Thursday 23 June 2016

Pole Theatre


Now the glitter has settle, the costume has been placed neatly away until next time, the shimmers and sparkles are back in there box, the fake tan, well that's staying put for the summer but my mind has come back down from cloud 9 I'm ready to write about Pole Theatre.

On the 21st of May my heart raced constantly, my mind whirled, my stomach was doing flips as I was ready to get on stage. In my costume made especially for me sparkling a pair of lungs by Fi Bourke I was there to tell my story, a story you all know well and I have told in many ways before, through word, through documentary, through writing but this time it was a way in which I felt like I was ment to do. I would twist and turn my body around the pole while one republic I lived played. I was there to act, to dance, to feel my story, to lay it bare for everyone to watch while I felt most at home but almost stripped back to my bare sole for everyone to look inside to see, to feel my emotions. 

As I stood there at the edge of the stage trying to compose myself, to catch my breath as the nerves had simply knocked it from me and then Michelle shimmy starts to speak, the toned, tanned, Australia pole goddess was talking to me. I don't know what it is about the Australian pole ladies but they are something simply to be in awe of, I had a similar experience when I met my idiol felix not just any Australian goddess she is the goddess of goddesses. 

Michelle was getting ready to introduce me on stage and she read my bio, it was short and sweet explaining my story, my life with cystic fibrosis and receiving a double lung transplant and chronic rejection I didn't include my second transplant in the bio, my performance would tell that. She exclaimed 'you've had a double lung transplant' I replied with ' 'yes 2 actually' gobsmacked she asked how I was, ah here's the thing, I'm wasn't actually doing so well, a whole month and my lung function has been going down a fair way, I have been up and down to Harefield for tests and medication but there is still no exact diagnosis at the time. Now we all know I'm in Chronic rejection.

How do you explain that to Michelle shimmy, well I don't really know what I said, I think I mumbled and bumbled until my husband and coach Amy told me I was starting to get my self panicked and I needed to calm down. 

Yep I was about to step on stage with my precious lungs that were struggling and ask them to help me fly. I knew the possibilities were stacked against me, I knew that I might step on that stage and have to stop because I couldn't catch my breath, that I would then have to stumble off in complete embarrassment and horror because this stage was for semi pro, lots of people had entered, lots of people hadn't got through. Only 6 were in my category, there were international competitors to. This was big, but if I didn't go out, if I didn't try, this opportunity might never come again and then I would kick myself. 

It was time. I stepped up checked the poles and got to my start position on the floor. My music felt so quiet, I know It was loud but my ears had that bubble feeling, I just couldn't hear it. 

My husband stepped on to the stage with me and we performed our piece together. 

My first combo Felt great, I Beamed in my first splits trick and looked into my audience capturing the judges eyes.

 I removed my hospital gown bejewelled with black lungs and showed my glistening costume under neath. 

Suddenly I felt like all the air in the room was gone, I climbed for the second combo and failed on the invert, my muscle had run out of oxygen and failed. I styled it out and picked up what I could. I took precious moments to gain some oxygen back, to breathe. Had I been to fast and used it all up or were my lungs just not up for it this day. I carried on determined that I must get through. I had to do it. It came to my last combo, I climbed the pole held for my bendy elbow hold and made my way to eagle. 

Sliding down the Pole I made my last connection point with the audience and Stuart scooped me into his arms. We walked to the back of the stage, he asked me if I was ready to take my bow.

 See we choreographed that scoop for one reason because I know I wouldn't be able to stand any longer. I whispered no I'm not ready, as I clung trying to breathe, he said I had to be put down now. We turned and made our bow. I walked off and made my way to the floor where Sam my friend and fellow perform placed my head on something softer, Stuart hoovered and Amy held my hand. Stuart undid my costume as it was now to tight to breathe with my struggling lungs. I don't know how long I stayed on the floor, it felt like a long time. 

At first I felt disappointed I wanted it to be perfect but then when I saw my video back suddenly I felt nothing but pride. It might not have been my best ever but god damn it I did it and If I could, I would do it again and again. I would choose to do it perfect but if not I would do this exact performance again and again.

Here's the link for you to all watch

Next thing I knew I was front page of the express and echo they had shared my video and over the 2 videos i accumulated 15k views. 

So now I sit here reminiscing of my competition, I didn't win the competition but for me a personal victory took place, I did have another competition in a few weeks but my radiation has been bought forward and I start today. In my mind I wanted to believe that I could do the competition, but my lungs are very much up and down and all over the place. With the radiation starting today by the date of the comp I should be neutropenic which means no immune system and barrier nursed.

Part of me wanted to do this comp because I don't know if I'll ever be able to do one again. Radiation will hopefully stabilise me but I won't gain back what Iv lost because chronic rejection scars the lungs. It also causes air trapping which I'm really feeling. Im determined to stabilise then build strength in my lungs to hopefully enable me to do so. It won't be easy but nothing worth doing ever was. At the moment I'm keeping active as possible and teaching when I can. I have to keep using my lungs so that they don't decline in fitness Aswell as lung function. It's the only way I know how to do this.

Friday 17 June 2016

Chronic rejection- the fight is on.

So I promised more posts about training as a spoonie and I promise there will indeed be! In fact there is a mass of scribbles that currently need to be deciphered so you can all understand my jibber jabber. But I have a couple of personal blog to write...

One about my amazing experience at Pole theatre Uk and the other which I wanted to share with you all today.

For those of you who follow me on social media sites you will already know. Here it is for those who don't along with some more thoughts and feelings.

See my lung function has been dropping over the last 2 months, it is down by more then a litre. Sounds a lot, that's because it is. Iv been back and forth to the hospital where I am currently. Iv had several bronchs and finally Wednesday came. Crunch day. I knew they had to tell me what was wrong then and there it was. I'm starting radiation therapy. I asked if there was diagnosis with this. O.B otherwise Chronic Rejection.

I held myself together and said ok, thinking of everything that had happened before but also calmly reminding myself that not all chronic is the same and that actually although I had had a large drop in lung function it was not as much or as quick.  My lungs were at the best possible lung function they could be before this, so my lung function is still relatively high, that means we have one thing we didn't have before. Time. 

I am strong mentally and physically and in a very pragmatic place. I'm looking at all the research, planning how to manage my business and finance. My biggest worry was telling everyone. Telling my husband, my nan, my sibling and friends. Mostly I felt sorry, sorry they would have to hear this scary news and face this battle again. I hate them being upset and it's what hurt the most. I tried to tell them in the least injuring way possible, reminding them that this is a different situation and that I'm going to beat this but I knew once the words chronic rejection their brains would go fuzzy and anything else I said would be like a distant echo. 

So I'm to start radiation therapy as soon as possible, today I go home while I wait for my appointments. For me obviously I'd rather start immediately but that's not possible so I'm going to use this time at home to get organised for when I come back up. Try to see all my friends who are now fearful that they might not see me again and remind them they aren't getting rid of me that easily!!!

So Iv always wanted to raise more money for Harefiekd hospital with all they've done for me and I decided that I might Aswell crack on with this so I created a virgin money giving site. This is for all my friends family who wish to do fundraisers to put all the money in one place and for those who have asked if they can donate money to show support can now do so. I appreciate everyone's ongoing support, if anyone would like to raise money for Harefield then please feel free to email me

Here's some pictures from my stay, trips out with friends and time with my hubby as we celebrated 5years of marriage yesterday.