The 'Any illness or disease or problem is bad' and its awareness thread

[g0ne]

I know this is a roleplay site, but... it would be nice to have some sort of input from anyone, so...

 

Anyone on these forums ever had to deal with autoimmunties?

 

I was diagnosed with SLE when I was 18, but have had it for a while before that. And as anyone with a chronic invisible illness would know, life is now a consistent war. Despite everything, I try to be strong enough to stand up to it, and to continue fighting, but sometimes even my courage wanes. 

 

I may not win against lupus, but I sure as hell ain't losing to it either. 

 

It's just that... nowadays, I'm dealing with a bad flare up. And college. And while my performance in the first half of the semester was good enough, now I'm having a tough time  doing simple math. 

 

The worst part: You don't look sick. And so nobody can comprehend what's actually going on.

 

My apologies if this seems like a rant or childish behavior, but it feels better when you can talk to others.

So, um, hi! I'm a lupie and I'm not scared to admit it. 

[Raelas]

I had to look up what it was! I'm not ashamed... I didn't know!

 

I'm sorry you have to live with such a thing though and its great to see you be so positive and active! Don't let it get you down, chin up always!

 

There are always nice people on here who can brighten your day should you need it... same goes for in game too!

[DreamedReality]

Stuff behind tag cuz long and ya.

 

There is a blood disorder that runs in my father's side that I ended up with. It has no name of it's own but the basic jist is that my red blood cells are misshapen. But not so bad as to qualify for sickle-cell.

 

Those of us that have it end up with an auto-immune response after some kind of childhood illness. Our spleens start attacking and killing these misshapen red blood cells en masse causing anemia. It manifested for me when I was about 3 after I caught whooping cough. Thankfully an experimental surgery of removing the spleen stopped the auto-immune response. That happened when I was 10. The docs gave my mom a 50/50 chance of the surgery working at the time.

 

But ya... I understand. It was rough growing up since I was so weakened thanks to the disease and the fairly high levels of steroids I had to be constantly on. There were large chunks of that time where I was going to get blood drawn up to three times a week, getting blood transfusions, and my spleen was so swollen I was almost on bed rest for fear that it would burst. No recess. No P.E. No playing outside after school. Couldn't go to a friend's house. None of that.

 

There were times when a bad flu or sickness was going around the school that I'd get pulled from classes because they didn't want me catching it. When I did get sick I usually got it bad and took longer than the other kids to recover. It... was hard keeping/making friends. And none of the other kids 'got it' since I looked fine to them. There were other kids (and even parents and teachers!) that would accuse me of 'faking it' to get attention and to get out of P.E.

 

I know I got very very lucky with my autoimmunity. Most don't get an 'easy fix'. I'm always at risk of something triggering another response and antibodies taking up the fight in place of the spleen but so far (~19 years sans spleen) that hasn't happened.

 

 

Annnyway. TL;DR: I understand. *sends hugs and chocolate* The flare-ups are -horrible- and I hope your current one settles back down for you soon. I hope whatever meds you're on continue to work for a long time. Hang in there!

[Zhavi]

I haven't, but one of my kinda coworkers (she's in a different building, but same non-profit) has lupus and crohn's and at one point a cancer scare. It's possible she has other stuff wrong with her that I'm not aware of (I'm not super close with her), but from everything I've heard, it's rough.

 

Communication is always important, but it's doubly so for you. She's had to be very upfront with her supervisors, and with the non-profit, and as a result she gets a little more leeway to deal with medical emergencies and flare-ups and the sometimes seemingly endless testing. For you, that means being up-front with your professors. It's a chronic thing, so that means at the start of the semester you should send an email or have a chat explaining that you have this thing, and you can bring proof, but if you get xyz happening, you might need some leeway.

 

Hell, I know all of the professors I've had have it stated in the syllabus that there will be few exemptions from stuff -- except when it comes to genuine medical emergencies or difficulties.

 

Yours definitely applies.

 

And I know if you're anything like me, you're going to want to keep struggling and flaming out without asking for help. Maybe you don't want the pity or the implication that you're not strong enough.

