Of Chronic Illness, Depression, Socialisation, Loneliness, and Effort.

I’ve been writing and rewriting this in my mind for the last few days, and either it was time to write it out, or let it swallow me up.

Chronic illness, depression, and anxiety go hand in hand., Anyone who has a chronic illness will tell you.

When you have a chronic illness, life changes. Things you used to be able to do are no longer viable. You have to carefully plan things because you have to manage your energy levels.

A good way to describe the energy levels a chronic illness sufferer is “The Spoon Theory”, to which I will link below this post.

I suffer form a mild chronic illness. If you have read my previous posts, you know I suffer form chronic headaches. My headaches are at a very low level, and mostly manageable. I can function about 80% of the time normally.

However, just because it’s minor doesn’t mean it doesn’t cause issues.

Socialisation

Sometimes my headaches do flare up, which means I may have to cancel attending an event.

Imagine there’s an event you’re really looking forward to, a concert by your favourite music artist or group, a movie night or dinner out with friends, etc etc. Then, last second, you can’t go.

Sure, a normal person might arrange to make plans for another day.
But someone with a chronic illness can’t make definite plans, because they can never predict when their illness will flare up.

This is why I set most of the events I plan to go to as “Maybe” instead of “Yes” on Facebook. because I have no idea what my health will be like on that day.

And when I do have to cancel plans, I feel bad, like I am letting everyone else attending down, and it’s even worse when you are the organiser as you feel like you are letting everyone down.

Depression

The constant threat of having to cancel plans due to a pain flare up leads into anxiety and depression.

You start being anxious about dropping the mood at a social event you have been invited to. You fell like you are burden to everyone around you., so why bother going to an event in the first place?

This leads down a deep dark rabbit hole of circular thinking into depression.

You’ll bring the mood of a gathering down, people will resent you for it, so why bother going? What’s it going to matter? No one will miss you because no one cares about you.

Loneliness

And all of this feeds into loneliness, because you decide not to go, and you feel like you are all alone and that no one cares about you.

And this feeds again into the depression,

If no one cares about you, then what’s the point? Why bother living? What’s the point of doing anything?

Which leads to suicidal thoughts.

Would I ever actually kill myself? No, it’s not in my nature. But it crosses my mind a lot, because I’m sure that everyone’s life would be better off if I wasn’t around. Then I wouldn’t be a burden to anyone.

Effort

So you stay at home and just watch TV or play video games to try to distract yourself.

You either eat too much, or even though you are hungry and the fridge and cupboards have food, it’s too much effort to make something to eat.

It’s also too much effort to make yourself presentable, clean the house (that also comes under The Spoon Theory), etc.

And then this also feeds into depression because you hate yourself for not looking after yourself and your environment.

And in the end…

… you feel really lousy about yourself

Now, I’m sure you’ve seen those memes go around the internet about how eating healthy and going for a walk will cure your depression.

Those memes come from health nuts who follow people like The Food Babe and Gwyneth Paltrow and her Goop brand and believe that putting a jade egg up your butt will cure you.

Yes, there are medications we take to even out our moods and help with our brain chemistry. But that only fixes part of the problem, as the underlying issue is still there – the chronic illness.

And it’s this never ending loop of anxiety, depression, loneliness, and fear that keeps circling around in our heads day in and day out.

And the only thing we can do is to keep going on.

Seeking Help

We sufferers often do seek help and support.

I run a Facebook group for sufferers of chronic headaches and migraines. it’s a good place for people to seek help, support, information, and to vent.

(Although, I do tend to piss of the nephropathy crowd a bit, and we do kick out sellers and multi-level marketeers).

But, usually, we don’t overtly ask for help and support. We drop hints.

We say things like “Not feeling so well today” or “Taking a day off work” or “Feeling frustrated and angry” , or something similar.

Innocent remarks a normal person might make, but for chronic illness sufferers a cry for help.

Why don’t we ask for help straight up? Because we don’t want to be a burden on other people. We want to prove we are just like normal people and just make it through the day.

We don’t want to put other people out with our problems, with our suffering, and with out helplessness.

And so…

I hope this helps to clear things up about how chronic illness sufferers feel, and why they act the way they way they do.

If you have any questions, please feel free to ask. Will try to answer them as best as I can.

The Spoon Theory

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Domains/Website Transition (almost) Complete

So, all my domains have been moved off NetRegistry (yay).

I couldn’t do an export from my old WordPress site (it wouldn’t let me get to the login page to the admin portal so that I could export everything), so I had to recreate it from scratch.

Didn’t mind doing that as it let me recreate things fresh.

In any case, kozakis.net is up, akozakis.id.au will (hopefully by tomorrow) redirect to http://kozakis.net/kozakis/, and kozakis.id.au will soon follow.

Once that’s all set, I will cancel my NetRegistry account.

I finally won my complaint against NetRegistry and they are refunding me two months worth of invoices for the five weeks the VPS was down, and they won’t charge me for the next invoice.

This means I won’t be paying outrageous monthly prices for a VPS i don’t really need any more. Yay!

