So much is expected of Christmas posts when you have a publicized “problem.” Everyone is curious about how you coped, or how things were altered because of it. As an advocate for the very misunderstood illnesses I live with, perhaps some might expect me to explain all that I wasn’t able to do–to drive home the message of just how bad these illnesses are–like many others write about. Maybe it could raise awareness to the fact that very little is being done to stop it from happening to your children, or your best friend, or even you? Like a TV commercial for the ASPCA about all the animals that are freezing to death while yours are inside, warm, I see a lot of these types of things related to M.E. and Lyme disease around this time of year. Such as “humorous” Christmas song rewrites, changing the words to suit the various symptoms of the disease. (While everyone else if off doing those things, I’m doing this…)
I can’t think badly of anyone using this time of year for these purposes. I know why people make those posts, and I know the reason why some find a strange sort of comfort in them… But I don’t.
Perhaps I owe it to realizing how bad things could be, given my situation, and thus appreciating how they aren’t. Perhaps I owe it to being reminded daily of how special even the simple things are, or that I try to consciously think about that even when things are going better than usual. Or maybe I’m just naive and give people too much credit for understanding that these diseases do alter every single aspect of how we celebrate any special event, without me having to bring attention to that fact over and over again… Do people realize? Maybe I give others too much credit for knowing that.
My Christmas was wonderful. I feel like I was given a sort of early Christmas gift, even. First off, I was home and not in the hospital (and.. well, alive), and I’m making slow but steady improvement. But also, my candidiasis problem is gone… Like, completely. So I could eat whatever I wanted, and enjoy the once-a-year holiday cookies, et cetera. No more food restrictions. No more feeling like the next thing I eat could upset whatever delicate balance my body was striving (and failing) to attain. Now, granted I’ll still be eating like a diabetic because it’s just plain healthier no matter how you look at it, but… It’s nice knowing I can eat a normal cookie every now and then and it won’t cause long-lasting harm. ♥ Now I shall simply continue maintence therapy, consisting of alternating Nystatin and Candex every week, to keep things staying normal. Next month I should be able to resume antibiotics, after the candida culture results come back.
I’ve made friends with my wheelchair, now. It was hard for my family and I to take/witness that first trip, but after the whole hospital thing, instead of it being a symbol of how bad things had gotten, it was a great thing to be wheeling me out of my room! “Oh look, she’s good enough for a wheelchair ride to the kitchen!” sort of thing. So now we’ve pretty much become accustomed to it, taking me to the living room for tea or whatnot. My niece thinks it’s hilarious the way I move my feet “like a mouse” when scooting myself across the kitchen…
I’m still battling my stubbornness however, because of course, it’s me. Sometimes I get stuck in the kitchen or the living room because I misjudged my ability level. Which somehow makes me feel like I’ve failed, because they’re just.. what, twelve meters away? You don’t want to think you need help walking forty feet, and it’s so much easier to walk there than to maneuver the wheelchair about, or ask someone to take you there… Especially if you could have done it half-an-hour ago, but suddenly you can’t? How do you keep up with that? But I’ll learn. I’m bound to get stuck many more times, but I’ll learn. And hopefully I’ll do it before I harm myself, because nothing would make me feel more dumb than being sick actually because of something I did (or didn’t do).
As of yesterday I feel I’ve recovered enough from the hospital ordeal, so I started my daily herb and supplement regimen. Which would be:
- 500 mg Olive leaf extract, twice a day
- 1 gram of Vitamin C, twice a day
- Aloe vera gel capsule, twice a day
- 100 mg Ubiquinol (active form of Co Q-10), daily
- 1,000 mg L-carnitine (fumurate), daily
- Vitamin D3 (I’m not deficient, but I get no sunlight), daily
- Calcium, magnesium, and zinc supplement, daily
Anything else I take depends upon the day, such as the Candex or Nystatin or Grapefruit seed extract. I’m going to add the Houttuynia back later, but I wanted to trial run everything else before I start attacking the bartonella again. (Speaking of: My bart symptoms are still–perhaps even increasingly so–very mild… I’m wondering if I should be happy they’re going away, or scared that they may jump out at me again when I treat the Lyme disease. It’s anyone’s guess, but my family and friends do appreciate me not yelling at them quite so much in a bart-induced rage!) I started the Ubiquinol and L-carnitine back on Christmas, because of all the activity. Needless to say, it’s been very helpful, though of course it doesn’t mean the crash still won’t happen…
As for how I’ve been feeling since my last update (besides the obviously expected things): For several days after “the hospital incident,” I was extremely dizzy, to a ridiculous level. It’s an unnerving dizziness that feels like it’s coming from inside your head? It’s difficult to describe. I was also horribly fatigued, but both of those things have left after ibuprofen and a lot of sleep + rest. I wore earplugs almost constantly up until yesterday. (Which made it a little easier to listen to music, actually… Yes, with the earplugs still in.) I’m not sure if my extreme sensitivity to light and sound was due to the M.E. or other infections; an overactive nervous system was one of the things that became more frequent before I started treatment.
On December 23rd I was a little Lyme-y; my upper spine was hurting and my arms would randomly go numb and weak… Mild fever… Also VERY thirsty… But that was basically it! Later that night we actually took a short car ride out to see the Christmas lights.
Christmas night I started having arrhythmias and accompanying dizzy spells… Which was startling because, it was the same type of dizzy spell that has been happening off and on the past few weeks. Now I’m wondering if this “dizzy feeling inside my head” could actually be coming from my heart? I have no idea, but whatever the cause, palpitations + dizzy spells last night basically meant, I’d had too much exertion, and needed to stop what I was doing, and rest. Immediately. So I did.
It should go without saying that now, after the (albeit mild) Christmas activity, I’m having increased muscule fatigability and weakness due to the crash. My legs are not wanting to work with me, my arms give out very rapidly, and.. today I had the first non-bath since before I initiatially starting taking antibiotics, when I was too ill to properly bathe and had to rely on.. I guess you call them sponge baths? When I was in the ER they sent us home with some microwavable bath cloths, so it wasn’t entirely unpleasant, actually! The shock factor has worn off, since it’s not the first time that “it’s come to this.” I can sit up, so Mum washed my hair in the kitchen sink, with the faucet sprayer! Haha. Our inside dogs looked onward, very concerned as to why their owner was suddenly taking over their bathplace.
But yes, I can be upright, so I’m happy to say at least my POTS-related symptoms are improved. I’m just waiting on my muscles to recover, and be able to tolerate more. Tomorrow we are planning an outing… Given the state of my crash I’m not entirely convinced it’s a smart idea, but we’ll see how I feel tomorrow. I may not be able to use my arms for much, and my legs are not happy, but I can be upright, and I can wear earplugs as I always do when I’m “out.” I think I could do it… Oh, and since being back on my herbs the dystonia symptoms are returning in the evenings. I didn’t expect it to happen so soon!
And finally, all of the tests I had run from my endocrinologist, were normal. All.. what, eleven of them?.. including the ACTH stimulation test, so I do not have adrenal insufficiency. I’m.. glad, in a way, because like I said, had I that disorder I would not have been able to treat it without risking an imminent decline. But I’m also not glad, because it just means yet again that nothing else was wrong, that nothing else was contributing to my body’s dysfunction except what I already have… The doctor has mailed me copies of all the results and I’m waiting for them.
♥ a rainbow at night