Sunday, May 27, 2012

Floral Nail Art

I painted my nails last night =D. I used some Manicare Nail Art pens (in black, gold, purple and white; they can be a pain to prime and use, actually - but when you do get them working, they are pretty nice - it is just really hard to get them working!), BYS Nail Art laquer (a pink and a purple), Coral Colours blue nail enamel, and my favourite Revlon Glimmer Gloss (I have 5 colours - I used pink and blue in this design). It has been years since I have done a design like this, but I think it turned out cute =D

~Ad =)

Super Addy

So, over the last couple of weeks, I have been drawing Super Addy - myself as a superhero =D. The idea came to me because I was feeling so bad with EDS, arthritis, ME/CFS and FMS. I thought - if I was a superhero, I would have magical braces that looked pretty and actually worked - and of course, I would be able to fly and have a cape as well! 

The Superhero Addy idea seemed like a good opportunity to practice using some of the tools on photoshop that I haven't used before. Here is how the experiment went:

I like the way she turned out =D
~Addy =)

Tuesday, May 15, 2012

Just a Little Experiment in Shading

Yesterday I tried out a different shading technique. Here is how the experiment went:

I'm not sure whether I like it or not... I think I prefer my scribbly way of colouring things in =D 

~Ad =)

Monday, May 14, 2012

Some Pics of a Bird in a Tree

Yep - this post is pretty much what the title says! I don't know what sort of bird this is - it looks like a wattle bird of some kind. I like birds =D

~Adrielle =) 

Franklin, Shelley, Moke, and Our Garden =)

Today, it was sunny outside, and I felt up to sitting in the garden for a little while. I took our little turtles, Franklin and Shelley, out for a play in the garden =D

This is Shelley - 

And this is Franklin - 
He found a fence!  Poor little guy - I had to move it for him =D
Moke came out to lie in the sun too (on the turtles' towel!) - 

It was nice sitting out there =) The boys walked right around the garden, while Moke snoozed. 
Shelley helped Kecap with the washing... 
Franklin likes to stand perfectly still in the garden - to blend in with the plants =D
Shelley found the fence too! 
Franklin sniffing!
Franklin came inside with his fashionable new headwear... 
I love our backyard, and our turtles, and Moke! We live in an awesome place =D

~Adrielle =) 

Tuesday, May 8, 2012

The Emotional Burden of Invisible Illness and Disability

Further to my last post, as May is Ehlers-Danlos Syndrome (EDS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and Arthritis awareness month, I present to you another blog post on my invisible disability =). 

I suffer from several conditions. I was first diagnosed with post-viral chronic fatigue when I was 11 years old. My symptoms improved after a few months, and I thought I was over the illness. However, my symptoms returned when I was 14. This time, I was diagnosed with 'idiopathic chronic fatigue'. Again, my symptoms improved (although, it took a lot longer than it had the previous time). At the age of 18, I became sick again with this most recent bout of the same set of symptoms. I was diagnosed with ME/CFS around 7 years ago, and have not had significant improvement this time around.

In 2010, I suffered my worst symptom flare to date. It was shortly after this that I was diagnosed with fibromyalgia and Ehlers-Danlos syndrome (I had been showing symptoms of EDS since I was in primary school, but had never been formerly diagnosed - it was on file as a query). Also, osteoarthritis (thought to be secondary to the EDS) began to show on bone scans of my hips, knee and foot. 

Basically, because of the combination of these illnesses, I spend every day in a lot of pain, with severe fatigue, and with joints that are prone to subluxation and dislocation at the slightest touch or movement. On any given day, I can also have a combination of poor co-ordination, memory and concentration problems, gastrointestinal problems, vision disturbances, poor balance, nausea, dizziness, involuntary muscle spasms/twitches (that my cat hates - she stares at my twitching limbs! It is funny =D), headaches, flu-like symptoms, and other unpleasantness. 

My illnesses and resulting disability can be difficult for others to understand because they are largely invisible. People who do not see me daily/help with my daily care are usually largely unaware of the severity of the pain, sickness, fatigue and physical and cognitive impairments from which I suffer, and frequently assume that I am 'cured' because they see me for a couple of hours on a good day. Unfortunately, this is not the case. 

People with invisible disabilities mourn the loss of their freedom, ability, and independence, as well as the loss of their old life. We mourn our former dreams and plans, and our lost potential, and go through a grieving process for our former selves. I know that personally I spent several years in denial – thinking that the doctors had misdiagnosed me, and that I would get better by the time I had finished my university course. Unfortunately, this didn’t happen. Feelings of anger and depression, and the realization that this wasn’t going to go away followed. I felt that I was a huge financial, physical and emotional burden on my family, and that I wasn’t worth the resources it was taking to look after me. 

In the last few years, however, I have really come to accept my disability, and find new things that I can do within my new-found limitations. I now realize that I am a worthwhile person with many talents and intelligence, and I want to make a positive difference to the lives of other people with invisible illness through being there to support my friends and by raising public awareness of our plights. It is unfortunate that many of us do not have the energy to speak up and advocate for ourselves. Now that I am receiving proper treatment, I do – so it is for the benefit of all of us that I wish to speak out about invisible disability, and hopefully gain understanding from as many healthy people as possible!

