Sometimes, especially when I’ve missed the signs that tell me I’m not doing enough self-care and it comes down to a friend or loved one insisting that I stop and rest, it’s easy to get lost in the resentment or anger of having to pause. I know these people mean well and are telling me to slow down because they care about me, but it still reminds me that there is something that makes me different.
The other day was one of those moments where Beloved, after taking a looking st me insisted I go and rest. At the time I felt a bit off, nothing too bad just tired and achy with a wee fever. A smart woman would respond to these symptoms and deal with them, but I am not that woman. After a wee disagreement, I gave in to go and rest with the four-footed one.
Beloved came into the room to take my four-footed one outside and accidentally woke me up, although I wasn’t fully asleep. I was in that light state of sleep where you could go deeper into sleep or wake up. I woke up and checked what time it was as I was a wee bit confused. We had only been resting for an hour when Beloved came in.
By this point my face was proudly displaying the full butterfly rash of very active lupus. My hands and feet had become very swollen and I was not at my best. So I went back to sleep leaving the four-footed one in Beloved’s hands.
I was and am grateful to have people in my life who can insist I get proper rest before I realize I need it. I am appreciative of the fact that I have people in my life who take care of the things I can’t manage all the time. I’m blessed to have a good medical team and access to medication to help manage my lupus.
I’m grateful to wake up each morning and have some type of adventure, even if it remains only within in the house. Some days my gratitude is for simpler things, such as the couch, a stocked kitchen and not being in the hospital.
It would be easy to get lost in the negative and throw a huge week-long pity party. It would be easy to complain and keep a list of what I cannot do. But why bother with any of that when I have so much to be thankful for, so many people to appreciate and so much gratitude in my life. Yes I have a chronic illness and yes it has altered my life, but there is still much to appreciate. Lupus does not run everything in my life and I can choose how to deal with it. I choose gratitude.
I like to think I can do everything for myself and that I don’t need anyone to do anything for me. Of course none of us really can do everything in life alone. We come into this world absolutely helpless and must acquire skills and lessons to do things for ourselves.
When I was younger I fought to do things for myself, and my parents used to tell me that the only words they heard me say frequently were: “let me do it”, “I wanna do it” and “let me try”. And thus I headed out into a larger world that didn’t always let me try. Soemtimes this wasn’t a bad thing although I may not have agreed with that statement at the time.
I suspect this mildly stubborn streak deep within me is why I sometimes fail to stop and rest when I should. I also suspect it is why I’ve managed to accomplish what I have while being chronically ill. The need to prove my ability and such has come at the price of my health at times.
My medical team doesn’t agree with this lifestyle choice and have lectured, explained and demanded that I change this in myself. I have tried, but years of lying about my health and how I am is hard to change. Years of ignoring all the warning signs and pushing hard to accomplish things even if it results in a need to go to the hospital afterwards becomes second nature and therefore challenging to not do any more.
But I must make these changes before lupus decides to make more hard and permanent changes to how my body works and functions.
I woke up face to face with a pink dinosaur with a yellow horn on her nose. Peeking around just behind her was a green and purple dragon, his red tongue resting on her head.
I didn’t climb into bed with either of these two. As a matter of fact I climbed into bed alone, the four-footed blanket weight had curled up against on the bed, but not in the bed with me. I haven’t slept with any stuffed animals in a number of years. Perhaps my four-footed companion felt I need additional company. She managed to sneak them into bed while I was sleeping thanks to medication and such.
Needless to say I was a bit surprised to discover my sleeping companions. Waking up to someone new in bed who,wasn’t there when you crawled into the bed is shocking and disorienting. Waking up like that while dealing with the side effects of strong mediation to tame lupus was enough to keep me in my bed a little longer.
Of course when I got out of bed the four-footed one decided the dinosaur needed to come with us. So we moved into the comfortable chair to do some reading/resting, the three of us. The four-footed one on my lap with the dinosaur resting on both of us.
Some days you just need a little dinosaur in your life, and if you are lucky, a four-footed companion takes care of this for you.
Five or six mornings a week I go for a long walk around sunrise. The four-footed one was less than thrilled when I started this routine, but she seems to enjoy the different smells that are present this time of day. I secretly think she enjoys the fact that the birds are a bit more sluggish and therefore easier to chase at this early hour!
I enjoy the stillness of human activity while we walk. A lot of mornings the only sounds and beings we encounter comes in the form of birds, squirrels and such. People on bikes or driving cars form the last part of the scene, the portion where we are almost home. This sudden onslaught of people reminds me just how noisy humans are.
Most mornings I look forward to reaching certain points on our walk so I can take pictures of what nature generously shares with me. However some mornings I don’t look forward to these pauses the same way.
