Post

A Simple Mental Health Pain Scale

Leave a reply

A good friend pointed out, after my last post on the importance of physical pain scale accuracy, that we lack decent ways to communicate our mental health pain scale.

Exactly like physical health, mental health pain is more about the level of distress it’s causing us than the injury itself. The reason we treat pain isn’t because it hurts. It’s because it’s distressing to us.

The brain doesn’t differentiate between physical pain and mental pain. In fact, this is a big reason why they try to get chronic pain patients to tackle existing mental health problems (whether they’re caused by the chronic health conditions or not). Central nervous system sensitisation can make us more sensitive to perceiving pain. Right now, we believe that chronic, severe pain doesn’t actually make us more tolerant to pain. It makes us less tolerant, and oversensitive to it.

You can imagine how well that goes down with chronic pain patients.

It makes sense, though. If every day you burn your hand on the stove, you start flinching before you reach it. Your brain tells you ‘this is hurting already’. Any reminders of that heat or stove will prompt the pain-aversion response, and in the cases of most chronic pain (old injuries), that’s not actually warranted anymore.

That same exact part of the brain is what deals with mental health distress too. It’s why PTSD and chronic pain are such a crappy combination (trust me, I know).

So, a better mental health pain scale. Why do we need one?

If you’ve ever experienced mental health issues, or closely supported a loved one who has, you’ll remember all the questions to try and work out just how screwed up you’re feeling right now.

Initially those are forms like the K10 Psychological Distress Scale, plus a bunch of others that apply to more specific conditions. But can we come up with an easier way of telling our treatment teams and loved ones how we’re doing today?

25354086_1906468952726922_26172569582764110_n

A mental health communication chart shared around Facebook recently.

This quick visual scale was doing the rounds on social media a couple of weeks ago. It’s a good way to let people know what’s been going on for us, and whether we have any immediate needs. While it’s definitely better than nothing, it requires the other person to have a copy (or at least know that ‘red is probably a bad colour’).

Pain scales, on the other hand, are almost universally understood. Even if you don’t have a super specific idea of what the person believes is an 8 out of 10, everyone would know that an 8 is a serious situation. The real problem with pain scales, in my experience, is that we don’t know where to put ourselves.

It’s not that other people don’t understand what a 7 is, it’s that we don’t know how seriously to rate our pain. We have people overestimating their pain because they believe they’ll be taken more seriously (and self-sabotaging in the process), and we have people underestimating their pain because they either don’t want to be seen as a ‘wimp’ or a ‘troublemaker’, or they just don’t understand how the pain scale is meant to work when they’re the one experiencing it.

So can we make a better short-hand mental health pain scale? I think we can.

Let me go into this by saying that despite my decade of volunteering in youth mental health and suicide prevention, I am not a mental health professional or a doctor. I have been a young person with lived experience of mental illness, I have cared for loved ones with mental illness, and I have helped others with their mental illness in both paid and unpaid roles.

I am not a professional, just someone looking for an easier way to communicate pain distress to others. How I classify distress may be different to the ways other people both experience and perceive it, and it’s not a replacement for what the professionals have to offer on the subject. Just consider this another possible option in your toolkit for communication when things are difficult for you or the people you support.

A Simple Mental Health Pain Scale

(by Rori, because she couldn’t find one she was happy with – see below for image version) 

1 is totally fine. Much like my feelings on the physical pain scale, I’m not sure anyone really feels like a 1 for very long, if at all. Maybe when they’re surrounded by kittens and someone else has just made them a perfect cup of tea.

is the smallest amount of ‘something isn’t right’. You might be frustrated that your partner threw their socks next to the laundry hamper rather than in it (again). It’s the groan when another register opens at the supermarket, and you’re in the exact wrong spot in your current queue (too close to the front to dash over and get served more quickly, but far enough back that you’re going to silently judge what other customers are buying while you wait).

3 is a slight amount of distress – the mental health equivalent of a headache. You have the tools to cope with how you feel, but it’s not pleasant. Your distress isn’t impacting on your life in a meaningful way yet, but you know that if it gets much worse, you may start to struggle.

is just a really bloody bad day. Even though you’re still coping with your pain, you may not be able to hide that from others as easily anymore. At a 4, this is starting to impact on your normal daily living, but not across the board. Maybe you’re not sleeping very well, or you’re getting anxious and it’s harder to deal with social situations. This is a great time to exercise your self-care. Take some time out for you, because it’s much harder to cope with things if we’re running on empty. Pick up a book, watch Netflix with a friend, have a shower with your music turned up loud. Be kind to yourself.

At 5, distress is starting to become more evident. If you’re prone to mania or intrusive thoughts, you might find that it’s getting much harder for you to do the things you usually do, the way you usually do them. Your mental health is really starting to impact on your normal life. When I’m a 5, I start avoiding friends because I don’t want to deal with the hassle of socialisation and the ways that affects my mental health. If you haven’t already reached out to a mental health professional (counsellor, psychologist, psychiatrist, or even just your local doctor), now is probably a good time to do it. Early intervention is best intervention.

