Do what you love, they said. Follow your passion they said. It would all come together they assured me. And I suspect they told many people the same thing.
Thing that I love to do: reading, research and history. My passion: oh dear me that’s not easy to narrow down, but let’s say studying history and events. And turn that all into a career? Yeah not exactly the simplest of things.
So instead I work it out as best I can in fitting in as much as I can and feeding my assigns in various outlets as I can. These are things that most, if not all, people juggle. But some of us also juggle things like lupus. A life altering, at times, chronic illness.
And lupus says that it has a say in my passions and how I feed them. Lupus also has a say in my career. Not that I don’t have one, but it altered the course I was on once upon a time.
This isn’t all bad though. Lupus sent my life on a different trajectory, one I never would have considered prior being showing this path. And to one I’m still exploring and finding my way. Now I could be angry about my plans being changed, except I can’t be, not when it’s offers me other opportunities. Not easy one, but interesting ones all the same.
It’s easy to lose sight of things. It’s easy to be caught up in details and apply that tunnel vision to everything. There times this is a good thing, and then there are times that we miss out on so much because we simply didn’t allow ourselves to look further afield, check out what’s happening on the sidelines or take in the whole horizon.
If we only glance up occasionally, if we only shift our focus for the briefest of moments, it is easy to not see everything. At times what we miss might just be an entertaining moments, or every day things. Nothing major.
But now and then, every once and awhile we will encounter an experience where perhaps if we just paid a little more attention to things, we may have been there for something big. The problem is no one knows when those moments happen.
Now I am not saying I would have made a difference to the outcome, but perhaps if I had spent a little less time with my head buried in my own work I may have noticed when a colleague changed. I’m not talking hairstyles either. A group of my coworkers and I all wondered this very thing. If each one of us had taken a little more time out of our own worlds perhaps the one coworker could have felt as if he could reach out. Instead, for whatever reason, he felt the easiest way to cope was to end his own life.
If each of us shifted our focus a little, if we all stopped getting stuck in those small details we might be able to be there for someone when one of those moments comes up in their lives. And maybe, just maybe we’d be a little more connected and aware.
Just a little bit, surely that won’t hurt. I’m sure you’ve heard this before. Perhaps you’ve told yourself this very thing when it comes to food for example. I know I’ve done it. More than once.
As I’ve gotten older I’ve come to realize that sometimes a little bit does hurt. Sometimes it isn’t worth it, be it a small piece of cake or a little extra tasty adult beverage in my glass. Because that little bit, over time, adds up. Especially when you have a few little bits added together and it amounts to a large bit than you thought you had.
We are human, stuff happens. Soemtimes you make mistakes, sometimes we can’t resist that little bit. It’s okay. We just need to dust ourselves off and get back with whatever it is we were setting as limits before.
Sometimes though, the little bit is not what we wanted or asked for. It just comes into our lives and we must make a choice. Do we deal with it as best we can or do we sit in despair that this little bit is too much for us to handle?
sometimes that little bit does hurt, for a period of time. When we look back though, once we’ve dealt with that little bit extra, we realize we got through it. We usually do, it’s just that sometimes we need a reminder of how strong and resilient we are.
I still remember, clearly, when I deceived my diagnosis of lupus. The sun was out, birds were flying outside my doctor’s office and my doctor’s face bore the hallmarks of delivering unpleasant news.
He told me he was sorry to have to tell me I had lupus. He was quick to assure me it wasn’t a death sentence, but was going to change my life going forward. He also said it wouldn’t necessarily be easy, but it wouldn’t always be hard. He spelled out how the disease can affect the body and was very clear that remission could happen.
Even with my own unease at this, I realized that this wasn’t something I would face alone. It struck me then, as it does now, that there is the word “us” in lupus. Us, as in a team, a group or not alone.
There is something comforting in knowing that you never face something completely alone. Even when you think you just want to handle it all on your own.
Over the years doctors have come and gone in my life. Some have stayed, the ones who are part of my team. My lupus team. The ones who remind me of the “us” in lupus. The ones who assure me I’m not alone.
There are other people who fill in the “us” too. Friends, loved ones and support people. So each of us who have lupus need to remember there is an “us”, even in the darkest of moments. We are never alone. Because with lupus there is always an “us”. You just have to look for it!
It’s been one of those days. It started off okay, but quickly became one that was full of too much. Or maybe it isn’t so much that it was too much as it was a case of me not having enough energy for everything. Not that it really matters in the end because the results are the same.
The results can be explained as follows: pain, frustration, exhaustion and a degree of anger. And that’s just within myself. If anyone has to deal with me during one of these days, well I pretty sure their list has my results plus others!
So how does a person with lupus end up with one of these days? Sometimes this person may overestimate what s/he is capable of doing for that period of time. Sometimes what s/he thought would go a certain way ends up going a different way. And sometimes, well sometimes lupus just steps in and has a say in things.
So the person, this person, cannot always change that. But this person can try and make the best of things where possible. One these days, this person tends to retreat to be on her own and uses the time to read and rest. Or at least not have to infect other people with the miserable mood that settles upon her.
And some days, sometimes, despite it all, this person ends up with tears down her cheeks. But tears can be an emotional release which helps too.
Beloved is a man with the patience of the Saint, or close to it. He has to be in order to live with me. I can’t even tolerate my stubbornness which leads to insane delays that lead me back to square one sometimes. But he just smiles and waits while I sort it out and somehow avoids the whole I told you so bit.
He claims he really isn’t all that goods with this stuff either, just has figured out how to fake things better than some other people. Of course he also says that living with someone with a chronic illness like lupus has taught him to encourage slow time. He simply savours the moments as best he can.
Beloved has the grace of someone who is a saint. He has the grace to allow me to stubborn my way through things. He is gracious with me, generous it’s time and encouragement when t might be easier to just don’t on his own. His grace allows me to admit defeat or not even starting something.
But he isn’t, a saint that is. At least not according to the religious experts. That’s okay thought because in my eyes he is a saint, my saint. He puts the sane in sanity in this life with lupus.
I’m so tired, so very, very tired. Actually I’m exhausted, extremely exhausted and no amount of rest seems to help erase any of this tiredness. I could rest for a year and I fear I would still be tired.
This is part of my life with lupus, I know this. Just as I know resting is exceedingly important with lupus. The thing is, time is limited, there are only 24 hours in a day and what feels like a million things to do. Now I know, logically, not everything needs to get done, but emotionally I feel guilty if I don’t get everything done. I feel as if I am not pulling my own weight and leaving too much for others to do.
So I compensate, by cutting back on my resting until I can simply no longer ignore the need to rest. And the problem with this that I end up resting an entire weekend away just to be able to drag myself through my week-day obligations. You know what my weekends should consist of? Time with friends and family, not my pillow and sheets.
None of this is obviously new to me, and I’ve written about it before. But having just woken up from a nap (not something I normally do) I am reminded again that lupus, like many chronic illnesses has exhaustion as part of the issue in addition to being exhausted just dealing with the chronic illness. Please excuse me, but I’m so very tired and am going to settle down with a book and the four-footed one!