The four-footed companion doesn’t understand the concept of “too much”. As in too much heat because it was beyond war mush today. Which leads me to the next too much which was too much sun. Too much sun isn’t good for me, is great for making lupus worse, but my medications have rendered me so sensitive to the sun that when I have too much I swell up and go an odd pinkish purple. Call me the human puffer fish during those moments.
Now to be fair, the four-footed one found plenty of shade, that which was cast from parked cars and such. It would be fine with me if the shade provided by parked cars covered more than my feet and ankles. With the majority of me exposed to the sun I tend to rely on sunscreen and clothing with sun protection. It also means that I tend to be covered from wrists to ankles.
So today was a day of too much because the weather forecast indicated cloudy and so I packed different clothes for this trip. And thus it took only a short period of time to reach my too much threshold.
I wasn’t always like this, I used to enjoy the sun and the heat and never grasped the concept of too much sun or heat. Sure I still wore sunblock but I als didn’t find myself relating to Dracula as much as I do these days. There simply was no such thing as too much sun or too much heat, rather they were just glorious days. I miss those days..
When I was younger, I used to feed animals bits of crackers and such. If you were a duck or a goose, chances are I would throw the cracker your way. If you were a squirrel or a chipmunk I would place the bit of cracker somewhere near me for you to come and nibble on. I might also have nuts or seed grass pieces to hold out to you if you were cute and fuzzy.
My all time favorite to feed was chipmunks, you see I loved how they would pack all the offered food into their cheeks which would get chubbier and chubbier. I guess back then I adored chubby cheeks, and to a degree I still do, just not on me. And unfortunately as part of my lupus treatment I take a steroid called prednisone which just happens to give me chubby cheeks. Well actually what it does besides giving me chubby cheeks is an incredible appetite, which results in the desire to eat all the time. Eating all the time can lead to more than chubby cheeks. And chubby cheeks on me are not cute, not like they are on chipmunks. Thankfully I do not stay on prednisone all the time!
When I was growing up we had a neighbor who spent every moment she could in the warm sunshine with as much skin exposed to the sun as possible. The minute it was warm enough she’d be sunbathing top-less for hours on end until she reached a golden color I related to well cooked French fries! 😊
I myself did not sunbathe as per say, but I also wasn’t afraid of the sun. I would acquire a decent tan from playing outside regardless of how many layers of sunscreen my mother slathered on me. I’m pretty sure I simply out-wore the sunscreen during that time, nothing deliberate and no thought of getting a tan.
After getting diagnosed with lupus and being placed on a variety of medication which made me sensitive to the sun I tend to avoid bright sunlight as if it were the plague. This means that I am starting to match Beloved glowing white color. No, actually what it means is that I never go anywhere without wearing sunscreen and having the stuff with me at all times. It also means wearing sun protective clothing with long sleeves and legs. And yes a rather large hat.
I didn’t start my lupus journey with such avoidance skills. As a matter of fact I flaunted my exposure to the sun, because what could really happen? In case you are wondering what could really happen is that my hands and feet were swollen to twice their normal size. My skin was sensitive, itchy and a blotchy reddish-purple color. And yes friends, this had to happen more than once before I clued in that the sun and I have a different relationship.
Now id like to say that since those days I’ve never had a run in with the sun again, but there have been the odd times when it starts off overcast and somehow while I out walking or whatever the sun plays peek-a-boo and I get caught not exactly prepared. Thankfully those times are very rare. Also thankfully I don’t run and hide from the sun either. We just have a different relationship now as I said before, and I still enjoy it in different ways.
I am a pro at making scrambled eggs. If you need anything mixed together, I’m your girl, provided you don’t mind how I mix it together. I mean if you insist on having a martini stirred and not shaken, the you better get on that on your own. Shaking, twitching and tremors are all my methods of mixing things up. 😉
Of course there are times when I’d rather have a steady hand, such as carrying coffee or trying to eat. Unless it is eating with chopsticks, then I don’t mind the shaking in my hands because I’m just awful using chopsticks and at least I can use my tremors as a reason why I drop more food than I pick up when using them! 😊 And I confess, when Taylor Swift’s Shake It plays I feel like she’s singing it just for me. Granted I don’t think this is the shaking she is singing about, but I will work with what I got!
I’m not sure if I developed the shaking and the tremors from my illness or the medications used to control the illness. And the fact is, even if I knew what created it, I’d still have to deal with the tremors. So as long as you don’t mind the odd slosh or flying droplet, come on over and see what’s shaking today!
Wouldn’t it be nice to have a memory like Neo from “The Matrix”? Basically you could download whatever you’d need to know and it’s there for you to grab when you need it. I’m not really sure if there is a cap to the capacities or the storage space that would be required if we were to download everything we could ever possibly need, but hey it would certainly make things like studying for exams a whole lot different.
