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Hey Pandas! What Medical Condition Do You Have And How Does It Impact Your Life? (Closed)
What medical condition do you have? How does it impact your life (positivity or negatively?) how do you live with it? How do you cope with it?
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I have a couple. Most prominent is Ichthyosis Vulgaris. It's gotten a bit better in my adult years.
Some commercials and shows/movies show people just coming out of the shower, dry off, get dressed and go. Anyone with this skin disorder is in disbelief at this routine. We have to blot dry off, or not even dry off yet, and then slather on creams or lotions.
Baths are not tranquil, relaxing soaks. Baths are taken when I feel like it's time for a soak to loosen the layers of dead, built up skin with a pumice stone, foot file, loofa, anything that works.
To get my feet soft-ish, I need a foot razor, that cheese grater type of file and a foot file. It takes an hour to do each foot.
My face flakes around my nose and eyebrows. Some kids at school created a rumor I did drugs or something. I didn't get why until I saw a movie with a coke sniffing reference. My facials can be intense. I do sometimes use a sugar scrub. Those apricot scrubs do nothing but make my face flakier and bumpy.
I itch and scratch more than I realize, I'm sure. I never feel comfortable in my skin, literally.
When it's been humid out and hot, I get really itchy and my skin bunches up in little rolls as I scratch. I can't help it.
The sun on a dry hot day feels like little pin pricks all over, like I can feel all those ions emitted from the sun shooting into me.
I burn easily, even with a high spf. Tanning looks weird. You can make out all the scales on my legs. It looks blotchy and dirty.
Going to the hair salon is a real treat. Apparently I should try tea tree products.
I'm currently trying to find a hair stylist who's aware and experienced with clients with skin disorders, because none, so far, has really understood that hair care is different than those with normal skin. Skin disorders affect how the hair grows and the condition. The skin on the scalp tends to be the worse and hardest to treat. You can't just slather lotion on your scalp with hair in the way. If I cut it all off, trust me, I would look like Danny DeVito. I think I do okay. I do have to shampoo my hair a bit more frequently. I used to have weekly hair washes but that didn't do anything but make my hair greasy and scalp flaky and oily. Washing with just conditioner.... where do I start with that. Conditioner doesn't rid your head of oils. It adds to it. Dry shampoo.... on very scaly, flaky scalp... not going there. I've tried anti-dandruff shampoos. Once you stop using it the problem is way worse and I was still picking pieces of skin off my scalp.
Moving onto work. There are jobs I'll never be able to do due to skin irritants and soap. Hand sanitizers are hell and for some reason, some places I went to during the pandemic made me take off my non-latex gloves to put their hand sanitizers on my skin and wouldn't allow me to just sanitize my gloves. I told them I cannot do that and if there was place I can just wash my hands with soap and water. Some places had terrible quality hand sanitizers that made me break out in painful, itchy hives right away, and smelled to high heaven. (ok, ok rant over)
Anyways, my province doesn't recognize skin disorders as part of the disabilities rights, so I can basically be fired if anyone has an issue with what my skin looks like or if I can't do a task. The province next over does. No fair.
I have a latex allergy that causes inflammation in my hands.
Ver dry, cold environments make my hands crack and bleed.
I have hyperlinear lines that make my hands look much older than I am, and it's been that way since birth.
PTSD. It is like living under a cold wet and heavy blanket. Being strapped to a chair but there’s an open door. It’s my demon. A quote I like to think about is from doctor strange is “you can’t beat your demons. Only learn to live above them.”
As somebody with PTSD it really sucks because most people still have the misconception of it's only something people in the military get. Or the really annoying oh well just let go of the past and it'll be all better.
PCOS (polycystic ovarian syndrome). It’s a poorly-named condition that was named for the ovarian cysts it produces, but really has a deeper metabolic cause, via insulin resistance. It can cause weight gain, acne, thinning hair, infertility, irregular periods and depression/anxiety. Left untreated, it can lead to diabetes and certain cancers. Before I was diagnosed, it led to me gaining over 100 lbs, having horrendously long and heavy periods and losing years of my life to depression. I’ve since had a gastric bypass and a hysterectomy and take antidepressants, so I’m managing much better and trying to make up for lost time, living my best life in my 50s!
