#Underthehat - Cluster Headache Awareness Day
As a wedding and portrait photographer I pride myself in telling the story of the day. But what if the genuine 'story', is so well hidden, it is barely possible to catch a glimpse of what is really happening. I look at the image below and If I were to describe it in words, I would say 'a black and white image of a doting father giving his daughter's hand in marriage to an equally doting young man'. I am not for one second implying that this is not the real story, I happen to know it is most definitely part of the real story, but there is also a lot going on in this image, which is not visible.
You may not be aware, but 21st March 2016 is Cluster Headache awareness day. I certainly was not aware of cluster headaches until I met Fraser and Chloe back in 2014 before their beautiful wedding at Packington Moor in Lichfield. At that point I knew that Chloe was suffering from some health issues that may pose challenges for her on her wedding day, however I got the impression that this young and beautiful lady was extremely strong willed and determined, and nothing would spoil their wedding day for them.
Knowing what I now know about cluster headaches (through Chloe's education mainly) but also through my own online research that I did to try and understand what challenges my couple might be facing on their day; I know that the sheer fact that they got through the day is nothing short of a miracle and totally inspiring.
I learned that not only is Chloe amazing, the way that she copes with this indescribable pain caused by her chronic illness (her invisible illness) she has amazing support from her husband. Chloe and Fraser are both campaigning tirelessly for awareness of Cluster Headaches and they are trustees of OUCH UK, The only registered charity in the UK for Cluster Headaches.
Their beautiful wedding deserves a blog post all to itself, however in support of raising awareness of Cluster Headaches, I asked Chloe if it was possible to share her story, and how she and Fraser coped with her condition during one of the biggest days of their lives in time for Cluster Headache Awareness Day tomorrow - I personally would like to see #underthehat trending on Twitter!
In Chloe's Own Words
Most brides worry on their wedding day about the weather, if the flowers will arrive on time, and if their dress will fit properly, and while I had those worries too, particularly my dress fitting, I was more concerned with being physically capable of walking down the aisle and not triggering a cluster headache attack during our big day.
Chronic illness and pain has a huge impact on my daily life, and has stopped me living my life as I want. I have to cancel more times that I can remember on friends and family, and I haven’t been able to work consistently for many years. I have a number of chronic health challenges; however Cluster headache is probably the biggest difficulty with my health. When it came to our wedding, I was determined to not let the pain disrupt or ruin our day.
My husband and I visited a number of venues, and one of our priorities was a ‘quiet room’ where we could store my medication and an oxygen cylinder in during the celebrations in case I needed it. We chose Packington Moor as our venue, and we were very thankful for the use of their accommodation for this reason.
On the morning of our wedding, I felt so calm and relaxed. I knew the only thing I needed to really concern myself with was my health. I took extra steroids (for to my adrenal insufficiency) to avoid an adrenal crisis as I knew the day would be both physically and emotionally taxing. I also drank a lot of caffeine as that can sometimes help stave off a cluster attack, and made sure a few different members of family had my medication with them in case I needed it urgently.
My bridesmaids and I had bucks fizz while my make-up artist Charlotte finished our make-up. I only had a few sips then passed it onto my bridesmaid Hannah to finish, as champagne can be a cluster trigger. I asked my nearest and dearest to use minimal perfume and aftershave too, as they too can be a trigger.
I was very shaky while getting dressed, but once I was in the car with my father, I knew I could get through the marriage part of the day. I had no doubts about it! There were a few moments in the church where I experienced ‘shocks’ in my head, but thankfully they didn’t worsen.
I again didn’t drink any wine during our wedding meal, except for the champagne toast, instead opting for a ‘safer’ drink, of rum and coke (I’m lucky to be able to drink some alcohol, as it can be an instant trigger for many with cluster headache).
As the night went on, I began getting shakier and so took more steroids to keep any crisis at bay. I had a few sit-downs with family, but I loved dancing with Fraser and our friends and I wanted to enjoy it as much as possible. I knew I was exhausted and would pay for it the next day, but I didn’t really mind. I was having so much fun celebrating marriage to my wonderful new husband, and I didn’t want the night to end. I think all the love from our friends and family, and of course from Fraser, kept me going!
My husband, Fraser, has always been an incredible support to me- my rock, even when we were just friends, and I’ve always felt I could trust him and that he believed my pain – a huge thing to those with chronic illness. I was just so thankful that I was marrying my best friend, and I could call him my husband!
For more information and to make a donation please visit the OUCH UK website by clicking the banner below.
Thank you to Chloe and Fraser for asking me to capture their beautiful wedding day and for also sharing quite openly their experiences of chronic illness.