Lords of the Spoons

Under Construction... A side blog for spoonie hacks and things. Make sure to always consult your doctor and not a stranger danger from the Internet.

[whatshouldwecallchronicillness]

When my specialist's nurse finally calls after I've been waiting weeks to hear from him...

But then I missed the call because I couldn’t get to the phone in time:

And the nurse didn’t leave the number to call her directly back at so now I have to go back through the phone tree that takes weeks:

[lordsofthespoons]

Oh my luck, this JUST happened to me but with a social worker not even two minutes ago. And I missed the call for a ridiculous reason. *weeps*

[lordsofthespoons]

Take care of yourselves.

Look out for each other.

Fighting is what we do best.

This is not the end.

[lordsofthespoons]

Hey, I've created a twitter page dedicated to disabled women sharing their experiences of gender based violence. The conversation will be happening under the hashtage #livesofdisabledsurvivors. If you could promote this cause to your followers I'd really appreciate it. Thank you!

Greetings,

This campaign sounds like a promising and empowering way to start a much needed conversation.

If anyone following this blog is interested in sharing their experiences, supporting fellow spoonies, and starting a community, please consider this hashtag to start and join the conversation. You can also tweet to vadisabledwomen.

May you find success!

[lordsofthespoons]

sorry for the reblog spam from my spoonie account (cvberchronic)!! your blog is just super quality!

No need to apologize! Seeing reblogs makes me feel glad the content is appreciated.

Once I return from vacation, I hope to get this blog fully up and running again. When that happens, I hope it continues to be a pleasure for you to look at.

Thank you so much for the support! Take care and best wishes to you.

[spoonie-isms]

You might be a Spoonie if...

You’re too sick and tired to even run your blog.

[ptsdconfessions]

Developmental Trauma Disorder (Complex PTSD)

Today I thought I would share with you guys something I have been learning about and researching in my Trauma Psychology class.

Whilst it’s not recognised in the DSM, complex PTSD is thought of as a valid mental disorder by many professionals and trauma researchers. The term ‘complex PTSD’ was coined by someone called Herman back in 1992. She believed that it was experienced by those who had been through repeated or prolonged exposure to trauma. Herman said that the symptoms of complex PTSD differed from PTSD in that those with complex PTSD experienced (in general):

identity changes (eg. feeling as though you are contaminated or evil)

changes in relationships (eg. withdrawal)

harm repetition (eg. self harm)

dissociation

negative mood symptoms (eg. guilt, hopelessness)

A guy called van der Kolk revised and added to Herman’s definition of complex PTSD in 2005. Van der Kolk created a new name for the disorder - Developmental Trauma Disorder - and suggested that it was mostly relevant to young children. DTD involves:

Exposure to one or more forms of chronic “developmentally adverse interpersonal trauma”

Personally experiencing feelings of fear, shame, betrayal (etc.) as a result of the event(s)

A pattern of repeated dysregulation in response to reminders of the trauma. This dysregulation can occur in mood, behaviour, cognitive development, or relationships. The kind of behaviours exhibited include: confusion, attachment, and self-hatred.

Persistently altered expectancies. This includes: feeling negatively about oneself, not trusting caregivers, not expecting others to protect them, etc.

Functional impairment can occur in areas of education, family, friends, work, etc.

There is also research which has linked high levels of dissociation as a coping mechanism with children who have been through complex trauma.

It’s argued that it is important to have this diagnosis included in the DSM because often children who display these symptoms after going through complex trauma are given multiple other diagnoses such as attachment disorder, or conduct disorder. Having these diagnoses does not allow the child to get the help they really need, as they are being treated for something they may not have, or are not being treated at all. This issue can also add to the stigma behind some of these mental disorders.

(McDonald, et al., 2014)

If you want to look at the (simplified) DSM-5 criteria for PTSD for a comparison then go to this link. DTD is not included in the DSM at all, but it is a proposed mental disorder, with much research to back it up.

What do you all think about this research/ideas on DTD?

[filenesdebasement]

The All-New, Entirely Accurate, Impressionistic Pain Scale

1. What?

2. So it’s like, not really pain, you know, but you still kind of wish the body part in question would disappear for a while. Can we excise it? Is that OK? It’s, you know, bothersome.