PCOS absolutely sucks, and does such bad things for your self-esteem and mental health. Very glad to hear things are getting better for you!
Polymorphic Light Eruption. Basically I am allergic to the sun. Every spring , summer or holiday to a hot destination, my skin breaks out into a really painful rash that is agonising when pressure is applied. I can’t wear certain clothes, stand up, sit or lie down without being in pain. I can take steroids when it’s really bad but the main ‘treatment’ is exposure so it’s usually not as bad towards the end of the summer. It completely disappears in winter but when spring hits, we start the whole cycle again. Joy!
Damn, you can't do direct sunlight, and I can't do cold temps .... what a world!
Spherocytosis. It is an inherited disease that effects the red blood cells. First a short bio lesson… Normally red blood cells are bi-concave disc shaped, from a functioning prospective this has a more effective surface area to volume ratio. Red blood cells have a life expectancy of 3 month and as they approach the end of the third month they lose the bi-concave shape and become spherical. When they become spherical the spleen filters them out of the circulatory system. I have spherocytosis: sphero = round cytosis = cells. When I was 9 I had an anemic event, my hemoglobin dropped to 5.6. The following month, after my body recovered from that event, my spleen was removed. This did not “cure” my genetic disease, but it stopped the excessive removal of my red blood cells. Technically, my round red blood cells are less efficient (remember the my mentioning the surface area to volume ratio). Not having a spleen makes me more vulnerable to some infections.
Thank you Gigi. Truth be told, I don't feel bad, I might have a stamina issue, but I try not to let it slow me down too much. I guess my motto is Living My Best Life (consider the hand I was dealt).
I have a condition known as cold urticaria. It is basically being allergic to the cold (for me, anything under 50F or 10C). I get a skin reaction of intense pain that can bring me to my knees! If prolonged exposure (over a few minutes) I have broken out in hives and they itch like something fierce! -- No ice cubes for me thanks!
So interesting! I have a condition called MCAS, basically speaking I’m allergic to everything. I have one food it is safe to eat, and it’s actually a highly specialized feeding tube formula
Fibromyalgia, fatigue, fibro fog, sleeping disorders, depression.
It’s hard for people to believe/understand the diffuse pains I feel as they see nothing physically wrong with me. No matter how I try to explain them, there’s always some level of disbelief and lack of empathy.
I’m always tired - no matter how much I rest/sleep, I’m never energetic, I never feel like exercising nor am I enthusiastic about doing anything that requires a lot of physical work. Nevertheless, I sometimes I do, even if it requires a lot of effort. But I always get some judgment, criticism and advice on how to change my “attitude“, even from family members and close friends who know darn well about my problems.
My fatigue is due to my not having a restorative sleeping and being constantly struggling with pain, which exhaust me. It’s not that difficult to understand, but people usually don’t.
My short term memory sucks - I don’t sleep well and I’m medicated with antidepressants. Do I need to say more?
And no, Fibromyalgia is NOT psychosomatic NOR autoimmune, but still it’s not a choice either. And although I am not going to die from it, I will have to live with it.
It's been suggested by a friend and my MIL (who both have fibro) that I may have it too, but with all the other stuff I deal with (depression, anxiety, PCOS, Endo) I'm just not ready to go through investigating such a hard to diagnose condition and I don't have the mental bandwidth to face that.
Hyperacusis and restless leg syndrome. Look them up, explaining would take too long. My ears are always throbbing with pain and I cannot sleep enough for the life of me because if I'm not moving, it's like I have beetles crawling on the inside of my legs. Not fun. That's before I mention the sh*t going on in my head.
