Beloved had decided to take the four-footed one for a walk with a picnic at the end before returning home. I had planned on staying home and doing a whole pile of nothing. Well not because I was lazy, although there is nothing wrong with a full day of nothing either, but because lupus was happily active and stealing my energy and health.
The four-footed one went happily enough with Beloved for the walk, but she was dead set against the picnic. Beloved wasn’t sure if it was because the four-footed one has a love-hate relationship with ants or if it was bcause he failed to back a nice blanket for them. At any rate she wasn’t having a thing to do with the picnic. She was so against it that she was not even interested in food. So they ended up just coming back.
The four-footed one decided that she did want a picnic, just not outside. Instead she vocally advocated to have the picnic in the house. On our bed which I happened to be resting on. The fact I wasn’t interested in crumbs on my bed was irrelevant to her. She was hungry and had been promised a picnic. So she pulled out her puppy dog eyes to use on Beloved and I and she leaned against me as if to say “please let me have my picnic”.
Beloved gave in and picnic on the bed commenced. And after picnic? She was already on the bed so stretching out for a nap, was as easy as just stretching out. No need to find a comfortable spot because she already found it.
The four-footed one loves to have her picture taken. Just tell her you want to take her picture and she will look up, all sweet and innocent, even if the moment before she was being a little devil. I’m not really sure if she understands having her picture taken, but she seems to. And she doesn’t seem to mind either.
I’ve never been a large fan of having my picture taken. After I started tea tempt for luous it got even worse. I mean it’s hard to want your picture taken when you feel awful. It’s hard to be cheerful or smile when all you can think about is the brilliant red rash across your cheeks. And please don’t ask me to smile of be anywhere near having my picture taken when I have had prednisone.
Prednisone makes me look and feel unpretty, and hungry. And it’s impossible to feel beautiful, or even okay looking when you have gained a lot of weight and have a huge, round face. It’s just so hard sometimes.
But sometimes you can’t choose the treatment that works with lupus.. Sometimes you have to settle for being so hungry you could and would eat everything in sight. Sometimes you have to settle for a round face, weight gain and feeling unpretty just to save your organs.
But you can choose to realize that what is staring at you when you look in e mirror is still a beautiful person. The vision in the mirror is just distorted. And it’s okay because you have bigger things to focus on, such as your health and how incredible you are. So let the distorted visit be in the mirror because it will disappear soon enough. But your amazingness will stay and sometimes pictures don’t show it well enough.
I wanted so much to visit with friends. We had planned is for ages. The weather was good. Lupus seemed to be minding the rules for good behavior. We were enjoying each other’s company and sharing stories, laughing and having a good time. And suddenly without warning I felt dreadful.
It wasn’t too hot. It wasn’t that I was in the sun. It was that lupus felt ready to join the party. Invitation? Luous didn’t care about the minor things like invitations and such. Nope. Lupus is brash and confident. So lupus just showed up. And got into the joining of the fun.
A dear friend noticed, before I was even fully aware, that my face had taken on a more reddish hue. She started to hover near by and say we’d get together again, sometime soon, while another friend gathered up items to give to Beloved so he could get me out of there.
And I sat there, feeling so dreadful it was insane. I sat there realizing I had no energy and we had a long walk back to the car. Back through a crowded restaurant and two blocks to the car park. It might just have well been a million miles for how I was feeling. Beloved casually got the waiter’s attention for our bill. He held bags in one hand, another was basically supporting me and then an amazing thing happened. All,of our friends sum,owned for their bills and walked us out and to,our car.
Bags were taken from Beloved so he could help me walk the million miles in what seemed like a ground now covered with sharp and broken glass. It wasn’t. It just felt the way in my joints. Friends made sure we didn’t struggle too much , helping me into the car. Others placed bags in the car and all wished us well.
Sure lupus cut our visit short, but what a visit it was! And when you have friends who get it, somehow it never seems as awful to just have to leave suddenly. This doesn’t always happen when lupus decides to make an unannounced visit, but when it does happen I am reminded just how blessed I am with people who help me manage lupus without a second thought.
