lupus awareness

May 29, 2022

Love And Lupus

No matter how hard I try, there is no way to really explain what it is like to live with lupus. I can talk about how it affects me; I can use words to try and explain what something feels like. But I will never really be able to explain it fully.

It becomes near impossible to explain and describe lupus to my loved ones. At least it is if I don’t want to create cause or concern. So I gloss over the harder pieces, the painful pieces. I do the best I can to hide the stiffness and the pain.

Oh sure, those who know me best can see there is something wrong. I can’t prevent that. However, I can prevent them from seeing the worst of it, from describing it in darker terms.

You never want people to know that while you are doing something with them, your joints feel like they are on fire, filled with glass shards, and crumbling. All you really want to do is find a place to settle in and stop using your joints, but your loved one wants you to do something just a bit longer.

So you hide it and try to carry on because it’s bad enough that these people have extra worries about your health.

May 28, 2022

Lupus Lies

Of course, you read about people’s medication regimes, medical appointments, and the symptoms. That’s what happens when you first get your lupus diagnosis.

Sure, in time, you will read about things people do to manage or control lupus, and you will read about diets and such. However, it is rare to read about the emotional side of lupus.

We don’t talk about how much lupus can make us feel like a burden to our friends and loved ones, especially when we are in a flare. Yet, it’s not possible to ignore those feelings of being a hardship or trouble to the people that matter most when you are unable to do things to help out.

Something else that we don’t talk about much is the hopeless feelings that kick in when we are feeling awful. These feelings can be overwhelming. They aren’t true, these feelings. We are neither burdens nor hopeless. But it’s hard to recognize this when you are going through these active moments of lupus and thus unable to be all you want to be.

Something else we don’t talk about is the importance of finding support among people who know what we are going through. Support and encouragement can make a world of difference when lupus is active and telling us lies.

May 27, 2022

Behind And I Don’t Mind

There are days that I feel like I’m always running behind. I know everyone feels that way from time to time. However, it seems that with lupus, I am running behind more often than most people.

Lupus has made me slower due to swollen joints, pain, and brain fog. This much is true. But lupus has also made me slower because it demands that I pause.

I pause to consider my options. If I spend my energy doing errands or cleaning the house, it will mean I won’t have the energy to do other things. It may mean not having the energy to spend time with friends or enjoy an evening out.

This pause gives me time to consider where I should put my limited energy resources for the day. It lets me weigh my options. I can carefully look at the day’s priorities while choosing what bits of fun or joy I can fit in as well.

Some days I find the joy or fun in knowing that I can spend it with a good book during the rest period. These moments can make the energy expenditure of doing chores seem a little less demanding or a little less overwhelming. If I didn’t have lupus, I wonder if I would have the time ability to pause and try to balance life.

May 26, 2022

None Stop Gifts

Someone told me that lupus is a bit like the gift that keeps giving. It may not give you what you want, but it will most certainly give you things.

Prior to having lupus, I had never heard of, let alone received, a rheumatologist. If you don’t know what one is, it’s a doctor who specializes in diseases that affect the joints, bones, muscles, tendons etc. Another way to look at these doctors is to say that they specialize in systemic autoimmune diseases, such as lupus.

Another gift that lupus gave me is the gift of having a set schedule for taking medication. Before lupus, I didn’t really take medication and was certainly not on a schedule of any type. However, since being diagnosed with lupus, I now have a schedule for my medication that I stick to as best I can.

Lupus gives me oodles of chances to interact with various medical professionals. More than a person really should have for one person, yet I am with several specialists and my own set of people who draw my blood.

If I am honest, some of these medical professionals have become friends, not in the sense of your typical friend, but friends nonetheless.

And that’s just the tip of the iceberg of gifts that lupus keeps giving me.

May 25, 2022

Whatever Happened Happened Without Notice

Some days I wonder what happened to the busy life I had, where I was doing mostly what I wanted when I wanted. That life changed rather abruptly when I was diagnosed with lupus.

It’s funny how a diagnosis can be a huge relief, proof that what you are experiencing is not just in your head. But, of course, that’s the initial emotion that runs through your very being. It doesn’t last. It cannot last.

You see, after the diagnosis, you end up finding yourself in a whole new set of expectations and rules. Once diagnosed with lupus, I suddenly had a set of rules to follow, a routine to adhere to, and a whole new set of doctors to work with.

With all those changes to what had been a normal lifestyle, naturally, everything was different. So now I am busy doing things, just not the things I want to do when I want to do them. So now, I’m busy doing things to control lupus, manage lupus, and basically letting go of some of those things I always wanted to do.

Lost in the whirlwind of managing lupus are the hopes and desires I once had. Now they have shifted to something different, almost without me realizing it.

