Some nights, long after Beloved and the four-footed one are fast asleep, I grab a light blanket and head to the balcony to sit in the inky darkness that seems to embrace me. It is like being welcomed by an old friend.
As dark as the night sky here gets, it is still never without light. The sky is a study of deep purples, swirling bluish greys, and flashings of shimmering light. I can get lost in watching the ever-changing sky, which is good because when I’ve come to the balcony, it is because I’m unable to sleep due to pain.
When nothing else can offer me peace, nature quietly steps in and continues to be as always. Each time I find myself here on this balcony, I try to tell myself to enjoy all that nature offers each day, not just when I am struggling with pain.
I’ve been here many times, not just on this balcony, but at a place where I remind myself to stop and enjoy what is on offer when presented to me. I earnestly mean to do this, and somehow everyday things, the mundane stuff, gets in the way. Perhaps if I change it so that I make a point of seeing one thing nature offers me each day, I will get closer to my goal.
A strange thing happened today. The four-footed one got me up at the usual 2:30 start to the morning. Once she took care of her needs, she didn’t demand food. She wanted to go back to bed, so we did. It gave me an hour of resting in bed, which my sore joints were thrilled to get.
During the hour where I was awake and resting, something strange happened. The normal morning stiffness went to from being normal to full blown flare issues. How I had easily gotten out of bed earlier seemed like a dream. I struggled just to roll onto my side to prop myself up.
The look on Beloved’s face told me all I needed to know. He could see the rash and moved into lupus flare mode. This means he gets my meds, the glass of water, my phone, and takes the four-footed one to be fed. We go through my appointments, contacting anyone I had plans with.
We open up the tracking program I guess to record my flare. And then he gets on with taking care of the house work, whatever the four-footed one needs and wants, sorts out meals, and provides me with support and rest reminders. I know I am fortunate to have a partner who steps in so easily and gracefully, eliminating much of the guilt that comes with being unable to do so much. I know it’s childish to want to claim it is unfair to have lupus and how it impacts my life. Still a churlish side of me thinks about saying it. But I don’t because Beloved certainly doesn’t have to do any of what he does. Yet he does it unquestioningly. The only thing he demands in return is that I focus on doing what I can to get through this flare rather than trying to do my normal routine.
It may be a few days before I wake up back to my usual self, regardless I am grateful for this and the life I have.
A funny thing happens when you have an illness like lupus. It keeps life, well, interesting. It is interesting for the person who has the illness, it it is equally interesting for anyone else in your life. Beloved always wanted to be a doctor, of a type. He got a PhD and had a lovely life doing what he wanted, traveling as he wished.
Then he met me. Suddenly his life became, well, complicated. Travelling when he wanted was out of the question because sometimes lupus doesn’t let you just travel. So, if he wanted me to join him, it would become a bit more of a scheduling and wait and see deal.
He also ended up learning a lot of stuff from a medical standpoint. He jokes that he has become an unofficial doctor with all he’s learned medically. Heck, he has come to accessorize the house around an IV pole and such. He’s learned that some of my medication must be kept cool. He’s gotten ideal at reorganizing the refrigerator, dealing with needles and such.
He’s adapted to the me who can do things one moment and the next be left unable to do half of what I could before. He’s adjusted to the whole ‘the sun is trying to kill me’ approach I have to sunlight. He’s had to adjust to the girl he knew suddenly not looking like the girl he knew. He’s adapted to my ups and downs with doing things, for pain, and all the rest.
So if he wanted interesting, he got that in spades with me!
There are days I can’t win for losing. I don’t know what I’m supposed to do during these moments, but I’m pretty sure trying to push through isn’t the answer.
There are days that I wonder why I even try to pretend everything is right. The only person I’m trying to fool is myself. Everyone who knows me can see that I’m not winning this particular round with lupus.
Beloved will cancel outings and get-togethers. He will deal with the four-footed one, the house, and all the million little things that need to be done. He makes the phone calls I meant to do. He brings trays of food to me while I am trying to pretend that it’s easy to get out of bed or have a shower.
My friends and loved ones tell me to rest. They understand and support me healing while trying to reassure me that there is always another day. And in the back of my mind, I wonder what will happen if there isn’t another day. It is then, in those moments that I know I can’t carry on pretending that I can manage this day the same.
I declare it a lupus shadow day and let the plans I made become shattered into a beautiful disaster on the floor. And the minute I recognize the beauty in that disaster, I realize that I can win this, that I am coming out of the shadows and getting back into life as it was.
It is easy, so utterly easy, to take things for granted when you don’t feel well. You take for granted the medical people who work to get you well again. You take for granted the people who run the labs and fill the prescriptions. Instead you just focus on getting well and don’t give much of a thought to how it is possible.
If not for a large group of amazing people, there is no way I would have the life I currently have. To be blunt, I cannot say for sure I would even be alive today without these amazing and talented people. And I remind myself every day how much they do for me and all the other patients.
It is just as easy to forget about those amazing people when you feel well. Let’s face it, when you have a chronic illness, it is deligtful to feel well enough to just be like everyone else. Again there is no way for me to feel that way without an incredible team behind me. A team that is a step ahead at times, or at least in sync with me. And these people plan how to best help me, in spite of myself.
I don’t take them for granted because without them, I’m not here. Thank you seems insufficient for what they do, mostly bcause what they do is priceless to me.
The dishes are being air dried because I have a knee issue. I have a knee issue because I have lupus. I was told to stay off my leg as much as possible. I had been on my leg enough already earlier in the day. Beloved isn’t drying the dishes either. He is exhausted as well. You see with me limited on what I can do with my knee and being on crutches, he has had to do more of the work.
I guess you could say my reason for not doing the drying is because I have lupus. His reason is because he lives with someone who has lupus. He will tell you that living with someone such as myself is probably as exhausting as lupus can be. He may be right since I’m too stubborn for my own good and let things go before I get help. This typically results in a longer healing period with him picking up the slack.
Not everyone with lupus is like me. Some people are very rational and pay better attention to their cues. Regardless, there are down times for most lupus patients. When we are down, it is up to others in our lives to pick up the slack and no doubt worry about us too. Just considering it all can be exhausting and overwhelming.
I may struggle wth how my illness effects me day by day, but Beloved has his own struggles with living with someone with lupus. Who knew it had a secondary impact like this? Probably anyone who is part of these teams.
Walk it off, he suggested with a lopsided grin. I wondered where he went to medical school. I came in with a stiff and swollen knee. I couldn’t walk on it or bend it, which is why I was at the doctor’s office. He had noted that there was substantial swelling in the joint and when he tried to manipulate it something “caught”.
And his advice was to walk it off. Granted he handed me crutches at the same time. When I gave him a side glance, he told me he could drain it, but would rather wait and see if it would fix itself. I’d already been down that road before seeing this doctor. Well the waiting and seeing part. The draining part didn’t really give me the warm fuzzy feeling!
I left the crutches (I had a pair in the car thanks to Beloved) so I limped back out. Neither Beloved nor mysekf were impressed with the walk it off suggestion. The second Doctor I saw was also not impressed with that suggestion. Instead, he ordered an emergency scan and made us wait in his office for the results.
He muttered to himself for a few minutes before sharing the news. The joint damage was a lot worse than we thought. He suggested a new knee was about in order, but said I was too young for a replacement. With that having been discussed, he injected, wrapped, and prescribed items for my knee and told me to stay off it. He also told me to limit my time on the crutches, and his nurse told me she’d be seeing me daily for the next little while.
Not exactly what I had hoped for, but better than just walking it off. Especially since it can’t be walked off.