Stalled

I been holed up lately, because there’s not much to say right now. Yes, I’m still sick. No, I don’t know if I’ll ever be completely well. No, there’s really no clear path or prognosis for me. Yes, it sucks. The uncertainty and grind of being sick for so long has started to wear me down a bit emotionally. Since I can’t change the fact that my future is not predictable or stable, I have to change the way I look at it. This is euphemistically called ‘adjusting my expectations. What a loathsome phrase. We all know it really means ‘tough shit, your life is not the same, it’s never going to be the same, and you’d better fucking get used to it’.  After four+ years of Lyme, I am stuck in the ‘almost well’ category. Why? Who knows. Maybe I’m not trying hard enough. Maybe my body reacts to things differently. Maybe there are other factors in my environment. Maybe I’m one of the unlucky few that just can’t quite get well.

It doesn’t really matter at this point, the adjustment has to be made. I’ve been working on accepting that I managed to get a serious illness since the onset of Lyme. Lyme keeps moving the bar and fucking with me. I get better, something pops up, I get sick again. What is truly mind-boggling is how obtuse I can be to the cycle.

It’s a level of stupidity that I can only ascribe to both Lyme and my own inclination to turn a blind eye to bad things. The signs are all there: I forget dates, I’m exhausted, I cry at nothing, I can’t concentrate, my neck hurts, my hands throb, and my teeth hurt. The same damn things every time and still I’m blindsided when I have another relapse.

After that, I accept the fact that I have to hoard my energy, and always plan for the worst. It makes my social life unpredictable and my working life difficult, but I do it, and without too much fuss. Emotionally, though, I struggle every day with adjusting. This is where I stamp my foot an scream “but I don’t wanna!” Lyme doesn’t give a rat’s ass what I want.

Picking which adjustment has been the hardest would be impossible. Is it that I can’t work full-time? Or maybe that I can no longer just up and do something. Perhaps it’s the uncertainty that if I DO do something, I might not get out of bed for a few days. It also could be how weak and puny I feel about myself when I get sick once again, as if my body is betraying me again. Maybe it’s the guilt I feel about constantly cancelling out on friends, or ignoring their emails, texts or phone calls because I just can’t summon the energy to talk to them like a normal person. It could be all these things, but I think the main thing is if I adjust, I am admitting I am an irrevocably changed person from Lyme disease.

For one thing, my life is much quieter than it was. It is amazing how having to parcel out your energy gives you a laser focus on what you want or need to do. I suppose I could blow off taking care of the house for a more active social life, or I could give up everything else and work full-time. Or I could simplify my life until I only have the essentials and free up time from maintenance for something else. Most people have to make some of these decisions, but not to the extreme that I do. When I decided to celebrate Thanksgiving and my birthday, it took four to five days beforehand devoted to resting and taking care of food and cleaning. Even then, I was knocked out the Sunday and Monday after Thanksgiving and my birthday party. It is ridiculous, and I hate it.

However, hate is an emotion that wastes a lot of energy. In fact, all extreme emotions use up energy. Love, hate, sorrow, anger, all suck the vitality right out of you, so they are best doled out in tiny portions. Bonus: I don’t have the energy to sweat the small stuff.  It’s been tremendously hard to wrap my brain around the various labels ‘adjusting’ conjures up: disabled, chronically ill, and malingerer come to mind. Once I get over that, I might be, no, I will be in a better place. If I know this to be true, then why is it proving so difficult?

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flabby

My mind, body and spirit have grown flabby from Lyme. I had good news from my doctor this week. I am, metaphorically, sprinting down the backstretch. Only I’m not sprinting, I’m lackadaisically strolling, the one pace Lyme allowed. This is supposed to be good news, and it is. I haven’t figured out what it means for me yet. I was warned that this isn’t an immediate return to health. My body is more than flabby, it’s a toxic waste dump. It’s worn down and tired from three years of illness. When I was out of town with Dad the last few weeks, I got compliments on how good I looked. What a cruel paradox. I’ve never looked healthier or been sicker.

