Postcard from Bad Days

My mental and physical fatigue, paired with relentless neuropathy are making it impossible for me to post a real, thought out, full-length post. I can’t type much. I can’t focus. I am very grumpy and unpleasant. I’m not sleeping well. I’ve been housebound (aside from bringing my kiddo to/from school) the last two days. I have so many things I want to do, and I can’t do any of them.

Yesterday, I spent the morning in bed. I did a little knitting to distract from pain. I propped up my aching limbs on pillows and listened to silly podcasts.

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After a few hours, I thought, “Okay, mind over matter! Let’s go!” and headed to the kitchen. I had ingredients to throw in the slow cooker for dinner. It only took 15 minutes for the neuropathy in my limbs to intensify to the point that it was hard to stand or use utensils. It was a tough defeat to take. Four hours of rest got me 15 minutes of activity. Pardon my language, but fuck that shit.

Today, I am so desperate to get out and do SOMETHING other than feel awful. Here I am, showered and dressed, covered in cosmetics…

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…and now completely exhausted from doing those simple things to get ready for the day.

Unable to accept defeat again, I write this from my neighborhood Starbucks, which is a short walk from home. A yogurt and coffee before me. My back aching in this shitty chair. Fingers tingling as I type on my phone (laptop was too heavy to carry). But I’m out. I made it out.

 

 

 

Planning for Pain

Last week, I visited my doctor, and we decided to resume some antibiotics. Back in September, as I prepared for the Butt Injections of Antibiotic Doom, I discontinued all oral antibiotics. The shots are a lot for the body to take, so I needed to stop taking the other drugs. When we decided to discontinue the shots, it seemed natural to not add anything back in, so I could see how I felt without it all. Mid-October – mid-November was great, but I’ve been in various shades of rough shape ever since.

A couple of the antibiotics that I took previously – rifampin and azithromycin – seemed to do a lot for me. They sparked obvious herxheimer reactions, and some of my best stretches of feeling pretty good were when I was taking them. I was not on either of them for more than a few months. So it seems like a good idea to give them another go. It is also common Lyme practice to continue treating with antibiotics for a while beyond when someone starts to feel better, so even more reason to give those drugs a little more time to do their work.

I started one on Monday, thinking a herx might hit Wednesday (it had taken two days to hit when I took it last year), a day my son would be in school, and I would be able to rest if needed. I imagined I would leave a little more time before adding in the other drug to see how that went, but then I realized I would be risking a weekend herx (and we might get snowed in, here in the Boston area), and I don’t want to wait until next week because I need to be on both drugs for a good stretch of time before my next appointment, so I settled on Wednesday to add in drug #2.

This is life with Lyme.

I realized on Tuesday, with horror that my perfect Wednesday herxing plan had a flaw – I had plans to see a movie with a friend that night! Oops! Too late – drugs were already on board. But it worked out okay! One of the tough things about herxheimer reactions is that one never knows what form they’ll take. Will I get knocked out by can’t-keep-my-eyes-open fatigue? Will it be searing joint pain? Will it be brain fog so dense that I keep forgetting what I’m doing and have trouble with conversations? It’s like a really depressing lottery drawing. For this herx, I was treated to a symptom I hadn’t experienced in several months – the ice pick headache!!

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In bed with ice pick. Bangs are so useful for covering droop.

The ice pick headache was one of my very first Lyme symptoms that started back in September 2014. By half way through 2015, I wasn’t getting them at all any more. Two days of rifampin, and BAM, woke up with an ice pick through my forehead. The pain waxed and waned through the day. Fatigue was present, but not crushing. I rested in the morning, after which I was able to run an errand – though I did skip taking the train and schlepping my purchases home, opting instead for a car service to conserve energy. I used the remainder of the afternoon for more rest, and was able to really enjoy my night out with my friend.

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Out with the people! In the night time!

Some days, the Lyme wins. The fatigue is too intense, the pain too severe. But some days, with careful care and planning, I can work through the pain, fog, or tiredness and live a bit.

**If this is a bit disjointed, apologies. Lyme brain in full swing**

Trial, Success, and a New Tool

So much of living with Lyme Disease is trial and error. Lyme attacks all body systems, and each person’s case is unique. Many doctors have different theories of what helps, and many patients have different levels of success with each treatment, drug, or supplement. So when something definitively helps, it’s pretty exciting.

When my neuropathy / nerve pain and Bell’s Palsy became unbearable in Decemeber, my doctor told me to restart Inositol, a supplement that targets the nervous system, which I had previously been on for many months. She also added two other supplements – a form of B vitamin and a lipoic acid. I have experienced vast improvement since adding in these elements!

The effects were gradual, and I was still struggling with fatigue and pain over Xmas and our subsequent travel, but I had good moments and was able to enjoy the holiday with my family.

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 So fortunate to feel well for some outdoor holiday fun!

The neuropathy and Bell’s are not entirely gone, but they are quite minor in comparison to the level they were at a few weeks ago, mostly activating at the end of the day, or other when I am really tired. In fact, I am overall feeling significantly better than I was throughout December. I don’t feel great, but I’m doing okay, which is a very welcome change.

I’ll be headed back to my doctor soon, and we’ll strategize next steps to help keep me on a good path.

Mentally, I’m at a place of feeling determined to get my life in order. Being sick for so long, going through these cycles of being debilitated, and feeling okay, over and over, I often feel out of control. Having memory and energy problems in particular make it feel really hard to maintain a grip on my life. In the past, I have used a method called Bullet Journalling to keep track of my schedule and tasks, and I’ve decided to get back into it!

A Bullet Journal is basically a completely customizable planner to keep track of anything you desire. I’ll be planning out daily tasks and goals, yoga classes to attend, and keeping lists of things I need to remember. I’m also using my Bullet Journal to record my symptoms on a daily basis, to help track how I’m doing Lyme-wise.

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I already made some mistakes here, and I think I’ll tweak it some for next month, but it’s a start!

I’m tracking some habits as well, to try to get me into a routine of caring for myself and my home in a manageable way.

I’m hoping this tool will help me to feel more in control and provide a clear picture of how my illness is progressing.

As always, hoping for more good days ahead.