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Isolating From Friends & Family


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#1 Big Dog

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Posted 31 January 2011 - 12:46 PM

I'm wondering if anyone else is having a hard time keeping relationships smoothe. In the last 8 months I've seen both the frequency and severity of my symptoms increase to where I'm only getting a few productive daylight hours. My relationships have suffered as a result because with the people I love, when I do open up, I'm pretty honest. When someone who cares about me asks how I'm doin I give an honest answer. The problem with that is the answer gets ugly sometimes because I'm not ok. I'm 40 years old, just left a field I can no longer perform in, and I'm desperate to find one that I can. Meanwhile our financial situation is predictably decimated so I'm carrying a great deal of guilt over that. My sleep cycle lately has been so far out of whack I don't sleep anymore, I only take naps until one lasts long enough. Then the stress and anxiety trigger the symptoms again and the snowball gains momentum. So when someone wants to know how I'm doing I make sure that I include some of my many blessings because I get tired of hearing myself lement over "poor me" stuff. Instinctivly I just withdraw and take the attitude of "you know I'm not well, just let me save you the trouble of talking to me cause I got nothin good to share". I've used this analogy before, but it's like when a pilot knows the plane is going down he's looking for an open, unpopulated clearing to crash land to eliminate collateral damage. I feel, and believe people would be better off if I kept my distance. I use the words "feel" and "believe" because my feelings change all the time. My beliefs however rarely change and I think that's where the real problem is. And I've explained this to people, and they understand, but my actions don't change. It's frustrating to me because I've got a better support system than anyone could ask for which so few people have and I'm basically turning my back on them. I know someone here has gone through, or is going through the same kind of stuff and I would love any insight or shared experience.

Big Dog

#2 magpie

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Posted 31 January 2011 - 11:25 PM

You should know that a lot of people are in your position. Many people are dealing with the extra stress and anxiety of hard financial times and an uncertain future, without the compounding stress of a neurological disorder! I don't state that to minimize your situation, but to illustrate that you are not alone. You mention a good support system, some of them may have gone through (or are going through) similar times themselves. Asking them how they are, or if they have any suggestions for what might be helpful to you might be a good place to start so you don't feel like you are just a drag to them. Another tactic would be to just fake it for a while. There are studies that have concluded that spending even 5 minutes outside during the day elevates a persons mood, and smiling can release endorphins. I'm not saying to bottle up all your feels, but every once in a while try and push yourself to walk around the block or smile and tell a friend that you appreciate them. A bit cheesy I know, but worth a shot.

On the more medical side, it might be time to talk to your doctor about your changes in sleeping. Sounds like you are an insomniac narcoleptic (maybe you can get into the record books), and a sleep aid might be indicated for a period. Also tell your doctor about your mood or find a mental health professional to talk to. It sounds like you are experiencing a lot of anxiety anticipating a negative reaction from your friends and family. Your turning away from them may be a way of avoiding what you feel is the inevitable- them telling you they don't want to hear about your problems anymore. The good thing about talking to a doctor or therapist is that they are paid to listen to you, so you don't have to feel guilty that you are just dringing them down.

What you are going through sucks, and its great that you have a lot of good things in your life and that you recognize that, but just because your life isn't completely terrible doesn't mean you should feel guilty for not being happy about what you have going for you. Hope some of this was useful to you and that you have some better luck soon.

#3 Linna

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Posted 01 February 2011 - 11:40 PM

