My 6 Year Anniversary of Having ME/CFS

Well, this month marks six years since I was first diagnosed as having Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and I thought I might write a bit of a reflection on the years since I got sick. When I was 18 years old, I was in year 12 at school (which is the final year for us Aussies). I was doing my VCE, and training with the circus at least five nights a week from 4pm-7pm (training could include sessions during the day, and weekends when preparing for a show). In the circus, I trained in many skills including tight wire, running, acrobatics, palates, ballet, modern dance/funk/hip-hop, juggling, plate spinning, and hula hoops. I took singing lessons once a week, and was in the school choir and juggle club, performing in both school productions and eisteddfods. I was learning to drive, and enjoyed making artwork as a hobby (I had been forced to drop art as a school subject even though I had loved and excelled at it because the classes were held at the same time as English literature classes, and I preferred the latter!) My favourite subjects at school were psychology and literature, and I was getting very good grades in them (I worked hard at school, and always managed to achieve decent grades in everything I studied). I wasn't overly into fashion, but I used to paint tiny pictures on my fingernails in nail polish - like flowers and tiny hearts. I was leading an extremely active life, and was looking forward to getting a decent ENTER score and going to university to study either psychology or arts. 

When I first got sick, I thought I had tonsilitis, or some kind of other underlying infection. It was like I was coming down with the flu - only it never fully came, and I never got any better. I was aching all over, and feeling sick. I was sleeping all the time, but I was still always unbelievably tired. I was headachy and sick, and had a sore throat, and my brain was so foggy I couldn't seem to think straight or remember things! My doctors and specialists did a gazillion tests, eventually coming to the conclusion that I had ME/CFS. Upon hearing their diagnosis, I went into a sort of denial.  My teenage self was sure I didn't have something that would last months or years! I was gonna get better - somehow they had gotten it wrong.


Not long after I was diagnosed with ME/CFS, my doctor put me on antidepressants, as I was finding it very hard to cope with all of the changes that were occurring in my life. As well as dealing with the many varied symptoms of my illness, I could no longer do any of the things I had previously loved to do! My hands were to achy, weak and shaky for me to write for long, or to draw or paint (on either canvas/paper or my fingernails); I had to try to type up notes for school during times when I had enough energy to do so, rather than write them; I had to give up learning to drive because my concentration was so affected; and I couldn't read and absorb text very well at all (although I could get by reading the same sentence several times and really trying to take it in). I was struggling and missing a lot of school, and some teachers and other students were putting pressure on me because I was never there. I had to leave the choir because of the time it now took me to get through the bare minimum of my school work, and because of my frequent absences from rehearsal. I could barely  manage an hour of circus training every few nights, and they didn't understand ME/CFS. I was called lazy, and uncommitted by many people in many areas of my life.


So many people just didn't understand what ME/CFS is, and what it does to a person. My whole life had changed and I wasn't coping very well at all. If there were support services for people with ME/CFS around back then, I didn't know about them. (If I had have known about and had access to this, for example, I think it would have made my school life a lot easier!)

Dealing with the lack of understanding and lack of belief in my illness was very difficult, and I soon stopped telling friends about my diagnosis - making excuses from my lack of energy and constant illness, and trying to hide it. There were people who helped me out, though - my family were very supportive, and some of my teachers were as well. Without their help I never would've graduated from high school.


I ended up getting a high enough ENTER score to get into the course I wanted to get into - the Bachelor of Behavioural Science. I figured I may as well try to study while I was sick. I didn't want to put my life completely on hold and do nothing! I thought I'd get better pretty soon - after all, one of my doctors had said some people are better within a year, and I didn't expect my recovery to take even that long. I had been a pretty active person before, so I should weather illness better than other people, I thought.

My university course was full time, but had a low number of contact hours. I was able to go to class for an hour or two, then come home (with the help of Kecap's lovely driving) and sleep before going back for an hour or two in the afternoon. I worked my ass off when I was feeling up to it, and managed to pass my subjects quite well. I was especially proud of my achievements because I knew how hard I had worked and how hard it was for me to just get out of bed every day. Surprisingly, my first-year marks were so good, I was invited to join an Honours Society. I felt pretty special - they sent me a lapel pin and everything! 

At the end of first year, I was still sure I'd get better before the following uni year started... but I didn't. For the last two years of my course, I continued to work as hard as I possibly could. I was unable to do much other than lie on the couch and study/sleep, so I alternated between these two activities. I wasn't up to going out, other than to sit in on an hour or two of classes at a time. My university videoed most lectures for me, so that I could watch them when I was feeling up to it, and so I didn't have to come into the uni for every lecture.


Even short trips with Kecap to buy milk at the supermarket saw me staggering in like a zombie, grabbing the milk, and trying not to pass out because I was so tired and dizzy. It was embarrassing and upsetting to me that I had no social life at all (especially when my uni friends were all going out and having fun), but it wasn't something I could help. I tried to keep up with my artwork at times when I had the energy to do so - I even won some prizes with some paintings I did of orchids. It's very hard to paint and draw when your hands don't want to co-operate. 

