Sarah's story - Volunteers' week
A pea sized problem...volunteering
When discharged from hospital I had no idea that The Pituitary Foundation existed. I was in a bubble of bewilderment. Ecstatic to be going home after almost a month in hospital. Nervous not to have medical professionals around me but looking forward to my own bed. In the following weeks and months there was a lot of rebuilding of my physical and emotional health to do and I hadn’t realised the enormity of it.
Finding The Foundation
One day it all completely overwhelmed me and I used the details my Mum had found online for The Pituitary Foundation. I poured my heart out crying whilst I wrote in a desperate attempt not to feel so isolated and alone. Swiftly a reply came back from Pat McBride offering me real compassion, advice and reassurance. From that day on The Pituitary Foundation has played a big part in helping me to feel less isolated with what is a rare, complex and confusing disease. The Nurse Helpline literally saved me from what I now know to be an Addison Crisis. The endocrine nurse talked my sister through the emergency steps to help me.
The conferences arm me with knowledge and I love reading The Pituitary News, hearing other people’s stories, coping methods alongside news and events.
I knew that as soon as I was more stable I would help repay the debt I felt I owed to this small but powerful charity with a huge heart. They are committed to supporting patients and campaign tirelessly to raise awareness and bring our pituitary conditions to the front of medical minds.
I started a blog last year in a bid to support and comfort others with chronic conditions. It was a leap into the unknown for me and quite a big jump as I’m normally very private with an optimistic and carefree outlook to life. By writing this blog I had to let people into my life and it was and still does make me feel vulnerable but it is also very cathartic. It coincided with Jay from The Foundation approaching me to do an article for the press to tell my story. If it was just an opportunity to tell my story I probably would have said no. I worry constantly that people think I’m seeking attention or asking for pity which is far from the truth. My condition whilst challenging has given me a new perspective on life and people. Without the extreme lows I would not appreciate the highs and the small things each day as I do now, so I don’t feel sorry for myself and don’t expect others to either. We all face challenges. My agenda for saying yes to speaking more publicly was for two reasons. 1) To give hope to those that are struck suddenly with chronic illness and help them feel less alone 2) To help raise the profile of pituitary conditions and the profile of a wonderful charity without who I may not be alive today.
In 2018 once my story was out there for friends, family and colleagues and I began to feel a bit more stable. I decided I wanted to take on a challenge with the hope that a couple of close friends or family would support by either taking part or by kindly sponsoring me. Again, the sole aim was to help raise the profile of a little known charity with a wealth of information. I asked Jay if there was anything London based I could do and quickly I signed up to abseil the orbital London. I casually put the feelers out to see who if anyone would join me and I can honestly say to this day I am still overwhelmed by the response I had. I don’t think the individuals involved will ever know how much their support meant. Not only did we 1) raise a load of money and 2) raise awareness of The Pituitary Foundation. Their support meant I have never felt less alone in my whole life. It gave me a boost to my recovery and a confidence that I could still partake in activities even if my illness took me on a rollercoaster along the way.
Messages of support from those that could not join, sponsorship from those that were able, people sharing my journey to raise awareness meant so much. I had a huge number of people overcome their fears for me, turn out to watch on a baking hot weekend with small babies, spectators giving up precious weekend time after a hard week at work to come out and support. I know my parents, sister and I felt and still feel incredibly emotional and grateful to everyone involved.
My Great Aunt runs a refreshments and cake sale in her village in the summer. I am hugely thankful that for the second year running donations will be going The Pituitary Foundation. A charity that I am sure they would not have heard of otherwise. This year I will hopefully be well enough to go along and help run.
Spreading the word
I have given GP packs to surgeries to help professionals feel more informed and these have been gratefully received. I know that if I have friends in medical professions unrelated to me that just by sharing my story they are helping to educate colleagues and as such making it a safer world for pit patients to live in.
I plan next year to take on another challenge... one not involving heights as my mum is desperate to take part and I know a few others who would happily join me.
I am proud to volunteer for The Pituitary Foundation and will continually raise awareness. I follow The Foundation on social media and I am constantly inspired by individuals who spread the word, give up their time and bring together a community of people.
For anyone who is thinking they’d like to help but don’t feel well enough, I would encourage you big or small it all counts and can really help your own wellbeing. Just by talking you can make a difference.
More about me
If you would like to read more about my journey then please feel free to read my blog https://sbm44.wordpress.com/2018/01/20/a-pea-size-problem-where-to-start/. My journey is individual and personal to me, as we all know the pituitary gland affects us all in different ways. No two people and treatments are the same and recovery and management varies. Mine is certainly a rollercoaster with highs lows and everything in between. The lows can be unexpected and just as you are feeling stable or seeing some progress something can unbalance and you will lose your footing. But you will rise again. I have a great team of family, friends, colleagues, NHS medical professionals at St George’s London and of course the fabulous Pituitary Foundation who I know I can call on anytime with any problem big or small. Don’t be afraid to reach out and talk.