It struck me as many of my friends headed off to TINA this year, that I hadn't realised how quickly the last nightmarish 12 months of my life have drawn on and on. It was the months leading into TINA last year that things with my own health crept further and further out of control, and that the health of a few other key members of my family and friend support structure also became bigger issues. The few weeks leading into TINA were the final straw though, where I could no longer even 'cope' trying to bring the festival into some kind of shape to do it some justice before my body and mind completely gave out. Even though I travelled to Newcastle for the festival I spent much of the time in bed and the rest in a half-asleep state, completely in a fog. When I got home, I collapsed. That was a year ago.
Since then life has been... I don't know. Up and down isn't quite the right description. For the most part, it's monotony. But there have been stages. When I first came home from TINA it was weeks in bed, then trying to somehow 'get on with it', which is what you do when you're ashamed to be sick without an official, concrete diagnosis. For a while, I even did manage to cope in some form. I didn't have a steady job, and I had to go on unemployment, but it was always with the view to slowing down. Somewhere around Christmas my doctor finally honed in on an official diagnosis of Chronic Fatigue Syndrome. I was sent off to a psychiatrist to work on a program of medication and pain management.
My symptoms were still yo-yo-ing off the charts. When stress came on, I coped less. Somehow I had still ended up with the frame of mind that I could just function in bursts - work on a project like our magazines, then deal with the full body/mind collapse that rendered me completely useless afterwards. It's about the most destructive way to manage my illness, which is what I was about to learn.
Leading into our planned project for MICF 07 I knew that my health was getting worse, but I thought that this was just how my system worked. For as far back as I can remember, when I have worked on events or projects I get sick just after they are over. As anyone who works with deadlines can attest to, you go crazy for a while, then let yourself recover when your time is your own again. I thought that my body acting this way was normal. I knew it hadn't managed to make it all the way through to the end of TINA, but this was the exception rather than the rule. Even for MIFF the previous year I had made it to the production of the magazine, but not quite the end of the festival to distribute the hard work. What I didn't recognise at that point, was that I had been getting progressively worse. As someone who works fairly autonomously, strives for high results and places a lot of personal pressure on myself, I had kept thinking that the last falter, the last struggle, was as low as I could go. That it had to get better from here. That I would go back to 'normal' in some way.
MICF 07 was designed to make me stop. It was my body's final lesson to myself. If I hadn't listened before, if I hadn't heard and felt that my system couldn't keep up with what I was asking of it, then it would have to give out completely. Leading into festival was a blur, there was so much to be done, a bigger team than ever and I was trying to teach multiple people various aspects of roles that had only ever been done by myself previously. Add to that the pressure happening in my personal life, and I was a pressure cooker.
Rather than feeling like I was getting help from my partner, team-mates and friends, I started to feel their doubt. I knew (and it was discussed out loud) that there were people expecting me to fail. People who felt I wasn't capeable of getting the project done. Instead of feeling like they were offering me a way to achieve what really mattered to me - being able to finish a project which made me feel I wasn't a complete failure after TINA - I felt attacked. The question didn't seem to be 'are you okay, can we help to make this happen?', it was 'why can't you accept you're just not good enough to do this?'.
On opening night of the festival, right as the project was supposed to be heading into overdrive, I crashed. Personal circumstances pushed my stress levels beyond anything I'd felt before and I snapped. At least that's how it felt; like I had broken to the core. The sheer mass of what lay before me to be done, the total lack of support, the effort it had taken to keep pushing on day after day after day was too much. I hadn't accepted the diagnosis I'd been given, and I hadn't listened to my body warning me it had no fuel left. My system completely shut down. I went from out-of-control to zombie within 24hrs. I left my partner to figure out what to do with the magazine, I took to bed and I tried to keep willing myself to live. It's funny, even when your life has come to that you don't lose that inner voice that keeps you connected to who you have been for so long. I remember lying there, humiliated by what I had become, by my lack of control, my failure, and thinking 'oh for God's sake... you can't really be thinking about suicide. What kind of middle-class twat are you that you have professional failure as a lynchpin of a breakdown?'
