Ehlers Danlos Syndrome

Drugs and Addictions.

by Veronica on July 9, 2010

in Blogging, Ehlers Danlos Syndrome

Drugs:

I’m beginning to feel a bit like a Pharmacy, as I juggle drugs and fill prescriptions and dole out medication to myself. It’s an interesting place to find yourself at 21, unlike my peers, I don’t have a recreational drug habit, just a I’m-slightly-broken type drug habit.

Nathan wonders what damage I’m doing to my body by taking them. I wonder what damage I’d be likely to do to my body was I not taking them. We end in a stalemate.

I saw the doctor again today, and left with a new anti-depressant, something that has the benefit of being even better for neuropathic pain and anxiety. I’m grateful for this, the Endep is fantastic, but if the new drug, Cymbalta, is even more fantastic than the Endep, well then, I’ll take that thankyouverymuch.

I shall report back with how I’m feeling in a week or so.

Addictions:

Books. My standard addictions. Plus chocolate, but I can’t link you up with the chocolate I love. Hehe.

(all links are affiliate links, but I’ve searched for the cheapest copy of the book, plus it’s free shipping. I earn a few pence if you buy something through these links)

I just finished reading The Time Travellers Wife, which is a brilliant book. Absolutely fantastic. If you haven’t read it, you should, I recommend it entirely.

Other books I recommend entirely are the books from Alice Sebold – The Lovely Bones, Lucky, and The Almost Moon, all of which will take your breath away with their brilliant writing.

I’ve just started The Invisible Road, by Elizabeth Knox (which is 2 books in one, Dreamhunter and Dreamquake), the book that the lovely Stephen Estcourt mailed to me.

On my current to read list are

Riders and Rivals by Jilly Cooper – total junk food for the brain. I’m looking forward to it.

One Hundred Years of Solitude by Gabriel Garcia Marquez – I’ve heard good things.

Amy and I are reading Alice in Wonderland, it’s a little old for her, but she’s enjoying snuggling while we try and get through a chapter a day (a chapter is around 5 pages, so not too bad.)

Schindlers List by Thomas Keneally

My Invented Country by Isabel Allende

And for cooking and food books, I’ve just read Heston Blumenthals Total Perfection and enjoyed it immensely as well as Margaret Fultons Encyclopaedia of Food and Cookery.

So that’s me.

What are you reading at the moment?

And if you’re not reading books, what blogs are making you laugh/cry/wonder? Leave a link, I’m always after new blogs to follow.

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Ehlers Danlos and Neuropathic Pain

by Veronica on July 5, 2010

in Ehlers Danlos Syndrome, Life

A little while ago I went to a rheumatologist to discuss my Ehlers Danlos and various pain management drugs.

At first, the lovely doctor was a little baffled as to why I was seeing her, as she was not a doctor who normally sees EDS – apparently in Tasmania, once you’ve gotten a diagnosis, you’re expected to stay at home and deal with it, not seek input from specialists. But maybe that was just the collective impression I’ve had from all the doctors I’ve seen.

We talked a little, as you do and she admitted that she knew very little about EDS, having only seen one, very mild case of it in her history of seeing patients. I wasn’t put off, I’d much prefer a doctor who admits they know very little and listen to me, rather than someone who knows very little, bluffs it out and ignores everything I’ve got to say.

Of course, we all know how bendy I am and I had to stop myself choking with laughter when she asked which joints of mine dislocate. I told her she’d be better of asking which ones don’t dislocate (to my knowledge, my right elbow is fine. So are my ring fingers. And I don’t think I’ve ever dislocated my spine. I’ve also never dislocated a patella, my knees when they dislocate prefer to pop out my fibula. Yay me) and so we worked through how broken I am.

We talked about pain management and she recommended a new drug, something that I’d not tried. It’s called Endep, and while it’s mostly prescribed for depression, it also works ‘off the label’ for insomnia (check) and pain (double check).

She was concerned about the possibility that my pain, while some of it is related to constant and recurrent dislocated, that it could actually be neuropathic. She was also quick to let me know that she didn’t think that it was ‘all in my head’ but instead, that my nerve signals were getting muddled and telling me I had pain when I didn’t.

Which um, hello pain episodes! I knew, from research, that my pain episodes were likely neuropathic in nature, but I couldn’t get my GP to listen to me properly when I tried to bring it up before. In his defence he is highly overworked, knows very little about EDS and so relies on me to research and present him with the best course of action. Fine when it’s ‘please redo my prescriptions’ less fine when it’s ‘I’m having issues with — and I need your help’.

Anyway.

I have pain episodes. They’re triggered by something hurting, something new, that my body isn’t prepared for, which in turn overloads my brain. When I’m having one, it feels like all my muscles are clenched, my skin feels like it’s burning and every nerve ending sets on fire. I can’t walk properly during one, because it hurts too much and if I’m touched suddenly, I have a panic attack because of the pain. It’s almost like an itch in the middle of your back you can’t scratch, your whole body focuses on it and everything else goes a little hazy.

