Chronically ill nerdfighters?

13

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  • ConstellationsConstellations South CarolinaPosts: 1,709 ✭✭✭
    Hm, update.
    I went to a different doctor today and he presumed the issue was not, in fact, my lungs, but that I could have some fibromyalgia instead. Which is.. super comforting. -rolls eyes- More annoyingly, he told me to return to (normal) school, which I was planning on anyway, and whenever I felt horrible to basically just bite the bullet and keep going. ("Unless your fever's over one-oh-one or they have to haul you out in a stretcher. -chuckle-") Which is a bit of a slap in the face, but he wants to raise my pain tolerance. Any thoughts?
    "You do not immortalize the lost by writing about them. Language buries, but does not resurrect."
    "I was thinking about the word 'handle,' and all the unholdable things that get handled."
  • RialVestroRialVestro Posts: 6,335 ✭✭✭
    Hm, update. I went to a different doctor today and he presumed the issue was not, in fact, my lungs, but that I could have some fibromyalgia instead. Which is.. super comforting. -rolls eyes- More annoyingly, he told me to return to (normal) school, which I was planning on anyway, and whenever I felt horrible to basically just bite the bullet and keep going. ("Unless your fever's over one-oh-one or they have to haul you out in a stretcher. -chuckle-") Which is a bit of a slap in the face, but he wants to raise my pain tolerance. Any thoughts?
    My only thought is your doctor is an idiot. His job is to treat symptoms of pain not raise your tolerance to it. X(
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • ConstellationsConstellations South CarolinaPosts: 1,709 ✭✭✭
    Hey, guys. =] I have a question, and I see a few of you have actually posted with this issue.
    I was looking (cautiously, not like a hypochondriac) into the symptoms of chronic fatigue syndrome, and many of them seem extremely familiar. (This is coming from a person who has slept at least 14 hours a day for 98% of the last year during a period of severe stress, developed (sudden onset) very unpleasant headaches with no known cause, has a relentless recurrent sore throat, and particularly has unknown respiratory distress (previously listed), among other things. Would it be stupid to go to my doctor with these symptoms and perhaps suggest this? I'm not trying to self-diagnose, and I don't want to seem like a prick for mentioning this. I wouldn't even consider bringing it up if it hasn't lasted a minimum of the last year. Any thoughts or suggestions?
    "You do not immortalize the lost by writing about them. Language buries, but does not resurrect."
    "I was thinking about the word 'handle,' and all the unholdable things that get handled."
  • RialVestroRialVestro Posts: 6,335 ✭✭✭
    Sleeping too much can actually be just as bad for you as not sleeping enough. Before you go to the doctor I would recommend avoiding the snooze button for a while. See if you can adjust to a normal sleep schedule. Anything more than 8 hours is too much. You'll end up feeling tired if you sleep more than that and want to sleep more which only makes the problem worse but if you can force yourself up and readjust then you're fine. Just symptoms of over sleeping not an actual sleeping disorder. If however you've already tried this or you try it over the next couple of weeks and nothing changes then you might actually have a problem.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • HelenaInABasketHelenaInABasket Posts: 77 ✭✭

    Preface:  I'm not a medical professional and this is not to be considered medical advice.  Just food for thought.

    This is going to sound horribly insensitive, but pain management is a serious part of dealing with chronic illness.  If he can raise your tolerance, it could help in the long run.  A lot of folks who are in pain understandably want medication, but as your body gets used to that medication you have to up the dose or try a different cocktail.  This can be heartbreaking, as there is the very real risk of drug dependence both chemical and psychological, and increasingly expensive.  There is the additional risk of "drug seeker" label when you are on narcotics long term.  On the other hand, you could experience pain and since those nerves are constantly "firing" then there's an issue with being more sensitive to pain or that future pain might feel worse than the pain your were originally dealing with.

    Unfortunately, there's no cover all answer and I think it's really case by case depending on the person and the diagnosis/frequency and intensity of symptoms.

    Also, most doctors I've encountered don't have a grain of good bedside manor.  I think there is something that happens once you see the insides of folks or trauma wounds or burn wounds or people who are terminally ill that kind of makes everything else pale in comparison.  It's not right, I think, but I can understand it because you can't be a bleeding heart for the sake of your own sanity.

