Saturday, February 27, 2010

Unguarded Moments

Men's prison has a smell that is indefinable. Layers of life's smells intermingled with the bubblegum fragrance of institutional floor cleaner. Every sense is assaulted. The damp, darkness of an old Victorian wing blends with the moist heat of the radiators. From the ground floor you can see the 2 floors above through a mesh of iron mesh floors and stairs. Wearing a skirt was never an option.

Heavy doors clang loudly and your keys and chain jingle in time to your walk. I don't remember the first time I met Tony*. I do remember it was early on in my time in HMP Chelmsford. I was there as a drugs worker. I didn't really know what I was doing, but carried myself in a way to assure others that I did.  Just days before I met Tony I remember praying, thinking - how on earth can I help these broken, hardened men. I remember the reply clearly....just listen.

In the early days I was still able to use the 'listeners' cell on the wing. Tony came to see me. A big bear of a man with prematurely white hair and pale blue eyes. His hands were large, and as I looked at them I tried to block out the thoughts of why he was inside. I was not there to judge him, that had already been done. I was there to assess and counsel. I decided not to say much at all, just to listen, and over the weeks I visited with him, he began to share and cry. He poured out the darkness in his soul, some sessions he said little, he just wept.

Saturday, February 20, 2010

Living with ME/CFS, Fibromyalgia and the Marshall Protocol

I can't believe how fortunate I am! Coming back from the UK, I had no idea what to expect. I hoped that getting sun, fresh air and swimming would  help. I expected that living in a kinder environment would also have its positives. I knew I had Fibromyalgia (FM) as I had been diagnosed with it a few years ago in the UK. Unfortunately they didn't have much to offer me there in the way of treatment and I was told just to go away and live with it. That isn't my way though, I didn't believe I should have to continue to live with it. I wanted answers.

There were good days. Sometimes there were good months. I could keep on going for a bit, then I'd do something - like come home for a holiday - then spend months trying to recover. When I had energy I would throw myself into lots of things - out of the sheer pleasure of having energy to do so - then paying for it a month or two down the track. Being diagnosed and treated as hypothyroid also helped for a while.

It's not just feeling tired, it's waking up feeling like you had run a marathon in your sleep, your legs become so weak you can barely stand, and just the effort of taking a shower sends you back to bed. The tiredness creeps into your bones. The world seems wonky. Your brain is cotton wool. Thoughts  disappear into blankness, you can't remember what you were planning to do a few minutes ago. You feel nauseous all the time and your stomach is just not happy. Sleep is unrefreshing and when you have to work you become anxious about being able to make it through the day as you'd only had a couple of hours sleep the night before. Everything seems too loud and too bright. You can't bear the stimulation. Your personality changes as a result. You do think 'maybe I'm just mad'. Your life shuts down as you just do what you can cope with - not what you really want to - not what inspires you. You feel misjudged and start to wonder if there is something so wrong with you psychologically to let this keep happening. I spent a year in therapy, just to make sure, and couldn't have had too much wrong as I am sure my counsellor looked like she wanted to fall asleep half the time!

Wednesday, February 17, 2010

Embracing Change

Change is inevitable, it happens to all of us, yet it something that evokes mixed reactions in many people. Despite its inevitability it still can come at us like a bat out of hell and disrupt the routine of life. Someone dies, someone announces their engagement, someone breaks up with their partner, someone leaves or returns, someone quits their job which was destroying their soul, someone who is usually so accommodating learns how to say 'no'.

We fight, we deny, we laugh it off, we demand and spit the dummy. Sometimes we say 'come and get me', or we are thrilled and energised by it. The adrenaline gives us a hit and we are motivated and inspired or we reach for a distraction.

I think about change a lot. How to do it, why bother with it, why not - what have I got to lose, what do I want to do, create, become, how can I harness it instead of let it overwhelm me. I am glad I have thought about it a lot so that when my GP decided to start me on this bizarre protocol I was up for it. This is enforced change, and I could spit the dummy, or I can embrace it and use it to make something beautiful.

Many times in my life I have embraced change as a catalyst and thrown myself headlong into it. At times I didn't know if I was extremely brave and adventurous or just plain desperate.

My brother Julian died in 1995, not long before I turned 30. It was a life changing event, not only because I lost someone I really loved and who was one of those people I felt understood me, but also because it made me consider my own immortality and how desperate I was for change in my life. I couldn't go on living the way I was. I wasn't living I was just waiting to not live anymore.

At the time I knew I had to do something to break free. I could feel myself sinking further into a dark place and the usual things I used to distract myself from this darkness were only pulling me down further.

Monday, February 15, 2010

A day in the life

It's got to be 35 degrees in my room, the windows are blackened out with heavy coverings and apart from a slight light seepage from the side of the dark coverings, the only other light comes from my laptop and low watt lamp (and it still needs to be lower).

I am sitting on my bed writing on my laptop, I have to venture out to the freezer every half hour to exchange ice packs as the fan doesn't quite cut it at keeping me cool. It's hot.

I spend most my days in the dark, reading, writing, surfing the net and emailing, just holding out for dusk so I can enjoy a swim and watch flocks of rainbow lorikeets frolic cheekily from tree to tree squawking furiously about their day. I just float enjoying the weightlessness on my aching body, the coolness of the salt water in the pool, and do a few stretches. It's my favourite part of the day.

When I have to go out during the day, I have to be completely covered up - avoid as much sunlight as possible. Oh and did I mention I live on the Sunshine Coast? It's no mean feat believe me. Someone suggested I wear a burqa - it may be a practical alternative but it's against my religion.

If I don't cover up and avoid all sunshine, I suffer with neurological symptoms and extreme fatigue later on as my vitamin d levels (the hormonal part) increase and throw me into a hormonal mess. So, I mostly only go out at night (my flatmate endearingly calls me a vampire).  It is the time I function better and I am trying to come to terms with having to wear dark glasses even when I go out at night! How do you do this when eye contact is an important part of communication? I will figure a way, I guess blind people do it all the time. The good thing is I can check someone out blatantly and they would never know. I have had some funny looks from people - perhaps they think I am someone they should know in disguise?

I need to wear glasses designed to block out light for people with low vision - no I don't have low vision - but I have become extremely photosensitive, so I can see perfectly well outdoors with glasses designed to provide only 2% light. It adds to my already super sensitive hearing powers. Superpowers?? No not really, apparently it's all part of the healing process. My 'indoor' glasses allow 10% of light and on a bad day (night) I can't watch tele without them on.

I eat veggies, veggies - oh and did I mention vegies??? (Note to self: learn to make different dishes with veggies - it's getting a bit stale). Oh and a few rice cakes, hummus and I have to admit the occasional treat (usually an ice cream or 1/2 a chocolate bar). I figure allowing myself a treat once a week allows me to forget about it the rest of the week. This method has worked well for me in the past, otherwise I know I would pack it in too soon. And it's gotta be a long term thing.

So how does anyone get to a place so desperate where they are prepared to restrict their lifestyle to such an extreme? How did I get here? Well it's been a long journey. Over the next few blogs I will endeavour to unravel it and hopefully help myself to make sense of my life, this illness, my choices, and maybe even bring some solace or inspiration to someone else along the way.

This situation has stripped away much of what would be seen to make up 'my life' (my career, my boyfriend, my photography, my energy and vitality, social networks, dancing etc) but it has left me with the gift of time and contemplation to find out more about myself without the trappings of labels and expectations. It's back to basics. Despite the obvious frustrations, I have a sense of anticipation to see what emerges in my life, and invite you along for the ride.