 

Those feelings can be good when it comes to pushing yourself, but they can also be bad. Very, very bad. Everyone deserves a break sometimes. You are no exception. Communicate with your professors, don't be afraid to get a little extra help when you're getting pummeled by things you can't control. Yeah, true, you might get a hardass here or there who is misanthropic and wouldn't give a shit even if you were suddenly literally unable to physically complete the homework -- but I'm willing to bet such asswipes will be the vast minority.

 

I wish you the best. <3

[Kellach Woods]

My co-worker and good friend recently (like... a couple of months ago) found out he had lupus, he'd been getting treated for a year and a half and they caught it early on enough that there's a good chance that he'll avoid a lot of the complications.

 

Took 'em a year and a half to identify the fact that it was lupus but, y'know.

[g0ne]

Omigosh!!

 

Thank you everyone for the kind words! 

 

:love:

[g0ne]

My life is currently in one hell of a mess... I'm so lost and confused and I see no way out of this predicament. All the while, my health keeps getting worser and I have to deal with more stress...

 

*drained of all positivity and happiness...* :cry:

 

It's just... I feel happy talking to you guys...

[Cassandra Lachance]

I don't have any autoimmune diseases. I've had other significant problems for a while. I won't go into specifics since any comparison is ultimately pointless, but my point is that I know what it's like to feel like you're dealing with something that will never go away. It can be agonizing, and I wish there was more I could do to help, but I'll just say a few things.

 

Don't apologize. It's not a rant, and it's not even remotely close to childish behavior. What you just did is the smartest thing you can do - talking to people. 

 

Your life, and your experiences, are yours alone. People can tell you how inspiring your story is, and even commend you for your efforts. And they mean it. And it's nice to hear. But truthfully, no one will ever know the effort you have to put into everything, and the lengths you go to to be able to live your life. No one but you. When you feel lost and hopeless, when it feels like you can't take another step forward, try to think of all the steps you were able to take already. Remind yourself of the worst moments and the courage it took to keep fighting after them. Draw strength from that. Because you can do it better than anyone else can.

 

But while that's all true, that doesn't mean you have to lock all of it inside, or that you have to do it all by yourself. Even if nothing anyone says can make your pain go away, sometimes even a simple conversation about nothing in particular can keep your mind off of it. More than that, talking to others is really the only way to understand that other people are often struggling with things that have never even seemed like a problem to you. That other people are suffering too, and dealing with it. Which leads to what might be the most important realization: that you're not alone. That goes for your post too, you're probably helping others more than you know, by the simple fact that you're sharing your problems. Thank you.

[Melodia]

 

But while that's all true, that doesn't mean you have to lock all of it inside, or that you have to do it all by yourself. Even if nothing anyone says can make your pain go away, sometimes even a simple conversation about nothing in particular can keep your mind off of it. More than that, talking to others is really the only way to understand that other people are often struggling with things that have never even seemed like a problem to you. That other people are suffering too, and dealing with it. Which leads to what might be the most important realization: that you're not alone. That goes for your post too, you're probably helping others more than you know, by the simple fact that you're sharing your problems. Thank you.

This ^ Rep bump and glad to know both of you *hugs*

[Zhavi]

Deep breaths. As Cassandra said, talking is the first step. Tackling big problems all at once is never a good idea; break it down from easiest to manage to most difficult. If they are significant, chances are you're going to have to search for aid options (possibly more than you may have already done) -- in which case your best bet is to find a friendly, experienced worker who you can sweet talk/schmooze into doing more than just telling you 'I'm sorry, we can't ___'. Generally speaking, there's usually a little more such workers can do, but digging deep into their resources for every person who crosses their threshold burns them out, longterm, so you have to be that special person they're willing to go above and beyond for.

