hello and blessings to all my Sarc brothers and sisters
Posted , 6 users are following.
I basically need to vent and ask if anyone feels the same.....
?I get depressed, anxious, moody, and it is very hard to maintain a happy go lucky attitude that so many people expect, and they cannot understand when you don't act the way they think you should. As all of you know people see you and think nothing is wrong with you because you look normal. Then if they find out what you have, they seem to question whether you are really ill since we look okay. Some people think it is an excuse to be lazy. I just get so tired of all this crap that I want to scream. I was given a choice by my last two jobs that either I could resign or get fired due to missing so much work due to illness. I am the type of person that has always worked and that helps me feel worthwhile and that I am a contributing member of society. Needless to say after the last job, I get severely depressed and it took me a year to try and get some sort of normalcy back in my life. I went to my doctors and they suggested that I apply for disability. WHAT?? That is what I thought, NOT ME! I am almost 60 and I have always worked. With lots of encouragement a from friends and family, I did apply. All my doctors signed off on it and I am now on disability. This is very hard for me to accept. And now people really think that I am lazy and that I don't contribute to the family because I don't bring in a paycheck anymore. This really hurts......I feel like I have to explain to everyone what is wrong with me and what happens to me and why I cannot work. I get migraines that put me in bed, sometimes for days, fatigue so bad that I have to go to bed, so when I work really hard to make up for those days, I get hit with my body telling me shut down for a while or I will end up in the hospital. If I am around anyone with a virus, especially respiratory, since I have asthma, I get very ill and stay sick for a long time. The aches and pains are not fun, the osteoarthritis is all over, especially my legs. I had 4 surgeries last year to try and improve my life, carpel tunnel on both wrists, ulna decompression on one elbow, and surgery on my right knee. That was depressing also since it took so much time to heal from these surgeries. I wish I had never had surgery on my right knee since it is worse now than before I had it done. So, that holds me back from walking or exercising. So, now what? I have been trying to find work from home, it is almost impossible to find something legit or something that isn't telemarketing. Thanks for listening and let me know if you guys feel the same and have any suggestions.
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blessings to all,
Frustrated
0 likes, 15 replies
Mrs_Parker terry57082
Posted
I totally get where you're coming from. Being only 31 I left my full time job because I am always sick. Right now I work part time but my husband is holding down 3 jobs to pay the back bills we accrued due to my surgeries and illness. I am a training powerlifter and it always takes me longer to recover and im constantly dealing with tendon/connective tissue injuries. I can't say it will get better because it's a day by day process. But you're not alone and it isn't your job to prove your worthiness to anyone but yourself.
gina1970 terry57082
Posted
I'm tired all the time myself. I have stage 4 sarcoidios. I understand what it feels like to not being able to work or so the things I loved doing I've been fighting sarcoidios for 30 year's and I don't get out of the house unless it's a doctor's appointment. My life was taken from me at a very young age. And I don't look sick and so I get questioned all the time.
Gina
AmandaPC terry57082
Posted
Hi Terry,
It's hard, I mean let's face it no-one knows except us. People look and they judge and so what, let them. For us to be comfortable and healthy we have to live differently to how we use to. Venting is a huge part of this illness because stress is also a huge part of it to and bottling everything up is not good for our bodies.
I know it's easier said then done but we have to look on the brighter side, we are still here, I am not preaching trust me, twice with this now 2nd time it spread like wild fire and 4 years later it's still "active" I'm 36 and feel 76 some days. I fight this all the way I try diferent things to help myself, yea I get sick and right now I am in so much pain but I am at work as I speak and I just ignore it and.push on.
I hope you stay positive because you have to otherwise this illness will drag you down.
Do what ever it is you can to keep your mind and body active it's not easy but when we put our minds to it anything is possible.
Yours
Amanda
Thesufferer terry57082
Posted
YES. That's exactly how I feel - FRUSTRATED and also P****D OFF. In my eyes, I think most people are closed-minded idiots with no depth of thought. Unfortunately, that's how people judge others - if they look normal (nothing physically wrong with them) then they must be "imagining" things and "it's all in your head" ! Hey, even doctors have this stupid attitude a lot of the time when they cannot diagnose an illness.
My own sister refuses to call this thing (sarc) an illness. It's just a "condition" !! She doesn't like it when I say "my illness" and she's always trying to minimize this disease. And even though she might be doing that to encourage me, it actually enrages me. Maybe she'll start thinking more seriously about this damn illness when I'm in the ER with multiple organ failures or maybe when I'm dead.
