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	<title>Sleepless Nights &#187; Ehlers Danlos Syndrome</title>
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	<description>Some day we will sleep...</description>
	<lastBuildDate>Wed, 16 May 2012 02:18:58 +0000</lastBuildDate>
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		<title>The reality within the ideal</title>
		<link>http://somedaywewillsleep.com/the-reality-within-the-ideal/</link>
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		<pubDate>Tue, 15 May 2012 07:38:55 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[My body is broken.]]></category>
		<category><![CDATA[Pregnant. Finally.]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=6827</guid>
		<description><![CDATA[I went to lie down this afternoon with my son and my book, only to wake up two hours later, kindle akimbo and pelvis screaming at me. I&#8217;d call it narcolepsy, but I suspect &#8220;pregnancy&#8221; is a better diagnosis. I woke up to find that Isaac hadn&#8217;t wet himself, that Nathan had cleaned the house [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>I went to lie down this afternoon with my son and my book, only to wake up two hours later, kindle akimbo and pelvis screaming at me. I&#8217;d call it narcolepsy, but I suspect &#8220;pregnancy&#8221; is a better diagnosis. I woke up to find that Isaac hadn&#8217;t wet himself, that Nathan had cleaned the house and that everything was pretty much perfect. I am inordinately grateful for this.</p>
<p>Ten minutes later as I was sipping a cup of tea to wash down the buckets of panadol I required, Isaac ran up to me, threw his arms around my neck and squeezed tightly, before racing off again.</p>
<p>In contrast, I saw a physio yesterday who reminded me about the importance of good posture, gave me millions of pelvic floor exercises to do, looked a bit stunned when I discussed what joints of mine actually dislocate and sold me a pelvic brace.</p>
<p>It was an interesting appointment, rehashing things I already knew about how to correctly sit at my computer, how to not destroy my vagina forever and how to ease strain on my shoulders.</p>
<p>All of which are perfect in theory, but a little messy in reality. I pointed this out and she responded &#8220;It&#8217;s about finding the reality within the ideal&#8221;.</p>
<p>Which I guess is a perfect description of life, isn&#8217;t it?</p>
<p>As much as the ideal version of sitting at a computer looks great, if I sit properly, my blood pressure bottoms out and I either puke, or pass out. Neither are conducive to working, in case you&#8217;re interested. And so I write blog posts either lying in bed with a laptop, or with my feet resting up near the mantelpiece. Definitely bad for my posture, but it&#8217;s about finding the least bad thing and attempting that.</p>
<p>I keep reminding myself that pregnancy is not forever, that eventually I&#8217;ll be allowed to take the good drugs again and that I will have a smooshy new baby as compensation. Sometime in September, I&#8217;ll stop wanting to puke all of the time, my joints will stabilise a little bit and my skin will clear up.</p>
<p>Everything is falling apart and yet, it&#8217;s all going to be okay. Even if I spend the next three months unable to actually do anything other than write things and lie down, it will get better. Things will ease and I will not remain this unwell for ever.</p>
<p>This is shades of Amy&#8217;s pregnancy over again and I survived that, in worse health to start with. I can get through this. Pregnancy is meant to be glowing health and skipping through rainforests, while birds serenade me.</p>
<p>However, I&#8217;ve got to get used to the reality, within my ideal.</p>
<p><a title="24 weeks 007 by Veronica Foale, on Flickr" href="http://www.flickr.com/photos/sleeplessnights/7200306590/"><img class="aligncenter" src="http://farm9.staticflickr.com/8148/7200306590_4d1df8c6a1_z.jpg" alt="24 weeks 007" width="640" height="438" /></a></p>
<p>24 weeks.</p>
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		<item>
		<title>This pregnancy is killing me. Figuratively.</title>
		<link>http://somedaywewillsleep.com/this-pregnancy-is-killing-me-figuratively/</link>
		<comments>http://somedaywewillsleep.com/this-pregnancy-is-killing-me-figuratively/#comments</comments>
		<pubDate>Fri, 06 Apr 2012 05:26:06 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[My body is broken.]]></category>
		<category><![CDATA[Pregnant. Finally.]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=6640</guid>
		<description><![CDATA[First, I will start with a disclaimer: Yes, I know how lucky I am to be pregnant. All of my pregnancies have been flukes and I am very grateful that I conceived naturally, despite being told that my chances were pretty terrible. But being pregnant was not the end result &#8211; having a real live [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>First, I will start with a disclaimer:</p>
<p><em>Yes, I know how lucky I am to be pregnant. All of my pregnancies have been flukes and I am very grateful that I conceived naturally, despite being told that my chances were pretty terrible. But being pregnant was not the end result &#8211; having a real live baby at the end is. Thus, I reserve the right to hate the means and love the end.</em></p>
<p>&#8212;</p>
<p>Fourth pregnancy, third baby. I underestimated how hard this was going to be on my body.</p>
