Oh The Perks, or If Someone Had Told Me

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!



The way some people talk, stability is the be all and end all to having a happy, successful life. Perhaps it is how they define stability. Or maybe it is how they define happiness or success. I’m not sure.

Don’t get me wrong, stability is important. Humans, after all, seem to like being on ground that doesn’t rise and fall unexpectedly. We like to plan and the best made plans seem to happen when things stay sort of the same.

But how do you really appreciate the good times, if everything always stays the same? We need to have some ups and downs, a bit of swing now and then. It helps us realize that we like things to be, well, stable.

When you have a chronic illness though, stability means something different. You hope and pray for stability rather than constant changing of your illness. Unless the changes are for the good. But if the illness isn’t able to be kept in check, stability seems like a slice of heaven. If you can get it.

Doctors and specialists put a lot of stock in stability. “You need to be stable” they say. “You need to do all you can to get your condition stable”, as if I am personally responsible for the swaying of my condition.

Sometimes no matter what you do, stability eludes you. I know that feeling. I’ve done everything prescribed and suggested, in the name of stability. The thing is, I didn’t find it. I’ve reduced stress, I’ve challenged myself. I have tried meditation and yoga. I have cut out all my favorite foods. I have done everything short of standing on the head of a pin in the name of finding stability.

Here’s the thing, I have never found it. And you know what? It isn’t really the end of the world. Now it might be the end of the world if we were talking about a heart condition or such. And I understand that. But for me, for now, stability is, well, not something that’s stable in my life.

A Different Point

They say there are pressure points in the body that if pushed upon, can render a person incapacitated. They say anyone, even a small or slight person, can render the largest of people into a state of being unable to do, well, anything.

I knew about these points from a self-defense class I took years ago. I forgot about them until recently when my own body decided to betray me. It rendered me into a state of uselessness without the use of the pressure points. What’s the point of having these pressure points when your body can carry out the same feat without needing them?

What I need more than these pressure points, is points that will give me more energy. Or end the pain and swelling in my body. Or maybe a little something that will remove the some of the stiffness out of my joints, especially my fingers and thumbs so I can type like a normal person.

May I just say that what good are these pressure points when the person is taller than you are? I mean if you have to reach a considerable height upwards, you cannot effectively apply the right pressure or get the spot exactly correct. (Not that I have tried, for the record.)

I’m just saying that those of us who have chronic illnesses need other points to be pushed upon. The ones to heal and make you feel better.

Waving With Care

I admire those people who can wave their hands in the air like they just don’t care. I really do. It isn’t that I can’t wave my hands in the air, I can. On a good day. But I always care.

You see nine times out of ten, when I raise my hands, or move them, there is a pain involved. If I raise my arms up in the air I am guaranteed to make all sorts of noises that should not come from the human body. From snapping and grinding to popping and clicking. And that’s just the warm up noises! Huge cracking like noises can be heard if I then attempt to do any movements.

And I care about this stuff. Because honestly there is no real reason for my body to sound like a broken down piece of machinery. Other than the damage lupus has done to it. But I’m like an old machine in dire need of oil after being overused. And yet I’m not chronologically old enough for these noises. So yes I care.

Beloved once told me he knew exactly where I was in the house simply by following the noises. You see at that time one of my hips clicked while the other one popped whenever I walked anywhere. At that time I think my one shoulder made a loud snapping noise too when I moved. Making it impossible to sneak around.

Once upon a time, a long time ago, I waved my hands in the air like I didn’t care because I really did not have a care in the world. No joint pain, no swelling in my joints or odd noises. Just the fluid, easy movements of youth.

Noodling It

Have you ever just felt like a wet noodle? You know, all limp and without any support or structure to be, well, upright? No? Well I wish I could say the same.

Some days with lupus, or maybe it is more with medications I take to deal with lupus, I feel a bit like how I imagine a wet noodle would feel. All limp and useless for most anything. I suppose I could be used to transport sauce, provided someone did the actually adding of the sauce and the moving of me.

Yes, some days I feel just like a being with no internal support or structure. I am blessed, of course, to have external support and structure in terms of friends and loved ones. The thing is, sometimes this just makes me realize how much of a limp, wet noodle I am. No one means to remind me of this aspect of life with lupus, I know that for certain. Still, it happens and it reminds me how different I am from others.

I try to find the bright side of being a wet, limp noodle, but the reality is, sometimes the bright side is that I can keep the chair or the sofa from floating away. Because that’s basically the extent of what I have energy, being a sofa or chair weight. Like a paperweight, but for furniture.

There was a time when I used to think a lot about this part of living with lupus, but sometimes you can noodle over things a bit too much and it all becomes a big, gummy mess. Get it? Wet noodles, congealing together? Okay I will stop and just focus on maintaining the position of the furniture.

Rest Of The Innocent

The four-footed one has excelled in her class of napping regardless of her location. She can nap on the floor as easily as she can fall asleep in someone’s lap. She naps in the car as well as a chair. I mean she can nap easily any where, any time.

I cannot nap like this this. I have issues with napping to begin with. And by saying issues with napping, what I really mean is guilt. I have guilt about napping when I should be doing something. Of course there is always something that I should be doing during the day. So naturally I am unable to nap due to the whole guilt thing.

I also have issues with napping in certain locations. Basically anything public is simply not an option in my eyes. Maybe it has to do with how vulnerable I feel when I nap, or perhaps it’s the whole who would see me and blah blah. At any rate I do not nap in public. Not on planes or trains. It just doesn’t happen.

Hospitals are deemed public places in my world. Of course I try to avoid them like the plague when I can. But when I must be in one, I will not nap during the day.

Yes I have lupus. Yes lupus leads to massive exhaustion. Unfortunately the sense of guilt and fear somehow seem to make napping near impossible. And let’s not forget shame.

That’s right. I feel shameful for needing to nap. I feel weak and ashamed that I cannot manage life the same as everyone else. I know, I have a chronic illness that feeds off my lack of proper rest. But some how my mixed up view of things says it’s wrong for me to be napping.

Oh I’d give anything to nap the peaceful slumber of an innocent, such as the four-footed one. She doesn’t care about guilt, or shame, or fear for that matter.

I’m Sick, But I Am Not My Disease

When you have a chronic illness, or a serious illness, it is easy to become that illness. This isn’t intentional on your part, it just seems to happen. Probably because you have so many medical appointments tied into your health. Maybe because it is all you can think about. Perhaps it is this way because your health, the status of the illness and such ends up dominating your conversation until it seems your illness has consumed who you are.

Some people will push back against their illness becoming who they are. Some people will fight hard, do things they always did before their illness, just to prove they are more than the illness. I understand that. I have been there myself.

However there are some people who cannot fight against this. They cannot do anything beyond resting, trying to care for themselves and attending to their appointments. Does this make them weaker? Does this make them their illness?

When you are healthy and well, it can be hard to understand how sick a person can be. And how long it can take a person to find any form of energy to be spent on anything beyond his or her illness. Please don’t judge. You cannot possible understand how incredibly hard it may be to be yourself and not your illness until you have had to face something like this yourself.

If you happen to be blessed to have never been in this situation I ask you to please be kind to us. We don’t mean to become our illness, we don’t want to wear it like our identity. It just happens that way sometimes. But truly underneath the trappings of that illness, we are still who we’ve always been!