6 is getting pretty serious. I know it’s just over halfway, but remember that totally healthy, happy people are a 1. You’re not halfway between ‘happy and unhappy’, you’re halfway to ‘this is as bad as I can possibly imagine’. Don’t underestimate the pain you’re in. By 6, your mental health is really getting in the way of your normal life. You’re starting to have significant trouble doing the things you usually do (sleeping, socialising, thinking, eating, exercising, working or studying, and doing stuff you enjoy). Depending on your specific problems, this might just be a simple ‘these things are hard’, or it might be ‘I can’t do them the way I used to do them’ (like if you have OCD, mania, or other problems with impulse or compulsiveness). If you haven’t spoken to a mental health professional by now, you need to. Now is also a good time to make sure you have a support person who can advocate on your behalf if you struggle to communicate your needs. Remember that a 6 on the physical pain scale means that it’s hard to talk outside your pain (like contractions in labour). If you do become more unwell, it can be very difficult to advocate for the care you need.

At 7, you’re reinforcing your distress because of the way you’re coping with it. This is where things like depression are really, really hard to manage without some kind of intervention. Socialising causes you distress, so you avoid it, and that just reinforces the entire pattern. Insomnia stresses you out, which releases stress hormones and makes it harder to sleep. You don’t have an appetite so you eat less, and that makes you less hungry. You need someone else to step in to help you. I know it often doesn’t feel as serious as this when you’re experiencing it, but to a healthy person, this is really concerning if it’s affecting multiple areas of your life. Healthy people don’t feel this way. Not for extended periods, not across multiple parts of their daily life. You’re unwell, and you need help.

8 is serious distress. On the physical pain scale, you can’t function with the sort of pain you’re in here. It’s not much different with mental health. You’re avoiding normal daily living tasks because they’re too hard. Your behaviour and personality have changed in ways it’s impossible for those around you to ignore. You’ve run out of the ability to cope with things, and this is probably starting to come out in some ways that are pretty dangerous for you. Impulsive and compulsive behaviours, considering or actual harm to yourself, not taking care of your basic needs (hygiene, nutrition, etc). If this was physical pain, we’d be cranking up the morphine and trying to fix the problem. Your mental health supports need to be doing the same. Make sure your advocate understands your distress.

9 is critical. Don’t be afraid to use your 9. Don’t wait until 10 to say ‘this is the worst I’ve ever felt’. Don’t wait until you can’t imagine things getting any worse. Use your 9 now if it’s necessary. It’s important for us to remember that the peak distress point isn’t always suicide. While that is absolutely an issue that should be treated with most importance (you can’t treat a dead person), it’s possible for someone to completely neglect all areas of their health and still not be suicidal. Those people should still be treated seriously. Don’t discount yourself or a loved one just because they aren’t actively suicidal. At a 9, all or most major daily life functions are seriously affected – sleep, appetite, hygiene, socialisation, work/study, exercise, leisure. At a 9, someone is existing, not living.

10 is the worst you can imagine your distress to be. Like with the physical pain scale, if something else could make you feel worse (like losing a loved one), then you’re a 9. If you honestly couldn’t tell if anything else terrible happened in your life, this is your 10. For most people this is actively planning a suicide attempt, but it doesn’t necessarily have to be. Curling up in your bedroom and no longer attending to any of your body’s needs can still be a 10. Planning to hurt others can be a 10. Having no attachment to reality anymore can be a 10. There are lots of ways mental health and mental distress can be experienced, and this is not just a suicide scale.

This isn’t a definitive guide to mental health. You know yourself better than anyone else does. If you have a history of rapid decline, seek help earlier. If you know your history of therapy and full toolkit of coping skills means your ‘4’ is someone else’s ‘8’, communicate that to those involved in your care. The pain scale is only as good as we’re able to explain it to other people – whether that’s mental health or physical.

I’ve thrown together a short version of this in an image form, just to make it easier to spot, use, and communicate.

MH PAIN SCALE

Rori’s mental health pain scale! Yes, I made this all myself, including the smiley faces. Yes, I know they’re a bit… wonky. Yes, I love them anyway.

Feel free to use and share away if you feel this might be useful for you. The better we’re able to communicate with our treating teams and loved ones, the more likely we are to be supported in a way that’s useful to us.

Be gentle with yourself.

 

Advertisements
Post

There is no 11 out of 10

Leave a reply

We need to talk about pain scales, and why not following them is the reason you’re not getting adequate care – and how that affects other patients.

This image has been doing the rounds today. I hate it.

Most of you are aware of my daily pain levels. I have about two dozen partial or total dislocations on a good day. While my joints do come out and reduce easier than those of healthy people, it’s still extremely unpleasant, especially for large joints like hips and fiddly ones like knees and shoulders.

I’m on very strong pain relief, but it only covers me enough to get through a basic day. It doesn’t cover bad days, it doesn’t leave me anywhere near pain-free. It just means I don’t spend all my time sobbing in bed, unable to make it to the bathroom.

As chronic illness patients, one of our greatest challenges is trying to convince our medical and allied health providers that we’re really in as much pain as we are. This is particularly difficult considering that pain for us falls into a few different categories.

We have new, acute pain caused by a new injury or illness (like appendicitis).

We have old, chronic pain not associated with any new injury (like most back pain).