3. OK, like, imagine if you still got relief from OTC painkillers. No, the “safe” dosage recommended on the bottle.

4. What are you, a wuss?

5. [finger guns]

6. You definitely went to a job interview like this once.

7. You’re totally fine. No, it’s fine. Really. Just as long as you don’t move.

8. That Time You Didn’t Have Access To Any Meds

9. You keep calling for your mother. You hate your mother.

10. You’re saving this one for a real emergency.

[slimedeity-deactivated20170422]

and always have mercy on yourself

[disabilityhealth]

Sometimes it seems like chronic illness has made me feel everything more intensely. Little things like a cup of warm tea or just seeing a dog on the street can brighten my day considerably, but disappointments can have a bigger impact than they ever used to, too.

I guess that’s what happens when you’re trying so hard to cling to the positive aspects of life while being so vulnerable and ill.

[lymefight]

Wow this is so true

[anchorsdxwn-deactivated20151214]

me: sad because I’m not productive me: not productive because I’m sad

[teded]

How Stress Affects the Brain

Are you sleeping restlessly, feeling irritable or moody, forgetting little things, and feeling overwhelmed and isolated? Don’t worry. We’ve all been there. You’re probably just stressed out. Stress isn’t always a bad thing. It can be handy for a burst of extra energy and focus, like when you’re playing a competitive sport, or have to speak in public. But when its continuous, the kind most of us face day in and day out, it actually begins to change your brain. Chronic stress, like being overworked or having arguments at home, can affect brain size, its structure, and how it functions, right down to the level of your genes.

Stress begins with something called the hypothalamus pituitary adrenal axis, series of interactions between endocrine glands in the brain and on the kidney, which controls your body’s reaction to stress. When your brain detects a stressful situation, your HPA axis is instantly activated and releases a hormone called cortisol, which primes your body for instant action. But high levels of cortisol over long periods of time wreak havoc on your brain. For example, chronic stress increases the activity level and number of neural connections in the amygdala, your brain’s fear center. And as levels of cortisol rise, electric signals in your hippocampus, the part of the brain associated with learning, memories, and stress control, deteriorate.

The hippocampus also inhibits the activity of the HPA axis, so when it weakens, so does your ability to control your stress. That’s not all, though. Cortisol can literally cause your brain to shrink in size.

Too much of it results in the loss of synaptic connections between neurons and the shrinking of your prefrontal cortex, the part of your brain the regulates behaviors like concentration, decision-making, judgement, and social interaction. It also leads to fewer new brain cells being made in the hippocampus. This means chronic stress might make it harder for you to learn and remember things, and also set the stage for more serious mental problems, like depression and eventually Alzheimer’s disease.

It’s not all bad news, though. There are many ways to reverse what cortisol does to your stressed brain. The most powerful weapons are exercise and meditation, which involves breathing deeply and being aware and focused on your surroundings. Both of these activities decrease your stress and increase the size of the hippocampus, thereby improving your memory.

So don’t feel defeated by the pressures of daily life. Get in control of your stress before it takes control of you.

From the TED-Ed Lesson How stress affects your brain - Madhumita Murgia

Animation by Andrew Zimbelman

[the-future-now-deactivated20170]

This might be the most high tech video-game inspired prosthetic arm we’ve ever seen

James Young, a 25-year-old biological scientist who lost his left arm and left leg in 2012 after falling under a train in London, just debuted a world first. On Saturday night at BodyHacking Con, a conference in Austin aimed at people interested in DIY alterations to the human body, Young showed off a futuristic prosthetic arm modeled after the one worn by Metal Gear Solid protagonist Venom Snake. With all of its features, his arm could be a game-changer.

Follow @the-future-now

[clovercoin]

I made myself a pretty rainbowriffic pain chart to print out and use for myself. I loved this chart I saw so much I just recreated a print-version for me to use at home and hand to my doctors to explain what my “pain level” is.

Today is sadly a 7-8 kinda day….

[vampiregerards]

*stays home* i should’ve gone out *goes out* i should’ve stayed home

[disabilityhealth]

When all of my symptoms flare up at once

[Gif of a person crouching down to pet a bunch of baby goats. They manage to push her over onto her back and they climb all over her.]

[rubyreed]

My friend told me they have BPD -- now what?

Since I’ve had several people ask me this question, I thought it warranted its own post. 

A lot of you have friends, partners or family members who have either recently been diagnosed or who’ve had a previous diagnosis of BPD and just “came out” to you. You want to help (and that’s awesome!) but you aren’t sure how. As someone who’s diagnosed with BPD (and MDD) here’s my advice:

1. Start with validation. 

The most important thing you can do for someone with BPD (or anyone, really) is to validate them. Basically, validating means recognizing what someone is going through in an empathetic way. You’d think that’d be easy to do, but most people screw it up! This video is really helpful in understanding how to be empathetic and validating:

2. Don’t try to relate. 

Often, in an effort to let someone know they’re not alone, we try to relate. The impulse comes from a good place, but it usually does more harm than good. Here’s a real-life example: once when I was in high school, I told a friend I was adopted. I just threw it out there because it came up in the conversation somehow and it clearly caught her off-guard. In an effort to bridge the gap she saw between us, she grasped at the first negative “secret” she could think of and blurted out “I had ringworm once!” Bless her heart.

