comfort

This blog was originally about losing my mind and being sad when I got well enough to realize I lost my mind for a good long while. There is little doubt (at least to me) that my brain is returning.  I kept veering off the subject of crazy, though. and into grief. I had no idea that I was and am grieving right now. Grieving is  different than depression. Grieving the loss of something partially returned is different than mourning the loss of a loved one. Nonetheless, grieving overtly implies loss, and only now can I see what I’ve lost in the last three years. Only now that I am returning to health that I have the energy for such an indulgence. Perhaps ‘indulgence’ not exactly right—it seems unavoidable—but why can’t I use my returning energy for something useful?

I haven’t had a huge amount of loss in my life. Three of my grandparents died before I was thirteen. My Nanny died when Katie was young. I mourned, but I didn’t know profound loss until my mom died. That period of bereavement morphed into an outpouring of grief for all the hurts in my life. What purpose does this serve for humans? It’s never fun, always difficult, and the end result is, what? A blank exhaustion, a feeling that there are simply no more tears to be shed. That particular part of the journey is different for everybody.

What I really want to know was why I spend so much energy on grief. There are four stages of ‘normal’ grieving: Numbness/disbelief, Separation/distress, Depression-mourning (are the two inseparable?), and Recovery. There is something called ‘complicated grief’ (wtf? is that different from ‘simple grief?) and ‘infinite loss’. I hate having my journey so neatly compartmentalized, so pedestrian. On the other hand, knowing this is normal is comforting.  I found myself feeling much better just reading about  ‘Perpetual complicated grief’, aka, constant sorrow.

I am not a woman of constant sorrow. There are times when an inertia settles over everything, and that’s unpleasant. The grief is like a low-grade fever, not incapacitating but definitely a factor in my everyday life. Grief from chronic illness is different from acute or terminal illness. Those illnesses have  a definite end, one either gets well or one dies. Chronic illness is a series of losses, unending, and multiple. These are known as infinite losses. Great. Constant sorrow over infinite losses. Sounds Sisyphean, and it is.

The most difficult aspect of chronic illness  and grief is girding up for the next round. As I write this, it (finally, DUH!)occurs to me this is why I am continually battling exhaustion. This is why I nap daily and sleep eight hours a night. Maybe grief serves as a reminder to my body: this isn’t over, you need to rest, don’t get too excited, now. As if I need a reminder.

Sometimes I wonder when this (Lyme and grieving) will be all over. More often, though, I remind myself that the weight of my illness and grief are the only things I get to determine. So I bumble on, wrestling with keeping both loads as weightless as I can, while still trying to live. I need to be smacked in the face to recognize what is often right in front of me. Putting a name on what I am experiencing is what I need to recalibrate. Which brings me to comfort. Anyone who has gone through this process understands the need for comfort. Respite might be the better term, but comfort through the process is elemental.

I have time-tested activities that provide comfort to me. Some are mundane, like cooking and cleaning. The results of both are deeply soothing because they are concrete reminders of my usefulness and skills. Movies. Cocooning in a dark theater and entering another world, no matter how grim, is essential. Music. Because singing loudly and badly with your favorite songs never gets old. Walking the dogs. No explanation needed. Playing pickle ball. I love the game and the people. I don’t want to brag, but I’m popular with the over-65 men. Writing. For some reason I love spilling my guts to everyone. After the first time, it gets easier. Lifeguarding. Any work is better than not working. Besides, I like lifeguarding. I think deep thoughts staring at the pool.

Sometimes it’s hard to recognize whether I’m grieving or relapsing. A friend who has battled a chronic illness for years told me that when he’s having a good day, for whatever reason, he lets himself enjoy it. Does whatever he wants and doesn’t feel guilt AT ALL. I tell myself to do that, but it isn’t easy. I have trouble gauging how much I can handle, and tend to beat myself up when I do too much. Maybe when I get to the recovery stage I can relax and enjoy life fully.

Where does all this grieving and ruminating leave me? A little bit stuck, I guess. I am going to have to trust in myself (always dicey) and have faith that one day grieving and healing won’t be so hard. Meanwhile, I keep busy cleaning, resting, lifeguarding, writing, vegetating, playing pickle ball, walking the dogs, working from home, and above all, trying to get to that zen space of enjoying myself guilt free.

ps I started this blog before Las Vegas. The sense of grief over events in the world today is a daily battle. Comforting and being kind to yourself is more essential than ever.

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rebellion

Getting completely well is harder than I thought. I am so close to the end yet farther away than ever. This is where I should get some kind of power surge, both mental and physical. I am sputtering. No surges here. Instead, my head and body seem united in a small rebellion. Anyone who knows me well has seen how hard I work at getting better. Clean eating (and by clean, I mean no gluten, dairy, sugar, processed food or caffeine. Go on, try it. I dare you), early bedtimes, naps, gentle exercise, mindfulness, and strict adherence to taking my medications. I’d give myself an A+ in this, until now. Now I find myself skipping my medications. I ate dairy the other day. It did not go well. I had half a drink on a date, and it was delicious (it was also a great date. I want to see him again, see if the chemistry holds, but Trump fucked that all up). The alcohol didn’t affect me as much as I thought it would, but I had maybe half a shot of a Rusty Nail. God, I love a good Rusty Nail on a cold winter’s night. I eat too much or too little. I eat chips for lunch sometimes.

Maybe this is to be expected, a more realistic path than the monastic life I have led for the past two years. Maybe I am frustrated, and tell myself “what the fuck, it doesn’t matter. After all I’ve done, I’m still sick.” This is a dangerous time for me. I have to be able to see the light at the end, and it’s not there. Why is healing so hard? Why does Lyme have to be so goddamned hard? 90% is no better than 50% for living a life. In some ways it’s worse, because you get a glimpse of a normal life again, but can’t quite do it. In a sick way (sorry, bad pun alert!), nodding off on the sofa was preferable, because I had no choice in the matter.

How did I handle this in the past? If I look back, I always hit this stage at some point post-surgery. After my ACL replacement, I hit rock bottom around three weeks after. My ex, an old hand at taking care of me after surgery, knew my pattern well. He brought me a dozen oysters and a bottle of Pouilly Fuisse (or fussy pussy, as it was known in our house). It helped tremendously. Lyme is different. I get a string of days where I think this is really it, this is the end. I’m going to feel great. Then I don’t, and I don’t know why. This turned into a bit of a whiny rant, hasn’t it? I don’t care. And that is at the heart of my rebellion. I think I am mentally tired of being positive. I also think the political turmoil that is Trump has been soul-sucking and spiritually exhausting. I’m going to have to find a way to tap into some good juju.

Update: I had an acupuncture treatment this morning. There are reasons I don’t feel well, and they are spelled h-o-r-m-o-n-e-s. Ha! Held hostage by my body once again. By the way, acupuncture rocks. It’s hard to find the words to describe the way it feels. For me, after the initial shock of some of the needles, (if your liver is flaring up, the needle zings as it goes in, and not in a nice way) it’s like a warm electric current flowing through my body. She cradles my head and does acupressure up and down my spine, neck and hips. It is heaven. Oh yeah, she said relax, give yourself a break, you’re only human. I think I’m gonna be alright.

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