Chronically ill nerdfighters?

turdl38turdl38 Posts: 976 ✭✭✭
So...I've read seen some threads about depression and about tiny chicken disease, but nothing about chronic physical illness.  I mean...we all know Hank has ulcerative colitis and I know what's "wrong" with me, but...is there anybody else out there who's dealing with feeling crappy pretty much every day?  I guess I just need to feel less alone in my crapness 
Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
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  • fishasaurusfishasaurus AustinPosts: 8
    Hi there! I have fibromyalgia, vertiginous migraines (I'm dizzy ALL the time), chronic fatigue, irregular heartbeat, eczema, asthma and chronic bronchitis. I'm allergic to all raw plants, including ones of the food variety, and due to strabismus/amblyopia (lazy wandering eye), I do not have depth perception and I run into things, which does not go well with the fibromyalgia! I also have a tendency to grow benign tumors in inconvenient places, and super constipated, ALL the time. I got drug-induced Parkinsonism as a side effect to a medication I took a couple years ago, which has mostly gone away, but I occasionally get tremors that make it so I can't hold a pencil or use a mouse. I might also have arthritis starting in a knee, but I've learned to stop chasing diagnoses after throwing away tens of thousands of dollars for inconclusive medical tests.  My chronic pain is bad enough that it affects my ability to concentrate, so I have to get disability accommodations at school. I can't stand for longer than 10 minutes and I need a cane to walk.

    There's probably more, but you get the idea. You are DEFINITELY not alone!
    Ask me about nanotechnology!
  • dyaizondyaizon Posts: 86 ✭✭
    edited January 2013
    Like Hank I have an inflammatory bowel condition, though not ulcerative colitis, and whilst meds do help a bit, it's still pretty uncomfortable and a right pain in the ass (both figuratively and literally ;) ).

    I think related to it I have a couple of psychological issues, including anxiety, which I live with most of the time without much of a problem, but occasionally flare up.
    by dyaizon
  • MortbaneMortbane Posts: 126 ✭✭✭
    I'm just getting over a lung infection that lasted nearly four months.  Even though the antibiotics seemed to have helped that and I feel okay when I'm at home, when I go to work I seem to get more accumulation of really thick crud in my lung and it makes me wonder if it's something in the work environment making me sick.  That really sucks for me, because this is the first job I've had that I liked and the pay (even though I don't get the hours I'd like) is great.  I have developed more allergies in the last couple years, and my sinuses are inflamed on a regular basis which gives me horrible headaches and sometimes nosebleeds.  I worry about it a little because my grandfather died of lung cancer and he didn't smoke, and most of my other relatives who have died since 2000 have died from pneumonia.  We don't have particularly strong respiratory systems.  Some of the people who live at the apartments where I work have COPD and they sound about like I do when I have a coughing fit.  Not looking forward to that future.
  • turdl38turdl38 Posts: 976 ✭✭✭
    Thank you.  Still feeling kind of discouraged, but less alone.  
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • RobertStyxRobertStyx Posts: 30
    I have IBS. It's not too bad really, it can be controlled by watching my diet, so it rarely acts up, and is only painful once in blue moon. Though, because I can't eat a lot of things, I've found myself craving odd things I used to like eating, like carrots. Seriously, who the PIZZZAA craves carrots!?
  • turdl38turdl38 Posts: 976 ✭✭✭
    I suppose it's time to "come clean" and state what's going on with me.  It's a list: chronic pain that we can't really figure out and assume has to be a result of leukemia treatment (also still not 100% settled), asthma, IBS (though much better now that I've gone vegetarian), mild heart condition, allergies, and hypoglycemia.  And today I've got a fever, cough, and am kind of generally miserable.  But I'm sure I'll live.  
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • SCTSBLUSCTSBLU Posts: 20

    I probably have IBS (as in my doctor said it seemed like I did but the way he said it was quite arbitrary)but I definitely have something...

    I am also both hearing impaired and visually impaired which although isn't an illness it is chronic...

