The Endometriosis Primrose Ball 2015

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'.

                                          Our tables filled with goody bags and surprises

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)

                                          Alison receiving her prize from Rosalind

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 making his speech about Endometriosis

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 Robson, our second guest speaker

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 Smith, our final guest, addressing the audience

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,

                                                       Michelle being surprised!

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.

                                     Our Just Giving page is active until December 2015

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.

                                          Mr Trehan accepting his Primrose 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.

                                          Mr Rutherford accepting his Primrose Award

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.

                                          Julie and Rosalind presenting Michelle with her Primrose Award

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 !

                                          Michelle presenting Emily with her TalkTalk X-Factor Tickets

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!

                                          The Primrose Ball Hooded Sweater is available!

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!

                                          So many prizes!

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!

                                         Prim Bear having a rest!


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 !

Fatigue - So tired it hurts

Fatigue is by definition a word to describe extreme tiredness or weakness through exertion or continued stress, which pretty much sums up one of the main symptoms of Endometriosis.

Tired of being tired? I know I am.

But its not just feeling tired, we are not simply a little bit sleepy, so as far as I am concerned the word 'tired' is far off the mark when it comes to describing that feeling when your whole body is in a total state of exhausted disarray.

So tired it hurts , not even sure where it hurts unless 'everywhere' is a place... and although sleepy (a side effect of some pain medications too) its not always easy to actually fall asleep no matter how much you would like to.

Fatigue is waking up and feeling like a herd of Buffalo used your bed like a dance floor, often there is nothing refreshing about 8 hours sleep , just literally a rude awakening. Somehow the blackness of a dreamless sleep is the only escape our conscience mind can find because once awake its the same old feelings of pain and fatigue.

Or maybe, its waking up feeling energised but as the day unfolds you feel like your being weighed down by a an enormous blanket, each step feeling heavier and more exhausting than the next.

Sometimes this symptom is most prominent just before, during or just after menstruation however fatigue can be a constant , day in and day out. Unmanageable and invisible.

Many women talk about having the occasional diamond day, where for no known reason pain and fatigue have taken a trip to the shops and their absence is deafening. Energy and optimism fills your body and your mind and you do do do; making hay while the sun shines. This is what is called a 'boom' of energy, and activity, that reminds you of what you used to feel like and what you wish you felt like again. However, with every 'boom' there is a 'bust' and over the following days the fatigue can come back harder and stronger like a jealous partner, furious at your momentary liberty and fighting to regain control.

The problem is not only the physical and emotional distress fatigue causes but also the lack of awareness surrounding fatigue as a symptom of Endometriosis and a total lack of support from a diagnostic and treatment perspective.

I can say this with confidence, based not only on my own intrepid experiences but also from the numerous encounters with women who have no idea that their Endometriosis is somehow linked with them feeling like their very life-force is being drained away.

Fighting illness, surgery (anaesthetic) , healing and medication including hormone manipulating treatments can put an enormous strain on the bodies resources, leading to fatigue.

Life does not slow down for those that fall ill and trying to keep up can exasperate pain and fatigue, pushing ourselves past our natural limits; mostly because we don't know where our new 'Endometriosis' natural limits are.

So what can we do? how can we manage fatigue medically or otherwise?

Firstly its important to let your GP know about fatigue, as there can be several other underlying health conditions which could cause this symptom, we often forget to consider that there could be more than one culprit post-diagnosis and linking in with medical practitioners will build a history and allow for further explorations. It could be worth discussing secondary conditions such as CFS/ME and Fibromyalgia which in my experience often follow on from long-term chronic pain conditions, especially those in women aged 30+.

Its important to look at lifestyle and consider both mental and physical changes, as our bodies may need a more sympathetic and endo-friendly approach.

Pacing ourselves, thinking about limits and not over-doing things especially during times where symptoms are worse will give your body the best chance of avoiding big flare ups.

Ensuring hydration, optimum nutrition and gentle regular exercise are fatigue-fighting actions, not cures necessarily, but certainly good practice choices to shelter ourselves from the oncoming storm.

Acceptance is key, taking time to acknowledge the now, to not take blame ourselves for how we feel but instead listening to what our bodies are saying and live a more mindful life.  This is a process, not something you can do over night, but a journey that can be painful as you let go of some things you really don't want to and accept the 'new' way of living.

I think of it a bit like a filter, the 'Endo-filter', which I now remind myself to apply to my plans.. things may seem achievable and realistic on paper but when that filter is applied I can often see that I'm doing too much and have given myself little chance at managing my symptoms. I might say yes but my filter says no no NO!

Fatigue is real, its debilitating and it can take the sparkle away from the shiniest of diamond days and it is my belief that a more proactive approach needs to be taken upon diagnosis by asking the question  "and do you suffer from fatigue?" 

This is why support groups are so valuable because without meeting others you often do not realise that the way you feel is not uncommon for women with Endometriosis. Many women have arrived at meetings totally unaware that there was a 'name' for how they felt and that it was a key symptom of Endometriosis, they left the meetings feeling like their world made more sense and ultimately more bearable.

Stealing a quote used recently by a renowned Endometriosis Specialist, "Endometriosis may not kill you, but it can destroy your soul" Powerful words that many will unfortunately relate to.

Thank you for reading my Endometriosis Blog, here is a poem to leave you with called 'Dear Body' that I wrote only a few weeks ago when I woke up one morning and felt overwhelmed by the pain and aching of my body.

Michelle

Dear Body

Why do you turn against me?

Was it something I said?

You betray me when I need you,

people thinking it’s all in my head.

I don’t want to keep on fighting you,

I remember a time when we were free,

but it seems the more I try to,

the less there is left of me.

Please body can we try resolve this,

Can’t you ease a little pain?

Can we get back to the beginning?

Or will things never be the same?

You know I've tried everything,

But it makes no difference to our ends,

All I want is us to be in harmony,

Though I fear your will, it never bends.

Dear Body,

It must be something I failed to do?

I have carried the blame for far too long,

Or a curse handed down from distant hand,

Or a past life that went terribly wrong!

My mind can’t make any sense of why,

I am in pain every single day,

Why my strength is leaving my once supple hands,

I never wanted things to be this way.

So body, please just talk to me,

tell me what I can do,

white flag is raised high into the air,

I surrender in my war with you.

Michelle Middleton

Endometriosis Support Group Leader

www.endometriosissupportgroup.co.uk