Wednesday, December 1, 2010

The Wonder of You

Have you ever noticed the way a child will become engrossed with something small...a rock, a snail, a leaf? Time can dissolve for them as they play and wonder about their world.

One of my favourite songs is Louis Armstrong's 'What a Wonderful World', and there have been many times in the last 7 years where I have felt deeply aware of the incongruity of loving that song and my lack of joy and wonder of the world around me.

This year I have rediscovered the power of a sense of wonder and it has taken me deeper than being a child studying a pebble. I have wondered about many things and that has had a powerful transformation in every area of my life:

Observation: My body refuses to go on the way it was....
Wonder: I wonder what happens if I sit with this and allow this process to take place? I wonder what my body is trying to tell me? I wonder what will happen if I listen to it?

Observation: My friend doesn't seem to listen to me...

Thursday, November 25, 2010

November Song

In a few moments this afternoon I had a revelation that astounded me and was confirmed again by a friends blog post this evening. I woke up after an afternoon nap...I knew I had been feeling unusually rough this month. I am really struggling at present. I sat on my couch and an overwhelming sense of dread came over I relapsing badly again? Has all the good progress I've made this year just been a tease? 

I thought back to when this slide was in November....funny I thought....I crashed big time last November - worse than this I sat and contemplated flashes of things that had happened lately came to mind....the stories I had written reminiscing about my mum at my writing group....buying little things that reminded me of her,  and a story I wrote this week about a dream which a friend of mine assures me depicts post natal depression to a tee....(if you are my friend on facebook you can read this in my notes). Funny I thought...I haven't had a child to experience post natal depression....but on some level I understood it....

My GP also looked at me yesterday with such sorrow and compassion and said that it was so sad that I had missed out on relationships and having a family and his empathy touched me to the core. So I realised that I was in some way being directed to some grief that was still manifesting in my life.....and began to ponder deeply.....

Monday, November 22, 2010

How to be Well....despite feeling Crap!

When I think back over this last year...I can't help but be amazed. Earlier this year I was hanging on by a thread - see April's  'Path of Least Resistance' - I was the sickest I had been over a consistent period and facing homelessness again.

It has been an incredible that I don't want to repeat but one that has also brought such a deep, resounding sense of Joy and Peace to my life. Reading over my year of blog posts I have a grateful respect for the journey I have been on and realise that I have learned to be well - despite feeling crap.

What is being Well? To me it's Acceptance and Surrender - not resignation - but accepting exactly how things are - acknowledging your pain, physical, mental and emotional - listening to what it is telling you, but not letting it define you. It's surrendering all your past desires and ambitions and finding what you're left with is who you truly are and what you truly want to do.....It's grieving fully for those losses and through that process making space for what your true self wants.

It's Compassion.....I spent years giving selflessly to those in need, but I realise now I missed an important ingredient to the miracle of Compassion - having compassion for myself. This illness has taught me the power of that. Part of learning Acceptance was learning Compassion for is hard to lack compassion for others when you embrace and have compassion for your weakest moments. Charity begins at home....I always thought that meant your friends and family...but now I realise it begins even before them - being kind to yourself.

Wednesday, October 27, 2010

The Highly Sensitive Person

I used to think that when I was called 'too sensitive' it was an insult. I was thrilled by challenges and a hint of danger. Perhaps, subconsciously I was attracted to doing things that required sensitivity but were also seen as 'tough'  - acting, humanitarian aid, social work etc....

A month back, my GP said to me 'you're too sensitive to be a social worker' and I did take that being highly sensitive was a character flaw.

The day my GP said this to me I went upstairs to my neighbours place to check on everything for her (she was away in the UK for a while). I glanced at her bookshelf and a title leapt out at me.....'The Highly Sensitive Person in Love'

Hmmmm....I thought .....I better check that wasn't so much the 'in love' bit that interested me but the 'Highly Sensitive Person (HSP)' bit....what's all that about???....

