. The suicidality waxes and wanes but is always present.
I've also been specifically diagnosed with post-traumatic stress disorder (PTSD). The U.S. doesn't distinguish between PTSD and complex PTSD in terms of diagnosis, but clinicians have told me I specifically exhibit symptoms and patterns of c-PTSD, which means I was exposed to traumas repeatedly over time as opposed to in an isolated incident like an accident or attack.
I've voluntarily admitted myself to inpatient psychiatric treatment twice--once in 2013 and once in 2016. I've considered inpatient since, but since I can almost promise they will not allow me to keep a respirator-quality mask on, which is the MINIMUM I would need for safety against airborne viruses, I cannot go. I did do intensive outpatient in 2023 instead, where clinicians told me they would not wear respirators upon request and frequently had no answers to my questions and no solutions to the basic-needs problems causing my depression, like poverty, food scarcity, and lack of medical care for my disabled housemates. Therapists also have told me they have nothing more to offer me at this point in time.
Right now, my mental health, including my suicidality, is managed at home with the help of regular medications (including medical cannabis) prescribed by a psychiatrist and strategies employed by my family. I've written plans for crises while feeling well for moments when I am unwell. I don't accept prescriptions that are dangerous to impulsively overdose on unless I can keep them in a two-lock box where I need my partner or another caregiver to co-open the box with me.
Stuff We Don't Know
In the late spring/early summer of 2024 I had several days of strange neuro-psych symptoms--visual hallucinations, paranoia, increased anxiety, inability to process time properly, impaired short term memory.
These symptoms culminated in a couple of more acute episodes, which my neurologist has called "spells of altered cognition." Symptoms have slowly abated over time but can flare up under stress. Sometimes I still have hallucinations and some paranoia. There have been no acute events since.
I've done an MRI and an EEG. They have all come back normal, with no known cause for the spells.
Keeping my stress and anxiety levels down and not working through the fatigue I'm experiencing, whether physical or cognitive, seems to be the best solution.
There is also a fair amount of cognitive impairment that lines up with the physical unexplained fatigue above to suggest ME/CFS. I have aphasia, a symptom that has worsened over time; light sensitivity; and tiredness that impairs my ability to think, speak, solve problems, recall memories and thoughts, and participate in normal activities. I've described to loved ones as feeling like I'm constantly on the last hour of 24+ hours awake, even when I've just gotten out of bed. Again, this suspicion of ME/CFS is the first thing I'm bringing to my doctor at my next appointment at the end of January. Until then (and probably after that), extreme rest and pacing seems to be the solution.
Frequently Asked Questions
Q: Is it MS (muscular sclerosis) / Lyme's disease / lupus / arthritis...?
A: No. My main pain, fatigue, and movement problems are caused by my hypermobility spectrum disorder. See above under "Physical issues > stuff we know." Right now my tests show chronic inflammation but not markers for any specific infection or autoimmune disease. All those disorders would show up on tests my medical team has run.
Have you been tested for...?
If I have, it has come back negative/not a problem! I've had a LOT of blood tests run, and I've been assured they're all within normal ranges, especially the ones run in the next few years. If I have not, my doctors and I and NIBF have not thought of the condition in relation to my symptoms.
If you really think I should get tested for something, DM me somewhere! I'll probably bring it up to whatever doctor is relevant the next time I see one.
Q: When will you get better?
Short answer: I won't.
Longer answer: I may find treatment options that improve some of my symptoms, like the severity of my fatigue and pain. But HSD is not a curable condition, so I will always be dealing with pain, tiredness, joint instability, and other systemic symptoms of that condition. It can also be degenerative, meaning things in my body physically degrade and get worse over time due to injuries caused by my HSD.
Q: When will you go back to normal / go back to work?
Probably never. My body and stamina has degenerated and my symptoms have escalated to the point where trying to do regular scheduled work without extreme flexibility caused me a lot of pain and often triggered migraines even before my fatigue became severe.
As always, if you have questions: comment here, message me wherever you find me, or send archaic messenger birds!
