Sick and Lonely

New Life OutlookNew Life Outlook New Life Outlook
edited September 2014 in Coping

imageSick and Lonely

With Lupus, I can go days without conversational laughter of any kind. Feeling sick and lonely together is not a great combination. I feel isolated.

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  • I am exhausted mentally trying to explain my fight with lupus. Often times I just want to crawl into a corner and scream. No one understands which makes me feel they don't care. One day you are up, the next day it can be a different story. When my body aches, my joint are swollen and muscles are so tight, I often find myself alone. I was diagnoised almost 3yrs ago. Wow has my life changed. Feeling lost and confused.
  • I have had Lupus for almost 5 years and recently I had to stop working due to pain and fatigue. I have many issues with my joints, a tear in my hip and anklyosing dispositions which is very painful. I live in doctors offices and taking my medication is a full time job. I have been denied SSD twice now and just obtained a lawyer to fight for me. I am so lonely and socially confined it is very frustrating. I often do not feel well and with all of the procedures that I have had to have done lately it has made things worse. Even friends and family have stopped inviting me to things because I more often than not have to decline. I guess they figure why ask anymore. And I do have to say it does hurt my feelings, so I just keep to myself. I know others with Lupusbut it is hard to get together as they often do not feel well either.My outlet is social media and running my own lupus page through facebook and educating people about the disease. It helps to make me feel like I am adding my contribution to the world and not being useless. I wish I could go back to work. It was my only outlet, but unfortunately my body just won't allow it anymore. If anyone has any ideas on other ways to socialize I would gladly take any recommendations.
  • I totally understand the awful feeling of being so isolated. I still work. But sometimes just go hide in the bathroom and cry . by the time I get home I'm so tired and in so much pain I can't do anything
  • I lost mostly all of my friends. It's hard to do anything when you're in excruciating pain. I'm always ewing or ouwing everytime I move. It's awful. NOT TO MENTION... I gained 60lbs from taking prednisone. When this first started I was on 60mgs of prednisone and blew up! My hair is also thinning from the methotrexate. It's just not me!!! I think once I lost the weight I'd feel better about myself but I can't exercise and I do eat healthy I don't know what else to do....the weight just won't come off. I'm still on 10mgs of prednisone and my Rheumatologist put me on folic acid so it would decrease my hair loss but I'm still in pain, fat, sick and depressed! I'm hoping the methotrexate starts working again soon (2nd go at it) it made my liver go crazy. So I just switched from celcept to methotrexate. Celcept was not working. Now I have to worry about my liver again. It's always something.
    Thanks for letting me unload. God Bless you all and may you feel better and know if any of you ever need to talk I'm ALWAYS available!
  • The isolation is devastating. I am unable to work, so when asked what I do, my reply is I am a professional patient. That pretty much sums up my outings. I find I am better with strangers. I once had a large circle of friends but I cant keep up and trying to explain just gets old to them and my family. I feel so guilty because I can not commit to anything. I do not like the energy it takes to talk on the phone but I am always ready to text or message, my family is finally excepting this fact. This has been a particularly stressful week trying to fight off depression and the urge to give up and die. This article came at a good time. Please forgive me for rambling but oh my it felt good! Thanks! g.
  • It's so hard to maintain friendships and watch the world go round and round when you would rather be in a cozy blanket taking care of your health. But then comes one of those rare days when you feel ok and want to do something, but you no longer have a connection to anyone
  • I never imagined all my life that I actually HAD something. Since I was a kid, I fatigued easily, had weird health issues, couldn't keep up with friends. My family didn't understand, probably because the alcohol addiction my parents had was the crux of familial dysfunction and abuse. I left home at 16. With a job, no place to live and constantly sick The friends I made, I clung to, until it was too much and they stopped caring about me, my constant complaints, pain, and being a home body. I was diagnosed in 2002. A year after WAR OF THE ROSES, aka my divorce. I lost everything and everyone - my ex saw to that. Little did I know how the 2-1/2 year divorce and the stress would impact me... I am generally a successful person and single Mom. I am in advertising sales and so I'm ON while I'm working. But once my energy is tapped for the day, I'm done. This disease inhibits me, greatly. I do not have family or many close friends, I never let anyone get close anymore cuz it hurts too much when they walk away. I just make small efforts everyday to function as normally as I can and try to be social. Baby steps each day.
  • I @Dansmom. I. Hate to hear that... people tebd to leave in your darkest hour. I only feel like talking about lupus and its problems on this site. Anybody else I. Always feel like you got to be careful how much you say.... you dont know if they get tired of hearing you. I understand everything you going through about the lupus...I. never married so I can't. Relate.Ive had my daughter walk out ob me at the worst time in my life.When I just got out the hospital.I was so hurt me bad,see my mother had lupus ... now me.said she didnt want to go through it anymore. I. Was crushed. All I could do was pray and cry.
  • @Elizabeth Nothing wrong with cant talk her..hell where can you?
  • @Tammy2671 I know that. Dam predisone! Seems like your everything goes out of wack. I hate my life at times..I feel like I have isolated myself. I try to get this depression thing not punk either.Still trying to figure out what to do with myself. I guess im afraid to fall. When lupus was at its worst ...I was trying to work a full-time job. Had to kids in high school. I lost so many jobs due to this crap!I hate rhis disease!!! When I do get on a roll of doing things .I got to stop and rest ! Like Im eighty!!
  • I just found this site and I want to thank you for sharing your stories. I know you all must hear this a lot,, but I felt so isolated and alone and like the only person with these problems. I don't know anyone else with lupus. Is there a way to chat with people on here?
  • sherriesherrie New Life Outlook
    Hi @Pickwick, you can private message anyone here by clicking on their name and then using the Message button on their profile. Hope that helps a little. :)
  • I was just introduced to this site and have read some of your stories. I was diagnosed with lupus last march but believe I have had it for many years. I have trouble walking and when I try to walk any distance my legs loose their strength and sometimes my thighs have so much pain it's unbearable . I wondered if anyone else had any similar experience . I feel very alone because my doc says it's very unusual for those types of symptoms with lupus .
  • @bren I know how you feel. I have to work and by the end of the day I am all used up. I am always so tired. I just want to wake up and have energy and feel good again. Wishing you more good days than bad.
  • @Shari4 I am afraid to plan anything. By the time I get off work, I am so tired and no energy to do anything. People don't understand the level of fatigue we have to deal with. Wishing you the best.

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