Monday, August 16, 2010

The Gift

I am amazed. So truly alive and so truly amazed at life. For the first time I am experiencing consistent joy and wonder as I walk hand in hand with Synchronicity and Serendipity.  Awe whispers in my ears and my heart is full to overflowing.

Out of this time of enforced stillness and reflection, I have found myself face to face with my authentic self....and it's not as scary as I would have imagined previously. I realize now through this journey I have embraced the feminine energy and stopped doing. Instead I have focused on being, feeling, expressing and receiving. Out of that life has begun to flow and flow abundantly.  I awake with such a sense of anticipation and joy despite whatever my physical state is for that day. I can't wipe the smile off my face.

I wonder about being a woman and how, through equality, we have learned to take on the masculine energy and do, achieve, strive, nurture, manage, lead and control.  Don't get me wrong there is nothing wrong in flowing in the masculine energy - we all flow between both and we need to. But when we get stuck in one I wonder how healthy that is for our lives and our relationships. I am glad that women are treated as equals, but I feel that somehow we've equated being equal with being the same. We're not. And I am glad of it. God,  I love being a woman for all our contradictions and emotions, and a man who is at peace in himself is to be respected.

Sunday, June 13, 2010

A Tapestry of Diamonds

It's 1.12 am and I am awake. Nothing unusual in that - comes free of charge as part of the CFS/FM package. Funny, sometimes I am so exhausted I can't do anything - yet sleep still eludes me. My body seriously aches - like I've done a few rounds with Mohammed Ali - and this hard bed is not doing me any favours.  (Note to self - must get  soft mattress soon!). I can't lie on my side as my hip is in so much pain, yet I never learned to sleep on my back. I have a gentle restlessness I can't appease - that feeling I get when I can't do anything to make it go - except write. So here I am.

Despite all that I also have an indescribable sense of peace and the bubblings of a little joy starting to trickle from within. I have been lying here just aware of the peace outside and the stillness. I am aware of the pain, but not consumed by it. I have acknowledged it and accepted it and somehow that has released my thoughts from it. I opened my blind and through the silhouette of trees standing guard around my window I watched the stars - bold and brilliant.

Looking at them reminded me of a time when in the remoteness of the New Mexico wilderness I emerged from an intense session in a sweat lodge and fell back on the chilly desert and stared at the stars. They appeared to drip like liquid diamonds and I lost all sense of where I ended and the universe began.

I used to have such a sense of wonder, believed in things like synchronicity and serendipity. I had a spirit that was aware of the supernatural and would see situations come together in seemingly miraculous ways. I took journeys and saw miracles - I didn't concern myself with what my 5 year plan was - I lived for the journey not the destination, and through that I grew and learned who I was. I met the most amazing people who came into my life and out just as quickly - leaving me with a resonance of some truth or memory that grew into a rich inner tapestry.

Thursday, April 8, 2010

Path of Least Resistance

Path of Least Resistance.

The day I wrote my last blog over 6 weeks ago, I slipped into such a dark place. I was literally in a dark place but I fell figuratively into one as well. I was living in an environment that was not conducive to health. It had become toxic and I was stunned by the transformation. I felt so incredibly alone and vulnerable, and no evidence to the contrary would register. I had made another mistake with who I let into my life. I had no strength left to fight anymore. It felt easier just to slip away.

The mental fog I suffer with CFS/FM confused me so much, at times I could not only not remember what I had done or said but which medication I had taken or which I had not. I feared that in such a dark time, it would be easy to just keep taking more and more medication til I just didn't feel anything anymore. I hung on to loving comments from people on email and facebook and tried to maintain a positive outlook, then the internet was taken away from me.

On the night of my friend Lou's 50th party I seriously wanted to disappear, I joked and smiled but inside I was dying. I wanted to reach out for help but felt so tired I couldn't, and I couldn't bear another rejection. But I didn't need to reach out, Lou had seen where I was at. The next morning she called me and said to come over to her sister's house where she and her husband Paul P were house sitting. When I didn't get there in 15 minutes she called again and I let her know I was on my way. She knew. 

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.