The four stages of relapse

I’ve decided it’s time for an (admittedly tongue in cheek) exploration of my emotional reaction to relapse. Tongue in cheek not only because I’m comparing to a very well known model normally called “The five stages of grief” but also because the evidence suggests that that model is a poor representation of what really happens to people suffering from grief (as described in this news article which explores grief across cultures and a book by psychologist George Bonanno who has studied grief, its heterogeneity, and successful coping with grief extensively). So with those caveats in mind, here’s my version:

First off, I am pretty much always experiencing two things at once. Secondly, my order is different.

Denial + Acceptance

I seem to be a master of Cognitive dissonance at the start: Big voice in my head: These initial symptoms will not be a relapse. They WILL NOT BE  A RELAPSE. I will repeat that as often as necessary. Small voice in my head: I’m probably going to have a relapse, but it will be short and I’ll move on. What I say to others: I’m feeling fine. What I tell my husband: I’m having night sweats (or whatever other symptom) so be warned. Hopefully it’s nothing.

Bargaining + Creating A Solution

I go into research mode. My pattern is the same but the outcome is different each time. I come up with some “solution” that will make things better, research the wazoo out of it, start down that road, and if I’m lucky drop it completely because the relapse ends. For example, last time around I researched disability accommodations, this time around I researched canes and low dose naltrexone. The fact that I got to two things (and executed on them both) is probably a hint that this relapse has been longer/worse than usual. This comes with a fair dose of optimism: whatever I come up with, I’m convinced will help. In the case of my new treatment idea, I was stubbornly applying the placebo effect along with hoping it would work for the first four days I took it. On day 5 I could not ignore the symptoms that were coming back, but I’m still going for the placebo effect — though I’ve never experienced one before I’m going to believe this is a herx!

Anger + Self Doubt

I’m currently in the “I want to throw things (if only I had the strength to)” stage. Actually, I do have the strength to sometimes, but at those times I’m neither angry nor depressed so I don’t want to then. It’s when I wake up from a nap and my arms are too weak to even use my cane easily that I want to throw something. This is about when I also allow myself to start wondering if I’m not going to get better, should investigate other diagnosis, and whether I’m contributing enough at work to be useful there, whether I should just stay home and give my kids what they need, and why no one asked me to review any UIST papers or sit on any proposal committees this year.

This doubting is a bit ridiculous considering I am on a program committee and an NSF panel this spring as a reviewer, submitted 8 papers just this Spring (7 to top tier conferences), am co-advising 6 PhD students, teaching a class, helping with the hiring committee and tenure review, and spending plenty of time with my kids. I needed to say (and read) that so forgive me for the self-indulgence. But doubt I do nonetheless. It’s true that at home long walks are limited to when the dog and I both want them, I have lots of kid time, and I can use my energy as much or as little as I want, sleep when I want, play when I want, work when I want. It is so much easier that way, and perhaps that’s the most legitimate reason I phantasize about “just stopping”. On the other hand, at work I am valued for my mind (especially useful to feel and know that when the brain is sometimes fuzzy or difficult), and I contribute in a totally different way than at home. Work may be hard at times but sitting at home feeling sorry for myself while the kids are at school (worst case) would be far harder.

Recovery + Change

I have to believe it will end with recovery, as it always has in the past. A day will come when I get back on my bike, put my cane away and can just be myself again. Or maybe a day will come when I am comfortable in my new skin. But I’m betting on the first outcome. It may make it harder day to day since I don’t truly accept what’s happening to me, but it gives me hope for the future. Besides I get to experience “recovery” almost daily for a few hours here and there. And I am becoming more comfortable using my cane. I don’t use it at home — that’s a space to be myself, relax. But at work, instead of worrying about the attention it attracts I feel the positive energy and support it brings me.

A Good Remedy: Patience + Faith

So where does this all leave me? It seems like forever, but this all started getting bad only at the beginning of March. So I’m a month and a half in, looking at an international trip in a few weeks, realistically this could last 3 months given that travel. Not terrible compared to other relapses, not great either. What I need instead of all of the other things listed above is one simple item: patience. I need to persevere through this as through all the others and wait it out. And I need to keep the faith that this too will pass.

symptoms, thoughts

Feeling better and a few firsts

First some news — I am happy to say that I am no longer suffering from constant headaches, have less dizziness, am not totally soaked when I wake up (though still sweaty) and generally seem to be improving. I still tend to need either an early bed time or a nap or both and have regular swollen and/or painful lymph nodes, but I am less dizzy, less out of breath, and generally happier with how I’m feeling. The improvement started as slowly as the original downturn, and definitely before I changed anything in particular. However it may have spread up as I began taking large amounts of vitamin D and starting the new energy-device. I can’t say for sure, and would not want to draw conclusions at this point. I probably won’t want to draw any real conclusions until I see either a total lack of symptoms (almost never happens) or I go for a year without a relapse. For now I’m just grateful for what I’ve got.