 

But most of all, deep breaths. Write out the things you need to do, or the problems you need to work out, and break them down into smaller pieces. Once you do that, sometimes it feels much more manageable (not everything works for everyone, of course, but feeling like you're doing something is better than doing nothing). Most of all, watch how you think and talk about your problems. Saying things like 'but I can't' or 'there's nothing else I can do' is a self fulfilling prophesy. And I know that yeah, sometimes you do feel like you've hit rock bottom and you're totally and completely stuck -- but it is extremely rare for that to actually be the case. More often than not, it's the feeling of solitude and helplessness that makes people feel that way. So, again, as Cassandra said, share the burden. Sometimes just having one or two other people helping you compile resources and handle problems can make a world of difference.

 

You can do this. Keep trying. Don't give up.

 

<3

[g0ne]

Thank you once again, everyone, for the kind words. See, this is why I talk to you guys!

 

Don't worry, I'm not ever giving up. If I wanted to do that, would have done so a long time ago. It's like I said, I may not win against lupus, but I am not losing to it either. 

 

It's just that sometimes I get drained of my HP and PP (happiness points and positivity points, XP) and so I need someone to replenish them, and then I talk. And I'm persistent and annoying. I don't shut up until I've finished talking.

 

To be quite honest, as a lupie (person who suffers from lupus) I feel like it's my responsibilty to raise my voice, and make people aware, not only about what I have to go through, but difficulties and problems people go through. Because not everyone is brave enough to admit that they are very troubled or very sick, it's only natural to be scared. And even though I have problems of my own to deal with, I am always ready and poised to help other people to the best of my abilities should they choose to confide in me, and they take precedence over me.

 

Thing is, when you get sick, you look at the big picture, but more than that, you look at the small little details most others miss. You look at life's little happinesses and don't look for big things, every day, every minute thing becomes a gift, and every gift one to be cherished and not taken for granted. It's true life becomes a battle, a never ending war, but despite everything, you realize: life is truly worth living, it is truly beautiful, no matter how bad. There are setbacks, there are problems, there's the fact that you can never be normal again, but it's your life, and it's worth every bit. As long as you stand by yourself (yes, there will also be people, loved ones, friends, family who will stand by you, but most important is that you are on your side) and stay positive in the face of negativity, you're living. And life is worth everything.

 

Most people don't understand, but to the ones that do, and to the ones that would try to understand, I am ever grateful, and am happy to know that you are there. So thank you, from the bottom of my heart. 

 

For those who read all of this, you guys are awesome. Thank you. For those who tried reading it, but couldn't find themselves finishing it, thank you for trying, it means a lot to a lot of people out there.

 

There is so much more I could say, that I want to say, but I have said enough for now. 

 

Love, 

A Lupie

[Perth]

I had never known anyone with lupus or any other such diseases from my small town. The only folks who had similar in regards to chronic problems was a young woman with epilepsy, whom we were always very concerned for considering that the high school was just littered with stairs and she'd most often seize between classes, potentially due to the large windows facing the sun. She wasn't even too certain herself. The only other folk was a young man who had ... I believe he told me Lyme disease. He never really sat with anyone at lunch because he ate at home, and we always invited him to just sit and talk with us if he'd please so he wasn't standing around and getting stared at by judgmental eyes. People who stood or sat alone at lunch were always viewed oddly. It was pretty sad because his attendance was very spotty, and one day he stopped coming in to school entirely. I think it was because he began homeschooling, but it always worried me.

 

Hope things smooth out for you. Definitely take Zhavi's advice on notifying teachers if you hadn't already, lupus sounds like something to be taken seriously and you'd do yourself no good working hard while you're flaring up.  Don't push yourself too hard, take it easy, and speak up any time you feel you need to!

[Reshie]

Eleni,

 

I do know how you feel and what you go through on a daily basis. I have an autoimmune disease myself. I have Dermatomyositis which, like lupus, is a connective tissue autoimmune disease but is also a piggy back meaning I'm likely to get other autoimmune diseases as I age. I've also been tentatively diagnosed with Sjogren's Syndrome but have never had the testing because it's supposed to be painful, expensive and treated the exact same way so they said not to bother. My disease showed up at the age of 20. I went through 6 doctors in 8 months before anyone knew what I had. Then I fought for three more months with a rheumatologist who told me I couldn't have the disease because I was too young even though all the tests said otherwise. I then went through three of those before finding one who did right by me by putting me on the correct medication and dosages.