Anyway, aside from that intriguing epiphany, getting through the emotional turmoil of being told you have a bunch of long-term and permanent diagnoses is extremely difficult – both for me and for my family. My ability to cope varies on a day to day basis. Luckily, I have a strong and supportive network of understanding family, friends, Twittering spoonies, and medical professionals who respect and understand what I am going through, and who can share my little triumphs and halve my woes with me! <3

~Adrielle =) 

My Invisible Illness!

A Bit of Background on Me and My Life with Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis, Fibromyalgia, Osteoarthritis, (and Awesomeness!)

Hi! I am AmazinAdrielle. I am 26 years old, and I live in Australia. Despite having been chronically ill for many years, I completed my final year of high school, and went on to complete my Behavioural Science degree at university, and was even invited to join an international honour society. When my medical condition worsened, I was unable to continue with honours year at university, even though I was offered a place in the competitive class in the city. It was disappointing, but couldn't be helped. I am now studying 3D art and animation for films, games and television via a flexible online course option. I have always had a massive interest in art - but saw it as more of a hobby before I got sick.

Before my illness became too severe, I enjoyed painting and volunteering my artistic services in the local community. I was also a performer in the circus, studied dance, singing, drama, acrobatics, won talent contests, did pilates, and was really fit. Unfortunately, at the age of 18, I had to give up all of these activities due to the growing severity of my illness. 

On a good day, I look almost normal (despite needing to use crutches, my motorized mobility scooter, or my wheelchair to get around, and a chair to shower and dress, and I need to wear braces and tapes to support my joints). I am able to sit up, eat and drink, type, and follow a conversation. I am fine as long as I don't need to stand up for long, don't have to sit in a chair that doesn't support my back and arms, and don't have to walk too far, and provided that I can sleep for some of the day. 

However, on a bad day, I am stuck in bed, unable to brush my hair, unable to shower myself, have trouble walking the short distance to the bathroom, and have difficulty brushing my teeth. I can't pour drinks (mainly due to pain, weakness, lack of co-ordination and problems with depth perception). I randomly dislocate multiple joints, multiple times in a day. I have problems with vision, tremors and numbness, severe pain all over, and may be too fatigued and sore to chew and eat, or in too much pain to hold a knife and fork, or to write with a pen. Because of the memory and concentration problems that I have on bad days, I am unable to follow a conversation. I may also have severe nausea, and tummy troubles. 

Most often, I am somewhere in between these two extremes. It is frustrating that I cannot choose which days will be good and which days will be bad. I cannot rest up before-hand to ensure a good day - unfortunately, it just doesn't work that way. The unpredictability of my illness, along with its general severity, means that I am unable to work, and I had to give up volunteering at a local second-hand store around two years ago. I now volunteer online on support forums, game sites, and other sites, as I am usually able to sit up and use my computer and/or iPad - even if it is from bed. The people I chat to online can't see that I am in pjs and have unbrushed hair! 

During my longest lasting patch of bad days (which lasted several months in 2010), I was confined to a bed, and lost the ability to use my hands - which meant that I could not type or use my laptop, couldn't draw, couldn't do much of anything at all, really! This was extremely difficult (not to mention scary! Although, I think I was sick enough that I didn't really take in how bad things were). My mum set up a sofa bed in our lounge room so that I could feel like part of the family because I was becoming so lonely in my room. Even though I couldn't take part in life, I could watch and listen while I was awake, and I felt a lot less isolated. 

When I finally started to come good after that (due in part to a combination of medications that had bad side effects), it felt so amazing to go outside! I didn't have the balance to walk around my backyard on my own, so I used a 'leaning broom' (a broom. The bristles made a good anchor on the base, and I would walk around holding onto the handle). When my doctor found out about this, she was not impressed - apparently it is really dangerous for someone with my condition to risk falling with only a broom to lean on... so I tried a walking stick. This did not go well. I learned the hard way that when the EDS foundation said patients shouldn't use walking sticks, there was a reason... severe hand and wrist instability. I now use elbow crutches with specially designed handles to evenly distribute weight on my hands and wrists. They are much safer, and feel much more comfortable! I also decorate them, to make them look nicer than the plain grey. For Christmas, I covered them in battery-operated flashing lights! At the moment, they have glitter flower and butterfly stickers on them. 

Now that I can use my hands again, my hobbies include creating digital and traditional artwork, photography, sewing, crafting, volunteering online, and playing online games. It's a massive change from my old lifestyle, but still very rewarding, and awesome fun! 

Invisible illnesses are hard battles to fight - not just because of the debilitating pain, sickness and suffering of illnesses themselves, but also because people outside of our immediate families/close friends don't see most of what us people with invisible illnesses go through, and don't understand. 

~Adrielle =)

Friday, May 4, 2012

Because Sometimes, the Baconians Fight Back!

And often, the Adrielle is crazy =D 

Made with the awesomely free
Inspired by this =D

~Ad =)