    I also have depressive tendincies (as you might have guess im not big on self diagnostics lol)

    so...yaa :)

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  • ThatsNoDooryardThatsNoDooryard Posts: 45 ✭✭
    edited January 2013
    A few years ago I passed out and had go to the hospital because I tore a chunk of flesh out of the bridge of my nose. While there the doctors ran a multitude of tests and told me that I have incredibly low blood pressure due to a sodium deficiency, which triggered a vasovagal syncope. In simple english it means that when I stand up my blood pressure can't adjust fast enough so my brain just kind of shuts itself off. But because it is caused by something as simple as a sodium deficiency my doctor told me to add salt to most,if not all, of my meals, and to drink sports drinks because of the electrolytes. I've only ever passed out once since then, but whenever I stand up I completely lose my vision, my heart begins to beat incredibly fast, my speech becomes laboured, and I begin to over heat. It doesn't cause much pain, but it is incredibly worrisome knowing that just getting up from the dinner table could land me face first into the floor. 

    I'm also lactose intolerant, but the discomfort from that is a small price to pay for the satisfaction of a chocolate milkshake.
    by ThatsNoDooryard

  • christinachristina Posts: 41
    @ThatsNoDooryad I'm dealing with a very similar thing. I'm recovering from POTS, which for me has a lot to do with my low blood pressure and electrolyte deficiency. The past fifteen months has sucked because of it. 

    I also get migraines and have had headaches my entire life. I got real treatment for them a year ago and I've been mostly headache-free for the past nine months. I never thought that would happen, especially because they got so bad after I had brain surgery three years ago. The surgery was for a non-chronic problem, but we found out about it because I have neurofibromatosis which sounds a lot scarier than it is for me. I just have to be diligent about following through with checking out any sort of weird growths that show up. This also is probably related to my insomnia and ADD-like learning disability. 

    I also deal with anxiety and depression issues. 

    I took a year off of school to deal with a lot of this stuff, and I'm mostly on the mend, but it's still a management type of recovery, and not a it's-gone-forever type thing. 
  • SynnoveSynnove Posts: 16
    I have diabetes, which sucks! But I have medicine so I feel alright most of the time. 
    I was diagnosed just a couple of years ago, but you get used to it really fast. The most annoying thing is that my life now is all about when I last ate and my blood sugar. Sometimes it feels like people don't see me. They just see diabetes.

    But I'm good, sorry for ranting! I also have coeliac disease so I can't eat gluten.
  • turdl38turdl38 Posts: 976 ✭✭✭
    I get that feeling of seeing a disease and not a human ALL the time!
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • EustaciavyeEustaciavye Posts: 116 ✭✭
    I'm pretty healthy these days but for many years I was constantly fighting respiratory infections. It got really bad between 2005 and 2007 to the point where I was sick more than I was well. Eventually I came out of it, no idea why but I'm grateful for it. These days I only get 2-3 a year though they are pretty intense when I get them. I hope for similar recover for some if not all of you guys. Being sick all the time sucks!
  • turdl38turdl38 Posts: 976 ✭✭✭
    Today is one of thoe days that the reason I started this thread is just making me sad...and want to curl up in a corner with a person and a blanket and maybe a book or movie and just forget the world.  So unlikely to happen, though.
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • @fishasaurus My mom has Chronic Fatigue Syndrome as well. She also suffers from chronic pain, which I saw at least one other person post about.
    I, myself, suffer from extreme chronic insomnia. I know that's not really an "illness," but it is a bitch to deal with. I take muscle relaxers to help me sleep (because actual sleeping meds tend to flare up my bipolar, and I'm not on any sort of meds for that), as well as ZzzQuil, or NyQuil. An example of how bad the insomnia actually is, I took my sleeping pills about two-and-a-half hours ago, and they're just now barely kicking in.
    I also, like a few others I saw, suffer from my own set of bowel disorder. Chronic constipation. It runs in my family, and it effing sucks. When I'm good, I'm really good, but when it's to the point where I haven't gone properly in over two weeks (like now), I feel like complete, and total crap (all puns intended). As @dyaizon said, it is a serious pain in the ass.
    I also screwed up my left knee a few years ago at a Nine Inch Nails concert, and it's become an almost constant irritant. I can't sit in the same position for too long, because the joint swells, and gets really sore. Walking around Wal-Mart or the mall because difficult, especially if it's a lot of walking really fast, without many breaks, which I tend to do if I'm just running into get ZzzQuil, or something.
    Chronic illness effing sucks. Just sayin'.
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  • GeorgiaLeeGeorgiaLee Posts: 43
    @fishasaurus -- me too! About the fibromyalgia. I've had FMS probably about, well crud, 10 years now. I also had severe headaches and migraines pretty much every day.