<p>I have a disability, which I don&#8217;t think about very often, because this is just me. I pass it off as &#8220;dodgy joints&#8221; or &#8220;crappy genetics&#8221; but when you get right down to it, I have a disability and my joints dislocate spontaneously, leaving me writhing in pain. I also throw up, can&#8217;t regulate my own body temperature properly and have a slightly leaky heart valve, although it&#8217;s &#8220;nothing much to worry about yet&#8221;. I probably also have POTS, but having a complicated genetic disorder means that no one really wants to talk to me about the secondary issues that a fucked up genetic code causes.</p>
<p>This is amongst other things that I try really hard not to think about.</p>
<p>The good news is, my brand of Ehlers Danlos doesn&#8217;t come with spontaneous arterial rupture or aneurysm, and they&#8217;re pretty sure that if I&#8217;ve managed to carry two pregnancies to term without my uterus rupturing, then it&#8217;s unlikely that there will be any major complications with this pregnancy.</p>
<p>I&#8217;m also incredibly lucky that unlike many other women with Ehlers Danlos, I have two and a half babies to show for my four pregnancies and we are incredibly hopeful that my success rate will be a whopping 75% by the time August rocks around. If I was a duck who&#8217;d hatched three babies out of four eggs, you&#8217;d keep me. A lot of women with Ehlers Danlos will go through miscarriage after miscarriage, failing to bring a child to viability at all. I seem to have missed that part and for that, I am grateful to my uterus.</p>
<p>All that said, my joints are falling apart. At almost 19 weeks pregnant, the relaxin is firmly coursing through my system and my ribs have forgotten what their main job is meant to be. I keep dislocating my left shoulder while I sleep and my pelvis is more like a wobble board that a supportive girdle of holdi-togetherness.</p>
<p>Last night, after running my children a bath, I turned around and felt my pelvis slip. One hip went one way and the other went in an entirely new direction, while I wondered if I was going to be able to walk again. A little bit of quick thinking and some serious remembering of what a physio said to me and I gingerly managed to get onto all fours and rock my pelvis back into place. The baby didn&#8217;t aid me in this, considering s/he wanted to lie transverse, with each end pushing on one half of my pelvis. I guess it was trying to make things roomier in there.</p>
<p>I joked to one of the mums at school that if I can stay walking throughout this pregnancy, I will be incredibly proud of my joints and I am scared that it isn&#8217;t going to happen. The pain is pretty bad and somehow, panadol is pretty useless on the &#8216;your whole body is falling apart&#8217; pain.</p>
<p>Pregnancy is miserable, for me. The baby at the end is not miserable, but pregnancy is the hell I have to go through to get a baby. Even labour is not this tough, or this bone crushingly painful.</p>
<p>My blood pressure and various autonomic nervous system functions are not working as well as they ought and I seem to spin between feeling moderately unawful, to wondering if the floor is going to come up and smack me in the head. (For the record, I&#8217;ve not passed out yet, but I&#8217;m well versed in laying down wherever I am, in order to avoid the blackout)</p>
<p>It&#8217;s exhausting, feeling this crappy. Amy is at school full time and while the break is amazing, she keeps asking why I&#8217;m not doing parent help. I tell her it&#8217;s because I&#8217;m unwell, but really, it&#8217;s not all that pleasant to be the one who can&#8217;t do anything, because you&#8217;re too sick.</p>
<p>I was reading on a &#8220;your guide to pregnancy week by week&#8221; site about all the symptoms of pregnancy that should have eased by now. The second trimester is meant to be the golden trimester and all I want to do is shoot the writers. <em>The nausea should have eased! Your exhaustion should be a thing of the past! Headaches are caused by hormones and should stop by the second trimester!</em> I want to shoot them, and then bring them back so that I can shoot them again. Pregnancy is miserable.</p>
<p>Finally, in a moment crowning glory, the midwifery appointment that I was meant to have a few days ago &#8211; they wrote down the date incorrectly, so that I missed the appointment, because of an admin error. When they remade the appointment, instead of being at the clinic closest to my house, it&#8217;s now at a different clinic, a further 25 minutes drive away (40 mins away all up), at a totally inconvenient time, if I wanted to spend any time at home between school drop off and school pick up. I&#8217;d ring them and change it, only I&#8217;m scared that it will make things even more inconvenient for me. Better the devil you know, and all that jazz.</p>
<p>It&#8217;s a good thing I can feel this baby wiggling and kicking around in there and that I wasn&#8217;t relying on the midwife to provide me with proof of life, isn&#8217;t it?</p>
<p>I know that most of this discomfort will fade into the background once the baby is born and that by 6 weeks post partum, I should be feeling somewhat better. All of this will be a vague memory of discomfort and that is what I&#8217;m hoping for.</p>
<p>In the meantime, I am just very glad that this is the last time I am going to be pregnant.</p>
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		<title>18 weeks</title>
		<link>http://somedaywewillsleep.com/18-weeks/</link>
		<comments>http://somedaywewillsleep.com/18-weeks/#comments</comments>
