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View Full Version : Sometimes I just want to be somebody else



Mica
10-02-2012, 08:59 PM
I think that goes through my head at least once a day, if it's a good day it's only for a second. Ive been in a funk for the past 4 days, don't think it's depression just feeling a bit down. It started with the thought "If I didn't have lupus..." dangerous thought for us sick people. I don't know it's stuck in my head now, and it's making it worse because I am thinking about how small my world is right now. I really hate this disease sometimes especially because I have been stuck in an in between area where i'm not quite in a flare and i'm not feeling well for close to 2 years. I had to drop out of school and can't work I have no life anymore. I'm a social person and I like being out and doing things. I have always been the person to get out and do things and want to see and experience life. Always just wanted and been like that, before I got sick I wanted to just join the air force the day I turned 18..Okay so after lupus I was a bit upset that I couldn't do something I have wanted to do for as long as I could remember. I wanted to be a pilot and still do, wanted to take after my grandfather who was a pilot and my mother who got her pilots license, I was and am still upset that my cardiovascular can't handle that. I want to travel I want to see the world to study abroad, to ski, to scuba dive, to go camping again, to just be normal again. It feels so suffocating especially when I have practically no life. It makes my chest and head hurt just thinking about it all. And I feel like such a hypocrite because I have given advice to fellow younger lupus people on here that you eventually get used to and accept the lupus your life and limitations and you really do most the time. But man sometimes it sneaks up on you and it sucks it sucks so bad. I know logically that this will pass and things will get better but my poor heart hurts and breaks every time I go through this mini breakdown.
I look at my twin sister, my healthy pretty twin sister and want to throttle her because she is settling in life and her goals for a boy. I tell her you have a break from school go take a couple a days off of work an go camping, go stay in some crappy hotel in the Osarks or the beach, I want her to go make a story a memory live her young life while she still has it. And my frustration of her not doing things for her self because her boyfriend is a mamas boy and doesn't like to leave town or get out and she wont do anything without him just adds to my crappy mood.
No i'm just whining now aren't I...I write this I on here because I need to get this out sometimes and I would never ever say this to my mother or anyone else that I am close to. I guess I am tired of being sick and not getting better and i'm really tired of living my life on the internet because I can't do anything else right now.

debbie-b
10-03-2012, 03:13 AM
Hi Mica,

Sorry, that you feel down.
I do not suffer from depression ( thank God), but I do have a down day, once in a while. I think we all do. I usually whine and mope around for a day or two, but I get over it.
Hopefully it will be the same way for you.
Chinn up.

Debbie

Phoenix2369
10-03-2012, 05:00 AM
Mica,

I'm pretty sure we've all felt like this at one point in time. I know I myself throw frequent pity parties and have a good shower cry. (where I cry in the shower so no one can hear me)

It is hard knowing that so much was taken from you. Sometimes you wake up, struggle to get out of bed, and while taking your morning pile of pills you wonder why you got dealt such a crappy hand. I make remarks a lot about my crappy gene pool.

But then I think about the people who have it so much worse. Yes, we have it hard. And yes, sometimes living with lupus makes me want to trade with someone else. BUT I'm alive. I was given today and I'm going to do whatever I can to be happy.

You deserve happiness and you will find it once you are able to let go. There is no point in dwelling on what could have been. Look forward, the past and past wants will do nothing but bring you down.

Find ways to still do what you want with a lupus twist. Go camping. Just make sure the park you choose has a close warm shower. Bring all of your medicine. Spray yourself hourly with suntan lotion. You don't have to worry about west Nile the plaquenil will handle that. :)

I still go to the beach. I just go for an hour or two. Literally have my friend stand me in the shower and spray me from head to toe with suntan lotion then I put on a thin long sleeve shirt and a long flowing cotton skirt over my bathing suit. The hippie look is in. No one will be any the wiser.

To sum things up I'm going to share a line my mother picked up while she was getting chemo for a cancer they told her she couldn't beat. "You have your sickness, this sickness doesn't have you." It only controls your life and your feelings because you let it. You are here, today is another day. So wake up, struggle out of bed, take your medicine and walk with your head held high. You're a fighter, a survivor, this will not beat you. Your life can be just as beautiful. You just need to know where and how to look.

Mica
10-03-2012, 10:26 AM
Mica,

I'm pretty sure we've all felt like this at one point in time. I know I myself throw frequent pity parties and have a good shower cry. (where I cry in the shower so no one can hear me)

It is hard knowing that so much was taken from you. Sometimes you wake up, struggle to get out of bed, and while taking your morning pile of pills you wonder why you got dealt such a crappy hand. I make remarks a lot about my crappy gene pool.

But then I think about the people who have it so much worse. Yes, we have it hard. And yes, sometimes living with lupus makes me want to trade with someone else. BUT I'm alive. I was given today and I'm going to do whatever I can to be happy.

You deserve happiness and you will find it once you are able to let go. There is no point in dwelling on what could have been. Look forward, the past and past wants will do nothing but bring you down.

Find ways to still do what you want with a lupus twist. Go camping. Just make sure the park you choose has a close warm shower. Bring all of your medicine. Spray yourself hourly with suntan lotion. You don't have to worry about west Nile the plaquenil will handle that. :)

I still go to the beach. I just go for an hour or two. Literally have my friend stand me in the shower and spray me from head to toe with suntan lotion then I put on a thin long sleeve shirt and a long flowing cotton skirt over my bathing suit. The hippie look is in. No one will be any the wiser.