My stupid friend isn't any better. He thinks my illness and all these weird pains and symptoms I have are all imaginations. He keeps saying "but they haven't given you a confirmed diagnosis", even though I've told him so many times that my illness has been confirmed through a lung biopsy! Makes my blood boil.
My uncle and aunts refuse to believe I have an illness. Last time I saw them a few months back they thought I was totally healthy. I look "normal" and I walk, so I must be healthy. Right ? Just eat 3 meals a day -I don't like to eat much- and all my problems will go away !! Sure.
My own stupid doctor is the same. When I tell him about some of my weird symptoms he thinks it's all imaginations (even though I have pics) !!
Another young "doctor" at the ER -while I was trying to find an answer to all these strange symptoms before my diagnosis- thought I was wasting their time. He didn't believe there was anything wrong with me. My body had burning sensation all over and my ulnar nerve in both arms were on fire, but that's just an imagination! A few months later I have the diagnosis (after SIX doctors).
To say "frustrated" is an understatement. I'm p****d off. I live alone -I don't mean just physically where I live but I mean in this world- and despite the loneliness -that I don't actually mind that much- I feel it's better to be alone than to be with people who refuse to understand me and judge me only by what their eyes see and I'm not just talking about when it comes to this illness.
I wish you all the best.
terry57082 Thesufferer
Posted
You have hit the nail on the head. I am sorry you feel this way as well, but alone is a good word. I don't go out much and I don't have many friends. The ones that I do have I am not sure if they believe everything about this disease. How about trying to explain to your employer why you miss work. They do not understand and don't care to try and understand. I had to go on disability and try telling people that, they think you are a piece of crap for being on disability. Blessings to you and reach out if you feel like having a b***h fest anytime you like, I will join in.
terry57082 Thesufferer
Posted
P.S.
You are never alone, that's why we are here.....Remember that okay.
AmandaPC Thesufferer
Posted
Hi
It really is hard when people don't get it. Family, friends, colleagues it's very annoying and sometimes I feel like I shouldn't talk about my pain, or my symptoms or even my side effects of the steroids because what's the point. Half the time they don't care, or believe that it's anything serious. I don't have to be walking around with my head hanging off for people to understand that yes I am sick and yes I am in pain but people are ignorant to things and don't understand.
I'm sick telling my doc the last 3 years that I have lumps growing down my shin, they started the size of a pea and now very big, only last week they took it seriously and are sending me for a ct which by the way is scheduled for a years time because of waiting lists, I mean seriously that's ridiculous.
Thesufferer terry57082
Posted
Thanks for the support, terry.
I hardly ever use the word "lonely" actually. I usually use "alone" and it (being alone) is something that I don't mind at all and I often choose to be, especially because of how most people are (inconsiderate, insensitive, show no sympathy or at least understanding....). My problem is that I have severe anxiety and being alone can and does make things a whole lot worse for me but I still deal with things on my own even though I know my body is being destroyed from the poison of always being anxious and stressed.
I had a friend who used to always call me "lazy" because I couldn't work regular hours because of my severe depression (have suffered from depression for all of my adult life) and anxiety. Almost non of the "friends" I have -I have only a couple actually- can or are wiling to understand depression. My own sister refuses to believe in anxiety or depression. No such a thing, she says !! No. I just "choose" to be sad and worry about things...because I like being sad and miserable, I guess ! That's why I prefer to stare at the wall 24 hours than deal with people like that. But we're supposedly "social beings" and yes even I wish to see someone who's understanding and compassionate.
But yeah, MOST people will NEVER understand you nor will they really feel much empathy for others. That's just how most people are....unless of course they suffer the same thing you're suffering then they might understand.
I'm just sick and tired of everything.
terry57082 Thesufferer
Posted
I am so sorry, but I do know how you feel. I am on meds for depression and anxiety myself. I would stay inside and never go out if it were up to me. But I force myself to do what needs to be done because of four other people in our household that need me and some of my remaining family that do understand me and don't judge me. But, believe me I have been in that same deep dark hole that is comfortable and hellish at the same time. But, at the time when I am in that hole I don't see a way out and some times, I don't want to find a way out, I just want it all to go away. That is something that I have really had to fight. Fight with me....We can do this! I have a great therapist that has helped me as well. Take heart there are people to help, even though we have to wade through the sewage to get to them. Hang in there, I need someone that I can b***h about this stuff to that understands.
Thesufferer
Posted
Thanks, terry.
Yes. That's how I feel. I would lock myself in if I could. I lost my desire for just about everything in this world long time ago -long before this damn illness. Now it's only gotten worse and life has just gotten even more bland to me.
