Acute Clinical MicroSleep and Other Atypical Anatomical Functions

basically this is a chronic response that your body does when it is in too much pain to preform its functions. it is often misdiagnosed as chronic fatigue syndrome or narcolepsy. this has been happening to me be teen every hour to 30 minutes. ill suddenly become exhausted and fall into REM for 2-3 minutes and wake up and be awake for an hour or so. this is great for when i don't feel well but its happening all night to. one of the interesting things about being an anomaly when it comes to the health of a 20 year old, is learning about atypical anatomical functions (its a mouth full, right?) like, when a non-EDS patient would dislocate their knee you would expect extreme pain and difficulty resetting the joint. however, since i have EDS, i have a mixed connected tissue disorder allowing me to pop my joints in and out (not that it doesn't hurt, it does but my body can't prevent it from happening) another example of strange bodily function is thinking about having Lupus. my immune system attacks its own body and cells unless i take a daily chemotherapy drug. i sometimes wonder why it is that most people who are diagnosed with a chronic illness usually have more then one. like for insistence, my friend Leah has ehlers-danlos syndrom, POTS, GERD, and MVP. while some of them are related, some are not so much. when i was first diagnosed with Lupus, i was also diagnosed with POTS (Postural Orthostatic Tachycardia Syndrom) and over the next year or so, quite a few others (diagnosis story was in the previous post) is it because our body's are made more susceptible once you have one illness? is it a flaw in anatomy when you are born? i wish there were a foundation for the study of Chronic conditions.

if my life were a novel this would be the summery:

My name is Allyson Marie Clare Sutphin, im 20 years old and live in an apartment with my boyfriend Matt and three cats (Lilly, and 2 of her kittens Goat, because he has a goatee and Erebos, named after a magic card. I plan to study Sociology and Philosophy with an angle in publication because i am a passionate writer, but Matt and i also want to have a family at some point. But i can’t start on school until my health is stable Growing up, i struggled with OCD and anxiety from a very young age. i started anti-anxiety medication when i was 7 and therapy when i was nearly 5. when i was 9 my mom (she was my best friend, biggest anxiety helper, and biggest inspiration) was diagnosed with breast cancer. in the summer of 2004 she wen’t into remission, but the following winter she relapsed and quickly became sicker and sicker. we moved from Cincinnati to Hudson Ohio in the middle of my 5th grade year to be near the cleavlend clinic (for my Mom) and to live near my grandparents (for all of us) about a year later, my moms Cancer had spread to her blood, her bone marrow and her lungs, so we moved her into hospice when she decided the treatments weren’t doing any good. a month later she passed away with a relaxed smile on her face. from here, things get a little shaky. my depression became unmanageable, so my dad sent me to a ‘wilderness program’ where i spent 3 month camping on the Appalachian trail. it was hard, it was beautiful, it was rewarding. it’s something i will never be able to do again, but im glad i did it. after that, i went to a residential treatment center that was formatted like a relaxed boarding school. i completed my freshmen and sophomore years here, high in the mountains of bonners ferry Idaho. i made a lot of friends here, a lot of which i still keep in contact with! while i was there, my father got remarried. while i was at the boarding school, i hd a specialized trauma therapist, who, upon listening to me labeled my father as physically and verbally abusive. so he had to go through classes and procedures before i was aloud to return home to him. while i was there i was diagnosed with AvPD, Bulimia, Major Depressive Disorder, and Multiple phobic disorder (no longer diagnostic criteria) i did go back home and finish my junior and senior year at Hudson high school, where i had my first of many suicide attempts and a lot of hospitalizations (i was diagnosed with my first chronic illness besides asthma, Epilepsy and MVP, POTS) i began to get sicker physically. i had always had epilepsy, scoliosis, asthma, and mitral valve prolapse, but coughing up blood and losing 30 lbs was not a symptom of these. nothing helpful was diagnosed except for rheumatoid arthritis and pyloric stenosis. At the end of my senior year, i had to regularly fight (physically and verbally) with my father to protect my brothers, and new step-sisters. when school finished and i graduated my Dad kicked me out and i lived on the streets of akron for almost 4 months ((i wont talk much about wheat happened in that time because thats where a lot of my PTSD comes from)) eventually i got stable in a place to live and met Matt, we moved in together. my life has really never been smooth or easy, but i wouldn’t change any of it because i think it really help form me to be who i am today. after i turned 19, i ended up in hospital for nearly a month and i was diagnosed with SLE (Systemic lupus erythematosus) a condition that would change the functionality and meaning of my life. i was later diagnosed with a few other debilitating conditions including EDS3, Vitamin D and Magnesium deficiencies, Gastroesophageal reflux disease (GERD), PTSD, and schizophrenia) i will keep believing my life is worth fighting for, for as long as i can. encouragement is always helpful.