May 24, 2022

Flaring Up

Have you ever thought that you would no longer have your chronic illness if you just did everything perfectly? I mean, if you followed all the directions on your medication exactly as written, drank pure water, ate only the healthiest of foods, exercised, and got eight hours of quality sleep every night, you’d destroy the disease.

Except for chronic diseases like lupus, don’t care that you do everything right. Sometimes they still flare up or misbehave. Why you ask? Because there are so many things that can trigger a flare. Things like changes in weather or air pressure. These things are that are well beyond your control.

And I do believe sometimes lupus feels as if it is being left out. So it insists on making an appearance. No one likes to be left out, and at least my lupus is the same.

Naturally, when something important or special happens, lupus wants to make an appearance. And I’ve learned over the years that no matter how perfectly I do everything, I cannot deny lupus’s appearance. Oh, how I try!

Leading up to the moment, I will ensure I get more rest. I will be more mindful of what I eat and what activities I do. And still, lupus tends to flare up.

May 23, 2022

Too Hard Indeed

I used to love my bed mattress. It was just right for me, not too hard or too soft. However, during this current lupus flare, it is as if my just right mattress has turned to cement. There is no way to get comfortable in this bed.

I’ve started putting pillows down on top of the mattress out of desperation or creativity. It makes for a lump sleeping experience, but at least my aching joints feel a little better.

The thing is, with this lupus flare, all of my joints are in pain. Normally, a few hurt more than others, but they are all screaming out this time. So during the day, I try to distract myself with work. This trick doesn’t always result in success, but sometimes it offers just enough to let me focus on something other than the pain.

At night though, I am unable to distract myself with anything. What makes it worse is that I need sleep. However, I find it hard to sleep when I am in pain. Instead, I seem to fixate on the degree of pain and how it is radiating from my joints. So, naturally, focusing on the pain makes everything seem worse while also preventing me from sleeping.

And that takes me back to my mattress and how much I used to love it before this last lupus flare.

May 22, 2022

I Was Going Great Until

I was going to accomplish a lot today. Or so that’s what I thought when my morning started. It felt like a great day, and I was confident in what to do and when to do it.

To be honest, the early parts of the day were good. And then brain fog hit. Brain fog is one of the side effects of lupus. Okay, sure, a side effect isn’t the right word, it’s a symptom, but you get my drift.

The thing with lupus is you have symptoms that completely alter your day or life. Not that people can tell that by looking at you. To them, you are facing the same things they are facing, so they don’t always understand our responses.

When brain fog hits, there are times that it means sluggish thinking, but there are other times I struggle through a thick fog that prevents me from finding the right word. Of course, no one can see this, but I’m sure they wonder why my normally healthy vocabulary suddenly becomes lacking. They may even wonder why I pause before speaking or struggle to recall something that was foremost in my mind the day before.

You see, not only am I coping with lupus, but also the side effects, er symptoms, I mean, and you can’t always tell. So please, if you see me looking a little lost or confused, have a bit of compassion and give me some time to sort it out.

May 21, 2022

Learning Lupus Lessons

I used to love those rainy days, the ones where you settle in for a marathon of reading or watching a movie or show. The kind of day you hunker down and aim for comfort, and it’s a wonderful break from the regular days.

I used to love these types of days because they were rare. I rarely took time to just do nothing except enjoy some downtime. However, when lupus started to become more prevalent in my life and required more of those slower-paced days, I lost the joys of a rainy day.

The rainy days did not change; they still came rarely. However, I had more days where I was treating them as if they were rainy days. And so rainy days lost their allure.

Instead, I’d take a day where lupus wasn’t so intense and cram it full of everything I could think that I had missed doing before. Naturally, I’d end up paying for it the next day. But it was like booking a trip to some exotic land where you have twenty things you want to do but only have two days to fit it all in. It’s simply not possible. Lupus has taught me to enjoy the moment, embrace the good and recognize the bad isn’t going to last forever. And in those bad moments, there is still good to be found.

May 20, 2022

Chronic Problems or Lupus Revisited

The problem with a chronic illness like lupus is that it’s always there. Sometimes it lingers in the background, and other times, it’s right there in the front. Lupus doesn’t go away. It doesn’t really take a vacation or get tired of being your new best friend.

Now lupus, or any other chronic condition for that matter, is not what you’d pick for your best friend. It’s more like a friend who’s been forced upon you.

The problem with having anything forced upon you is that you come to resent it. You didn’t ask for this new thing to be a part of your life. You certainly wouldn’t have chosen it, not if you had been told in advance it would lead to exhaustion like you’ve never had before or pain, etc.

So you start living with this sense of dislike or hate towards a condition that’s now a part of your life. And the problem with living with this kind of hate is that it eats at you. This kind of resentment makes everything harder.

Look, I didn’t ask lupus to be a part of my life. I am not thrilled with some of the things that come with lupus, but I refuse to let it define my life or make me miserable. Despite the pain, the exhaustion, and rest, I still find the good.