Hows Your Social Life??

[ramakentesh]

Just curious - Id say the one thing that is often most effected by my POTS is my social life. I cant handle walking around in shopping centres because of the fake lighting making it harder for me to balance.

Sometimes when i go out with friends its almost like I cant keep up with what is going on. Im too busy trying to keep conscious to have fun and im sure some people think that i look spaced out which concerns me.

[Ernie]

Hi,

I lost a great part of my friends when I became disabled 8 years ago. I only had my best friend left and my sister. Then when I was in the hospital for 3 months last year I lost those last 2 because I almost died and they couln't handle the situation.

[EarthMother]

When I was able to work all of my available energy was exhausted on my workload. I was exhausted by evening even on days I worked from home. I recuperated on weekends.

Having not fostered friendships outside of work, when I finally did have to leave my career last year, all of my 'social contacts' vanished as well.

Like Ernie even my close friends don't seem to be able to handle my illness. Or they don't have time in their own 'busy' lives. I am blessed I have one friend who comes by every week for a lovely visit and we laugh and joke sitting around on my bed.

I find that healthy people even friends and familly don't really grasp the limitations of a chronic illness. They get upset or annoyed if we have to cancel plans because we are having a hard day. If we were active before -- shop-till-you-drop kind of gal -- then our old friends may not be inclined to make the transition, to just sit and visit.

Can't blame them. If we were not given this challenge and our own hands forced to find compassion ... we too may have been unable to stand by a sick friend.

So I find comfort where I can and feel blessed to have such amazing and inspirational friends on the internet.

Cheers to all.

[pat57]

My world is getting very small too. I don't socialize. I am fortunate enough that I can work. There were 4 years that I couldn't. So ,earning while I can ,is my priority.

[MomtoGiuliana]

My experience, when I was very sick, was that most of my friends vanished. Now that I think back to it, and am very functional again and re-connected, I think a lot of it had to do with people not wanting to "bother" me while I was sick. People wanted to come over to see the new baby (and I suppose they wanted to see me too, anyone who has had a child knows how this goes), and I discouraged people from visiting at times b/c I felt so crappy--I wasn't up to socializing. So, I could have reached out more than I did--but I wasn't up to hosting people.

I am fortunate enough not to have experienced long-term disability so I don't have insight into that. I can imagine that if one is too sick to work, but not too sick to have friends visiting, etc., it is hard to develop and maintain a social network b/c your energy is limited.

My issues are minimal compared to what most people here face, so I hesitate to even mention them. I still have to guard my energy--I need down time. I cannot stay out late at night. My biggest social issue is that I no longer drink alcohol. I hate being the odd one out at dinners out, etc. I have explained it to some people, but, usually, I just order water and explain nothing. I also have the focus problem ramakentesh mentions--for me it is a problem at night or in certain lighting with large groups of people. I can feel slightly disoriented and it can be difficult to focus on conversation--which I think is POTS-related.

[cardiactec]

unfortunately the majority of the time, i have had to choose between a career or social life. i dont have the energy for both.

[sheba]

I still deal with issues that my family think Im faking so I learned not to let them get to me. Im just really having a rough time dealing with my kids not understanding why mommy don't feel like going to the park today. I live in Miami it's really hot down here if anyone have ever been here it's even hot inside the house with central air. What's even harder for me is dealing with a newborn baby in addition. My husband works alot because I don't. As far as friends they call every once in a while, if I don't call them they won't call me.

[Maxine]

I was fortunate to have a second income in the house. I'm no longer able to work, but if there is an employer out there somewhere who can let me make my own hours, and allow me to leave whenever I can't sit up any longer it would be great. However, I would not have a social life at all, because working 20 hours a week would zap anything I had in me to socialize.

Being approved for disability after working over 20 years, has opened up opportunities for me to see my family, grandchildren, and friends. The last few months of working was brutal, and I finally had to admit there was no way I can work after missing a month. At this time I couldn't work or see my friends and family. I couldn't even see my Dad on father's day. Since then I have had enough improvement to get out of the house, but unfortunately I can't go out for very long unless my husband is with me, so he can drive home when my body freezes up on me.

I feel for those of you that can't see family and friends because everything you have is used up from working.

Maxine :0)

[coloredblood]

UUUGHHHH!

If I didn't have my amazing boyfriend I think I might just burst into flames! I try to get out about once a week to see some of my friends. It's a push sometimes, and sometimes I just can't but that's what I try to do. I can't work and I can't be very active. I lost most of my friends within the first 3 months of being sick. It's just too much for them to take. I have also had to get over my pride a bit. I didn't want them to see me weak and tired and pale....or on a bad day unconscious. I realized that I had to let them in to actually have them there. My sister was afraid of me for a while, but now she comes to visit a few times a week. I just told those who matter to me that this was how I was, maybe just for now, maybe for a really long time. It's not what any of us wanted, but explaining it seemed to help my friends. My boyfriend is still the one who is there for me when I'm angry and feeling like the world just isn't fair. I've chosen him as my one person I can fall completely apart to. As for the rest of the friends, they either get it, or they don't. But those that do, I think, are the best friends in the world. They are the one's that are worth it.

~Nancy

[ajw4790]

Hi,

Yes, due to lack of energy and other symptoms (dizziness etc.) I have always pretty much not had much of a social life, because it doesn't really allow for it. Especially when trying to get through school in a tough grad program, it was all I could do to stay alive and keep my head above water in school. There was no room or energy to go bar hopping or partying late at night. And yes, people do not understand... According to some people I am too socially isolated (and they say it in a way that I have some control over it or caused it... ). I keep wanting to say to them, "come on people, if I had the energy yes I would like to go have fun, and do something besides sit at home and try to keep my sanity". So, yeah I can understand as well.

