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.
There is something magical about eating with your hands. It’s intuitive and natural. Unless you are typing to eat things like cereal and milk or applesauce. It’s hard to eat those things with your fingers. Not impossible though. Toddlers prove this all time and time again.
A friend stopped by with some ethnic food today. We were supposed to go out together for this meal, however lupus kind of got in the way. Around ten this morning I hit the wall that anyone with lupus knows all too well. If you don’t have lupus you may not know this wall. You can be feeling somewhat okay and suddenly be hit with fatigue that is soul crushing. Or perhaps its bone crunching pain. Maybe a combination of both or something else.
This morning I was hit with “healthy” red cheeks aka the butterfly rash and fatigue beyond belief. Thankfully I was home and could just crash, which I did. When my friend stopped by, Beloved was home and it was he who collected the food from my friend. My friend assured him the best way to eat the food and get the full experience was to it the food with your hands, not utensils. So we tried that.
Sadly my friend forgot that some of the food was meant to be eaten with a type of bread, which wasn’t part of what she brought. And so we tried to eat it with our fingers, which made us appreciate how toddlers will try everything with their fingers first. Because fingers feel natural. Until you reach a certain age, where suddenly eating without utensils seems, well, unusual. Once you get over that though, its magical and a way to let your inner child out. Consider it a whole new way to get into your food!
Now im just going to hose off…