Yesterday was not an awesome day. It wasn’t even an okay day. Not as far as lupus goes. Or rather for lupus itself it probably was an amazing day. For me, I can’t say the same. You see it has been unseasonable hot here, as it is in many places. Hot and sunny. With really poor air quality due to forest fires. And of course yesterday would be the day I would end up trapped in full sun.
When you first get diagnosed with lupus, you are warned about sun exposure. And if you are at all like me, you buy sunscreen by the gallon and spend half your time slapping the stuff on. You buy hats and long-sleeved shirts that still allow you to not roast in them while out in the sun. And you scope out places for shade. You take precautions that have you watching the sun’s movements and shadows and all that. But sometimes stuff happens. Like a car accident up the roadway from you.
And when that something happens, like yesterday’s car accident, you sometimes find despite all your planning and precautions, you are exposed to the sun. For long periods of time. Like an hour. While the police run an investigation. And you happen to have lupus. Which is an invisible illness and so the police don’t take your request for shade and a cool place seriously while you watch them escort some elderly people to a different place.
When these things happen, you pay dearly for it. Yesterday’s exposure means days of not being able to do anything much as I recover from an intense flare. So while you struggle through your flare, you wonder about acquiring super powers to find shade or leaping huge spaces in a single bound. If you happen to know where I can acquire those skills, I’d be willing to learn them. In the meantime I managed to provide a little reminder to the local law enforcement folks that not all disabilities or illnesses are visible. Some times they have to trust us when we tell them we need something a bit different, such as shade. I’m sure my lovely, red rash, swollen fingers and struggling movements was eye-opening to them. The fact is, all of those things were brought to a head because of their insistence that I stay where I was as there was “nothing wrong” with me.
Beloved phoned me to say he was not going to be able to keep a commitment he had made weeks earlier. He wondered if I could phone his friend and let him know that the plans had changed and he was very sorry for having to bail on his friend. He said there was no way he’d be able to meet up with this friend and be where his job insisted he be at the same time.
After finding out more about the change in his work schedule, I made the phone call he requested. His friend was disappointed, but also understanding. Beloved typically finds a way to accommodate everything and everyone. The fact he couldn’t was no doubt disappointing to Beloved as well as his friend. His friend told me that he’d get in touch with Beloved later on and reschedule for a time that worked for both of them. I knew Beloved would appreciate that.
Heaven knows I’ve been there myself, torn between needing to do something for someone else such as an employer, and wanting to touch with friends or family members. Sometimes you can juggle these things and make it all work out, but other times you just don’t have a choice. If you are fortunate, like in Beloved’s case, and have a friend who understands things, it all works out. But sometimes you have done this repeatedly and/or it’s hard to mesh schedules and things don’t work out as planned.
The truth is, I admire Beloved for being able to make things work most of the time. I wish I could do that. But lupus is a demanding boss and life partner. Lupus doesn’t care what I may have planned or scheduled. Lupus wants what lupus wants when it wants it. And that’s kind of how the game goes. Which means I cancel on people far more frequently than most folks will. I bail when others wouldn’t and it makes some people think I’m flaky. I bail frequently. And not with a great deal of notice in advance. (Beloved gave his friend over a week’s notice, sometimes I’m lucky to give someone a couple of hours notice.) But the people who are dear friends, the people who love me, they get that sometimes lupus wins and I have to cancel plans.
I hate having to admit defeat. It’s right up there with having to ask for help. These are things I struggle with. The problem with admitting defeat is that it feels like I’m saying I’m a failure. Notice that it doesn’t come across as me saying I wasn’t successful at something I attempted to do. Nope, instead I tumble straight into the good old mode of considering myself a failure. And asking for help means there is something wrong with me, like I’m not able to figure out what I should be able to figure out on my own.
Now the truth is, if someone came to me and admitted defeat in learning a new skill, I would not think any less of that person. Perhaps the person just wasn’t ready to learn the skill. Or maybe there are other learning obstacles in the person’s path.
Land the truth is if someone comes to me for help, I don’t feel any less about them. They just need some assistance and I happen to be in a position to help them out. Life is about give and take, ups and downs.
Now I will admit prior to lupus I was hard on myself. Since having it, I push myself harder, expect more and never let myself off the hook. Which of course is absolutely stupid given these are stressful things. And given that lupus feeds off of stress it’s extra stupid. So I’ve made an effort to start asking for help before things get to a place of defeat. Yes I know initially this will bring me incredible stress, but in the long run, it should be good for me.
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.