I'm not taking any meds for depression. I've tried just about everything -although always low doses- but I never felt like they were of any help. I'm not sure if I really want to try higher dosages. From all that I've read about antidepressants, they can be more bad than good -although they almost never want to tell us this- and often they need to be taken for life or you'll relapse...and they simply don't work for all, and at the moment, I can't afford the extra expense.
I've only seen a social worker like 4 or 5 times and I'm not sure it's going to do much but at least it's someone that I can talk to who isn't going to think I'm just lazy or making things up.... I might start seeing her again.
I'm sure there are people out there who care and who are willing to help but I just don't have the desire to look. I'm just so tired and beaten to want to do anything.
I don't always come here because sometimes I just want to forget it all and I'm too scared to read about what some are going through but then I come back because I know we all share the same problem and it's where I can be understood.
I feel like it's a nightmare that I can't wake up from.
I hope you have a good day.
terry57082 Thesufferer
Posted
I think it would help to the social worker again. I agree with you on many of the points that you have made, but like you said sometimes reading about it and dwelling on it makes it worse, so I don't go on here a lot. I just felt a kindred spirit in you, and I want to help you help yourself as much as possible. I am going to see my therapist again, because my black hole is starting to envelope me again. The holidays are always the worst.
Take care of yourself, okay
Thesufferer terry57082
Posted
Thanks again, terry. I appreciate the help.
I really don't know what to do. I don't want to come here but not having someone to talk to (in the real life), and the hope of reading something good, or at least something that's not so bad here on the forum keeps bringing me back.
For me, what's making things worse (as far anxiety) is that I've just got an echo done and in a month they're doing another CT scan and a breathing test. So, that's made my anxiety go through the roof. Also, I'm having some symptoms that I can still get no answer for (from my gp or the lung specialist).
I'll probably make an appt to see my social worker just for the heck of it.
Take care.
terry57082 Thesufferer
Posted
Not sure if you have checked in your area but there are support groups that you can meet with in person that helps as well. I get all the anxiety, fear and apprehension, but we have to keep fighting. It is very hard to do, I'm not just spouting off at the mouth. Good luck with all your tests and take care of yourself!
gina1970 Thesufferer
Posted
Just know that your not alone. The only ones who would understand what you're going through is people like us who have this health issue. I don't have any one to talk to other than here. Which to me will do for now . But being able to meet others who suffers from sarcoidios would be great.
Keep your chin up.
Gina
renee23357 terry57082
Posted
Hello, Terry. Sorry to hear of your discouraging experiences. I was recently diagnosed with sarcoidosis. Prior to the official diagnosis with a biopsy, I had no idea what was wrong with me. Doctor kept saying it was bronchitis, but after 6 months of fatigue and coughing, I too became discouraged and confused. Ended up in the hospital and had a great team of doctors trying to figure out what was wrong with me. I am on disability too. I don't feel guilty. When I can, I try to be useful and bring happiness to people in small ways like giving little things I've made to friends and strangers...like over worked store clerks. You should see them brighten up when they receive an unexpected little craft out of the blue. I make beaded bracelets . It's a little eccentric, I realize , but it's uplifting to see others smile. Some people even will linger to tell me their stories of how much it meant in a time if need. Not everyone is a craft oriented person so please understand I'm not suggesting that. Just saying we ALL have worth and being ill and on disability does not mean you aren't special and have no purpose. I hope you find a friend or support group that won't judge you and appreciate what treasures you have in your heart. Not everyone sees making money as a measure of our worth. There's not enough kindness in the world, so just passing on kindness is a real gift. A smile for someone in the waiting room...plenty of sad people there. Listening to someone's worries. So many ways to offer the healing balm of sweetness in a world that's too rushed and too worried and pressured. So maybe the disability is an opportunity to bring a different perspective to others. Instead of thinking of yourself as disadvantaged, perhaps seeing yourself as being uniquely positioned to offer peace and patience or what ever. Oh, hope this doesn't sound too philosophical...oh it is, I know, but my heart goes out to you for being too hard on yourself and I'm sad to hear others judge you. Not everyone is so judgemental and there are folks who would see your worth in your unique needing-to-rest-and-heal position.
The hardest thing for me is judging myself. I still set goals to do things and when fatigue prevents it, I sometimes panic and feel overwhelmed by things undone...mail, dishes , little things. I keep reminding myself that my worth isn't based on the list of achievement such as completed chores, or money made. It is more valuable to resonate kindness to my body, my mind and heart and to every person who comes around.
I hope you feel better and most of all be kind to yourself. We are about the same age. I've been goal oriented and worked most my life, but hey, life is for living in a thousand unique ways. The modern western work ethic is just one small custom. It's not the only perspective. Hope you find a new way to see yourself as a wonderful person.