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I'm Back- Been Really Sick- Found Answers


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#1 sleepless sleeper

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Posted 14 November 2008 - 05:34 PM

I added the info in my personal profile about the train leaving the station without me..., I've posted that I get WAY off on tangents, etc. I've also made a post where I discussed what used to be and how depressing it is to accept the changings caused by N. From that post I realized that I expected the worst from people, and I was really ashamed. I've let people on NN know that I get so damn lost in my head that I really don't know what I'm talking about until it's over and done with. N has put me in bed at least half the day and the other half I'm a zombie and I assume that I operate on what's called "automatic behavior" because in the evening I never remember what's happened that very morning. I have tried so very hard to not subject myself to self pity parties, but it's so hard. N has isolated me from the world, thus also my family has been isolated. I hoped that people here understood that. I was floored to get back on this website after a month of absence and see that everyone just removed me as a "friend."

Last month, I emailed and asked someone if I could go back and delete a post because I know some of my answers get far out there. I can't do it because I have to live everyday with what I say so I may as well live with what I type. I hope that everyone can give me the benefit of the doubt because I am going to stay on this site because I have no other outlet.

One of my last posts I tried to go back and explain what I was trying to say because I realized upon rereading my post that I sounded as though I were bragging and just obnoxious. I can live with obnoxious but not the bragging. I used the term "sleep drunk" because I get so lost in what I'm trying to say that it's like being drunk. We all know how drunks can get. Most likely most of us know what it's like after the "drunk" wears off and we realize what's been said and it's not at all what we ever thought. FYI - regarding that post - and I'm surprised that noone that takes stimulants has experienced this (because noone posted a reply): My husband made several comments about me not eating with the family. I finally realized that I was not eating a well balanced diet even though my family was. Why did I not notice? Because I'm a dumbass that can't pay attention to anything and remember one thing from one day to the next. It finally occured to me that I'm binging on junk food at night because I"m starving because I don't eat during the day. I don't realize that I'm even hungry because it seems to be the dextroamphetamine, and by the time that it wears off in the evening I eat what is immediately available that I don't have to prepare because by then I'm so damn tired that I can't even stand up to brush my teeth let alone put something in the microwave. The past month and a half I won't even get out of bed to go pee and will wait until the very last minute because I don't want to move. I've done better by forcing myself to eat during the day, and it has helped tremendously with junk consumption. I don't feel any better at all, though, which is something else that I talked about. There's almost no incentive. This is nothing that I would ever even think of as a bonus and that would make me a better person than anyone else. I have always been thin, and as a kid I could eat anything. I've had friends make comments that I'm so lucky that I'm skinny, but my reply to them is always, " at least you look like a woman." When I was 17, as I've mentioned in another post, I used to train a lot and I was in really great shape, but my father told me that I look like a boy. If I could be what other "normal" women consider to be "overweight" then I would be happy. I'd give almost anything to not have a stick figure. I do not take indulgent pride in my looks at all. Two days ago I told my husband that I feel like my body is rotting because of this horrendous disease. That is an awful feeling. And it is true. So is my mind because I have so much alone time in there.

My insomnia and my N have separated my husband and me from being in the same bedroom. I have felt this separation more deeply than I probably should have because my hubby loves me so very much. About the same time as my last post here, I began thinking to myself that he would be so much better off without me. I'm not talking about suicide.. I could never do anything like that. Just if the kids weren't here he'd have a better, normal, unisolated life if I were to pack my bags and just disappear. Also, for the past 2 1/2 months I"ve had a low grade fever, and if you read some of my posts you'll see that, because of the bad experiences that i've had with doctors pre-n, I will not go to the doctor unless I think that I'm dying. Right after that (thinking he'd be better off without me) I was diagnosed with stage 2 melonoma. It didn't end up being a big deal. I had an incredible surgeon that was able to clean up the biopsy site and get rid of all traces of cancer (found out just yesterday) without even doing a skin graft. We thought it was going to end up being stage III (I lost a 9.5 cm x 3.75 cm x 2 cm section of my left arm, which is nothing compared to what some people lose) and I felt so guily about thinking my husband would be better off without me. It was one of two times that I had ever seen him concerned about anything, the other time our 2 year old took off in the middle of the night thinking it would be fun to go for a walk without telling us. Even then hubby wasn't concerned until 20 or so minutes passed. The moment he looked up melonoma and survival rates he had this look come over him that I had never seen, and I felt like such a heel. I can't believe it took that kind of scare to get me to see past my world and give me the ability to see how much he cares. I know other people have much worse, but my huge divet has ended up being a blessing. This is NOT a plea for pity as it is nothing at all to pity. I also found out yesterday that I've had some kind of low grade infection (no kidding- 2 1/2 months of feeling like last year's garbage) and began taking antibiotics. Hopefully getting this treated will get me out of bed a little more and give me the ability to spend more time with other human beings. I'll still have far out there thoughts, and I'll still get way out on some way out there tangents, but give me the benefit of the doubt and know that this disease has really kicked my rear. I don't want to be isolated here the same way that I am in everyday life. I haven't always been such a freak, but you can know put an A+ next to my name on the freak list. I do have a warped sense of humor. I still will not call myself a PWN. I still will start telling stories because I can't see me ever getting back the ability to control my thoughts. I still will get my sleep drunks and not realize it. And I still will feel like N has ruined my life. I can't believe that everyone took me off their friends list, but if that is the way it has to be, then I'll accept it and just keep posting anyway. But I will always be a fellow narcoleptic.

