Gotta Laugh

It’s like being hit by a load of bricks and then run over by a car.

by Veronica on July 22, 2010

in Blogging, Ehlers Danlos Syndrome, Gotta Laugh, Headfuck

Yesterday, we had a Paeds appointment for Isaac. Nothing major, just a touch base kind of thing.

However.

The kids woke up at 9.30am, 40 minutes before we needed to walk out of our door.

Okay, we can do this I thought, as I bustled around getting ready for a quick shower – only, when I turned on the water, nothing happened.

Our pipes – were frozen solid.

A fortnight or so ago, to prevent the pipes from freezing again, I’d asked Nathan to wrap insulation around the pipes to protect them. He grumbled, but he did it. Unfortunately, it had gotten so cold that everything had frozen despite it.

I wavered between going to the appointment, or cancelling at the last minute and decided that even without showers, we really needed to touch base. So a quick baby wipe bath later (ugh!) and a frantic dash to get the kids ready, we were on our way.

Only to run into every. single. set. of roadworks between here and the city.

By the time we were reaching the outskirts of Hobart, I was getting very ill and preparing to vomit into a book depository envelope. I opened the windows wide, let in the freezing air, took 2 pramin and hoped I wouldn’t have to throw up.

We parked, just as my nausea abated and I got the shakes. I know once I start to rattle (normally hard enough to make my bedding fall off me if I’m at home) that I’m not going to vomit. Power walking to the hospital, 20 minutes late, I’m not sure what Isaac thought was happening as I held him tightly and shook around everything.

Unfortunately, once I’ve gone through the nausea/feel better/shakes thing, the next step on the agenda is bone crippling exhaustion.

I was a mess.

We made it through the appointment, however, the drive home was less than fun as I huddled in a small ball in my seat, shaking with exhaustion and wishing I could just teleport home, instead of having to put up with 50 minutes worth of driving + stops for petrol and stuff.

Ugh.

There are huge gaps in my memory of the drive and that’s probably the best thing.

Once home, I collapsed into bed with my feet propped up on pillows (the nausea was likely a huge blood pressure dip) and fell asleep, despite Isaac tucked under my chin and trying to poke my eyes out. I was just that exhausted. It hit me like a ton of bricks.

2 hours later, I woke up, still exhausted and dragged myself out of bed. Nathan had cleaned the house and was in the middle of making dinner. Yay Nathan!

Today, I feel much better – it’s sunny outside which helps and I slept for 8 hours straight.

However, I know the exhaustion is lurking still. The Cymbalta, while working amazingly for anxiety, made me rather manic. Which means I used up all my energy for the next month, rushing around like a mad person, getting things done.

I’ve stopped the cymbalta now (god, I feel like a see saw, I write a post saying ‘It works! It’s brilliant!’ and then another going ‘Ugh, side effects, sort of giving me the shits’ and then another saying ‘I’ve stopped the drug, the side effects were making me sicker than the original thing we were treating’. My body – not fantastic at dealing with meds) and I think yesterday was part of the backlash of stopping.

At the very least, I’ve stopped being so nauseous all the time – instead it just comes in big waves like normal, my skin is clearing up – it just needs to heal a little faster, and my anxiety, well, I can deal with that on my own, better than I can cope without orgasms and food.

So yeah, the Cymbalta trial ended sort of badly. Heh.

Also, seeing as how my exhaustion is just sort of sitting under the surface ready to come back, I’m going to be doing some reposts of my older stuff that you might not have seen. I promise it will be funny stuff at least. Also, if anyone wants to put their hand up and guest post, I’ll accept guest posts too.

It’s like a Sleepless Nights holiday, only not really.

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Cymbalta, Ehlers Danlos and Teething.

by Veronica on July 17, 2010

in Animals, Ehlers Danlos Syndrome, Gotta Laugh

This morning when I woke up and discovered that my skin was still looking godawful and I looked terrible, I thought that maybe I’d just hide in a bed somewhere warm for the day. Of course, life with kids never works out quite that way and while I did manage 30 minutes in bed before lunch with a book, I had Isaac snuggled under my chin and Amy curled up in the small of my back, eating an orange and dripping juice everywhere.

I think part of my roller coaster of manic energy/total exhaustion has been due to my new tablets. The cymbalta have been fantastic for my anxiety since I got over the hurdle of the first week – in which I spent the days feeling stoned out of my mind, not sleeping and hurting all over – however, they do have some drawbacks.