    With that said though, my heart goes out to everyone in this thread who is struggling.  
    My soul has been so fearful, so violent: forgive its brutality.
  • turdl38turdl38 Posts: 976 ✭✭✭
    @constellations, there are a LOT of conditions that can cause fatigue and stuff.  I highly recommend at least talking with a doctor about it, and probably getting a sleep study.  It may be that you have apnea or restless legs or something that is causing you to want to sleep more than is normal.  By the way, "normal" for an adult is considered between 7 and 9 hours.  Some can get away with six, but generally more than about 9 and a half on a regular basis is considered too much.  If possible, take a week to go to bed at the same time every day and then just wake up naturally, without using any kind of alarm.  Then record the times and stuff to take the data in to the doctor--any info like that is generally very helpful.  
    Also, practice good sleep hygiene-things like limiting caffeine, alcohol, spicy or heavy food, and screen time an hour or two before bed, exercising during the day (again, not for a while before bedtime), avoiding napping during the day, making sure you're getting enough vitamin D and natural light, using your bed only for sleep and sex (getting up and moving to a chair or something to read or whatever if you don't fall asleep within about 20 minutes), keeping a comfortable temperature, etc, etc
    Good luck!
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • turdl38turdl38 Posts: 976 ✭✭✭
    Also, if you're in pain or just generally feel like your doctor isn't addressing your issues, it's totally allowed to fire your doctor and seek second or third opinions.  Increasing pain tolerance isn't necessarily a bad thing, but you have to be out of pain enough to function.
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • RialVestroRialVestro Posts: 6,335 ✭✭✭
    turdl38 said:
    Also, if you're in pain or just generally feel like your doctor isn't addressing your issues, it's totally allowed to fire your doctor and seek second or third opinions.  Increasing pain tolerance isn't necessarily a bad thing, but you have to be out of pain enough to function.
    I find that comment really offensive. I don't believe anyone should have to tolerate pain EVER. I also don't believe it's even possible to increase pain tolerance. Of course this is coming from someone who has be suffering constant pain for 27 years.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • turdl38turdl38 Posts: 976 ✭✭✭
    I've been in constant pain for several years too, so I get the frustration of feeling like it's not being addressed.  Like I said, if you feel if it's not being taken care of, fire your doctor and seek other opinions.  
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • Ev8Ev8 Posts: 39
    @RialVestro I think there can. Before I found out what real pain is I used to take painkillers for everything. Now I know a little bit better. I know where most of my pain is coming from. I know there is nothing to do about it. And I know how bad it can get. I have different pains every day. For example: I have headaches 24/7. I consider them background noise and try to distract myself instead of taking strong pills. I’m not saying it works every time. But I try. I could take stronger pills but those have side-effects. My doctor would prescribe them to me if I asked. But I won’t ask. The pain isn’t so big yet to make the side-effects justifiable. So, I take a bit milder pills and try to live with the pain (what’s mild for me might not be the universal concept of that word). I decide if pain is strong enough for me to take something because of it or wait until it goes away or at least becomes manageable. If it doesn’t, I’ll take the pill.
    I also have horrible muscle spasms. They aren’t going away, either. Since the source isn’t going away. I refuse to take a pill during the day because I know I have to take one in the evening so I can sleep. They get really bad at night. During the day I’ll just have to tolerate it. There are only so many painkillers I can take a day and I have to decide if the pain is worth it or not.

    What is that if not building pain-tolerance?


  • RialVestroRialVestro Posts: 6,335 ✭✭✭
    Ev8 said:
    @RialVestro I think there can. Before I found out what real pain is I used to take painkillers for everything. Now I know a little bit better. I know where most of my pain is coming from. I know there is nothing to do about it. And I know how bad it can get. I have different pains every day. For example: I have headaches 24/7. I consider them background noise and try to distract myself instead of taking strong pills. I’m not saying it works every time. But I try. I could take stronger pills but those have side-effects. My doctor would prescribe them to me if I asked. But I won’t ask. The pain isn’t so big yet to make the side-effects justifiable. So, I take a bit milder pills and try to live with the pain (what’s mild for me might not be the universal concept of that word). I decide if pain is strong enough for me to take something because of it or wait until it goes away or at least becomes manageable. If it doesn’t, I’ll take the pill.
    I also have horrible muscle spasms. They aren’t going away, either. Since the source isn’t going away. I refuse to take a pill during the day because I know I have to take one in the evening so I can sleep. They get really bad at night. During the day I’ll just have to tolerate it. There are only so many painkillers I can take a day and I have to decide if the pain is worth it or not.

    What is that if not building pain-tolerance?

    Think about this from my perspective. I have never been able to take pain killers, never gotten anesthesia, well I have been given it but it has no effect on me so I feel all the pain anyway. So you think choosing to feel pain is tolerance? What do you call it when it's not your choice? When you have to suffer every day because you can't do anything else. If I could I would happily down any pain killer I could if it actually worked, screw the side effects. To me even the "small" pains are worth it. I can't understand people who choose not take pain killers when they're in pain.

