The Disconnect

One of the biggest challenges of living with Lyme for me is the incredible difference between the good days and the bad. There is such a disconnect between the two. On good days, I feel like I could do anything while sick. On bad days, it feels like I’ll never be well again.

I have enjoyed a lot of okay, pretty good, and good days in the past few weeks. They were glorious. Living in a new place, with my son starting kindergarten, I have been meeting a lot of new people. I have been able to make conversation and even remember their names pretty easily! These sound like very simple things, but with the neurological troubles I’ve had from Lyme over the past year, they are truly monumental.

I have gone in for my butt injections, and after a short rest, been able to complete projects like unpacking boxes and organizing areas of our new home.

I have moved furniture, run errands, carried groceries up the stairs.

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Good day! Festival! Train Ride!

I have done some of these things, and then more on the very next day. Sometimes going for a few days at a stretch of relatively normal activity levels with nary an eyebrow droop!

But then, a bad day hits. I had my fourth bicillin butt injection on Monday, and on Tuesday I hit a wall / herx / bad day. That bad day stretched into two today. I’ve been on the couch. I’ve been in pain. I’ve been in a fog. The joint pain is searing. The face droop is heavy. My energy is nonexistent. It feels impossible to wash a few dishes.

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How can a wrist look so normal, but hurt so much?

On Monday, I installed track shelving in my son’s room. Today, I’m having trouble typing this.

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Good day: Energy! Productivity!

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Bad day: Full droop. Total exhaustion.

The sudden, major shift can feel disorienting, and is so disheartening.

Tomorrow is another injection and IV infusion, which means most of the school day will be spent at my doctor’s office. I’ll likely need to rest until pick up time, since the IVs make me pretty sleepy, making tomorrow my third day in a row of not being able to accomplish much other than being sick. I know good days will come again, but right now, it’s hard to see them.

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Report from The New

I’m happy to report that I had a great stretch, which coincided with moving! I felt really well for about a week. Timing could not have been better, and it’s a relief to have the move behind us, not to mention to be living so much closer to my doctor! It has also been very nice to not have to drive anymore. In our new neighborhood, we walk or take the train everywhere we need to go. Sure, the walking is its own kind of exertion, but I choose the speed, and it is much less cognitively taxing, and much easier on days that I’m not feeling well.

The bicillin butt injections are underway. Official report is that they suck. It is very painful, and the injection site remains sore for days afterwards. That being said, it is in’t unbearable, and I am still able to sit, sleep, and walk without much added trouble. If I have an injection in the morning, I am very tired for the rest of the day. Fortunately, living closer to my doctor means I get home quickly and can rest until it’s time to pick up my son from school.

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Back pocket ice pack in anticipation of butt injection of doom

I am definitely experiencing a worsening of some symptoms from the injections, as anticipated. I felt okay for a few days after my first injection, and then hit a wall on day 4. Physical and mental fatigue, joint pain, nerve pain, face droop – the whole shebang. My next injection was 5 days after the first, and that one really hit me two days later, which was yesterday. Yesterday was not a fun day. I felt completely terrible, and my son’s school was closed for a religious holiday. GREAT TIMING. It was horrible. The fatigue and fog felt like I was under water all day. Let’s just say there was a lot of tv viewing happening.

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Me, engulfed in herx misery after my wife came home and rescued me from parenting

Today I feel somewhat improved, but still not very good. Tomorrow is my next injection and IV nutrient infusion. This will be my first week with two injections. I have to admit, after the day I had yesterday, I am feeling a little bit of dread about my remaining 10 (Ten! TEN. Ten? TENNNNN.) injections.

I also had my neurology follow up today. It was a little awkward because it was with an Infectious Disease neurologist who believes that many people have long lingering effects from Lyme Disease (good), but who doesn’t believe in longer term antibiotic use for those patients. So…there was a disconnect there. She did however have a helpful recommendation for cognitive therapy. She said the she has seen great results in patients with neurological symptoms. You basically see a speech therapist and do different exercises that can help rebuild pathways in the brain that have been damaged.

As for my MRI results, she only had the print outs and needed the CDs (ugh…oops), so she couldn’t comment on my specifics, but reiterated what I already knew, which is that people can get lesions/inflammation of the brain for a whole host of reasons, only some of which are worrisome. I’ll get her the CDs, and we’ll go from there, but based on our review of my symptoms and my examination, it does not appear that there is anything to really worry about with regard to my brain. I am excited about the cognitive therapy and feel good about having something tangible to *do* to help care for my brain.

So that’s it for now. Two butt injections down, 10 to go, and an incredible amount of boxes to unpack, which pretty much seems never ending. One foot in front of the other.