I was just wondering if anyone else has trouble having a social life and meeting people. I'm not sure if its me or the disease or a combination, but lately I've just been feeling extra lonely thinking about the friendships I let drift away and the bridges I've burned.

I had two groups of friends in college. One group of us I was close with and we actually lived in the same apartment/building/dorm for several years. One group that I wasn't as close with. I kind of drifted apart from the second group as I got sick. The first group and I had a misunderstanding when I decided I wanted my own apartment rather than living with noise 24/7. I didn't intentionally break my friendship with them, but by the time that bridge was burning, I watch it burn with glee. Every now and then I wonder whatever happened to a girl I was friendly with and had originally dated one of my dorm mates, but otherwise I don't give them a second thought. And I had the other group of friends back then, too.

The group of friends I had in high school has been weighing on my mind a lot though, since we were all really close. I never really had many friends in my grade growing up. I was bullied a lot in grade school. By the time I reach high school nobody messed with me because I'd worked out a system of mutually assured destruction. If someone tried to bully me, I'd start a fight and we'd both end up suspended. Luckily it never got that far, a few black eyes and nobody tried bothering me again. Then again, start fights doesn't win you friends.

I did make some close friends in the class under mine, though. Even though I was a grade older than my high school friends, I don't think many of them realized I was two years older until I could buy liquor (by which point we were all in college, but I was 21 and they were 19). For the most part, I'd refuse...but there were a couple people I was close to and trusted. If they wanted a 5th, I wouldn't say no (I was stupid and 21). One of those people (a girl I fancied, no less) managed to extort much more than one bottle from me. She was also kind of my link with a lot of the group. I don't think the rest of the group ever knew the full story (or where the liquor they were drinking came from) but my reaction to the incident was to hell with the lot of you. Irregardless of to the law, I didn't need anyone's death on my conscious. I had already lost a friend to drunk driving.

I don't think I really meant to break ties permanently, in fact I did see them some after that where we used to meet weekly. But being betrayed by someone close to you is probably one of the worst feelings are is. And the girl in question invited me to a party with her a year or two later, which I think was her way of apologizing, but that didn't turn out so well since there were enough hard drugs floating around that if the cops had shown up for a noise violation, I'd probably still be seeing the inside of a jail cell. I politely excused myself after about a half hour.

Then I got real sick with MG and SPS, was misdiagnosed, almost died in surgery and just generally had other things to worry about. Now I just go to work and take classes to try and get a better job and fill the void where I should have a social life. I'm not really sure how to move forward from here. Do I find out what happened to my old friends a decade later? I have no clue how to make new friends.

I was actually invited block parties through a neighbor of someone I met at work, only they lived over an hour away. My parents talked me out of getting back in touch with them as they said I need to find friends closer. In hindsight, friends an hour away are better than no friends at all.

I have a lot to do and need to stop feeling sorry for myself. I just thought getting this down might help me focus more on the task at hand.

Sorry you are lonely. I always had difficulty making friends but did have some good ones even though I was painfully shy. Moving around a lot does not make for a lot of long relationships, either.
I probably would have done the same thing as you when friends were doing illegal stuff. Sounds like they were using you.
Having a life altering disease does kind of socially isolate a person. It's hard to make any plans because you can't tell if you will be able to keep them.
I probably talk to more people since I have been sick, than I did before, but most of them have to do with some branch if medical care.
You are doing the right thing by continuing your education. Maybe you will meet some nice people through that.
Best of luck.

Some old friendships are most likely best left alone. If you really would like to touch base with them, try to find them on facebook. They would probably be glad to hear from you.

You should get involved in some kind of hobby group and try to make new friends.

I was having problems with facebook for the longest time. They somehow duplicated my account, but only put a few of my contacts in. When I finally got through to them they sent me three names from my contact list and said to have them verify my ID.

I was like, its been almost 10 years and you want me to call these people out of the blue, I thought that's the service you provide...

I did notice earlier this evening that they've since unlocked the full contact list to the public. Not exactly the solution I was hoping for, but I guess I can add them now from the account I was locked out of.

I do agree that I need to move forward with my life, but it would be nice to catch up with some people. I need to figure out how to meet new people, though and if there's groups or anything that I can join. I've looked but haven't been successful so far.

As far as being used by people, you are right about two people in particular and I needed to remove myself from that situation, as painful as it was to do. This long afterward I'm not holding a grudge...just wish things could have turned out differently.

I think the reason I'm re-examining where I am in life is that I found out I'm probably going to need my third major operation in about 4 years. So I'm looking at whats going on with me, and seeing other people getting to move on with their lives, while I seem to be stuck in this limbo of health issues that remind me of wack-a-mole. I think the reason I can't sleep tonight is that the reality of the situation is sinking in...which is really bad timing since I have two projects due today and could have used the sleep.

Backward Pawn,

First of all you are obviously stressing about your situation and that is the very last thing that you can do. I know from experience that when I start stressing and getting upset about something the MG really kicks in. Recently I have experienced that stress with the family and Thanksgiving dinners. My family sometimes makes a big deal over who is going to have the dinner and I end up hearing both sides and feel stressed as to who to go with. Seems that no one (i.e. my brother and sister) can all get together because of their extended framilies.