		<pubDate>Sun, 01 Apr 2012 00:25:50 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[Pregnant. Finally.]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=6620</guid>
		<description><![CDATA[Alternative title: Not an April Fools Day post. I feel huge. And I know in reality that I am not that big, but my lungs are squished, my bladder is squished and my ribs are increasingly uncomfortable. We won&#8217;t even discuss the wonky things that my pelvis is doing. &#160; The bad bits: Nausea continues. [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>Alternative title: Not an April Fools Day post.</p>
<p><a title="18 weeks pregnant by Veronica Foale, on Flickr" href="http://www.flickr.com/photos/sleeplessnights/7033475369/"><img class="aligncenter" src="http://farm8.staticflickr.com/7090/7033475369_3c5d01534d_z.jpg" alt="18 weeks pregnant" width="640" height="408" /></a></p>
<p>I feel huge. And I know in reality that I am not that big, but my lungs are squished, my bladder is squished and my ribs are increasingly uncomfortable. We won&#8217;t even discuss the wonky things that my pelvis is doing.</p>
<p><a title="18 weeks pregnant by Veronica Foale, on Flickr" href="http://www.flickr.com/photos/sleeplessnights/6887381692/"><img class="aligncenter" src="http://farm8.staticflickr.com/7092/6887381692_25bf92740e_z.jpg" alt="18 weeks pregnant" width="640" height="422" /></a></p>
<p>&nbsp;</p>
<p><strong>The bad bits:</strong></p>
<p>Nausea continues. I&#8217;m still medicated for the nausea, which due to the type of medication has made my breasts leak early. I call this blatently unfair. The meds also give me a constant low-level headache, which is miserable. At least, I&#8217;m blaming the meds, it could be the Ehlers Danlos and hormones.</p>
<p>Thrush. You know, thrush is pretty rotten at the best of times, but this pregnancy has thrown my system off seriously and I can&#8217;t seem to clear it up, no matter how many probiotics I eat. Hat tip to Blackmores Women&#8217;s Bio-Balance stuff that I first tried after a Bloggers Brunch, which seems to keep things manageable, if not cleared up. It&#8217;s miserable.</p>
<p>Itching breasts. WHAT IS WITH THAT? The last two pregnancies that worked, I didn&#8217;t get itchy skin until the stretchmarks started to appear. This time, my breasts are constantly itchy. It&#8217;s driving me batty.</p>
<p>Reflux. Something I am also still medicated for, considering the generalised laxity of my gastric system. My meds keep it mostly under control, until I try to go to bed with anything less than three pillows in strategic positions.</p>
<p>My inability to sit up in a chair comfortably. Apparently, my internal organs have decided that the best place they can relocate to is my ribcage. Unfortunately, my ribcage houses my lungs and there is not enough room to sit up straight and also breathe. I was hoping to get to Melbourne in May for the Emerging Writers Festival, but I may have to give it a miss, considering I don&#8217;t think I could sit up for long enough to attend any events.</p>
<p>My blood pressure, which is sitting slightly above dead and requires copious amounts of water and salty food in order to stop the dizziness.</p>
<p><strong>The Good bits.</strong></p>
<p>The increasing pokiness of kicks. I find myself worrying less about the baby dying and more about where it&#8217;s going to be placing its feet next.</p>
<p>No new stretchmarks.</p>
<p>An actual baby hanging around in there. That really trumps all of the bad bits, doesn&#8217;t it?</p>
<p>And hey, I got to go to the movies with Nathan last week, which was a huge deal. We saw The Hunger Games in gold class, care of vouchers from a mate and seriously, that&#8217;s the ONLY way to watch movies, especially when you&#8217;re pregnant.</p>
<p>I am contenting myself with the fact that I am almost half way there and that in a fortnight, we have our big ultrasound that will confirm that there is only one baby in there (one wiggly baby, who can kick in three places at once) and what sex that baby is.</p>
<p><strong>If you&#8217;d like to start placing bets on what flavour of baby we&#8217;re having, feel free to do so.</strong></p>
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		<title>And thus we begin the week of hell</title>
		<link>http://somedaywewillsleep.com/and-thus-we-begin-the-week-of-hell-ehlers-danlos-and-bowel-issues/</link>
		<comments>http://somedaywewillsleep.com/and-thus-we-begin-the-week-of-hell-ehlers-danlos-and-bowel-issues/#comments</comments>
		<pubDate>Mon, 19 Mar 2012 08:22:24 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Autism]]></category>
		<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[Isaac]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=6564</guid>
		<description><![CDATA[Today we had the appointment with our new Paediatrician. You know, the one who comes highly recommended? The one who we probably ought to have been referred to eighteen months ago, but we&#8217;ll ignore that. Firstly, I will say, he exceeded my expectations, in a big way. My expectations were low and my nerves were [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>Today we had the appointment with our new Paediatrician. You know, the one who comes highly recommended? The one who we probably ought to have been referred to eighteen months ago, but we&#8217;ll ignore that.</p>
<p>Firstly, I will say, he exceeded my expectations, in a big way. My expectations were low and my nerves were high, but he was fantastic. He read the letters from our old Paed and then asked us to tell him about Isaac.</p>