    I had terrible asthma all through childhood, which cleared up slightly (read: I didn't feel like I was going to die from climbing some steps at school) just in time for me to start noticing that my "growing pains" were actually something much more serious. Fibromyalgia took a lot out of me, and still does, though these days I'm managing it a lot better - both physically and mentally. Its very difficult to not be absorbed by the massive entity that is your illness, but it is doable. One day at a time. 

    Sorry @turdle38 that the thread made you sad! I suppose its hard when people start introducing their chronic illnesses, we all get a bit overwhelmed. Its nice to get it out there though, to know that you're not alone, and now that people are sharing it's so much easier to talk about how you feel.
  • turdl38turdl38 Posts: 976 ✭✭✭
    edited March 2013
    It's not so much the thread as just...the reason I started it.  And I agree that it's nice to know you're not alone....or at least not AS alone. 
    by turdl38
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • shaileeshailee Sri LankaPosts: 233 ✭✭✭
    I dont belong here as I'm not sick. Not even a cold. But I read a few comments here and there and it all made me feel like an utter unappreciative moron. I've been mostly healthy all my life, well, except for the constant teeth related issues (sometimes I think my dentist is my best friend!) When I was quite small I had a flu of some sort which landed me in hospital for quite some time. Besides the few injuries childhood recklessness brings about I've stayed away from doctors.
    And I've always hoped for at least a week long cold or fever. Because I never fall sick! My cousins have asthma, my mum has this arm ache and here I am, healthy as ever. So I've always wanted some illness and for the first time it really hit me how happy I should be, that my lungs and heart and kidneys and whatnot actually like me.
  • GeorgiaLeeGeorgiaLee Posts: 43
    @shailee -- I understand what you mean, like, its something you can't really wrap your head around. I've always been very ill, but like never had a broken bone, which was such a "normal" experience in life. Last year though, I had a hallway run-in with my cat and I had two trajectories for my foot - either the wall, or the cat. I chose the wall, to protect my cat. Bad choice, she's fluffy, the wall isn't. I broke several toes.

    And I felt very normal and had a very sudden realisation that I really actually didn't want broken bones.

    Sometimes when you get closer to people with chronic illness, you realise that you really don't want the kinds of things these people experience as "normal". There is a very stark reality that comes with these conditions. I didn't exactly register it either, the first year or so I was ill, it all felt like some dramatic movie. Then one day, after some chiropractic treatments, I overheard the chiropractor telling my mother that he could see me in a wheelchair in less than a year. (I have no idea if he had any authority to say it, but as a young girl... like, it was scary?).

    It all kind of hit me then. I had to accept this as a really bad real situation, I had to do something and help myself.

    Its not something you ever want, and when you do reflect on it (as I do now, being wheel-chair free and on very little medication now), you do feel so lucky to be a reasonably well functioning human being. Like you said, its nice to have organs and body-bits that actually like you. :)
  • adelinereneeadelinerenee Posts: 80 ✭✭
    Ive been a type 1 diabetic for 9 years now and its not so much managing it as it is tolerating. I dont have anyone in my school with type 1 so none of my friends really understand what its like living with a chronic illness that is with you every second of the day. There are days when I just want to explode cause Im so fed up with going from 300 to 48 in an hour and there are days when I deal with it better. I dont really let it take control of my life, Im probably the only diabetic in my state thats on aVarsity Cross Country team. 

    My brothers the one that scares me. My mother when pregnant with him had toxoplasmosis, which attacked his eye leaving him blind in his left eye and with really awful vision in his right. There's also been a string of other illnesses connected to toxo, most notably seizures ( not epilepsy) and constant migraines. He's had to go into the hospital for all sorts of things. Really scary for a kid whose only 14.
    "We are here to laugh at the odds and live our lives so well that Death will tremble to take us." 
    -Charles Bukowski

  • turdl38turdl38 Posts: 976 ✭✭✭
    My step-dad is a diabetic, so I kind of understand where youre coming from.  I was diagnosed with cancer at only 14, so I feel for your brother.  Wish you both the best!
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • geekacrossthestreetgeekacrossthestreet Posts: 166 ✭✭✭
    I have migraines that cause me to be in a whole lot of pain a majority of the time. They don't know what's actually causing the headaches, which is really scary.
  • turdl38turdl38 Posts: 976 ✭✭✭
    @geekacrossthestreet have you had a lumbar puncture/spinal tap to look at the possibility of pressure around the brain and/or pseudotumor?  I have a friend who had VERY frequent headaches and they found it was that.  Reasonably easy to treat.  Just thought I'd ask.
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • christinachristina Posts: 41
    I just need to bitch, but chronic illness has officially forced me to change my major/degree plan. My school does one class at a time, so it's fairly unforgiving to chronic illness because when you're having a bad week, you're useless for a third of the class. 

