I’m sure at least some of you have wondered, what’s a day with EDS like?
Well, for starters, it isn’t just EDS.
So here’s the laundry list of everything we know or suspect is wrong with me, suspected things italicized: EDS, Raynaud’s syndrome, migraines (both migraines with aura and cervicogenic migraines), nearsightedness, hiatal hernia, acid reflux, Irritable Bowel Syndrome (worse than the name implies), functional bladder disorder, chronic headaches, chronic pain (especially in the back), alpha wave intrusion (sleep problem), ideopathic insomnia (can’t sleep for unknown reasons), bipolar, panic attacks, autoimmune? hypothyroidism, asthma, sensitive skin, plantar fasciitis, fibromyalgia, night terrors, orthostatic intolerance (which causes fainting and near-fainting), chronic dehydration, temperature intolerance (both heat and cold), and of course all of the chronic injuries that go with EDS.
So right now, my day starts around 9:30, because that’s when I wake up. There’s a long story behind this – before I was diagnosed with alpha wave intrusions and started a medication for it, I slept in patches, waking up frequently. I’m not entirely certain if this waking easier and earlier is a permanent thing, but my doctors believe it may be, so I’m hopeful.
So at 9:30, I’m awake. I’m awake and I feel like I was in a car accident the day before – every part of me is stiff and painful, but especially my back, neck, and shoulders. It does not matter how I lay to sleep, I wake up this way. Sleeping in my bed minimizes it, but nothing makes it go away. Today, my forearms hurt from crochetting too much, in addition to the ‘usual’, and my left hip is far worse than usual. I’m also hungry, which eventually peels me out of bed. I go down the stairs, I eat, I drag my stiff, sore body back up the stairs, go to the bathroom and change the pad I have to wear because of incontinence problems, then to the bedroom, take my morning medications, and lay back down. There’s something wrong with my left hip, and has been since last night, but I think it’s just muscles overtightened – a chronic problem – and don’t think too much on it.
Around 10:30, I’m actually approaching ready to face the world…ish. So today, I went downstairs to work on a piece I’m crochetting – a stupid project for someone whose fingers dislocate – while waiting for my boyfriend to arrive home from his first errand of the day.
Around 11:00, we left for a trio of errands – picking up a recycling bin, going to Petsmart to get stuff for the upcoming service dog, and picking up an internet self-installation kit for our new place.
These errands, of course, led us a fair distance from home. Riding in a car is unfortunately one of the worst things for my back.
So we get the recycling bin, we walk around Petsmart a bit, and then we’re desperate for lunch and 20 minutes plus one errand away from home. I say hey, pizza! We aren’t in a part of town we’re familiar with, so we ask the boyfriend’s tomtom to find us food. One closed pizza place and one that doesn’t really look like a place we want to eat in later, and we had lunch at IHOP.
This was…not the best of ideas. You would think I’d know by now what I can and can’t eat, with all of my digestive problems, wouldn’t you? Well, the fact is, I can be very stupid about it, so here we are at 11:25 at night and I’m not sure if I’m still paying for lunch, if this nausea is related to back pain, or if it’s something else entirely. I think it’s a result of (stupid, stupid) eating something greasy and something involving chocolate (caffeine is bad for the digestive tract). I can get away with things, but it’s unpredictable – I’ve eaten this particular combination of things without problems more times than I could count, but obviously today wasn’t one of those times.
Now, the benches at IHOP? Well, they’re more comfortable for me than standard chairs, or hard benches, but they hit my back exactly wrong and still end up very uncomfortable. Between the driving, the walking with my hip not-quite-right, and the bench, I wasn’t feeling great, but I figured that picking up an installation pack should be quick, right?
Wrong. I wasn’t counting on Comcast’s…stellar… customer service. I don’t know how long I was in the car waiting for him, but I sang along with 3 songs before I got uncomfortable enough to give up on that, and I was there a while after.
Naturally, we were done just in time to end up in the start of my city’s ungodly early rush hour. How the hell can we have rush hour run as late as 10:00 AM and start up again at 3:00 PM?! And of course, on top of that, there’s an accident. Remember that bit where I wasn’t feeling all that hot BEFORE we got the installation kit?