    Think about it this way... in some religious they have a thing called fasting when they choose to basically starve themselves for a week. They can eat after sun set but sense people normally sleep around that time it's basically 1 meal a day or not at all depending on how early you go to bed. Now imagine someone trying to explain fasting to someone who's starving and doesn't know when they're going to get their next meal. That's basically what you get when you try to explain to me why you choose not to take pain killers.

    I knew this girl a couple years ago who was in a car accident. She was given pain killers but refused to take them. I told her about my condition and practically begged her to take the pain killers. I don't know if she ever did, she said she would but she could of just been saying that to make me feel better.

    Point is, maybe it is pain tolerance but you shouldn't need to build a tolerance if you don't have to. If you have the option to live without pain why wouldn't you take it? You're basically just taking for granted something that I would love to be able to take advantage of.

    You want to know how I function with so much pain? Lack of choice. I could lie in bed all day and not move but I wouldn't be in any less pain than if I got up and did things. That's the only reason I function. No one should ever live like this if they don't have to.

    I wish I could trade bodies with someone that chooses not to take pain killers. If you're going to choose to live in pain anyway why not take my body then when I'm in yours I can take all the pain killers I want.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • Ev8Ev8 Posts: 39
    edited June 2013
    If you start a game of "who has it worse" with me you won't win.
    I think you missed my point. This pain is such a tiny part of my disease & everyday life. There are so many things about my health I cannot decide. But this is the one thing that is somewhat under my control at the moment. I wanted to explain to you that - in some cases - it is doable.
    Somebody already explained this:

    This is going to sound horribly insensitive, but pain management is a serious part of dealing with chronic illness.  If he can raise your tolerance, it could help in the long run.  A lot of folks who are in pain understandably want medication, but as your body gets used to that medication you have to up the dose or try a different cocktail.
    It's not exactly the same with me but the idea is the same
    by Ev8

  • RialVestroRialVestro Posts: 6,335 ✭✭✭
    I take it back, that is the most offensive thing I have ever read. Rather than being thankful that you can take a few pills and not feel whatever it is you think is so bad you want to make a game out of comparing pains? It's not a game and there's no winner.

    I don't know what you've been threw, you could very well have it worse than me, that is if we both had the same options. I can think of a lot of things that are worse than anything I've been threw but I'm not saying my pains are worse because I've lived threw the most horrible things ever, I'm saying it's worse because I can't get any relief. No matter what horrible thing you've had to deal with the only thing stopping you from getting relief from that pain is YOU. It doesn't matter if you've been shot, stabbed, bludgeoned in the head with a base ball, or whatever else you think is so bad because YOU DON'T HAVE TO FEEL IT.

    If you want to compare pains then fine you have it worse but I'm not comparing my pain to yours, I'm comparing your ability to take a few pills and not feel any pain to my having to suffer with no relief. So what if your pain is worse, at least you don't have to suffer, that's your choice. Deal with that constantly when you don't have a choice, then you can tell me you have it worse.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • LazarusLazarus Posts: 353 ✭✭✭
    I recently got more stuff added to my list. I always knew I had allergies, I just didn't know how many. I went to an allergist for the first time (been putting it off for years) they ran some blood work, and tested me for 45 diffrent allergins I came back positive for 38 of them, almost everything except for dust and molds and dogs. This includes a lot of veges and fruits as well as grass and trees and plants in general. And now I have a nice epi-pen traveling case.
  • Ev8Ev8 Posts: 39
    edited June 2013
    @RialVestro I'm not trying to offend you - but trying to explain to you what my point was. I am not comparing my pain to yours. I am not saying your pain is little or insignificant. I don't know you or what you have been through therefore I can't (and wouldn't try to) compare our situations. It is not possible.
    You suggested changing bodies. I suggested you not make it a game not that I wanted to make it one. I have never thought of this as a game. And you do not want my body. It will not be an improvement. I did not say my pain is little. It is a little part of my disease. And I don't think it's bad, it is bad.
    I'm not saying this is right for you. Only you can decide that. But it is working for me. That's what I'm saying. That it's not impossible in some cases. If you do have a choice. Mine is to deal with a little of the pain instead of the side-effects that are not so small for me.
    by Ev8

  • RialVestroRialVestro Posts: 6,335 ✭✭✭
    @Ev8 I wasn't trying to make it a game either. I was just trying to get a point across that if I had the choice to take pain killers I would. I also didn't mean that your pain was little or imagined, just it doesn't really matter how great the pain is if you can actually make the choice to get rid of it.

