L. L is for life and laughter and love. L is for learning, limits and living. L is for lists, labs, lies and lupus.
When I first heard of lupus in conjunction with my life I was scared. I was scared that I wouldn’t be able to live my life as fully as I wanted to. Would my life be cut short by this illness? I wondered if I would ever find a way to laugh again. And I didn’t want to think about how it would affect the ability for someone to love me.
Basically, I spent a lot of time in the dark of those thoughts and questions. But lupus isn’t all darkness filled with fear and monsters of the unknown type. Life with lupus can be full of laughter and lightness although you do have to be careful about UV light as it can trigger a flare.
During my journey with lupus I have learned how handy lists are. Lists of things to do, medications I take and people to contact for example. These lists have been time and life savers along the way. And some of these lists have been on lab requisitions. You know the kind your doctor orders?
Life with lupus means lots of lab requisitions and visits. Just to get a diagnosis can require multiple labs with oodles of blood draws and then depending upon your medication and such you may need to do more regular labs.
Life with lupus is also a life with lies. Lies I tell myself, like it’s nothing too serious, or I can beat this fatigue to the lies I tell other people so t hey don’t worry. I tell people I’m fine when on the inside I feel like I am crumbling into dust while being so exhausted I don’t really feel like I want to use energy to draw another breath. Thankfully those moments are not permanent.
If you are wondering, yes life with lupus is a bit more complicated than I’d like, but it is full of laughter and lightness, love and learning. I’ve learned how strong I am, when to push and when to rest. I’ve learned far more about biology than I thought I would and I have also learned that sometimes it just doesn’t matter how other people feel about my situation.
Have you ever had something that you know is no longer any good or has become worn out, but you can’t just part with it? I have a pair of shoes that I like. I’ve never been able to find a pair close to them that would let me replace them so I have been careful with them.
While walking today in the rain my left foot suddenly got wet. There appears to be a hole, or I may have just worn through the sole of the shoe and now I have a wet foot. And no real reason to keep the shoes any longer. The cost to repair them, if they can be repaired, is going to be worth more than the shoes.
The hole did not just suddenly appear despite what I would like to think. It has been slowly creeping its way to a catastrophic failure resulting in me being left with a soggy foot. And I have chosen to ignore the slow building failures because, well, they are a special pair of shoes.
Part of me wants to blame the shoes for letting me down, but they haven’t. They lasted a long time, took me on some amazing adventures and it’s just their time to move into a different being. I knew the day was coming, but still I let things linger to the point of a painful goodbye. And I let things linger into a slow decline because that seemed easier than finding another pair of shoes to replace them.
Our relationships are like that sometimes aren’t they? We let them linger long past their best by date simply because it’s easier than saying goodbye. We don’t consider if the other person would be better off moving on or not at times. Because it’s a comfortable fit even if it’s grown from one thing to something completely different. In those cases you aren’t left with a soggy foot, just a broken heart and possibly wet cheeks from tears. Because goodbyes are not easy, whether it’s a loved one leaving or a trusted shoe finally reaching the point of no return.
I read a book about a person who did a solo trip to the Antarctic and all I could think of is why. Why would you put yourself through that kind of risk? Why did this idea even pop into the person’s head in the first place? And why didn’t I ever push myself like that before?
On one hand I can not imagine wanting to put myself so out there that if something went really wrong there was little to no way to get help. But on the other hand, what a marvelous way to not only push yourself, but really get to know your own weakness and strengths (obviously before you start out on the journey and then once on the journey simply grow them out).
There is something to be said about self-sufficiency and knowing you have pushed yourself as hard as you can. There is also something to be said about feeling you are in a much larger space, wide open and for the most part untouched by millions of people. (I should mention that again, the cold and I are not good friends, so this might not be the ideal trek for me.)
I can honestly say I’ve never put myself that far out on the line. I’ve never had my entire life and death in my hand and having to trust in myself to that degree. I’ve also never pushed myself that hard or under those types of conditions. Would I be a different person if I had? Maybe.
