Since my MAV started a little over 2 years ago, I’ve become much more introverted and have spent less and less time with friends – partly because some of those who I thought would be there to support me while going through something like this really weren’t. Though I have a very supportive and wonderful husband, I don’t want him to be my only source of support/person I can talk to. I just don’t know how to put myself out there now, especially while dealing with a chronic condition as a 26 year old person. I don’t feel like other people my age – or of any age, really, but particularly this age – are empathetic to what I’m going through and don’t want to be bothered with someone who can’t drink or go out to the places they go. I’m just tired of feeling so empty… Anyone else going through this or have any advice on the subject?
I’m 28 and know exactly how u feel unfortunately. I work and that is the extent of my social life right now. I have some friends, but like you it’s just too hard to try to maintain those friendships right now, they just don’t “get it” so I’ve just decided that I’m not gonna force it bc stress makes me worse. When and if I feel more like my old self ill try to reconnect and if not I’ll form new friendships! I’m just focused on me and my family right now. I’ve got a lot to be thankful for but ivelearned what I can and can’t handle currently. It is sad that my life has a lot of limitations, but am learning a lot about myself and my “friends” on the process
I can relate so much!! I am now on 3 daily preventatives, but until they did what they needed to, I literally had no social life. I still must be careful though and monitor so as not to overload my already topped migraine threshold!!
Hang in there friend. I visited 3 migraine message boards many times per day for my social connection. Also, I am wondering if there is someone on the boards that you could telephone and visit with? I also found that that helped me tremendously in the early days!
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I visited 3 migraine message boards many times per day for my social connection.
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Out of interest, which other migraine boards do you recommend?
I can relate too. I’m 23 and finding people who understand or have empathy for what you are going through is really difficult. Like you said, they are focused on going out and drinking - neither of which I want to do. I feel like a lot of friends are there when they need you, but when you need them they turn their backs. One plus to that is knowing who your real friends are, but it doesn’t make it any easier. I try to maintain some of my friendships through facebook/twitter/e-mail/skype because even if you aren’t feeling well you can still communicate with them. I know it’s not true socializing but it still makes me feel connected.
For the people who can’t stick around by your side when you are going through something like this, forget them and don’t worry. They weren’t real friends in the first place if they would do that and maybe this is fates way of making room for new and more meaningful friendships for the future. I know what you mean about not putting yourself out there too but give it time. Your life isn’t going to be the way it is right now forever, things will change. I would focus on doing things that you enjoy right now and that make you happy. Do you work? Getting out a little bit everyday and talking to other people, no matter how insignificant can make a difference in how you feel. Take up something you have always been interested in and can do without limitation. I find changing just one thing in your life is often enough to bring new people and circumstances into it. All of this is way easier said that done, I understand that, just wanted to give some suggestions.
Being on boards like this one really help me because I like interacting with people who are going through relatively the same thing as me. I also think it’s wonderful that your husband is supportive of you, that is one thing to be thankful for. If you ever want to talk about anything at all, message me.
It’s so so tough! I’m 32 with two kids that I stay home with. Not only do I feel lonely but I feel bad for them too. My oldest son especially. I used to take him to his sports practices and games, we’d go to the park all the time after school etc. Now I just pick him up from school and we are home for the night. I don’t even try to explain it to many people anymore. I have a few very close friends that really understand but they have lives and families too. I hate to sound like a little complainer to everyone all the time. Whenever someone asks how I’m feeling I just say, I’ve been better, I’ve been worse. It’s just not worth going into. My in-laws make it especially hard. They really don’t understand MAV and I think they think I’m crazy.
While my husband is understanding he does not have MAV. It’s really hard to understand how debilitating this can be unless you have it. Which I would not wish on anyone!
So yes, I feel a lot of loneliness as well!
