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Just a rant

I am tired. I am tired of being tired. I am sick of being sick. I am tired of watching everyone else work all day long and make plans after work and feel great. What does that feel like because I have forgotten. I work. I suffer. I suffer. I work. I put a smile on and no one there knows what it takes to work the day. I lead two lives. The person they see at work is smiles, polite, proficient, business like, looks very well. The person beneath is hurting, crying, suffering. I try to be like everyone else. But I am different. I carry an extra person with me all the time. The sick me, the old me. I feel like I lead two lives and are two different people.

No one knows what lies beneath. No one knows the pain. (except all of you)

Oh, and yes, I started back on the Immuran. It felt great for that time to, what two weeks, to not take it. I thought there is the old me again, not many pills to take now, maybe I can even have a drink of alcohol and not worry about this and that my meds...... but I am back on them.

So the day to day, hour to hour, minute to minute struggle..... the two lives I live, how long does that continue on......forever......until I close my eyes and they never open again. Forever seems like a long time and I am not sure I have it in me anymore. I am not suicidal. I love life. I think it is precious. I want to live, I want to experience a lot. I thought I accepted this whole Lupus thing and thought I was moving on. Maybe I was, maybe I wasn't. I don't know anymore and I don't even know if I care anymore. Try to figure it out? figure what out? Life is heartake. Life is change. Life is hard. But it also is love. I count my blessings. But see? I am two separate people.
 

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The Other Illinois Tammy
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Paula,
Your rant hit so close to home You brought tears to my eyes. You could not be more right about two lives. Forever is a long time and love does not even seem to last forever any more, how can a disease that we did not even ask for last that long? You are right what does it feel like to do something besides work and sleep? I think mine is that 42 is just around the corner and I have not done really anything with my life. It seems that all the child dreams went away the day I was told I had lupus. They were replaced with thoughts of getting through the hour, the day, or the night. You are far from alone in your feelings and your thoughts. Maybe that should be a new topic work and sleep and nothing else lol. I hope you feel better soon, I know this is my life forever. Wish better for you.
 

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Pollianna
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I undersatand paula. I look the picture of health and work 12 hr days, 5 days a week and 8 on the 6th. I run a house alone with no help from anyone. No one knows how hard it is for me and how when they don't see me I am flat on my back on the sofa every sat nite after work while everyone is partying :sad:

I have no family at all except a daughter who hates me for supposedly letting her down as a Mother by being so ill. My boyfriend died and to be honest, I haven't the energy or the inclination to get another although it gets so lonely at times.

Your not alone xxP
 

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Hi Paula :hug: :hug:

I hope the rant helped you, sometimes it does us good to get things off our chests.

I totally understand where you are coming from, i put on a front when i meet people, they ask how i am and i reply i am ok thanks, it just rolls off my tongue.

The first part of your post which reads i am tired of been tired, i tried explaining last week to my parents how i am so fed up of having to sleep when i don't want to, my body needs it and i can't keep my eyes open but I don't want to sleep. Some days i could fall out with myself because there is something i want to do or just spend some time with Martin (hubby) but i HAVE to have a nap. They said they understood but how can they ?????? only you people who suffer with lupus can truthfully understand.

I hope things get better for you, keep trying to talk to people who know what you are going thru and hopefully that will help.

Take care :hug: Jo :hug:
 

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Hi Paula,
I so understand where you are coming from....Lupus at times seems to put a hold on your entire life !
I too have a smile on my face when i feel awful but we always say yeh we are ok !!!
Only yesterday...my neighbour was talking to my husband about their forthcoming holiday and how much they are looking forward to it !! My husband has just had two weeks off and the furthest we managed was Southampton to Chichester...about half an hours drive !! that was it...all i could manage !!
And next door are travelling around Britain in their caravan with their two woofers !! If only i could do just a little of that !!
God...im wingeing now and im meant to be cheering you up !!!
Sorry !!!!!:blush:
I take one day at a time and see how i feel on the day....can't plan too much that way, but it works for me at the mo !!
I make a real effort to keep in touch with friends even if i don't feel well as they usually manage to make me laugh !!
I so hope you will feel brighter soon....it's tough i know but there's always something good in every day.
Stay positive....love to you
Ali:)
 

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:hugbetter::flowery: Hi Paula,

Im really sorry that you are feeling the way you are, I hope that since you poured your thoughts and frustrations out that you feel better.