If someone tells you they have BPD and your first response is to say something about yourself and your own suffering… just don’t. They might smile on the outside but on the inside they’re thinking:

Wow dude, way to make it about you. So you’re saying this huge thing I’m going through isn’t a big deal? Okay, that thing and my thing are not the SAME thing. You clearly don’t get it and I probably won’t open up to you about this again.

3. Don’t question the diagnosis. 

You may want to reassure your friend that they’ll be okay by pointing out that they’re not “that bad.” My dude, do NOT do this. This is a form of invalidation and it’s one of the worst things you can do to someone with BPD. In your head you may be trying to say, “I believe in you because you’re a strong and capable person” but what they’ll hear is “Wow you think you’re such a special snowflake and your problems aren’t even real. PLEASE.”

Also keep in mind that people with BPD are like glaciers. You only see the very tip of their symptoms that break through the surface. They are probably hiding a LOT more that they aren’t telling you about – and for good reason. There are a lot of BPD behaviors that aren’t pleasant and would be easily judged by others. So while your friend may not seem that bad to you, they could be practicing behaviors like:

compulsive gambling or impulsive overspending drug use, ODing, combining drugs in dangerous ways (like drinking on meds or mixing meds) risky sexual behavior  self harm (including behaviors that might not leave marks) disordered eating (they can be doing this even if they’re not severely over or under weight) etc.

Keep this in mind and don’t assume you know the whole picture.

4. Don’t try to GET the whole picture.

You’re probably curious about exactly why your friend was diagnosed with BPD, but do them a favor and don’t grill them about it or their symptoms. I mean, would you want to talk about the above behaviors over a Grand Slam at Denny’s? Because I sure as fuck don’t. Also, when you start asking for specifics, BPD cats feel like you don’t believe them and that they somehow have to “prove” their illness to you (or to themselves) which could lead them to up the ante on their dangerous behaviors. NOT GOOD. 

Also keep in mind that the “why” behind a BPD diagnosis isn’t a simple answer. It may be one they themselves never fully understand, but the big picture can and usually does involve painful memories like instances of sexual or physical abuse. These are issues your friend will probably be more comfortable talking about with their therapist and doctors.

5. Ask open-ended questions. 

Instead of focusing in specifics, ask broad questions that allow your friend to open up if they want to. Here are some good ideas:

How are things going?

How do you like your new therapy group?

Have you learned any new DBT skills that you like?

What can I help you with this week?

6. Treat them like a widow.

I know that sounds weird but stick with me. Recently, I had my first bonified lock-up in a psych ward. I reached out to two of my closest friends and they helped me. After I escaped (kidding) they continued to help me. One of those friends had lost both of her parents and said to me, “Look, you were there for me then and I’m here for you now.” And although those two scenarios are very different, it made me realize that the kind of help needed can be similar in a lot of ways. 

Here are some things you can do:

Offer to drive them to therapy or doctors visits.

Schedule coffee dates after their appointments so they can relax and have support.

Cook meals together – I think this has been one of the most helpful things for me, not only because it helps me eat well-rounded meals, but also because it’s a fun social activity that’s very low-stress.

Help them care for their pets, buy groceries or even clean up around the house.

Get them out of the house to do fun new things.

By no means should you push these things on people, but it is okay to push a tiny little bit. They will likely feel bad accepting any kind of help because they’ll feel like a burden, so push a little bit but try to be aware and back off if they seem genuinely uncomfortable. 

7. Don’t betray their trust. 

What your friend tells you about their mental illness stays between you and them. The fact that they told you at all really means they trust you – so don’t betray their trust.

In the event that your friend says or does something that makes you fear for their safety or someone else’s safety – tell them. Ask them to talk to you about it, then consider calling 1 [phone]. That’s the National Suicide Hotline, and the calls are completely confidential. Explain the scenario to them and they’ll tell you what you should do. This is a much better idea than violating your friend’s trust by disclosing things to other people they know in real life.

This is by no means a complete list of tips. When I first started typing it I had no idea it would be this long! I’d actually like to create a “part 2″ to this when I have time, so if you have questions or tips you think I should add, please message me!

[tiredbtw]

ah yes, my train of thought, or as i like to call it, the Anxiety Express