Does anyone else watch perhaps too many British shows and movies and then, seeing houses you recognize from other things, feel at once comforted by them, but then a little later disconcerted because they didn’t actually use that particular houses inside for the inside scenes? Is it just me?
I had an early brunch with a dear, dear friend of mine this morning. As we sat in her sweet little breakfast nook with tea, boiled eggs, and stollen, we chatted about how the year was going and she asked me what I was doing to nurture myself. Honestly y’all, I babbled out an answer full of things that made her go “THAT’S what you find nourishing?” Things like scheduling things, making sure everything had a task associated with it, being better organized, etc. She expressed a bit of doubt with my methods, but being the gracious hostess she is, she just let it go and the topic moved onward.
I got home a while later and really started thinking about it. I am not really a planner. Oh, I try and try to be, but in the end every plan lasts a few days and then I scrap it. So I spent some time just meditating on the idea of nurture and what it meant to me.
Here’s what I came up with:
- Nurturing me means extra time around everything so I can digest experiences. Yes, that means a bit of planning, but it is soooo good to have time around things and not just be chock-a-block busy.
- Nurturing me also means time for music, which I have not been making. The words “I haven’t played the piano since I got these progressive lenses” slipped out of my mouth and now that I’ve ruminated on it, I got the glasses in January (9 months ago) and haven’t really touched the piano since my mom died. Hmmm….
- Nurturing me means time to read. I have “Time to Read” in my Habit Tracker, but how much have I really been reading? None. Like one day a week, which is very close to none for a Lisa.
- Nurturing me also means eating foods I actually like. My husband is very good about cooking dinner, but he is very bad about making food that I really am fond of. Part of that is that the kids hate everything and part of that is that we really, Nick and I, have a totally different palate. I’ve been cooking my own lunches this week and eating all the things I love, like mushrooms and onions and zucchini and sweet potatoes and cabbage, and have been so happy at lunch time!
Anyways, that’s what’s on my mind today. Time to go eat the mushroom/onion/zucchini/feta dish that’s been sauteing while I type. 🙂 Hope y’all have a good afternoon!
Tonight I learned about how the definition of Rheumatoid Disease has changed in the last 15 years since I was diagnosed from just “joint pain and inflammation” to include all of my vast symptoms over the last five years (including, but not limited to, cardiovascular system issues such as high blood pressure, cerebral ischemia, heart palpitations, and stroke; autonomic system issues such as muscle weakness, muscle spasms, bladder dysfunction, spinal cord dysfunction, and sexual dysfunction; neuropsychological issues such as depression, anxiety, memory loss, brain fog, and lack of focus; demyelation of nerves, including numbness, tingling, spinal cord degeneration, and things that otherwise mimic multiple sclerosis (including brain lesions), swallowing, voice box, and throat swelling issues. Chest pain that is lung related, not cardiovascular in nature and bursitis, both of which is really where I started all those years ago in high school. ).
I read study after study, all from prestigious medical journals, with associated good, data-driven citations. I skipped the small studies with 20 people or less studied because they seemed silly.
I am super angry because I have never once in the last 15 years had a doctor explain any of this to me. Some have said “Oh, you can look it up yourself.” Or “We could print out something about this if you wanted to come back for it.” (Which I did have printed and came back for and it was just a three fold flier with information a decade old on it.)
I am struggling. I have been struggling for a lot of years now. I was diagnosed when my kids were 3-years-old and just under a year old. (There are three kids now, 18, 15, and 12). People treat you differently when you have a chronic illness from people who have something immediate like a heart attack, a surgery, or cancer. If you have something like that, people bring meals, help with child care or transportation, and housework. I have helped many people with that over the years, always to the detriment of my own family, because it was expected because I was a stay-at-home mom “with all the time in the world.” But no one has time for the chronically ill. We are expected to just suck it up and move on with life because our illness goes on and on. People expect us to get used to it, somehow. No one seems to care that we have pain and other issues that make it hard to function. No one wants to help with our meals, children, or housework. We are viewed as lazy and malingering. People and organizations constantly ask us do to things for them because they think we have a ton of unfettered, pain-free time to ourselves.
I am both angry and tired. It doesn’t actually get easier, despite the time I have had to get used to my situation. People are always assuming I have the time and energy to do everything I need to for my own family, plus whatever they don’t have time for because they work full time. I wish I could work full time. I wish I had the luxury of a healthy life. I envy people who can work full time and still take care of their kids and make dinner and run errands (and some of you even work a side hustle. How energetic!). You get these amazing, full lives. I stay home a lot. I have to sleep and rest just to be able to do the bare minimum. I don’t even shower as often as I’d like because it wears me out. It is frequently (read daily) boring and painful and I don’t wish it on anyone, not even people I’m angry with or who have hurt me immeasurably. I like to be positive and to share the good parts of my life with y’all.
I’m not looking for help or pity or anything else really at this point. If you were going to do something for my family, you’ve either done it already or chosen not to. Mostly I just wanted people to see through my eyes for a minute. If you couldn’t help us, at least you could see the kinds of things the chronically ill go through, and maybe consider helping the next chronically ill person you meet. Make the world a little easier for someone else. Because I spend a lot of my time pondering how I can help the next person I meet and I’d like to think that if I can’t help them myself maybe I can help someone else decide to help them. Thanks for reading this long, rambly post. Love you, humans.
I realize that there are bigger issues I should be worried about, but this gigantic pile of papers I had to fill out really is getting to me. Every year the school sends home one page of info about my kids, already filled out, for me to correct and send back. They also send me more than a dozen pages asking the SAME info over and over again that I then must sign and sometimes have my spouse also sign and sometimes even my little second grader. I have three kids and there’s about an hour per kid to fill out. I did two last night and one this morning. I have no idea if my kids ate or put good things in their lunches or brushed their hair or teeth…not just this morning, but last night, too. It is all-encompassing, this paper duty.
Yes, I know it’s not just “the school” sending these things. Some of it is from the not-associated-legally-but-still-at-the-school after care program, some of it is from my kids extracurriculars, some of it is from individual teachers. But the stuff in the district packet, that stuff? I shouldn’t have to write my kids name and particulars on every freaking page. The first page has all the details, I corrected them, the rest should just be a page of tick boxes: can we take your kids photos? are you living in temporary conditions? do you need federal aid for lunches? And then send those forms that legitimately need info home with the kids that need them later. This waste of paper and waste of our time needs to stop.
good people share faith, love, intimacy
… so trust the knowing in me
with effort, I metamorphosed myself…
synergy an interesting challenge…
into determined socializing.
and maybe eventually everywhere
the inevitable reward
our time is playful
so trust the knowing in me and maybe eventually everywhere the inevitable reward …
Inspirational web poem #2
Lisa Holcomb 2004
Image Poem entitled “Jelena”
Lisa Holcomb 2013
My eldest son was doing a poetry project for school, so I did it alongside him. One of the prompts was to write a poem inside a picture of how the poem made you feel. It was interesting to do. Mine was depressing.
1. Wondering when Dry Shampoo became Not A Thing Anymore. It used to be everywhere when I didn’t want it and now that I do, I can’t find it.
2. Greg hates school. Nothing in particular, just going. How do I fix that?!?!?!
3. David called me because I was 7 minutes later coming home from dropping off younger kids than usual. He was worried I forgot to take him to school. It was pretty funny. (Where was I? Looking for Dry Shampoo.)
4. Last minute kid projects are less than fun. I’m just saying.