Wednesday, 19 September 2012

Gullible & vulnerable or just being me?

Gullible - when you are easily fooled
Vulnerable - capable of being hurt physically or emotionally
Just being me - topics from this weeks meeting ..

On Monday this week I held my monthly fibromyalgia support meeting at my home. The day started off pretty much as always , awaiting my carer to help me into the shower. I popped my lansoprazole for my ongoing heartburn a side effect from taking so much mediction the last 8 years . I drank my fiber and took my bisocodyl in the hopes that I might not have to resort to another dose of picolax just to pass a bowel movement . I took a good long look in the mirror and decided today I would save some energy and let my hair dry naturally as a lot of it has fallen out now on my new medication and chose to not wear make up as today I do not need a face on - I can relax amongst those who understand and be me. I looked in the mirror and smiled - 'I am ..well ... me' !

The funny thing is I have been hosting these meeting for a very long time , it always amazes me that each month I feel refreshed and renewed as we meet to catch up on day to day living. We escape our pretending to be normal and get to open up and be honest.  I have always considered myself to be a researcher a seeker of truth and yet I have also been very gullible when it comes to listening to people who I wrongly assume know my body better than I do. This lead to me admitting that when I was unable to leave my mobility scooter I had of course become so desperate for answers that I would have tried anything just to get better. It opened a general discussion and it was interesting to hear how vulnerable we become when we allow ourselves to yearn for what we no longer have.
Mobility scooter mum banned from school run.
 I  did not realise how precious my time swinging with the kids at the park , or swimming or running were until I was physically unable to do more than sit and watch . I became a spectator on life yearning for what I had lost. for awhile consumed with a sense of bereavement I went through anger,guilt and shame at not being useful. This was my perception of what I had become - but it was only my perception as others who know me will tell you I was contributing 100%  but all I saw was failure . I think it is amazing that we are so harsh on ourselves .
 We would never dream of saying to anyone else half of the things we tell ourselves. It is only when I chose to open up to new things that changes began.  So I spent a lot of my time researching and reading. I looked for inspirational stories to lift my spirits and remind myself that everyone everywhere is on their own journey.  Every day was a fight with myself and inner turmoil of emotions and I struggled to keep them under lock and key as I could not allow myself the self pity or face the shame of tears. I was the strong one , the one who was always smiling and busy and active . The mum who had open houses and organised themed balls. I dashed up and down the country helping set up charities and editing newsletters . My life had been full and yet it had been full of fake smiles for both media and TV crew and sadly even my own family.
Support from my fellow spoonies!
 In 2007 I sat in a room of strangers I had just listened to a very touching story and I began to cry , not for me but because I suddenly felt a loss of control of my emotions I had let go. I asked if I could leave the room so as not to disturb her talking and the doctor asked me to stay and asked me ' why do you want to go , what are you feeling?' It was at this time that I wanted to scream out in self defense as if suddenly under attack ' I feel vulnerable and do not want to talk about it as it would not be fair to take up your time when clearly other people need it more - I am tired of being treated like some gullible fool swallpwing your advise to keep my chin up , stay positive you have no idea what I am feeling !'. But all I did was cry . It was a turning point - I suddenly realised I was very capable of listening and helping but not of sharing my story and that for as long as I could remember I had indeed not allowed myself to let go.

With thanks to Alexa Wright for adding to my journey .

My sanskrit tattoo a constant reminder.
These days I express my emotions though poetry,blogging and sharing my time to help others . I am greatful to all of  you who take the time to send me emails and leave me little comments . It reminds me that the best thing I could do for myself was to accept and love myself first . Daftly those of you who have met me will see I have a tattoo on my hand that was once paralysed - it is written in sanskrit - it is a reminder to love yourself before you love another . Loving yourself is about acceptance, taking a good look at your self . Giving yourself permission to let go , have a bad day , have a good laugh , whatever it is that you need . I think we often try too hard ..When is the last time you took a look at yourself in the mirror and said 'I am' and just smiled ?


  1. Thank you so much for sharing straight from your heart x

  2. Thank you so much for sharing straight from your heart x

  3. Thank you so much for sharing straight from your heart x