I eventually decided that I was fed up putting on a false face and when I was feeling really bad one morning I went to work and did not act my other self. People wondered what was wrong and told be to cheer up and not be so sour, I then let rip that this is how I feel the majority of the time and was fed up having to think of everyone elses feelings and that I was going to focus on mine and if they couldn't handle it then tough on them.

I have to admit that I felt terrible after but I had enough. It is always worse when there are alot of people around as we all know there is always cliques.

Do what you feel you are comfortable with.

Hope things improve very quickly.

Sending you hugs & Kisses
 

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Paula:

I know exactally what you mean...my favorite rant here at home to hubby is "I AM SICK AND TIRED OF BEING SICK AND TIRED".

You hit the nail on the head with your post. And I am so sorry, however you are right only your compatriots here can really understand.

All I can offer you are my prayers for a better tomorrow and a soft pillow tonight!

Love Stephanie
 

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Dear Paula (and others, esp Pollianna, you sound really down)

I so know what you mean, and I so both empathise and sympathise. Sometimes it just gets you down so much you don't know what to do any more. It's so frustrating treading the fine line between staying positive and chipper so that people don't avoid you for being a whingebag and being honest enough to let people know that the reason why you are answering a bit shortly is that you are in PAIN ALL THE TIME and can't see them properly because you are so dizzy. I too feel there is a big shouty person inside a cheerful person sometimes bashing to get out.

I think it is good to a certain extent to be honest. You can say to people that you are having a 'not-so-good' (love the anglo-saxon understatement) day or that 'it's a bit of a struggle today' or something. I have had several of my friends say to me 'look, we'd rather you just told us that you hurt and that's why you're behaving a bit oddly than think we've done something wrong as we JUST CAN"T TELL!'

Thank goodness there is a group of people who understand (here) and to whom we can rant and whinge without fear of being judged.

All luck and may things improve,

xHatty
 

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((((((((((Paula))))))))))

I understand exactly how you feel and I am sorry that your feeling like this. No one understands what we go through daily and no one really gets it, except us and those who suffer with daily chronic pain from a ai disease process.

Like you, I also put on the happy face and people often say to me, "You don't look sick". I am also 2 people, one on the outside of my house and the other inside the security of my own home.

It is exhausing to be 2 people and I don't work anymore so I am not forced to get up and go out everyday to earn a living. If I had to do this like you do god only knows how I would be now.

I don't know what your situation is but maybe you need to file for ssd and take it easier moving forward. I can tell you that I am on ssd and somehow financially we have made it work. We don't have extras or the finer things in life but it has taken a lot of stress off of me so that I can stay home and in bed if need be.

I want you to know your not alone in how you feel and I am sending you warm thoughts and gentle hugs. Keep your chin up and I hope some brighter days are ahead.

As for your daughter I am hopeful that as she grows up a little she will come to see you did the best you could given the deck of cards you were dealt. I have to guess she is still realitively young? Time will heal her heart and help her grow to see things outside of "her box".
 

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elisabethm
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Hi Paula i have just let my husband read your post reason being he said to me last week.That i am two people when our Granchildren are here i put on a diffrent face the happy go lucky Gran that does things for them.Not that i dont do things for him but i an not crabbit with them like i am with him so i Thank You For Your Post Elisabeth
 

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Hi Paula, Your post not only hit home but touched my heart. My usual reply when asked how I am doing is "I'm hanging in there." When I look in the mirror , I don"t know who those tired looking eyes staring back belong to!I still believe because of the lack of Lupus awareness, most people have compassion they just do not comprehend. Just taking a shower wears me out. I also had my husband read all the posts. Hope it will help him to understand why I have concerns about traveling and spending time on our boat. I had an opportunity to travel to England with my Dad last summer( my Step-mum had passed the summer before),but I declined. I was afraid I would have a flare up and that I would prevent him from enjoying himself. Lupus stinks, but we are stuck with it and somehow we have to dig deep within and try to make the best of it.
So Hang In There Paula and know you are not alone. Rosie
 
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