It is 4:20am and I am writing because I have been woken up with pain, again; this has happened the last three nights. I am tired, and I am sad, and I miss days without pain like this. And the thing is, I am used to chronic pain. I have had it since I was 18 and was first diagnosed with the autoimmune disease that makes illnesses like Lyme and anaplasmosis and shingles so much worse for me: agammaglobulinemia. The constant, chronic pain that I have learned to live with is in my hips and my hands. But this, this is different. I don’t know exactly how to describe it save it is a burning feeling emanating from the bones of my ribcage, lower back, and abdomen, as if there is something slow burning there, like charcoal. It wakes me up and begs for relief. I took one tylenol and two iibuprofen per instructions, and now I wait, as I took 2 gabapentin before I went to sleep.

The doctor’s assistant told me on Friday the pain could be the pain of the bacterial “die off” which I find gross and rude (on the part of the bacteria). My tummy is distended and I have had a stomach ache now everyday for three weeks. I can’t put any pressure on my stomach at all without feeling a lot of overwhelming pain. I feel terrible about this as it means it is hard to hold my husband’s body at night, and hard for him to hold mine, without causing discomfort. Pain is alienating on top of being sad and frustrating.

This is a short entry, written in the early hours of a Sunday morning. I do not know what to do. I surrender to this, but it does me no good as the surrender is simply because I am lost to this pain and lost to a real solution to it. During the day, I can manage it with medication, but at night, I try to sleep. For the first three weeks, it was like my body turned off at night and so did the pain, but no more. I hope we are reaching the end of this, if not, I am worried that we will have to do something different; more medication, different medication, more impactful drugs than what I want to do.

I said this the other day and still think it today; I am so thankful for modern medicine as if we were in the olden days without antibiotics and pain medication. I would be lost. But then I read that the first case of anaplasmosis was diagnosed in 1993 and wasn’t even fully identified til 2003, so it didn’t even exist in the olden days, thank god. I just googled Lyme disease and it has only been around since 1975 so, big whoop, these diseases are of the modern age! I am sure though there are lots of diseases that are hundreds of years old and are miserable without medication.

I am hoping the meds kick in so I can go back to sleep. This is a sad moment, but hopefully it is just a moment that will pass and I will remember it but not dwell on it.