Tuesday, May 8, 2012

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 =)