I’m not a huge list person. I have an informal list of things I’m working on or doing, but it’s a loose list. It isn’t written down, just what’s in my head, but if it were to be written down it would be in pencil with almost no pressure put on it. And the paper it would be written on would be a tiny scrap of something, you know the kind that’s just perfect for a piece of chewed gum to fit into.
This morning I woke up and decided I had maybe three things I would consider doing. I got on with my morning routine and then suddenly I was all out of energy. And I felt, well, very unwell. So I got ride of my list and opted to get done what absolutely needed doing. accepting that the rest could wait. For another day. Or later on if for some reason lupus decided to cooperate. (Wishful thinking for the most part.)
Now in the past, I would have considered this all to be a failure. Failure to get the few things accomplished I had planned on getting accomplished. Settling to get done the one thing I absolutely had to get done would, in the past be a sign of giving in, almost a weakness. But that was the past.
I’ve learned that if I don’t heed these warnings there will be many more days where things just won’t be gotten to for a long time. Some things will have to be forgotten at this rate. And at that point the failures are bigger. Big enough to result in barely getting out of bed or managing to take care of myself. Big enough to result in unwanted, but exceedingly necessary trips to the hospital. So yeah that kind of failure.
So today when that sudden exhaustion and other feelings hit me, I just did what needed doing and curled up with the four-footed one. We watched mindless shows and napped. We did not worry about what we failed to get done. Instead we celebrated the success of holding lupus to a specific line. That line is minimal interruption in my life. One day is minimal versus a week or so in the hospital. And this, my friends, is why I don’t worry too much about my t0-do lists.
There was no fate worse than being the person last picked on a team when I was in elementary school. Death, in fact, would be better than being the last person picked. If you happened to be competitive in any way, but not very good at the activity being set up, you would want to ensure not only that you weren’t the last person picked, but that so-and-so was picked after you. Ideally there would be a few people who’d be picked after you.
If you weren’t into competition and/or really did not care, well then being picked last was completely okay. It simply did not mater to you.
These days it isn’t so much being picked last that can be a fate worse than death. At least not in my world. Nope, that special honor now goes to how long I’m stuck waiting on doctors or other medical professionals. There is nothing worse to be stuck in a waiting room well past your scheduled appointment only to be taken into another room to have to wait even longer. I understand that doctors and medical professionals are busy. I know there are other people who need help as well. But please don’t make me be the person who is waiting the longest. (Okay so I am a bit competitive!)
What I do when I arrive for my appointment is see how many people are in the waiting room. I look the group over and make a silly decision about how I need to be taken in before some of these people and get back out before they are released. It isn’t like I have any control over these things. Yet still, I cannot be the last person.
Of course I am relived when I get called before some of the other folks. But this is temporary because then it becomes a question of how long do I spend waiting to see the person I have the appointment with. And the longer I wait, the more it becomes the same as being that last person picked when I was a child.
There have been times I’ve wondered if they have forgotten about me, and just when I’m getting ready to leave the room, in walks the person I have my appointment with. Of course there are apologies and explanations and somehow I can’t help but wonder why don’t I get that attention. Which is silly because I do get the same attention and if I need extra time I am able to get that as well.
Even though I know all of this, please, don’t leave me in the room too long. And please don’t put all those other people before me!
I was recently asked what made me go to work every day. There are a lot of simple answers to this question. According to Maslow’s hierarchy of needs, a steady pay is definitely one of the reasons. I’m not independently wealthy so I need a means to pay the bills. But of course I could go elsewhere and get some type of pay so clearly that isn’t the only answer to the question.
Another simple answer is that I love what I do. I know that sounds a bit hokey and fluffy, but it’s true. Now I can’t say that I love it enough that there aren’t moments where it doesn’t feel like work, but on the whole I love what I do. The fact I get paid to do what I love is a bonus. A huge bonus.
However when I look at this question more deeply, the fact is there is far more to it than just a simple answer. Dr. Maneesha Pednekar said it best when she was talking about ensuring a company takes care of it’s employees the same way it does it’s customers. She said:
“Employee experience is as important as Customer experience. Crafting memorable moments for Employees to remember for a life time. Somethings will never go out of fashion. The human connection, trust, empathy, hope, optimism and the opportunity to inspire and be inspired!”
My current work, place of work and people I work with/for manage to fill this and so much more. This is to some extent what helps keeps lupus at bay.
Me and my shadow, well in this case lupus is my shadow, go everywhere together. It isn’t that I’m afraid to go alone or for that matter be by myself. But I can’t say the same thing about lupus. Lupus, it would seem, goes through phases of being actively involved in whatever I’m doing or resting.
Of course adding the four-footed one to that equation means that it is very rare indeed when I find myself alone these days. Not that I’m complaining about the four-footed one in my life, heck there are days I wish I could steal her energy. Lupus on the other hand seems to have no qualms about stealing my energy. Frankly I should learn that trick from lupus, but would I want to do that to the four-footed one?
And the problem with all of this is that well for starters my bed is getting crowded. Crowded with my body, the four-footed one claiming a great deal of space for herself and lupus. Lupus just sort of slips in and takes over whatever space it can find.
