No matter where I go for support, no one cares. Everyone has better answers, what ive learned works for ME, I share and someone seems to have a better answer. In a way I guess my answers dont matter. Mostly right now when that happens I feel alone and discouraged in this disease . When people care I tend to try. When people dont care I tend to shut down. I struggle day to day and now no one cares. I suffer in silence. Happy New Year anyways
I care. Your answers matter. Others have different answers because each person’s road with this disease is different. Take in other people’s opinions but then ultimately decide what your own answers are with your doctor. If you need someone to talk to, I’m here. I’ve lived my whole life with this disease and am happy to listen and help you in any way I can. Let me know and I can give you other ways to reach me. Hang on strong! You matter! (((HUGS)))
I care also, we all started the same way with people not caring but as you reach out to people some do. The ones that don’t care maybe have a problem with texting, think about that.
Only you know what works for you, don’t let others bring you down…btw, I love the name lupus sucks…
Lupus (or any chronic illness) can make you feel isolated and alone. People do care. I care. Everyone eventually finds their own path in handling this illness. Nobody has better answers or solutions than you. Your feelings and opinions matter and are important. Other people are simply sharing what they have found that works for them. In time you will discover what works for you too. I have lived with this illness for 20 years and it took a long time for me to figure out how to find peace and balance in my life. Do the best you can to take care of yourself.
Rachel, I care. I can honestly say I know how you feel. Chronic invisible illness can make you feel as if no one cares, you’re not heard, you’re misunderstood and faking. You will experience these things many times. I am learning where and who I can get emotional support from. Our support network is critically important to both our physical & emotional health. Strengthening your spiritual health along with belonging to a support group of survivors is majorly important to your journey. Hugs, Latonya
Hang tough, people do care. Even when the ones around you don't seem to caremember you have your fellow Lupies on this board a day WE care. We understand what you're going through, we're here to here about your good and bad days and to answer questions if we can. (((HUGS)))
I understand how you feel hon. Sometimes I just want to cure up in a ball in my bed and just sit out the world. I know you’re hurting and you’re sick and tied of being sick and tired. I was very active and productive up to my 40’s. Even taught karate and worked a 40 hour week at my job. Then my health started going south and in no time I had to go on disability. I was diagnosed with fibromyalgia and arthritis then. 2 years ago I was diagnosed with Sjogrens and Lupus. My pain levels hey so bad at times it hurts just to breath in. I’ve been on strong pain meds for over 20 years just to keep things be bearable. I have to see my doctor every month in order to get my pain rx when I went last Monday I was informed he was on a 2 wks vacation and there was no one in the office who sign a rx for it. I have enough pain meds to lay one week and the nurses there acted like I was a junky just trying to very a fix and didn’t even want to discuss with me on how I could hey the rx. So now I’ve been down to taking them only once a day to make them last till he gets back next week and I’ve been in constant pain all week. The nurses just could care less how you feel. If I could get by without taking any Messi would do it in a heartbeat. Believe me I’ve tried. I was on oxycontin for 2 years trying to control the pain but I hated having to ask for the rx every month for it. I managed to get myself off of that on my own but still needed something for pain so am now taking hydrocodone. So after that novel I hope you know that we do care and I’m always looking for new ways that actually help in our world of pain and exhaustion.
My husband call me useless because I don’t bring the money and cook any more, he gets angry to buy my meds for pain.my family getting tierd of my pain so I stay in my room so they don’t see me in pain but I know this on line support cares.we care about you may God be with you.
Happy New year to you and all!
I think when all of us are here with a common condition, we are support for ourselves. Yes, it makes us feel lonely at times but I assure you that you can turn to this support group anytime and you will get support.
Keep faith and things will be better soon.
Take care and happy and peaceful 2015!
I care for you--though I dont have lupus--my daughter does and I am with her day in and day out listening to all the stuff she has to say and what she is going through.
I tell her it is going to be better.
