I was just wondering if anyone else has a hard time leaving the house going out and participating in social activities? I know the more time I spend alone, wallowing- the more depressed I get, but going out doesn't really seem to help either. I've never been the social butterfly and actually enjoy being more of a home body anyway but before lupus I still went out and did things. Now it feels like I don't have a choice that I'm home.
My boyfriend always wants me to do things with him and his friends and I have from time to time for him, but I never have fun. I'm tired, I ache, and hanging out any time past 9PM is late for me. I just can't keep up and since I'm only 26 everyone else wants to just keep partying and so I sit annoyed wanting to go home. I guess I just act and look how I feel which is miserable.
I used to be very into hair, makeup, clothes, etc. but that takes way too much energy now and I feel self- conscious about that as well. I get tired of telling people, I'm fine or I'm having a good time when I'm not and since I'm tired of faking it I just avoid it and stay home.
I have this problem. with me it has gotten to hard to hide the pain and I’m tired of having to down play it or explain
what so few understand it’s easier to be alone that way when I cry it doesn’t bring anyone else down
I feel like this quite often. I have to plan a day out with friends ahead of time so I can rest for a few days prior. I enjoy going to their houses and spending time with them. I’m fortunate that I have friends who are very understanding and who don’t care if I show up with no makeup etc… I am a homebody by nature so being alone doesn’t bother me. I worry more about shortchanging my youngest. I want to go do stuff with him but between the kidney stones and the inflammation in my SI joints, hips, and ankles I’m struggling to move through the pain.
I think wanting to hibernate is part of the lupus"-experience". I know I should get out but I hurt, I often feel nauseous, and it just seems to take way too much effort to get ready. Of course, the 40 lbs I have gained from meds, hair loss, and on and on. If you can force yourself try and get out. I think we would all benefit from counseling.
Yes counseling does help. I know this is going to sound corny but I had to learn this lesson the hard way DON'T LET LUPUS OWN YOU!!!! You have to fight. I know it's hard believe me I know! I went through cytoxin treatment and I was bald and about 60 pounds over weight. It was VERY hard and I did hibernate in my house. But even though it doesn't feel like it you will begin to feel better. Have a nice long talk with your doc and make sure to tell him/her everything. I still have bad days like today when I just hurt all over so I'm taking my pain meds and I'm going to just relax today. Please remember it will get better and try to look forward to those days. Do things that make you happy no matter how small.
I can definitely relate to your situation. However, I find that when I push myself to be social, I usually end up having a good time. But I hear you don’t. That may be because you’re pushing yourself too hard. I try to explain to friends and my husband that, as much as I’d love to stay out late, my body needs to rest. I don’t know if they always understand though. But they’ve now learned that when I say I can’t participate it doesn’t mean I don’t want to, it means I can’t. For me, isolating isn’t good. Yet, so often I find I’m in pain and exhausted. I try to get out and do things with my son, but I can’t always do that either. I wish you luck in however you choose to handle your situation and I hope your boyfriend understands why you can’t always join him and his friends.
I can definitely relate to your situation. However, I find that when I push myself to be social, I usually end up having a good time. But I hear you don't. That may be because you're pushing yourself too hard. I try to explain to friends and my husband that, as much as I'd love to stay out late, my body needs to rest. I don't know if they always understand though. But they've now learned that when I say I can't participate it doesn't mean I don't want to, it means I can't. For me, isolating isn't good. Yet, so often I find I'm in pain and exhausted. I try to get out and do things with my son, but I can't always do that either. I wish you luck in however you choose to handle your situation and I hope your boyfriend understands why you can't always join him and his friends.
I was wondering if you have dogs I have two and both are rescues when I am feeling bad physically or emotionally they always have a way of making me feel better. Even when you have low energy try to play with them in the back yard or maybe a short walk. I don't know if anyone else feels this way but my dogs give me peace and relaxation. I will keep you in my prayers.
To all the positive responses, thank you so much. This is a particularly difficult day for me as I started on methotrexate. I have tried so many other drugs but my system won’t acept t hit them. sorry for negatvity I am so worn out
I can totally relate to how you feel, in fact I just and this conversation with my psychologist. I feel like home is my safe haven. In my rob on the couch or in the bed feels so good. I even began to isolate friends and family because I don’t like explaining how I feel and making plans that I have to cancel or dread going to anyway. I know that this is not normal behavior but I have not felt “normal” in a long time. You can do so much from home, order groceries, movies and skype if you wanted to. I wish my doctors would do home visits. You are young but your body may not feel that way. What ever you feel comfortable doing do it, who cares what others think. You should have those around that you can talk with or visit so you don’t fall into a depressive state. I suffer with depression that come on with lupus.
I also can relate even as I make new friends as we move around. I find that even though as young as I am. Isn’t as young as I feel. Some days are better than others but sometimes having someone outside of the situation like a counselor or group can help. Also, please do not give up on the things you enjoyed doing even if you do it for yourself. You might find that one day it is the thing you need to feel extra special or beautiful. I was told that having Lupus makes me a very strong person stronger than I ever was. I hope you believe as much as I do.
