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.
I was going to stay in bed for a bit today. I was going to take it easy, do some light work on the computer and rest basically. I felt good about this plan and the four-footed one was on board.
Within an hour of getting up my plans were derailed. Because in all of my planning for a relaxed day I forgot that I had to go shopping. Well not shopping so much as picking up an already made purchase. For someone’s Christmas present.
So quick change of plans and off we were to the store to pick up the aforementioned purchase. It shouldn’t have been the disaster that it was. A quick trip and then back home to rest, just as planned and approved by my doctor.
Three hours after heading off to the store I had finally managed to obtain said item. It was an exhausting drive back home and instead of doing any work on the computer I did something I rarely do. I napped.
I napped for a couple of hours, woke up feeling just as exhausted as I did before my nap and reminded myself, for e coming weeks this could be the norm for me.
Lupus and stress do not get along. Christmas shopping, preparation and all of the rest of the stuff that goes with it are somewhat stressful for me. Mostly because I try to find the ideal gifts for people. Make the cookies and such that please everyone and so on. The thing is, I just don’t have the energy for everything that I dream of doing. And today was a reminder that I need to reconsider how I do things or the expectations I set up for myself to ensure everyone has a wonderful holiday.
Today was a have your cake and eat day for me. Not so much because I was desiring cake as much as it was a case of there was cake in the house and it needed to be eaten. Plus the cake required no cooking or assembly and I really wasn’t up to spending too much time doing much of anything.
So I had cake. Cake for breakfast, an IV for lunch and cake for snack later on. Now I pretty sure my specialists would not approve. Heck four out of five doctors would not approve. And on most day I wouldn’t approve of this either. But honestly the cake needed to be eaten and I want in the shape to do much of anything. Besides the cake had flour and eggs which means I got some grains and healthy eggs. If you ignore the downside of butter cream made with butter, well I got dairy in as well. (Okay that’s al a stretch, but hey.) Besides it isn’t like I had huge pieces of the stuff. There wasn’t that much to eat. But more than I wanted to consume all at one time.
Not that I really need to justify my cake eating to anyone, I’m an adult after all. Listen, lupus isn’t a piece of cake, but sometimes all you can manage is a slice of cake because preparing anything else is too much.
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!
A friend told me she has several wedding invitations already for late spring and summer. Another friend shared that she has a few requests for cabin/lake time as well as beach time. Beloved also has received invitations for various outings for spring and summer, and like most people he won’t be able to attend all of them so he will have to make choices.
There was a time in my life when I had all these invites as well, however having to miss so many things due to health issues and such the invitations slowly die out. I don’t blame people for this, I mean at some point you get tired of a certain someone cancelling on you last-minute. No matter how understanding you are, it gets tiresome. I understand that.
The thing is, being the person who is always cancelling at the last-minute I also find these last-minute cancellations to be tiring. I’m tired of not knowing until the very last moment if I will be able to attend a gathering. Sometimes I lose the energy while I’m getting ready, such as doing my hair or getting dressed. Other times I wake up and just know I can’t make it.
But as I said, cancelling gets tiring to, as does the whole sense of being isolated. So often times I will push myself to go out and deal with the aftermath as needed. Unfortunately that has meant being short-tempered, snarky and such with friends and loved ones; pain never brings out the best of me.
On one hand it would be better to just stay away from anything that requires an invitation and such for both my sanity and those I care about. On the other hand no one wants to be ignored. Except when there are a million wedding and party invitations during the beautiful days of spring and summer!
Today I learned the art of chasing bunnies. And squirrels. As well as the ancient practice of leaping at birds and rolling around in crunchy leaves. I mastered none of these, but I certainly enjoyed watching the serious need to enjoy every moment.
If course the four-footed one also tried to teach me eating on the run, but I just couldn’t get into picking up disgusting, questionable items off the ground and chewing the, to see if they were worth swallowing or needed to be spat out. My idea of eating on the run is more of the drive-thru or eating what I have while I am walking. Provided its human food. Unspoilt human food. On account of the fact that I’m picky that way!
And when I suddenly felt I couldn’t go any further today, my four-footed one curled up against me, gently urging me home where she insisted we both rest. She decided to flop down on my feet, knowing that I’d hate to disturb her if she was resting. And if the feet don’t move, the person doesn’t move. And if the person doesn’t move, the person can rest. And hopefully once the person has rested enough from lupus, then the person will help chase bunnies instead of acting like an anchor. And a well rested person might also understand the way the squirrels tease and realize it’s important to chase them too.
A rested person will probably jump with you when the birds come around and maybe, just maybe that person will also roll in the leaves with you. And to be honest, it’s best if that person is never rested enough to join you on eating on the run!
I was run over by a truck today. A massive gravel truck with an extra full load. I believe it ran over me and then backed over me for good measure. After that I lost count of how many vehicles used me as an annoying speed bump, barely slowing down as the ran over me too
I always thought, or rather Bugs Bunny cartoons taught me to expect, that when you get run over you’d simply become flat like a pancake. And of course through the luck of animation you’d be a bit like an accordion, all folded up. But basically you’d come out okay in the end. At least that’s how Wylie E Coyote was impacted.
But my friends that’s not at all what this is like. This is unending pain, unyielding exhaustion and loss of energy. Before you become outraged and demand to know the trucking company who left me a boneless, mangled mess, settle down. You see the trucking company was hired by lupus.
Lupus paid the driver to take an extra heavy load and hit me at high speed. Probably paid out a bonus for he backing the truck back up over me before taking off. The added cars that used me as a speed bump were just an added, unpaid bonus.
I think I may have used up my allotment of energy with this post to be honest. But this is temporary, this pain and exhaustion. I may not be like an accordion, but I’m like a runner who finds her second wind when it seems she can’t run another step. You see lupus and I are running a marathon. And while I may not always be ahead, it is a long race and I will come out winning this one.