Some mornings I see each of these stopping points as a goal to reach. On these mornings I don’t measure the walk as whole, instead break it up into se stopping points and remind myself that if I really cannot do it, I only have from the stopping point to home rather than the full walk. I try to not have too many of these mornings because they mean pain, stiffness, exhaustion and all the other fun things that come with a case of flaring lupus.
On a few of these lupus mornings, I cannot even enjoy what nature provides, I can only focus on one foot in front of the other. Thankfully those morning are few and far between. Unfortunately the mornings where I can ignore my health and focus solely on nature are never as many as I wish for. But each morning is a new opportunity.
I was looking at the flowers in the garden today and realized they are “safe” flowers. They are flowers that I know do well and don’t mind if I don’t get around to watering them. They tolerate my neglect at times just as they tolerate my attention at other times. These flowers have proven over the years that they will do what flowers do regardless of my attempts to nurture them.
I enjoy the brilliant pops of color these flowers bring to my garden. I also enjoy the way the different perfumes mix and mingle as I make my way through the garden. But at the end of the day the reality is these are the same types of flowers I use each year.
I’ve wanted to add other flowers to the garden, something a little more daring. But I know that not all flowers will tolerate the area I live in, just as they wont all tolerate my moments of attention and inattention. So I have played it safe, dreamed about bringing them into my garden, but nothing more. I don’t actually want to be responsible for the death of innocent flowers and plants!
I’ve mentioned my wishes to a few people, including my specialist and each has suggested I try at least one new flower or plant. As my specialist said, “most of what medicine has discovered is through trial and error”. He suggested that I look at new plants or flowers a little like a “clinical trial”. My specialist is helpful that way!
The truth is I let my need to be in control, due to the uncontrollable nature of lupus, creep into my garden. I can, however, view my garden as a place of healing and nurturing my health. And I can use my experience with lupus to see what the next option is to try, to see what we can add to the garden with e highest possibility of success.
The four-footed one stretched her legs before curling up tightly against me as if to tell me that staying in bed was just fine with her. She tends to do this when there isn’t another human around to take over this task. Perhaps she should do it even if there is a human around because I’m more inclined to listen to her. There’s just something about her soft, warm body curled up against my tired, hurting body that works like magic.
So we stayed in bed, well her own the bed and me under the covers for a little longer than sunrise. And we missed Beloved’s phone call which came shortly after the sun had risen. We called him back later on, when we decided that staying in bed wasn’t going to make a difference. We told Beloved that very thing, no need to be in bed to rest when we could just as easily rest in chairs and such.
When we had gathered enough energy, while to be honest when I gathered up enough energy as the four-footed one always has energy to spare, we headed to a comfortable chair for a snack and a nice book to read.
A nice lazy day? Perhaps to some, but to us a day when lupus interrupts our routine of a sunrise walk, an enjoyable coffee and open to whatever adventures the day brings is more what it was.
While sitting in the garden trying to feel somewhat rested after a long, sleepless night, I managed to enjoy some of the glorious perfume from the flowers all around. A light breeze picked up the lovely scent of the neighbor’s lilacs and then when the breeze shifted I was treated to the smell from a different neighbor’s flowering shrubbery.
My four-footed companion had decided that since we were sitting in the shade with all the flowers which is isn’t supposed to walk in or chew upon, the best plan was to catch up on her missing sleep. She’s a light sleeper so at the best of times she’s up on and off throughout the night, with me up in pain and feeling unwell she got no sleep and was going to take full advantage of every opportunity she could to catch up. Given that she also wasn’t going to leave my side this meant sleeping in the garden right near my feet.
I noticed that the lawn needed cut and tidied up. I also took in how the winds had blown petals and not what into all the little crevices and corners, something that in the past I’d make quick work of with a proper sweeping. But today I could only take in the sights and make a mental note which I hoped would stick in my memory until I felt I could get around to taking care of everything.
One of my new neighbor’s commented on how it just be nice to just have a lazy day and ignore the yard work. Now we all like relaxed days once and awhile. When the weather is good and there is no schedule to keep who wants to be faced with list that never seem seems to end of chores that need completing?
I suppose I could have explained my situation to this neighbor but the truth is I didn’t feel like having a discussion about how my health had limited the amount of energy I have. I could have come out and told this person I have an invisible illness, or even said I had lupus, but I was too tired for all of that. So I simply said that now and then it’s nice to just enjoy things as nature presents them to you. Nature brings us all sorts of gifts and too often I am to our use to notice or feel I need to perfect that which nature has provided for me. I forget that not everything needs to be neat and tidy. I guess if you were to ask I’d tell you it is one of the lessons lupus has taught me and continues to remind me…take time just enjoy the sights and smell so a they are provided because nature perfects things in nature’s own way.