I'm not so young I'm 50 and was diagnosed when I was 24. It is hard to make friends because you almost always end up explaining why you can't do something that everyone else is doing. I have two sisters and we used to be very close but when I was diagnosed with Lupus and either didn't feel good or just plain didn't have the energy they kind of stopped even asking me if I wanted to go with them out to lunch shopping or whatever. Even when I'm feeling pretty good they don't ask. The other day one of my sisters said something so mean and hurtful that every time I thought about it I cried. She told me she didn't want me to come to where she works because I am an embarrassment to her and she didn't want people to know I was her sister.All of this came about because I was on Facebook and accepted a friend request from a person she works with she said she didn't want me to talk about my Lupus bullshit because it is embarrassing to her. I have to tell you that REALLY hurt. What I can't figure out is what is so embarrassing about me having Lupus? I mean it's not like I announce it. Sorry I started rambling. I Hope lostfaith feels better!
I can totally understand where you are coming from. While I am very fortunate that my health has very slowly been improving, so I am able to work. So, I do a fairly good job of pushing my way through work each weekday. The problem is when I am not at work. I also find myself not wanting to do anything after work or on the weekend. My husband passed away a little over a year ago so I am also dealing with that grief, which adds to the overall issue. But by the time I leave work, I do not want to meet friends for dinner or even just to visit. Weekends I do want to get out some, but I need to ‘recover’ from the week. Saturdays I try to get at least the minimal done … Things like getting milk and bread…gasing up my car for the week etc. Today. for example, I had an appointment to get my hair cut. I always set that up for noon or after, because by Saturday I am unable to get up and function very well until late morning. So I went and had my hair cut and came back home. Then did a few things around the house …and then I was done for the day even though I had not done the ‘minimal’…pain started increasing and my muscles (especially my legs) started shaking and weakness started increasing. And Saturday is my better weekend day! Sundays I’m usually down most of the day. I do really miss going to church too. BUT friends will want to meet for dinner during the week or on the weekend, go to a movie …and I usually won’t go because of all the reasons you mentioned. Sometimes I have gone and will enjoy the movie but by the end of the it, I am so ready to go home…but friends always want to go to out to dinner. At that point I am usually really, really wanting to go home and the enjoyment stops. These days I try to avoid even talking about meeting after work or on weekends. This is something I am working on…knowing I will be still pushing through it …and fortunately, my friends do understand. I just can see if I don’t ‘work on it’ I will end up being a loner…having isolated myself from the world. My children are wonderful and are understanding, but I think we need friends more our own age and also to socialize with - that is ‘healthy’ behavior.
So, hopefully you will be able to work on it too. Just know that there are a lot of us that do understand …
I totally understand how you feel. I just returned from a vacation to Orlando.My older sister and my four children wanted me to go along for their graduation trip, I was given my youngest 2 children. I knew it was going to be insane to try to attempt Disneyworld,and Universal Studios, the week after the new Harry Potter exhibit, opened. I don't even like going out to dinner because it is a major production. I feel like when my children were babies, do we have the diaper bag, stroller, and all the stuff you have to carry along. Now it's do you have her bag with her meds, battery charger for pain implant, diabetes testing supplies and my walker. It makes me feel like I am holding everyone up. I have to rent a wheel chair, I can't eat this, someone has to stay withe me. Push my out of the sun. I try to put on a happy face and grin and bare the pain. I am miserable the whole trip thinking about all of the money I am spending, wishing I could enjoy myself. I try not to notice the look of concern on my older daughters face. I guess I don't have any advice just wanted to let you know that I understand how you feel. They took so long to figure out that I had Lupus , I have suffered a lot of damage to my body that is not reverable. You are young and so many new treatments and new research is being conducted that hopefully they find a cure or a treatment so you will feel much better before you are my age!! Feel better and keep your head up!
Hi everyone I just wanted to say I'm sorry for ranting about my sisters and how hurtful they can be. I know that this is not the forum to do that. It's just that sometimes things people say and do because we have Lupus can be really hurtful.
I can relate to all who posted here, I've pretty much turned into a hermit, seldom leaving my home, alone a good portion of the time. Its hard to get motivated to do anything when you just don't feel good, I'm grateful for this site, everyone here is in the same boat in one way or another and knowing that makes living with lupus a little easier because we are never alone.
I really thought it was just me! For me though the fatigue is what gets me, I just don’t have the energy and people don’t understand. They think I’m avoiding them, or being antisocial, or just being a b*tch and no matter how much I try to explain to them it’s like they don’t hear anything I’ve said. But I agree I enjoy my house, I just learned how to loom knit so I’m knitting scarves and Afghans all over the place! Lol! I say so what you like being at home, but maybe get a hobby then you won’t feel so despondent.