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.Â
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. Â
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.Â
You're not alone.
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. Â
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.Â
You're not alone.