We have acute pain associated with and aggravated by an old injury or illness (like a disc herniation getting worse).

And finally we have chronic ‘acute recurrent’ pain, where each injury or illness occurrence is new and resolves within the acute timeframe, but it doesn’t only happen once (like my dislocations).

Each of these needs to be treated in a different way. The management for post-operative pain is very different to the management of an old injury. Even the way our brain responds to each of these is different, which is why pain psychology should be a necessary part of every chronic pain patient’s toolkit.

faces-pain-scale

One of the issues we run into as chronic pain patients is comparing our chronic, regular daily pain with an acute pain episode.

“If I usually live with a 6 out of 10, and this is so much worse than that… it must be an 11!”

There is no 11, and the pain you’re about to experience is shooting yourself in the foot. Let’s talk about the pain scale.

0 is a magical unicorn number I’m starting to believe doesn’t really exist. You’re in no pain at all. If there’s anything wrong with you, it’s probably anaesthetised or there’s nerve damage.

1 might be hunger, maybe you’re actually itchy instead. You think you remember bumping your elbow on the stairs 3 days ago, but maybe it’s just cold. It’s more than nothing, but is it really anything? You can’t be sure.

2 is discomfort. You’re sucking on your finger because your cat scratched it when you put her in a little elf costume for Santa photos. It hurts, but you’re easily distracted by Thor coming on television. No one’s denying you’re in pain, but if you whine about this for very long you know they’re not going to put up with it.

3 is the headache you get from not drinking enough water to balance out the 8 cups of coffee you’ve had at work to put up with Janet from marketing. It’s distracting and makes you short-tempered. This is usually where most people consider taking Over the Counter (OTC) pain relief, like paracetamol/acetaminophen or ibuprofen.

4 is starting to get pretty damn uncomfortable. It’s worse than a headache, and you damn well better hope no one is driving like an asshole on the way home or they’re going to hear it. This is roughly where period pain sits for a lot of those who menstruate, but sometimes it can be a lot worse.

5 is a bad sprained ankle that you’re still walking on even though you know you really shouldn’t. It’s vicious but not so bad if you can avoid it, but if it’s constant then this is the kind of pain that hospitals start to take seriously. This pain stops you from doing things you would usually do, it’s hard to push through.

At 6, you have a really hard time trying to concentrate on anything but the pain. For those who have experienced labour, you’ll likely remember how you didn’t talk during contractions (cursing out your partner isn’t ‘talking’). That pain is at least a 6.

At 7, we’re starting to get into tears territory. Not everyone reacts the same way to pain – some people scream, some people cry, some people go really quiet. However you deal with serious acute pain? This is where that natural response overrides more logical responses to what you should be doing – Talking to a doctor, doing an examination, even using the bathroom can take a massive amount of effort to overcome that pain response instinct.

8 is serious pain. We’re talking ‘it’s hard to breath’ pain. By the time your pain reaches these levels, it’s definitely starting affect your vital signs like blood pressure and heart rate. You’re distressed, and your body knows it.

9 is the worst pain you’ve ever been in. Not 10. If you can imagine your pain being any worse than it is right now, it’s a 9. If it hurts more when you move or press on the affected area, it’s a 9, because there’s something else that can make it worse. Don’t be afraid to use your ‘9’ because you think they’ll take you more seriously at ’10’. They won’t.

10 is the worst pain you can possibly imagine. Take whatever you’re going through and break your wrist on top of that. If that affects your pain, you’re not at a 10. If you wouldn’t notice, then your 10 might be warranted. 10 may leave someone unconscious. 10 means you’re definitely not on facebook, even for ‘distraction’. 10 is the peak that you can possibly fathom pain to be.

There is no 11. There is no 15. Nothing is worse than the worst pain imaginable, by the definition of that term. Exaggerating doesn’t help you get pain relief or to be taken more seriously by your medical staff. If anything, it has the complete opposite response – they’re far less likely to believe what you say. 11 is shooting yourself in the foot.

When we’re living with chronic pain, we tend to put that pain on an acute pain scale. “What would my pain look like if I could just hand this to a stranger for 5 minutes?”. It’s useful when we’re talking to a pain management specialist or someone else involved in our chronic care, but that’s really the only time it’s useful.

The time it’s really not useful is when we’re in emergency for an acute problem, and we try to add our pain scales together.

“If I’m usually a 5 out of 10, and I think this pain would be a 6 out of 10… I guess that makes me an 11?”

It doesn’t, and that doesn’t help you or your medical staff.

What is helpful to them is to tell them the sort of pain you experience day-to-day, so they know the references you’re drawing from.

“My frequent dislocations at home are about a 5, and this is worse than that. It’s really hard to talk to you right now and I’m struggling to keep my mind off the pain.”

That, that is what they need to hear. They need to hear “this is the worst pain I’ve ever been in, and I’ve experienced <x>”. They need to hear “I’m already on regular pain relief for a chronic condition, and this is breaking through that so we need to take that into account.”

It doesn’t mean your medical staff aren’t going to be jerks. Pain relief in hospitals is a notoriously dodgy area, and I’ve had my share of not being listened to or believed.