I realize most of the people on here are having much worse problems than mine, so I'm going to go ahead and say it: Take care of yourself. Please. You may not be able to control what your body is doing, or the thoughts and emotions which torment your every moment, but whatever it is, your suffering does not make you any less of a person. Please take care of yourself.
l have fibromyalgia, but restless leg syndrome is a symptom of that. Even my mum and sister who have it too find it hard to understand why sometimes that is worse than the fibro pain. Not being able to sit still on the couch at night because of the prickles and cramping drives me crazy. Thankfully with getting more regular exercise and soluble magnesium it is not as bad at the moment but you never know for sure when it's going to hit. l have fibromyalgia, but restless leg syndrome is a symptom of that. Even my mum and sister who have it too find it hard to understand why sometimes that is worse than the fibro pain. Not being able to sit still on the couch at night because of the prickles and cramping drives me crazy. Thankfully with getting more regular exercise and soluble magnesium it is not as bad at the moment but you never know for sure when it's going to hit.
PTSD, depression, anxiety, social anxiety. I’m an introvert, however most people I know would say the opposite!
I tend to over compensate
ADHD and Most likely bipolar depression
I forget to take my meds for ADHD all the time and then Im just mess the whole day. And I'll be fine at school but when I get home I'm crying in my bed wishing people weren't calling me F***t
Depression, anxiety, ADHD, bipolar disorder, OCD
it’s a lot and since my mom won’t get me treated they keep building. Trust me guys, this combination of mental illnesses, is NOT fun. i’ve f****d up so many relationships because of this. I’m also absolutely terrified of myself because of my bipolar and i love my little siblings more than anything and i’m terrified i’m going to do something i’ll regret.
I just have to point out that while some people are violent when manic, most are not. Im usually just over the top, or too much. Lol. I hate being manic because i dont have any self control (if it feels good, do it. ). I spend too much money, eat too much, drink too much. I have a lot of sex but with my man. Im in a monogamous relationship and i dont need to go outside it to satisfy the craving. I hope that you can talj to the school councelor about getting some help. Bipolar can ruin your life in just one messed up decision.
I am in Renal failure. Stage 3. Bad enough to need lots of daily meds and feel exhausted all the time but not enough for dialysis.
When you don’t look sick people don’t understand the impact on daily life and it’s really frustrating having to explain why I can’t commit to social functions in 6 months time ! I don’t know how I might feel tomorrow for goodness sake !!!
Also having to apologise for having to explain it because you don’t want to look like you’re feeling sorry for yourself or after attention!!!
I’m so sorry you are going through that. I also have an “invisible” illness and these statements really hit home for me. The thing that frustrates me is, if people would take the time to care and pay attention it’s really not all that “invisible” at all
So I read most of the other answers and they all sound awful (I’m really sorry to those of you who have to deal with them) but my submission is positive.
I have synesthesia. There are a ton of types, (it basically means when your ‘brain wires’ are crossed and senses combine), but mine makes it so:
1. Every letter I read has a color. It’s the same color every time I read it, with the exception of T, which is dark purple unless paired with an H, in which case it’s Mac ‘n’ Cheese orange. Idk why.
2. Every time someone says a word, I see it in my mind’s eye. In its color.
I learned everything I know from google and have never told anyone about it, but I love my secret colorful world!
Anyone else with synesthesia, idk anyone who has it so please reach out & be my friend :)
I am losing my hearing more and more. My mom is deaf but wears cochlear implants and lip reads so it’s genetic for me to going deaf. It’s tough because I have lost my highest and lowest frequency hearing already. My husband has a very low decibel voice so lots of times he thinks I am ignoring him when really I don’t hear him. I sometimes fake being in a conversation with him and others just so they won’t have to repeat themselves. It’s exhausting. Thanks for letting me share.
I’m so sorry. This must be so frustrating to live with. Thank you so much for sharing!
Sarcoidosis. Called an “orphan disease” because not enough people get it to make it worthwhile for the pharmaceutical companies and medical researchers to study it to determine how to treat it. Varying degrees of the disease, from light to deadly (think Bernie Mack who died from it). Hard to diagnose without a lymph node biopsy, which I had. Symptoms are joint pain, swelling of lymph nodes, skin eruptions, to granulomas in the lungs. It can affect eyes and other parts of the body. I take pain control meds, antidepressants, nerve meds, and more to keep functioning. Black people have a higher incidences of the disease but no one is sure why, nor does anyone know how you get it. I am not black and in my late 40’s I got the disease. It truly is a pain in the a** to get it. Chemotherapy has been know to send the disease into remission but it is not a guarantee.
