April 22, 2022

Didn’t Plan For This

The four-footed one was diagnosed with severe arthritis the other day. She tolerated a physical exam that left Beloved feeling weak in his knees. She was a good girl during her x-rays too. She’s taking her medication without fuss; that may have to do with it tasting good to dogs.

I’m no stranger to the pain and stiffness of arthritis—especially when the weather is unpredictable, cold one day and too windy the next. But, I’m also experienced in gently exercising those stiff joints.

We’ve limited the four-footed one’s adventuring distance and time because, despite her struggles, she will still insist on going a bit further. We’ve also changed playtime so Beloved no longer chases her around the house so much as they slowly walk around and play in one spot.

Although I know this is nothing we’ve done, arthritis happens for many reasons; I still feel somehow like I am to blame for not doing enough to prevent this in the four-footed. How much pain she is in can be hard to judge too. The four-footed one doesn’t complain much; she finds a soft spot to settle down and rests. But I know. I know there is pain because I have the same thing, and sometimes it is almost impossible to deal with.

This is not the future or current state we planned for when it comes to the four-footed one, but we will help her be active without increasing her pain.

March 14, 2022

Setting Free My Guilt

There are days that I struggle with daily tasks such as getting the house cleaned, cooking, or even taking the four-footed one for a walk. It’s the nature of lupus at times to remind me that I live with a chronic condition.

However, I can carry out those daily tasks and manage my work most days. But, of course, it doesn’t mean that it is easy. Nor does it mean that I always have the energy to do anything besides my work and chores.

I guess the trade-off is working and keeping up with the little daily things while not having wild nights or crazy adventures on the weekend. But, still, it’s a trade-off I gladly make. But, unfortunately, it also has to be a trade-off that Beloved makes, even if he still has a want for adventures and wild nights.

There is, of course, a heavy sense of guilt that comes to me because I know I am holding Beloved and the four-footed one back from adventures and exploration. In a way, letting them go off to explore independently is my way of setting some of that guilt aside. They didn’t ask for lupus or a life with less energy; they are still there for me and beside me.

October 3, 2021

A Different Kind Of Permission

One of the most incredible gifts I received from Beloved was a permission slip. I know this sounds weird, but hear me out. This official permission slip reads: ‘You are allowed to stay home, rest, take care of yourself, do nothing on weekends or weekdays if you need.’

The truth is, I don’t need Beloved’s permission for anything. He does not own me, nor is he in control of my life. Instead, this permission slip was his way of telling me to put my health and lupus management first because he understands how important it is.

The thing is, this permission slip helps ease the guilt that comes with my condition. I have yet to meet anyone with a chronic disease who doesn’t feel guilty. We can feel guilty about so many things, and it’s nice when someone or some people in our lives get it. And do something to eliminate the guilt.

Of course, I’m a stubborn soul, so even with my permission slip, I still try to push through a lot of times. Usually, this is my answer to showing lupus I am stronger than it. Sometimes it is my way of pretending I don’t have a condition that steals my energy. But, I assure you these techniques do not work nearly as well as resting when I need to and allowing those who love me to help where they can.

September 15, 2021

Washing Up

Here people wash their things by hand. They wash them with a local plant that produces a soap-like substance, and when the water rinses clean, they lay their items out on a clean sheet and let them dry in the sun.

This simple act allows the white cloth to stay brilliantly bright and everything clean and fresh. The downside to this type of cleaning is that it is time-consuming. Typically the time and energy are expended by females while the men take up other types of work.

Beloved manages the hand-washing in our house. Mind you, the stuff he washes tends to be delicate lacey shawls I’ve purchased at the market. Unfortunately, the same stunning shawls are lightweight when dry and impossibly heavy when wet.

Given the state of my hands, I’m unable to carry out the work myself. So instead, I wear the shawls so the beautiful artwork can be seen and admired by many, and Beloved makes sure they are looking their best all the time. It’s a win-win situation, isn’t it?

At least, that’s how Beloved explains the circumstances to me. It makes it a bit better and reduces the guilt when Beloved has to wash them while I accept once again that lupus doesn’t let me do things how I want.

August 5, 2021

A Hair Of A Gift

A friend gave me a gift to get my hair done at a fancy salon. It was for the complete treatment, which is something I’ve not given thought to in years. When I was younger, I had a couple of experiences in salons.

Sure, it was nice to get pampered and have extra attention spent on me, but it also made me uncomfortable. First, I was uncomfortable with the amount of money spent on my hair. Second, I was irritated when the stylist commented on cutting my hair in a specific way to help hide my rash.

I remember having to pull up the courage to explain to the stylist that, yes, the rash was more prominent on one side today, but on another day, it might be worse on the other side or across the bridge of my nose. What I wanted to do was sink into the chair and disappear.

