Chronic illness

December 8, 2022

Doesn’t Mind

Sometimes, when things slow down a little and nothing urgently requires my attention, I marvel at how we got here, how the four-footed one joined our lives and fills each day with a sense of purpose and energy that wasn’t there before.

In those still moments, I can recall all the things we said we were going to do in the future, which has suddenly become the present. I mentally tick off the ones we’ve completed and consider where the other ones are feasible or if we even want them anymore.

Sometimes I consider how fortunate I am. But unfortunately, not everyone with a chronic illness finds unconditional love, a job that accommodates them, and finds their way forward.

I count many friends who’ve become single or deemed undatable due to health issues. Yet, I know others who struggle to manage their disease in conjunction with their employment status because bills need to be paid, and life goes on.

I’m blessed to find someone in my corner regardless of my health for the day, evening, or week. He is okay with last-minute changes or going to events solo. He doesn’t mind the tears, frustration, and missteps that are a part of living with lupus. He doesn’t care that our plans have changed or our future dreams are different now.

August 25, 2022

We Try

I’m selfish, and I’m stubborn. I’m broken because I am a human who has had experiences. Some days I wonder what it is that Beloved sees in me. What’s a man like him doing with someone like me–someone who will always need someone to wait for her?

Yes, Beloved knew what he was getting into when we got together. He knew I had health issues and was stubborn, selfish, and fiercely independent. And yes, you may say that he is a bigger person for trying even as things sometimes go pear-shaped and the bottom falls out.

There are days I know I can’t be what he wants me to be. He wants, and maybe even needs, me to be the person who accompanies him to awards ceremonies and fancy dinners. He deserves to have someone attend his book signings and all the rest.

I know there are times he is torn up, broken, and keeps it all inside when he watches me have to cancel plans again. I know he struggles with holding his tongue when I bite off more than I can chew and still try to get it done while ignoring my health.

I am fortunate that he doesn’t ask me to change, which would be impossible, and instead just tries something different while supporting this broken human that I am.

May 30, 2022

Not Impossible

I know I’m not supposed to be in the sun. I know I’m supposed to wear sunscreen, sun-protecting clothing and a hat. I know all of this. I also understand the cause and effect of sun and lupus.

However, knowing all of this and understanding all of this doesn’t mean that I always do everything that’s right for living with lupus.

Sure, some of it may be a bit of my rebellious nature coming through. And sure, some of that is due to circumstances that are beyond my control. However, some of this is also down to the fact that one simply cannot live so tightly controlled and still enjoy life.

So sometimes I get too much sun or forget my hat. There are days that the sunscreen isn’t applied as often as it should be. I know, as I’ve always known on these types of days, that living with lupus successfully requires balance. Balance doesn’t mean forgetting my sunscreen or hat, and I won’t offer that up as an excuse either.

Instead I will say this, balance is never an easy thing to find and and even harder thing to maintain. Trying to find balance with lupus is an extra special type of hard, but it is not impossible.

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 4, 2022

Limping Along

The four-footed one let out a sigh that carried the weight of a week’s worth of worry. Over the past few days, her limp has become more noticeable.

When she first developed the limp, I thought it was just a tiny twinge or something. It would go away, surely, I reasoned. But over time, her limp seemed to come and go before it suddenly was almost always there.

Between my medical appointments, I took her to the vet. I was still confident that this limp would resolve itself and felt sure the vet was on the same page. Except the vet turned the world around

The words “degenerative arthritis” were said. Medications were prescribed and obtained. But, unfortunately, the limp was here to stay. It was here to stay, but it could also get worse.

I mourned for what was to come. Not because having a dog with a limp is an issue for me. Instead, I mourned for the four-footed one’s diagnosis, similar in so many ways to my own. But in a way, having lupus also gives me a better way to support the four-footed one because I know the joint pain and stiffness she will experience. And I know that sometimes no matter how well-meaning people are, you need to be alone.

December 20, 2021

A Little Different

Once upon a time, there was a young girl who was confident and knew exactly what she wanted from life. She made plans based on getting where she wanted to go. She created opportunities for herself and boldly stepped forward into the life of her dreams.

That girl got lost, though. She felt her confidence slip away, and with it, any sense of certainty was gone. Some people say it happened to her overnight, but that’s not true. Instead, it happened in slow, small increments until there was no denying that she had lost that sense of confidence and knowledge.