I’m so so sorry you have to go through this. I’ve never heard of it before but it sounds horrific. You will be in my thoughts and prayers!
PTSD, Anxiety, Depression - and a host of physical conditions all thanks to my six years in the Army. It makes it hard to meet people - or be around groups of more than two...
I have Beta Thalassemia Intermedia, a rare genetic disorder of the blood. It shows in regular blood tests as moderate to severe anemia, but it’s not. It was discovered when I was 21 while in basic training for the Air Force, and only then because the base hematologist had just taken a class on it the month before. The simplest explanation is that I lack the full amount of beta genes needed to produce enough hemoglobin to fully fill up my red blood cells, which is what oxygen bonds with to be carried around my body. It causes my red blood cells to be smaller than usual, to not live as long as they are supposed to before just disintegrating, and later batches of red blood cells are born not completely full so some of them take on weird shapes, like twisty donuts and sickles. A normal woman’s hemoglobin count should be 12-16, mine is usually in the 9’s. To put that into perspective, 8 is usually a mandatory blood transfusion because most people are completely unconscious at that stage.
It’s annoying because my body just doesn’t react to things like it should. Dehydration can land me in the hospital with heart palpitations. I get tired easily, tho I’m so used to it I can most times just push through it. And because my hemo count is naturally so low, I don’t need to lose very much blood before I ‘bleed out’. I had to have a 2 unit blood transfusion and came pretty close to dying after a c-section because the attending surgeon didn’t realize what my condition entailed before the surgery. My count dropped to 6.9 and the surgeon couldn’t understand why I was still talking and functioning. That’s the most frustrating thing about it, it’s rare enough that very few medical field workers know about it. I can’t take iron because my body can’t use it- I’m not lacking iron, just hemoglobin and so it will just accumulate in my liver and kill it. Yet just this past year I got yet another prescription for iron called in to the pharmacy. I’ve been in the emergency room for something unrelated and overheard doctors googling my condition at the nurses station. Kind of wish I’d taken the base hematologist up on her offer to be a case study.
I’m so sorry you go through that. It must be horrific to put it mildly! No need to apologize for length.
ligma type D
it makes it very hard to play sports (usually pertaining to balls) because i’m very uncoordinated now.
sports used to be life for me, and now it’s death
I’m so sorry I like can’t relate at all but feel that because sports is my life and I can’t imagine losing it. 💛🖤
Lazyitis- I can’t stop laying on the couch and watching my phone.
Jk
Anxiety-
Picture this: your in a pitch black room that’s barely the size of your body and you squished to the point where you can barely breath and there’s no way out. You are stuck there forever- and your family and friends try to get you out but nothing can get you out of that dark tight place
I have POTS, MCAS, EDS, Dysautonomia, and gastroparesis. If you don’t know what these things are I recommend looking them up as the explanations are too long to put here lol😂
Celiac - not as bad as many of these, but a huge pain. It's an autoimmune disease where your confused body thinks that gluten is the enemy. If you have the tiniest bit of it, you're body attacks itself, more specifically your small intestine. The pain is excruciating. Maybe TMI but I always vomit from the pain - not because I'm nauseous, but because the pain is that bad. The pain can last up to a week. Not as bad as it was at the beginning, but think walking around with a heating pad on your stomach for a week. The Celiac causes your small intestine to lose villi, which makes it harder for you to absorb nutrients, can lead to cancer, etc.
For me, the hardest part is not being able to eat at most restaurants. It's easy to find gluten free food, but a restaurant needs to know how to avoid cross contamination. If a cook touches something with gluten, and then touches my food, I'll get sick. Even if places have a GF only fryer, it's usually next to the regular one which splatters into the GF fryer, so again I'll get sick. We always say "Gluten Allergy" when ordering food so kitchens will understand how careful we need to be: food in a pan rather than on a grill, separate utensils and cutting boards, clean gloves, etc. I've discovered a website/app called FindMeGlutenFree that is great. People with Celiac can rate a restaurant as Safe or Not Safe.
I've found that activated charcoal can usually help if I've been glutened, but it doesn't do anything for my sister.
