The Pituitary Foundation approached me about this blog post in aid of Volunteers’ Week. This has been happening across the UK this week to celebrate contributions from volunteers, and during this time we like to share lots of volunteer related content across our communications and platforms. Especially at the moment when volunteers are being mentioned everywhere as we continue to hear the countless programmes and initiatives to enable more volunteering opportunities than ever before, as we face the COVID-19 battle together.
So volunteering is in my ‘blood’. Read on to follow my journey through volunteering highlighting the benefits for all.
Through my own struggles I am determined and privileged to have a platform through the Pituitary Foundation and my Active Essex Ambassador role to help support, encourage and offer others a unique experience by using my background to shape my existence in what can be a very challenging and uncertain pathway from illness, to diagnosis and to the juggling of daily life with potentially life threatening conditions.
My first taste of volunteering was when I was 13years old and my gymnastics coach asked me to help with the beginners. Since then I have had many roles within sporting and exercise environments and love the ability to be able to help others, apply skills and actually learn new things. However, after I became disabled and eventually became unable to work and things were not so good. It’s taken me a long time to get in a position where I can give back more to others.
So volunteering is in my ‘blood’ and I had so much support from The Pituitary Foundation after my diagnosis and treatments that when I saw that they still needed some help I jumped in and applied to be an Official Pituitary Foundation Campaigner. Luckily they understood my time was limited as I had turned to Para-Swimming and was at a high level so time was limited.
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.
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. 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;-
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.
I have taken the opportunity of being ‘gifted’ some time having ’semi’ retired from Para-Swimming and the COVD-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.
Establishing and advocating the link between The Undefeatable 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.
Before I conclude this blog I really want to share with you the passion and commitment of other volunteers and the work that can help to support you in my three main areas of work. As this has been posted especially for volunteer week here are some great links for you to they out
The Essex All Together programme is linked to the Active Essex Council website and is where my work lies. Its aim is to reach out to those with disabilities, medical conditions and mental health problems. It doesn’t matter where you live you can still tap into our work. We love to share our achievements!
But there are many other ambassadors and I would like to introduce you to two in particular.
Firstly Donna Cherie Robinson, who lives with many disabilities but is a shining star and promotes the Sport For Confidence Programme through her video talks. At the moment whilst her favourite sessions cannot run she is sharing her ‘top tips’ via video for you on how to cope if you are missing the programme as well.
Richard Naylor -Jones has been an extremely active ambassador on the programme from the beginning and is our Karate expert, he also suffers from both Chronic Fatigue and Mental Health problems. His latest contribution is starting a special series of 30min Karate sessions for everyone to try. These are 100% safe to try!
You can also find us on twitter at #EssexAllTogether
We also have a closed group just for volunteers so we can share our own experiences and link up with Holly Adams and Hayley Chapman who are the ones that guide us! With our merry band of contributors posting to this page there is always plenty of content that you can access.
Next up is The Pituitary Foundation - A small charity that packs a big punch and has Sian Pitman managing over 100 volunteers and the Official Campaigners keeps us on our toes with plenty of information and news. Even if you don’t have a Pituitary Condition some of the content can be useful for anyone at all. Some of the latest are:
Pituitary across the globe. A report about how the Foundation are linking with others around the world to get the best information and practice possible for members.
As we are in Volunteering week some success that has been achieved from the team makes us all feel greatly appreciated and you can follow the stories of their journey’s through blog postings throughout the week. Lots of updates and celebration of achievements & what volunteers do to help these small but fantastic charities. It’s reading things like this that make you feel proud and part of team.
Then we look at the ‘We Are Undefeatable programme’ and they are producing more and more content all the time across their Website and social media pages. They rely on volunteers to tell their stories about life with long term disabilities and health conditions, advocating how sport and exercise can support you. I particularly like the following;
Tania Talks about her activity levels at the link below:
Head to the You Tube Homepage here where you can select a specific charity that is linked to the programme;
If that doesn’t cover you then how about heading to the link below and find something that jumps out at you. There are plenty of options!
These include: a seven minute seated workout for older people;
You can also find them on Facebook at;
And with that I close! Enough to keep you going for a while there! A bit of a whistle stop tour but hopefully a rounded and informative blog to highlight the work volunteers have been doing up and down the country even before COVID-19 took hold of us.
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. But in this week please celebrate those who have volunteered for years and years without the recognition that they deserve. Not that we mind - that isn’t why we do it but hopefully the number of people taking up roles within their communities can be a positive outcome of the horrendous battle that we have all had to face.
So on that note, take care, be safe and stay alert.
Coming up next week it's Carers turn for recognition.
Carers Week Draws To An End - Introducing my lifeline to the outside world.
As we approach the end of carers week I want to focus on the person who is my life, who is my guiding light, my anchor and my number one supporter. However, before I begin here’s an extract from the Carers Week website to set the tone and scene of this extremely personal and poignant piece that pays tribute to someone who I can never thank enough and who is the most important part of my life. A relationship like no other…..
Before I begin, let’s set the scene on a National Scale;
There are 6.5 million people in the UK who are carers. They are looking after a family member or friend who has a disability, mental or physical illness or who needs extra help as they grow older.
Caring's impact on all aspects of life from relationships and health to finances and work should not be underestimated, and carers are facing even more difficult circumstances this year. Whilst many feel that caring is one of the most important things they do, its challenges should not be underestimated. Caring without the right information and support can be tough. (https://www.carersweek.org)