I can relate too. I have six grandchildren who I would see almost every week. Now I find myself cancelling our plans because I just can’t cope. I am almost always dizzy and lightheaded. I go to work, come home and basically go to bed. My husband does all the shopping and cooking. Over Christmas weekend my eight year granddaughter wanted to make muffins. We got through it but she kept asking me if I needed to sit down, was I dizzy? I was but pretended otherwise. Sad. Everyone says they understand but then they try and make plans with me that I just can’t do. I am tired of feeling sorry for myself. I am thinking of seeing a therapist. The loneliness is overwhelming somedays. MAV sucks but I am thankful I can at least manage to work because we are so busy most days I can almost forget I am sick. Almost. I wish all you wonderful MAVers a peaceful and curative New Year! When I feel overwhelmed I come to this board and know I am not alone. Sorry for the long venting. Take care,
I’m so sorry that you feel alone. And first off all a big hug.
I had a tradiedy in my life 6 years ago, when I was 25. And I lost some freinds on that account. But now some years after, I’m in contact with some of them again. And we have talked about what went wrong. Most of them just did’nt know what to do. And I didnt have the forces to tell them what to do. It took so many tears that they were not there for me. But now I think they were to unsercure to be there, they actually did have the intensions.
What I lerned from that time is, that I need to be very very specifik about what I need from my friends. I tell them I need them to come to my place and make dinner, and tell me all about there interesting lives, while I listend from the sofa ;O) Make them do the warm up before going out in my sofa. And so on…
And I put away the “kind-girl”-thing, and instead tell what I need. Call when I need to talk, instead of waiting for the phone to ring. Some days I am so sad that no one called, visited or emailed me. But then I think; alot of days I just lay here all day, and before I got sick I would’nt have noticed they didnt call, because I was bussy doing my thing. But now, I just stay put… ANd I notice.
Its not to tell you Its your responsibility, its just because I found out, the hard way. (And since my friends was sorted 6 years ago I have only the brilliant ones left)
Best from Line
Argh Its really hard to reply sensitive postes in another language than your own…
I would be shocked if everyone on this site doesn’t relate to your comments…if you are suffering from MAV then you have blown off countless social events and have disappointed friends by not attending their functions. You don’t have to be in your 20’s to feel the loss of friends…I am 57 and WAS very sociable till 4 yeRs ago when this mess started, I have lost friends and I have encouraged my wife to go out without me, it’s not fair to have her always stay home with me.
Still waiting to find the right drugs for help and the minute I feel better, I’m having a party and invite all my friends, and of course hope the bad feelings don’t come back right before the party…ha
The Boards are Dizzytimes.com and thedizzylounge.com and healthboards.com and for that one I think they have a migraine selection, but when I used to visit it, I would scroll to “ear nose and throat” these are the ones I visited many times per day for quite awhile. This is the board that I frequent most now.
Line, I admire you for recognizing that not getting what you want does not mean that people don’t care. Even better than that, learning to ask for what you want, and talking about disappointments, these are wonderful things to give to yourself and your friends.
I have friends that I’m close to in different ways. One person just isn’t comfortable talking about emotions, but he’s right there if I need a hand, or need someone to help me think through a practical problem. Another I can talk to about feelings, good or bad, but he needs to send me unending wacky political posts, without validating anything. And he puts my wife’s teeth on edge. My wife’s closest friend is the sweetest, most thoughtful woman, but she’s also just so private that I need to be very very careful of her boundaries, or I’ll make her extremely uncomfortable without meaning any harm–and without her thinking I mean any violation. If she seems unhappy, I have no idea how I could reach out to her. It might even be that some of Line’s friends were wired that way.
Thank you for you wise words Line - I wish I’d been brave enough to ask my friends to ring me or call around for a while & keep me up to date with all their news. I found it really hard to even have a short phone call & with severe migraines really didn’t want to see anyone. However, now I’m feeling a bit better I can see more clearly from their angle that they just didn’t know what to do. I had a big group of friends but am left with only three who have stuck by me & sent supportive emails & phone messages. I think because this MAV thing is so hard to understand no one who hasn’t experienced it can really emphathise & if they meet me at the shops I just look normal to them in spite of the fact that I’m just desperately trying to keep my balance! I have a friend who went thro’ breast cancer recently & she had a whole group of friends wanting to cook meals, take her to appts, etc. People can relate to that & can do specific things to help. I’m just grateful I don’t have cancer. One NY resolution to to make contact again with my former friends and not feel disapointed that they couldn’t give any support.