Volunteers' Week: Suzanne's Story

Suzanne is one of our Volunteer Campaigners.

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I like to think that my active Volunteer Campaigner role for The Foundation is extremely important. It also works alongside my role as a Disability Sports Ambassador Role with Essex County Council. The two roles work really well together as they are targeting the same type of audience and delivery methods are very similar.

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I had so much support from The Pituitary Foundation after my diagnosis and treatments utilising key resources and magazines that when the opportunity to become an official campaigner for The Foundation I jumped in to help. Swimming filled my physical needs and kept me very busy but there was something missing and that was something to mentally stretch me and fill in the gaps of time when I really couldn’t do too much, so the opportunity to become a pituitary campaigner came along at just the right time for me.

I love the support, the flexibility and patience of the team. It has allowed me to utilise my expertise from teaching and pushed me to acquire new skills to support the team and give back to others.

Initially my first volunteering was around advocacy over social media, taking leaflets to swimming pools etc as i competed in Para-Swimming to a high level and hospitals whenever family or I had appointments. The then Volunteers Manager, Rosa, was always sending me posters!

My pituitary journey began back in 2008 when I became very unwell. Diagnosis of a pituitary adenoma and apoplexy was a very rocky road. Things progressed between high prolactin levels, pituitary insufficiency and then Addison’s disease.

Having a psychotic episode in 2016 sparked a need to change my outlook on life completely.

My approach to treatment now has to incorporate the traditional medication for Addison’s and my other medical neurological disabilities and conditions alongside physiotherapy, yoga, pacing, logging, analysing my health. It’s a rounded approach and needs meticulous planning.

My three most significant achievements since volunteering are;-

1. My log for children with Pituitary conditions. This took a LONG time to complete and the foundation were very patient with me on this one! Some amazing help from Pat McBride with the character graphics and eventually it was complete and the feedback was worth the effort. The purpose of which is to give children a fun Journal to complete which they can take to Doctor and nurse appointments to show how they are feeling but also helping them learn about what will happen when they go the appointments, who they may see and what might happen.

 2.  I have taken the opportunity of being ‘gifted’ some time having ’semi’ retired from Para-Swimming and the COVID-19 lock down to enable me to set up properly my new website that I am extremely proud and has taken a long time to create (my fourth attempt) that gives me a platform on which to share my more ‘regular’ blog posts based around my two roles and also I hope that I have finally found the right ‘balance’ to give back as much as we can to an amazing charity. Promoting the links between mental health for those with long term medical conditions and or disabilities has been well received and through the structure of the monthly focus from the Essex programme I have been able to intertwine my two roles so giving greater coverage.

3. Establishing and advocating the link between The Undefeatables Programme, The Pituitary Foundation and Active Essex, in order that they value the work we all do so that when the opportunity arises we can be the next ‘official’ partners of the programme which will support the promotion of the Foundation, Active Essex Altogether programme and potentially lead to greater funding, support and growth in membership and awareness through the medical and exercise/sports associations.

Most of all it’s been about being a part of something special. Joining hard working teams in some small way is my connection with the outside world. An opportunity to feel like I am helping without making my disabilities and health worse. Although, I do tend to throw myself into things so I have to be careful with my own health and well being which sometimes gets pushed aside.

Volunteering is high on the agenda right now so I’d encourage anyone to give it a try. It really is worth the effort and there’s a role out there for everyone, you just have to find it. Follow your heart to something you are passionate about and I am certain you could find your perfect role.

Take care, be safe and stay alert. 

Read Suzanne's blog here >

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