I'm wondering if anyone else is having a hard time keeping relationships smoothe. In the last 8 months I've seen both the frequency and severity of my symptoms increase to where I'm only getting a few productive daylight hours. My relationships have suffered as a result because with the people I love, when I do open up, I'm pretty honest. When someone who cares about me asks how I'm doin I give an honest answer. The problem with that is the answer gets ugly sometimes because I'm not ok. I'm 40 years old, just left a field I can no longer perform in, and I'm desperate to find one that I can. Meanwhile our financial situation is predictably decimated so I'm carrying a great deal of guilt over that. My sleep cycle lately has been so far out of whack I don't sleep anymore, I only take naps until one lasts long enough. Then the stress and anxiety trigger the symptoms again and the snowball gains momentum. So when someone wants to know how I'm doing I make sure that I include some of my many blessings because I get tired of hearing myself lement over "poor me" stuff. Instinctivly I just withdraw and take the attitude of "you know I'm not well, just let me save you the trouble of talking to me cause I got nothin good to share". I've used this analogy before, but it's like when a pilot knows the plane is going down he's looking for an open, unpopulated clearing to crash land to eliminate collateral damage. I feel, and believe people would be better off if I kept my distance. I use the words "feel" and "believe" because my feelings change all the time. My beliefs however rarely change and I think that's where the real problem is. And I've explained this to people, and they understand, but my actions don't change. It's frustrating to me because I've got a better support system than anyone could ask for which so few people have and I'm basically turning my back on them. I know someone here has gone through, or is going through the same kind of stuff and I would love any insight or shared experience.

Big Dog




I think I understand (somewhat) how you are feeling. I am a positive person and I am tired of dwelling on my inability to be the person I once dreamed of.
I am 42 , mother of 2 , working full time , married, have 4 dogs and not enough stamina to get through lunch.
It makes me feel so lazy and sad that I feel lazy when I am not- or trying not to be lazy.
When I get home hubby expect me to make dinner. I help the boys with what they need the dogs need attention.
And I love every minuet I get to spend with these guys. I resent having to make dinner for four people all who get home before me and could easily at least start dinner.
And they help when I tell them to but sometimes I just feel like crying when I come home they are expecting me to cook up a dinner and all I want to do is lay down.
My work is suffering too . I will probably never go back to school to get my masters or PhD as I a had planned. I did get my bachelors but I am not making a lot of money. I have gotten to where I cannot handle the finances. And for the past month I haven't had the energy or money to buy groceries.
We have been eating soup and sandwiches for a week now because that is all I can manage. It s like you said I can only have a few productive hours in a day. But mp pme understands or shows any compassion.
I take pro vigil 200 x2 a day and still get sleep intoxication at work. Then I take 1-3 naps when I get home. Leaving time for a tv show and bed time.. Then I awaken every 20-30miutes every night from bizarre dreams that make me feel twisted and scared. I am frustrated and depressed that I am want to be more productive for me and my family , don't know who to confide in ...don't know what to do.....I feel doomed and dying.


#4 Big Dog

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Posted 02 February 2011 - 01:13 AM

I really appriciate the feedback, and Linna thank your for your openness. I know how hard things get at work, I just left my last job and my ego has all its tread showing after that. Like you I'm pretty optimistic about things but I've never had so much trouble with the psychological toll this can take. Just do us a favor and check back in, let us know how your coming along. Today I sent an email to the people closest to me referring them to this site. That way if they want to know about what we live with day to day there are hundeds of first person accounts with mine included. Maybe you could try something like with your family?

BD

#5 Saraiah

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Posted 04 February 2011 - 05:30 PM

Hey BD,

I've got an incredibly difficult time staying - and getting - to sleep at night too, and recently figured out that my circadian rhythm is all out of whack. I can sleep during the day longer than I can sleep at night. I got some information on how to get my body convinced that daytime is daytime, and nighttime is nighttime, and I'm giving it a try. If you think it might be relevant, let me know, and I'll share.

Re: talking to people when you're exhausted, miserable, have emotions going haywire, and are beyond stressed... I've found it extraordinarily helpful to build a community of friends who also have narcolepsy or idiopathic hypersomnia, and to talk with them EVERY DAY. When I get up feeling beyond horrible, those are the people I tell. I remember before my narcolepsy got utterly unmanageable, and before I got a couple of other miserable chronic conditions, that I'd have to work hard when talking with people who would disclose how they were doing with their chronic health conditions. I just didn't get it back then - after awhile, the fact that these friends had such difficulty became "old news" for me. Even though intellectually I understood that they were in pain, or exhausted, or sick in some way *every day*, I didn't get it on an intuitive level. I had to work hard to continue to find ways to empathize, and to struggle with my impatience at times.