But a friend reminded me that there are days when I struggle to get up and moving around. There are days when lupus seems to be my version of climbing a mountain or going to the Antarctic all on my own because in some ways lupus is very much your own individual challenge. And so maybe, in my own small way, I have pushed myself somewhat that hard. Just not exposed to the cold and the frostbite or the total loneliness. Or the life and death situations etc. Besides, I’m not the kind of girl who can go that long without a decent cup of coffee, running hot water and indoor plumbing so yeah that’s why I haven’t pushed myself that hard!
Someone once asked me why I tend to be okay with Beloved and I being apart for a period of time, back together and then apart again. I suspect this person was questioning how I could trust that things would remain the same if he was gone for a period of time. Perhaps it was that this person could not imagine being alone for any period of time.
Part of it is that I need my own space, so yes sometimes an ocean, some fields and rocks tend to come between us. It isn’t that I don’t miss him, or that I require exactly that much space, but it works for the two of us.
Part of it is that we each had our own lives prior to us meeting and becoming a couple. The question of who was going to give up his or her life in one country was quickly answered when we both realized that neither of us would want to give up our way of life and could not ethically ask the other person to do what we ourselves would not be wanting or able to do.
Part of it is that it just works for us. It isn’t always easy. And yes we do miss some key events in each others lives, but for us, it still works. Until it doesn’t and then one of us hops on a plane or two and head to where the other person is working full steam ahead. Whoever travels to the other is responsible for helping that person slow it down enough that we can have time together. But sure, when I’m there impossible schemes, improbable ideas enter my head and there is no way to stop my mind from racing around those ideas until I look at what he is doing and realize I need to slow things down so he too can slow down.
UIf you are fortunate you will never have one of those “can’t happen to me” moments in your life. Or perhaps your moment will be for something small or trivial. Some of us though will go through one of those moments in a more painful way.
I’ve had a few of those moments in my life. The first major one was realizing that my chronic illness that cannot be cured. The second moment was realizing lupus can limit my dreams, forcing me to rethink my hopes and dreams from what I wanted before.
The next massive one that shook me was when Beloved was sick, but it couldn’t be cancer. Until it was. This was followed by realizing he too wouldn’t be able to walk away unscathed from cancer. It cost him a bit of a lung. But thankfully that is all.
Last night I had another one of those moments, sort of. Thankfully it turned out to be short-lived to due to a mistake. But for a moment I was reminded yet again that IT can happen to me, to any of us. At any time.
Frequently we cannot stop those moments although we will sit and second guess it all after the fact. The best we can do is realize that it can happen to us, it may not have happened to us this time however it has happened to someone. We can respond with compassion and support and take a moment to appreciate what we have.
Today I ran out of battery power. Well not me as per say but my devices. Perhaps it’s a case of me failing to manage my device power levels appropriately. I can accept this is a failing of mine. Especially since my phone, tablet and wearing technology all were at less than 20% battery power at the same time.
Now having an energy crisis is not a small thing these days. Life is basically run off of and held within my devices, or so it seems. Thus I did, upon getting the low battery warning, rush to find outlets, Chargers and the likes. I was a girl on a mission to get that all taken care of.
Once my devices were all nicely tucked into power outlets I wondered what the real Rush was about. Would the world end if I let my phone die for a bit? Probably not. Would disaster for all mankind arrive if my tablet went dark? Well it might on account of the work I was doing was off my tablet. And in all fairness my tablet is what warned me it was running out of power.
I’ve let these things creep into my life to the point of dictating my responses which isn’t right. But here I am charging them and keeping an eye on them because they seem to control me or have control over me.
Deadlines. We all have them. How we deal with them is up to each of us. Some of us hide from them, pretending they don’t exist, however they just loom over our heads until they are right above us, pressing down with incredible weight. Some of us get with right on whatever it is so we more than meet the deadline. We end up well ahead of the game. In those cases the deadline seems to have little weight on us.
Now life might be interesting without deadlines, but what would we really get done if we didn’t have to get it done by a specific time? How many things would just pile up and never get looked at or dealt with? So yes we need them, perhaps not too many of them and maybe, just maybe we need to figure out how to manage them a little better as far as assigning them or doing the work to get them met.
Speaking of deadlines, I’m pretty sure I have something that needs to be done, but I can’t remember what it is was because I just pushed into the later pile. And today my later pile is rather large!