Unfortunately, even though that voice stays with you, it doesn't stop your feelings of humiliation. It doesn't control you thinking, with deep shame, about what other people must think of you. It doesn't stop you from thinking about how people will respect you after you've put them through the heartache and work and trouble of the failed project. Or how you're ever going to get them to trust you enough to work with you again. It doesn't stop you feeling like all your good work has disappeared without a trace because you didn't keep up to the pace you set yourself. And there's no-one else to blame. You don't blame other people for being angry with you, but there's no way they could understand how angry you are with yourself, which has got to be so much worse than anything they could throw at you.
Living through the three weeks watching other people mop up the mess I had made, relationships imploding all around me, was the most horrible time of my life. I felt useless and powerless, but went through stages of trying to pull it together and help, in any small way. All those little efforts left me in even more pain as my body pushed me back into bed and my mind shut down. I could see my partner trying not to hate me for putting him in the position I had, but he wasn't coping with the enormous pressure of trying to work full time, go to university, take care of me, put out a magazine and manage all the people we had drawn into the project with us. People were angry, and it was him in the frontline accepting the flak for the situation we were in. It was impossible for that not to come between us at a time when I needed him more than ever.
As the work died down, I got serious about getting help. I couldn't ignore the disaster that had just happened, and even in my current state I could recognise how serious the situation was. In just over six months I had gone from having a positive relationship, a great team of people to work with, two projects I was passionate about and loved working on, a great house and stable financial situation, a happy and healthy family and a social network I loved to... what? Nothing, was how it felt. I looked around and all I saw was rubble. Worse, it didn't feel like anyone could seperate me from the mess I had caused. Worse than that, neither could I.
I loathed myself. I felt lower than I had ever felt before. I knew that every other time I had thought 'it can't get any worse' I had been wrong. This was rock bottom. My psychiatrist, who seems like more of a hippy than I am, summed it up by explaining to me that if we don't listen to our body telling us it isn't coping, it has to send stronger and stronger signals until we stop doing harm. This time, I got the signal.
I accepted the diagnosis and got serious about getting help. Before, I had heard Chronic Fatigue Syndrome and dismissed it with self doubt. I had a friend with CFS. She was in pain all the time, was on a revolving mix of treatments, seemed to know with certainty that was her diagnosis. Sometimes I went weeks with no physical pain. I could make myself work if I really pushed. No doctor had prescribed me anything to solve my CFS. I couldn't shake the idea that really, if I committed myself to, I could get past this. I felt like I was lazy, that I just couldn't cope with pressure. I had forgotten who I used to be. Forgotten what I knew. That as little as a year ago I was damn good at my work. I had showed committment to many projects, had done well as a magazine editor for many years. While I can now look back and see the progression I had gone through to eventuate where I am, at that stage it felt as though I had been a failure forever.
I made myself a promise. No more projects until I had been 'well' for six months. Even that promise was made for other people, though. It wasn't in an effort to actually get well and manage my life, it was with the mindframe that I couldn't do to anyone else what I had done to my team that year. Regardless, I was at least propelled to get help any way I could. I went to my medical appointments, I saw a natropath, I read everything about CFS I could get my hands on.
As I worked myself out of the self-loathing pressure I felt about my work situation, I started to realise how much of general health issues I had been struggling with over the past 6-12 months fitted in with a CFS diagnosis. Not just the fatigue, which was certainly overwhelming, or even the muscle and joint pain, which were also debilitating, but a raft of other, seemingly unrelated issues. The previous December I had been sent to have an operation to check chronic abdominal pain. I had sore sinuses and glands almost permanently. My memory, once so reliable I never doubted it, was hazy about whole weeks or months. Where I had been verbose and articulate, I now struggled to find the correct words for things. I would picture a chair and be unable to recall the word for it, much like my Grandmother who suffered from Altzheimers. My muscles often felt like they were jelly, while my joints would grind so painfully I could hear them move. I became over-sensitive to smoke, could barely stand average noises and couldn't follow conversations of even the most basic kind.