On top of my bed being overly crowded the house seems to be shrinking. Now this is partially due to the four-footed one being overly active, so she now appears to be here, there and everywhere at basically the same time. (She’s done grown now.) Lupus on the other hand seems to be growing incredibly huge without any food (well other than my energy and such) at times. Sure sometimes when lupus is hiding the house goes back to it’s normal size, but when lupus is more active I’m afraid it will burst out of the house and up through the roof!
These past few days as the four-footed one and I have gone for our walks, lupus has tagged along. Not right besides us because there simply isn’t enough room on the sidewalk for all three of us, but just behind us. I have been tempted to outrun lupus, but I know deep down that I can’t outrun lupus. I’m fortunate if I keep it walking way behind me and give it the slip when I cut across a corner and duck behind a tree.
I fully realize that lupus will always be a partner in my life, wanted or not, but I’d like to lose my shadow a little more frequently if I could.
There is busy and then there is too busy. Life has a mixture of these moments, and sometimes it seems as though they conspire to get the best of me. I’ve been busy for the past little while. I mean busy enough that time is slipping by without me noticing it as much. I’ve been busy enough to sometimes have the four-footed one insist I take a break and play with her (which somehow than makes me need to rush to catch up to the time I gave up to play with the four-footed one).
Today the current of busy shifted on me and I ended up even more busy than even I could have anticipated. I feel as though I do not have enough time to get things done that I need to get done. Let’s not talk about the stuff I want to get done. Part of this shifting in the current of busy has to do with this little word. It is very little, in fact it is only two letters. The word: No.
You see I have an odd love/hate relationship with the world No and while I can say it, when someone approaches me who requires help or is asking me to spend a bit more time with them, No isn’t always as easy. And there is the problem, because by saying anything other than No to some people means they will be expecting their request to be fulfilled. Even worse, if I have a relationship with these people, the world No is harder still to give voice to.
Sure I can say things like “I”m sorry, I just don’t have the capacity right now” or “saying yes to this request means I’d have to say no to something I’ve already committed to doing” and so on. Despite having the words, the circumstances or people themselves drive these words away from me. And I end up in a too busy mode. At too busy I lose all track of time. I stop resting. The four-footed one misses out on play time and a million other things get pushed aside. Some of those millions of other things happen to be closely related to my health issues.
So from now on I can no longer allow myself to be too busy. Because lupus adores me when I’m too busy. Lupus draws strength and energy from me being too busy because that means I’m not taking care of myself. I am inviting lupus to do it’s best or is that worst while I take a vacation of sorts. And that must stop…just as soon as I complete this project I agreed to doing.
There is no handbook that you are given when you get a diagnosis of a chronic illness. None. You might wish there was, but I promise you a doctor doesn’t have one to give you. Sure, a doctor may hand you pamphlets and such, but it isn’t a handbook.
There is no Welcome to…. or Living With…. I mean those titles might exist, but they aren’t handbooks offered by medical practitioners. And maybe, just maybe that’s a good thing. Not because lack of knowledge is a good thing, but because for some people that first diagnosis can be overwhelming. And for some of us, when we are overwhelmed we can barely remember our names, let alone remember to grab everything with us etc.
When it comes to an illness like lupus, the reality is that there is no set formula or path that the illness takes. How it affects one person is not how it will affect another. And if I were given a book that basically spelled out how the illness should behave and then it doesn’t behave that way, I’d probably be mad. And I’d wonder if I really had lupus or if it was something else that had been misdiagnosed.
Or what if your illness starts doing things that aren’t in your hand book? Then what happens? So no my dear friends, there aren’t handbooks for this, but there are books in general about the illness. And wonderful support groups.
It’s been a rough few days, heck a rough few weeks if I’m honest about it. It isn’t all lupus though, despite what you may think. Although I’m not going to downplay the role lupus has played in making things more rough than they should be. But I haven’t been much of a help to myself either because I bit off a bit more than I could possibly chew and instead of just spitting it out and breaking into smaller pieces, I opted to continue to try to chew. Not smart.
So when I phoned my specialist and got his assistant on the line I was in a pretty bad place pain wise and ability wise. Now I should say this up front, I love this assistant. She is a no-nonsense, straight talking, tell it like it is kind of woman, with just the right dash of empathy. Normally when I phone and I’m as far down the path of pain and mobility issues that I was she offers up suggestions such as ice packs or heating pads; oatmeal baths or episome salt baths to try and get things down to a more manageable level. But not this time.
This time she got on the phone and said “have you tried shutting down, unplugging everything, plugging it back in and starting it up again? You should do that five times at least!” and then she laughed. She said she always wanted to say that to someone and never had the chance. And honestly with lupus, I wish it were as easy and shutting my body down, unplugging and then re-plugging stuff back in so that when I start back up it’s all good. But lupus isn’t that simple. I told her if I could do that or jiggle the handle it would be ideal. But it wasn’t, so could I please get in to see the doctor. After a bit more of a laugh she made my appointment and told me she’d jiggle my hand when I came in for the appointment so that the blood would be easier to draw. True to her word, she did jiggle my hand a bit; it didn’t affect the speed at which my blood flowed though.