Sunday was stressful. Unavoidable, unplanned, stressful. Not too great in the health department to start with, raging bartonella flare and all, but of course stress makes anything worse, and there was a lot of it, so. I listened to music, was in bed, and did not move. I don’t think I saw past my hallway. The rest was needed, though.
You know you have M.E. when you do not move all day, and actually feel more energetic by the end of it. I sat up and painted my own nails, and didn’t even have to lean against anything! I’m thinking of this in comparison to Fibromyalgia, where if you lied in bed for a day, you’d mostly not be able to move, or depression, where you’d feel worse after all the not-moving and/or have further lost any motivation to do so. There are some illnesses where you have to get up and be active and stay mobile to facilitate treatment. Fibromyalgia, as I said, is one. Exercise is also crucial for the recovery of Lyme disease, if one is at that level… I feel a need to mention YES I KNOW this isn’t possible for everyone; please don’t hate-comment me. The presence of coinfections and the overall level of severity plays a huge role, as immune activation that occurs with the activity will cause a temporary worsening of symptoms. But in general, the moment you can exercise without hurting yourself, you must. That is completely not the case with M.E.
And this is the point where I want to ramble about how cruel and indescribeable the Lancet’s recent “study” is on cognitive behavioral and exericise therapy with “CFS”… You know, the “CFS” study that probably didn’t include even a SINGLE person with actual Myalgic Encephalomyelitis, and yet whose results will attempt to be applied to us anyway? Which would ultimately destroy us? Yeah, that one. How long before they stop grouping CFS and M.E. together? Will they wait until someone drops dead in front of their feet? Ah… But I won’t ramble more, because that will be stressful, and I’ve had enough of that. There are others who can tell you all about how wrong it is… Ugh.
Sunday/two nights ago/the 20th, although I had felt better after all the not-moving, that didn’t change the fact that I still had other things going on. I got a migraine that day, and woke up on the brink of dehydration. That night, I became spontaneously sleepy, and then un-sleepy, repeatedly. It was bizarre. Eventually I recognized it was my heart rhythm, which was arrhythmic and slipping into random bouts of brachycardia. As my heart beat slowed (which is incredibly rare for me!) my oxygen levels began to drop. At first this caused sleepiness, but then I started having terrible dystonia. I had to plug up to the oxygen machine, which I was so thankful to have, particularly at that time. After a few hours my heart rhythm stabilized. I suppose being Lyme-y, during a bartonella flare, and waking up dehydrated, isn’t a very good mix for your heart rhythms!
Yesterday.. hmm.. I’m not sure I remember much about it, aside from a lot of rest and feeling very sleepy. In the first part of the day, I rode with my mother in my car. We had the windows down and it felt fabulous. It was a beautiful day to be out and.. well, I don’t think I’ve been anywhere past the front porch since the 3rd! I’m trying to arrange a wheelchair ride through the park soon. But not this week. This week I’m on high alert because of what my symptoms have been doing, as I think I mentioned. I did and still continue to cough + have random stabbing pains in my lungs that prevent me from fully inhaling. If I make it through Thursday and Friday without any (seemingly but notso-) sporadic hospitalizations, we’ll be in the clear.
Today was another one of those “take antibiotics and experience a crazy herx” episodes. My left-sided symptoms were exacerbated upon waking–left leg and eventually left side of face went numb–and I had tremors everywhere after the Doxy and Rifampin. I could not stop shaking. I’m better now, of course. The “air hunger” has died down considerably, and I’m thinking my Lyme week is over, now. All I’m concerned about–especially with this previous brush with dehydration–is what’s to come by the end of the week. I’m staying extra-hydrated to try and prevent whatever I can. If it worked in November, perhaps it will work for me again, if this month is indeed to be another one of “those.”
Ah, I’m quite hungry now, so I’m going to go eat! :)
♥ a rainbow at night