Hang in there--my hugs:)
See Rachel Sara, everyone cares. We're all in the same boat. I don't think any of us has a better answer. Everyone has something different that works for them. Noone is right or wrong. Different strokes for different folks. Take care.
Cindy
I know exactly what your going through my parents dont care and theyve been with me since i was 4 in the hospital. Everyone cares when your in there but then no one gives a sh* im thinkng about seeing a counselor for illness. Its too much
I truly care. Everyone here suffers in silence differently. I would definitely work with your doctor with regards to management treatment. Depression is one of many symptoms that occur due to our illness. I know that right now you feel that your alone but honey, believe me you are not...I am here for you whenever you need to voice/vent.
I understand fully, I am a former physicians assistant for 27 yrs and because of my lupus and kidney lupus I could no longer work, which put me in a bad slump along with all of the symptoms. I've also had to change my lifestyle as well. I stay away from stress as much as I can since it can cause us to flare.
Your going to encounter people that do not understand what your going through so, give them a chance so that you can explain to them what this disease does to the human body. If you need any help with this feel free to contact me here. I will gladly assist you as much as I can.
Just know that you will always MATTER. I'm here for you ......you take care okay?
This isn’t you talking this is the depression talking I am certain of that because I have been there since February please seek out a counselor if you can try it out if it isn’t a good fit try another one I am not trying to scare you but the depression that this disease can cause you is every bit as dangerous as the lupus I know that for sure because I ended up at the hospital in September because I seriously wanted to kill myself and I still struggle with those feelings even though I have a family that I adore and two beautiful grandsons please reach out and try and educate the people around you please please get help immediately and you are so wrong we do all feel alone in this disease that’s why we are here and we all think you matter very much please reach out to someone and get a hug keep in touch and remember god cares always lean on him I promise he will catch you
We are here. We understand. I have been where you are. Yes, a lot of people say and do hurtful things because they don’t or can’t understand. But everyone here understands. And we care. I care. And yes I have gotten counseling when I’ve felt as you do now, because I just needed someone to listen and not judge or give advice. Just hear me.
I care too.
Believe me when i say, i know how you feel too. I guess i wont admit to being depressed or suicidal but i question my own feelings more and more Lately. I sometimes feel like no one cares but what it is is they dont fully understand and its a lot to do with not really being able to sometimes explain what we feel ourselves, we just know we dont feel good or we hurt and just arent feeling like we want to be. Dont give up or result in shutting down because it will only make u feel worse this i know for sure. I am dealing with a lot right now and too often feeling like im sort of lost in my own mind and incapable of even reaching out so i stuff it, but have realized im only making matters Worse cause the stress only made me sicker.
I’m a single father that has had lupus since I was 18. I actually almost lost my fight at 18. I have had my son on my own for 13 years now and I belive with all my heart and soul that the Lord gave me Austin so I would have someone in this world. I have lupus, chronic pain, severe depression, an anxiety disorder, and chronic fatigue. these things all stend from the lupus and I didn’t know that until a couple of years ago. I have ran off all my friends and family with these ailments. I have never felt more alone or more uncared about in my entire life. then I found this sight and they really do care and understand exactly what your going the and how you feel. so when I say you truly have friends here that truly care about you in the deepest of concern I mean that! I will prey for you and I am here if you should need to talk or maybe just have a question I can help you with! We do care I promise!
what works for one of us may or may not work for another. I am always willing to listen to someone elses suggestions because you never know, what will work for you. We are always here to talk with to throw ideas around to vent we do understand and wish you well. God Bless I hope you feel better soon, Julie
Hi hon. I know I do what you find obnoxious, and I'm sorry this has happened to you. Your answers do matter. Especially as they relate to you and your illness. Learning other things is helpful too but you are part of the equation. We all are. We need each other for support, for instruction and for experience. Your support, info and experience will be helpful to us and ours hopefully will be for you. Just hang in here.
Hugs and hellos,
Petunia