I have a confession or make. It’s the kind of confession some people will totally understand, other people, well, they may not get it. You see I ever been blissfully ignoring some warning signs, although in all fairness it’s hindsight that makes me see if as a warning sign, that perhaps all is not exactly stable with my health.
Okay so when you have a chronic illness like lupus, stable is a relative thing. I mean a healthy person wouldn’t call my minor ups and downs stable, but for me it sort of is. And when you have only minor ups and downs for a period of time you start to feel like you have a handle on things.
So when you feel that way, blissfully feeling like you finally got this, you ignore those nagging odd pains, unusual aches, strange sensations and dizziness. At least you do if you are me. And if you are me, you kind of continue to brush these things under the covers. You play pretend in a whole new way.
You stop pretending that you are fine among just healthy people and also lie to yourself and others. So that nagging strange pain grows, and still you tell yourself that it’s nothing. Until it isn’t nothing or you can’t ignore it any longer.
And then you reach out to your medical team who insist you come and see them stat. No you cannot drive yourself there under any circumstance. So you get someone to take you there, you submit to tests and realize that your minor down is actually serious enough that they want you to have a sleep over at the hospital.
Maybe, if you are like me, you talk them out of that but promise to come back. Yo go home and hit Google and suddenly realize that some of what you brushed off are signs that your disease is attacking another organ. And so you see dear friends, I’m an idiot for not seeking medical intervention sooner.
Now and then I will have one of those days, the ones where it’s hard to get out of bed or dress myself. No I am not depressed, I have lupus. Yes I know depression is common with chronic illnesses such as lupus. But depression isn’t swollen joints that prevent one from getting out of bed easily or managing zippers and buttons.
Today was one of those days. I knew it when I tried to get out of bed and my knees felt like squishy swollen grapefruits filled with sharp objects. I knew it when I tried to grab onto something and my fingers protested loudly. Knuckles hot and burning while being stiff and uncooperative.
It was a day for no buttons or zippers. And they do now make some stylish clothing that does not require zippers and buttons. Only I don’t own any of that. And the clothes I needed to wear required zippers to be zipped, buttons to be buttoned and shoes to be tied.
No, I don’t particularly like to torture myself, at least not that way. Sometimes you are asked to visit a place that has a dress code or a special uniform and footwear to put on. Sadly these places do not have uniforms to accommodate fingers that don’t want to tie or button or pull a zipper.
So today I decided not to out myself the awkwardness of trying to make my fingers do what seemed like impossible tasks. Today, I out myself first and advised my client I would not be going on the required tour or seeing all the sites. My client was naturally upset that I was cancelling and it’s rare that I do this. But I today I did. And today I asked why certain pieces of safety gear aren’t designed to accommodate all people. Turns out my client never once considered it. Not that this means it can or will be acquired. It does mean that as long as the client insists I do this tour, the client will have to wait until my body cooperates. Or the client gets someone else to do the work.
Some people like to explore ideas, concepts or the world through touching, watching and doing. Some people like to explore the world through the written word and others still by listening to others. Most people tend to lean towards a combination of ways to explore and understand things.
And then, well then there is the four-footed one’s approach to exploring the world. She is a watcher and a doer, but mostly she explores through the sense of touch. And by touch I mean using her tongue. I’m pretty certain the world, to her, is divided into two camps: food and not food.
The way to know if something is food or not is to touch it. With at least your tongue. But it’s even better if you can get the whole thing in your mouth, give it a feel and a small chew. All in the name of exploration of course. And so leaves, paper, thread and dirt have all been explored this way. As has grass, bark and rocks.
Now she’s moved onto other items: dozing wasps and bees, beetles and slugs. And now spiders. So far only spiders are clearly in the food category. A delicacy even based on her desire to continue to eat them and actively search them out. I might even go far enough as to say they are the most desirous thing in her diet right now and it’s not for lack of me providing her food.
Now if I could only teach her that the whole world doesn’t need to be explored so vigorously.
Who knew that changing the duvet on the bed would create such drama in a short period of time? It certainly never crossed my mind when I made the change.
Even worse is that the drama was created by a four-footed companion who sleeps ON the bed with me. Texture and thickness are apparently very important to her. So important that she was willing to create a massive scene when she noticed a new duvet on the bed. She demanded to be placed on the bed. (Okay I know she’s spoiled.)