It doesn’t mean they’ll understand what your usual baseline is. It doesn’t mean they’ll understand your conditions (especially if they’re rare or uncommonly seen).

What it does mean is that you’re giving them the best possible information to work from. That you’re not shooting yourself in the foot and making it more difficult for them to get an idea of what your actual pain needs are.

Please, don’t overestimate your pain because you think they’ll be more likely to listen, or because you’re combining acute pain with your chronic pain. You don’t just make your life more difficult, but it makes it harder for others with chronic pain to access appropriate treatment when they need it too.

Post

What if I’m not the inspirational one? Disability, chronic illness, and #inspo

Leave a reply

“You’re so inspirational!”
“If you can do it, you make me believe that I can do it too!”
“Good for you! You’re a survivor, not a victim!”

What about those days where I am a victim? When I’m not inspirational, not somebody else’s ‘learning moment’, and I don’t want to be?

We don’t talk much about the ‘inspirational’ pressure to succeed on those who experience chronic illness and disability. The instinct is to brush the analysis away, tell them to ‘take the compliment’ or ‘we don’t expect it from you, really’.

But that’s not true.

Image may contain: one or more people, phone, shorts, selfie and indoor

Amanda Sullivan Love, aka, total badass on crutches.

I’ve spent today reading about the very inspirational Amanda Sullivan Love, a survivor of two car accidents that left her with extensive injuries. You can find her story here (or an early written form here if you’re more of a words person), but the short version is that she decided to overcome her obstacles, work really hard in physiotherapy, ‘forgive’ those who hit her with the cars, and now she’s doing Spartan Races with forearm crutches. Yay her.

Don’t get me wrong, I think what she’s achieved is amazing. I think a positive attitude goes a long way towards rehabilitation, and being motivated to attain goals is one of the cornerstones of remaining ‘healthy’ as someone who won’t ever be ‘healthy’ in the way normal people use the word. She’s taken her lemons and made some bomb-ass lemonade. She’s the kind of woman who belongs in inspirational docudramas, and inspirational biographies, and inspirational self-help books, and literally every Instagram tag for #inspiration ever. She’s awesome.

and I kind of hate her.

Stories like Amanda’s remind me that I can’t just decide to get up one day and be a #survivor instead of a ‘victim’. Doubling my physiotherapy actually reduces my ability to do the load I’m already doing. I have no one to forgive for my physical disability issues, because no one is to blame. Eating clean is a great goal, perhaps better left for those who are allowed to eat fibre (read: basically all vegetables).

I am incredibly fortunate to have an extensive, enthusiastic support network, but I know many of my friends with chronic illness do not. If they ‘eliminate all toxic people’ from their life, they’ll have no one. A common topic in my Ehlers-Danlos Syndrome groups is unsupportive and often outright abusive partners and families, and how isolated many are from their friends. Cutting out the ‘toxic’ is a luxury many of us simply don’t have.

I’m sitting here staring at Amanda’s photos. All muddy in her Spartan Races, married to a guy who understands her struggles and supports her, Instagram perfect pics in the yard captioned with appreciation for the muscle definition she never thought she’d have. Her posts about the power of positive thinking and forgiveness, about how everything is possible if you don’t give up.

 

Except sometimes it isn’t.

Sometimes you’re not the survivor.

Sometimes you’re not inspirational.

Sometimes you’re sitting at home in your dressing gown and pyjamas, three days before you’re due to leave the country, and you can’t summon the energy to shower let alone pack all your shit.

 

Image may contain: one or more people and indoor

After compressing the nerve in my wrist and losing the use of my ring and little fingers, I wasn’t feeling too ‘inspirational’, let me tell you.

 

It’s okay to not be inspirational. You don’t have to be the reason your able-bodied friends can put their problems in perspective to overcome their hurdles. You don’t even have to be a reminder to your disabled or sick friends that they can ‘do it too’.

With everything people with chronic illness and disability go through, it’s enough to just exist. Maybe some days you can put on your Instagram-ready activewear and get all #inspirational, but you don’t need to. You’re not letting anyone down by just getting through the day. You don’t have to be an inspirational success story just because it looks way more impressive if you’re able to do normal people bullshit.

I’m not saying that it’s healthy to give up on having life goals, or that you shouldn’t try to achieve things outside your comfort zone. I just don’t think we have an obligation to do it because it looks good on the internet, or because it’s depressing to be ‘that sick friend’ who isn’t some inspirational success story.

 

Image may contain: 1 person

Featured: One Rori feeling very, very sorry for herself after a procedure to reduce pain caused more pain. #inspo #blessed #bullshit

 

It’s okay to just be sick, or hurt, or injured.

It’s okay to just be.

 

Post

My 29th Year: The Medical Format

1 comment

Yesterday was my birthday. Last year I made a disappointed post about my recent diagnosis of osteoporosis, and how that impacted on my thoughts of turning 28. I intend to make a similar post this year, but my health has become far more complicated.

This entry is purely to document the health struggles of the last year of my life, to place my future musings into context.

And so we begin.

