All my friends keep trying to get me out all the time, I’m finding it really difficult to explain to them that all I want to do is relax and that I’m too tired for bowling, cinema, a night out etc. I quit drinking and I’m terrified to drink in case it makes me ill. I want to have a social life but in ireland there’s not much information about lupus or what can have an effect so I’m terrified of everything! Will it always be like this?
Hi,
I guess that would be a little awkward, going to the pub and just ordering a cup of tea… Do you play music? Maybe you should take up flute playing or penny whistle, then you could sit in at the sessions? Here in Los Angeles,no one knows about Lupus either…
Is there any clubs or any other social activities there, where you can meet people?
Wish you the best, hope you find some mellow people to hang out with.
Jon
I know that feeling i would make plans to go out and would have to cancel last minute because i would get joint paints or i would be to tired.maybe you can go swimming or do yoga, things that are gentle on your body,movie night. i just watch netflix,read,im on the internet or just text friends but goodluck with everything! by the way i love ireland always wanted to go..someday! (:
You have to adjust your self ( I know it’s easy to say ,then done)to your abilitys ,try to add a new interest in your life … Get a dog ,yoga,to Thai chi ,there you’ll meet a new people that might have things incoming with you after all…
This is what I’m trying to do as well for my self … My life changed too but it is what it is.
Maybe you’ll like photography or any other hoby …this way you’ll meet more people that doing other stuff then drinking and going out ( nothing wrong with this it’s just not for you any more )
Aria said:
Have you had alcohol with your lupus? My doctor told me it's okay in moderation but I've read online it's very bad with the condition? Am I just doing too much research and scaring my self too much?You have to adjust your self ( I know it's easy to say ,then done)to your abilitys ,try to add a new interest in your life .... Get a dog ,yoga,to Thai chi ,there you'll meet a new people that might have things incoming with you after all....
This is what I'm trying to do as well for my self .... My life changed too but it is what it is.
Maybe you'll like photography or any other hoby ...this way you'll meet more people that doing other stuff then drinking and going out ( nothing wrong with this it's just not for you any more )
You cannot spend your life being terrified of trying things, despite the fact that this is a scary illness at times. Just try to ease into things that worry you. If a friend asks you out for a night of fun, go ahead and enjoy yourself, but make sure you let them know you might need to leave early if your symptoms come on suddenly. This could be fatique or weakness or whatever. You can always drive separately from your friends so if you have to leave early they will not be affected and have to go home as well.
I have lupus and interstitial lung disease, which has left me with only 30 percent of my lung capacity. I still manage to remain as active as possible. I go to athletic events when possible, as long as they have reasonable accessibility for handicapped. I also am able to go to shooting range and shoot my weapons at targets. I can go to movies, dinner, etc., but am always prepared to leave early if need be. My friends understand this and even volunteer to take me home if I become ill.
It is simply a sad fact of life for lupus patients that our lives can be interfered with on a regular and unannounced basis, so you have to accept that. But you don't have to quit living. As far as being able to drink socially with your friends, I would just start out slowly with the drinking, like one or two drinks over the course of the evening and see how it affects you. You can build from there or quit altogether.
You could also ask your doctors about how much you should exert yourself on a given day. That can help you determine what you can do each day.
Get out there and enjoy life!!!
Thomas Franklin
Kellie394, you will soon start to listen to your body to determine your activities. Once you get a feel of your body do 's and don’ts you’ll be fine. I agree with the others find a hobby, read & enjoy the things you can do. Ask your friends to come over your house on a good day, instead of you going out. You will surely find out who your friends are now that your ill. Remember people comes & goes during your journey of life.
That’s right, do what feels okay. I think alcohol is not good with a lot of medications. And if you are taking muscle relaxants or opiate (vicodin, codeine), it is dangerouswhen I have. I have had periods in this lupus journey been th
Don't feel like you 'have' to drink to go out with your friends to have a good time, when you are feeling well enough to go out. Going out with friends isn't about drinking, it's about enjoying each others company, and having a good laugh.
Other times learn to enjoy your own company. Invite your friends to your house, play board games, or enjoy a movie on TV. Do you have access to renting movies ? If you do, have them pick up one/two to enjoy at your house. Drinking doesn't have to be central, make spiced apple cider, hot cocoa, etc. Good luck, and feel better.
I’m not much of a drinker but since Ive had Lupus I’ve gone out for a couple of drinks and been ok. If I just want to hang out but not drink any more I just order a coke.
I think a little alcohol is ok, but again, listen to your body and go home when you get tired.
