Friends/friendships

[HopeSprings]

Do you guys have any friends left? If so, how do you maintain these friendships? Usually this requires interaction, going out etc. I have so many limitations, so many adjustments to make to my environoment to feel somewhat comfortable (no bright lights, no crowded places, no too much visual stimuli, temperature just right, no perfume of any kind allowed etc. etc.). I feel so messed up in the head, have trouble focusing my eyes, trouble thinking, sometimes it's hard to even speak. I don't feel like interacting - it's too much work. At the same time, I get lonely and wish I had more friends in my life. I have a few close relatives who seem to understand (sort of) and I force myself to do things with them - but it's a major effort. Just wondering where you all are with this?

[hholmes13]

Hi Naomi, I'm still sort of new to this whole dysautonomia thing, but I know exactly what you mean. Most of the time, it takes all my energy just to get through the day and I just want time alone to try and recuperate from my day. It does get lonely though. One thing that has been hard for me was my best friend moved across the country while I was in the middle of being diagnosed. It has been really hard having her gone and dealing with this stuff. I was off of work for 6 weeks. In that time, friends would come by and visit once in a while. Now that I'm back at work, I can drive again...but it's still hard to find the motivation to get out and do stuff. I have a hard enough time just getting through work. The few people I do hang out with are wonderful and helpful though. I still feel isolated a lot. It has been so nice to find this forum! A lot of the time it feels like people are "over" with me being sick and think I should be fine now. I'm hoping this condition will eventually go away, but I've been trying to make them understand that this may be with me for the rest of my life.

[RockiesGirl]

I feel it too Sometimes I just want someone to listen, to talk to, to be a shoulder, but to others it seems like 'old' news. They don't seem to understand that I do not want to go out because I do not have the energy. If I do go out, sometimes it takes days to feel like my old crappy self (to quote someone else on this site). It's always like, we won't do much... Not doing much for others is sometimes like doing a heck of a lot for me. When I was at my worst, even the thought of chewing gum exerted too much energy. So, my girlfriend thought she would be nice this weekend and bring the party to me.....but she didn't bring hardly any food I could eat and left my house a mess. She invited people I hardly know & I was embarrassed by my shaking. I know she was trying to be nice, but.....

Suffice it to say, I am having troubles with friendships too

I am soooo Thankful for the people I have found on this site At least I can type, read and listen to others who seem to be going through what I am.

[icesktr189]

I have the same problem. I will be 22 in a couple days and feel like I am missing out on everything. Thank gosh for my fiance and daughter.

I have horrible trouble being around people. I went to a friends get together last week and had to leave after.an hour. I couldnt focus at all, I was so dizzy it was hard to look at anyone in the eye( I keep having to look around) and.everything seems distant and.hazy. My vision is very messed up with pots too.

[lieze]

I haven't even tried to do family get togethers lately because it just seems too complicated.

I almost need the time my family is gone to just rest and recoup, have quiet.

I do get sad at times and feel like I'm missing out.

Most of the time though I just get into the groove and try to make the best of it.

I still dream of getting back to a somewhat normal one day or finding some sort of routine that works for me.

As my kids get older I'm sure things will change.

[rmlyonsfamily]

This has been one area that really bothers K. Before April 12th (the day this got out of control), she had lots of friends who were always here at the house or she was always with them. Our phone would ring off the hook. She had a quite active social life! But now, because she doesn't have the energy to go out and do things, they've stopped coming around.

The first few weeks after her collapse they'd call to check on her and a few would stop by. But now.... not many at all. She has definitely learned what being a true friend means and has even said a few times that she realizes now how there's a few people that she really didn't "hang out" with much, but they have really became good friends and been there for her.

[Olive]

Before this I had multiple stomach surgeries and malnutrition. So I've been sick for over 4 years. I lost most all of my friends. Someone once said that people didn't want to be around someone that was sick or feeling down a lot. I thought if they were my true friends they would want to be around me more and help out. That's what I would have done if it had been them. I have kept one friend and she is wonderful. Also I started dating my now husband 3 years ago. The night after our first date I was hospitalized and he was up there visiting several times. He has been with me through a lot of surgeries and now this. Never once has he thought about leaving. I'm truelly blessed to have met a man as wonderful as him. Other than those two people I have my mom and dad that support me.

