|Posted on 6 January, 2017 at 18:25||comments (0)|
I have not written a blog recently, and this one will be unusually short. Truth is, after a decade fighting illness I have finally lost my fight, my energy and my hope that I will have my "better day". It is a bitter pill to swallow, acceptance, and not a very cheery or inspirational one either!
This year since the ball in 2016 I have been more unwell than I have ever been in the past, I have struggled and reached new depths that I never thought I would have to overcome. However. I am probably either stupid or stubborn but there is NO WAY Endometriosis is going to stop me from driving the great big bus , namely The Primrose Ball.
This years theme, suggested by the new mummy Rosalind, is a Masquerade Ball. I love the idea of wearing masks as the symbology is quite apt, living with chronic illness and pain can often mean we wear a mask everyday pretending to be well, happy, coping and unaffected by the illness within.
So lets celebrate our masks, and take them off too, because what's underneath is both beautiful and brave.
I am looking forward to an amazing evening, and sharing it with some amazing people.
|Posted on 18 September, 2015 at 17:20||comments (0)|
On the evening of Saturday the 7th Match 2015 we held the very first ever Primrose Ball for Endometriosis Awareness, to celebrate both Endometriosis Awareness Week and also International Women's Day with all money raised to benefit Endometriosis UK.
If our event had an Aura, it would emanate a bright yellow glow like the sunshine of a brand new day and a glittery haze only felt in the most hopeful of dreams; that is how beautiful our evening was.
We had sold out a few weeks before the big day, and we knew that our guests would be a mix of Endometriosis patients, friends, families, medical practitioners and therapists , with a representative of Endometriosis UK too... bringing everyone together who understands and supports women with Endometriosis. United under one roof for an event like never before!
Drinks were served in the foyer and guests were personally shown towards suitable seating, upon themed tables full of goody bags and surprises! Our tables represented 'Self-Management' and each table was themed on (Nutrition) 'Eat me', 'Exercise Me', 'Sleep Me', 'De-Stress Me', 'Heat Me', 'Aromatherapy Me', 'Love Me', 'Meditate Me', 'Tea Me' and 'Beautiful Me'.
It was a very special moment, looking across the room and seeing so many people dressed in evening wear, making such a fine effort for our event, so much glitter and sparkles that a magpie would have died and gone to heaven!
"It gives me great pleasure to welcome you all to The Endometriosis Primrose Ball 2015" are words I will never forget saying, filled with pride and expectation, the culmination of months of detailed planning and the moment when a dream became a reality.
Guests were instantly dropped into our Endometriosis themed extravaganza by the means of a Myth-busting Quiz. Each table formed two teams, answering 10 questions about Endometriosis such as "pregnancy will cure" or "can men have Endometriosis?" ... these true or false questions gave us a useful insight into the general understanding of Endometriosis , and ultimately gave the winning table (only 1 table scored a full house) a giant chocolate tree to munch upon all evening.
The prizes did not end there ! to get everyone in the spirit we had secretly hidden a 'winning' envelope under each table , the person sat next to the envelope won a prize! It was wonderful to see people raising there hands and clapping with joy at being the lucky winner and they were invited up to receive their specially themed prize! (which included Beauty Vouchers, Yoga Vouchers, Carolyn Lovett Book and much much more)
Then it was time for our starter which was a simple and tasty tomato soup, full of flavour rather like our event I hope! and settled us all ready for our first speaker of the evening Mr Anthony Rutherford.
Mr Rutherford, a leading Endometriosis and Fertility specialist based here in Leeds, shared his words about Endometriosis. The room fell silent as Mr Rutherford talked about the effects of Endometriosis on sufferers and their families, how in his experience Endometriosis can be so very difficult to manage without some invasive treatment (be it hormonal or surgical) and that ultimately a surgical approach may be the only realistic, long-term, solution for a better quality of life; free from pain (or more in control).
I personally felt privileged and grateful to have the support of Mr Rutherford at our event, it was so very important to bring every aspect of Endometriosis care and management under one roof ; to educate and increase understanding from a variety of viewpoints and perspectives.
With a large round of applause for Mr Rutherford we then sat down to enjoy our main meal which was beautifully prepared (Chicken with thyme potatoes or Mushroom Risotto) by the Leeds Park Plaza; although without time to spare we took opportunity to begin selling our Primrose Prise draw Tickets ... and how they sold!
Once everyone had eaten it was time to introduce our second guest speaker, Claire Robson, one of our Support Group Members and an active part of the sub-culture of on-line Endometriosis support groups (within Facebook for example).
Claire gave a touchingly honest and at times emotional speech, sharing her Endometriosis story with its highs and lows, allowing us to gain an insight into the often heartbreaking story of symptoms, diagnosis, treatments and surgeries... the realities of being an Endometriosis patient.