I travelled interstate in May 2016 to see a neurosurgeon regarding my Chiari Malformation, Cranio-Cervical Instability, and Tethered Cord Syndrome. There we discovered that my cerebellar (brain) herniation had increased in size, and I would require decompression surgery – an invasive procedure involving permanently removing the base of my skull, potentially cauterising the herniated and damaged brain tissue, and patching the dura (the brain’s protective membrane). We would also need to release my tethered spinal cord, attached far too low to the base of my spine. Pretty intense stuff.

During the neurosurgeon’s examinations, he also spotted an unusual neurological quirk. Before going down the surgical route, he wanted that thoroughly examined. I’m already a complex patient. We needed to know if anything else was going on, too.

Back home I went, to find a neurologist familiar enough with my unusual and rare conditions. Before I could settle on a doctor, I became very unwell.

I know, I know. Story of my life, right? It’s always something.

A period of a few weeks of serious fatigue and excessive sleepiness is normal for me. These ‘flares’ are usually accompanied by an increase in pain, but not always. I kept on truckin’ and waited it out.

And waited.

And waited.

And waited some more.

6 weeks after the ‘flare’ began, I realised something new was happening. This was no ordinary flare up. I was sleeping between 16-22 hours a day, every day. I was next to impossible to rouse when needed. I missed appointments, skipped meals, stopped socialising outside my few wakened hours. No chance chasing neurology was on the cards.

My GP (family doctor) realised that I was critically low in vit D and iron stores, with low readings also in folate, magnesium, and b12. I was already on iron and vit D supplements (8000iu a day for vit D!), so this was more than just nutrition.

She referred me to gastroenterology, who diagnosed me with micronutrient deficiency as a result of a malabsorption disorder. We looked for all the usual culprits (coeliac, autoimmune disorders, thyroid disease, small intestinal bacterial overgrowth), but every marker came up clean.

Ehlers-Danlos Syndrome strikes again.

We increased my vit D supplement to 12,000iu a day, and started IV iron infusions. Still the fatigue and sleepiness persisted, and it started to cause its own issues.

The single greatest tool in any EDSers treatment is physiotherapy, or some other form of exercise. Remaining active reduces pain, increases muscle tone, decreases dislocations, increases blood circulation, aids digestion, reduces infection risk (especially respiratory), breaks down adrenaline, and releases endorphins – the body’s chemically identical morphine.

Staying active is what separates the ‘unwell’ from the ‘sick’.

Over the next few months, the rest of my body began to struggle. I wasn’t awake long enough to get in adequate nutrition, which was contributing to the fatigue and causing weight loss I could ill afford. I lost muscle tone and my dislocations drastically increased. The reduction to circulation and low fluid intake made my Postural Orthostatic Tachycardia Syndrome worse, and I struggled with arrthymias and fainting as blood pooled in my abdomen. The increase in adrenaline from the uncontrolled POTS made my gastroparesis worse, making adequate nutrition even harder to obtain. I started to get frequent urinary tract infections from sleeping through the need to pee, and that further sapped my body’s meagre reserves. Finally,  I tore the cartilage in my dominant shoulder from too many dislocations, and it refused to stay in the joint.

We tried to tackle it piece by piece.

 Cardiology prescribed a medication to prevent blood pooling, and try to keep my circulation moving while I’m not.

Dietetics moved me to a liquid formula diet, removing all ‘normal’ food (solid, liquid, or otherwise).

Gastroenterology flailed, unsure of what to do, sending me back to internal medicine for full-body advice.

Orthopaedics operated Mid-March, anchoring my socket back to where it belonged. The regional block failed, causing severe post-op pain, and repercussions. It has been 3 weeks and I’ve barely left the house the pain is still so severe, and though it is slightly improving day by day.

Finally, internal medicine are referring me through to neurology. It’s all come full circle. I need a sleep study (as an inpatient) to look for cataplexy, narcolepsy, hypersomnolence, or some other sleep disorder. It’s entirely possible this is all linked.

I started sleeping my life away in June 2016. Today is April 1, 2017. On a good day, I sleep only 14 hours. Earlier this week I went to bed at 10pm and woke at 9pm the following day. I fall asleep in waiting rooms, during movies, even during appointments if my doctor steps out of the room and I’m left alone with my swamping fatigue.

My shoulder will take a long time to heal. I’m not allowed to start physiotherapy/any active muscle use until at least 6 weeks post-op, but that may be pushed to 8. A healthy person can expect to start using their shoulder after 6 months. It may take me double that due to poor wound healing, and fear that an early dislocation will tear apart all their good work. It will be months until I am allowed out of the sling, and at least another 3 weeks before I’m even allowed to shower.

And after all of this, I will still need brain (decompression) surgery, and spinal fusion for my constantly partially-dislocating lower spine.

I am trying to stay strong, truly. It is just such a monumental task that some days the best I can offer is simply not to quit.

On those days, it is enough.

Post

WoW Tales from BC: Microslave, and how the Horde deals with griefing

Leave a reply
WoWScrnShot_122307_230032.jpg

Karazhan, everyone’s favourite raid. Unanimously.

August 2016 marked 10 years of World of Warcraft for me. I started in late Vanilla and didn’t get to see an awful lot, but I remember a time of dishonorable kills, Southshore/Tarren Mill battles, and learning ranked spells from your class trainer.

