Fibro & Me
In 2004 I completed 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 had been stage manager, director, lighting design & operator, props coordinator and I forget what else.
I love 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 once I'd completed my study 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 leftover from the intensity of 3 years of study. But it didn't go away. I had begun to get sharp pains 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. Initially, it took 6 months of doctors visits while still trying to persist with part-time work before I was diagnosed with fibromyalgia late 2005 (actually compared to others experiences, 6 months is quite short) - I couldn't even pronounce it at first. I now believe I had begun to show significant symptoms in my final year of study - there were some things that happened in that final year that were very out of character for me and which make a lot more sense in light of the fibro. Looking back, I now see how poorly informed I was when I was diagnosed, and how inadequate the care was that the doctor provided. I did what the doctor said and took what the doctor said to and with pretty much no further information about anything about fibro, I believed him when he said this treatment alone should help.
Gradually though, I began to research it myself, but it was slow going because I was tired and in pain and was losing 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. I've spent way too much money on things that were ridiculous but that I thought I should try in order to have done everything I possibly could to 'get back to normal'.
Although I'm grateful for the Australian medical and welfare system, I'm also aware that I sit in the middle - apparently I've never quite been sick enough to qualify for long term assistance (although I now question this and believe I was given some very poor advice early on and that actually, I did qualify for long term assistance) but I've also spent so much time when I was physically much too unwell to actually be able to provide for my self. This is a place that many others also reside and a dilemma many others face.
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 pretty strict routines including diet, sleep and exercise when possible (but nothing too strenuous or that will put pressure on my joints...). Pretty much every activity has to be given the weighting that 'work' would in my life - e.g. even social engagements, while enjoyable, must be prepared for, recovered from, as they take up a certain amount of energy and pain that must be accounted for). I'm aware this period may not last even though I am doing everything I can to prolong it. I am extremely aware of my body and am constantly on heightened alert for signs and symptoms at all times.
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 long after that time has passed. I've tried to start at least two if not three career paths that I've studied for (actually I'm possibly on number 4 now). 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, birthdays, shows, job opportunities, 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 into spontaneity). While this probably all seems a bit depressing, it is meant to show some of the reality of fibro which is both difficult and depressing at times - it requires 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 followed by a long time trying to get ready to sleep).
I used to share some of my experiences of ill health through my tumblr blog '(incoherent) ramblings of the chronically ill' - but has been and still is a slow process for me to learn how to be comfortable with this process. I've since decided to use this blog, Instagram and facebook predominately to share. The Tumblr blog wasn't a 'how to' but a sharing of thoughts and experiences.
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 (and it both is and isn't a miracle) but it could be worth trying if you are looking for pain relief.
* 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 was one way for me to continue the conversation about chronic ill-health that the exhibition space seemed 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, or if there is interest may consider other options.
'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 in the walk from the waiting room to their office. Sure its normal chit chat small talk territory but I am at the doctor's, 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.