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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symptoms

I don’t write much about the symptoms of Lyme. For one, it’s a rather long list. For another, who really cares, except for me, who experiences them? But I’ve been thinking about symptoms lately, because now that I’m getting out more, people ask me what my symptoms were. I kind of hem and haw and tell a light anecdote to give them the picture. Here’s the big problem: there are over one hundred symptoms for Lyme (http://www.anapsid.org/lyme/symptoms/ , http://www.lymenet.org/BurrGuide200810.pdf). Lyme mimics fibromyalgia, MS, ALS, Parkinson’s, Alzheimer’s and up to 350 more diseases. To try and standardize the list for all patients is impossible. I never had much problem with arthritis-like swelling and pain, where others are wheelchair bound. Every Lyme patient has their own peculiar set of symptoms.

Taken one by one, most of the symptoms aren’t that bad. Combined, though, and suffered day after day after day, they wear on you. The final insult comes when you start treatment. You get sicker! Woo-hoo! Nothing like endotoxins and side effects to ice the cake on sickness. I’m not sharing this for pity. I don’t want to hear “I’m so sorry you’ve been so sick”. Well, maybe I do, sometimes. What I want is to help anyone avoid Lyme in the first place. I want people to understand what Lyme disease can become if not caught early. The physical, emotional and financial toll is too high stand by idly.

I keep journals. I have kept them off and on for the past twenty years, but I’ve been fairly consistent post-divorce. There is a row of notebooks in my office, each one filled out from the top of the first page to the bottom of the last page, front and back, no paragraphs or indents. Just words. The ones from living with Lyme this past fifteen months give me a glimpse into my sickness, in case I want to forget.

Okay, here is one from  December 8. It was crisp outside and my one goal for the day was to walk the dogs. I had returned from New York where I was diagnosed with mid-stage Lyme disease: borrelia burgdorferi, babesia , and bartonella. I had fifty-six symptoms checked off. One of the worst was an abnormally slow heart rate. That morning I shuffled one quarter-mile. I have a pulse rate app. I did it three times during the walk. 42. 88. 44. I talked to myself, told myself I could do this. Every bone and muscle in my body ached, I had foggy spots in the middle of each eye. My teeth hurt, as did my head. I had to stop twice because of dizziness. I made that damn walk. I went to bed and slept. I woke up and took my meds (I’ll write a blog about that soon…it’ll blow your mind). I watched the Hallmark Channel (still trying to figure that one out!). Cried. Ate. Went back to bed. And that was all the entry said for that day. I’ve paraphrased here, because much of my journal writing is a stream-of-consciousness blast of cheerleading and venting.

You get the picture. Telling this out loud, in public, is almost as terrifying as taking off all my clothes in public. Why do I balk at talking about this? Was it my parents’ no nonsense midwestern sensibility? My own bias towards sickness and sick people? What? I can’t figure this one out. Maybe it has to do with whining? I am NOT a whiner (I’m a bitcher, but that is a whole different skill set). Or the ‘poor me’ syndrome. Awful. This brings me to play time. Now that I’m getting better, I am eager to date, to play pickleball, see friends, get out and do something. Well, what should happen but guilt. Big chunks of shoulds and have tos weighed me down. I should be working if I feel better. I have to get this yard in shape and take care of business. I bitched about this problem (curse words were involved…see the difference from whining?)  to my therapist. I’m pretty sure he answered with a question. “Why should you feel bad? Don’t you deserve to have some fun?” W.T.F. Have fun? Was he mad?

I felt a tremendous sense of guilt about being sick for so long. After all, if you are sick, you are not being productive. And not being productive is a sin. A mother’s definition, America’s definition, and mine, apparently. So. I am working on this notion that it is okay to have happiness after a long illness. I don’t have to plunge into everything, all at once. I played pickleball this morning. It made me happy. I saw old friends and felt the heady rush of playing a game. The rest of the day has been better. I’m actually working harder in between bouts of playing. It could be that play is vitally important to recovering health. Play gives me a truer taste of life as it was. Life has been lots and lots of watery gruel the past sixteen months. I’m ready for spice and comfort food.

 

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