An elusive thing…

I have been struggling so much lately to find any identifiable rhythm that brings some order to my days. It’s not the first time I’ve been through a season like this, but it is the first time that it is ME and my energy level that are standing in the way of finding some order. That really complicates things.

It’s been almost a year since I was diagnosed, but it took a solid six months before a sort of useful treatment regiment could be found with medications and diet, so it’s only been a few months under my belt with this disease and sort of ‘normal’ life. As so many of my friends with Chronic Illness tell me, it’s best not to get too comfortable with any sense of normalcy or ‘yay, the treatment is working!’ because invariably things will shift right back to square one at the most inopportune times. I do know, watching my friends’ experiences, that there is a point in time, a few years into it all, that you get more comfortable with what your disease requires and it doesn’t take up ALL of your brain space…but I’m not there yet.

I don’t think I’ve even quite gotten a solid grasp on how many spoons I actually have to even know how many I can spend on a given day. (Here’s an explanation of Spoons if you’ve never heard of it.) When I will have no spoons tends to happen at random, though some things are becoming clearer: a sudden weather shift, a loud sound incursion. But other days, there’s really no explanation as to why I feel so awful- and the way it can shift in minutes- it honestly causes no small amount of anxiety. I have become very wary of being out and about without my husband or my older teens with me. Nine times out of ten I am just fine, but that tenth is such a doozy. It’s terrifying to experience especially when strangers or acquaintances (or even unexperienced family members) have to help me, mostly because I am too in the thick of my disease to be able to explain my needs or how I need assistance.

So, my first order of business these last few months is just to listen to my body. My goodness, I think any woman (and especially a mother!) struggles with actually listening to our body. There are just so many demands upon it, and we tend to keep pushing through, even though we shouldn’t, because- if we don’t, who will? Right? But I am trying. Really learning to listen to that slightly tired, blah feeling and stopping right there. Because if I keep going, blow past that- I pay for it so dearly.

I am finding that my bedtime routine is probably the most necessary for me at the moment. I am getting almost militant about no blue screens past eight for myself. There’s a whole little litany of things I do as I shut down…Prayer. Lotion. Serenity EO in the diffuser. On my temples, behind my ears. Heat packs on my head and neck. Sound canceling head phones playing either the monk’s complines, or chant, or exceedingly quiet slow music for the length of time that the packs stay warm. Without it, my mind continues to whirl and my hearing just buzzes, making it impossible to sleep. My body has definitely made it known that I need that hard, quiet stop as a marker.

Cleaning and caring for my home has been quite a challenge. For a month or so, we had someone come in and clean the main areas of our home. It wasn’t something we could afford over an extended period of time, but for the time we did, it was very helpful and allowed me to rest and reboot and consider what I could actually accomplish when the period was over. The deep deep clean they did on their first visit helped too. We have divided a large amount of the work among the children now, which none of them particularly like, and none of whom actually do a particularly good job at it- work in progress, folks– but with the redistribution and occasional help from friends, we seem to have found a fairly decent system again. I am re-learning the best way for me to accomplish getting the mountains of laundry done, and it slowly, slowly, feels like it’s returning to a workable normal.

Just don’t glance at our faded paint, broken windows, abused garage doors, or our yard or garden, m’kay? It’s a bit, erm. Wild. My beloved wildflowers are more weeds than flowers, vines growing through the bushes, pokeweed in the rhododendron, and more poison ivy than you can shake a stick at. It’ll happen in its own sweet time, but man. It’s discouraging. The kids are pretty hard on anything and everything we use and the exterior is really, really starting to show it. Flowers are one of those things that just fills me with unmitigated delight. I love growing them, I love picking them, I love arranging them. Losing a lot of that to this stupid disease is kinda painful. I hope as I grasp how many spoons I have, returning to the garden might get a spoon.

Feeding a family of eight with such a weird unpredictability to my energy levels has got to be one of my biggest challenges, bar none. A friend sat down and helped me reboot my meal planning and grocery procuring systems -which I used to be quite ace at but somehow in this year of everything, my brain decided was non-essential information and just sort of dumped into the ether, buried in brain fog. It’s still a bit hit or miss. This week, for example, has gone relatively well. Groceries procured on time, meals made and ready at a reasonable hour. Last week, it was catch as catch can, all over the place, and we had to default to old standbys that no one even likes anymore because we’ve had them so.many.times. Neither my husband nor I really like to cook. We don’t really like food, either. It’s just not a thing either of us are gifted at and it makes it so hard. It gets even harder when you have one with specific diet needs- Celiacs. And three with limited palates. And then me, who often feels more nauseated than not any more. Making something that fits all those demands when you feel like crap…it’s hard. It’s definitely the area that I am most working on right now.

Which leaves the sort of home projects, things needing done. I used to schedule these into my normal cleaning routine, but that just doesn’t work anymore. I do keep a running list of things I feel like I can accomplish, and when a rare synchronicity happens, I’ll pull a job that matches my energy level and needs off the list and get it done. It’s definitely a much, much, slower process, but there is still some movement. The harder part is the stuff I can’t really do on my own anymore, which seems to be multiplying at an exponential rate. It’s a puzzle to be sure on a tight budget, but hopefully I’ll figure something out. Perhaps some local teens looking for side jobs…there’s got to be some options.

Having written all this out, I’m actually feeling a bit heartened. It has been very chaotic and difficult, and will probably remain so, but I can also see how we’ve already begun to adapt. It will come with time.