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!
Do you mind if I sit here? I don’t mind sharing the space, I just need a place to rest.
What’s that? Oh no, I’m fine. It just happens to be one of those days. Maybe you’ve had one of them yourself. You know the kind where as soon as you get one thing finished something else moves up on the to-do list and so you keeping going at that pace? Yeah it’s been one of those days. And the to-do list keeps growing rather than getting smaller.
Yes I see you do know the kind of day I’m talking about. Sometimes I wonder why we bother with to-do lists or anything like that. Sometimes I feel like doing just what I want to do. Is that so wrong?
I’m glad you agree! Some people seem to be unstoppable. They just keep going and going, never worrying about those to-do lists. I wonder what those people do to have that much energy when I have days where it seems that breathing takes up a huge amount of my energy. Oh sure I could stop breathing, but that sort of defeats the purpose of it all.
Yes now that you bring it up, not breathing also means avoiding all those to-do lists. Hmm that is interesting. But I think I will pass.
What’s that? Oh, no I don’t have a lung condition. I have lupus. Which sometimes makes it seem like I have a lung condition. Or a heart condition. And sometimes I just don’t have enough energy for those to-do lists!
Well thanks for sharing the space, I need to get on the next thing that I can manage on my to-do list.
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.
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.
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.