*Now it's a whole different story.* Now I'm the one with the incredible challenges that just won't give me a break, and the one facing mostly healthy people who just don't get it. It has helped me tremendously to have people who get it to talk to - people who respond to my "Ugh, I feel HORRID" with "I know what you mean, and I'm so glad I'm not the only one!" When I have a place to get that sort of validation, empathy, and support, it gets a whole lot easier to deal with the people I like and love that don't get it. I do most of my *very necessary* venting and kvetching with the people who intuitively understand because they're living it too. It makes it easier for me to do the "focusing on the positive" with the rest of the world, and in a much more genuine sort of way.

I've constructed my community in a patchwork of in-person friends from an in-person support group, people I've met here and gotten to know, people I met at the NN conference, and people I've met through facebook. If you're far from a narcolepsy support group, facebook can be a great way to gradually get to know people so well that you're eventually burning up the free Skype minutes on phonecalls to real live friends. (No one that I know would ever violate facebook policy and use a pseudonym to protect their privacy [snort] -- that's "hypothetically" a good way to go if you need a community and you don't want to broadcast your diagnosis to the *entire* internet.) Amongst innumerable other internet options for PWN community, if facebook appeals to you, there's a facebook page called "N.R.G. (Narcolepsy Resource Group)". If you go there and send an email to the page's administrators asking them to introduce you to other PWN, you'll quickly amass a ridiculous number of PWN facebook friends.

However you find the people who get it, go find them. My experience is that when I know that there are people *somewhere* who understand my life, dealing with the rest of the world is a lot easier.

#6 SubtleGrace

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Posted 20 March 2011 - 12:23 PM

I basically have no relationships other than my kids. I don't have the energy for one thing, and I don't think I can go through explaining how this illness works and how it affects me. It makes having any kind of normal social life impossible. For one thing, the stress of even thinking about a social engagement sends me to sleep, much less showering, dressing, finding a way to the location and actually engaging in the social activity!

I got very depressed last year about this time because I felt like the rest of my life was going to be spent in my bed. Like, my bed was my life. Don't get me wrong, I have a great bed, I just don't want to be in it (alone) forever.

#7 AckDreams

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Posted 25 March 2011 - 01:48 AM

I relate so much with everything said here. I'm really in an identical position as Big Dog except I don't have good supportive friends with any interest in understanding my condition. Which is why reading the following was a good reminder for me:
"I just didn't get it back then - after awhile, the fact that these friends had such difficulty became "old news" for me. Even though intellectually I understood that they were in pain, or exhausted, or sick in some way *every day*, I didn't get it on an intuitive level. I had to work hard to continue to find ways to empathize, and to struggle with my impatience at times.*Now it's a whole different story.*"

Right now I'm nearing the end of my 1 month break from all medications and I have spent about 22 hours a day in bed sleeping, sleepy, watching TV, and reading on the internet. It's maddening. This is the first time I have ever been off of all medicines and the first time I couldn't drive my car, and this was the first time I ever realized just how very severe my narcolepsy is. This experience has also shown me just how truly dependent I am on my medications but also how dramatically all those amphetamines effect my personality. I like that they make me awake and allow me to function, but I right now-off those meds, I am LOVING not having the racing heart beat pounding in my head all the time.

I really need to be out in the sun, socially interacting with people, eating and sleeping on some kind of schedule, and spend less time in bed - - it's just that right now.... I can't. I just can't. I try but by the time I'm dressed and ready to go, my dogs leashes in hand -BAM- exhaustion and the undeniable urge to sleep! It sucks and it's depressing, but I also feel defensive about those feelings because for years depression was seen as my diagnosis, not one of my symptoms. The worst part is, I find I have sooo much time to focus on pity party thinking that just doesn't help. Being this isolated makes it hard to distract myself from focusing too much on problems. I think, no matter what new medication regime my dog chooses for me I need to make sure I never allow myself to ever get this isolated again. It's too depressing, it's unhealthy. My dogs are even bored of my, I've watched every rerun of Law and Order on TV, and I have mastered Facebooks Farmville..... uggg I need to get a life - - - this has been the longest month EVER!