Burning Crusade brought the glory days for me. I look back on the content fondly, both because I loved the lore and the way it was presented to us, and I loved the people I played with.

I’m going to share one of those stories with you now. You even get pictures!

<Entranced> was a pretty shitty progression guild on the Oceanic server of Aman’Thul. Our whole server sucked on Horde side. The top Horde guild <Ajantis> didn’t manage to kill Kael before the Black Temple attunement was removed, leaving no hope for the rest of us scrubs.

Being a PvE Carebear server, we had a pretty decent understanding with the Alliance guilds on our realm. When the world bosses were up for the week, we took the pulls by turn, allowing those who formed up first to have their chance and get back in the queue.

This story centers around Doom Lord Kazzak, then situated in Hellfire Peninsula. For those unfamiliar with mechanics of BC world bosses, if he was killed, he was killed. No respawn for the rest of the week. Single raid group would claim the victory and the spoils. Kazzak in particular relied on the goodness of the raid guilds on our server – if you died to an ability from the boss, he would regenerate health. Those not participating in the pull would hang way back, because even a single death could make the difference between a kill and a wipe.

And so it went, except for Microslave.

Microslave was an alliance player. When the Alli guilds attempted Kazzak, he left them alone. When the Horde guilds attempted, he flew in and died to interrupt our attempts. We played by the rules, despite his griefing. When we wiped, we moved to the back of the queue. An Alli guild got the kill that week, and we were pissed. So what do pissed off raiders do?

We get even.

Horde have Thrallmar. Alliance have Honor Hold. Or had. We saw to that well enough.

WoWScrnShot_010108_214356.jpg

Ignore my UI, it was a long time ago, okay? Still, one of the prettier ones I’ve had.

Honor Hold dealt with, we decided we weren’t satisfied. Not yet. We picked up some of the other Horde guilds thwarted by the griefing, and moved onward to the Alliance cities.

WoWScrnShot_010108_220219.jpg

Entrance to Stormwind

These were the days before achievements. There was no mount. There were no points. This was vengeance, pure and simple. We were out for blood.

WoWScrnShot_010108_221305.jpg

Remember when Varian was missing? Like, temporarily. Not for good. Too soon?

A friend logged to an Alliance toon to see if we could track down Microslave. Alli trade chat was overflowing with hatred. We were killing NPCs and anyone stupid enough to flag up. The hate wasn’t for us though, oh no. It was directed at the douche who broke the unspoken treaties of world bosses. The Alliance were out for blood, but it wasn’t ours.

WoWScrnShot_010108_222719.jpg

She took the Deeprun Tram going aaaanywhere.

Ironforge was next. We moved on largely unchallenged. The only people geared enough to take us down were the very raid guilds pissed off that one of their faction was griefing raiders.

WoWScrnShot_010108_224847.jpg

He didn’t drop loot 😦

Ironforge fell quickly – so convenient of them to place the bosses in easily accessible spots, don’t you think? We got word from an Alliance friend. Microslave was in The Exodar.

WoWScrnShot_010108_232236.jpg

We asked the guards for directions to the douche, but they stood firm. Let no one say they lacked courage… or health pools.

If you’ve never stepped foot in The Exodar, you would probably be as impressed as we were initially. It’s a very pretty city. It’s also a pain in the ass to navigate. We ran around looking for our little griefing friend, making friends with the guards along the way.

WoWScrnShot_010108_232025.jpg

Look who we found!?

At last. Microslave. Hated of both factions. Unfortunately for us, he didn’t flag up. He just stood there, watching us kill the NPCs he tried to use. Hope you didn’t want to use the auction house, kiddo.

WoWScrnShot_010108_233636.jpg

Time for a spot of fishing between decimating entire cities.

Unflagged, our blood lust continued. We’d come this far, after all. Darnassus called.

WoWScrnShot_010108_235259.jpg

Summarised neatly in the words of our shadow priest, Sympathy: “IM IN UR BAESE KILLING UR WIPSPS”

Archdruid down, we turned to the grand prize.

WoWScrnShot_010208_000637.jpg

There is so much fucking water here. What’s with that? People asking the Big Questions when destroying cities: “Anyone up for heroic UB after this?”

Seriously. So. Much. Water. We don’t have water in any of our cities. I mean, not unless you count the green sludge in Undercity, or the single puddle in Thunder Bluff.

WoWScrnShot_010208_001238.jpg

Yo, Tyrande. Say hi to Malfurion for us. Oh wait, you can’t. He left you 😦

Darnassus cleared out, there was nothing left for us to do. Our point was driven home. The Alliance turned on their own, assuring that Microslave wasn’t going to be getting his own groups for Heroic UB any time soon (and this was pre-dungeon finder too).

WoWScrnShot_010208_001439.jpg

Reveling in our decisive victory.

We were never griefed again.

Post

#Triggered: You are what’s wrong with the internet

Leave a reply

My parents bought me a modem when I was 12. In 2000, that meant my internet access was dependent on my blazing speed of 28.8k, and I had to get off the internet any time someone needed to use the phone.

Those were not the glory days if you wanted to download porn or play Neopets, but it’s starting to kind of feel like they were the brighter days regardless.

It wasn’t the speed of the internet, it was that assholes hadn’t worked out how to use it yet (or if they knew, they kept to their respective IRC channels).

