I’m a fan of wide porches and rocking chairs. There is no better place to read on a warm day, gently rocking and enjoying the coolness of a wide porch. Beloved is not a fan of wide porches. He is a fan of cool room so it has fans and climate control if not air conditioning. Just when it’s getting to where I’m enjoying the warmth, Beloved is getting ready to melt.
So I find myself enjoying the porch and the chair by myself by mid morning. Early mornings will find Beloved out here with me (I’m the one wrapped up) both of us enjoying a book or conversation and a nice cup of coffee. But as it gets warmer he will retreat into the house, cooking, cleaning or reading.
Today the four-footed one and I had plans to enjoy the porch the whole day long. Except wasps have come to discover the joy of our little haven so we opted to stay inside and read/rest by the open window, staying in the shade. Or so I thought.
Judging from the rash that has formed I somehow found the sun, which never happen so no the porch. So there will be no porch tomorrow for me. Instead there will be a call to my specialist,probably another adjustment of meds and a knowing look from Beloved when I see him. Oh and there will be a call tomorrow as well. That all will be to have the wasps removed before someone gets stung. Right now, after sun exposure it feels like wasps are attacking me, but I know that’s not true. It’s just lupus kicking into a higher gear, fed from the sun.
A trip to the countryside was in order, or so well-meaning friends and Beloved thought. Really I was rather content for a lazy day around the house, relaxing with a book and watching the four-footed one get up to her usual antics.
But friends had decided I needed out of the house after spending a gruelling 12 hours working on a paper the day before. Beloved fancied getting out of the house as the four-footed one needed a change of scenery. And so we all plied into the vehicle and headed to the countryside.
Everyone has their own idea of a trip to the countryside. Beloved thought he’d take the four-footed one for a short walk down by the water. He suggested I might enjoy it as well. Our friends were determined to hike along the meadows for a bit.
So my choices were an at least slow walk down to the water’s edge or a long and somewhat sped up hike through the meadows. Both required being in the sun. Not what I wanted. So I opted to travel down to the water, going slower than Beloved and the four-footed one. I allowed lupus to dictate the speed I went. For once this week I was fine travelling with lupus at the slower pace.
Because lupus knew exactly what I knew, the day wasn’t ideal for an outing in the countryside. The day was perfect for sitting and reading while Beloved pottered around the kitchen. That would all have to be put off until tomorrow, if lupus would be agreeable to that.
The four-footed one goes from zero to one hundred in a second flat. And the. She can shift back down again in the same time frame. She can cycle back and fourth throughout the day the same way you would flip on and off a switch.
Today has been no exception and it’s why there are green eggs scattered throughout the place. It’s also why a pink dinosaur is perching on the edge of my coffee table while an orange salamander is hanging ever so precariously on a shelf. There are three red birds in my kitchen and two squirrels in the hall. I found a grunting hedgehog in my bathroom and a pig with wings hanging out by the bedroom.
As for the four-footed one, she has flopped down on one of her cushions in the middle of the floor. Resting ever so innocently and peacefully while I take in the chaos. And while the notation of cleaning it up crosses my mind, I know better. Just the slightest sound, the mildest of squeaks from one of the toys is enough to flip that switch to full throttle again. Which is not ideal when it’s basically time to sleep for the night and you know it will take her an additional hour to go from full throttle to peaceful rest again.
So for now I will leave the zoo as it is and because in a few hours she will rearrange it all over again. Probably a million times before the day is done.
I’ve never been good with yo-yos. I can do the first yo, you know the downward one, but getting it up the string for the second yo? Yeah that’s not happening. Thankfully I have a little help in my life when it comes to yo-yoing. Whether I want it or not.
That little helper? Lupus. And apparently today is a lesson day. And I wasn’t really looking for a lesson today. Which is too bad because the lessons came anyway. My day started out relatively good, but by early afternoon my face was radiating a brilliant rash, I could barely find the energy to get up from my desk to the car and driving home was seriously a feat I don’t know how I managed to complete.
