It may feel like something awful and unfair is happening to you when you hear you have a chronic illness. I know life isn’t fair, but it feels a bit much.
Time heals things they say. It doesn’t heal how you feel, but you learn to live with the ebb and the flow of your condition. Time and experience give you perspective; you form a relationship of sorts with your chronic illness. You would never call it a friend, that would be going too far. But you come to appreciate how you adapt to live with it and enjoy the good days so much more now.
You learn that there are positive aspects of living with your condition. Lupus has taught me to appreciate the simple things in life, those moments of small joys such as the sun on the flowers and how luxurious it is to spend time with friends. I’ve learned how important it is to take care of myself even when it would be easier to hide behind school and work. I’ve discovered to appreciate the things that make life easier, and that you genuinely do have to put your mask on before you can help anyone else once the masks come down in the airplane. I’ve also come to realize that if you don’t put yourself and your well being first, no one else will either.
Beloved is a different kind of man. He lays his cards out on the table, researching everything, and finds a logical path forward. He believes that when you can lay everything out, find patterns that allow you to find your way out of the maze.
He says that I’m not that different from him, that I can’t blame lupus for that. Lupus may have taught me to be patient (okay, I’m still working on this) and take risks when it feels right, but lupus has not taught me to move from A to B the way Beloved does. I have always been the kind of woman who throws the pasta on the wall to see if it sticks because when else can you throw pasta on the wall anyway?
Although I may have a blind spot when it comes to lupus, you can’t blame me for that; it has affected so much of my life, from dreams and lifestyle to schedules and hobbies.
So while he lays out the cards and sifts through the last set of lab results and symptoms to explain this latest flare, I curl up with a book and remind myself that this is part of what I love about him. He wants to solve the mystery of an illness that has no cure. He wants to say he knows how to hold this monster at bay. He needs answers, and lupus has taught me that this isn’t always the case. Lupus is a bit like the wind; it goes where it wants to when it wants to, and it takes pieces with it as it needs. However, one day people like him may find a way to control or tame lupus if not cure it.
I always pictured my life as one of spontaneity and whims. If an idea or thought struck my fancy, which required travel, no big deal, I would travel to wherever it was I needed to be and do whatever it was I had wanted to do.
Of course, I had not pictured living life with lupus when I pictured boarding a flight on a whim and heading somewhere different. Having a chronic condition like lupus tends to dampen the whole living on a whim dream.
Don’t get me wrong; lupus doesn’t mean you have to give up your dreams. You may have to adapt and alter them, but trust me when I say I still have dreams to reach. I still do crazy-ish things.
I just don’t go on plane rides on a whim because I need to pack medications and such, plus knowing where the closest hospital is to treat me if something goes pear-shaped, dampens things a bit.
Now I spend a bit of time researching first and planning based on what I have learned. I make sure I have more than enough medication for the trip and any incidentals.
Having to do these things to ensure a smooth trip takes away the concept of spontaneity, but it doesn’t remove the dream of travel. Instead, I have adapted the dream to focus on traveling and not spontaneous whims.
When I was young, I would hide from the lurking nocturnal monsters by throwing the sheets over my head. I used the theory that if I couldn’t see them, they surely couldn’t see me and would leave me alone. Why I never thought that they would see the lump in the bed and go to investigate I have no clue.
Of course, those monsters weren’t real, so hiding under the sheets was an appropriate measure. One cannot say the same for the monster that I now live with–lupus.
Like the monsters that used to scare me, lupus is as an invisible illness. There are rarely outward signs that I have lupus, and those that may be visible (my swollen joints and rash) belie the severe nature of this condition.
Lupus has tasted my weakness and struck my kidneys and liver. Medications try to keep this monster at bay and allow me a “typical” life. However, all of this is a dance with a creature that picks the music and the style of dance. I stumble along as best I can, knowing that the medications are the equivalent of having the skills to dance and easily shift into the movements with the creature, but also knowing that it means I may be a step behind.
So if you should see someone dancing with a sheet on, rest assured it’s me, dancing with lupus while trying to hide from it.
Wolves are pack animals, and yet I always think of them as being solitary hunters, able to sense opportunity on the wind. Perhaps I am drawn to the idea of a lone wolf due to my thoughts and perceptions.
Lupus derived its name from the wolf, with some people thinking that the malar rash that commonly covers one’s cheeks and bridge of the nose as resembling the look of a wolf’s mask. I can’t say that I see the semblance of that with my rash (it does sort of look more like a post-modern interpretation of a butterfly to me), but the disease itself seems to be wild and sure of itself just like a wolf.
When it is most active, I guess you could say it feels as though a pack of wolves is destroying my body from the inside out, not that I know what a wolf attack feels like, but you get the picture.
I guess I tend to think of the strength, intelligence, and stealth of a wolf when I think of lupus. However, a lone wolf always comes to mind, probably because lupus is my constant companion, and I cannot imagine a whole pack of wolves as a companion all the time. There isn’t enough space for them all, but a large alpha wolf seems to work.