Once I put this altogether, I wondered why I had been fighting a diagnosis that my doctors agreed on and which fitted my situation. I had never, ever considered that what my friend suffered with her CFS was not real, but somehow I couldn't allow myself to admit to having it. I felt embarrassed, as though other people would feel I was somehow faking the fact that I couldn't cope with life. Because that was my secret, inner fear about my own self. That there was nothing wrong with me at all, I just couldn't cope. It was about this time that I withdrew almost completely from everyone bar my closest family and a few friends. It seemed like if I wanted to avoid having to apologise every day for what I couldn't manage; turning up to birthdays, picking up the phone to chat, going to friend's houses after they had come to mine, then I would have to allow myself to widen the gap to self preserve. It has to be said that I was probably also looking for a way not to have to discuss what was 'wrong' anymore. I kept feeling the mass of expectations about when I would get 'better'. I felt pressured to say positive things when asked how I was, rather than admit to the fact that I felt more lost than ever before. The few people who had once been close enough to see had accused me of 'moping' or allowing myself to become 'useless and wallow' in what was happening to me. It made me shut off entirely.
While shutting out everyone else wasn't a positive approach, it did allow me to stop worrying about what other people thought of my diagnosis and start focusing on what it meant to (and for) me. I didn't have expectations from others, so I finally allowed myself the space to get better, rather than willing myself to get on with it. That time was invaluable. As weeks stretched into months, my only task was to get ready for my upcoming wedding. It was a relaxed, informal night so there was little stress (or less than most weddings), which was a blessing. The main struggle at that stage was in maintaining any kind of life outside my couch, and taking care of the best thing that had happened to me in a long time, my puppy. He and I kept each other company every day. When we could, we walked. When we couldn't, we rested. Meanwhile, as the wedding drew closer the cracks that had formed in the high stress situation our illness had placed on our relationship grew almost unbearable for my partner and I. Instead of leading into our wedding in a happy, excited way, we were fighting, blaming and struggling. We were unfair to each other, and it was a horrible time for both of us. I think I will always regret that this time in our life wasn't celebrated and cherished the way it should have been.
Regardless, with wedding over and a honeymoon well enjoyed, we came home to a blank slate. We had moved back in with family as we couldn't afford to live on our own anymore, which was the right step but heartbreaking to leave a home we both loved (another thing my illness had taken away from us) and looked towards the next stage of our lives. Our honeymoon in Vietnam had reminded us how passionate we were about travelling, not being stuck as we had felt for so long in our situation in Melbourne. We decided to take action, and my partner applied for work in another state. With a fast job offer in literally days, we made the sudden move to Perth within a month of returning from our honeymoon.
Heading off in our car to drive the width of Australia, just us and the dog, felt amazing. While I still struggled with my health, it was a decision we had made for ourselves, that hadn't been dictated by what we couldn't do. I felt like it was a chance for me to take time away, stop apologising for not being in people's life (or my own for that matter) in the ways I had before, and for us it was a chance to work at something together. We arrived, we started to make our new life work, and just as things felt like they were becoming positive, we hit another hurdle. My energy had taken a boost, my sleeping patterns were great, my pain was manageable. Our new house was fantastic, my partner's job was brilliant, our housemate was a joy. Then we were told the dog had to go.
Where pieces had been fitting together, now they started to come apart. I couldn't just ship the dog off home. For a start, who was that fair to? He had become conditioned to the daily company we provided for each other, and sending him home to live with my parents meant long days on his own, with owners already too overworked to take care of themselves when they came home from long work days, let alone walk an energetic puppy. Besides that, having him had been the best therapy for me, above and beyond anything else by miles. His needs set a routine for me; when he got up in the mornings, I had to let him out to go to the toilet, I needed to feed him when required, excersize him regularly, play with him and nap with him. He was my catalyst for getting out of bed, and his company stopped me from feeling completely bored and lonely. I had purpose as his caregiver. What would happen if I didn't have that anymore? Contemplating, but mostly stressing, over what we had to do bought on a rough patch for me, which made it even harder to accept he had to go home.