My Sunday school teacher as a child had this, she had a horrible time. So sorry you have to live with this condition
Mosquitos find my blood extra delicious, LOL
But seriously, I have a weird hip thing that makes me break shoes faster. It's gotten better though, and it's not serious at all. It's just a bit inconvenient.
Try vitamin B tablets to ward off mozzies, worked for me, but not my sister :)
Right soo...PTSD, OCD, ADHD, PCOS, diabetes T2, anxiety, depression, insomnia blah blah blah...
My PTSD is so bad I haven't really left the house in over 2yrs now. My PTSD is caused from school so yeah... that's fun! I hate interacting with people and even if I leave the house I stay in the car and cover myself with a blanket. I can barely go in the yard without having anxiety. I had to redo a grade since I didn't do it and I'm sitting here jealous that the other kids got to be freshmen's and now they'll be sophomores. In 10 days it'll be my 15th birthday and I won't be able to go out and have fun. School is hard to do as I can never focus and get things done. My grades suck due to that and I worried because I didn't want to redo but I got passed even with bad grades so now I'm going to be a freshman later this year. I have court soon and I'm scared they might take me out of the house. My period is sorta gone now after it being here for 2months so that's fun! (I hate PCOS 😤) I can't sleep at night because I get nostalgia, guilt, anxiety etc. I think of the future and what's to come, scared of growing old and having everyone die around me. Thinking back to the times at school and how much I missed out on being a kid and how my classmates at least get to go outside and play even though I know they still got problems themselves. I'm scared and it hurts. Everyday I worry over something and it is just to much. I just wish I could be happy. :/
I’m so sorry you struggle so much with all of this! You are definitely in my thoughts and prayers. Sending hugs and love your way!
I have hemiplegicserisulpalse it is where I have in my brain. It doesn’t effect how I think just how my body works. My left side of my body doesn’t work very well. Plus side I type with one hand and I’ve been told that is cool!
If you have questions ask I would love to answer them!
Where I have a hole in my brain sorry I didn’t put that up there
I have Optic nerve hyperplasia (ONH)
Basically my optic nerve didn't develop properly. I was born with it and have almost no vision in my left eye. I have to use a white cane when I go out into the store and have to read very large print or Braille. Glasses don't really help except to protect my eyes. If I was to get hit in the head hard enough, I would lose what little vision I have.
When I was with my birth parents, they didn't accept the fact that I was blind. So I didn't know I was blind until I was 8. That was when my foster parents (now forever parents) made me learn Braille. I didn't learn to use a cane until I was in fourth grade. But I didn't accept that until I was homeschooled. (7th grade)
If I didn't have a white cane, no one would know how bad my vision was because I learned how to hide it and adapt when I was little.
I also have ADHD. So that and blindness don't work very well when you have a strong desire to climb that tree that is in the front yard. :)
I so pleased you found a forever home :) I think it would be scary knowing your sight could be damaged more. I had an optic nerve pit when I was younger which I had laser surgery on and after that I had to avoid things that were considered risky, like playing squash, for a few months only though.
Dilated cardiomyopathy. Or a gene for that, anyway. It's when the heart muscle becomes really large and then, well, it stops beating. But before that you can experience a bunch of dangerous or not so dangerous arrhythmias. In my family, it's combined with limb girdle syndrome, where you lose muscle tone in the shoulders and hips. Upside: onset of serious symptoms is generally after 50-ish.
It killed my grandma at 54, before I was born. Luckily medicine is a lot better now, so my life expectancy and that of my dad is a lot higher. I've been getting regular checkups since I was 25 or so. They did find some arrhythmias that were bad so first I was on meds, then I had surgery (ablation). Most people get it only once, at an older age, but I'm expecting to have it more often, like my uncle, because it's a temporary fix for us.
