denial

I’ve never particularly been one for self-denial. Not that kind! Jeez, people. The kind where I don’t ‘allow’ myself to do things I might enjoy because I’m chronically ill. There are several reasons for this, but the main one is that over time, I have come to feel guilty for still being sick and have twisted this into a toxic “I’ll do it when I’m better” mantra. This was extremely easy to stick to during COVID, but now that the world is coming to life, I’m starting to wonder why I’ve been doing this.

As I expected, there are tons of articles about this. There is guilt, embarrassment, shame, and disappointing others, and whoa! back up…grief. I think I’ve discussed this one with my therapist, but I shrugged it off as something I’ve already been through. What if I haven’t, though, and this stupid mantra is one of the ways I’m dealing with mourning my old life. I didn’t know this, but ‘serious illness’ is #6 on the life-stress scale, after Death of a Spouse, Divorce, Marital Separation from a mate, Detention in Jail or Other Institution, and Death of a Close Family Member. I suppose I have ceased to think of Lyme as a serious illness anymore. It’s been with me for over six years now, but it’s nowhere near as debilitating as it was for the second, third, and fourth years.

Wow. Maybe I am grieving, because sometimes I forget that there were THREE WHOLE YEARS of being sick over 80% of the time. That’s crazy. I could be either beginning to grieve again, or emerging from a long period of grief. Ugh. I’m going to have to think about this.

Fortunately, I’m not alone in my journey. So many people are having trouble emerging after a year of lockdowns that there are columns offering advice on how to rejoin the world. The decisions can be overwhelming, especially if you have worries about catching anything. Can I fly? Is it better to drive? Where can I go, and once I get there, what can I do? When do I where a mask? What if someone confronts me about wearing/not wearing a mask?

Overall, I’m not particularly worried about any of these things. My fears are more existential, it seems. Do I deserve to be out here? Should I allow myself to be frivolous, to have fun? If I do, will it be my fault if I have a relapse?

I just noticed the language I used above, the words ‘deserve’, ‘allow’, ‘frivolous’, and ‘fault’: I am limiting myself, I’m not sure it matters if it’s because I feel guilty, or I’m embarrassed, or grieving. Now that COVID restrictions are lifting, there is no excuse for self-denial. I have to re-learn how to let go and do more things that I enjoy. This is different than relaxing. I have to relax and take it easy to stay healthy. But what good is a life that isn’t lived?

I came back to Denver this week for a lot of reasons, but one of the main ones was to see my Lyme doctor. I knew something was off kilter, but didn’t know what. I’ve had a return of babesia and bartonella. I asked him if it could have been something I’d done. He said maybe, or maybe they made a return for reasons unknown. I hate the feeling of bacteria, parasites, and spirochetes hiding in my body, little bombs just waiting for an opportune time to reemerge and proliferate and not having much control over it.

Babesia is a real fucker, and I’d forgotten the crippling symptoms. The main ones are burning, blurry, itchy eyes, neck pain (like whiplash bad), headaches, body aches, a wicked intermittent sore throat, drenching sweats, and constant fatigue. This one, though, is the one that gets me: migrating, unrelenting, throbbing pain in my teeth and jaws. It gets so bad that I can’t chew. I spend quite a bit of time thinking that it’s not babesia, that one or more of my teeth are truly rotting or cracked or something. That’s the babesia speaking, as there is also a mental fog/rage/OCD component to deal with. And then the pains move somewhere else, and my teeth are just fine.  All in all a miserable experience, one I was glad to put behind me several years ago. Seems that babesia has other plans for me, forming cysts in my body until the time is right.

When I’m relapsing and herxing, self-denial is the last thing on my mind, the thought of ‘getting out there’ momentarily shoved aside. On a day like today, I feel thankful to walk the dog, get through some Spanish, and take care of myself.

But like everything Lyme, I’ll take the herbs and medicines, and the flare-up will subside in a while. I will play catch up, and then I will start wondering if I should get myself out there into life. Logically speaking, if there is no predicting when I will relapse, wouldn’t the strategy be to ‘plan’ for a relapse after I’ve had a trip, or a conference, or whatever I choose to do? That’s kind of what I’m thinking about now. I’m not ashamed to admit that I’m scared. Scared of making plans and scared of NOT making plans. Both choices carry risks and neither is a guarantee that I won’t relapse and feel as awful and numb as I do right now.

I can’t live like that though, and I’m going to have to figure out a way to spin this to myself in order to move forward and live. I want to stop denying myself the pleasure of playing pickle ball, or taking a trip to see friends once in a while, or going to the movies, or even relaxing one afternoon to binge-watch tennis.I think I’ll give myself credit for recognizing my dilemma and work on stopping this self-denial and start planning for the future. When I feel better.

 

 

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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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