Memorial Day weekend is my sickiversary. Eight years today.
Things are looking up, though – I think I’m doing better now than any point since the end of 2007. Among the indications of improvement:
- I’ve been playing Words With Friends for a couple months now. This requires more cognitive power than I had for a long time – between word-making and strategy, it would make my brain hurt and make me very tired very quickly. But now it seems to be easier, and it’s really enjoyable to have another way to interact with some of my friends.
- I’ve felt well enough to have short visits with friends who’ve come through town. Five separate people have stopped by in the last six months for anywhere from an hour to overnight, and while it’s always been a little wearing, I’ve dealt with it without a major downturn.
- I’m walking better. For a long time, my muscle wasting was such that I got around with a sort of tottery gate – it felt more like using stilts, swinging from one point to another than actually walking. But now my gait is edging more toward normal, and I find I can negotiate stepping up or down without having to grab onto something and control myself using my arms. I would also swear that my calf muscles are looking a bit more developed. Nowhere near normal, mind you, but not quite as skeletal as they are in the last pic in this entry.
- I seem to have more arm strength. This has been an issue since early on – I had already lost a lot of upper body strength before I was more than moderately ill. It’s easier for me to lift and maneuver objects lately. No Olympic records here, either – I’m talking about things like handling a watering can, or getting a large bowl out of a cupboard – but it’s enough that it makes a real difference in what I can do.
- I’m able to get up more times during the day, and I’m able to stay up for longer when I do get up. I still have to watch it, but I don’t find the blood settling into my legs in 30 seconds like it used to – instead, I find myself getting a little faint instead of feeling the characteristic pain in my legs that the blood settling there produces.
- A couple months ago, I started to make my own breakfast. This either involves measuring out muesli, sitting down to cut up dried fruit, and remaining sitting up while the whole thing gets nuked for a few minutes, then getting out the soymilk and pouring some in, or getting out a cutting board and knife, washing and chopping fresh fruit, pouring a bowl of cereal and putting some soymilk into a little pitcher and carrying everything out to my dayroom. Sometimes I realize I’ve forgotten my pills and I have to go back to the other end of the kitchen to fetch them. This might not sound like much to a healthy person, but for the last few years, it might as well have been a marathon.
- Likewise, I’ve started a fair number of recipes for Chimp. This involves 1. gathering ingredients, 2. gathering implements 3. chopping, mixing, etc. Sometimes I only get to 1. or 2. before I have to stop, but I have actually made cornbread all the way through once, and on separate occasions I’ve left him with biscuits, flatbread, or cookies to roll or portion out and bake. Just today, I helped him fine-tune a big batch of pesto from the parsley that overwintered in our garden.
- This spring, I’ve expanded my deck railing garden quite a bit, and I’ve been able to do more of its care. I’ve loosened and mixed dirt with a spade, filled pots, planted seeds, mixed up extremely stinky fish fertilizer (I know, I know, I’m a vegetarian; I plead that the smell of standard fertilizer is one of those things that made me feel sick even before I became ill. But as Chimp puts it, “I don’t think they harmed the fish; clearly by the smell of this stuff they just made them poop in a bottle”), watered (including managing lifting a watering can above my waist sometimes), and pinched things back. Last summer all I could do was go out and look at things, and do a bit of pinching.
- The big development garden-wise is that I’ve begun to be able to manage to get out to the raised beds and the bed along our deck out in the yard. It means I have to go down some small steps and walk about 20 feet total, I think. We have four raised beds – or I should say, we’re about to have six, because Chimp has built two more. Out there, I’ve watered, harvested lettuce, cut down the overwintered parsley that was starting to go to seed, and picked snap peas.
- The other big development is that I’ve finally seen all the upstairs rooms in person. I had made it up the stairs a few times previously – a couple of those times because Chimp had forgotten to turn off his alarm before he left the house – but up until recently, I hadn’t seen our guest room or the upstairs bathroom in the flesh. But now I have. It’s surprising how different they look than the pictures. Unfortunately now I want to redo the upstairs bathroom more than ever. By the time we get the budget together, 80s smoked glass and brass-toned shower doors will probably come back in. Sigh. There are parts of the basement I still haven’t seen, though, so I have the excitement of the laundry room to look forward to.
I don’t know what to attribute all of this to – is it the lingering effects of the short course of GcMAF, the continued Cheney Protocol, sustained good sleep, or just my body mysteriously turning things in the right direction? I can’t really say, but I’m grateful for every bit of it. I still spend about 98% of my time lying down, so I wouldn’t call myself “housebound” rather than “bedridden” yet, and I try not to ever assume that wherever I am, that I’m going to see sustained improvement from that point. But it is wonderful to have capabilities now that I haven’t had for a long time.