Some people swear by online games designed to work the pathways of the brain. People claim that they have seen a huge change in their ability to recall things since working with these “games”. How much of that is psychosomatic is yet to be determined, but there is something to be said about the power of belief. If you believe by playing these games you will sharpen or hone your memory skill than surely that becomes a self-fulfilling prophecy, a subconscious shift of effort dedicated to a desired outcome if you will.
Sure I could use a bit of refreshing on some memorization skills. Heck I have probably forgotten far more than I even realize through the simple process of deciding I no longer need to know things. I can accept this. What I struggle to accept is having a memory less like Neo and more like a character from “Finding Nemo”, namely Dory! 😊
I don’t have anything against Dory, and she certainly was a good friend to Nemo, but I honestly am worried about not being able to remember anything. Rather not being able to move things from my short-term memory to my longer term memory for recall later on I should say. I guess we all fear losing memories about who we are, what we enjoy and suchlike. But when you have a condition like lupus, one that can cause cognitive issues and you tend to make your living using memory and such, it becomes scary on a whole new level.
I find myself struggling to recognize if lupus is impacting my cognitive skills or if the haze I sometimes must stumble through is a side-effect of my medication. I confess of all the things that lupus has changed in my life, this whole potential to mess with my mind and memory is what I cannot on any level accept. Okay so technically, technically it isn’t going to care whether or not I accept the changes, but you catch my drift. A well-meaning specialist who told me that as we get older we have so much going on at once that we struggle sometimes to find the right word/thought/concept in a moment of pressure, and therefore I shouldn’t worry about what is a natural state. But if I don’t worry when I’m not seeing the results I want, will I forget to worry further down the road? Will I miss the signs that should cause me to worry? Perhaps, just perhaps, Dory was on to something after all, provided you aren’t preparing for a test or such.
I’m not sure if the medical community would agree that this is a good bedtime ritual, but it’s what I’ve found works. Actually it’s just my rebellion to the medication I take. And it serves as a mean to create a soothing transition from hectic day to more sane and gentle pace. Hence hot chocolate with pills was developed and is now something I partake of regularly.
I will switch up the types of hot chocolate I’m having, and yes come the warmer weather I will make the hot chocolate, well, cold! 😉 It’s a compromise I have come to with lupus and so far it works, a bit.
Not all of my medication are in pill form though so I have rituals as well for my self-administered injections (classical music, comfortable setting and all the trappings with my injections). For my IV therapy, well you guessed it, another ritual! This one is the most complicated of all for it requires a soft blanket, a good book, a decent playlist and comfortable clothing. Oh and a chauffeur of sorts! 😉 I probably could drive, but after therapy I tend to not trust my judgment so I have a friend or loved one drive me.
But my relationship with lupus is, well to be blunt, complicated. My rituals don’t always work and frankly the rituals lupus likes to use do not always provide with a good indication of what’s to come. What? You didn’t think lupus wasn’t going to have ritual or two as well? Now and then lupus gives me red cheeks, swollen joints and such. Typically these rituals indicate lupus has gained strength and is flaring more. Sometimes lupus will mix it up and give me swollen joints, but no flare. Other times brilliant red cheeks, feeling like I’ve been run over by a truck and yet my blood work comes back that lupus is in a resting stage!
How do you have fun with your chronic illness, lupus or otherwise?
The problem with a mostly invisible illness such as lupus is that you either end up living a lie to try to be normal or you feel like you are being pulled into a strong undertow.
For me, it seems its best to appear normal to the rest of the wo world. I don’t know when I made this decision, I only know that I’ve spent a good portion Of my life ignoring fevers, pains, swelling just to appear the same as healthy people. I’ve stayed away from hospitals just to appear normal. I’ve stayed away as if to prove to myself I’m okay.
when you know you will be taking drugs like chemo, anti-rejections and steroids for your life it’s overwhelming. So I’ve streamlined meds, opting for quality rather than quantity of life. An easy decision for me, not so much for those who love me and care about me.
THe problem with having an invisible illness and trying to appear healthy and normal is that it’s almost a full-time job. Make up to hide a rash if lupus is being truly dreadful. Artfully arranged hair or hats and scarves to hide thinning hair. Clothes to hide the needle marks and what have you. Just add a huge dash of stubbornness and a heaping of pushing beyond wha gone should and you are good to go.
I know this because I’ve lived this way for a long time. It’s exhausting and yet I do it because it’s important to be seen as a person, not an illness. That’s my flawEd logic. Usually it works enough that most people don’t equate lupus with me because I don’t want to be my illness.
Lupus makes me feel weak, helpless, useless, hopeless and lost. So into what I ca to pretend and fool lupus into not knowing how it affects me. Imagine my surprise when after a day where lupus was winning this battle Beloved held my hand at the hospital and told me that I was some kind of superhero. In his eyes I wear a cape, tights and whatever else. I do battle with the evil lupus and still find time for him and other pursuits of life. He told me just watching me can be tiring, and yet I d it and still find a way to do things he wants to.
I guess my cape and tights etc. are like my illness, invisible. Hopefully I never forget that least I head out the house in my superhero outfit and no clothing! 😉