<p>And so we did.</p>
<p>We covered the EDS, the autism and finally, the bowel issues.</p>
<p>(Oh god, the bowel issues)</p>
<p>All said and done, through a chain of super lucky events &#8211; he managed to palpate Isaac&#8217;s stomach. This is something no other doctor has been able to do and our last paed didn&#8217;t bother to palpate for the last few appointments. Of course, Isaac didn&#8217;t let the old paed touch him, so there&#8217;s that.</p>
<p>Lo and behold, Isaac has a major bowel impaction, which is probably causing the leakage. His bowel is almost blocked, so therefore, the only poo getting around the blockage is liquid and leaking.</p>
<p>I&#8217;m not sure whether to laugh, or cry at this point.</p>
<p>The obstruction is much too large to pass all on its own, and so at this stage, our only option is to use as much medication as possible, to flood his bowel with water, to hopefully start dissolving the impaction.</p>
<p>Our two options at that point were whether we were going to do this at home over 7-10 days, or hospitalise Isaac with a nasal gastric tube and flush his system in 2-3 days. We&#8217;ve elected to try at home first (obviously), knowing that if it doesn&#8217;t work, we&#8217;re headed for the hospital.</p>
<p>And thus begins our week of poo hell.</p>
<p>Our instructions are to dose Isaac every day, until his bowel runs pretty clear and we can no longer feel the obstruction. I can feel the impaction myself and I would say it&#8217;s the size of my fist.</p>
<p>I guess we&#8217;re just lucky that nothing ruptured? Is that my bright side here?</p>
<p>I&#8217;m really pleased with how the new Paed treated us, how he spoke to Isaac and his plans for the future (which at this stage are &#8220;I have no idea, but I&#8217;m going to research EDS and bowel issues, see what has worked for other patients and I will have a plan in a fortnight when we talk again&#8221;), as well as his general knowledge of EDS and Autism. It&#8217;s really very nice to have a doctor that you can trust to be a doctor and FIX things, rather than having to deal with everything alone.</p>
<p>I&#8217;m just hoping and praying that the meds work and that we can break this impaction down and avoid a hospital stay.</p>
<p>And in the meantime, we medicate, hydrate and wait.</p>
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		<title>Isaac is more fragile than I&#8217;d like to believe</title>
		<link>http://somedaywewillsleep.com/isaac-is-more-fragile-than-id-like-to-believe/</link>
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		<pubDate>Thu, 08 Mar 2012 04:27:34 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[Isaac]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=6500</guid>
		<description><![CDATA[Last week, Isaac, aged three, dislocated his fibula running through the house. I know this, because I watched him fall to the ground clutching his knee and screaming the same sound I make when mine dislocates. It&#8217;s a primal scream, designed to bring mothers running, their hackles raised. It was a quick dislocation and it [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>Last week, Isaac, aged three, dislocated his fibula running through the house.</p>
<p>I know this, because I watched him fall to the ground clutching his knee and screaming the same sound I make when mine dislocates. It&#8217;s a primal scream, designed to bring mothers running, their hackles raised.</p>
<p>It was a quick dislocation and it relocated itself with a slight click as I picked him up. Something I am inordinately grateful for, as I&#8217;m not sure I could have reduced a fibula dislocation on my own. Ribs, wrists, ankles? Sure. Fibulas make me vomit because I know very intimately how it feels.</p>
<p>I cuddled him and tucked him into my chair with a warm drink, while I sorted out a support bandage and my urge to throw up and cry.</p>
<p>As a side note, you would think in a house full of dislocating people, it would be easier to find tubular support bandaging. You would be wrong.</p>
<p>He sat quietly for 45 minutes, before getting up and running around again &#8211; a little more careful, but not scared.</p>
<p>A few days before the fibula dislocation, he woke up with a black eye. I was baffled, until I remembered him complaining about his sister bumping him in the face. Three days it took for the bruise to fade, while I wondered how his easy bruising would be likely to manifest in the future.</p>
<p>Prior to that, he tore the skin on his back, in a perfect pattern of his lower vertebrae. I wondered aloud at this, until Nathan remembered that he&#8217;d changed Isaac on a linoleum floor earlier that day &#8211; obviously accounting for the torn skin and bruising.</p>
<p>The mere pressure of having his legs lifted, tore his skin.</p>
<p>We&#8217;re more careful now to pad him as we change him.</p>
<p>We&#8217;re careful of him, but he is not careful of himself. He is Three! and Three is for running and jumping, for leaping off furniture and pushing the boundaries. He is not scared and I am grateful that fear won&#8217;t rule his life yet, even as I watch him with my heart in my throat.</p>
<p>Today he piled a feather doona into a ball on the loungeroom floor and dived into it &#8211; tearing the skin on his forehead and probably leaving pieces of himself on the carpet.</p>
<p>It scares me that he is so fragile and that his skin tears so easily.</p>
<p>He is three years old and he thinks he is bulletproof.</p>
<p>While I? I stock up on bandaids and support bandages, lignocaine cream and a hearty dose of guts for myself.</p>