Living with an Invisible Illness

First Published on akozakis.id.au on 28/02/2012

Invisible illnesses.  You’ve probably heard about them or heard people mention them.  They come in all forms from depression to constant headaches.  They have no physical symptoms and, in most cases, people think you are faking or making it up.

However, they are real and this article is to show that not only does an invisible illness affect someone in serious ways, the scepticism of people to believe that one exists can also cause hardship and stress to the sufferer.

Throughout this article I will refer to my invisible illness, and how some people have reacted to it, and the reactions of some people in the medical community as well.

My illness is called Chronic Daily Headache Syndrome.  In my case, I have a headache 24 hours a day, seven days a week.  It is a pressure headache that sits mostly at the back half of my head and just changes in intensity.

Weather pressure changes can affect it (I can tell when a storm is building up), as can heat, lack of sleep, loud repeating noises (fire alarms, car alarms, building works, etc), the constant chatter of people talking (hence leaving parties/social gatherings early), exercise, and so on.  Stress can also affect my headache.  Music, TV shows, movies, etc, have very little to no impact.

I mention stress because this is a big factor.  I’m not talking about stress in the workplace, but rather the stress of people who think I am faking the headache to get out of something.

I can understand people who don’t understand what I am going through but are still supportive.  It is the ones who refuse to be supportive because they think I am making it up.  I have no physical symptoms and they have to take my word on it, but their instant reaction is that I am being a hypochondriac. And this is what causes the stress because I have to fight with them to try and make them believe that I have a problem.

I can tell them I am seeing a neurologist, that I am receiving treatments, and so on, but it tends to be all for naught, and this causes stress.

I can understand their viewpoint, as people often use headaches as an excuse to get out of things even when there is nothing wrong with them.  I’m not one of those people, and the passion with which I am explaining this issue to you should give you a clue that maybe this is real for me!

Sorry, got into as bit of a rant there, but this is the kind of situation I face all the time.  And it isn’t just me who faces this issue.  People with other invisible illnesses such as depression, bi-polar disorder, PTSD, and so forth face similar scepticism, and it gets tiring very fast to the point where we keep it to ourselves, that, for periods at a time, we stop socialising because we just can’t deal with people, or don’t feel like trying to explain ourselves in case we get into yet another argument.

I have seen some doctors who are sceptical about my condition because there are no physical symptoms.  It took me five years to get someone to order an MRI just to rule things out.

I saw a so-called headache specialist in Melbourne, supposedly the top of his field.  Apart from being extremely rude, dismissive, condescending, and claiming I was trying to rort the Centrelink system for receiving sickness allowance payments, he also, without doing or ordering any sort of tests, said I was a textbook case and prescribed me five different kinds of medicines to take all at once.

Well, the medicines made me lethargic, increased my heart rate, made me paranoid, and didn’t do a single thing for my headaches.  I tried to get a hold of the specialist after only being on the medicines for a few days but his secretary wouldn’t put me through and he didn’t return my call, so I took myself off the medicines before I ended up in hospital from all the side-effects.  I felt so much better once the drugs were out of my system.

I later learned from my chiropractor that this specialist was infamous for prescribing drugs, and once the course of drug treatment was done the patient’s headaches would come back.

So, for all the specialist out there, if we are seeing you it’s because we have exhausted all other options, we are fed up, stressed out, frustrated, and just want it to end.  Don’t be dismissive, don’t be rude, don’t be condescending, and don’t take shortcuts.   Do what you must do to help us find the cause and cure the illness, or at least manage it.

In closing, I would like to say thank you for reading, and I hope this provides some understanding to people of how invisible illnesses affect those who have them, and hopefully through understanding you can help relieve some of the stress your friend/co-worker/family member deals with.

Steve Jobs, Apple, and Influences

First published on akozakis.id.au on 2011/10/06

“Oh great”, you’re probably thinking, “not another post from a nobody on Steve Jobs.  What makes this one special?”

Well, nothing makes it special, except that it is my thoughts and experiences about Apple, their products, and Steve Jobs.

As you have probably heard, it being all over the web-o-sphere, Steve Jobs passed away today, losing his battle with pancreatic cancer.

It feels surreal.

My first computer was an Apple //c, and on it I learned to program in BASIC and learned a little bit about machine code.  I also fell in love with computer gaming, and, specifically, computer role-playing games, Ultima III and Bard’s Tale I being the first two CRPG’s I ever played.

The computer also got me interested, and paved my path, into the IT field.

So, in a way, Steve Jobs is responsible for where I have ended up today, and this is my tribute to him.

Whether you like or hate Apple and it’s products, there is no denying that Steve Jobs was a major force in the field of computing.

As to what this means for Apple in the future, who is to say.  There’s a lot of Doomsayers out there saying Apple will not survive without Steve Jobs at the forefront.

In my opinion, Apple will continue going strong, as the current CEO has been running Apple for the last year or so.  The designers and engineers are still working for Apple.  I have no doubt that Apple will weather the storm, and the stocks will climb up (and no, I am not fortunate enough to own Apple stock).

It is the end of an era in one way, but the beginning of another, for Apple to show us that they can continue, that the company is more than just one man.

Rest in peace, Steve Jobs.  You will be missed.

And thank you, for everything.