my story, thoughts, treatment

Just a Cold

I’m miserable this week. And it’s making me happy. I’m coughing up gunk, sneezing, even slightly nauseous, and I’m still on top of the world. Why? Because it’s just a cold. It started on Saturday with a sore throat, and I am already starting to feel better. I can still walk my dog, I am still cooking and cleaning and taking care of my family, I missed only one day of work, and I can treat it with simple supplements, cough drops, and a warm bath or sauna (which I luckily have in the house because I used it to treat my Lyme disease). It is not a relapse which I feared might be coming on (as they have every year until this) at the start of December. I had the classic signs (nightly sweats, increasing fatigue days) but began a new set of supplements and seem to have staved it off. The supplements come straight out of the Burrascano guidelines, and include high quality fish oil, vitamin D, vitamin C, vitamin B, CoQ10, and a few specialty supplements suggested by my Naturopath. While on them (until this week) I didn’t even get a cold as my family cycled through more than one. And the relapse signs faded. So, pill popper I am not (by preference) but I’ll keep taking these!

I remember the days and days of being grateful for feeling well when I first came out of the worst of my Lyme disease (which I re-experience after each relapse), but today I am grateful for feeling lousy! And laughing at the very idea that a cold is a reason to give thanks.

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.

symptoms

Proof of progress

I did not realize how important it would be when I started, but for over a year now I’ve been keeping a daily diary of how I felt. At first it was fairly vague and subjective — overall wellbeing, whether I napped, sometimes a symptom that particularly stood out (such as headache or back pain). About 7 months ago, I met another Lyme patient who also tracked her symptoms, and she shared the chart she used with me. I’ve been using it ever since to track about 40 possible symptoms, only missing about 3 days a month. It takes 1 or 2 minutes a night to fill out. I show it to my doctor who sometimes notes trends (symptoms I had all month). I look at it when I’m asked to remember how I felt in the last week and my memory fails me. I sometimes stare at a month’s worth of X and / marks hoping to see a pattern….

Number of pain symptoms per day decreases over time
Number of pain related symptoms per day decreases over time

number of nerve related symptoms per day decreases over time
Number of nerve related symptoms per day decreases over time

Continue reading “Proof of progress”

thoughts

Highs and Lows

A quick update: After six weeks of progressively worse disability, I switched medication on October 26th to a different antibiotic. Within two days I was feeling as good as I had last august! Mostly, the change has stuck.

From the worst six weeks in a year, if not ever, to a relative high, I’ve been buffeted around by this illness so much that I can’t seem to keep up. One week, I’m researching what it takes to qualify as disabled (ok I had an ulterior motive — I was hoping I could bring my dog back to be with me as an assistance dog — she’s been staying with my parents because I don’t have time to exercise her and she could come to work with me and get exercise on the way in if she qualified as an assistance dog to someone with a disability). Another week I’m back to normal but afraid to write about it because after all how do I know it will last? I have a list of post topics developing, each out of date before I ever get to it. And another list that I just haven’t had the energy to write (don’t worry, they’ll get up here eventually).

But today’s topic is how to ride the highs and lows. When the symptoms of Sep/Oct lifted, I was ecstatic. Every day felt like a gift, each moment of energy an opportunity. I don’t wake up with a headache anymore, I have the energy to exercise again (like a switch was turned, I don’t even seem to need to build up my stamina), I can concentrate and write, don’t need to nap, …. The change seemed real not just to me but to those around me — people would look at my face and say, “Oh Jen, you’re feeling better!” Even so, one friend cautioned me that if I let my spirits rise to high, I’d have further to fall, while my husband simply could not allow himself to share my joy after only a day, or two, or a week. Are they right? Partly…

It’s only been 1.5 weeks, and I’ve already had to acknowledge that I’m still sick. First a head cold brought back some of my symptoms — luckily neither the cold nor the symptoms were severe, but they were a reminder that this is not suddenly over. Second, sleep is still a necessity, and lots of it. One night my kids were up and needing attention for an hour, and the next morning I had to stay in bed an extra 45 minutes before my morning flare faded. Third, I discovered yesterday that heat causes a flare up, and I’m still recovering. At work, a room with heating problems was overheated. 20 minutes into the meeting my light sensitivity increased, 30 minutes in I was resting my head on any available surface, 10 minutes later I finally realized what has happening and left … only to collapse, rest, and rest some more for the rest of the day. This morning things seemed better but now it’s lunch time and my pain, lymph nodes, and headaches are all plaguing me. Once again a nap is needed by mid day.

Either these problems are a sign of the long and bumpy road to healing, or they are a sign of the long and bumpy road toward accepting myself as I am. But in either case, they don’t negate the change that happened, or my joy in it, or the value of my ability to believe, once again, that I could get better. If they are, in fact, the signal to another downturn, I will most certainly be sad and angry, but part of me will also know that I have more strength than I ever believed before, that I can ride it out again, that there is hope that it will end. Whether I define healing as reaching spiritual equilibrium or in terms of physical achievement, the road to healing requires that I accept them.

Either the recent highs are a sign of healing, or they are a brief opportunity to rest and restore myself along the way to accepting what I have. They don’t negate the negatives, but the joy, happiness, and energy they bring me are in themselves a sort of medicine. I will revel in them while I can, I will ride them to their conclusion, and I will remember them when I need their warmth. Whether I define healing as reaching spiritual equilibrium or in terms of physical achievement, the road to healing benefits when I accept them.

symptoms, thoughts

Fighting to stay positive

Today has been difficult, no sign in sight of an end to the bad week. My back and neck hurt, my nerves feel hyper sensitive there and the only relief is when my husband touches my back. Also, my head has been hurting for hours, and neither a nap nor ibuprofin helped my head or back. In addition, my knees have been feeling arthritic today (a new symptom), my jaw is a little stiff, my ears are ringing and currently I’m nauseous. My abdomen’s still tender. And my mind’s been wandering again, making it difficult to sleep. At the same time, a friend who hadn’t seen me in a few months told my my complexion looks better, my face more filled out, than when she last saw me (pre-antibiotics). Her comments are an echo of what others have told me this week.

I know that hope and positive thinking have a very important role to play in healing.  Yet on days like today it’s very hard to keep my focus on that, or even on the positive comments, the negative looms so large: The fear that I will continue to get worse, that I made a mistake in which doctors I trusted, that I will have to revise my life again to a set of constraints I don’t want.  After hearing from this friend who hasn’t seen me recently, I am starting to believe that there is outward change to match the inward change I was feeling before this week. I’m glad I look better, yet even so I doubt it’s meaning. Is it a sign of healing, that I will get back to my old self, or just that the minimalistic lifestyle I currently subscribe to (little work early, bedtimes) is acceptable to my body?

Maybe I’m just setting my hopes on something too immediate, too specific. I don’t have faith any longer that I can map out my path to recovery. Maybe that’s ok. Instead, I will work toward the following: I will reach a day where I have moved beyond the pain and the worry.  I will reach a day when lyme is part of my history, a story I can tell my children, like RSI.

jen