 

I'm currently unmedicated so day to day is more of a struggle than it should be. It can be very difficult to admit that you're not feeling well or that you can't do something. I'm very independent and to admit that I can no longer put the dishes up or have to wait for my fiancee or brother in law to get home so I can make dinner because I can't move the boiling pot of water from the stove to the sink practically kills me. They are both wonderful because they understand what I'm going through and are accepting but a lot of people aren't because I don't necessarily look sick. I look strong and hale while inside I can barely move because of the weakness and pain. I can't be outside for any length of time because it feels like a cactar delivering 100,000 needles to my skin and then I feel like I've had sun poisoning for a day after.

 

Some days are better than others. I've discovered that I enjoy the smaller things, the things that most people don't even notice anymore. It amazed me how good it was to be able to walk up a flight of stairs after a year of not being able to do it. A kiss from my love and a meal I was able to make by myself mean the world to me. I don't feel like I take for granted things as often as I did and I am more optimistic. I try to see the good in life even when it's very clear a storm is coming. It might be raining now but that rain is cleansing and healing so once it's gone, everything will be better for it. Hell, even one of those crappy cheeseburgers from McDonald's can be heaven. I know I'm going to be sick as a dog from it later but it tastes so good... I enjoy it while I can.  It's those things, the small every day things, that keep me going. They keep me positive and moving. I refuse to lay down and let this thing control me. When I was first diagnosed, my dog Radar kept me going. He needed me and in reality, I needed him more. Now I have my family and our animals to keep it going. They need me so the days when even my own well being isn't enough, they are. 

 

I will admit it's nice having friends, though, who understand. My mother was diagnosed with the same disease three years after I was. We can discuss what's going on and it helps. I extend the offer for you to come to me and talk. If you want to PM me, I'll give you my Skype and we can build a support system. The same goes to anyone else who may be going through the same thing but not want to say something publicly. Please feel free to hit me up. I'm always willing to chat. 

 

I hope everyone has a wonderful day and can find the beauty in just one thing to brighten your day and maybe even someone elses.

[Mae]

While I don't have an autoimmune disease, what I do have is a particularly nasty strain of what is normally a very common virus (90% of the world's population contracts the normal virus strain before age 30, and most become immune to it after that first bout) that I contracted when I was eight, and I'll carry this virus for the rest of my life. I typically have one resurgence of it a year, but I've gone as long as two years before 'getting sick' again. The rest of the time, it lays dormant in my system. 

 

When you get it for the first time, or when it's resurging, all you feel is slightly unwell. Tired, maybe a little achy. The 1# treatment for the virus (it's resistant to medicines) is rest and lots of sleep for up to two weeks, which is pretty much what the virus is going to make you want to do anyways before it recedes on it's own. But if you push yourself -- not enough rest, being too physical -- you start risking getting complications. And that's the thing with the virus; you don't look sick, and if you don't know you have the virus you often don't even realize you're actually sick, until the complications come along. Liver and kidneys shut down. Lungs fill with fluid. Lymph nodes in the neck swell to the point of suffocation. Spleen enlarges to where it can burst.

 

I know the virus doesn't exactly compare with lupus and it's effects, but I know what it's like to have people not understand that you're sick. My father, who knew I had the virus, got custody of me when I was fourteen and until I moved out on my own I ended up in the emergency room at least once a year with complications from the virus because I "never looked sick enough" to him. Getting older, employers often thought I was being a hypochondriac when I started asking for time off when I was just feeling under the weather. Many of the doctors I saw didn't want to order the tests to check to see if it was the virus so getting the notes to avoid getting written up for attendance issues was rare. And it's hard, dealing with that sort of criticism and disbelief.  

 

I'm lucky to be in a place now where the only person I have to explain myself to is my husband, and he understands the virus. The worst I've been treated in the two resurges I've had in the last three years is him forcing me to wake up and stay up long enough to take meals and shower. Prior to that, he was always the one telling me it was okay if I called out of work and sometimes being the one to make that phonecall because he refused to wake me up. And that's really all you can hope for -- is for a few people to understand you and what you're going through, and be willing to help and support you through your bad times.

