Beloved is not the type of man to give in easily. He isn’t stubborn as per say. But he knows what he wants and he is not afraid to run an obstacle course or what have you to get what he wants. And if what he wants requires waiting, then so be it. If what he wants requires learning a new skill, no problem. What ever it takes to get what he wants in an ethical and moral way, he will do.
These are admirable traits to be sure. And if I’m honest I know I’ve done a few of these very things in the past myself. There’s nothing wrong with working for what you want and pursuing your dreams to your fullest, leaving no stone unturned so to speak. And yet today this very trait of Beloved’s irks me.
And it irks me because I do not like the impact it has on me. I like living my life freely, doing as I please, and making choices as I wish. Beloved on the other hand has this weird hang up about life. He seems to want to extend his. He thinks that everyone should do anything and grasp at any offered piece of advice, weight it and then try to extend life. He does not live with a chronic illness that is trying to slowly kill him. He does, however, occasionally live with me and I do live with said chronic illness.
There is a point where trying everything just gets, well, tiresome. And there are too many disappointments, twists and turns and suddenly you just don’t know where you are any more. So well Beloved doesn’t give up easily, he also hasn’t walked a mile or even one step in my shoes. Because he can’t. And what he can’t grasp now is that I’m tired of chasing the latest or greatest new thing. So I’m not. I’m just resting on that front, doing research and waiting. And he, for once, cannot seem to wait and sit still. It doesn’t come easy to him.
You never really know what’s happening beneath the surface. Some people are phenomenal at wearing disguises. The cracks are well hidden behind masks and illusions.
Beloved tends to be a calm pond, barely a ripple crosses his surface. Typically when it does, when he sighs in exasperation, it’s an indication that not only is all not right in his life, but what is wrong is seriously wrong. Swift currents run beneath that almost peaceful facade of his.
He’s not a man prone to snapping, getting cross or short with anyone. And yet today he was. He was short with the four-footed one as she demanded in the house and then out of the house. Repeatedly. For hours on end.
He was short with our neighbor who offered to help with some of the work in the garden. To be fair, our neighbor has an amazing green thumb to our black thumbs and so our neighbor took pity upon the plants.
Mostly though he snapped at me. He snapped because I was supposed to be elevating my swollen foot, but he wanted help wi the house work. He snapped when I got tired of the barking from the four-footed one. In fairness my foot is throbbing and in pain, but apparently that’s not something I should have said or expected to be accepted as a reason.
He snapped because he didn’t want to be doing stuff, he wanted to spend his time his way and saw my inability to do things as me sitting and doing what I wanted. Except I really didn’t want to sit today.
I get it though, I do. When someone you love has a chronic illness like lupus it’s easy to mistake his/her exhaustion or pain as signs of being lazy. And it grates on you. It wears you down the way the pain wears me down. And it isn’t the life you signed up for; you signed up for a life of collaboration and team work. I get it. I live it. Every day as I struggled and find my place in this ever shifting world of limitations and new expectations
Its times like this when I just want to tell him to go. Just go and do what he wants. I will find my own way, some how. But he doesn’t. Because there is this odd thing called love and that tends to overcome al these annoyances that make you snap and get short at times. Those are the times he needs some space from my and from him. So if anyone is looking for a short-term house guest who’s a decent cook let me know and I will send him over. You don’t have to hurry to send him back. He needs a break from lupus.
I came home in the light of the morning; the house was still dark and still. I let myself in, slipping through the door silently so as not to draw attention to my return. The four-footed can be a light sleeper at times, so I did not want to give her reason to stir.
Except as I turned to head into the kitchen there she sat. Just looking at me. No barks, no whining nothing. Just the stare that said everything. From the back corner, Beloved got up out a chair and said, “well then, that’s that”.
Yes I guess it was that and in the that, there was a ton of unsaid words. Hurt would hide between the silence of the words, waiting to exhale without drawing attention to itself. The hurt would stand in for the unsaid accusations and the incredible guilt. Because I missed the transportation back. Not on purpose, not really. Just a little. Maybe.
I didn’t plan to be gone that long, but then I didn’t understand how randomly the transportation would come to bring me home. I didn’t think they’d wait up for me. And of course they did. And all that was left unsaid spoke in volumes enough to shake me to my core. I wanted to shout at them, to tell them that I don’t know when or how I’d live my life right, but I was going to enjoy it as much as I could while I could.
And yet neither of them deserved that. They waited, worried, fretted and stressed. While I, well, I stayed out and played a bit. Ignoring my health, my rest, and yes them. Because a chronic illness can mess up more than just some of the stuff you thought you’d have as a future.
I never sit on examination beds in the doctor’s office thank you very much. No matter how many times well-meaning nurses suggest I “hop up on the table” I never do. I’m perfectly capable of sitting in a chair if it’s all the same. My doctors all know this; one of them even understands my aversion to being on an examination bed for dealing with lab results, medications and such.
Today I had the pleasure of educating a new nurse about my lack of willingness to pop up on the bed when she asked me to. I explained to her there was no need, but she insisted that is where a patient belongs when she is seeing the doctor. I patiently explained to her that we were reviewing lab results and would be doing so from the chairs, plus this saved her from having to change the stupid paper covering after my visit.