#2 Marcianna

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Posted 14 November 2008 - 11:53 PM

I dont know if you know this but we have had some issues here with the site for a bit. All better now.
It is entirely possible that you were not removed from anyones friends list, the data just may have been lost. It happens.

Those of us who know you well, Know that you get off track. And that is ok. We are used to it and dont get upset now that we realize how "out there" you can be.... (lol... no offense, I do it too!) Anyone who does not know you that well will simply have to learn like the rest of us did! It will be ok. Not to worry.

I am sorry to hear your going through so much lately. I hope you get better soon!

You will always be welcome here!

#3 dogdreams

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Posted 15 November 2008 - 12:10 AM

I know how you feel.

And I think Marcianna is right...my friends list disappeared too. It was a forum bug.

Please feel free to post anytime. I think now that I've discovered the "read new posts" button, I read them all. So you're guaranteed at least one pair of sympathetic eyes. smile.gif

#4 Lais02

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Posted 15 November 2008 - 12:24 AM

I hope you're doing well now that you had the melanoma taken care of. I can't imagine how scary that would have been and now the infection too! If you can learn something from these experiences it might be that you shouldn't doubt all doctors. Now I completely understand why you do though!!! We've all been through much more bs with doctors than most people ever have to go through.

Of course you're welcome here. As Marcia said there were some weird things going on on here lately, so that could be what happened with your friend's list.

Some of my posts were similar with the whole going off on tangents thing... hopefully I think I'm getting better though smile.gif

As far as the appetite goes, I do have a very similar experience. When I was in 3rd grade I started taking ritalin for the ADD that I don't think I ever had lol. I took stimulants from 3rd grade through some of high school. I NEVER wanted to eat anything. I even fainted a couple times in grade school. People thought I was anorexic or something, but I was chubby so they gave up on that theory! I noticed that as soon as the meds wore off each day I would binge on junk food. What else was I supposed to eat if I was just a little kid and mom wasn't making dinner yet? smile.gif I'm sure that's where some of my weight problem was coming from. I don't have that problem anymore though, so I don't have a solution and it was too long ago for me to remember anything that worked. I just can't remember what if anything I did to make sure to eat. I kinda think that I just didn't eat... but I don't suggest that for you or anyone else of course. I'm sure someone else has had a similar experience and will share their thoughts. Have you asked your doctor about it?

#5 Lais02

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Posted 15 November 2008 - 12:26 AM

QUOTE (dogdreams @ Nov 14 2008, 11:10 PM) <{POST_SNAPBACK}>
I know how you feel.

I think now that I've discovered the "read new posts" button, I read them all. So you're guaranteed at least one pair of sympathetic eyes. smile.gif


That is by far the best button on this site! smile.gif I could never figure out how to keep on track here until I found that lol.

#6 sleepless sleeper

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Posted 15 November 2008 - 08:50 PM

If you haven't already noticed, I haven't gotten out of this pity funk for quite a while now. I don't think I know how to anymore, but hey, at least I can sit at the computer again! laugh.gif

I used to get so sick of people who complained and whined and cried and... and now I are one. Would everyone please help steer me back on track with my posts. I can say that I will definately appreciate any help instead of getting offended by it. Unfortunately, I believe that I've lost a few social graces since I've isolated myself, and I know that situation won't get much better any time soon. As I said in the original post, I still have a warped sense of humor, and I've really tried to not be so sarcastic or teasing as I've gotten older. It's going to happen, however. The post that I made in regards to how to handle all the SPAM the site was receiving shows a side of my personality that exists, and it will continue to exist; I don't, however, wish to offend anyone. Just please let me know. The posts that I have made concerning how to handle doctors reflects my business background and extensive experience with doctors, insurance companies, et al. None of those posts concern me. I have always asked rhetorical questions, and those questions have always produced the best brain storming results for any problem. Those will happen. They probably will get off topic a bit, although I usually can reign those into a full circle. The term "parasitic conjoined twin" came from a show on the Discovery channel that aired not that long ago. I found the concept fascinating, so no, that was not my morbidity. That is definately something that I would want to have pointed out to me so I can at least let you know that I'm not using someone else's medical condition as a joke. I am the last person that would do that. Have you guessed yet that I am a sensitive person? I am, however, very sensitive to others, and I sincerely hope that it shows. Being thoughtful of others is probably more important to me than it should be. Actually, so much so that it ends up costing us money. The bear story is true, but since we've moved here I have become obsessed with bear and lion attacks. As I stated in that post, I will NOT go into the woods alone or with just my kids. I think the fear of being attacked while out in the wilderness is most likely tied to having more time alone in my head than I need to have. Then again, the attacks do happen, and they do happen around here. See, there I go, but I caught myself.

