Not that long ago, a friend of Beloved’s started posting pictures of the rising water levels where he lives. A massive storm had gone thought in a very short period of time leading to rising water levels. He was documenting the changes by the minute and posting it all online.
Now at some point he lost track of what was really happening, he was so caught up in taking the pictures and showing how quickly the water level was changing that he didn’t actually recognize the water was creeping in under his door. I should point out he lives on a hill and has never had flooding before. It wasn’t until he realized his feet were in water that he stopped taking pictures.
By then it was too late. His neighbor had placed sandbags around the door ways to his house and from an open window he let our friend know that his house was dry. Bone dry he said once our friend had said he was up to his ankles in water.
Apparently everything is going to be okay, but this reminded me how easily we can get caught up in the minor details to the point of missing whats really happening around us until it’s too late to respond properly. While I’ve never been in that exact situation, but I have been caught unawares in storms because I was too busy watching the clouds for and roll by to actually recognize the storm was building. At which point I got a bit wet as I hastily sought shelter. I’ve also been suddenly trapped by the sun making a brilliant appearance when it wasn’t supposed to. Of course that time I didn’t have sunscreen with me to reapplying and it had been a few hour shift incentive. Ad bothered with th the updated forecast. So I had to wait for the shade to grow so I could carry on my path home.
And that’s the problem with those minor details that you can become lost in. You become lost in them to the point of not looking up and gathering in all of the information, until your feet are wet and it’s too late to sandbag the doorway.
“It’s nothing really,” I said as the well-meaning nurse clucked over the injury. It really wasn’t that big of a deal on the scale of big deals in my life. It doesn’t mean it didn’t warrant stitches, but stitches are nothing in my world. Not when you’ve had tubes, hoses and are now seeking new organs. Nope, stitches are really nothing.
But of course this lovely nurse didn’t know that. She was thinking I was worried about the amount of blood that I was losing and perhaps even concerned about a scar or two. I gathered that from the way she said that it probably wouldn’t amount to much of anything down the road for people to see. I grinned and told her that scars were sexy. Scars said that you have lived a life, an interesting life. Interesting enough to leave marks on your body. She laughed and told me that someone would be in immediately to stitch it up.
I wondered what she thought after she closed the door. Did she think I was crazy for saying it was nothing when clearly she, as a medical professional, thought that a knife wound requiring more than thirty stitches as not “nothing”. Knives slip, especially when you aren’t paying attention and the item you are cutting is wet and slippery. And the dog is jumping at your back. Stuff happens. Fast.
The doctor came in, stitched it up, gave me directions to look after it and then said he didn’t want to see me in the room again. You’d think I was a frequent flyer or something at this trauma room. I’m not. It just happens that last time I was here, Beloved had managed a lovely deep hand wound as well. And I was fascinated then, as I was now, with the stitches going in and such. So I guess I left an impression.
Shame about the roasted veggie salad that won’t be made now because frankly there was too much blood on stuff to save it and right now I’m a bit off of tomatoes!
I’m not one to nap. Not normally. If the sun is up, I tend to be up. Actually these days I find myself up to watch the sun start to lighten the horizon. I remember, many years ago, my mother telling me that as a small child I gave up on napping early on and was basically on the go. The down side of all this is that I would get horribly tired, but refuse to go to bed because there really is no sense in sleeping.
These days, I nap if I’m truly sick and my medication basically puts me to sleep. Or if Beloved happens to catch me at a rare moment where he can see the crash coming and he will send me off for a nap, with some medication and a story. But today he wasn’t around to catch the crash and to be honest I didn’t really feel it coming as I was focused on other things that needed doing.
Naturally the great crash came as I was in the middle of something important. And no the crash is not me just falling asleep where ever I happen to be. I wish it were that straightforward and simple because then when I wake up all would be fine again. Instead the great crash is a rapid increase of a lupus flare. And when it hits, its not something cured by sleep. It is an intense amount of exhaustion, pain, frustration and a million other things. And yes I know it could be avoided somewhat with rest. I tend to miss that part, which is where Beloved comes in, when he’s around.
Like I said, I was alone today when it happened. However he phoned when I was knee-deep in frustration at this latest setback. And as his usual style, he did not remind me that this could have been avoided. He did not scold me nor tell me I must take better care of myself. Instead he started talking about the stuff he was working on, the history he is researching right now with a soothing voice. He was gentle when he suggested I take my meds now rather than later on.
