Fibro & Me
In 2004 I graduated with a Bachelor of Creative Arts in Theatre. That year I had participated in 14 different shows. Some were single performances, other longer runs, many for my degree, lots just to help out friends and a couple professionally. I loved the theatre. I loved working in the theatre. I had studied in Sydney but had grown up in Melbourne and that's where my family was. There was an opportunity to return to Melbourne so I returned with the plan of learning about the Melbourne theatre scene. It wasn't long though before I realised something was wrong. I thought it was just tiredness left over from the intensity of study. But it didn't go away. I had begun to get sharp pain in my elbows - somethings like tennis elbow, but in both elbows at once. The pain was intense - painful and difficult to diagnose - and then it began to spread.
Over the years it spread from elbows, up to my neck, down my back and to my knees. Thankfully it didn't go any further. But initially it took 6 months of doctors visits while still trying to work part time before I was finally diagnosed with fibromyalgia late 2005 - I couldn't even pronounce it at first. I now think I was probably already sick in my final year of study - there are some events which make a lot more sense in this light now. But when I was diagnosed I now see how poorly I was informed about what it was or how to manage it. I just did what the doctor said and took what the doctor said to. And that was it for a while.
Gradually I tried to find out other things about it myself but it was slow and I was tired and in pain and was loosing everything about my life that I'd had up till that point. Since this time I've tried so many things, including medications, natural remedies, diets, pain clinics and changed doctors numerous times. I've spent hours in different types of therapy. I've been treated for depression and anxiety and I've had panic attacks.
I've spent so much money looking for improvements. I've been told I'm cured and to go back to my life. I've crashed and burned out after discovering they were incorrect.
Although I'm grateful for the Australian medical and welfare system, I'm also aware that I sit in the middle - I'm not quite sick enough to qualify for long term assistance given it's classification but I've also spent so much time when I am much to sick to actually be able to provide for my self without assistance.
Even now, when I appear to be at one of the healthiest points I've been since diagnosed everything takes energy, planning and maintenance. I live by a pretty strict routines including diet, sleep and exercise (well, mostly). Pretty much every activity has to be given the weighting that 'work' would in my life - e.g. even social engagements, while enjoyable, must to be prepared for, recovered from and take up a certain amount of energy and pain that must be accounted for).
I've had to completely adjust my life numerous times - I've given up jobs I've loved and passed on opportunities I wanted. I've tearfully resigned from things before I got too involved and after that time has long passed. I've tried to start at least two if not three career paths that I've studied for. I've lost touch with friends and I've not made new ones. I've missed many events, parties, concerts, nights out, dinners out, movies, shows and more. I've barely made it out of the house for days on end. I've had to grieve the life I'd hoped to have and try to come to terms with probably being like this forever. I've lost significant relationships. I pretty much live, work, rest and recover at home, with carefully planned times of other things. My life is not as I ever would have expected.
But it also isn't all bad - it does just take a lot of work and planning. (I'm not really into spontaneity anymore unfortunately). While this is probably all seems a bit depressing, it is meant to show some of the reality of fibro which is both a bit difficult and a bit depressing at times - it is a complete and utter re-shuffling of life. Hopefully though, the rest of this website shows the more interesting and active parts of my life (which do exist - they are just measured and generally happen during the regular day time hours:).
I am attempting to share some experiences on my tumblr blog '(incoherent) ramblings of the chronically ill' - but its a slow process for me to feel comfortable with sharing this experience. This blog is not a 'how to' but a sharing of thoughts and inexperiences. I'm slowly learning to be more open and honest. Here are some links to some of the more specific posts I've made relating to fibromyalgia:
* Low Level Laser Therapy - the miracle I've been waiting for - posted 2017 after dramatic improvements. It's not a sure thing but it could be worth trying.
* I've been trying a new way of eating and the positive benefits. - posted late 2016- some of the recent practical things I'm trying to improve my health
* Writing as the Next Brave Step - 6 posts from journal writing I've done over time, posted late 2015 - these are short posts about the thoughts and feelings I've had while being unwell. They aren't what I always feel but they are thoughts that unfortunately I have to keep dealing with. I began sharing some of these thoughts in the lead up to my first exhibition in 2015. My first attempt can be seen below titled 'Visual Thoughts'.
Writing about Fibromyalgia
Made in response to having fibromyalgia:
Pieces of Self: Feelings of Fibromyalgia exhibition, book, video
In 2015 I had my first solo exhibition titled 'Pieces of Self: Feelings of Fibromyalgia' and it was an opportunity for me to try to express some of what this experience of having fibro had been like. There are images on one of my gallery page as well as on Pinterest and Flickr.
However, if you'd like a bit more insight, I have put together an artists talk on video which is just over 10mins where I got into a small amount of detail for a few of the pieces from that exhibition. Press play on the video to the right, or you can see it through youtube.
I put this video together after I'd printed a few copies of a small photo book of the exhibition. It is a small way for me to continue the conversation about chronic ill-health that the exhibition space seem to provide for people; those with fibro, those with other types of ill-health experiences (mental & physical) and those who have not had this experience. Currently I am not printing any more copies. But contact me if you are interested as I may still have one or two lying around.
'So, how do you feel today?'
This is both deadly serious yet also quite a bit tongue in cheek.
I felt like putting this together after I got a bit frustrated by doctors asking me how I was when they first called that you were next to see them. I am at the doctors therefore it would seem that something is not right, so the question is how much do you want me to say as we briskly walk to your office????.
It also taps into the very difficult answer such a seemingly innocent question can have. You can find other things I've done on my You Tube channel. Published 2014.
My story: 4 short videos
A series of 4 short videos about my experience of fibromyalgia and how art and creativity have encouraged me through ill health and the different things I've been able to do as my health has changed. Published 2014.