By the end of my third year of uni, I was offered a place in honours in the city - something that I'd long dreamed of doing. I really didn't want to pass up the opportunity, and left it to the last minute to defer my study (in case I got better suddenly before the enrolment deadline). I ended up deferring study for a year - thinking that'd give me a whole year to get better. I'd been sick a long time - it had to end sooner or later, and then I could start really living again. Two of my friends completed honours that year; I'm eternally jealous. Although, neither of them talk to me any more. You tend to grow apart from people when you can't go anywhere or do anything much, sadly.


So, I had a year without study, which gave me the energy to shop sometimes, and to go out. It was during this time that I really discovered computers, the internet and computer art. These gave me a creative avenue to express myself without exerting too much energy, and people to chat to! By the end of that year, I'd accepted that I wouldn't be able to continue my study and do honours year (it broke my heart =(). The uni could no longer hold my place after one year of deferment, but I was told that I could apply to do honours at some later time in the future if I wanted to (although there was no guarantee I'd be accepted.)


It was also during that year that I decided to apply for Centrelink benefits - I needed money to live, and was not well enough to get a job at that time. Applying for this was the most difficult and stressful thing I have ever done in my entire life. The attitudes that the people I was forced to deal with held towards my illness were just appalling, as was the way I was treated by them. I was actually told by a job capacity assessor that ME/CFS was not a recognized illness, and that it was all in my head. She suggested that if I found a job I really liked, my ME/CFS would disappear -.-. I spent almost two years having to attend fortnightly meetings with them, during which I had to justify to them why I wasn't working, showing them that I'd applied for jobs (even though if I'd been offered any of these jobs I never would've been able to actually work at them!), and having my medical certificates and letters disputed. It was unfair, discriminatory and disgusting. I often felt like just giving up and forgetting the money - starving to death in the gutter seemed a much brighter alternative to attending these meetings.


Since then, (through much fighting) I have had my ME/CFS properly recognised by Centrelink, and I've been placed on a disability support pension. That means I have an income, and don't have to fight or attend meetings with [often ridiculously uneducated] people [who are placed in positions of power]. I continue to live with my parents and sister, with my mother (who is known here as Kecap) caring for me. I now use a wheelchair (I get pushed around - I got an approved disability parking thingy!) so I can go out for longer than half an hour at a time (walking just totally tires me out). I'm currently upset by the fact that I have very little independence - I want an electric mobility scooter so I can go on short trips by myself - but they cost a lot, and in order to get financial assistance I have to go see my doctor, then an occupational therapist. I'm nervous of telling new people about my life and my condition. There's still such an insane lack of understanding about ME/CFS, and not being understood is a dagger through your heart when you're already vulnerable.

My interest in computer art has grown massively since I became sick. I have recently had some of my artwork featured in the Three Rings online multi-player game, Puzzle Pirates. Also, this year, I have started doing an online media course in 3D art and animation for film, games and television! It is awesome, but it is taking me a long time to get through the coursework. Luckily, I can study at my own pace, and as the course is online, I don't have to waste any energy going out to classes. =D  


Online support services have been a godsend to me - especially this last year. I have recently joined the website Foggy Friends - which has a forum and a chat room filled with supportive and understanding sufferers, carers and friends. The websites of ME/CFS Australia and the state sites are also a wealth of local information. I also recently learned about Spoon Theory - which, while not being written specifically for ME/CFS, is a great way of explaining the impact of illnesses like this on a sufferer's life! 

Sometimes it seems like my life is incredibly hard, and that I can't keep going. But I have a good life really - it's a better life than a lot of people with ME/CFS have. I'm very thankful that I can shower every day (although sometimes I have to sit), and that I can go out in my wheelchair and see the world. I'm very glad I can type and talk to people online. I'm very glad I'm not bedridden, that I can think, dream, imagine, translate and share my ideas with others using my computer and iPod. I'm very glad I have an understanding doctor who can help me out, and understanding online friends whom I can talk to about anything and everything! I'm very glad I have a caring family who love and care for me, despite all the difficulties my illness causes. No matter how sick I get, I'm still the same creative and resourceful gal I was before I got sick. I just have to find different ways of using my skills now =D.

I hope I get better soon, and I still believe that it could happen any day - but I'm no longer waiting for my illness to vanish so that I can pick up my life where I left off. I'm now of the opinion that I should try to live the absolute best life that I can possibly live right now, with ME/CFS. Although it's difficult, and it's a mammoth struggle every day, I'm proud of the way I'm fighting this!


~Adrielle =)

Some ME/CFS links:
* ME/CFS fact sheet
* Foggy Friends
* ME/CFS Australia
* Spoon Theory
* Youth Pack


My Art:
* On DeviantArt
* Adrielle Site
* Puzzle Pirates Related Art