I was scrolling back through recent posts, looking for something, and I got drawn into reading a bit here and a bit there. And all I could think was, “For goodness sake. Out with it woman! Come on now!” How ridiculous it must be for you as the reader to be subjected to all of these posts with their little cryptic hints and glimpses. So I gave myself a stern talking to in which I told myself to either explain the situation or shut up already. In truth I didn’t mean to mention any of this here at all, it just somehow seeped into my writing unbidden.
My issues with sharing this particular subject are that I don’t think I can succinctly explain the situation. There are matters of privacy and stories that aren’t really mine to tell. And it’s just depressing, which is not what you come here for and not what I want out of this space.
The very short version is that one of our children has been quite ill, for a long time now. Over a year now struggling with various issues, with the last six months being desperately intense. Thousands upon thousands of dollars worth of tests and treatments have not yielded much in the way of answers or improvement. We know that Lyme Disease is a factor. We know that EDS is probably contributing to the situation. We know that there are some heart issues that may or may not have been triggered by Lyme. But on the over-all picture, including why the logical treatments aren’t really having the desired effects, we’re still somewhat in the dark.
In the last 14 months, quite apart from on-going EDS/POTS issues, I’ve had two cases of lyme/babesiosis myself (If you’ve not heard of it, babesiosis is tons of fun. It’s basically like having malaria). Steve who is usually a rock health-wise has been dealing with his own complicated medical issues, also still unresolved. That’s not even counting the constant barrage of minor issues that are bound to come up in a house full of seven people.
All of this comes after several years in a row of what felt like one endless health crisis after another. Just to give you a feel, some of the highlights from last year alone included a stroke scare, worries over a potential aneurysm, three herniated discs, three members of the family requiring extensive cardiac work ups, followed by a recommendation of heart surgery for one, a sleep apnea diagnosis, concerns about a potential hole developing in a major blood vessel in my brain, and grounds for a dementia screening when a particularly fierce strain of Lyme went to my brain and I had trouble remembering what a month even was, much less what month it was. Just to name a few. Folks, I’m fried. We all are. It’s just too, too much. And it’s been too, too much for too, too long.
What this means right now is that for three-four of the last six months I’ve had a child who can do next to nothing during the day and who is up literally all night, every night, in pain. And by all night I mean until 5, 6, 7 am or later. With the months on either end featuring maybe a good week or two where things seemed like they were getting back on track, followed by a decline ending right back where we started. As the sole night time parent this means I’ve been up all night on every occasion. Thankfully, Steve is able to take the early morning shift, from 3:30 or so on, on the weekends. But with four other children, I can’t exactly sleep away the weekdays. I’ve been tied to home, deprived of sleep, driven to desperation and frankly on the verge of collapse.
We’re in a “better” period just now. Where I’m getting that last child off to bed once and for all by between 12:30 and 2 most nights. With the child having a degree of wellness during the daytime that we can work with. That picture above was taken just before two in the morning, when I finally had a chance to sit down to correct the day’s school work and prepare for, well, later that same, seemingly endless, morning.
I’ve honestly been very anxious, depressed and over-whelmed within this whole situation, though I am trying hard to fight it.
All the knitting and sewing and “where does she find the time?” projects? This is what I do because I need to be near by, I need to force myself to stay awake, and I just don’t have the strength or brain power to do anything more. And while my little projects are immensely comforting to me, I assure you I would far prefer a well child, a bit ‘o peace of mind and a good night’s sleep.