<p>You&#8217;d think it would be hard to go through these things yourself. No, in fact, it&#8217;s harder to watch your child do it.</p>
<p><img class="aligncenter size-full wp-image-6502" title="Isaac skin tear" src="http://somedaywewillsleep.com/wp-content/uploads/2012/03/003.jpg" alt="" width="600" height="400" /></p>
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		<title>Avoiding a wheelchair is a really big part of my life</title>
		<link>http://somedaywewillsleep.com/avoiding-a-wheelchair-is-a-really-big-part-of-my-life/</link>
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		<pubDate>Thu, 09 Feb 2012 00:35:11 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[My body is broken.]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=6358</guid>
		<description><![CDATA[Last year, I spent some time seeing a pain management team, which included a pain management physio. This was a SPECTACULARLY crappy experience, ending with me being handballed off to a psychologist before my physio would work with me again. Of course, I&#8217;ve since finished therapy, having worked out that my feelings of anxiety and [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>Last year, I spent some time seeing a pain management team, which included a pain management physio. This was a <em>SPECTACULARLY</em> <a href="http://somedaywewillsleep.com/blaming-everything/">crappy experience</a>, ending with me being handballed off to a psychologist before my physio would work with me again.</p>
<p>Of course, I&#8217;ve since finished therapy, having worked out that my feelings of anxiety and impending doom are actually a physiological problem, not a psychological one. Basically this means that I&#8217;m fucked, but that it&#8217;s my screwed up nervous system&#8217;s problem, not my brain.</p>
<p>My brain is <em>fine,</em> thank you.</p>
<p>The reasoning behind me needing to see a psych was something along the lines of needing to get my license, to make getting into the city easier. But I&#8217;m too scared to drive because a major dislocation while driving is life-threatening, at best. Even with braces on, I dislocate in and around them. Which is <em>so much fun.</em></p>
<p>All of this is to say, I&#8217;ve been dumped by my physio, who hasn&#8217;t been in touch since sometime last year. I&#8217;m sure as hell not chasing him up, as his reasoning on EDS was pitiful at best -</p>
<p>[<em>Joint dislocations shouldn't <span style="text-decoration: underline;">hurt</span> because they're not causing any <span style="text-decoration: underline;">trauma</span>, because you're bendy already. It's just a <span style="text-decoration: underline;">fear response</span> to perceived damage. </em>To which I asked what about the torn muscles and ligaments that sometimes accompany bad dislocations? He changed the subject.]</p>
<p>- and I decided that he was simply an arsehole.</p>
<p>He was my third physio &#8211; the first one deciding that I was too complicated for her to manage and sending me away, the second being lovely, but part of the public system and I have no idea how I fell through the cracks of her system, and the third being a fuckwit.</p>
<p>Now I&#8217;m pregnant, which requires management by a good physio.</p>
<p>Which I don&#8217;t have.</p>
<p>Insert maniacal laughter here, because <em>of course I don&#8217;t have a physio when I need one</em>. OF FUCKING COURSE.</p>
<p>It&#8217;s like the time I had to cancel an orthotics appointment because I&#8217;d dislocated my knee the night before and physically couldn&#8217;t walk. They said &#8220;we&#8217;ll call you back with another appointment&#8221; and I never heard from them again and the next thing I know, the clinic has moved and I am lost in space.</p>
<p>But I digress.</p>
<p>Pregnant with Isaac, my pelvis started to separate sometime after week 20 of pregnancy, causing excruciating pain. The pregnancy physio associated with maternity saw me, put my pelvis back together, braced me and gave me the info about my joints that I needed to get my <a href="http://somedaywewillsleep.com/seven-years/">diagnosis changed</a> from Chronic Fatigue Syndrome to Ehlers Danlos Syndrome.</p>
<p>I am 10 and a half weeks pregnant now and I can feel my pelvis falling apart, which is causing a trickle down effect through my lower back, ribs, hips and knees. I was hoping to avoid this until after I&#8217;d been referred and seen by Maternity at the hospital (with access to their, frankly amazing, physiotherapists), but here we are.</p>
<p>At 10 weeks, I am falling apart.</p>
<p>BUT (and here is the good bit) I predicted this might happen (albeit, not this early) and planned ahead, by buying an elliptical trainer. Something recommended for low impact exercise and pelvis/hip/back/leg strengthening.</p>
<p>I think it&#8217;s helping.</p>
<p>And when your motivation to exercise is staying out of a wheelchair, it&#8217;s pretty hard to make excuses.</p>
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		<title>It was for your own good, Internet</title>
		<link>http://somedaywewillsleep.com/it-was-for-your-own-good-internet/</link>
		<comments>http://somedaywewillsleep.com/it-was-for-your-own-good-internet/#comments</comments>
		<pubDate>Tue, 13 Dec 2011 01:06:50 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[My body is broken.]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=5998</guid>