I decided somewhere that I didn’t need to spend that kind of money since I tend to wear my hair practically, so I am not spending a lot of time on it.

I have mixed emotions about this lovely gift. I know that my friend isn’t saying my hair is a disaster. Instead, she’s offering me a lovely bit of pampering. I also know that she’s okay with spending that money on my hair, even if I’m not one to do so usually. I don’t want to disappoint her with what I end up with, but I also don’t want to have high-maintenance hair suddenly. So, for now, I will wait a bit before I use the gift.

July 4, 2021

Chronic Illness Is Unpretty

Have you ever wondered what holds things together when the going gets tough, and the words aren’t so gentle? Do you ever think that with one more tug, things will unravel, and you will be left holding one end of a string that seems to go nowhere?

Maybe my thoughts turn more this way because lupus seems to be more prevalent these days, and I am reminded that Beloved doesn’t have to go through this with me. He doesn’t have to stay, yet he does.

Like the gentleman that he is, he seems to understand the moment I feel unsure and unlovable. He picks up those uncertainties, puts a nice bow around them, and sends them out into the night. He brushes away the sense that I am less than or not worthy of his love and time. He picks up all of that mess, cleans it all up, and assures me that he can handle lupus and me.

He doesn’t understand; he can’t really understand how much a chronic illness can play on one’s sense of confidence. And in those moments of pain and frustration, there isn’t much he can do other than be there with me. To him that’s more than enough. To me, it’s a question of when the glue will let go, or he will want his freedom back.

September 29, 2020

Me Time

Time keeps on passing me by, taking opportunities and dreams with it as it whips by. I know it happens to everyone, at someplace, we lose track of time, caught up in the mundane stuff of daily life.

The key to this is to try and grab ahold of what you can when you can and carve out space for your hopes, dreams, and opportunities. None of this is easy, of course, but nothing worth having is ever all that easy either.

I’ve started to take stock of things, pushing back on what other people see as urgent to make space for my chances and opportunities. This feels unnatural to me and is shocking to people who usually “count” on me for doing other stuff. With time (pun perhaps intended), it will become easy. At least, this is my hope!

The other thing that I am working through right now is why someone, somewhere, made me feel that taking time for myself and working for myself would be wrong. The guilt and everything associated me doing things for myself, taking time for myself, is so intense I know that someone told me and taught me this behavior was selfish and should be avoided. This process also takes time, and I’m okay with it.

August 10, 2019

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.

May 11, 2019

Lupus Never Discussed

When you have a chronic illness like lupus, there are a lot of things that come with it that no one ever talks about. Sure we talk about the symptoms and the medications, but we don’t talk about those other hidden things.

No one told me I’d feel guilty for having lupus, for being able to work or go to school despite having lupus, or for not being able to keep plans with friends and loved ones. Not once did anyone sit me down and say yes along with all these symptoms and side effects, expect to feel guilty. A little preparation would be nice.

Another thing that isn’t fully discussed is the feeling of shame. Yes that’s correct. I feel shame for having lupus. As if somehow I failed to do something and thus ended up with this illness. Or the feelings of shame because of how lupus and my medications have altered my appearance.

Depression is another part that isn’t well discussed. I understand that some people struggle with depression on top of their illness and others do not. I am blessed to not have depression, but that doesn’t mean that I don’t sometimes have dark moods thinking about what could have been or what should have been.

May 8, 2019

I Suck No Thanks To Lupus

I hate needing people to do things for me. I hate needing to ask people to help me. I hate not being able to do what I want when I want. I know that we all need help from time to time. And I know there is nothing wrong with asking for help. I also know that we can’t always do what we want, and most certainly not when we want to do it. Yes I know, it’s a fact of life. However it is a more common fact of life when you have lupus.

Just because I understand all of this, doesn’t mean I like it. And just because it’s more routine in my life, thanks to lupus, it doesn’t mean I’ve found a graceful way to navigate all of this.

The truth is, friends, I suck at the whole asking for help. Not because I don’t have people in my life who would help me at the drop of a hat. I’m blessed and fortunate to have these people in my life. The problem is me. Because I hate asking or help. I can’t explain why I struggle so much for this, but I do. I lack the skills to gracefully ask for help.

And far worse than gracefully asking for help, I am even less graceful about accepting help. Again, not because people do not offer me help, for they do. I just struggle with this.

And naturally people can’t always be there to help me when I want help. That isn’t there fault either. It’s me. Again. Yes, I know, I make things so much worse. You’d think I’d get better at this given how amazingly often lupus brings me this delightful adventure. But no, no I suck at this.