Once she was on the bed she proceeded to try and remove the duvet. Not her normal behavior. Typically if she likes something, she will curl up in a small ball and nap.
So like an idiot, I changed the duvet to see if it would make a difference. The new cover is fine as she immediately settled down. The only problem now is that she has decided to smear her face all over the cover. Because she needs to mark it as hers. I suppose she just lets me borrow things. At least in her mind that’s how this works.
Is the four-footed one spoiled? Yes, yes she is. Is she spoiled because of me? Potentially. But part of it may be her personality too. Which yeah I guess is more in keeping with me. So I guess I will just keep this all under the covers because we don’t need to discuss how spoiled she is or how this happened.
Are you a list person? Do you write lists to start your day? Do you return to your lists throughout the day to cross of the items you have accomplished? Perhaps you are a list person, but keep the list in your head, checking out items off your list as you go.
I am not a list person. I have tried to use them. I write lists for things I need to buy or things I need to do. Inevitably when I need the list, I don’t have it with me or I go from memory. Thankfully my memory is pretty decent so I end up doing what needs done, buying what needs bought without the assistance of the lists. This drives Beloved crazy. Partially because he is a list person.
Beloved lives for lists. From what he needs to do for the day, the week, the month, to which books he’s going to read and in what order. He never shops without a list. He doesn’t believe in going into a store and simply buying what catches his eye or his fancy. Need a new phone? He will do up a list for the phones you are thinking of buying with the pros and the cons all sorted out. That way you have it right in front of you and can make the purchase with all the facts.
Recently Beloved wrote a list of things we needed to get done before the Christmas break. Some of the items were minor, but some were rather large. Some of the items were things I didn’t even know he had on a list. Anyway he wrote this list and stuck it where he would be able to see it, in this case the refrigerator. And all was good as far as getting some items completed on the list.
He crossed off items as we finished them and he was rather pleased with himself for the progress that was made. And then he decided to clean the kitchen. And in cleaning the kitchen, he lost the list. Yes the list was lost. The world came to a stand still for him and in his panic he asked me if I had grabbed the list. (I hadn’t.) When his panic settled down, I asked him if he had managed to take a picture of the list on either his phone or his tablet. Thankfully he did. And the world was right again because the list is back to save the day.
Someone asked me if I was going to dress the four-footed up for Halloween. The person who asked this question does not know the four-footed one very well. So the answer to the question is no. Because I’d like to keep my body intact, away from teeth and claws. I’d like to keep my hearing intact too.
How do I know what will happen you ask. A reasonable question. You see the four-footed one has a few coats for when it gets colder, or far too wet. And experience has taught me exactly what she will do. Because my four-footed companion likes to be au natural.
If she could get away with no collar, she’d be in her version of seventh heaven. Yes her collar. She doesn’t even want to wear it. When I take it off to give her a brush or a bath, it is a fight to get it back on her. She’d happily go streaking (both in speed and no coverage) all the time if she could.
Alas she is almost always clothed in her collar. The tiny strip of material that it is . Blinged out with her required tags. That’s it. Yet you’d think I was making her wear a thousand layers of clothing or blankets.
So no, no costume for her. No dunking for apples, because it’s not her thing, but begging for treats? Oh yes, she will do that. Just stop by the house and you will see.
Life itself is a bit of a juggling act isn’t it? Or perhaps it’s more of a question of balancing on the high wire for you. And I certainly can feel like a roller coaster ride at the amusement park with its ups and downs.
Life with lupus is exactly like all those things plus a trip in the fun house (without the fun) and a ride on the Drop Of Doom with somewhat less than grippy harnesses.
Land just like a day at the fair, it’s not all bad. I know a lot of times lupus makes things seem bad,but not really. You have your good days which to me are like trying some new food at the fair or going on a nice ride. You have days where you will throw the ball at the target and be successful and other days where you just don’t get the prize.
It’s all okay though, as hard as it seems. As frightening as those rides can be at their scariest, it’s okay. What makes it okay you ask? Having support makes it okay. Having people who know when you need help even if you won’t ask, that makes it okay too. Knowing you aren’t alone? You better believe that makes it okay.
So even though you may be scared or unsure, go out and see what the fair, um, life I mean brings. Even if you have lupus.