And now, hours later, I feel slightly human, not great. No where near recovered, just a bit more prepared for the rest of the flare. Because somehow he managed to soothe the beast that is frustration within me and I managed to get a bit of a nap. An hour or two, just enough to shake off some of this and start to get things set up for when the flare gets worse, because there is no way it isn’t going to get worse this time around.
The four-footed one likes to start her day with a huge stretch, a yawn and a good walk. She insist on following this up with a delicious breakfast, which is gobbled rather quickly I might add, and a good game of chase around the house.
Regardless of the day of the week, the four-footed one likes to stick to this routine. She gets annoyed if I change things up. But she does reserve the right to push back on an outdoor activity of the weather doesn’t meet her standards. And by her standards that means if it’s raining too hard we stay in. If the wind is a full force gale, she will opt to just get an extra play session in.
This is all finely and good, except on the days that I’m unable to meet her demands. She has yet to comprehend lupus and how it affects me. When I tell her I can’t walk or run around the house, she simply grabs my finger with her teeth. If I fail to be roused by this approach, she will use pressure with those teeth. And when I still don’t give in, she sulks and ignores me. That is until she wants a cuddle, a scratch or something. Because those are all routine too!
Today was one of those days where I just found myself dragging to work, dragging back home where I could then work on my impression of being a beached jellyfish. Because that’s how lupus made me feel today. Not that I really know what a jellyfish feels like because let’s face it, I’m a chicken when it comes to inflicting pain upon myself for no real purpose, so I have never been able to get one’s attention. And I certainly have no clue what a beached jellyfish feels like.
I do, however, know what it feels like to have minimal amounts of energy to begin with and to expend it completely on things like going to work, working and coming home. It means you have no energy left to do things like play with the four-footed one. It means that someone else has to be picking up the slack because you simply cannot move, not even to get up and cook a meal. It’s hard enough just having to heed the call of nature.
I also know that it means not knowing when your energy will come back, or if it does, to what degree. And I know that it means not making plans too far in advance or too adventuresome because changing plans also can cost energy. Energy is a fickle thing. But so am I. And I’m okay with that. So I have to be okay with lupus being fickle too in how it steals and uses my energy levels.
When I’m a bit more lively, I may have a rather good tongue lashing with lupus about being so much of an energy hog, but for now, I shall be a jellyfish. And hope the four-footed one doesn’t mind keeping me company on the floor. If you need me…I will be down here, somewhere.
I have been called many things in my life. Some of they were lovely and others, well, others were beyond awful. I’ve also been called man you things between those ends of the spectrum.
Recently a coworker has taken to calling me a rock star, a navy seal, hardcore and bad ass. Not all at the same time, as she likes to intersperse this throughout my day. I know she means well and I know for some people those words are things to be proud of. But to me it doesn’t make sense.
The only thing rock star about me is that I can rock. In a rocking chair. And if I’m a star, it’s the low-energy fading away kind of start. I have never been in the military and while I can swim, not at al like a seal, nor a navy seal either. The only thing hard about me is how hard-headed I can be. And sure I can be an ass, squally a wise ass.
Heres the deal, yes I have lupus. And yes some days are pure torture in trying to do stuff. My hands or feet may decide not to work. Brain fog may kick in, making it hard to lecture on a topic I know well. Or getting my body out of bed, washed, dressed and to my place of work may be all the energy I have for that day. And sure at those times delivering a lecture, writing a paper or working can see like something super amazing. Because those are the days I am struggling with lupus.
But it doesn’t mean I’m anything other than a person with a chronic illness, just trying to get through life like ordinary people do. I just happen to have an extraordinarily annoying and demanding chronic illness, which frankly can be a diva at times. Nothing more.
We do this odd dance, Beloved and I. Sometimes he calls me to come, and when I make it there, he tells me he’s made a mistake about the timing because he needs to be on the road. And no this isn’t a new dance, nor is it the fading of love’s first bloom. It’s just our dance.
And sometimes I leave him standing alone after he is positive he knows exactly what I wanted. He probably wonders how he can ever figure me out, the way I wonder about him. Doubt sometimes creeps in as we both turn on our heels and go on where we need to be.
I feel like, at times, our hearts are stolen by each other and each of us leaves the other trying to figure out which foot we are both standing on. It isn’t a bad thing, it’s just our dance. And no matter how many times I believe I have figured him out, he surprises me with what he does, or doesn’t do.
But humans don’t come with instruction guides or user manuals. Instead we just kind of do our thing and see how that works with our partner, or even in finding a partner. And either way it’s okay. Some people always dance in sync, others are never doing the same moves. It doesn’t matter as long as it works for you!