I spent the morning working in my petite garden (as a coworker quite aptly described it). I weeded and dug out plants that I didn’t particularly like and which had taken over my limited amount of space. I pruned lavender and cut down chives (I smell like onions now), removed some horrible tall grass that blocked the view of my yard, and relocated ground cover. Until this past week, that area of the garden was quite tangled and messy. In many ways, the state of my garden reflected my mood, my thinking, the state of me.
My mind is muddled. I think that’s the best way to describe where I am. In some ways, I’m feeling much calmer and happier, but I also feel confused, restless, panicked. Part of the confusion may be due to the extreme fatigue that appears to come out of nowhere or happens as a result of pushing myself too hard (ahem, gardening). I learned a hard lesson when I was ill: I can’t always do or accomplish what I want, I never know how I’ll feel from one day to the next, I can’t always achieve what I set my mind to. Now that I’m working, I’m feeling a stronger sense of independence and confidence, something that I thought I’d never regain. At the same time, with my energy focused on work and resting, I’m again in the position of rarely making any plans with friends or decisions about life, even if it’s something as simple as going to dinner with a girlfriend.
There are definitely some connections lost when you have a chronic illness and relationships, usually familial, that are strained. I’m not sure if that happens to everyone dealing with an unpredictable disease, although I have come across a number of bloggers and other lupies/fibromites who feel the same as I do. For me, I’m fortunate that I haven’t been dumped by friends; of course, the people I count as close friends are wonderful human beings and they knew me before I was sick. They don’t seem to mind or judge me when I’m a hermit and they’re flexible when it comes to making plans. I’ve somehow even managed to make amazing new friends through work and social networking. However, I’m less impressed with my ability to be a good friend and I lament the potentially deeper friendships I could have made with certain acquaintances of mine.
I’m sort of hopping around here, but I’m really trying to express the confusion and frustration I’m dealing with. I think. I recently had the ANA and ENA panels tested — my numbers are better than they were two years ago and I’m quite healthy. Hooray! I can tell because my pain levels are at the lowest they’ve been in years, and even though I’ve lost quite a bit of weight since October (25 lbs) and am having days with extreme exhaustion, I can sense the improvement in my body. It’s a strange way to know what’s going on with one’s physical self: I can feel the slightest shift when things aren’t working correctly but I can also sense when things are beginning to work well. Maybe everyone has this ability or gains it as they get older.
So, my physical self isn’t perfect, but it’s stable. Stable enough that I’m feeling cautiously optimistic about life. But my emotional health is still a bit messy. Where I once felt tethered by my pain and depression, I now feel afloat without direction or understanding. I’m hovering through life at the moment, trying to get grounded, wanting to feel secure and connected or maybe wild and daring. Returning to work was like returning to the world again, something that I really had to work hard at, something that I’m still working hard to maintain. Yet I don’t know what I’m doing, where to go, who to be — ideas and confidence that I was born knowing. I understand that these are feelings most people experience at some point in their lives. But they’re feelings I’ve not felt before and attempting to reign them in is like working out an unused muscle.
To some this probably seen as a spiritual crisis. I’m not sure what spirituality means. Or maybe I do but have forgotten how to access that aspect of life. Some people who know me would probably be surprised that I once considered myself very much connected to a spiritual self. I believed and practiced this. But I’ve been so rooted in the corporeal that I don’t know if anything beyond that exists and to believe in a spiritual self feels like a silly privilege or an affected manner of living. Maybe there’s a falseness I sense in others who consider themselves spiritual or maybe I’ve become a much more cynical person. I’m sure this attitude has bothered certain people in my life, as they’re always trying to talk me into believing what they believe and as though my lack of belief somehow challenges theirs.
Another aspect of my muddled mind is brain damage. Of course, there hasn’t been any physical changes to my brain and I am not really brain damaged, but maybe on some small scale my brain has been tweaked. I feel dumber, learning seems more difficult, and I’m not sure I have a good grasp of language anymore. Of course, part of the problem could simply be brain fog due to fatigue and word finding issues, the latter may be a side effect of one of my medications. The time it takes to explain myself or find the words to do so can make conversations slow and uncomfortable — or hilarious. Speaking to me is probably like filling out a game of Mad Libs – noun, adjective, verb, very little context – but not nearly as dirty or amusing. I would feel very frustrated if I had to have a conversation with me.
On a side note, I’ve read that chronic depression can lead to hippocampal atrophy or brain shrinkage. That’s not something you want to hear, right? Fortunately, this appears to be something that can be reversed. Aw, science! At times this can all be very difficult to grasp, as I’m inundated with so much medical information and I acknowledge that interpreting it is difficult. I ask my doctors as many questions I can think of and I research my medications and conditions the best I’m able to. I know what it’s like to feel terrible and what it’s like to feel well. This is probably why I’m not as afraid to take prescription medications as I was in the past, why I’m not always suspicious of Big Pharma, and why I avoid any supplement (even if it’s “natural” — I’m less concerned with chemicals than unregulated and non-clinically studied supplements) sold as a miracle cure or immune booster (for people with autoimmune disorders anything that could possibly strengthen our overactive immune systems is bad news).
It’s past 1 am and this post has wandered much more than I expected. I didn’t touch on the guilt associated with feeling better while others with similar illnesses are still struggling. I didn’t elaborate on the tiny, every present thought that this physical respite may be fleeting. Nor have I mentioned how and what I’m doing to figure this all out. Oh — and I haven’t even discussed what I’ve been thinking about the most: why we want what we do. Are the things we can’t do really necessary to live a happy, peaceful life? These aren’t really unique or new ideas and for centuries these are questions explored by philosophy, religion, and even science. I’m not looking for answers just for some comfort. There’s so much more to consider and to discuss but, for now, I’ll leave it where it is. This is probably part of the process of coping and of getting well – a type of weeding of one’s mind. Digging out the unnecessary, choosing what to want, nurturing and providing a way for the helpful and beautiful thoughts to flourish.