a diagnosis can('t) define my life

As a lupus patient , i can't spend a lot of time in the sun because it causes my antinuclear antibodies to act up. Essentially, Lupus is a disease where your body becomes allergic to itself, causing chronic organ rejection and inflammation of my organs, skin, muscles, and arteries, and being in the sun makes the body think there is an intruder. if i spend 30 minutes to an hour in the sun i will end up spending a few days with stomach flu symptoms and respiratory decline. People consider Lupus an "invisible illness" because it is hard to tell if you have an autoimmune disease by looking at somebody. often times i will have a red rash that spreads across my nose and over my cheeks. it burns and itches like poison ivy. When i was a kid i loved spending time outside, there were specific tress in the woods behind my childhood home that i would sit and read books for hours. being inside made me feel trapped, it felt unnatural. now that summer is my immune systems enemy, i have to find peace elsewhere. I've hung fairy lights, pictures, posters, and a collage of photos in my bedroom. i have dark curtains over my window to block the light, but i open the window for fresh air. its fall, and there is mostly cloudy weather, so going outside is not a danger as much, but with the chill in the air my joints are swelling and my sinuses are pounding with pain. My boyfriend Matt has been pushing me to the library in my wheel chair to help me get a change of scenery. Having an illness certainly changed my life, but it hasn't made it worse. as i have written before, its hard to find peace when your happy place is unaccessible. learning to be a person of hope after a big change like becoming ill is difficult, but i think if i hold to my passions and values it will not be hard to remain the same person i was, just with different challenges.

im told illness and happiness are not mutually exclusive

i have been told this my whole life, thats about how long i have been sick with one thing or another. weather it was therapists trying to convince me to speak, doctors drugging me out of panic attacks with benzodiazepines or being slid in and out of MRIs and PET scans, people try to tell me i have an equal shot at being happy as anyone else. but what they didn't tell me, what they couldn't, was that when you are sick happiness means something different. i used to love walking, i walked everywhere. i would walk just for the sae of walking. it helped me think it made me a better writer. but now i can barley walk a block with out extreme pain or passing out from low blood pressure. it took me a long time to realize that you have to be happy because you are, not because you should be. i find that there are 2 main reactions when people find out about my illnesses: 1) they are convinced i should be utterly depressed or 2) they tell me i should be happy i'm not dead. before i was diagnosed with my first major illness, POTS (Postural Orthostatic Tachycardia syndrome) i WAS depressed. i was on 3 antidepressants 1 mood stabilizer and 1 antipsychotic to treat my debilitating depression. after my first diagnosis of POTS, they told me that it was not the main problem. next i was diagnosed with SLE (Systemic lupus erythematosus) and Rheumatoid Arthritis. it was around this time i started to do personal study's on philosophy, and landed an addiction to the topic of existential realism. my depression started to lift right before a new set of symptoms cropped up. i would space out with no memory of the lapsed time, next began the seizures, and i was diagnosed with Epilepsy. i began to read up on these illnesses and weather or not they could be related, and what home treatments and herbal medicine could be helpful. a few months passed in which time nothing eventful happened health wise, except for a scare when i dropped some weight. i wrote an article for the epilepsy foundation. and attended a Lupus support group a few times. it was during this time that really began to figure out what it meant to be happy. i can write from anywhere, a hospital bed, my bed, a park bench, and i found that thats what gave my life meaning. being able to share my experiences in life. a few weeks ago i saw my rheumatologist because i was having problems with my small joints subluxing and dislocating, i was diagnosed with EDS type 3 (Ehlers–Danlos syndrome) but this time the diagnosis didn't hit my mental health so hard. my rheumatologist and i talked about physical therapy and splints, and i got a wheel chair for mobility. even though i have multiple serious medical conditions, i honestly think i have never been happier. i am ready for anything.

being sick is a job in of itself

every day i have to do things to keep my body functioning. things that people who do not have to live with an illness, don't have to do. the reason this is so unfair is because people who are not sick, don't have to take all of these extra steps. but i do, and i dont have the energy for it. i have to take pills 4 ties a day, i do 4+ breathing treatments every day, i eat high fat, low carb, i wear braces and splints, i do physical therapy, there are so many things that i have to do that healthy people don't and they are the ones with all of the energy. i get so angry sometimes, like, i feel like i got cheated in life. when i think back there was really never a time that i had it easy. between mental and physical illness, the loss of my mom etc. its always been rough. i don't want to complain because i have a lot to be happy about, but im scared. this is my life and im losing it because im sick.