Some people say that it was a temporary thing, and she’d be back on the path again with a bit of time. However, the girl knew differently. Things had changed. She had lost her health and any idea of what her future would look like with it.

The girl had to fight to get her health back on track, but she also had to forge a new future for herself. One that made space for the new her while still letting her achieve things the old her had dreamed about, even if it meant achieving them in different ways or finding something similar to her original dream.

October 8, 2021

Tight Spot

Beloved has the spot near his left shoulder that seems to hold tension when no other place in his body does. At first, I thought this was stress-related, and as he relaxed, the tense muscles would eventually settle and release.

Even when he isn’t stressed, this one region seems to be as hard as a brick. We’ve tried heating pads, muscle relaxants, and stretches. But, unfortunately, none of these have worked.

He found an excellent massage therapist who has spent an hour at a time using heat and deep tissue massages to loosen up these muscles. Over several sessions, they have come close to getting the pain relief he was seeking. However, the muscles have never fully relaxed.

Today the therapist told him that this might be more than just muscle tension. She indicated that whatever is at the root of this may be due to a type of structural imbalance that she cannot address.

The therapist’s recommendation was to continue with the heat packs and massages as need be. She hopes that Beloved can avoid the worst tension and thus avoid the most intense episodes by doing so. Admittedly, it isn’t the ideal answer. However, compared to what it could be, this is a decent compromise.

Having lived with chronic conditions for a long time, I understand the trade-off of finding a decent compromise entirely.

September 17, 2021

When You’ve Had Enough, But It’s Not Time

The four-footed one is having issues with the whole concept of bed rest. We knew it would be a challenge when the vet mentioned something about four weeks of bed rest. We made it almost one week before the four-footed one decided she’d had enough of this whole resting business.

I understand her issue. Resting isn’t fun. It is a lot of boring stuff once you no longer need the actual rest and still require rest, so you stay off an injured limb. Once you are used to the new routine, it becomes rather dull, and there is so much still to do. In the four-footed one’s case are adventures to be had and smells to investigate.

Instead, she is stuck in the house, not even walking much because broken bones heal better if you aren’t putting weight on them.

If you are clever, like the four-footed one, you find ways to move around still. She’s mastered the art of walking upright on her hind legs. She’s figured out how to hobble along on three legs, although she’s not a fan. The four-footed one is done with snuggles and cuddles. Those actions were acceptable the first week of recovery. Now, she is ready to get back into life full steam ahead.

Shame my chronic conditions demand rest at times, and there’s no avoiding that.

July 21, 2021

The Stretch

I let her gently stretch my leg, wondering when she’d realize that there was more give than typical. I could tell when she reached that point that she realized something wasn’t right. Her eyes were wide; she took a bit of swallow and asked, carefully, how my leg felt.

I grinned and told her it felt just fine. She could do the same with the other leg, and then I’d feel even. But, I know I should have told her about my condition before. I should have warned her that my legs are a bit odd. The ends of the bone dying and the tendons and ligaments oddly stretchy resulted in anyone pulling on my legs being able to draw more than they typically should. But, if I had warned her, I’d miss out on my small moment of fun.

When you have health issues sometimes, it’s hard not to take their oddities and turn them into your moments of entertainment here and there. Sure, it’s not nice to the unsuspecting person, but heck, sometimes you need a laugh. Sometimes that little extra that someone does to your body is exactly what it needs to feel, well, almost normal again.

May 27, 2021

Topping

My neighbor gave Beloved a gift for me, just a little something. She said I might enjoy the outdoors more with this gift. It was a hand-woven lightweight tunic-style top with long sleeves.

When we had first moved here, this neighbor had noticed that while Beloved wore shorts and short-sleeved tops, I almost always wore pants and had my arms covered. While we were at a gathering, she finally got up the courage to ask me why I dressed the way I did. I didn’t dress like the locals, but I also didn’t dress like most people who moved here either.

I explained to her that I had a medical condition, lupus, which didn’t do well with sunlight. The sunlight made me sick, I told her. Very ill to the point of sometimes needing medical assistance. It was easier to wear large hats, sunscreen, and long sleeves and pants. However, I struggled with finding clothing light enough to still be comfortable in the heat.

Since then, she has gifted me a few lightly woven tops and loose pants to be protected from the sun while still not overheating. Not only is her skill at creating lovely clothing excellent, but the fact she does it for me means so much.

Things like this have made living with lupus easier.