A tight, stiff neck greeted me this morning as I got out of bed. I tried massaging it a little, but nothing made a difference. My neck was still stiff and tight.
Beloved suggested he would massage it a bit to see if it made any difference. He applied heat before he rubbed it, and still, it hurt the same as before. He decided to massage my back, and oddly as he massaged down by my shoulder blades, my neck started to feel better. It may have been a case of my body just relaxing, or it may have been one of those connections that seem to happen all the time. You know, the kind you feel pain in one area of your body, but the other area is where the pain originates.
I didn’t think much of it; I was just grateful for my neck to feel better, which is also not unusual. I end up ignoring those connections, those pieces I should be paying attention to, simply because I feel better.
While talking with a specialist later on today, I casually mentioned the pain in my neck and how it finally left. He said that what I was talking about was referred pain, and it isn’t uncommon. It turns out that this type of pain is why people turn all sorts of healing in desperation. They are treating the area that hurts, but it isn’t the source, so of course, the pain stays. It continues to ache and bother you, and so you try more things. However, you are always treating the wrong area, so nothing you try works.
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.
Have you ever done something because it feels good even though you know you shouldn’t do it? Maybe you completely blew your healthy eating plan off for the day and enjoyed all the foods you ignore. If you did that, you probably decided that moderation could be tossed to the wind for the day as well.
It’s okay; you are human, after all. We all have these moments. Most likely, after you’ve had that moment of pure joy, you go back to taking care of yourself and doing what you should do. That is until the next time you decide to do something different. No harm, no foul, right?
When you have a chronic illness like lupus, doing something that you aren’t supposed to, something that isn’t in keeping with maintaining your health can come back and bite you in the form of being sicker or messing up your blood work. I’ve stood in the sun even though it doesn’t agree with lupus. And yes, I have paid dearly for it later on in the form of a flare. Sure, I’ve eaten stuff I shouldn’t have eaten, and lupus has thrown a tantrum. Hey, I’m human; sometimes, I do things despite lupus.
The problem with being angry is that it eats at you, little by little. The longer you are mad at a situation or person, the more of you erode away.
The problem with being diagnosed with a chronic condition is that you may feel angry. Angry about having the illness, mad about how your life is going to change, furious because it’s happened to you, and you are a nice person darn it.
It’s natural to feel angry, hurt, and upset when you get this kind of diagnosis. I spent time and energy in anger, which was directed squarely at lupus. In case you are wondering, all it did was wear me done.
You see, lupus doesn’t care if you are angry with it. Lupus shrugs its shoulders and carries on being lupus. There are times when my anger seemed to fuel a lupus flare into a raging inferno. A vast flare that took a long time to get under control.
The key to living with a chronic condition is to move past the angry phase, to understand how the illness responds to various emotions and pressures. Once you can do this, you can find a way to manage the disease while you handle life.
No one is perfect, some people are better at seeming that way than others, but no one is perfect. We all have flaws. Something life has taught me is that most of us struggling with admitting we need help. Living with lupus has taught me that I need help sometimes. The kind of help that can open things when my hands are too stiff to turn lids, lift tops, or whatever else is required.
Sometimes I need the kind of help that knows I’m going to crash hard into an active flare long before I know it. This kind of help steps in and does what it can to lessen the flare effects.
You’d think that with the amount of help I need, that I would be able to figure out how to ask for it and be gracious in accepting it. Either I am a slow learner or very stubborn because I have yet to be generous in accepting the help when I need it. Please don’t misunderstand; I am genuinely grateful for the help. I am slowly, ever so slowly, admitting when I am in dire need of help.
I know I’m not alone with this, and I know other friends who also have chronic conditions who struggle with the very things I do. Please don’t mistake our struggles with our lack of gratitude; it’s just that it gets tiresome needing help because your body is fighting you.
Being sick sucks. When you have a terrible cold or flu, it sucks, but you know in a few weeks you will be on the mend. Sure, you are miserable for a few days, you may feel like death warmed over, but you know it won’t last and you will recover.