As for the firsts, I have in the last week for the first time had a doctor tell me he thinks I probably never had lyme disease in the first place, and had an acquaintance ask why I didn’t use make-up to cover up the fact that I look tired. Both of these, I am sure, are not uncommon experiences for others in the community. Neither threw me — I’ve been dealing with this long enough that I have fairly stable opinions about what’s going on and how I want to deal with it. However, they were a reminder of the ongoing mismatch between the expectations and views of the average outsider/doctor and who/what I am. I won’t even both to discuss why I think the doctor was wrong, I’ve spent plenty of time already on that in this blog.

But the use of make-up — that deserves a response, at least here if not in person. I know there are many opinions on this, and I have acquaintances with chronic illness who work very hard to make it as invisible as possible. I do not mean to criticize those choices in what I write. But for me, personally, make-up is not a solution. I don’t use it normally, and putting it on just to hide how I’m feeling seems counter-productive. My illness is invisible enough already. I appreciate the fact that people who care enough to look can see that I’m not well when I’m not. It makes it easier when I need to ask for help, or simply contribute less to an event, conversation, etc.  Additionally, while having Lyme disease does not define me, it is part of who I am. I am many things, and I don’t hide any of them. I  don’t see a reason to single this one out.


Thank you

Today was one of many days when I leaned outward for support and found many arms and hearts ready to receive me. I want to acknowledge how much of a difference they have made in my life and my experience of Lyme disease. For example, earlier today I was trying to work on a paper and a headache struck. I felt tired and ready to give up. And then I thought, maybe I just need someone to remind me of how and why I am strong. I talked to a friend on instant message, asked for help, and they freely gave of their time and support.

So I want to take a minute to step back and write a letter of thanks. It will do me good and maybe some of the people who deserve it will read this. Continue reading “Thank you”

my story, treatment

The PIC line is gone… what now?

I looked forward to today with such anticipation, I had no idea how much I wanted that line out of me until it began to approach. I guess that’s my brain avoiding cognitive dissonance. In any case, I had grand plans for the day: a long bath without any plastic protecting my arm, and a long nap afterwards.

The day was everything I hoped… and yet more of a let down than I anticipated. As more than one person has asked me in the past few days … “what now”? I know the answer, but it’s not quite what I wish it were … continue on the slow road to recovery. I guess that’s one of the things this blog will document.

my story, symptoms

3 days and counting…

Well it’s 3 more days of IV antibiotics and then freedom. It’s also the solstice, and the week in which I turned outward again towards the sun and hope and began to feel the seeds of some inner change take root. As I’ve experienced with past chronic illness, I had hoped for much more much sooner, and it took time to accept the speed with which change is happening. However, I have no doubt that it has begun.

This is the first post in this blog, and was inspired by a friend’s suggestion that I should enter some of what I’ve learned here for others to benefit from. I plan to go back in time and create a history based on the notes I’ve taken over the past 13 months. However, dates are only truly accurate going forward from here.

my story, tests

CAT Scan, weaning, unweaning …

Probably one of the most difficult moments of this whole experience was the morning of October 4th, when I showed up at the hospital to get a CAT scan. After all the paperwork was done and I arrived at the lab, I sat down for the nurse to prep me, and she asked me if I was nursing or pregnant. I said that I was nursing, and she explained that I would have to stop nursing for the next 48 hours because they were going to inject me with a contrast that would make my breast milk dangerous for my daughter.

I lost it. I was totally unprepared for this news, I had not prepared my daughter, I still felt guilt over having weaned my first child suddenly and had sworn I would not do the same to my second, my husband was out of town, and I had no clue what to do. Luckily, I reached my best friend on the phone, and she walked me out of my emotional response and encouraged me to put my health first, which is what was sorely needed at that moment. I told the technician to prepare me, but could not stop the tears from running down my cheeks as I did so. I already knew that I would probably wean my daughter for good, as her night nursing was interfering with my sleep and I knew weaning her was one of the steps I needed to eventually take as I worked on healing myself. A doctor walked in as this was going on and asked if I was o.k. I did my best to say yes, but I’m quite certain that moment is the reason the lab called back less than 8 hours later with the results of my CAT scan: NO CANCER. What a relief, for me, and especially for my husband, who deeply feared that we would get bad news.

I returned home and (after consultation with at least one more friend) told my daughter that just like mommy’s arm was not working last week, this week her breasts weren’t working, and that I could not give her milk. Her response makes me cry even now months later as I write this: truly the worst part of weaning her was sitting in the hospital imagining how she would react. She handled the situation with a grace that I still strive for when faced with unexpected and unhappy events. Unfortunately, at the same moment, she took on a burden bigger than a 2 year old should have to bear, and it began to visibly wear on her as the week progressed. Finally 10 days later, my husband and I decided to allow her to return to nursing.

This return to nursing was decided on after a tearful morning talking to a wonderful La Leche League leader who supported me in my choice to wean, but also encouraged me to consider options I hadn’t seen. In particular, she told me that I could choose to feed at times and frequencies that made sense to me, rather than those preferred by my daughter. I chose to allow nursing only once per day to minimize the physical requirements: the time of day I treasured most, right when I come home from work. No night time nursing, and no frequent nursing. Also, should I have to wean again if my diagnosis required it, only one feeding would need to be eliminated. Athough a little bit of a bumpy transition, the return to nursing was exactly what both I and my daughter needed.