I wear the mark of a butterfly across my face in the form of my rash. Add to this that by my side is always a fierce and invisible wolf, ready to turn when it senses weakness, and you see that I have my animal kingdom to manage.
I’m not one to sugar coat things because less is best when it comes to sugar. In the last few days, functioning in a typical fashion has been a bit of a challenge.
Yes, I know there is a pandemic going on that seems like it isn’t ending soon. I know it’s draining on a lot of people. There may be a hint of the pandemic affecting me, but I know this isn’t what’s really going on.
This is lupus, the beginning of a flare I have been trying to hold back for so long. I might just as well try and hold back the dawn as try to hold back this flare. Lupus is stronger than I am. Stronger than the strongest medications I take. When a flare comes, and it is a given that a flare will come, we hope to shorten the stay and severity of it.
It has been enough to drag myself out of bed each morning, get a shower, eat, and get dressed. After that, I rest with a book or something on my e-reader.
The four-footed one isn’t a fan of these days. She likes going for long walks or running around. She knows, the way that dogs do, that the day isn’t going to go as she had hoped. So she settles down on my feet or lap and rests. She, too, has learned that if we relax and manage this rather than trying to pretend it isn’t happening, it will leave sooner.
Thankfully these days don’t happen too frequently, but when they do, I am reminded that there is no hiding from lupus; there merely is coexisting with it.
A friend sent me a bracelet of hope. It had little purple ribbon charms, hearts, and butterflies dangling daintily off it. My friend had chosen the charms with lupus in mind.
Butterflies are a common symbol for this illness. Hearts represent her love, and the ribbons are signs of hope. Last year she gave me a lovely necklace that had the inscription warrior on it.
I don’t feel much like a warrior, to be honest. I know she sees my daily battle with lupus as a sign of my fighting spirit, but I feel a fraud. It isn’t that I don’t have daily struggles with lupus, some days I think I’m getting ahead of controlling it, and other days it feels the other way around. I feel as if living with lupus is a bit like a tug of war with ground gained and lost regularly. I do not feel like I am a warrior. I’m just a person negotiating life with an unpredictable, chronic illness.
I shared my feelings with her recently, and she told me she had talked with other people who also have lupus. Some of them are proud to be considered warriors, in for the fight of their lives. She said others feel as though they have managed to coexist with lupus. Still, she said, she thought that every day was a day where I chose what I could do despite lupus, and to her, that means I’m a warrior.
Regardless of how we view things, I know she loves and supports me, which wraps me up in hope and love in a way that a bracelet or necklace can’t.
If I could recharge myself as easily as I do my cellphone, life would be easier. Living with lupus means that there are days when I feel like I’m running on empty with no means of filling my energy tanks or charging my battery.
It would be amazing to plug myself in and, after a few hours, be renewed and reenergized. Currently, what happens is neither fun nor straightforward. It involves days of struggle, lots of rest, frustration, tears, and confusion. Eventually, though, I gain some energy back.
I like to tell people that the way I usually operate is akin to a cellphone that never gets fully charged. It isn’t for lack of time in the charger. It also isn’t for lack of trying. It is the nature of the illness, at least for me it is.
Hopefully, they will soon find a way to solve this and other mysteries that come with this condition. Until then, I guess I will keep trying to keep my battery as charged as I can, sort of like an old cellphone with a finicky charger!
They say that if you had a chance to choose anyone else’s problems, you would grab your own again. Mostly because those are the ones you are familiar with. I wonder if it is the same when it comes to chronic conditions.
I mean, would you toss out your chronic condition for the joys of living with lupus? I have a friend with diabetes who used to say he would gladly swap it for any other illness. He complains about the finger pricks for blood tests, managing his diet and lifestyle to ensure he has the best outcomes possible.
Recently, I asked him if he’d be willing to swap diabetes for lupus. He said he’d do some research and get back to me in a few hours. Now I know that technically this is impossible to do, the swapping of illnesses, but I wanted to see what he’d do in the end.
A few hours later, he told me that his illness was more predictable and less likely to get too intense. In other words, no, he wasn’t going to swap after all. If anyone’s interested, I’m willing to trade!
No one said living with lupus would be easy; in fact, no one really told me much about living with lupus after my diagnosis. Sure, there was a list of things provided, such as avoiding sunlight and getting plenty of rest. I wouldn’t call that preparation, though.
It was just another annoyance in a long line of annoyances leading up to my diagnosis. You see, lupus has no definitive and straightforward test that comes back positive or negative. Instead, there are blood tests for inflammation, blood counts, sedimentation rates, as well as, liver and kidney tests. But not one of these tests will come back and scream “positive for lupus.”
In addition to these tests, doctors will assess symptoms such as fatigue that doesn’t go away with rest; low-grade fevers with no other illnesses; rashes, especially butterfly ones across the cheeks and bridge of the nose; joint pain with swelling and stiffness; photosensitivity and fingers/toes that turn blue or white with cold and stress.
I guess, given how lupus likes to mimic other illnesses as well as how challenging it is to diagnose, it stands to reason that living with it is is also a challenge.