To sum things up I'm going to share a line my mother picked up while she was getting chemo for a cancer they told her she couldn't beat. "You have your sickness, this sickness doesn't have you." It only controls your life and your feelings because you let it. You are here, today is another day. So wake up, struggle out of bed, take your medicine and walk with your head held high. You're a fighter, a survivor, this will not beat you. Your life can be just as beautiful. You just need to know where and how to look.

I know, in my mind I know these things and have accepted but sometimes like now it's hard. I get sick going to the grocery store no way I could do a beach trip. LOL
I feel kind of bad for not mentioning this but I am blessed for the things I have done and experienced even after I got lupus. I have spent summers in Florida California, and Washington so it wasn't like I have never seen a beach or spent weeks hiking in the Florida marshes or spent months exploring the forests in Washington. I have been blessed to been gifted with a trip to Germany and so it's not like I was completely sheltered. I do get up every morning and I don't question my pills anymore. I guess I am just stuck right now in my disease so I am feeling a bit stuck in my life.

The Survivor
10-06-2012, 07:17 AM
I think that goes through my head at least once a day, if it's a good day it's only for a second. Ive been in a funk for the past 4 days, don't think it's depression just feeling a bit down. It started with the thought "If I didn't have lupus..." dangerous thought for us sick people. I don't know it's stuck in my head now, and it's making it worse because I am thinking about how small my world is right now. I really hate this disease sometimes especially because I have been stuck in an in between area where i'm not quite in a flare and i'm not feeling well for close to 2 years. I had to drop out of school and can't work I have no life anymore. I'm a social person and I like being out and doing things. I have always been the person to get out and do things and want to see and experience life. Always just wanted and been like that, before I got sick I wanted to just join the air force the day I turned 18..Okay so after lupus I was a bit upset that I couldn't do something I have wanted to do for as long as I could remember. I wanted to be a pilot and still do, wanted to take after my grandfather who was a pilot and my mother who got her pilots license, I was and am still upset that my cardiovascular can't handle that. I want to travel I want to see the world to study abroad, to ski, to scuba dive, to go camping again, to just be normal again. It feels so suffocating especially when I have practically no life. It makes my chest and head hurt just thinking about it all. And I feel like such a hypocrite because I have given advice to fellow younger lupus people on here that you eventually get used to and accept the lupus your life and limitations and you really do most the time. But man sometimes it sneaks up on you and it sucks it sucks so bad. I know logically that this will pass and things will get better but my poor heart hurts and breaks every time I go through this mini breakdown.
I look at my twin sister, my healthy pretty twin sister and want to throttle her because she is settling in life and her goals for a boy. I tell her you have a break from school go take a couple a days off of work an go camping, go stay in some crappy hotel in the Osarks or the beach, I want her to go make a story a memory live her young life while she still has it. And my frustration of her not doing things for her self because her boyfriend is a mamas boy and doesn't like to leave town or get out and she wont do anything without him just adds to my crappy mood.
No i'm just whining now aren't I...I write this I on here because I need to get this out sometimes and I would never ever say this to my mother or anyone else that I am close to. I guess I am tired of being sick and not getting better and i'm really tired of living my life on the internet because I can't do anything else right now.

Mica,

I'm so sorry that you get so sad about your lupus. I too wanted to join the airforce because there is so much opportunity to be gained from joining the military. I literally cried when the recruiter told me that I couldn't join because of my lupus and kidney failure. But you know what, there are so many other goals you can work at. I know its hard to do that when you wanted to do the airforce so bad but you should never give up hope, ever.

jmail
10-06-2012, 09:37 AM
I can only imagine what it would be like to have this at a younger age. The last three years especially have been more than frustrating for me, and I would probably have ignored any "restrictions" when I was in my twenties or thirties and would probably have been dead by now. I almost didn't make it as it was, though it wasn't because of disease, only my own stupidity... As a side note, I was rejected by the marines, army & navy for being too tall for flying *anything*, even helicopters. But I would have made a great "grunt"...

Anyway, I still try to do things, I just have to approach them a different way, and now that I'm older and don't "heal" so quickly, I have to do most things less often. I also have to rest-up more often. I also have to pack a separate grip for all my medical stuff, nebulizer, meds, inhalers, etc... and I have to be sure and take all my medical information with me, so that I have all my doc's phone numbers with me. I'm also now slathering on the sunscreen everyday, not just when I know I'm going to be in the sun. It's definitely taken me some getting used to this, and trying to ignore the stares a person gets sometimes, when they're out on a hike, or on the beach with long sleeves and a boonie hat can be strange, but... ya do whatcha gotta do. I haven't a clue as to what you can do about friends and family. I generally ignore most comments from folks now, and do what I can when I can. My being older, they call it "eccentric" behavior, and I can get away with it... You definitely have to approach life from a new angle.

We'll be praying for you.

magistramarla
10-06-2012, 09:54 PM
Mica,
We all know this frustration. I have friends who are near my age (55) who are out biking, jogging and doing all sorts of fun activities.
Some days I feel really jealous of them.
I start every day with a list of things that I want to get done that day. I've learned to prioritize and get the most important things done.
Some days, I get one or two things done before I land on the couch. On really good days, I get through most of my list.
I still have fun experiences, but I have learned to plan very carefully so that I don't overdo it too much.
I know it must be even harder when you are young - we definitely understand here.
Hugs,
Marla