I have to know, though, if anyone else has what I call sleep drunks. I assumed that most people with sleep disorders did. Please reply to this!

You know, it was just a very few years ago that I would call people out of the blue and say that I had
cooked way too much and come on over, or that it's really chilly out, pack up the family and head over for hot tea, you get the idea. I never was bent out of shape when friends would stop by without calling first, especially the ones with kids that could keep mine entertained. The more the merrier. My big thing was food. Cook for the kids. Everybody happy and full. The louder the rugrats were the better. I had friends over to just watch a show with once a week while the kids killed each other outside or in their rooms, and once a week my friends and I always played Scrabble. Religiously. It was really hard to accept not being able to do that anymore, or not being able to cook fabulous meals that satisfied everyone on a moments notice. My friends have now learned that it doesn't even matter if they call first, that it's just better to not come over. I am too tired to worry about what my house looks like anymore. Etc. I don't really understand how N can be so bad that just the thought of moving exhausts me. I've worked in our garage today for about one hour total. This is a huge task as I've dumped everything into our garage that accounts for years of "life." (I mentioned in previous post that I thankfully realized that I had begun hoarding) I make sure that I spend a little bit of time most days out there so that I am at least somewhat productive, and I make sure that I don't over do it because I will tire out so badly that I won't do anything else for a couple of days. I think I am getting better. I want to ask others on this site questions about their daily life, and I'll begin making posts in the next few days.

*PLEASE* although I don't expect it from y'all, please do NOT post that I'm depressed and I'll get more done when I "get over it." Hell, yes, I'm depressed. Who wouldn't be? N and my other ailments do define my life, and I don't like being enslaved, which is how I feel. The past two months I've felt like I'm short of being a quadraplegic. Of, course, I know that is an exaggeration in my head, but it's difficult to see the majority of my muscles atrophing, actually, I don't know what muscles aren't, and for it to be this progressed at a relatively young age (just turned 41.) It has been difficult to even move lately, and this was before I found out about the melonoma. I wasn't kidding about not getting up to go pee. I honestly feel like I just can't do it. The lack of use of my body has caused a spiraling affect. I take Celexa already, and it helps with cataplexy, paralysis, and hallucinations. If I don't take it I become truly depressed, so I've lucked out that I'm already on it. Just as I started going to a gym, I have had a set back (explained in this original post), but my doctor says that it should be okay to go back in a minimum of two weeks, which I look forward to. It is embarrassing, though, because I have mild cataplexy attacks between sets. It is an embarrassment that I can laugh at, though, and it won't stop me from going. It is really pathetic using only 15 - 30 pounds of weight on machines that probably pull half the weight for you (pulley systems), but ...

Okay, I just realized that I'm doing the same thing. I won't go back and edit through replies before posting because I'll get to bogged down trying to figure out where I got off track, and my brain will start hurting. Seriously.

Summarizing: Thanks to you that replied. I can't express enough how much I (obviously) needed it. Marcianna, thanks for saying that you're able to see how terribly I get off topic. This is the type of info that I need, and I will not be offended. What is offending is someone not saying anything. I desperately need to re-learn how to have a discussion. I have always strayed a bit, but the straying was actually logical and tied back.

After this original post, I just about choked on a huge "OH, S***, what if the friends' list automatically deletes or if something happened?" Then I followed up with the self pitying "no way." Here's to egg on my face. Anyone have ham and cheese?

#7 Chuck Z.

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Posted 17 November 2008 - 03:04 AM

OMG - If It weren't 3am and I wasn't working on my 2nd dose of meds, I'd ramble on longer than you and go off on more tangients than a high school geometry teacher on crack, but i digress!!! I swear, you are my long lost twin!!! Sleep drunk!?! Uh, duh, YA!!! "Sleep Drunk" is my middle name! I'm in a perpetual state of sleep drunkeness -- geez, I have to second guess what I had for dinner 8 hours ago! I can't remember anything, I stumble around because I'm constantly micro-sleeping and losing track of even where the ground is, and for the life of me, I can barely write this because I'm so excited to find such common ground with someone else with my same complaints and my brain is short-circuiting and my thoughts are jumping around so much!!! And to boot, I'm skinny as a rail, binge eat at night cuz I don't "bother" eating during the day!!! (Glad to see you back!!!!)