    Simply put, you're options are don't take pills and live with pain or take pills and don't live with pain. My options are live with pain no matter what I do. And seriously what side effects are so bad that it's not worth the relief? Also there are natural alternatives you could try that might work just as well without the side effects if they really bother you that much. Obviously I can't vouch for how effective they'll be but I know they exist you could at least seek them out and try to find something that works better for you.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • Ev8Ev8 Posts: 39
    @RialVestro that is a good point and I get it. Again, I was not trying to offend anyone.
    I'm still looking and experimenting with different pills. The problem is I can't take some if I take the others.

  • RialVestroRialVestro Posts: 6,335 ✭✭✭
    Oh well in that case, good luck trying to find whatever works best for you. :)
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • KatOxymoronicKatOxymoronic Calgary, AB, CanadaPosts: 23
    I am a type 1 diabetic and though it had been 7 years this February since I was diagnosed Its still a major issue for me. The hardest part, I think, is that in about a year I'll be heading to university and I have no idea how I'm going to deal with not only the diabetes itself but the high cost of insulin. I'm sure I'll figure it out but its good to find a place where I can voice my concerns about my illness. I realize they diabetes is nowhere near as chronic and debilitating as some of the other illnesses out there but sometimes it just becomes so overwhelming. On top of the rest of they by family doesn't understand it at all. All of them insist I don't eat anything sugary and if I had a nickel for every time I was gifted a cure/manage your diabetes cookbook I would be rich. However, recently I watched  the video that Hanna Hart uploaded featuring her diabetic sister and it gives me hope that people may start to understand the difference between the different types of diabetes. Anyway, I wish you al luck in dealing with your illnesses!
  • turdl38turdl38 Posts: 976 ✭✭✭
    My step-dad has an insulin pump.  He's had type 1 diabetes since he was 6 and is now 63 (give or take a year?). Good luck.  You'll figure it out.  Also, if your family is open to it, a lot of hospitals and clinics have social workers who have a big part of their job being to explain illnesses to families.  Might be worth a shot?
    Difficult does not mean impossible.  Very little is impossible if you want it badly enough.
  • qog314qog314 Posts: 77 ✭✭
    I have fibromalygia...Pretty much every symptom I have can be explained away by fibromalgia, so that makes it somewhat easy for me to explain to people even though I have a huge variety of symptoms.
     
    The thing with chronic conditions is, it's not something that goes away. It's something you deal with every day and you have to manage it so you can live the best life you can.

    I hope everyone who's posted here has managed to find something that's helped...Personally for me I've found doctors, even/especially specialists to be completely useless. I've seen a holistic doctor (a DO I think they're called?) and while he was nicer and more understanding, he still got to a point where he didn't know what to do (we tried a ton of stuff, though and a lot has worked for other people). 
    I started seeing a massage therapist last year and it's the only thing that has even begun to help. 
  • mutantninjalapenomutantninjalapeno Posts: 110 ✭✭
    i have duchenne's muscular dystrophy. i'm sure some of you've heard of it. basically i lack the gene dystrophin. which instructs your body to make muscle, and as a result i get weaker over time, starting with the limbs and working it's way in. my lungs are so weak that i require a ventilator 24/7 and a tracheotomy. my back's so weak i've got terrible scoliosis, and thanks to that, coupled with how little i move and muscle contractures, my back constantly hurts and nothing helps but heavy painkillers. i can't walk, or lift my arms, so i require someone to be with me 24/7. and the disease will eventually kill me, when my heart gets too weak. life expectancy 20 years ago was early 20's, but now, thanks to better quality of life and knowledge, that's changing fast. i'm 29 and have friends with the same disease who are in their 40s. i know even living to 40 is still bleak, especially with my condition - and it'll worsen - but i have a good life. i don't get out much, but once i'm on my computer, i can draw, write, read, talk with friends, and spend obscene amounts of time on tumblr and youtube. it's a tough life, but a good one.
  • rkent100rkent100 Posts: 39
    I have a bucket list of mental disorders. I have Maniac Bipolar, ADHD, Oppositional defiance disorder, OCD, Trichotillomania, and a condition I can't spell but means heavy menstral cycles. Its not severe as some of the conditions previously listed but by no means is it a walk in the park. Every day is a struggle but every day I am grateful to be alive and am grateful that I have a chance to be part of this wonderful community.
  • MoundfreekMoundfreek Colorado SpringsPosts: 17
    Like Hank, I have ulcerative colitis. In a way, that's how I got started in the Nerdfighter community (I saw his ulcerative colitis song and thought it was identifiable and hilarious). I'm fortunate in that I manage well. I have something called flare-ups about every 3 years, but so long as I watch my diet, I do okay on immunosuppressants.