To put it in perspective, a stubbed toe can cause a pain episode. My latest one was caused by my period starting, the period pain tipped my brain over the edge into a world of hurtiness.

The Endep, because they work on nerve pain, they help the pain episodes, something that no other (legal) drug has helped with yet.

So they’re working and working well – I’m managing to sleep again and my pain has calmed down. Inside a brain, the pain and anxiety centres are very close together (or else respond the same way to stimuli, I can’t quite remember), meaning that pain triggers anxiety and anxiety can trigger neuropathic pain

And there I was, falling apart, stuck in the centre of a giant vicious cycle. That I’ve now, hopefully, broken.

Of course, I’ve still got pain from the dislocations and I suspect we’ll see the onset of arthritis in my hands fairly soon, but the debilitating pain, that’s being helped.

I’m also still on a slow release Tramadol and a regime of panadol osteo (for bone pain) and it’s better than it was. I’m still fairly broken, but I’m not as messed up as I was.

I’ve got a referral to the pain management clinic as well, so I’m hoping that that will help a bit with the pain/anxiety cycle – but of course, like all good things it takes 9 months to get in to see them. Le sigh.

I’m in a good place at the moment, mentally (we’ll ignore my physical bits for now, fucked up mess that they are). Of course, there is a ‘clickiness’ in my heart, so I’m booked for an ECG to check my heart out and I’ve got a mild scoliosis that needs to be watched – something that I didn’t have a few years ago, but I’m in a good place.

Something that I definitely wasn’t a few weeks ago.

***

Updated:

A visit with the doctor has seen my Endep changed to Cymbalta, which in the long term will be better for pain and anxiety. That said, it’s currently making me completely sleepless, so I’m not enjoying myself very much. Sigh. It feels like a balancing act, trying to work out what works best with minimal side effects and long term issues.

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Everyone needs sentinels.

by Veronica on June 15, 2010

in Animals, Ehlers Danlos Syndrome, Life

Nope. Sorry, can’t come through here.

Seems I’ve suddenly got guard ducks. Maybe they’re reacting to a rooster being introduced to the mix?

Who knows.

Or maybe they’re guarding against these guys who have moved in next door.

It’s a Cattle Egret. A beautiful bird.

Sadly, I was outside with only my 50mm lens and not my zoom lens, so getting a closeup was harder than you’d think.

***

In other news, scientists have discovered why women think they are fat.

I’d love to know how I would score in one of their tests, seeing as how my brain thinks my body is actually half a step to the left of where it is, leaving me regularly walking into doors or walls or tripping for no reason.

Seems I’m not the only one with fucked up proprioception.

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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.

Thumb Hypermobility

Wrist and thumb hypermobility

Little Finger Hypermobility

Ankle Subluxation

More photos here

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My Bathroom Really Needs a Lock

by Veronica on April 2, 2010

in Ehlers Danlos Syndrome, Gotta Laugh

I was half way through my shower today, when I spotted my razor on the wall.

Hmmmm. I thought. I haven’t done any maintenance in a while. Maybe I ought to look into that.

Sure, my razor was a little blunt and I probably ought to buy a new head for it, but what the hell I figured, I’ll work carefully.

Just as I started, the bathroom door flew open and in crawled Isaac at the speed of light.

‘Hey-yo!’

Hmmmph. ‘Hello kid.’

‘Here-ya!’ He demanded, passing me a face washer from the floor.

‘Thankyou.’

Nathan followed him in shortly, smirking, and I glared at the both of them until they left.

Back to what I was doing, I was contorted in an awkward position when Amy raced in. I quickly changed to shaving my legs and she didn’t notice.

‘Hi kid. What do you want?’

‘I needa use the potty.’

‘Oh. Okay. Quickly then.’

She left and I went back to what I was doing.

Now, the upside of being bendy is that I can see bits of myself that you probably can’t, meaning that shaving is more sight-work and less guess-work.

The downside of being bendy is that my skin is so fragile, I have to be incredibly careful not to tear great chunks of skin out. Which, incidentally, I have done before, leaving a 4 inch long and inch wide gash down my shin. My shower looked like a scene from Psycho that day.

So, I’m contorted into an awkward position, again, half upside down and moving carefully. I wasn’t really prepared to see a mouse run under the washing machine. Luckily I didn’t start jumping up and down trying to schwack it while I was still contorted.

Heh.

As a side note, we bought new shampoo and conditioner yesterday. Apparently it has a ‘cooling’ action or something, anyway, I didn’t pick it out.

You can see where this is going.

No matter how careful I am, the fragility of my skin means I cut myself numerous times shaving anyway.

And we’ll add that to some distractions.

And ‘cooling action’ conditioner, still in my hair while I was shaving.

Yes.

Maybe it would have been pleasant for a hard core masochist. Me, not so much.

Laugh all you want, it will be your turn next time.

So for this Easter, I wish you undistracted showers, sharp razors and conditioner that doesn’t make your girly bits feel like you dunked them in mouthwash.

A basket full of eggs and a pleasant weekend would also be nice for everyone.

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