I've never had a lot of friends. In high school there was a group of us that did things together but after we graduated it wasn't long before we all went our different ways. Today the only person I keep in touch with from that era is a friend from my church. We didn't go to school together but my mother always made sure we could get together to play, etc. Other than that I have had two friends as an adult that I have been close to, however after my illness they have slowly distanced themselves. I guess because I can't drive or get around as I once did, I can't meet them for lunch or shopping or festivals anymore. Friends in my life seem to come and go. You meet at work and get along but as soon as the work situation changes you don't have much else in common. I do have three friends that I have meet through work and we keep in touch by email because they have moved out of state.

There are MG groups in various towns where you could meet people with common issues maybe you can look into that. As I said before, please don't stress yourself about this because the results will be much worse than not having friends. In time I'm sure you will find a path to meet people.

Good luck,
Southern Bell

Most churches and hospitals have a support group & meetings for the chronically ill. It would be a good opportunity to meet new people in similar situation. I too fell isolated and lonely but that is on a good day. Most days I am too tired to think about it or have the energy to do anything about it. The last several months, the extreme fatigue is taking a toll and I am sleeping more than I am awake.

kathie

I think this is an issue, no matter what your age is. If you have a medical problem, that causes you to be different, walk different, look different, folks have a hard time getting past that to know you. I wear a hat, I have for years, I have no hair. People are visual, and men are in particular. I try to break the ice by laughter, or saying hello out of the blue and surprising a person. Just do the best you can do with friends. If they truly are a friend, they won't mind the medical issues you have. I know how serious MG can be. Empathy is what is needed to break the ice. I wish you all the best, and a good holiday. ginnie

Hello,
Im new today. I was diagnosed in 2007 with MG, and it has been a pain in my butt. After discovering the tumor from my thymus gland, it ws removed and all has been pretty good. My neurologist moved away, and I havent seen one since. I now have a new Dr. and things are starting to reoccur. Mainly I having eating problems and talking problems. Im very embarrassed to go anywhere because I feel like an idiot when I want to talk and I cant. I went away on a hunting trip last week and had an awful time getting air into my lungs. Not sure if it was from the MG or need exercise. My dr. told me about this miastetic crises and I wonder if that was what I was having. He has started me on imuran now to get my antibody level down. Im just trying to know if htis is going to get worse for me, or is this the worst of it. And to move on enjoying my life ??

Tim,

I'm sorry you're having to go through all of this. I've been there so I know how it feels. If you're having trouble getting air, it could have been a myasthenic crisis. Its probably hard to get help out in the woods, but normally this would be a cause to go to the ER. Its also possible it could have been a cholinergic (sp) crisis depending on how much mestinon you're on.

Just for future reference, I had a cholinergic crisis when I first started mestinon and was put on too high a dose. The ER doc sedated me and had me sleep it off (since my main problem was seizure like muscle twitches). My neurologist at the time was upset when he heard and said they should have given me atropine since I could have stopped breathing while I slept.

I used to get the talking issue quite a bit. I found that coworkers, even ones that didn't know I had MG and thought I had some kind of speech impediment, would be quite forgiving and give me time to get the words out. Family and friends who should have known better would get upset and tell me to get the words out.

The other issue I used to get was a feeling that my eyes were glued shut when I would try and look too many directions too quickly. This was really a problem at meetings at work and I tried to limit my meetings to only those necessary. This led me to skipping an ongoing meeting that had been assigned to me, but I really had no business going to since it concerned a system I had no access to and never would.

Long story short, my being there played into politics far above my grade level and I was gumming up the works and almost lost my job over it. I handled the situation poorly, but this was prior to my diagnosis and I didn't know how to tell my boss that my eyelids had stopped working.

I had my thymus removed about a year ago and the speech issues are pretty much gone and my eyelid problems, while still there, have gotten much better.

Social issues are another matter. Sometimes I feel like I was better off socially as an invalid because then I had an excuse for not having much of a life. Now I can get around, but have nothing to do. Everyone I work with is older and I've had some limited contact with my old friends through Facebook, but haven't really gotten far on that front.

I've tried finding groups to go to, but they're either too expensive or for an older age group. There's a nightclub near me that offers swing dancing and line dancing lessons on Thursday evenings and it says singles are welcome, so I was thinking I'd try that.

There's a couple nightclubs and bars close to me. I think I should be ok going to them and sitting at the bar for a drink or two so long as I give myself plenty of time before I drive. My parents have gotten upset at me for both drinking (with my meds) and going out alone. As far as the first, they're probably right, but if I sit there long enough the alcohol is out of my system; as far as the second, I'm starting to feel like a prisoner sitting at home since I don't have anyone to go out with.

Sorry I got a little off topic, but give the thymectomy time to work and things should start improving. My biggest problem is still double vision, but even that has gotten much better. Its only been a year for me, so I'm hoping things will keep getting better.

Not trying to stop people from replying if you have something relevant as I think important things have been brought up by Tim, Ginnie, me, et al; but have you ever admitted to something you shouldn't have on a message board and then figured, that thread will just die a slow death . Then people actually had useful stuff to say....

If you have useful stuff to add, keep it coming. I don't want to cut anyone off.

If you have something that you think deserves its own thread, please start a new one. Sorry if I seem paranoid, but there is some logic behind me not wanting the thread constantly on top...

If you're curious PM me.