Things I’ve Learned From Lupus

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.

I’m So Angry….

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.

Too Good To Be True, Or Is It

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.

Working With Lupus

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.

Team Work

The dishes are being air dried because I have a knee issue.  I have a knee issue because I have lupus.  I was told to stay off my leg as much as possible. I had been on my leg enough already earlier in the day. Beloved isn’t drying the dishes either.  He is exhausted as well.  You see with me limited on what I can do with my knee and being on crutches, he has had to do more of the work.   

I guess you could say my reason for not doing the drying is because I have lupus.  His reason is because he lives with someone who has lupus.  He will tell you that living with someone such as myself is probably as exhausting as lupus can be.  He may be right since I’m too stubborn for my own good and let things go before I get help.  This typically results in a longer healing period with him picking up the slack.

Not everyone with lupus is like me.  Some people are very rational and pay better attention to their cues.  Regardless, there are down times for most lupus patients.  When we are down, it is up to others in our lives to pick up the slack and no doubt worry about us too.  Just considering it all can be exhausting and overwhelming.  

I may struggle wth how my illness effects me day by day, but Beloved has his own struggles with living with someone with lupus. Who knew it had a secondary impact like this?  Probably anyone who is part of these teams.

Decisions, Decisions

Dreams, I’ve been told, are a way of bringing things to the surface while you sleep.  Sometimes you need to work thrugh something and it’s been done via your subconscious.  For the past two nights, I’ve had the same dream.  This is exceedingly rare for me for two reasons.  The first reason is that I don’t remember my dreams most of the time.  (Probably due to poor REM).  The second reason is that my dreams, when I have them and can recall them, tend to be fairly mundane.  

The dream which has been brought to me the past two nights is not mundane.  In fact it is what I might call whimsical.  You see in my dream a cockroach is leading a marching band.  The marching band has no instruments and  is made up of squirrels and rabbits.  (Yes, all the critters in my dream are the same size.)  The cockroach who is leading this marching band wears a Dolly Parton style wig and is waving Beloved’s old business card.

So far I’ve when up each time at the same part of the dream, as the cockroach leads group down a marble hallway and into an art museum. What any of this means is your guess.  I have no clue what I’m supposed to make of this dream and rest assured no adult beverage or mind altering substance has been taken.  

If this is the new norm with my illness, things are certainly going to be more entertaining and weird.  The question I have is, should I mention this to my medical team, or assume it’s just something else.  Beloved suggests that a wise person should mention this, just in case it is a new symptom. But what if it’s just me catching up on missing REM?  If that’s the case, why share it with my medical team and take them into the weirdness that I’m experiencing.  Decisions, decisions.

Possession Indeed

Today I learned I am possessed. Not in the religious sense of possession, unless the demon that has taken over my body is one that thinks I can make all sorts of food items all in one day.

I woke up feeling great. You know those days where you pop out of bed, or however you get up, and you know it’s going to be great? It was one of those days. I live for those days.

I planned on making some comfort food, plus some cookies for Beloved, and of course a little something for four-feet too. See what I mean about possession? Sure, if you don’t have a chronic illness with fatigue, this might not be a crazy set of moves.

Naturally, before I could make any of these items, I had to go to the market to get ingredients. Still, it was a great day. So I got the ingredients and started to make cookies for four-foot. After that came cookies for Beloved.

Who doesn’t love to come home to comfort food after a long day away? I know after a long day there is something special about being served food prepared by your loved one. Food you enjoy and love, made out of love, just for you.

That was all fine, except I have a chronic illness. The kind that fools me and leaves me drained when I least expect it. So by the time Beloved got home, everything was ready. And by ready I mean the food was cooked, cookies were cooled and I was comfortably waiting for him, on the floor.