[jknh9]

I find it really hard to do social stuff, too. I also have trouble looking people in the eye and not getting fidgety-- it's the same when I was in classes in grad school. I'm married and so thankful for that because I would probably only talk to my mom if I didn't have my husband. I can't help but feel like I'm missing out since I'm only 26, but I just can't handle going to department functions and stuff. I went to one and left after about 40 minutes because I felt overwhelmed and shaky.

When I started feeling sick and getting down about it years ago, my then-best-friend, who has never faced serious health problems or financial hardship (both of which are issues for me), said "Why do you always act like your problems are so much worse than everyone else's?" I guess that kind of stopped me from wanting to reach out to anyone since.

[maggie]

There is no way I'm going to let pots rule my life! Yes, it was difficult at first getting out and being around people again, but I took small tiny steps, did it a little at a time and then started going for longer times to different places. Now I go to piano lessons, once a week, take a 30 minute dance class, and attend a line dance class one evening, if it's only for 15 minutes that I can dance. I'm still out there talking to people explaining my health issues, I haven't met anyone yet who has not listened or has helped me out when needed. I would never stop trying until I was able to overcome this part of pots. Was it difficult yes, but the end results are well worth it. I hope everyone who has posted here and reads this will be encouraged to try just one thing, even if it doesn't go well, keep on trying until you can, don't give up. There if life at the end of the tunnel.

Maggie

[HopeSprings]

I can relate to so much of what has been said here. I'm thankful too for my husband (who has been there from day 1) and continues to tolerate all of this nonsense day after day. Thank God he's the type who would rather just stay home and doesn't need to be socializing and doing all sorts of activities. Otherwise, he'd be miserable with me. And I am never really alone because I have my two beautiful little children. But you know, I just wish I was well enough to participate in some girlfriend relationships.

[songcanary]

I was glad to see this post because I have been dealing with the same situation. I love all my friends and just when everything was fine and dandy, along comes this stupid illness.

But so far email has been a godsend, and I do see some of my friends once in a while, but nothing like the frequent visits we had before. And I seem to do better at home, it's the going out and about that is the problem. It's an anxiety and fear about having a 'spell' when I'm away from home, because it's happened before. Kind of like the fear of the known LOL. I have no close relatives nearby and only my husband at the house. So I don't want to lose my friends!

I find that most are very understanding if they know you are sick, so I would advise anyone with this to speak up about it and not try to cover it up, without sounding obsessive of course. Otherwise wrong assumptions can be made. I wouldn't want anyone to think I'm antisocial, it's not that way at all. I wish this crazy problem would run its course and we could all get back to being ourselves again

[Yolaclover]

I have really become disconnected from my friends, I don't know how to relate to them now because I am often in so much pain and distracted by the crazy symptoms, especially because I nod my head a lot and then my head hurts and I get lightheaded, it just blows. I am being more proactive though and I do hope my friends will see more of me.

[Neshema1]

This is a sad subject for sure. Maybe I'll share when rested. My sleep-wake cycle is backwards again. It doesn't help matters but when my sleep-wake cycle is better, still have dysautinomia. I wasn't gonna let pots run my life either and I do my best but ya know, some limitations are real & I met Christopher Reeve once & think I try as hard as he did, but I would ask him to get up and run a marathon. Some things are just not going to happen... Today..maybe tomorrow. I had an amazing life. I tried so hard to keep it as it was. Inmay have wanted to keep it, but I'm not sure otters were as determined for me as I was. Ok, I'm not making sense. I better rest. When ya can't keep up, not everyone waits. When the ppl u thought would always be there disappear into the background, it's time to let a few incredible unexpected people ciome into your foreground. Grief & loss is very painful & sometimes the isolation gives us time to figure out what & who matters most. hopefully, we become more after we get over being seen as less. Still, few "get it." im still learning my new life, & I notice little goid things i didnt used to.,yes,,i think the social aspect is abt the most painful part of all this. Feel free to pm. I don't often remember to check, but I'll try. Hugs. -a fellow traveler ps, when you share my journey, u understand my plight. Few others do.