Hi Kellie! I can totally relate to this and what you're going through; and I admit, it's not super simple. I have lost friends or have greater distance with friends that I used to be really close with, but I also have those that understand and get it now--which I hope you do too. It sucks but if you're not feeling up to it, just keep saying "No" and keep trying to explain to them what you're going through. Because noone knows unless they've been in a similar situation. Try to suggest other ways to hang out if they don't mind switching it up every once in a while-- like a movie night in, an old-fashioned slumber party, or a game night in. In regards to alcohol, I drink in moderation, like a couple drinks when I want to; I was never the type to feel pressured to drink anyways but when I do, the result for me is usually a stomach-ache. I hate saying this but in order to find you're own level of comfort for things, you have to step out of your comfort zone and try and find out for yourself because everyone's body is different and responds differently. I know, it's scary as hell, but you can do it girl!!! And all we can do is hope that it won't always be this way :)
Social life is a part of all our lives if we live normally. Human beings are social by nature.
I try not to call it “my social life” however, because people automatically think that means going out, playing, etc. In my case, I am isolated. I rarely have the opportunity to talk with, or be in the presence of other people due to my illness. As a result, this is what I tell people. Its not that “I have no social life”, but that “As a result of my illness, I am unable to function normally outside of the controlled atmosphere in my home, which severely limits my ability to have normal interactions or relationships with others outside my home.”
Maybe thinking of another way to describe it like this might be helpful?
Hang in there. We have good days and bad days, but good treatment helps most people live more normal lives. I think the key for a lot of us is getting appropriate treatment in a setting in which so many physicians don’t really know how to diagnose and treat patients so they can experience maximum benefits with minimum side effects or other problems. This is what I keep reminding myself, as it helps me feel hopeful. Being afraid is to helpful though. Fear and anxiety can help cause flares of disease activity that make us sick. We need to concentrate instead on enjoying what we do have, and trying to mitigate flares through elimination of activities we know will hurt us. Obviously we can’t eliminate everything, but education for us and those who are important to us, can help. We also tend to need to remember that, to have a friend, we need to be friends. Sometimes this means reaching out to others when possible. At home and online. This is our new normal. We can’t change our limitations, but can concentrate on making the best of what we have.
((Hugs)) and warm thoughts for you. The holidays might be a great time to reach out to others and make new friends. It’s a process…
Ellen
Kellie,
I know it’s hard for us that don’t live in Ireland to know what options are available to you. Thankfully, going out is universal. When I know that I am going out on a certain night I prepare about 24 hrs in advance. The day prior I stop doing physically exerting activities (laundry, housecleaning, etc) and just take it easy for the rest of the day. Go to bed early and get a good night’s sleep.
Next day, it may take all day to get pretty but that’s because I rest between bathing and putting on make-up and dressing. It may be an all day event but I will still have energy for the night.
When I am at the event I try to keep to 2 drinks, light alcohol as it doesn’t seem to make me ill. Beers and dark alcohol, and wine will be my undoing. Plan on resting the next day.
This is how I have had to adjust for my body and you will have to find what works for your body.
You will find that balance, honey, but it may take a while. Don’t give up too soon.
Have fun. …it’s still out there.
Are you on any medication
Hi Kelly,
I am new to the forum and posted just before you did. I can so relate to what you said. My best advice to you would be to listen to the suggestios the other members gave you. Since I am a newby, I cannot offer you any personal advice. The people here are very supportive and understand what you are going through, which family and friends cannot. Because, they themselves have/are going through it.
I just wanted to welcome you to the forum and I’m sending hugs to you.
Kellie I am so sorry you are having this difficult time. Once you learn your triggers for a flare up you will slowly learn your limitations and will know when and what you can safely do. It just takes time and a familiarity with how your body reacts to different stressors ..That being said I think not drinking is a good idea alcohol doesn't usually react well with many of the current Lupus medications. If you have questions we are here for you. Have you tried inviting your friends over to visit at your place? Make an evening of it maybe once a month I hope I helped a little God Bless Julie
I know EXACTLY how you feel! I went through the same thing with friends when I first starting feeling sick. I would argue a lot with friends because they always said I bailed on them. I don't think others can ever really understand what you're going through. But, I realized that feeling guilty or adding extra stress like going out when I didn't feel well to make others happy was making me more sick. I lost friends because of it. I quit drinking too, with my medications and the way it made me feel the next day I just couldn't handle it anymore. When I did go out like to see a movie or something, my friends would want to go out to the bar after and they couldn't understand that just going to a movie was exhausting.
I'm stuck in the house a lot not...and don't really have a social life, but I'm hoping to find an activity that is more lupus friendly like taking a yoga class instead of drinking at the bar. But, even that's tough.
I agree that a dog or any animal could be a life saver! They always cheer you up. Hobbies like photography or crafting are great ideas too. I used to be very active but was miserable so much of the time. I’m now married. My husband is a homebody by nature but I always felt pressure to do things. Since my diagnosis, I’ve waved the white flag and just stay in bed or nap regularly and stay in pajamas all weekend. I craft when I feel up to it. But I’ve accepted that my activities needed to change. Watching shows and movies on Netflix has been a lifesaver. I shop online for most things. It’s a matter of changing but being ok with it. It’s tough though. I’ve lost friends too. My body rejects alcohol now when I used to drink regularly, but you can pretend by ordering cranverry juice, etc. I drink sparking grape or apple juice in wine glasses to feel included. I feel for you. Hang in there.