Cyberbullying was harder. You had to somehow get hold of the person’s MSN messenger account (or ICQ, or Yahoo), and make sure they added you.

If you wanted to harass someone in the comments section of their daily drama, you had to first find their Livejournal account, then find someone else who had a referral code to give you, then sign up, then start insulting. 15 years ago, the internet made you really work at being a dick to other people.

Now, it basically hands it to you on a platter. We’re encouraged to connect to people we may know ‘in real life’ any time we use a service. Want to know how many steps your friends are taking with their Fitbit? How about how many mutual friends you share with this one night stand on Tinder?

Over the last 16 years, I’ve seen waves after waves of internet memes and fads walk in and out of our online lives.

When I first had access to the internet, the HamsterDance and Bonsai Kittens were the ‘in’ things. It didn’t take long for me to find Bash.org and start spamming my friends with hilarious IRC quotes like these gems either. They were harmless fun. No one was hurt (not even the kittens). All mocking was anonymous, and of the innocent kind.

My high school years started to pass, and so did the memes. Peanut Butter Jelly Time, All Your Base, the O Rly owl. I played a lot of Neopets, stuck to community forums largely about books that I loved, and eventually stumbled across IRC (Internet Relay Chat – a chat program, in its essence). The ‘BadgerBadgerBadger’ song popped up, and so did the ‘NumaNuma’ guy.

Those are the days I get nostalgic about. They weren’t perfect, no. It took 3 days to download a song and 90% of the time it was hardcore porn (thanks Kazaa, and later Limewire), but people hadn’t worked out how to cluster together to be awful. When they did cluster, they were in little pockets of the internet.

Now, with social media, the cluster is wherever we are. The internet isn’t filled with hamsters dancing to shitty music, or people quoting from terrible video games.

It’s populated by people who think #triggered is a totally acceptable social response, because they cluster with other assholes who are just as insensitive.

It’s difficult enough to live with PTSD in a community that’s becoming increasingly more selfish. We don’t need a meme dependent on being a jerk to other people who are struggling. It doesn’t even matter if their struggles are ‘worthwhile’ or not. The internet survived for literal decades before the lowest common denominator decided that humour at the expense of others is the best humour.

What happened to us in the time between BadgerBadgerBadger and mocking ‘Tumblrinas’? How did we go from giggling at harmless videos and owls, to ridiculing those with mental illness?

I had to explain to a grown adult this week that joking about beating the shit out of her kids with a belt is well past the line of acceptable behaviour in a public forum.

It’s like we’ve become so afraid of censorship that we’re acting out against it before it happens. The internet didn’t need censorship 16 years ago to enjoy Homestar Runner and Strong Bad. We’d just collectively decided that things didn’t need to target vulnerable groups to be funny. We didn’t need to deride others for internet popularity.

If you joined the internet after the advent of Facebook, and Twitter, and Instagram – I’m sorry. This is all you know. You missed the days of logging on to share things with friends that didn’t require you to be a jerk to someone else.

 

Me? I’ll be over here singing BadgerBadgerBadger while putting mushrooms on a pizza, instead of ridiculing people who have triggers.

 

 

Post

EDS Awareness Day 1 :: EDS in Children

Leave a reply

It’s May. That means ‘almost winter’ here in Australia. It means Mother’s Day is next week. It also means Ehlers-Danlos Syndrome awareness month, and this year I’m going to do something a little bit different.

Most year’s I share the images of ‘EDS facts!’ that float around facebook. Easy to digest snippets of what having a connective tissue disorder can do to your body and your life. They’re useful, I’ll still be sharing them, but this year I want to do more.

Facts about Ehlers-Danlos Syndrome always seem so clinical. So distant. They’re a list of signs and symptoms, lifted from Google and the collective knowledge of so many EDS patients.

But where is the humanity? That is what I’m hoping to find and convey this month.

Every day during May I’ll be sharing a little bit of how Ehlers-Danlos Syndrome has affected my life. Not all doom and gloom, but I’m not glossing over important issues either. I’m more than EDS, but it’s certainly a large part of the person I’ve grown into. I’d like you to get to know how I’ve become the Rori you know (and hopefully like, at least a little). If I’m doing it right, you’ll get to understand both my personal journey, and walk away with a bunch of new information about an underdiagnosed and misunderstood illness.

So, without further ado…

May 1 :: Ehlers-Danlos Syndrome in Children

The three major types of Ehlers-Danlos Syndrome are Classical (1 in 20,000-50,000), Hypermobility (1 in 10,000-15,000), and Vascular (1 in 50,000-200,000). The other three types (Arthrochalasia, Kyphoscoliosis, and Dermatosparaxis) have less than 100 cases reported between them.

Overall, EDS affects about 1 in 2,500 to 5,000 people. Each of the major types are heterozygous dominant – a 50/50 chance of one affected parent passing it to their child, regardless of the sex of the offspring. Each of my three children wound up with the unlucky 50%, so they’re all affected.

About a third of all new Classical type diagnoses are de novo (or ‘spontaneous’/’first’) mutations. I’m one of those. My diagnosis came as a surprise because I’m the eldest of seven children. My mother is one of nine, my father is one of six. If a dominant gene was present somewhere else in my family tree, it would be blindingly obvious.

