4 Things About Living with Lupus

microbiology-163470_640May is Lupus Awareness Month. I’ve written some things that I had learned about being in a relationship with someone with lupus. I’ve tried to write this in a non-relationship specific way, but some of what we are/do may have crept in. For those of you who don’t know us, I’m in a long-term Master/slave relationship with my slave, who has lupus.

1. Know the illness and how it affects someone.

Lupus is an autoimmune illness where the body’s immune system “attacks” the person’s own body and organs. Lupus is a chronic illness, meaning that its symptoms are long-lasting.

Lupus can have any number of effects, the most common are inflammation, pain and damage to joints and/or internal organs.

The illness typically happens in “flares” – periods of more severe symptoms – and remissions – periods where the symptoms are not as severe.

These basic facts had a profound impact on my slave. Her life changed as a result of lupus. Pain, fatigue and symptoms is now what dominates her view of her health. The symptoms seem to vary in random fashion, although we’ve found that there are things we can do to manage those symptoms.

For someone with lupus, their mental health is just as critical as physical health and will be affected. A strong person who was used to no physical limitations most likely will feel betrayed, angry and grief over their changed body and health. They most likely will be frustrated over their needs now – pain management, rest and symptom management. Things they took for granted will be affected and need to be thought about. An example – planning ahead for rest and dealing with changes in plans when symptoms occur suddenly.

Most likely, similar to my slave, their behavior and abilities will change. Morning person? Probably not, anymore – the fatigue factor can affect someone’s ability simply to get out of bed. Able to work 10 – 12 hours a day? Probably not, anymore – or at least without significant impact later on or tomorrow (see spoon theory). Mind like a steel trap? “The fog” could impact that – causing that person to struggle with simply remembering words or their next thought.

For any power exchange relationship, I think that your expectations on the relationship and what each of you can now do or how you will navigate your journey together will need to take those facts into account and make no mistake. They are facts. As surely as the effect if your partner lost a limb, or became blind, deaf and/or mute, lupus will affect them. You will need to take stock and responsibility for assessing the impact to your dynamic and adjusting accordingly. We had to, and we still do.

2. Know the spoons and the cost of things in spoons. (the spoon theory)

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

REQUIRED READING! If it doesn’t make sense, I recommend that you read it again and follow along with your own spoons and examples.

Once I understood that my slave was now looking at life and daily activities on the basis of spoons, I understood better how to set my expectations and the directions for her. This was and is the single fundamental truth now – that she has to manage herself far more carefully on a far more finite amount of energy and ability. I have to keep that in mind when we’re interacting over the day, and she’s gotten much better about telling me when my expectations exceed her spoons. She’s less good about managing her own expectations exceeding her spoons, but we’re working on that.

This is not the end of our dynamic, though. Far from it. It may seem like we just turned over “control” to an illness, but in reality, it was more about adjusting our expectations and expecting change to occur. That’s where knowing ourselves and what is at the core of our dynamic was important.

3. Know yourself and what is the core of yourself and your partner.

It took some time for us to understand and adjust to the changes that we had to make to account for lupus. It forced us to ask tough questions in a new context. Questions like – why are we in a M/s relationship? What is the core foundation, the bedrock that we can depend on, when we strip all the rest of it away? What is it that nourishes my Master’s heart and her slave’s heart? What are the things that are most important to us? Why are they important?

We had to ask these questions so we could understand how to keep our dynamic going and still share this M/s journey we had started. Things that we had done before weren’t possible, at least in the same way they had been. We had to rethink things and establish a new approach, a more flexible approach and an approach that gave us the things that mattered to us.

Here’s an example… Before lupus, we had a ritual of where my slave would make me coffee in the morning. It was a personal moment, her making the coffee the way I wanted it, bringing it to me, and a quick shared moment, perhaps a touch and kiss, before the noise and chaos of the day took over. She got to fulfill her desire for personal service in a close and intimate way. (and really, in the morning, the most wonderful service is coffee… at least to a die-hard coffee drinker like myself) For me, I like her paying attention to detail in making and bringing me coffee, and that shared close moment where we could connect.