I get home, rest for a bit and think just maybe this won’t be too bad. So I cook some food only to discover I’m lacking the energy to eat it or do anything else. So now I’m just curled up trying not to freeze while my face burns. And I know now that lupus isn’t playing around with this lesson. Oh no, this is going to be a full lesson where no doubt I will have to prove what I have learned to get back up. But for now I shall rest and while I’m down.
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!
Over the course of my life I have heard that my attitude makes all the difference. When I used to hear this kind of stuff I’d chalk it up to my parents or some other authority figure trying to control me in a way I didn’t want to be controlled.
When I got a little older I took some courses in psychology where I was taught that you can trick yourself into believing things that aren’t actual facts yet, at least when it comes to yourself. For example if you dont feel confident but you keep telling yourself you are a confident person and pointing out the things you did accomplish with confidence, well you’d wind up believing in yourself when it comes to confidence.
So I would try these little tricks of the kind when I was feeling the effects of a flare. I’d tell myself I did have the energy for a shower and getting dressed and my follow thigh would happen even if it was a huge struggle. And I’d basically carry on with whole day by breaking it up into little bits. Sure there were some things that became too much to do, but I would wind up the day by feeling really pleased with myself and all I had accomplished. I’d even feel proud when other people marvelled at how I pushed myself on despite being in a flare because I was in charge not my illness.
Here’s the rub though, I never enjoyed any of the time I spent pushing myself so hard. In fact I barely remember most of what I did and why I had to do it at that time. I just remember it felt like I was pulling myself through thick mud and there wasn’t a helping hand in sight. The reality is there were tons of helping hands, most of them trying to pull me out of the mud to rest when I had expected them to get into the mud and push me through. Truth be told, there was no real need to push myself so hard because the only person I had to prove anything to was myself. What I should have been doing was being more compassionate towards myself, caring a bit more about my health and less about how I could push through and beyond what some of my health coworker’s were doing.
As a result, my disease would flare horribly out of control and end up doing permanent harm to myself. Which I would then shrug off as I pushed through something else. It was a pretty regular routine in my part, until recently. You see I acquired a new member of my medical team and he put it to me like this: “why should I bother to put in time and effort to keep you alive and healthy if you won’t put in the same for yourself ?” He also told me that all my accomplishments in my personal life and my work life wouldn’t mean much if I ended up stuck in a hospital.
What I had realized was this man had listened to me talk with other lupus patients about the importance of rest and self-care while I refused to do the same for me. He wondered why I disliked myself so much that I saw no value in me as a person. And he voiced all of this and much more during one of my appointments. It’s not that I dislike myself or devalue myself (although I am my own worst critic), it’s that I felt that if I could push back at lupus id win the battle. I have since tried to shoe myself the same compassion and understanding I share with others who have a chronic illness and I must say it is a huge relief to not have to do more than I feel I can do. It’s nice to accept that some days having a shower and getting dressed is a huge accomplishment and that is perfectly fine. The only thing that has changed, and it’s such a small change with such a huge impact is that I’m allowing myself to be a woman who sometimes must stay within certain limitations, but those limitations do not reflect on my impact.
We headed out for a short walk, or so I thought. My travel companion had a very different idea, or perhaps we just have a different understanding of what is a short walk. Then again it can be hard to control one’s self when one is off on a big adventure. And that, my friends, is how my travel companion sees just about every walk we take.
So every time I thought we were about to turn back, my companion would lunge ahead, tempted by the scent of something new. She didn’t heed my reminder that we would have to walk all this way back home, or how tired she was judging from her tongue flopping out of mouth now and then. Still forward we pushed as though heading home wasn’t an option, or something less than desirable at any rate.
Slowly we worked our way home walking the long way. She seemed oblivious of what I was doing, or at least happy to allowed to carry on her adventurous mode by taking the long, out-of-the-way path back home.
Upon arrival back home, an hour later, she immediately had a drink and flopped in a spot of sunlight and promptly fell asleep. The kind of sleep where you don’t even move because you are so tired. Of course that sleep lasted just long enough to get the taste for another adventure, long before I was ready for one. But then my companion doesn’t worry too much about whether or not I’m ready for another adventure so much as she works on that cute, whole body wiggle or wag thing that she does when she really wants something. And she knows that I find it irresistible and give in, because an adventure means more fun just ahead or around the corner.