    I got a cold which triggered extreme fatigue, difficulty sleeping, and severe migraines. I'm in a pre-req wanted to switch to pass/fail, but my combined planned advisor got pretty pissed via email and then other PIZZZAA happened and it just did't seem worth it any more.

    I think it's for the best, but I just feel so betrayed by my own body and so vulnerable because this feels like it's making so much of a bigger impact than when I had to take time off. 
  • geekacrossthestreetgeekacrossthestreet Posts: 166 ✭✭✭
    @turdl38, no not yet. That hasn't really been brought up. The doctor doesn't seem to think that I have cancer or any kind of pressure on the brain, just migraines. 
  • GeorgiaLeeGeorgiaLee Posts: 43
    @geekacrossthestreet, my headaches and migraines work a bit like that - I've had scans and stuff but it was all non-conclusive, so I just try and deal with it which sucks heaps but I'm just kind of glad that my head isn't going to explode or anything. I like @turdl38's idea of the spinal tap, I've never thought about asking a doctor about that.

    @christina, sorry to hear that illness messed up your degree plan. Can you apply for any special consideration? I'm not sure if you're a uni student or other, but like, I think some establishments have assistance programs or leniency grade wise?  Also that plan advisor sounds lousy. I feel so annoyed when able-bodied people wont take a moment to consider how difficult things are for people with medical disadvantages. 
  • turdl38turdl38 Posts: 976 ✭✭✭
    I've known a few people with headaches/migraines that didn't seem to be easily diagnosed/treated that got an LP that looked at entering pressure and that was just the thing, so it may be worth at least asking.
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • twirlgirlroxtwirlgirlrox Posts: 2,056 ✭✭✭✭✭
    edited March 2013
    Hi guys. I just saw this thread and thought I'd join in. I have Degenerative Disk Disease in my spine, which is commonly a side effect of aging, but I am only 15 and from the progression I've had it since I was about 8. So yay I'm a medical mystery. My L5 disk (the spongy things between the bones in your spine that keep them from hitting together) is pretty much completely destroyed, and my most recent MRI shows it looking like it got hit by a truck. I wasn't diagnosed until November or so, and since I've been given all kinds of exercises, stretches, and other things to try and fix it. The pain has subsided a lot, but there's a constant ache that will probably never go away, and if I work too hard it hurts like hell. It keeps me from doing lots of fun stuff, but at least it won't kill me. Like Hazels mom said in TFiOS, it's just a thing and it's a thing I can (and have to) live with. Compared to some of you guys, mine seems like a walk in the park though. But glad we can all support each other :) well wishes to you all!
    by twirlgirlrox
    Innocent Little Flower of the Last Ones

  • GeorgiaLeeGeorgiaLee Posts: 43
    You sound very determined @twirlgirlrox! Its hard to live with pain, but good on you for being as positive as you can. :)
  • twirlgirlroxtwirlgirlrox Posts: 2,056 ✭✭✭✭✭
    @GeorgiaLee thanks :) I try to stay positive, since its something that's going to pretty much be there forever. There's nothing to gain by complaining about something you can't change. I just wish I knew more information about it, I seem to baffle every doctor I meet. What bothers me the most though is this: I go in to the doctor for a sickness (fever, bad cold, something completely unrelated to my DDD) and as soon as the doctor pulls up my medical history and see all the crazy tests an stuff they know who I am and start questioning me. "How does your back feel today?" "Can you tell me more about Dr. Something's theory on what caused this?" "Do they still have you in physical therapy?" I almost thought one was going to ask for my autograph. One almost walked out of the room without saying a word about my possible case of influenza. Does this happen to anyone else?
    Innocent Little Flower of the Last Ones

  • sparklezjolrassparklezjolras Posts: 42
    My right eye is amblyopic, so I don't have depth perception. I also have an underdeveloped optic nerve in my right eye, so I can only see through my left. 
    Its not actually that I can't see through my right, more like I can only see through one eye at a time. 
    I'm also anemic, but I feel that the eye problems affect me more, especially when it comes to sports. 

    There's also the strange case of my respiratory system? I don't know if this is normal, but when my nasal passage gets decongested (even if it's just a light cold) I get really high fever.
    A world about to dawn. The night that ends at last.
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