After lupus… because of the fatigue, it can be difficult for my slave to “spring up” in the morning. Sometimes damn near impossible. So having coffee served to me when I get up came under the magnifying glass and we adjusted. We’ve kept the ritual of her preparing my coffee, but now she prepares the machine the night before. While she’s struggling to wake up, I make my own coffee. I may even make hers. However, when she is up and about, she makes my coffee. I now ask for her to get up and get me coffee a lot more. We still get the personal service yaya, and the physical closeness yaya. Flexibility to plans and expectations serves us well, because we have a bedrock foundation. ANYTHING can be changed to become a shared moment of M/s energy for us, if we keep our dynamic in mind.

The best advice to all this that I can give is this – When you are looking at your partner’s changing symptoms and health, you’ll be adjusting to both what they are capable of as well as what nourishes your hearts. You will want to do the things that still speak to your hearts – or find new ways of speaking to those. That’s important, because your partner is already dealing with their body changing in ways they don’t want… they are going to be looking to your relationship dynamic as an anchor that they can have during these times. For my slave, and I, our relationship and anchors within that dynamic have helped us through some pretty rough times, healthwise.

4. Don’t be afraid of lupus, just be aware.

All of this sounds overwhelming and ominous. Lupus is a serious illness. It has life changing impact. It is not contagious, it is not necessarily life-threatening and the symptoms can be managed. Knowing the symptoms and effects will help you to be aware of the illness. Being aware of the meds your slave is on, the actual doctors and what they are treating will give you knowledge of what to look for. With knowledge, symptom management and good planning, a person with lupus can live a long and fulfilling life. It may not be easy, but it will be worth it.

It’s hard not to let all of the related issues bring us down: between the symptoms, health care needs, tracking of doctors, tracking of meds, taking meds, adjusting to how the person feels during the day, how that changes quickly, how that introduces unpredictability into anything, how that can halt attending an evening, an entire event… all of those and what feels like a million other “paper cuts” can feel overwhelming.

It’s OK to feel that way, but our mental health is one thing we have to guard very well. Depression, anger, mood changes and even a person’s outlook can change when they have lupus, or their partner has lupus. A common issue I’ve heard of is denial – and that’s a dangerous river to travel.

One other thing about being aware is being aware of the future and the plans we should make. If you are in a long term relationship, I highly recommend that you and your partner get the assistance of health directives or healthcare power of attorneys in case either of you are in a situation where health care decisions have to be made and you’re not capable of doing so. Although it doesn’t make for great erotica, estate planning for the worst is a good thing to get over and done with. I’ve had to answer questions like “what if I go? What if my partner goes? Do I have responsibilities (family, obligations) that need to be planned for?” Lupus is an unforgiving illness and I believe it’s important that you should take the time and responsibility to get your affairs in order.

Being aware for my slave and I means that we know, acknowledge and understand, but we try not to let it overrule our dreams and hopes. My slave and I still are in the running in the Master/slave title track. (as of this document, we’ll be running at Great Lakes Leather Alliance in August 2013 for the GLLA title.) We are full members (and officers) in a back patch leather club – Chicago Leather Club. We volunteer for events and organization. We attend runs and events across the country. We teach about M/s dynamics. We play when we can. We also have a large family to take care of as well as all those other mundane realities.

It is a lot and it is about managing those things. We know that if we have to do something early the next day, we better make sure my slave rests up a day or two before as much as possible. We know how to pace ourselves better and we know to concentrate on the important things. We make each day count as best we can, aware of lupus, but not afraid to face it and still try.

So if you’ve made it this far, thank you for reading. I hope you found something informative or helpful. This is an ongoing journey for us. Each day can be different but each day is a good one. I look at angie with a lot of admiration that despite this illness and its cruel, overarching effects, she pushes on with hope and dreams.

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Master Michael S

International Master 2014. Member of: Chicago Leather Club, Chicago Leathermen Group, MAsT: Greater Chicago. Longtime leatherman. One of the Four Horsemen.

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