So we get home. The boyfriend helps me remove my heavy knee braces. I go up…oh god…stairs…nnn…crawl. oh go bed now nnnnn. The braces leave my skin feeling like it’s been burned or abraded. It hasn’t been, but it’s that same focused, intense pain. I rub it, despite my hands hurting, because rubbing it helps. Unfortunately, it has to be exactly the right amount of pressure, or it adds to the pain, so my boyfriend cannot help with this.
I lay there for quite a while, just feeling exhausted. As it turns out, not exhausted enough to sleep. Great. So I can’t sleep, I can’t sit up, and I sure as hell can’t make it back down the stairs for a while. Welcome to my life – I spend a lot of time here. Probably the most unpleasant part of it, from my point of view. I wonder sometimes how you can be in this much pain from stupid things that aren’t life-threatening and don’t do any obvious damage to you. It’s here that I feel the most trapped by my life – I can’t even get on the computer, because I haven’t figured out a position where all of these things are true: the computer won’t overheat, I’m not looking down towards the laptop screen, I’m not reaching too far away from my body to type, the screen and my head are oriented the same way. So it’s me, and most of the time not even the boyfriend, because..well, there’s a lot of reasons, not the least of which is the fact that sometimes I am in too much pain to bear the movement that comes of having another person in the bed.
Today, I think it was mostly because he thought I was napping at that point, the secondary reason being that he was fighting to set up our internet and wireless. (I don’t want to give even a hint of an impression that he just abandons me there – he often keeps me company even when he can’t touch me, and checks on me when I’m just laying down but not sleeping. It’s far more likely that I kick him out of the bedroom than that he chooses to remove himself.)
So I eventually get up, and he’s tangling with things so I decide to start work on the painting that a friend of mine has commissioned.
But first, a pad of paper. Of course, I want the large pad, not the traditionally sized one, which has ended up…somewhere. I holler down the stairs at the boyfriend, who does not know where it is, but I have a suspicion…up to the third floor, where his office is, and yes, he put it on a shelf in there to keep it safe. Back down to the second floor, to my office/studio. Both, as I am a law student and an artist, and unwilling to head up to the third floor to do any variety of work I do often. And besides, when I am only part time at each of those at best, it seems insanely greedy to want more than one room for my work!
I sketch. Or rather, I upsize my sketch. The painting is to be a 24×36. The original sketch is a 9×12. Not only is this a huge gap in size, it’s not the same proportions – 2/3 vs 3/4. So I re-sketch the piece onto a 12×18 pad of paper – the right proportion, which lets me play with some of the details of it a little, while remaining true to the original vision that the patron has agreed to. In the end, I think I prefer the new version, and I think he may as well.
That done, to starting the painting! But first, I had to find the canvas. We moved over the labor day weekend, and needless to say the house is far from sorted. The boyfriend remembered, he’d been very careful to take my canvases up to the third story room that serves as his office, as fewer things were going into that room and he could keep them protected there. So up I went, and looked, and indeed most of my canvases were there. But not this one – a much larger canvas than my usual work. I went down one flight of stairs to look in my office again, and then hollered at him to see if he knew where it was. We both went back up to the third story, and he found it – in the fourth bedroom, the one that we are hoping to let out for the summer to get a little more income.
So back down to the second story to my office/studio.
I believe at that point I laid down again; up and down and up and down is bad, but when your hip is out, it becomes insane. I think it was at this point that the boyfriend came in to check on me, and I mentioned my hip being very painful. I realized then that d’oh, it might not be subluxed badly enough to make it impossible to walk on, but it could be slightly subluxed! A little wriggle (of the sort you learn when your hips sublux) and SNAP it was back in. The boyfriend looked visibly startled and commented on it; it was a loud enough snap that he had heard it clearly with his head a good 10′ or so from my hip.
I got up to start on the painting, then. I work in acrylic, which tends to mean that you must paint quickly, and can’t leave a layer until it is done, unless you want to paint corrections/alterations/shading on it once it has dried. As I was painting the undercoat needed for the background of this piece, I needed to finish it all at once, which set me to swearing when I realized that the canvas was not as well prepared as the brand I usually buy, and was requiring a lot more work than it ought to have. A painting that large, on a desk rather than a proper drafting table, means a lot of reaching and bending the back. In other words, this was a stupid, thoughtless thing for me to be doing today. However, when you live with this sort of thing, you kind of get used to ignoring the pain for now and paying for it later.