Growing up as an undiagnosed EDS kid was difficult. I would bruise easily, passed off as clumsiness or an accident in one of the many sports I participated in. Of sports, there were plenty. I was a highly competitive child, with five brothers. Anything they did, I did too (and better, damnit!). Roller hockey, Scouts, ballroom dancing, karate, more dancing, rugby league, netball. You name it, I gave it a try. I was frequently the Girls’ Age Champion of my primary school. I was a pretty healthy kid, occasional bruising and sprains aside. I did have pretty severe ‘growing pains’ (totally weren’t growing pains), but that was about all.

When puberty hit, everything changed. EDSers are advised away from contact sports as they wear badly on hypermobile joints. I didn’t notice any of the effects of my physical activity while I was a child, but it caught up with me rapidly during the onset of puberty, and then later during pregnancy.

Ehlers-Danlos Syndrome is diagnosed far more frequently in females than in males. This isn’t because it’s present more often in females, but rather because of the way it presents (and how often women access preventative healthcare).

Higher levels of estrogen can make joints more lax, increasing pain around specific points in a woman’s menstruation cycle. The surge of hormones on puberty does much the same thing to an adolescent EDSer. In males, it tends to help with formation of muscle density which provides more support for hypermobile joints. In females, it creates further laxity. A similar problem is seen in pregnancy as the body prepares for childbirth. A hormone (aptly named ‘Relaxin’) helps to relax ligaments – great for childbirth, not so great if the rest of your body is a puddle of loose joints already.

In the years between the onset of puberty, and pre-pregnancy, I was nursing some kind of ‘sprained joint’ constantly. It was put down to clumsiness, and later hypochondria. Looking back, I was subluxing (partially dislocating) joints and putting them back in myself on instinct. Joint dislocations feel almost like a painful itch. You know something feels wrong, and you instinctively try to put it back where it belongs until it feels ‘right’ again.

I was eventually diagnosed at 21, during the pregnancy of my second child. More on my diagnosis itself another day.

As far as EDS kids go, my childhood was pretty easy. As much as the contact sports caused later permanent injuries, the muscle I put on probably reduced my dislocations during childhood. After diagnosing an EDS child, doctors generally advise to stick to swimming and other low impact exercise to build up muscle. Muscle is incredibly important, but there’s little point stacking it on if you’re doing yourself long-term damage.

6da12bc4cc1c588acd6a8b298145be8c

Can’t find a larger copy of this 😦 Sorry about the poster for ants!

Other children with EDS are more affected than I was. Though they’ll vary by type, some of the symptoms in children include:

  • Joint dislocations and subluxations (partial dislocations), particularly with minimal or no trauma
  • Chronic pain – often mistaken for ‘growing pains’.
  • Abnormally long healing time. Some scars may stretch and widen. In those with Classical type, scars appear to be paper-thin (‘cigarette paper scars’) and may rupture with minimal trauma.
  • Easy bruising and nosebleeds. In those with Classical type, skin is stretchy, ‘velvety’, and may tear easily.
  • Jaw pain and dislocation. TMJ (temporomandibular joint) disorders are common.
  • Dental issues, like dental crowding, high palate, poor enamel, receding gums, multiple cavities, bleeding gums (‘pink toothbrush’), and periodontal disease.
  • Comorbid illnesses like dysautomnic conditions such as Postural Orthostatic Tachycardia Syndrome (heart rate increase on standing which leads to dizziness and fainting), and gastrointestinal problems such as Irritable Bowel Syndrome, Acid Reflux (or GERD), and Gastroparesis (slow stomach emptying).

If your child shows any of the following symptoms, they should be evaluated for Vascular type Ehlers-Danlos Syndrome as a priority. Unlike the other types of EDS, Vascular can be fatal.

  • Typical facial appearance of large eyes, thin prominent nose, thin lips, hollow-appearing cheeks.
  • Very loose small joints (fingers, toes), but large joints (knees, shoulders, elbows, hips) are generally unaffected.
  • See-through (‘roadmap’) translucent skin. Blood vessels are easily seen through the skin in not typical areas.
  • Easy bruising. Can leave brown iron deposit marks.
  • High risk of major blood vessel and hollow organ rupture (uterus, intestines, etc). Screening for aortic root dilation is a priority and precautions during medical procedures need to be taken.

pRXMQk9

If you suspect your child may have inherited or spontaneously mutated Ehlers-Danlos Syndrome, ask your local/family doctor for a referral to a geneticist. While some rheumatologists can diagnose, the most accurate typing will come from a geneticist. When diagnosing children, there is a normal degree of childhood hypermobility which makes diagnosis difficult. As a result, most geneticists will not diagnose until age five. Until then, usual hypermobility precautions should be taken, and early physiotherapy intervention is considered a good idea.

For more information on Ehlers-Danlos Syndrome in children, click through to EDS UK.

So that’s my Day 1 snippet. The other days will be an awful lot shorter (if for no other reason than a Sydney trip this week!).

I’ll leave you with the Day 1 EDS Fact.

947030_10151655991930359_349334351_n