 

In the meantime, though, enjoy the little things that you can still do while having a flare-up. I collect little projects (lots of crafty stuff) to do when I'm sick -- stuff I can do in under an hour or can pick up and put down without a problem when I'm too tired to stay awake anymore. Some of these little projects even make me money (I once got $30 for what was essentially a handful of coffee filters and a few pieces of wire), so I get that as an added benefit to the sick times. I know lupus often means rather extreme joint pain... maybe a nice long warm soak in the bathtub can help? Bath fizzies and salts (even if you are a guy) are also super easy and cheap to make yourself -- worst you have to do is measure and stir, and a bit of research can come up with things to add in that could help ease pain or relax you (check with doctors first!).  Also, eat well. Not always the 'eat super healthy' angle that might get pushed on you, but the stuff that will actually make you feel better both emotionally and physically. Have a day where you're not feeling great but can still manage going into public for a couple hours? Find a salon/barber/whatever to get a haircut. I guess in short, when you're feeling cruddy, don't be afraid to do your best to pamper yourself -- emotional health is what's gonna keep you going even when your physical health isn't looking too good.

 

Best of luck, now and in future hard times. 

 

You're not alone.

[g0ne]

Alright, after much contemplation, I have decided to change the name of the thread and its purpose.

 

To start off, there are a lot of people in this world who suffer from various illnesses and diseases and problems or anything bad of any sort. So, I have decided to make this thread one where you can share your experiences and things you have seen and anything else that you might want to share that can even vaguely be linked to this thread, BUT DO SO ONLY IF YOU FEEL COMFORTABLE WITH IT. 

 

My wish and hope is that this thread will be able to create a better general awareness of problems that people face, and what can be done to help make them genuinely SMILE.  

 

I'm not sure if I was descriptive enough, but I hope everyone understood what I was trying to say. 

 

And erm, that's pretty much it. This thread is anyone and everyone's to utilise.

[Nebbs]

Fortunately I have not had anything to compare. But I can give hugs and RP and virtual cake.

 

*hugs*

[Delilah Scythewood]

I don't have autoimmune myself, but a plethora of other things to deal with like severe progressive hearing loss, thyroid issues, gallbladder issues, and seizures from my childhood that have stretched onward and affected my adult life. Won't get into details in a public forum but they do all suck so many hugs your way!

[g0ne]

I love it when people think that by giving me some help they will be unfair to other people. News flash. The other people don't have a painful mixture of lupus, fibromyalgia and what not to deal with. 

 

It's funny how it takes days for you to regroup and gather your strength again, and then five minutes with a negative person shatters all that hard work. 

 

It's even more hilarious when you're being denied basic rights such as a happy, healthy education just because you don't look sick. And because it would be unfair on the other student who fails his courses just because he can't pass them. Or maybe you shouldn't have picked education as a route because you are sick and you can't handle it. 

 

Not only does my illness cripple me, but being berated because I'm ill does wonders too. Why are you comparing me, a broken, battered zombie, to a healthy normal individual? I'm not normal. I'm not healthy. I don't remember what it is to feel good.

 

Gotta love living the spoonie life!

 

Thanks to anyone who took the time to read this, and thanks to the RPC for not judging me because I'm a lupie.

 

(Okay, I'm done ranting. For now.)

[Tara]

I love it when people think that by giving me some help they will be unfair to other people. News flash. The other people don't have a painful mixture of lupus, fibromyalgia and what not to deal with. 

 

It's funny how it takes days for you to regroup and gather your strength again, and then five minutes with a negative person shatters all that hard work. 

 

It's even more hilarious when you're being denied basic rights such as a happy, healthy education just because you don't look sick. And because it would be unfair on the other student who fails his courses just because he can't pass them. Or maybe you shouldn't have picked education as a route because you are sick and you can't handle it. 