I finished the first coat of the ground and started rinsing out brush and palatte in the bathroom sink, utterly unwilling to go downstairs to use the kitchen sink. The boyfriend was coming up the stairs, I don’t remember why. I asked him to finish cleaning the palatte, which needed scraping, as I NEEDED to lay down. So he worked on cleaning while I rested – an unfortunately frequent turn of events, and something I am particularly sensitive and ashamed of: I play, and he cleans up the messes I make. It’s his choice as much as mine; he’d prefer I spend my energy on things I enjoy.
The rest of the day was up by turns, back down by turns. Up for only 30 minutes at a time, roughly. Rebellious stomach made dinner just…not happen. When your stomach problems mean that in a flare you cannot have acidic foods, greasy/fatty foods, spicy foods, or raw vegetables, it becomes hard to eat. When you add that my stomach problems are sliding out of control again, it means more than a few abbrogated or missed meals. The boyfriend ate without me tonight, and my dinner is still sitting in the fridge.
Very late in the day, the boyfriend remembered that part of the point of the errands today were the fact that I needed to print some sensitive documents, so we finally got that done, far too late for them to go in the mail. The poor man had to run up to his 3rd floor office and get the print-outs, as that is the only working printer in the house. (for the record, his office is up there so that our bedroom and my office can be a floor lower)
I poked around the web, answered emails, read people’s journals, and ohgod bathroom now. I have trouble getting people to understand how my gastro-intestinal and urinary problems play out. You see, I don’t get the kind of sensation most people get when their bladder or bowel is filling. I used to get that. But now, I don’t have ANY sensation most of the time until I am painfully in need of a bathroom, which usually means spasms in the bladder or bowel as well.
So I continue online, and the boyfriend is reading online, too. He went upstairs to take a shower, as I read blogs, and it occurred to me that I should do a post like this. He came back down, wanting to head up and cuddle, but was (as always) understanding when I said I had this idea…
I began to write this, and as I noted the time up near the start of this post, I realized that I was an hour and a half late taking my night medications, which explained why I’d had an increasingly bad headache for some time. You see, my night medications include my main painkiller, a 24 hour drug. It starts wearing off a bit about an hour before my medication time, so it’s easy for me to miss it without a timer set. With all the times I have to remember to do things, I wish I had something small and portable I could set many different alarms on – one for each of the times I need medications (a minimum of 4), reminders to move so I won’t stiffen up too much, so on.
As I wrote this, I had another ohgod bathroom moment, which meant (joy) a dash up the steep stairs of my 100+ year old house. I’m sure that’s exactly what my joints, especially my back, needed.
So here we are. It’s 12:20. My stomach has finally emptied itself enough that ‘hungry’ has won out over ‘roiling’. If I eat and then go to bed I wake up retching and coughing from the reflux (which is probably because of the hiatal hernia – a condition where a portion of the stomach is above the diaphram, which has very limited treatment options). If I don’t eat, I don’t sleep, because I’ve never learned to ignore the grumbling and twisting of my stomach. The medications have probably begun kicking in, but the left side of my head is throbbing (god I hope that isn’t a migraine), my back is…I don’t want to think about my back. It obviously wants me to think about it, as the right side just started spasming. I’ve taken a total of about 20 pills today, which is enough to make me capable of leaving the house for 3 hours. The boyfriend, a morning person, gave up on staying awake almost half an hour ago and went to bed. It feels likely that my insomnia is in full swing again tonight, bad enough that I doubt one of my few, precious sleep pills will help, so I don’t want to waste one.
So there. That’s a day in the life. I don’t know how well I described the period in the afternoon and evening where I was only up for about 30 minutes before needing to lay down for the same amount of time. I haven’t included the people staring at my forearm crutches, or the concerned way the boyfriend looks at me when I appear tired or pained. I hardly mentioned how often I felt nauseated, or how often parts of me twinged.
And now, I’m going to call it a night. I’m going to wander into the kitchen and find something small to eat, quite possibly some ice cream because the cream counters the acid somewhat and the fat digests slowly so I am less likely to be awakened by my hunger before when I ought to wake up.