#8 ImSleepin

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Posted 02 April 2011 - 09:38 PM

I'm a little distant from people, too. I have a couple co-workers that know about the the narcolepsy, and I am able to confide in them when I'm having a "bad" day. Even some of my closest friends have no idea about the narcolepsy. I have one girl friend that I worked with at a different place who knows about it. I felt better because she told me that her cousin has narcolepsy, too. My boyfriend, parents, and siblings know about my condition, but it'd be nice to be able to tell my friends and to know pwn in real life -- outside of the NN website.

I work in a bookstore and I rung up a customer once a long time ago for a dummies guide to Sleep Disorders. I wanted so badly to just open up to her, but I didn't want to cross any boundaries, make her uncomfortable, or just come off as rude. All I could say was that it looked interesting, maybe I would take a look at it, too, and wished her good luck. She said thanks, she hoped it would help her, too.

#9 TiredAgain

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Posted 22 October 2011 - 08:18 AM



I think I understand (somewhat) how you are feeling. I am a positive person and I am tired of dwelling on my inability to be the person I once dreamed of.
I am 42 , mother of 2 , working full time , married, have 4 dogs and not enough stamina to get through lunch.
It makes me feel so lazy and sad that I feel lazy when I am not- or trying not to be lazy.
When I get home hubby expect me to make dinner. I help the boys with what they need the dogs need attention.
And I love every minuet I get to spend with these guys. I resent having to make dinner for four people all who get home before me and could easily at least start dinner.
And they help when I tell them to but sometimes I just feel like crying when I come home they are expecting me to cook up a dinner and all I want to do is lay down.
My work is suffering too . I will probably never go back to school to get my masters or PhD as I a had planned. I did get my bachelors but I am not making a lot of money. I have gotten to where I cannot handle the finances. And for the past month I haven't had the energy or money to buy groceries.
We have been eating soup and sandwiches for a week now because that is all I can manage. It s like you said I can only have a few productive hours in a day. But mp pme understands or shows any compassion.
I take pro vigil 200 x2 a day and still get sleep intoxication at work. Then I take 1-3 naps when I get home. Leaving time for a tv show and bed time.. Then I awaken every 20-30miutes every night from bizarre dreams that make me feel twisted and scared. I am frustrated and depressed that I am want to be more productive for me and my family , don't know who to confide in ...don't know what to do.....I feel doomed and dying.


Provigil did nothing for me, I'm on Adderal and it helps a little it was more at first but your body gets used to get. My Dr. wont up it yet even though it has been two yrs I started at 10, 20 and now 30, because he said I'll be on it for the rest of my life.

Some times the only way to get help is to stop doing things for everyone else. I have a 14 yr old son and I get so grouchy and nasty becuase I do everything through this tired glaze state. So last week when I did cook I cooked enough so we could have it again the next day and I made him heat his own up and I had him do his own laundry. So this week he made sure he had all his laudry down stairs so when I went to do mine his was there (which may be a little thing but to me it's a big help and a start). But also cooking extra is great and I'll cook the meat two different ways like a did pork chops in a pork gravy and I did some just in a frying pan so it was like have a different meal the next day.

Anyway talk to you Dr the meds are not helping you enough. Mine helps me get through my day, I have given up on the thought of feeling fully awake and aware. But I have to be able to function I work in a school system with special needs children and there are times when a child is in crisis that I find myself awake and functioning fine, but afterwards my mind is drained and my body is done, but I'm so glad that I can still help these children and I think with that little help for the Adderal I won't be able to. The reason I am telling you this is I believe there is a med out there that can help everyone it is just finding it. I have heard of people that feel great on some meds and don't know if I'll ever find that but as long as I can function it's better then nothing and I hate hearing that you feel doomed and dying, don't give up fight for some relief and make your family understand. Copy articles etc.. and have them read them, copy and print things off of this website.

Good Luck

#10 Mrs. Bento

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Posted 22 October 2011 - 07:16 PM

The people closest to me are in denial. When they're actually recognizing that I'm not well they try to fix me, do things for me, or suggest ways to get what needs to be done. Like me they have struggles with my N it's unpredictability, and how it effects our daily living together. My friends are nonexistent. My 3 year old twins are my heart and soul. Their innoscence makes me melt and I do all I can for them.