Soemtimes,Es things that are beautiful on the outside are anything but beautiful on the inside. For example, seeing a talented ballerina dance on pointe is a thing of pure beauty. However if you were to look inside those shoes, you’d see feet that a lot of people would call anything other than beautiful. This feet shoe the toll of dancing on pointe, of the stress and hard effort. You may even see signs of the pain that comes with this.
I know bcause I used to dance. Before lupus, not just before the diagnosis, but before the sky,proms of the disease were active. And I worked hard to dance, to earn my pointe shoes. And the hard work showed in ruined toenails, red toes, bruises and such. From a distance I looked happy and beautiful and as if I was enjoying myself. And I did. But it came at a pice. And that price was my less than beautiful feet.
I recall getting my feet massaged once, while I was dancing, and it was incredible and my feet felt so different. But it was a very rare thing to do. Because I did not have pretty feet.
These days I don’t dance. I’m not able to dance and I’m okay with that. But I’ve never lost that idea that things that ar pretty on the outside ar not always the same. And in some ways, I may look passable on the outside, or even pretty. However on the inside I feel anything but that. I feel up pretty and ugly. Full of ruined joints and damaged organs and pain. And with lupus, no amount of massage will make that part of me feel amazing the way that foot massage once felt to my dancer’s feet.
And it’s easy to relate to this even if you don’t have lupus, because life and people can make you feel I pretty. Even though that’s not true. So if no one has said this to you recently, allow me to tell you that you are pretty.
Some days you just need to find a place and collapse for a bit. You may have been very busy prior to this moment. Maybe you’ve had a lot of deep thoughts or wrestlingg matches with decisions. And maybe, just maybe, you have no “real” reason for needing collapse. You just do.
And today was one of those days. For the four-footed one. She managed a wee walking and then decided she just needed to collapse. She wasn’t sick, she hadn’t been running or using up a lot of energy. She just wantd to come home, find her bed and collapse. Not to sleep. But to be.
I completely understand because sometimes we all need that. Having lupus seems to result in me needing more of those moments. Of course having lupus also means being exhausted in a very different way. A way that no rest fixes. No amount of collapsing fixes, but it works some how to just collapse and simple be.
So the four-footed one collapsed n her bed with her toys and I grabbed a book to read. Because sometimes collapsing means reading a book, or checking things out nine. It really doesn’t matter.
So if you feel like needing to collapse, consider doing yourself a favour and listening to your body or mind. Take a break. Collapse however you do that. Because sometimes we all need to be able to collapse into nothingness.
I was asked today, that’s day of Lupus Awareness Month, if I saw myself as a warrior or survivor of this illness. It’s an interesting question, and one that is not easily answered. Part of the issue is how I interpret the words and the other part is how I see myself in conjunction to those words. Let’s breakdown for a moment.
Warriors are strong, battle prepared individuals who are typically trained for their fight. If only I had been trained for the life one lives with lupus. I guess it’s fair to say I have been trained, and still am in training, as it is on-the-job learning for the most part. Keep in mind what works for one person may not work for anther due to the individualized nature of the disease. So to me warrior doesn’t fit. It also doesn’t fit because I’ve learned that fighting against lupus is not going to help matters. I needed to learn to live with the disease to get ahead.
Survivors are people who have made it through something. As in there has been an ordeal with an absolute end. Again this is troubling too. Why you ask ever so politely. The thing is I am still living with lupus. As in it isn’t over yet. So no end, just a continuation. To take it to the nth degree, as current treatment goes, I will most likely die from a complication brought on as a subset of lupus. So I don’t see that as being a survivor.
I am a lupus patient. I am a woman who lives with lupus. I am an employee with lupus. The list goes on. But I am also so much more than anything …with lupus. There are, of course, whole aspects of me that do not need to have lupus. So I struggle with how to identify myself and my life with lupus. In fact many will point out that I do tend to post more about lupus during May and not much during the rest of the time. This is somewhat deliberate as an individual I am very clear that I am not my lupus. The drawback is I fail to advocate effectively. So I’m not sure how to answer the question. And I’m okay with that.