Rollercoaster of #lyme #chroniclife #spoonieproblems

I was feeling pretty good last night. I had more energy than I’ve had in a while. I got a lot done yesterday, while still being careful to horde my spoons. I did go to two grocery stores, but I was laser focused and did not dwadle. I got out as fast as I could. I did go to the doctor for my glutathione IV for brain fog and detox, and I let myself chat with the staff a bit in a relaxing way. When I got home I did not clean the kitchen, but sat down and watched a movie. I did the dishes later. I took all my meds yesterday, the same meds I always take. But when I woke up this morning, I woke up with terrible vertigo. I’ve almost fallen several times. If I move my head at all, I feel like I am at the top of a very huge tree – up at the spindly whispy part that is careening back and forth in the wind. I have never had vertigo before as a symptom. Most spoonies know that game – what caused this symptom? Was it the eggs I tested for the first time yesterday (elimination diet)? Was it the new pillow (some residual chemicals)? Or is it the lyme, just burrowing deeper into my brain? There is no way to know really. Just have to keep moving forward. I will stop eating eggs, and use my old pillow again, and then try them again one at a time.

I did find out some VERY interesting news from my mom this week. She asked how long I have had lyme – I was diagnosed 4 months ago, but I have obviously had it for decades. I told her it was at least twenty years, probably more (so at least from my late teens). She asked if I could have had it as a child, and I said oh yes very likely. She then went on to tell me that I used to have ticks all the time when I was a kid, because we lived in a rural area of California. She said that when I was just an infant, she was carrying me in one of those pouch thingys in a store, and a friend of hers came up to me and said, “your baby has a tick!” and pulled it off of me. She said that was the first time, and that I got them a LOT after that. She said she was too squeamish to do it herself, and so my dad would always pull them off of me. Apparently it was a very common thing and happened all the time.

My internal response was interesting. I had a huge flood of relief that I am NOT crazy. All the things I have struggled with my entire life could possibly be explained by lyme. I have had multiple food allergies since I started on solid food. I felt tired and lethargic most of my childhood – some of my family were super judgemental about the fact that I was “lazy” and didn’t want to play sports, and that I was a bit overweight (weight gain or loss is another lyme symptom). My first suicidal thought was when I was nine. I was very angry a lot, or very depressed. I had ADHD. All of these are potential symptoms of lyme.

I can’t prove that it was lyme, but just having the possibility made me feel relief. Like it justified things. Like it proved that I wasn’t just lazy, stupid, weak, useless, crazy – which is how I felt most of my life, particularly with my family.

But I have a real problem with this reaction. It doesn’t matter WHY I struggled with those things. I should be able to have compassion for myself no matter what. To not take on the judgement and disappointment of others no matter what. And what if I never got diagnosed with lyme? Aren’t I just as deserving of the compassion and understanding no matter what the medical establishment says? I think I give WAY too much power to authorities, even in the midst of fighting against that. I think I need to learn to just let go, to not be so attached. It is not easy to get to that place, but I think it is essential not just for healing but for my long term happiness as a creature on this planet and in this vast universe.

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