Now imagine feeling like that every day, on a good day with no chance of recovering. Remember, that’s on a good day. On a bad day, it hurts to breathe and move, and you don’t know how long it will be until you have a good day again. This, my dear readers is life with chronic illness.
It sucks, but you keep going on with life, doing what you need to do as best you can and hanging to those good days. You keep on keeping on, taking medications that may have horrible side-effects. Some of those medications are scary to hear about, but what else do you do? You know, if you don’t take it these medications, you will get worse; in fact, your illness may end up leading to your death.
The thing is, most people with chronic conditions are tougher than you’d think because they have no choice but to be tough and keep on keeping on.
Imagine living in a world where taking one pill, getting one injection, drinking on a particular mix, or doing one weird exercise would cure any illness you get. Sounds fantastic, right?
Since I live with lupus, these types of claims frequently cross my path. I’ve had people in doctor’s offices tell me they have cured what ails them by drinking beet juice, agave syrup, salt water, and molasses, just to name a few. I’ve had well-meaning loved ones send me articles, advertisements, and videos of people who have cured their lupus for good.
When you have a chronic condition, like lupus, multiple sclerosis, or Parkinson’s, there is nothing more irresistible than being able to cure your future life. When that cure can happen with something simple, or at least relatively easy, of course, there’s a temptation to try it. What have you got to lose?
I will tell you what you have to lose, dignity, hope, respect, and in a lot of cases, money. Now not everyone is out to make a buck on your misfortunate, but a lot of people are.
It’s important not to lose hope or faith, but it’s also essential to be skeptical of so-called cures. When cures are found, remember it will be public knowledge withe sound science to back it up.
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.
Once upon a time, there was a girl who wanted to be happy, successful (on her terms), while setting her own rules and hours. She dreamed of working from home, or on a veranda, deck, pier, or even the beach. She longed to be her own boss while making a difference in the world.
She had plans, lists, and actions all to bring her closer to her dream. She also happened to have lupus, which added a whole new dimension of challenges to reaching her dream. However, lupus also made it imperative that she find a way to work for herself due to the unpredictable nature of the condition.
In the past, she had worked for understanding bosses as well as bosses who didn’t care about anything other than her productivity. She was tired of feeling guilty when she needed to slow her pace, impacting her coworkers. She was tired of hearing rude comments about her being “lazy” or getting special treatment.
Most of all, she wanted people to understand that there was more than one way to get things done, depending upon the person and their situation.
The academic world isn’t always an ideal place for someone with a chronic and unpredictable illness. So she left it all behind and started to look for a place to settle down, get comfortable, and find her life’s work while working on her relationship with lupus.
With a deep breath, crossed fingers, and hope, I started to explain to Beloved about this “wee thing” called lupus, that I live with. I half expected him to up and leave, tell me it was too much to deal with or let me know he wasn’t about to sign up to a life with someone who has a chronic condition.
I still recall the fear and trepidation, I felt all those years ago, and when I shared this with him. I remember it was raining outside, and I was watching the rain slide down the windowpane. I figured if he left, I could say that I wasn’t crying in the rain; instead, it was raindrops running down my face.
I did walk home in the rain, with a subdued Beloved, who was trying to make sense of everything. When Beloved left me at my door, he told me he needed time. He asked for time to think, to research, and to figure things out. He hadn’t expected my “news” to be something so heavy, but he wasn’t running, or walking away. He just needed some time.
When people ask me now how did I know it was time to tell him about my health, I struggle to find an answer. There isn’t a set formula, and there is a possibility that it will be too much for the person to hear or deal with. Some people are upfront about their conditions at the beginning of their relationships, so it’s easier to walk away if need be. Others wait to see if things will go to a place where you need to share that information.
The best that I can say is to follow what your heart says and know you can’t make someone react a certain way. Some people need time. Some people can’t fathom living with the challenges of bad days. Some people say it’s nothing that love cannot handle; if someone says that to you, that’s a gift to treasure and is worth everything.