		<description><![CDATA[When I got to the point where the Internet became less escapism and more &#8216;holy fuck I&#8217;m going to stab myself in the eye&#8217;, that&#8217;s when I decided that right now, novels are safer and the Internet probably ought to fend for itself for a few days. So I took myself off the Internet, mostly [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>When I got to the point where the Internet became less escapism and more &#8216;holy fuck I&#8217;m going to stab myself in the eye&#8217;, that&#8217;s when I decided that right now, novels are safer and the Internet probably ought to fend for itself for a few days. So I took myself off the Internet, mostly ignored twitter and didn&#8217;t write anything.</p>
<p>I can&#8217;t guarantee that I am completely better right now, but I can guarantee that I know my limits and I will remove myself from the Internet before making sweeping statements regarding selfishness and arseholes.</p>
<p>So, there&#8217;s that.</p>
<p>Yesterday I spent sitting in the recliner, with the perfect amount of pillows propped under my left knee (my good knee, bastard luck) and supporting my shoulders, while I lamented the fact that I had only panadol for painkillering and trying not to cry. It was a bad day. It was a bad day in that it felt like I&#8217;d been chopped into pieces and put back together badly. A trapped tendon in my knee left me wondering if it was going to dislocate and dump me on the ground screaming first, or tear. It didn&#8217;t dislocate and doesn&#8217;t feel torn today, so I can only imagine that it has something else fun in store for me.</p>
<p>It was at the end of yesterday that I got incredibly grumpy about my response to pain meds and wondered if it would be worth feeling like I&#8217;d taken speed, in order to be able to function just a little bit. In the end, I went to bed and sulked, knowing that sleeping overnight was more important than being pain free and writing a blog post, or eating something.</p>
<p>So that&#8217;s what I did.</p>
<p>Today is better, tomorrow will hopefully be better again.</p>
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		<title>Hitting the wall</title>
		<link>http://somedaywewillsleep.com/hitting-the-wall-ehlers-danlos-syndrome-and-exhaustion/</link>
		<comments>http://somedaywewillsleep.com/hitting-the-wall-ehlers-danlos-syndrome-and-exhaustion/#comments</comments>
		<pubDate>Fri, 09 Dec 2011 00:45:01 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[My body is broken.]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=5992</guid>
		<description><![CDATA[The problem with a condition like Ehlers Danlos is that sometimes I will go weeks or months without any major issues. That is of course if we&#8217;re not counting minor dislocations, nausea, vomiting and tiredness in our major issues list and ignoring the arthritic pain and assorted aches. This means that I get to function [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>The problem with a condition like Ehlers Danlos is that sometimes I will go weeks or months without any major issues. That is of course if we&#8217;re not counting minor dislocations, nausea, vomiting and tiredness in our major issues list and ignoring the arthritic pain and assorted aches.</p>
<p>This means that I get to function relatively normally for a period of time. Yes, I puke of an evening and have to manage what I eat relatively well. I also dislocate my ribs/shoulder/wrists/ankles/fingers every day, but that isn&#8217;t a huge deal. They&#8217;re all relatively easy to reduce and while painful, I don&#8217;t scream over those. This is what relatively normally means to me, but we can work with this.</p>
<p>The major problems appear when I&#8217;ve been running on empty for a while. The holiday season is rough on me &#8211; rich food, family commitments, later nights, excitable children &#8211; these all conspire to use my energy faster than a week, say, in the middle of winter.</p>
<p>So when I had a positive pregnancy test, a hospital admission for Isaac, a wedding to organise and execute, a miscarriage and a few other unbloggable things happen within a fortnight, you might not be surprised to hear that I hit a brick wall sometime on Tuesday, as my reserves of any remaining energy disappeared and I found myself pretty unable to do anything normally.</p>
<p><em>You</em> might not be surprised, but these crashes always take <em>me</em> a bit by surprise (apparently, I am more determined than smart sometimes and seem to think my body should run on willpower alone) and leave me grumpy at the whole situation.</p>
<p>After all, there is only so much you can accomplish when the ability to walk has just about deserted you and your children are running in circles and demanding feeding.</p>
<p>Thank god for Nathan, anyway.</p>
<p>I am trying to take it easy, but you know what? I&#8217;m just pissed off. I&#8217;m pissed off that I can&#8217;t eat right now without wanting to vomit, that I can&#8217;t walk, that I can&#8217;t move without feeling like someone three times my age, constantly keeping an eye on my joints to make sure nothing breaks.</p>
<p>I&#8217;m pissed off, knowing that getting my boob-to-knee support wear on would help &#8211; but that I know I wouldn&#8217;t be able to get it on in the first place, without dislocating at least one major joint. And I&#8217;m too scared to do that.</p>
<p>I&#8217;m just pissed.</p>
<p>I know that this will get better. My last big crash that felt like this involved me quitting my job and spending six weeks in bed and 12 months recovering (I was pregnant with Amy during that period, which didn&#8217;t help matters) before I felt like I had a decent control over my body again (insomuch as you can control vomiting and dislocations).</p>