Finally, a decision was reached. The right thing for me to do was take him back to Melbourne, at least until another solution could be found. I could settle him into my parents house and work on finding the money for myself and my partner to find another place to live. As soon as we could do that, I would be able to bring the dog back and we would be able to get on with our 'fresh start'. While it was right for him, and right for my responsibilities to my family, it wasn't very good for me. It meant I didn't have the fresh start I needed so badly, and I didn't have my partner with me. We were conducting a relationship accross the width of a continent. It also meant living out of a suitcase and frequent plane travel when I wasn't always capeable of driving, much less multi-state movement. Just when things had felt manageable, here they were becoming complicated again. Then I realised TINA was on, and it struck home just how long ago that felt.
The last 12 months I don't think I've gotten better. If I had realised this would be the case way back then, I don't think I would have had the strength to keep getting up and facing everything that would keep coming at me. I do realise that I needed this to all get so bad and out of control and horrible and messy. My nature would never have let me just slow down and stop striving for what I wanted to achieve next. The gift of this year has been learning to reasses what's important to me. Right now, I want to spend what little energy I have on my family, and on the people who have supported me without question or judgement. I want to get my marriage to the most positive place possible, and enjoy every second I get with my puppy before he grows up altogether. Probably more importantly, the gift has been learning that I valued my worth far too heavily by my career success or failure. I'm not only as good as my last project. At age 27 I've achieved more than some people manage to ever do. I've had goals, I've reached them, I've surpassed them. I've worked with amazing people, created brilliant projects, found what makes me tick. I deserve to measure my worth by more than my failures. I've worked bloody hard and that doesn't go away just because I also fell down.
I don't think I'm even halfway to learning how to manage my CFS. I still push myself when I know I need rest, or fail to make healthy choices. I've taken a break from doctors until my the start of next year, unless I need them for something urgent. I'm trying to manage to live more in the world, rather than opting out. Some days I don't want to accept where I am. While it may seem like a holiday to not have a job, it doesn't feel like a holiday to try to pay off all the debt you accumulate when you don't have employment. Or to lie in pain, trying to get through the day. It's certainly not fun to struggle to remember if you ate yet, or to sleep through almost an entire week of your life, to realise that taking care of your basic needs is something your partner doesn't have a choice about (and neither do you), to feel isolated from your friends as their lives go on or to answer often thoughtless questions about why you aren't better, aren't contributing, aren't working, aren't 'over it'.
What is clear as I look back over the past year is that while I might not be 'better', I'm doing better. Not because I'm less or more well, but because I have accepted the situation I'm in and I'm not looking for a quick fix anymore. I don't think about when I'm back to normal, I just try to get as much as I can out of my life the way that I am right now. I still feel sometimes as if I'm missing out on a life I want to be living. Being sick hasn't taken away my goals, my interests, my desire to be living any aspects of my life. It has stopped me from doing things I want to, and I'm always measuring where I would be (or want to be) if all this hadn't happened. But the point is, as much as I can miss the life I feel like I would have had, I just have to work for it more slowly than I did before. It used to feel like it was having that life vs. having my health, now I understand that I can be healthy and set more realistic goals.
So here I am. A year on. Accepting the failures, then dismissing the hold they used to have over me. Not better, just doing better. Putting back the pieces in a way that works. I can be sad that my life isn't what I want it to be, but I can get over that, too. It's a common phenomenon according to all my CFS books, and that's actually given me a lot of relief. At first I felt like maybe I was just "not coping", but it seems this is just another stage I need to go through.
I just have to keep going, keep going, keep going. If I let myself stop and think about these past 12 months too much I might never get up again.