 

Not only does my illness cripple me, but being berated because I'm ill does wonders too. Why are you comparing me, a broken, battered zombie, to a healthy normal individual? I'm not normal. I'm not healthy. I don't remember what it is to feel good.  

 

Gotta love living the spoonie life!

 

Thanks to anyone who took the time to read this, and thanks to the RPC for not judging me because I'm a lupie.

 

(Okay, I'm done ranting. For now.)

*hugs Eleni tightly but gently* I'm sorry hun...rant as long as you need to, we'll listen. 

 

For those who don't know...the 'spoonie life' is living with a limited amount of resources available to you day by day. A normal, healthy person has unlimited 'spoons'. Those of us who live with something chronic don't have unlimited spoons. We have to pace our 'spoons' Anything that a healthy individual can do without thinking we have to think 'will this take up a bit of our resources?' and go from there. Sometimes it's a toss up between eating and sleeping for our last spoon. And we don't always start with 10/10 spoons. No, we start at 5/10 or 2/10. Those are the bad days. The good days we have 8/10 or 10/10 or on really really rare cases 12/10+. 

 

So, um, yeah. Back to cuddling Eleni. *cuddles Eleni* I can't offer any words of comfort because I don't really know you, but I can almost promise you that after this rough patch, it'll get better. *goes back to cuddling*

[13uddy]

Eleni ( *hugs* Hi Eleni! ) already knows a little about my health issues, and I've mentioned bits here and there in various topics, so if I'm repeating myself I'm sorry.  

 

The short list includes:  

 - Diagnosed with Acute lymphoblastic leukemia when I was only 4 years old.

 - Have many, many issues stemming from both the cancer itself and the treatments.  Among them are multiple heart failures, lost most of my ability to hear (I can technically hear some sounds, but I'm legally considered deaf.  So I can listen to some music, I'm just not hearing all of it and I have to look up lyrics to know what is being said, and that is if I can even hear them being said at all), no spleen and a compromised immune system both, constricted (and damaged) esophagus, minor brain damage and many, many other things ranging from chronic migraines to weaker bones and so on.

 - I'm allergic to some thing(s) in human blood.  There is stuff in almost every other person's blood that causes serious problems if I need a transfusion, and any potential transfusion has to be treated before I can get it.

 - More recently, I've developed some issue with my nerves (not to be confused with panic attacks, which I also have).  At first my doctors thought it was Fibromyalgia, but extensive testing is still inconclusive as to what the problem actually is.  My legs are hit the worst.  I really don't know how to describe it accurately, but it is sort of like a very intense feeling of "pins and needles" when your leg falls asleep coupled with both numbness and constant pain.  Standing and walking are extremely difficult even with help of a cane or walker, but I'm too stubborn to give in and just use a wheelchair all the time.

 

 

So yeah, that is the short list.

 

 

I try not to let it get to me because, honestly, what is that going to accomplish?  But I'm only human, and some days I'm going to be overwhelmed just like anybody else.  

 

 

There are some benefits to it all as well.  I realized that I accomplished my life-long dream of being a mutant like in the X-Men comics on a technicality (unfortunately, no spiffy powers, though), my speech impediment from my hearing loss is often mistaken for an accent (a lot of people assume I'm British, though to be fair I do watch a lot of Doctor Who, Red Dwarf and other British TV), and I get to say weird things like "The doctors said I wouldn't live to see age 11, and I just turned 36 in October.  So either I made it or I look REALLY good for a dead guy!" and things like that.

 

 

One thing that really bugs me, though, is when people say things like "You are very brave!" and things like that.  No, no I'm not.  I just don't know anything different than this.  I don't have a "normal" or "healthy" to compare to, this has been a part of my life for as far back as I can remember.  If I'm anything, I'm stubborn, possibly delusional.  :lol:

[Miss Gaz]

*gives everyone here a big hug*

I know my mental illness and physical ailments don't even begin to come close to these so I offer hugs with Nebbs.

[Azureus Scipio]

I too have an Autoimmune disorder.. but mine is of the much more visible nature

Just look up Psoriasis it saves me from much explination... but needless to say I know how you feel! but remember to love yourself!