My appetite has been killed dead. Now that wouldn’t be so bad, if I didn’t get sick so fast. Without eating, my body forgets all the things it’s meant to be doing, like healing and not producing giant bruises and spectacular pimples. Cups of tea, sadly, while I could keep them down, weren’t doing anything for my health, because it’s all I was ingesting. I’m making a giant effort to at least drink milk and eat lots of fruit and while I’m still taking anti-nausea pills like they’re going out of fashion, I’ve not retched today and I have managed to eat. Not a lot, but I ate.

The cymbalta also make me incredibly restless. I was hoping they’d make me a little drowsy, so I could take them before bed, but a few nights of not sleeping convinced me that that’s not how they were going to work. I’m having trouble sitting still to do anything, finding myself wandering away mid sentence in a book, or drifting towards the fire a few lines into a blog post. The children think this is great and follow me around the house, hoping that I’ll dole out chocolate instead of setting out to make a proper lunch. I’ve not done it yet, but they’re forever hopeful.

On the upside, like I mentioned above, they’ve been fantastic for my panic attacks and so so good for the neuropathic pain episodes and despite the first week of insomnia, I am sleeping well enough at night, once I can finally switch off. Surely 6 good heavy hours of sleep is better than 8 broken hours. Right?

In other news, Isaac is teething, with 3 molars making their way through at the moment. While he’s not waking at night – he’s a better sleeper than Amy, still! (who is waking at night, regularly) – he is completely miserable during the day, clinging and whining a lot. It’s draining on me, as I’m falling apart a little and he wants to to snuggle on my chest, while I stand up and rock him. Sitting down = unacceptable. He will allow me to sit on the fit ball, but my proprioception is so terrible that I am certain it’s only sheer luck we haven’t fallen off it yet. At this point, with him clingy and completely napless, I would KILL for a rocking chair. It’s on my wish list of things I’ll never have. Like a dishwasher, a maid and spare time.

He was happy today to see my mother and even happier to wander around outside with us for a while, although he had a tantrum of epic proportions when we came back inside because I couldn’t stand any longer. He can do a brilliant tantrum, with the face down screaming and kicking. I’m sure it will be amusing until the first time he does it in public.

Amy was also thrilled to be wandering around outside with her grandmother and her mother, even happier when Mum found two duck eggs, laid early this morning. (They definitely weren’t there yesterday evening when I did the rounds) At this point, we’ve got 5 ducks and a drake, 6 chooks and a rooster and we’re getting two hens eggs a day. I’m going to steal some of the ducks eggs, just long enough to get us into spring, so that I won’t be worrying about the ducks (and hens) raising babies in the bitter cold. When they start to sit, I’ll keep you updated.

I’m hanging on Spring and the warmer weather, dying to get things growing properly in my garden and to be eating something (other than eggs) that I’ve had a hand in producing. Not to mention how much better my EDS feels when I’m not frozen solid and I’m able to sit in the sunshine, without the wind stripping the flesh from my bones. Come on warmth.

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Explorers Journal

by Veronica on May 22, 2010

in Gotta Laugh

Read this post in a David Attenborough voice, okay? It will work better that way.

***

Day 4 of my self imposed exile and aside from brief forays to the chook pen and toilet, I’ve not left the house. The small female human has been braver than myself however, using every moment that I’m distracted to disappear out into the frozen wilderness. Luckily the sun has been out during the day, easing the thaw a little, although not allaying the cold.

The small boy child has been voicing his pissedoffedness in many and varied ways, throwing pencils and tantrums alike. Warm milk seems to soothe the dangerous beast within his breast and I’ve been taking advantage of that.

I had to venture outside after dark tonight to see to my personal needs, our toilet remains outside. An oversight on the part of the builders, but something I have to put up with. Whilst out there, I checked our thermometer and discovered that the cold isn’t treating it well. Temperatures taken from the unbroken band of mercury show that we are well below zero.

I remain hopeful that tomorrow will dawn sunny, if cold and that my garden will escape unscathed. I’m eternally hopeful.

I suffered today with an extreme tiredness, made worse by the even more extreme willfulness of the small female human. Around lunchtime I had a burning desire for a roast duck dinner, but in the end, couldn’t be bothered slaughtering a duck, although goodness knows the first part would have at least warmed my hands up. No, instead the ducks are earmarked for eggs this coming Spring (oh! why must the warmth be so far away?) and babies that will be eaten next season. Another time I will regale you with tales from my property and our trying to be self sustainable lifestyle.