    I'm reading your personal stories. You are a brave bunch.

    I am a professional ecologist with ulcerative colitis .... but am not Hank. Books and nerds are my favorite.
  • BriRose23BriRose23 MarylandPosts: 1,584 ✭✭✭
    Hello lovely people! 

    I have fibromyalgia. Basically everything hurts all the time. I also have GERD, which is like chronic severe heartburn, and I have a sub type of IBS called Splenic Flexure Syndrome. 

    I go through phases of feeling okay, and feeling bad. Usually once one thing flares, everything else flares too and I just feel like crap for a few days. 

    A lot of this has been recently diagnosed so I'm still learning how to deal with it all, but I'm getting there! Diet is extremely important for all of my illnesses so I'm just trying to work out a diet that works for me! 

    Good luck to all of you and remember to stay positive!

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • RialVestroRialVestro Posts: 6,335 ✭✭✭

    i have duchenne's muscular dystrophy. i'm sure some of you've heard of it. basically i lack the gene dystrophin. which instructs your body to make muscle, and as a result i get weaker over time, starting with the limbs and working it's way in. my lungs are so weak that i require a ventilator 24/7 and a tracheotomy. my back's so weak i've got terrible scoliosis, and thanks to that, coupled with how little i move and muscle contractures, my back constantly hurts and nothing helps but heavy painkillers. i can't walk, or lift my arms, so i require someone to be with me 24/7. and the disease will eventually kill me, when my heart gets too weak. life expectancy 20 years ago was early 20's, but now, thanks to better quality of life and knowledge, that's changing fast. i'm 29 and have friends with the same disease who are in their 40s. i know even living to 40 is still bleak, especially with my condition - and it'll worsen - but i have a good life. i don't get out much, but once i'm on my computer, i can draw, write, read, talk with friends, and spend obscene amounts of time on tumblr and youtube. it's a tough life, but a good one.

    I actually have not heard of that. I noticed you said you can't lift your arms and have a helper with you 24/7. I'm wander weather or not you actually typed this yourself or just dictated what you wanted to say to your helper. There are a few grammatical and spelling errors which isn't that bad if you were able to type this yourself. I imagine if you did type this on your own that you only needed your helper to place your hands on the key board so you could do the rest. If that's the case it's pretty impressive you were able to type at all with the way you described your condition. Doesn't look very profession if you had someone type for you though.
    Ni, peng, nee-wom! Ecky, ecky, ecky, pakang, zoom-ping! Baa weep grahna weep ninny bong!
  • thefinitemethefiniteme New EnglandPosts: 9
    edited April 2015
    Chronic illness sucks. It's so limiting and so few people are understanding about it. And trying to find a way to be a useful person is difficult. But the fact that Hank Green can be Hank Green even though he has ulcerative colitis makes me feel much more hopeful. I guess you just have to learn to treat it with humor.
    by thefiniteme
  • BriRose23BriRose23 MarylandPosts: 1,584 ✭✭✭
    @thefiniteme I agree. I think the most important thing is to learn what you can and can't do and to find way to get around those limitations. We can all find ways to involve ourselves and do what we want to do! :)

    There is no darkness as dark as great light corrupted - Lauren Kate

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  • cookiefiendcookiefiend Posts: 114 ✭✭✭
    I don't agree! I'm a sibling, so maybe I don't get it as much as being a professionally sick person myself, but Hank Green isn't HANK GREEN despite his illness, but because of it. My brother learned things he never would have learned if he didn't have to stay indoors so much. He met people he never would have otherwise met. His illness shapes his preferences, his energy levels, his tolerance for certain activities.... I'm not saying its a good thing that he has it or anything like that, but it's a part of who he is. It's literally part of his genetics.
    In masks outrageous and austere the years go by in single file; but none has merited my fear, and none has quite escaped my smile.
  • BriRose23BriRose23 MarylandPosts: 1,584 ✭✭✭
    @cookiefiend i agree with that too. the thing is that so many people are diagnosed with an illness and they let it get them down, but when you can learn to live with the illness, you can be much happier. When you learn your limitations and are comfortable enough to put yourself out there, like hank did with the song, thats when you start to learn from your illness, and be happy. 

    i hope that makes sense... 

    There is no darkness as dark as great light corrupted - Lauren Kate

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