<p>Today I have at least managed to sit semi-reclined and deal with emails and write this post (we&#8217;ll ignore the dislocared thumb joints near my wrist, I don&#8217;t type with my thumb anyway), but it&#8217;s a slow process.</p>
<p>I used a good deal of my energy resources today just having a shower, and suspect that my entire afternoon will be spend curled in a chair with my kindle, trying to work out if my hands are stable enough to hold a cup of tea. Yesterday they weren&#8217;t, but I&#8217;m hoping for progress.</p>
<p>And maybe, if I&#8217;m lucky, tomorrow will be better too.</p>
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		<title>On being a bad mother, or a good one. And food. Let&#8217;s talk about food.</title>
		<link>http://somedaywewillsleep.com/on-being-a-bad-mother-or-a-good-one-and-food-lets-talk-about-food/</link>
		<comments>http://somedaywewillsleep.com/on-being-a-bad-mother-or-a-good-one-and-food-lets-talk-about-food/#comments</comments>
		<pubDate>Mon, 14 Nov 2011 07:41:10 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Autism]]></category>
		<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[Food-Issues]]></category>
		<category><![CDATA[Headfuck]]></category>
		<category><![CDATA[Isaac]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=5851</guid>
		<description><![CDATA[A month ago, I was talking to my therapist. Oh yes, I&#8217;m in therapy now, to learn how to manage anxiety attacks and get some support in the middle of this chaos that I call my life. Anyway, I was talking to her and I said: &#8220;I have to learn to let it go. My [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>A month ago, I was talking to my therapist. Oh yes, I&#8217;m in therapy now, to learn how to manage anxiety attacks and get some support in the middle of this chaos that I call my life. Anyway, I was talking to her and I said:</p>
<p><em>&#8220;I have to learn to let it go. My children&#8217;s behaviour is not my behaviour and I cannot control it. I can&#8217;t fix their meltdowns, even though I can do damage control and try to prevent them in the first place. I am their mother &#8211; it is my job to support and guide them and show them what acceptable behaviour is. I cannot force them to act in a particular way.&#8221;</em></p>
<p>It was an epiphany for me, because until I articulated it, I didn&#8217;t realise how much guilt I was dragging around. Guilt that my children are louder in public places, that Isaac will scream and thrash, that Amy will lose her temper and shout at me and that they both have a particular set of wants and needs that are not always the socially acceptable thing.</p>
<p>It&#8217;s ridiculous really, to be feeling guilty because when my son melts down, I can&#8217;t make him silent and approriate.  Because I can&#8217;t change his behaviour to suit my wants &#8211; all I can do is sit next to him and wait for it to pass. And the looks I have gotten, when I&#8217;ve done this.</p>
<p>Contrary to popular belief, I am not a bad mother when I let my son scream in public. I am not a bad mother when my daughter shouts at me and I am not failing to provide discipline when there is yelling and screaming in the supermarket.</p>
<p>It is not bad parenting that my children didn&#8217;t sleep through the night. It is no fault of mine that Amy has trouble falling alseep, or that no one will eat greenery.</p>
<p>My children are small humans. They have wants and needs and likes all of their own, that I don&#8217;t get to control. Not even as their mother.</p>
<p>I am fed up with society telling me that I am wrong. That I am failing in some way, because my children are not round pegs. And I am also sick of parents with entirely neurotypical children, assuming that they have the &#8220;right&#8221; way of parenting, because they don&#8217;t have the struggles that we do.</p>
<p>I am HAPPY that your child loves kale. I truly am. And I LOVE that your kid prefers corn on the cob to sweets and anchovies. But don&#8217;t delude yourself into thinking that it&#8217;s something you&#8217;ve managed as a mother. It&#8217;s LUCK. You are LUCKY. And that is AWESOME, but you are no better than the rest of us.</p>
<p>I had to reassess my thinking tonight and instead of thinking about age-appropriate food, I had to think seriously about what my son would eat. And then I made the decision to trial baby food again, because we have feeding issues. We have SERIOUS feeding issues and I am sick of feeling like a bad mother because my kid won&#8217;t &#8211; CAN&#8217;T &#8211; eat anything that I want him to.</p>
<p>We saw a speech pathologist last week, who confirmed our suspicions. On top of Isaac&#8217;s textural anxiety regarding food, he has swallowing issues.</p>
<p>Is this the autism? Or is this the Ehlers Danlos? We don&#8217;t know. What we are pretty sure is happening, is that he is having trouble firstly chewing food and secondly, moving it to the back of his mouth to be swallowed.</p>
<p>His eating difficulties are not my fault. They aren&#8217;t something that I can force to disappear, even though we will be doing serious therapy for it, along with some medical tests to make sure that there are no physical reasons for the swallowing issues. But I can&#8217;t fix them. I can put the tools in place for Isaac to learn to fix them himself, but I cannot swallow for him. His entire digestive system is affected, to varying levels. I can&#8217;t change this and I can&#8217;t magic it away. It is something that exists and it is no fault of anyones.</p>