Sleep has been in short supply, between the children and my nervousness. The cold seems to sap all my remaining energy and I can barely feel to type. (insert tiny violins here) My nervousness stems from the fact that it appears I will be speaking as part of a panel to the MEAA next week some time, as organised by the Walkley Foundation. It should prove to be interesting and good fun, if I can get my nerves and I’m not good enough complex under control. I’m hoping to freeze myself out of it.

My time here, it grows shorter and I can almost hear my book and hot chocolate calling me. I just thought a note from the wild frozen tundra would help you wait for me, a little longer.

Goodbye dear readers! And I hope it’s warmer wherever you are.

***

I couldn’t help myself. It’s fucking freezing here tonight, already -2C and I needed the giggle. So yeah, the MEAA. It will be FINE. Promise it will be fine? Also that it will warm up. Please.

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A sign that there isn’t enough sleep in this household lately…

by Veronica on May 20, 2010

in Gotta Laugh

… this morning, I tried to brush my teeth with facial scrub.

Yuk.

I do these things so I can warn you against them.

You’re welcome.

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On the nature of living with a (mostly) invisible disability.

by Veronica on May 17, 2010

in Ehlers Danlos Syndrome, Gotta Laugh, Headfuck, Life

If you watch me walk down the street, you probably wouldn’t know that I had Ehlers Danlos Syndrome. Mostly because I try not to get into positions that end up with me walking down the street – which strikes shopping off my list.

If you notice me walking, I probably look okay, to you. You don’t see the slight hitch in my step as my hips sublux over and over again and you (hopefully) don’t see the intense concentration on my face that shows I’m placing each foot consciously, making sure they don’t turn in/fall apart/trip me over.

Most of the time, I don’t even notice these things either. The conscious foot placing has become second nature, like making sure everything is in it’s place before I stand up. Falling isn’t as fun as it sounds. I’ve put up with them for so long, ignored them for so long that they pass me by. I don’t notice how hard walking is, or how my hips slide around in the joint.

Until I have a major crash and I discover that I’ve burned so much energy being okay, that I can’t be okay anymore.

When I dislocated my knee at the beginning of the month, I was crashing and crashing hard. I don’t pay much attention to my daily dislocations, mostly because they’ve happened so often that they’re nothing special anymore. I do however say fuck a lot as I busily try and relocate things and I have been known to kick Nathan in the shins for huffing when asked to reduce my many many dislocated ribs.

My knee however was different. It was dislocated badly for almost 3 hours, leaving me unable to move. By the end of the 3 hours, I’d gone from being mostly okay with just some minor pain (when the fibula was totally dislocated) to openly sobbing as it slowly slowly relocated over whatever tendon was holding it out of position.

That was the straw on the camels back. The next few days I spent curled up in the recliner, braced and taped to within an inch of my life, not really able to do much of anything except issue orders and dole out cuddles.

I’m still not recovered from the big crash. It’s probably the hardest I’ve pushed myself and the farthest I’ve fallen since I was in High School and determined to be like all the other teenagers competing in our Rock Eisteddfod. Yes, I did it. I also spent a month in bed after it.

It hits me hard after a big crash, just how bad my EDS has gotten. My left shoulder slides around in it’s joint and my pelvis feels like it’s a wobble board. My ribs fall out of place and my collarbones forget how to hold together, along with many many other things.

And it’s stupid little things that drive me insane. Not being able to hold my arms up long enough to brush my hair, without running out of energy and needing to sit down where ever I am. Being exhausted, but at the same time, being completely unable to sleep. And if I do sleep, waking up with more dislocations than I fell asleep with and hurting oh so badly.

People don’t see that when I’m out and about though. Hell, people don’t see it full stop. Even Nathan doesn’t see the bulk of what dislocates and how bad it is, day to day. If I told him about every dislocation I’d never get anything else done.

Ehlers Danlos is an invisible disability and you can’t see it on me. Not unless you’re bendy too and can spot the symptoms across a waiting room. Unless I’m wearing a bright pink wrist brace (which I’m totally going to start campaigning for, the beige colour is shit) you can’t tell.

Unless I’m exceptionally grumpy, no one knows that I’m feeling crappy. On days when I simply cannot brush my hair without needing to sit in the middle of the bathroom floor exhausted, I don’t leave the house. Easy as that.

May is Ehlers Danlos Syndrome awareness month, so this is me, making you aware. Because this month, I don’t think we’re seeing any doctors and I’m getting a little tired of having to go over the same thing over and over again with our doctors. EDS affects everything. My collagen works like sun soaked chewing gum, unlike most people’s, whose collagen works like snappy rubber bands. Things hurt. My pain is bad, my joints are bad and I’m tired.

And people can’t see it.

Which is a curse and a blessing in the same breath.