[dizzygirl]

uhm yeah pots had totally affected my social life from the word go!

i went from working and being in college to being bedridden...most of my "friends" (you truly find out who your true friends are when things get rocky!) split...

at this point in my life.. i'd say i pretty much have no social life...while i talk to close friends and family.. i am aunable to travel or for my local friends.. its nearly impossible to go out and even do an hour or 2 to have lunch or dinner...

while i love visits from friends.. i've one to many times been unable to keep my eye balls open and i've fallen alseep! while my closest buds understand.. i still feel bad b/c they took the time to stop by ya know?

I dont know if it werent for the telephone mail service or the innternet life would be prety gosh darn lonely!

anybody found tricks to being able to get out n about?

[masumeh]

Over the past 6 years with POTS, I found social life challenging too. Obviously, when my energy changed, my activities were blasted and therefore friendships were strained bc the things we used to do together weren't happening for me, but still going on for them. Different worlds. I was upset, and felt abandoned at first. I thought our friendships were much deeper. Like I needed them somehow, but no one showed up at roll call. That hurt. But over the years, those friends that I thought split are still there somewhere in the background. I know that their lives are fast paced, too much to keep up with. But we see each other a couple times a year, send emails back and forth around holidays and special events, etc. I have to make due with that because I CANNOT physically do anything more--not because they are ditching me. I had to accept that limitation. I admire those friends for caring, staying around, and adapting in the relationship...of course, I miss "the good old days" too. Before POTS, I was one of those "friends are everything" people. But you know, their lives can't stop just because ours did. It's not their fault we can't keep up. And we really can't expect them to slow down for us. That's how I see it.

[ramakentesh]

Ive still got most of my friends thankfully but there are often times when i have to cancel or I manage to drag myself somewhere and sit there nodding for hours while being preoccupied with trying to stay conscious...

My best bet is that if i want to catch up with people and im feeling ok, I do it on a weekend and pretty much kepe the rest of the day free - if i use my energy up earlier in the day im in trouble...

That being said, when my pots is ok i can even run some days without paying the price for a week later. But at its worst i cant even stand...

[dawn]

My social life consists of the telephone and the television:). Throw in the must go to the doctor appointment.

Dawn

[willows]

What social life ?????

From going out to functions such a parties and balls and charity events I now do nothing at all , I call people and email them and write on a few sites such as this and another but as for seeing people ..............er NOPE.

I suppose I'm lucky as on very very good days ( which are now getting very few and far between ) I can go shopping with my son or husband into town , which in all is the highlight of my month for me , I've even had to at the minute give up doing any charity work at all be it via phone, letter and especially in person as I cannot control my sweats , head pains , loss of vision and now my balance has started to go , well never mind I'd make a great 'extra' on a hospital movie or a TV show as a patient in a movie would I ?????

See , you can always find something positive out of jolly old pots . .............Ami XXXXXXX

P.S. one thing I have found is that if I want to go shopping with hubby to sleep in the car on the way to the place , on arrival the first thing I then do is get a cup of coffee to wake myself up and something with sugar in to keep me going as I shop , once back in the car I always fall asleep on the way home again , but at least I've been out and about and I feel I've done something .

So make sure when you go out you have one of those blow up head supports with you or a V pillow for your head and a fluffy blanket and snooze away until its time to shop .................. also check as most UK shopping malls offer free electric scooters to run around the place in now , after all they want you to shop with them as money is money who's ever it is , these have to be pre-booked a day or so before hand , yes, I know its hard to pre-book as we never know how we are going to be , but its worth a try isn't it .

This works for me and I can scoot into every shop in and around Plymouth in Devon and not feel like I'm going to 'keel over ' all the times as I'm sitting pretty , so may be if you have someone who is willing to drive you say every fortnight to a shopping mall and bring you home again , staying with you to shop and carry the stuff back to the car along with you if they have to !!!

[Amber]

I find it difficult to make and maintain friendships because of my illness. I'm barely out of the house so opportunites are slim but even when I do meet people I find its too hard to keep friendships. I'm always having to cancel plans because I'm not well. I also never feel comfortable with people coming over to visit me since my house is always a disaster zone and its too much work to clean it. I hate when people show up unannounced since I don't have time to tidy or build up my energy to visit. I also feel really bad when people invite me to their place for dinner or something and I am never up to reciprocating. It's also hard to convince people that they really need to be careful not to visit when they have colds and flus.

I guess it comes down to that fact that having friends requires more energy than I currently have. I am lucky to have good family that keep up with me by email and don't expect much of me. I also have a great husband who works from home and is a homebody so I always have his companionship. I guess one or two really close/reliable friends or family that truely understand are better than lots of friends that don't understand.

I used to feel like my old friends abandoned me (and some really did...they just couldn't handle it) but like some of you, I realise now that alot of it was my doing since I would always turn down their visits and plan-making because I wasn't up to it. Theres no maunal on how to be a good friend to a chronically ill person so I can understand how many just silently slip out of our lives because they don't know how to be there for us.

just my two cents..

[carinara]

i have to choose between My job or a social life. i really dont have the energy for both. That means that 90 % of my social life is over the phone. But even this ist sometimes too much for me because speaking makes me really dizzy at times. So i always try to listen more to what my friends have to say. Since i also have my daughter to look after spending time on the phone is not always possible, and when my friends ring me, it often happens that iam already in bed to get enough sleep and rest to go through the next working day. But i did find out who my real friends are ! iam still upset and sad because one of my so called best friend just dumped me because i dont function right anymore. She ist working in the medical field and treated me before i got diagnosed with POTS in the end i think she just didnt take me serious anymore. This really upset me big time.