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I was going to work on a page about the Lyme disease controversy which incorporated some of the discussion about Embers et al Rhesus macaque study on the Lyme Policy Wonk blog or post something about how Viral Genetics' chronic Lyme disease treatment is supposed to work.
But I've decided for now to set that aside because now I have something to say about something more personal.
Recently, someone mentioned me online in a Lyme disease support group forum and stated that my ability to knock out 1,000 word rebuttals and look up all this research made other people with Lyme disease look bad.
I took exception to that statement, and disagreed with it.
It wasn't all that long ago that I wasn't even able to write and do research, and it wasn't until I had been treated for Babesia by my LLMD that I began to see a difference in how quickly my mind worked.
When this change took place, I wanted to take advantage of it.
I felt compelled to write and do research because I finally could do so again and I was afraid I would relapse again any day. I feared I would return to some muddy primordial brain soup that couldn't string other people's sentences together and would put down a book after two minutes of frustrated repetition that looked like reading but really wasn't.
Relapse when? Who knows. I'm still afraid of my old symptoms returning and losing ground. Relapse happened to Pamela Weintraub. Relapse happened to others. And I've already relapsed once from about 85% of my original baseline.
I was so close. So, so close to feeling normal again. And then I lost what I had gained.
I'm not 100% now and I'm not at 85% again - however, I'm still better off than I was over a year ago.
This writing I do here and other places online? It isn't a game to me. At times it has been a genuine challenge. I've done it while having headaches and muscle pain and joint swelling. I've done it in the middle of episodes of fatigue and to avoid standing up due to vertigo. I've done it at 3 am. I've done it after waking up after being crashed out for hours because I'd been in the ER all night.
It's true that I do a lot of research. And it's not hard to do because it's what I used to do for a living. To some degree, it's force of habit and was easy to return to once I was able to understand what I read again. And I'm trying to reeducate myself and learn new things so that I have a better understanding of what I write and share with you.
But just because I do this does not mean I am capable of returning to my old job. Even if I can read and write, my health is so unstable that employment has not been possible during this time. Employment requires stability.
My brain - while functioning in some ways - is not fully running on all cylinders in others. It's just not obvious how it isn't to someone who isn't living life inside my skin every day.
Care for the rest of me outside my brain can be time consuming. Case in point: I just looked on my calendar for February to see how many appointments I had. If you add it all up, I've had 5 appointments for different health problems - either to follow up on an already existing condition or to check up on a new one.
Many if not most of my friends without Lyme disease haven't seen a doctor within the past year.
That used to be me. Not any more.
When it comes to blogging online, I think it's a great thing: In some small way, this has been my slice of "normal". No one could see how impaired I have been and how bad things can be.
Perversely, having my capability for research and writing online being pointed out by a near-total stranger is satisfying: It means that I pass as being more normal than I truly am to someone in a world where the dominant paradigm of normal = healthy - even when I'm part of a community where it's normal to not be healthy and one faces challenges daily. But it can be demoralizing and confusing to read the accusation attached to it that my doing my best is somehow reflecting poorly on others.
I'm not doing research and writing about Lyme disease to make other patients look bad. I've been doing it because it's one of the few things I've been capable of doing from my sofa during the past year.
I've been doing it because I want to learn as much as I can about this disease and topics related to it.
I've been doing it because maybe what I learn and share with others can help them, somehow, in some small way.
I've been doing it to educate people about Lyme disease and other tickborne illnesses.
I've also done it because it keeps me saner than I otherwise might be after all I have been through. It distracts me. It gives me a goal to live for other than to drag myself through another appointment, another blood draw, and another tedious stack of paperwork.
I've been trying to do something positive with the situation I've been placed in against my will, and implied assumptions about my health and reasons for writing long rebuttals or doing research are about as useful to hear as hearing a statement such as "those with chronic Lyme disease only suffer from "the aches and pains of daily living" is useful to hear: It isn't.
And when it boils down to it, a remark about my being a bad example for knocking out long posts online doesn't even make sense to anyone when so many other patients - including ones with other medical conditions which are disabling - spend at least as much time reading, writing, and posting online as I do.
If I've actually improved - if I've actually been doing better than I used to be doing - that is a good thing. When anyone else shares the news that they are doing better, I tell them I'm happy for them. I don't tell them they set a bad example. That doesn't make sense.
A lot of us struggling with disabilities are in the same boat. Former lives are broken and may not come back together the same way again. It sucks, all the way around.
I don't know what the future holds.
In the meantime, though, I am going to make good use of this time to research and write if I can, and do the best I can do at what I'm capable of doing.
How can anyone salvage something out of this situation? You do the best you can.
I encourage you to do likewise. Life is short.
