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.
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.
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.
I struggle with a rather simple question. I’m just never sure how to answer it. I know that probably seems silly to you. Especially when I tell you what the question is. It is one we hear all the time and one you probably answer causally without a second thought. So what’s the question, you ask. It is: how are, or the variant, how are you doing.
Yep this question, or a variant of it, is my struggle. Yes I know I am a highly educated indivudal. Yes I know I have had this question asked to me repeatedly throughout my life. It doesn’t make it easy to answer on a regular basis however.
Sure I can say “I’m doing fine” or some variant of that. And sometimes that may be the right answer. But having a chronic illness means that I am not always doing well. Sometimes I am the opposite of fine, however to be honest with my answer means over sharing with some people. Perhaps I am foolish, but there are people who don’t need to know this struggle, not from where I sit.
Sometimes I am not worried about giving that information to someone regarding my struggle. Instead I debate if it is fair of me to share that burden or guilt with close fiends and loved ones. They all have their own lives and issues after all.
Soemtimes I wonder if I am doing okay or if something is wrong. So I’d rather not face that question. And yes, sometimes, I want to hide from my illness. This is easy to do when I ignore the question.
The truth is, a lot of times I don’t want to consider how I am doing. I don’t want to think about luous, or how hard things are, or what my pain levels are. The problem with all this is that even if the question isn’t asked, it is in people’s eyes.
So please, don’t ask me how I am or how I am doing. Let’s explore soemthing else!
I knew this day would arrive; it just wasn’t marked on my calendar. I had envisioned this day for awhile. I had thought of all the ways I would say things, what I would do, and how I would feel. Naturally, it did not turn out how I envisioned it.
Quitting can be liberating experts say. In my experience, this can be a truth. The experts fail to address the knocking knees and pounding of your heart when you are quitting the known for the unknown. Everyone muddles through it.
With knees shaking a bit, heart-pounding, and a dry mouth, I did my quitting. Not of a job this time. Instead, I quit my career. It has been scary since I said those words the first time. Very scary.
I’m not sure that I will be successful with my next endeavor. I won’t know until I try and give both it and myself some time. Perhaps quitting will be a huge mistake, I did not have to do it. I did it because I wanted to be in a place to set my schedule (if you have a chronic illness, this can be very important to you). I want the freedom to work when I can, where I happen to be without having to compromise too much. Time will tell if this works out that way. During this time, I remind myself I am more than a career or illness.
If someone had told me having lupus would result in getting a chauffeur, I would have embraced it more openly. Okay I probably wouldn’t because I’m stubborn.
How stubborn you ask? Well I qualify of a special parking placard, the ones that allow you to park in the disabled parking stalls. Apparently these are prime real estate, near the doors and wider space between the lines. As one of my doctors once put it, there are some perks to an illness like lupus. The perk of premium parking should not be scoffed at he said.
And there are days where I wonder about how far I will be able to walk due to pain or failing energy or what have you. But I still park far away from the doors. I always have. Because the exercise is supposedly good for me. Because people won’t park near my car given how far out I’ve parked, and yet they still do.
How stubborn you ask? I qualify for special appointments with my doctors, like get in no questions asked special. But I never take them. Because someone else may need them more than I do.
Now a chauffeur is a different story, except I like to drive. However on the days it is too much, having “James” take me “home” can be delightful. Of course I say this tongue in cheek. I am totally grateful that Beloved easily steps into help out without complaining. Of course I’m also grateful that he doesn’t mind when I say “home James” as posh as I can!
There is this strange place that I inhabit. A place of the chronically ill. But it’s also a place of the working world. Most of the people I know tend to be in only one of these places. Not always, but typically. And I’m sure I’m not the only one who does this weird dance between the two places.
On one hand I struggle with my health and all the fun things that come with my medications as well as lupus itself. I struggle with energy issues. I struggle with pain. I struggle with mobility issues and such. I also struggle with stiffness and swelling. Let’s not get into the mouth sores and such.
On the other hand I struggle with the standard work issues, like getting up to go to work. Getting myself
ready for work. I struggle with all the typical work dynamics.
Try marrying these two hands together and it becomes all types of fun. Especially as I do not loudly advertise my lupus or how I feel each day. Most times I am doing all I can to appear “normal” while I’m at work. I just want to be doing my work and sometimes I can do that. Of course sometimes lupus wants to be noticed. Sometimes lupus doesn’t want me to work. It wants me to do anything but work.
The issue becomes I don’t want to be seen as less than my peers. I hate not being able to work because of my illness. And at the same time I don’t want to push too hard that I end up not being able to work at all. And the thing is I doubt I’m doing justice to lupus and how serious it is for me. I am hiding it so to speak and down playing it. At the same time I’m not always able to do justice to my work or my peers in my field because lupus gets the best of things at times.
Let’s face it, this dance is not the hokey pokey, no amount of turning myself all about will fix things. No friends, this dance is more like a herby jerky robot dance. And it isn’t pretty, but it seems to be my thing.