Generally I'm pretty chill about it, but sometimes I talk with my dad about how it's a weird feeling, knowing what's going to kill me one day - unless I get hit by a buss first or something. And it sucks sometimes knowing I probably won't be able to ride a bike or go climbing when I'm 50.
neurofibromatosis type 1 (NF1). Was diagnosed at age 1. As a child I saw a neurologist and had many MRIs as a way to monitor it and detect any progression, if any. I have Plexiform neurofibromas, also known as plexiform tumors, they are tumors that can grow along nerves anywhere in the body. I have a lot of them. Most are benign and non-cancerous thankfully. I have many cosmetic skin discolorations on the outside of my skin, and many underlying bumps/tumors. From a very young age I was always told of the risk of internal bleeding that could result as a tumor bursting and leading to severe injury; as internal bleeding is very hard to trace the source. (I.e. I couldn’t play contact sports) I am a 30 yo M now and I’ve been very lucky that it’s been on the less severe side, as many cases can be much worse.
I have IBS anxiety and depression and it makes life hell. I can’t cry or get stressed because it lead to a panic attack and that cause and ibis attack which makes me cry more. It basically is a never ending cycle of pain.
I have narcolepsy type II. Basically I want to sleep all the time (and am capable of doing so, regardless of the situation).
It's not a horrible thing but it does mess with your life. If I get hit with a 'sleep attack' and don't find somewhere to sleep, I lose motor control - basically look like I'm drunk. I have hyperrealistic dreams and hallucinations, so often have to check whether things have actually happened. I'm not allowed to drive and if I run out of meds I sleep 18 hours a day (my longest nap was 26 hours, and I only got up because someone woke me). On the plus side, I can nap literally anywhere and crashing on someone's floor after a night out is zero problem.
It's leagues better than having type I. Those poor people just drop into sleep with no warning.
I had craniopharyngioma, a very aggressive brain tumor since I was 11 y/o. I had 4 surgeries for that, and many other health issues related to it (legally blind, no sense of smell, no pituitary gland so I have to take hormone replacements that cause another set of problems, a bad sense of balance, and so much more). It also caused major depression, and learning disorders, which made school almost impossible
Auto Immune Progesterone Dermatitis - allergic to the progesterone my body creates. Every cycle, parts of my body itch in parallel (eg left and right arm, same location). Itch is an understatement... it is under my skin. Allergy meds don't touch it because the hormones cause it.
It took 10 years to get diagnosed. Many Drs miss-diagnosed. When I was pregnant - lots of hormones - head to toe scratching. Not going to get graphic but it was bad. Dr said 'you must have scabies'. Gave me medicine that I had to apply all over, with open wounds, while pregnant. Was fortunate our child was only a month premature and lived.
How I was finally diagnosed: I had just reached the end of patience with it as it seemed to get worse. Itching all the time, not just at cycle (was preg and miscarried w/o knowing). My coworker came into the office one morning and found me subbing at my desk. I told her that I just couldn't live like this anymore.
She picked her purse up, grabbed my hand and walked me out the door... Took me straight to her OB/Gyn. She made them work me in. After 2 hours talking to the Dr, exam, scrapings... He said give him some time and he would be back. I wasn't going anywhere...I was done. About another hour later he came in and gave me the dx. There is no way to stop it except to have my ovaries removed. Which would be needed if my symptoms worsened. Gave me epi pen as I could indeed go into anaphylactic shock at any time.
That was almost 20 years ago. Still have it but it's easier due to reduced hormones with age. Knowledge enabled me to cope with it.
I asked her what made her take me to her Dr. She said she looked in my eyes and knew i might do something. When I asked why OB/Gyn... She said she was no doctor but the timing made her think it has to be related.
Thank you Kimmy. You saved my life. 💜
PFS commonly known as food pollen syndrome. It’s an incredibly rare allergy condition that affects almost everything i can eat or touch. I’m allergic to almost all raw fruit and vegetables, i’m one of the only people in south africa with a ragweed allergy due to the fact that i moved here from america and ragweed isn’t native to south africa.
There’s many types of trees, shrubs, weeds and so much more that can give me really bad welts :(
it’s also triggered a sever bee allergy so that sucks. Anyway it’s actually getting better by the day!!