#8 sleepless sleeper

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Posted 17 November 2008 - 08:39 PM

QUOTE (Chuck Z. @ Nov 17 2008, 01:04 AM) <{POST_SNAPBACK}>
OMG - If It weren't 3am and I wasn't working on my 2nd dose of meds, I'd ramble on longer than you and go off on more tangients than a high school geometry teacher on crack, but i digress!!! I swear, you are my long lost twin!!! Sleep drunk!?! Uh, duh, YA!!! "Sleep Drunk" is my middle name! I'm in a perpetual state of sleep drunkeness -- geez, I have to second guess what I had for dinner 8 hours ago! I can't remember anything, I stumble around because I'm constantly micro-sleeping and losing track of even where the ground is, and for the life of me, I can barely write this because I'm so excited to find such common ground with someone else with my same complaints and my brain is short-circuiting and my thoughts are jumping around so much!!! And to boot, I'm skinny as a rail, binge eat at night cuz I don't "bother" eating during the day!!! (Glad to see you back!!!!)


THANK GOD

I kiss the ground you walk on. I guess that you, too, have insomnia. I'm really sorry.



Do y'all think dextroamphetamines can make you neurotic? I'm starting to wonder if that's what's going on with me. Psychotic may be the appropriate choice, but then the old saying, "neurotics build castles in the sky; psychotics live in them," comes to mind, which would definitely place me back in the neurotic category.

And to think I did not start taking Adderall... Ahhh, all the screwed up thinking that could have been.

I cannot express enough how much I need this website and everyone of you. I'm already beginning to feel a bit more calm.

#9 chimbakka

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Posted 23 November 2008 - 10:01 PM

I was just diagnosed, and right now i'm only taking modafinil. I don't have benefits, so i only take it wheni have to work. the days i dont take it... well if im not sleeping in a bed im sleeping while i walk. i talk drunk, i get lost in stores if my fiance doesn't "watch me". It's like im a lost puppy following him around all day... i crash carts into people and things, i constantly drop things, words dont come out right, i sound like an idiot, i ramble on and on, my thoughts fragment and i get sort of a wierd detachment from my body... things like "i wonder what would happen if i jumped out of the car", NO i've never jumped out of a car and im "awake" enough to realize it and not do it, but it's almost like the lack of care you get when drinking... im there enough to know not to do stupid things, but i do wonder/think/get the urge to do stupid things. i can also get depressed and detached from my mind in a warped/bad sort of way, it's hard to describe. It happened more when i was a teenager. i thought i had depression and anxiety, and was diagnosed with "situational anxiety" but well who the hell living with these symptoms with no answers WOULDNT be depressed/anxious. also, it was wrose at school and well again walking around with that many people and bells and stuffy rooms... makes me anxious even now just thinking about it.
off track? wait i did have a point somewhere.



#10 sleepless sleeper

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Posted 24 November 2008 - 06:33 PM

I was just diagnosed
It's a good thing that you found this site. I'll be here off and on.

i'm only taking modafinil.
It's great it's working for you.

if im not sleeping in a bed im sleeping while i walk. i talk drunk, i get lost in stores if my fiance doesn't "watch me". It's like im a lost puppy following him around all day... i crash carts into people and things, i constantly drop things, words dont come out right, i sound like an idiot, i ramble on and on, my thoughts fragment and i get sort of a wierd detachment from my body...
it's almost like the lack of care you get when drinking... im there enough to know not to do stupid things, but i do wonder/think/get the urge to do stupid things. i can also get depressed and detached from my mind in a warped/bad sort of way,
it's hard to describe.
You don't need to worry about describing it any more than you already have. I soooooo know what you are experiencing, and others on this site also do. It's awful that anyone must go through this, but at least you've found others that also do.

i thought i had depression and anxiety, and was diagnosed with "situational anxiety" but well who the hell living with these symptoms with no answers WOULDNT be depressed/anxious.
This is an awful possible consequence of this disease. I can't give you any words of wisdom on this except try to stay strong. At least now you know that there is something really going on and you're not a complete spaz. That's what I call myself - I'm not calling you a name.

wait i did have a point somewhere.
Hey! This is my mantra! I love you already, as will everyone else here.

#11 chimbakka

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Posted 24 November 2008 - 10:24 PM

LOL
this site has been very helpful already, it's nice to be able to rant and read about others' experiences as well smile.gif
and yes i call myself a spaz too LOL