I joked with my friends in Dad’s retirement village in Tucson (yes, I’ve spent so much time there that I have my own friends there) that I live the lifestyle of a five-year-old. I also joked (but not really) that I’ve gotten a preview of the ravages that age brings. A preview, not the big show. I hope I make it to the big show. I’ll at least know how important taking care of yourself is.

That was one of the best parts of my doctor’s appointment. I have passed into that strange relationship doctors and patients have when they are brought together through serious illness. Not-quite-friends, he knows too many intimate details of my body and life to be merely an acquaintance. I see his wife, also, and I was delighted to hear from each of them that because I work so hard on my health (italics mine, because I am pretty fucking proud of myself) they think I’m going to make a full return to health. Yassss!

One of the secrets to coping with a long, drawn-out illness is surrendering to the illness. Not surrounding as in giving up, but giving in. It is, however, quite possible that I have gotten too comfortable with this skill. It’s ironic that the coping mechanisms I used to get through the last three years might be liabilities on the road to wellness. So what do I do now?

I consider myself an athlete. I have never gone more than eight weeks without working out. Whether it’s tennis, swimming, pickle ball, weight-lifting, Zumba, Jazzercise, running, hiking, or yoga, I am always doing something. I have continued this as much as possible during Lyme; in periods of relative health I swam, played pickle ball, walked and lifted weights. Each time was hard. I’ve had no stamina for two years. Getting back into shape is always a pain in the ass. I’ve done it after each of my surgeries and I will do it again now. Five minutes today, ten minutes next week. One day I’ll wake up and be working out at my normal pace.

Maybe that’s what I need to do in other areas of my life. I’ve never lost my mind before, but I’ve been working crosswords, playing Words with Friends, writing, reading again—getting my mind back into shape. Now I have to turn that mind-play into mind-work. I’ve shied away from mental work because I couldn’t handle the inevitable failure trying to perform a challenging job while I had Lyme. Now that’s changed. First step will be to devote an hour or two each day to a new, online writing job. It will seem unbearably difficult to me at first, like that first time I swim after a long layoff. I feel like a beached whale the first three or four times, my limbs flailing through the water and lungs gasping for air. Then there is a day where I slice through the water, pushing the last fifty of a two hundred without dying. I will gradually work more hours. One day I’ll wake up and realize I’m doing it easily and happily.

It’s the time between now and one day that is daunting. I’m sure I’ll push too hard, or beat myself up for not pushing hard enough. I’ll cry and get angry and wish things were different. I’ll bitch and moan to anyone who cares to listen (anyone? anyone?) how hard it is. There will be days where I feel strong and sharp and in control. There will be many more days where I want to crawl under the covers. I don’t ever want to be this sick again. Never, ever, ever.

My spirit is the weak corner of this triangle. This is one of the few times I wish I had faith in something. How easy it would be to fob it off on “god”. That’s not for me, though, I’ll have to figure out how to get my joie de vivre back on my own. It may surprise me, what makes me happy and replenishes me. I don’t have a clue at this point. Or maybe I do, but like my mind and body, my spirit has also atrophied, the energy Lyme took far exceeding my resources. What if my spirit doesn’t come back? I’m scared I don’t have what it takes to make it down the final stretch. I know, I’ve made it this far, blah, blah. If I can’t figure out how to rejuvenate my spirit, all of this will feel insurmountable.

I look at the people in Dad’s community. Some of them face what seems to me to be unimaginable hardship. They all cope with their changes differently, that’s expected, but they all share an unquenchable spirit, a thirst for life. That’s what I want. I just want it to be easier to get. Not only that, I find I really want to hang around for awhile. The world is an endlessly interesting place to be. I’ll find out what my spirit is made of, and what revives it. I’ll use that knowledge when I graduate to the big show and I’ll stay thirsty for as long as I’m able.

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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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