She was a determined young thing. She insisted. She threatened that the doctor wouldn’t see me if I didn’t cooperate. She even said she’d have me removed from the office and from being his patient. Because I wouldn’t sit on the bed. Now I get it would have probably been easier to just hop up for this one time and get on with things. Except the principle of it all.
Finally in a fit of exasperation, I asked her if she was chronically ill. With a mild sneer she said no she wasn’t, or she wouldn’t be working in his office. So I explained that being chronically ill meant way too many opportunities to hop up on the silly little bed thing. That once and awhile a chronically ill patient wants to be seen as a normal human being. Not sickly, or unwell. So when it wasn’t warranted, I simply did not “hop up” and wait for the doc.
It was at this point that my doctor walked in wondering what was taking so long and where the heck my chart was. He knew I was in the room, he thought the nurse had wandered off with my chart. Instead he popped in to hear me explaining that I would sit in the chair because this visit was a “chair” visit. After he greeted me, he assured her it was in fact a chair visit and he gently took the chart out of her hand.
After the appointment the nurse was standing near the reception desk, which is where I needed to go to make a follow-up appointment. She stared at me until I thought she would burn holes in my body. She loudly told another nurse how she had “never been treated so rudely from just a patient”. It was the “just a patient” part that got me. I’m not just a patient. No one is. To consider me as a “thing” that was to be tolerated was too much. Thankfully the other nurse provided the education this time while I booked my appointment with the receptionist who was apologizing all over the place. Of course both the receptionist and the other nurse not only do I sit in chairs, I have a backbone and will speak my mind if I feel it is warranted.
There is an art to living with a chronic illness. Some way to balance the illness with scraping life into a semblance of normality. Some people figure this out early on in their journey of being chronically ill. Some people figure it out later on. Some of us never figure it out.
Every day I manage to fail a bit more or less at this art of living with a chronic illness. Be it forgetting my meds or pushing too hard. Be it ignoring the rules that keep me safe or ignoring the warnings my body is sending out. It shouldn’t be this hard, I keep telling myself as I dust myself off from the latest spectacular, or at least somewhat interesting failure.
Don’t get me started on dating while being chronically ill because if not for being an incredible human being, Beloved and I would not have dated. His patience and understanding, his ability to ride the rollercoaster that is my life made it possible to date and move on from there to something more. His compassion and caring, not to mention making time for me based on when lupus would permit it, well it was nothing short of being remarkable and unheard of in my life. The fact that he remains, that we have grown into something else and that lupus still hangs around is incredible.
It’s wretched at times, and precious most of the time. It’s hard to explain or define, but we have managed to make it work, despite my failures at getting life with chronic illness right.
When you are young, the first tastes of freedom are small, fleeting and fenced in. For me freedom meant climbing on a swing and allowing myself to swing as high as I could for as long as I could. My parents didn’t seem to mind too much provided that a) I came when I was called and b) I did not jump off the moving swing. I didn’t always live up to those rules.
The next real taste of freedom was walking some place all by myself or taking off on my bike somewhere. Again there were rules, not that I always followed them (it’s sort of a theme in my life), so it wasn’t full-fledged freedom, but it was a start. After that came the car which took me far away, fast or slow, as the world opened up to become something so much larger.
I had always envisioned my life as an adult full of freedom and doing more or less what struck my fancy provided I met my obligations. Except that hasn’t really happened. You see when you have a chronic illness like lupus you suddenly find this concept of freedom being impinged upon. Doctor appointments, lab tests, rules, and such all get the in the way of doing what you please.
On top of that there is the physical price this illness makes you pay. You have to weigh your options of doing one thing at the cost of so much energy, or perhaps making lupus come down hard on you because you didn’t follow one of it’s silly rules.
Some days living with this illness feels like someone is taking away my freedom. My freedom to do what I want or live how I want. Other days, lupus seems to take a backseat, just along for the ride.
Lupus makes for an odd partnership, and I’m not so sure that I would have volunteered to partner up with lupus on my own. And yet here we are, partners for life! Please don’t misunderstand, I don’t think anyone would partner with lupus on his/her own, or just because.
But since having lupus in my life I can say that I have learned many things that I might not have otherwise learned. I am stronger than I thought I ever would be, frankly than I ever thought I would have to be.
I have learned that pacing is important when it comes to using energy and strength wisely. Lupus continues to try to teach me on the importance of pacing. This is a long, drawn out lesson as when I feel like my old self, or at least close to my old self, I rush to make up for lost time. When I rush to make up for lost time, doing too much or not resting enough lupus comes up and smacks me upside the head.
I have discovered that life itself is an adventure, full of ups and downs and frankly sometimes both things happening at the same time. It reminds me of when I was a child at Disney riding on the spinning cups. Disorienting and somewhat exhilarating the same time. Yes I said lupus is exhilarating, never really sure where or how we will stop, just knowing that lupus doesn’t always lead this dance.
Most of all lupus has reminded me what unconditional love is. When you are made unreliable due to chronic illness people drop out of your life. Those who stay are the ones who love you unconditionally. They are the ones who will fist fight the raging wall of lupus with you. They have your back.