I have a whole host of issues, but I think the two that screw with me the most are my migraines and fibro. Having a fibro really sucks because it's so misunderstood, invisible and a lot of people have misconceptions about it. One of the worst parts of my fibro is imagine taking a feather very lightly across the most sensitive part of your body and that intense feeling you get multiply that about by 10 and it goes from the top of my head to the bottom of my feet all at one time. It can cause me to twitch and lock up and twitch because it's so intense. And that's just the beginning of the issues. The migraines are a s**t show because on top of basic migraines I also have what are called hemiplegic migraines. Those are migraines that mimic strokes, in 2001 I lost all uses my right side for about 6 months and then one day I was all better. It also causes me to have issues with words and that's very embarrassing because my brain will throw out something related to what I'm thinking but not the right word, so when it's really bad I might ask for a fork when I mean a knife or if I'm talking about barbecue sauce it might be flavorful tomato it's really embarrassing. Due to all my health issues I've been on disability since 96 and I wouldn't wish any of my conditions on my worst enemies. Oh and I have an extremely dangerously high pain tolerance to the fact that I shattered my leg and thought I had only sprained my ankle. People tell me a high pain tolerance is a good thing, no no it's not it can actually lead to more damage and my doctor has told me if it sort of hurts just go in because it's probably worse than I think.
Narcolepsy! It’s one of those conditions with varying symptoms and intensity. I have Narcolepsy type 1 with cataplexy. For the most part I have learned to cope over the years and with medication I can get through most of a day normally, work and drive short distances. If I do not take my meds or I try to stay up past the usefulness of the meds I can feel sleep attacks coming on and have to go to bed quickly or risk falling asleep wherever I’m at. I also have sleep paralysis, hallucinations and nightmares. These are mostly controlled with medication as well. One thing I still have issues with is cataplexy. If I experience really strong emotions of anger, fear or anxiety my hands and face start to go numb and I’ll start to slur my speech. It’s less severe with medication but definitely still happens.
In the past I’ve worked office/tech jobs where I’m sitting most of the day and I’d fall asleep even with meds.
Now I work in a very busy field where I’m constantly moving which helps stay awake and mentally stimulated. If I didn’t take my meds though I’d risk injuring myself or someone else falling asleep (even standing up).
I’m super fortunate to have a partner who respects my condition, doesn’t get mad when I have to go to bed at 8:00pm or take a nap on vacation. He picks up a lot of extra slack around the house and doesn’t make a big deal. Not many people with narcolepsy are as lucky to have a partner that works with them and doesn’t make them feel guilty for being a “sleepy b!tch” as I so eloquently call myself. Even most of my family doesn’t understand and gives me a hard time.
Where to start? Chronic fatigue, fibromyalgia, arthritis, degenerative disc, spinal stenosis, sciatica, diabetes, CIPN (Chemotherapy Induced Peripheral Neuropathy-worse than diabetic Neuropathy), fibro fog, memory loss, clinical depression AND in remission from breast cancer. I was pretty healthy until about 15 years ago, and now i feel 80 years old (I'm 56). I'm in constant, daily pain which can be affected by the weather, stress, physical activity or simply moving wrong. I take 21meds each morning (includes vitamins), 2 every afternoon and 6 every night. And if one condition bothers me, it affects the others. Especially fibro, arthritis, degenerative disc, spinal stenosis, and sciatica all in the same area in my back. I'm allowed 6 norco-10 a day but I'd be a zombie if I took that much. Rarely take more than 2, just deal with the pain. You do what you have to.
Where to start? Chronic fatigue, fibromyalgia, arthritis, degenerative disc, spinal stenosis, sciatica, diabetes, CIPN (Chemotherapy Induced Peripheral Neuropathy-worse than diabetic Neuropathy), fibro fog, memory loss, clinical depression AND in remission from breast cancer. I was pretty healthy until about 15 years ago, and now i feel 80 years old (I'm 56). I'm in constant, daily pain which can be affected by the weather, stress, physical activity or simply moving wrong. I take 21meds each morning (includes vitamins), 2 every afternoon and 6 every night. And if one condition bothers me, it affects the others. Especially fibro, arthritis, degenerative disc, spinal stenosis, and sciatica all in the same area in my back. I'm allowed 6 norco-10 a day but I'd be a zombie if I took that much. Rarely take more than 2, just deal with the pain. You do what you have to.