After this event, many guests approached me and told me how emotional they had found Claire's speech, that somehow her honesty had mirrored their own journey and it had enabled them to acknowledge their own thoughts; and also allowed their partners to hear words that they have longed to say themselves because they have found it hard.
Following on from Claire we had our third and final guest speaker, Alice Smith, the young (Ambassador and) Trustee from Endometriosis UK. Full of life and vibrancy, Alice gave an animated speech talking of her own battles from a very young age with Endometriosis.
Alice not only embodies the notion that Endometriosis effects young women and girls too, but she also advocates for awareness of this. This is something The Primrose Ball has recognised within its own manifesto of change, and seeing Alice talk so openly about her own experiences was indeed an education because its very unusual to see a young woman talk so openly about Endometriosis and with the aim to educate and empower others. Endometriosis UK provide support for women and their families and they continually strive to raise awareness and change things, for women with Endometriosis, for the better. They advocate us in a very big fish pond and I was absolutely thrilled that Alice could come join us at our event as they are a critical link in our chain.
Alice also took a moment to present me with a beautiful basket of flowers, as you can see I was taken by surprise and overwhelmed by this gesture,
With a very large round of applause that was the end of our Guest speeches and time to promote our text donating ! This enabled anyone with a phone to make a donation towards our event, which will all add to our total! We can confirm that text donations came to £206 and will be gifted directly to Endometriosis UK through Just Giving.
During our desert (which was THE BEST EVER chocolate brownie) we had a very generous anonymous donation of £1000; this was a real highlight of the evening for us as this donation not only secures any future events but also will enable us to take some of our practical idea's and turn them into realities that will support women with Endometriosis in the north, young and old.
Next it was time for our very special Primrose Awards 2015. We had many nominations in several categories and with careful consideration we were thrilled to announce the following winners.
Each winner was selected from a large list of nominations, and represent what it is to care and show understanding and ultimately make a real difference to lives of women with Endometriosis.
• Complementary Therapist - Mike Duffield (not present but a thank you was read out on his behalf) Mike Duffield was nominated for his particular support of one of our group members and Mike was thrilled to receive this award.
• Family Member - Donna Thompson won this award for just being there, in every way for her sister, and providing care and understanding throughout. Well done Donna.
Donna proudly displaying her award at her table
• Friend - Mel Flyn (not present but was collected on her behalf) This award was given because of friendship, of being there and making a real difference to somebody else because of it.
• Medical Practitioner - Mr Trehan gave a very honest and emotional speech, highlighting how much this award meant to him but also how personally he takes every case of Endometriosis. I found, once again, there was a silence that fell in the room when Mr Trehan compared Endometriosis to a Cancer, that although Cancer kills and Endometriosis does not, Endometriosis does take your spirit and your soul. Hearing somebody, like Mr Trehan, talk at our event is a privilege and an honour and we are thrilled to present Mr Trehan with his award.
• Advocate of the Year Award - Mr Rutherford was awarded our final award because of his commitment to care and level of understanding he has shown his patients; and the Endometriosis community, We were thrilled to have Mr Rutherford to come and speak for us and even more thrilled to hand him his Advocate of the Year Award 2015.
Now, there was actually another award which was a total surprise to me! As a support group leader (I have been for some years) I am touched beyond words to accept a Primrose Lifetime Achievement Award. I certainly did not expect to be ambushed with a gorgeous bouquet but I think the words that were spoken and genuine intention of the gesture makes it impossible to not feel thrilled that somebody would feel like I deserved such an award. Thank you to everyone involved with this, its lovely to be appreciated.
It was then onto our Primrose Prize Draw, we had some amazing prizes all donated by some amazing people. We had some TalkTalk X-Factor Live Tickets, Super-Dry Designer Jacket, Jewellery, Art Work, Vouchers and much much more. It was very exciting handing out the prizes and congratulating all our winners, such a fantastic atmosphere !
We were also peddling our wares during the evening ! Our Primrose Ball Hooded Sweater was available to buy on the evening (and beyond) and we also had 1 up for grabs in the Raffle! Love and soft and I'm cherishing mine!
Our last event of the evening was the Primbola, with lots (about 170) items up for grabs we made sure everyone had a chance to win something ! Our event was about giving and I truly hope everyone felt like they were being spoiled! Staying true to form, I bought 10 tickets and won 2 of my own items back!
We ended the evening with a good dance. and it was fantastic to sit back and enjoy watching everyone have such good fun. Even our mascot 'Prim Bear' took the opportunity to sit back (in my shoes) and take in the atmosphere!
Endometriosis is a disease that can slowly take away your quality of life, your joy, and to see all our guests full of smiles was truly a powerful vision.
Women with Endometriosis standing together in solidarity at the Primrose Ball 2015
The Primrose Ball raised, in total, £2810.
This money will benefit so many women with Endometriosis , both nationally and here in the North, I am very proud to have raised so much money but ultimately success is in the awareness and understanding that we shared which is priceless.
So here's to the 2016 Primrose Ball !
See you there !