<p>I am sick of feeling judged when I say that my son has feeding issues. When meals are a daily struggle because I don&#8217;t care WHAT he eats, I just need him to swallow something (anything, for the love of fucking god). Like his feeding issues are something I can control.</p>
<p>It&#8217;s not that easy, but I wish it were.</p>
<p>I will continue to cheer every single time my son swallows something that isn&#8217;t liquid. I will count dinner tonight a success because egg noodles dissolve well enough with minimal chewing to slide down his throat easily.</p>
<p>And if this means that he lives for another year on apple and pear puree, then THAT is what I will do, and fuck everyone who says that I&#8217;m &#8220;ruining&#8221; him.</p>
<p>Because at this stage, I don&#8217;t care about ruining his long term palate.</p>
<p>I just want my kid to learn to swallow.</p>
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		<title>So far from okay</title>
		<link>http://somedaywewillsleep.com/so-far-from-okay/</link>
		<comments>http://somedaywewillsleep.com/so-far-from-okay/#comments</comments>
		<pubDate>Wed, 14 Sep 2011 02:29:43 +0000</pubDate>
		<dc:creator>Veronica</dc:creator>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[Ehlers Danlos Syndrome]]></category>
		<category><![CDATA[Grief]]></category>
		<category><![CDATA[Headfuck]]></category>
		<category><![CDATA[My body is broken.]]></category>
		<category><![CDATA[grief is hard]]></category>
		<category><![CDATA[I am so very tired. Fetch me a feather bed.]]></category>
		<category><![CDATA[I might be a little insane]]></category>
		<category><![CDATA[My head is going to explode. Probably]]></category>

		<guid isPermaLink="false">http://somedaywewillsleep.com/?p=5517</guid>
		<description><![CDATA[My last few years have been &#8230; eventful. Starting with a pregnancy that didn&#8217;t look like it was going to end well, cancer, death, family fuckwits, autism x 2, early intervention, Ehlers Danlos, a falling down house, debt and depression. It hasn&#8217;t exactly been the time frame that I would hold up to the light [...]]]></description>
			<content:encoded><![CDATA[<p></p><p>My last few years have been &#8230; eventful. Starting with a pregnancy that didn&#8217;t look like it was going to end well, cancer, death, family fuckwits, autism x 2, early intervention, Ehlers Danlos, a falling down house, debt and depression. It hasn&#8217;t exactly been the time frame that I would hold up to the light and dissect, more the time frame that you force to the bottom of your closet, stomping on it as you go, so that you don&#8217;t have to deal with it anymore.</p>
<p>I signed up to participate in RUOK Day and then promptly decided that I would be better off stabbing myself in the eyes.</p>
<p>I am not okay. I am so far from okay, that okay is the distant shore that I left some years ago, before doctors told me that things were &#8220;all in my head&#8221; and tossed around words like anorexia and problems at home to explain why I was sick and exhausted, why I threw up every day and why my joints hurt so badly.</p>
<p>You tell me, how are you meant to trust the medical professionals to help out with mental issues, when mental issues are what they thought your major, genetic, connective tissue disorder was? I don&#8217;t trust them to help anymore.</p>
<p>I watched my grandmother die. I dealt with the fallout that rewriting a eulogy caused. I read long winded rants about myself on the Internet, written by a family member. I dealt with the trolls. I helped clean out her house, knowing that it was never going to be okay that she was dead and we were parcelling up her belongings.</p>
<p>I went to a doctor to discuss anxiety medication, only to be told that it would be better to sort out WHY I was anxious, rather than just medicating. You can&#8217;t cure grief by wanting it to hurt less, any more than you can make a broken bone heal faster than it does. I left with medication, that didn&#8217;t work anyway.</p>
<p>My son was diagnosed with autism and while it wasn&#8217;t the worst thing to happen, it was the straw that broke the camels back. Really universe? Autism and Aspergers ON TOP OF EVERYTHING ELSE? REALLY?</p>
<p>Fuck you.</p>
<p>I would like to be okay, in the same way that I would like my joints to stop dislocating and to stop vomiting all of the time. To stop having to deal with meltdowns and the assumption that I am okay, because I tell everyone I am. I would like people to notice, without having to be told, just how far from okay this whole mess is and to stop assuming that they know how they would handle it.</p>
<p>I would LIKE for the Pain Olympics on the Internet to stop and for people to stop negating what I am dealing with, because it could be so much worse. Sure it could be worse, but stop trying to fucking jinx me. Last time I thought that nothing else could go wrong, everything else went wrong.</p>
<p>And you know what? I DON&#8217;T want to talk about this. I don&#8217;t want to cry anymore, or have to talk about this, or try to explain. Writing it is hard enough. The last psych I talked to about my anxiety and grief, seemed to think that it was nothing to worry about. Obviously I downplay things, really well.</p>
<p>RUOK?</p>
<p>No. No I am not.</p>
<p>Now excuse me, while I get off the Internet, before I am tempted to swear anymore.</p>
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