‘It is estimated that there are approximately 70,000 people with a Pituitary Condition in the United Kingdom. To meet the need for information and support The Pituitary Foundation was set up in 1994 and was subsequently registered as a charity in September 1996’. (https://www.pituitary.org.uk/about-us/who-we-are/)
This small band of 10 staff and 100 plus volunteers work tirelessly to support those with Pituitary conditions. There are currently 2300 members to keep updated. Exercise is good for all of us but for numerous reasons being ‘fit’ and well is the starting part for any person with a Pituitary Condition which if not under control can have serious effects on the body and be potentially life threatening.
Let’s start this with a vital quote….
‘The Pituitary Foundation is a national support and information organisation for pituitary patients, their families, friends and carers. We are the UK's leading charity providing support to people affected by disorders of the pituitary gland such as Acromegaly, Cushing's, Prolactinoma, Diabetes Insipidus and Hypopituitarism’.(www.Pituitary.org.uk).
However, there is so much more than this available and many of the publications and newsletters produced can be utilised by people with other long term health conditions. There will be variances but transferrable knowledge is the key to this sharing of information and why we are focusing on just one health organisation.
A definition to begin; ’The Dictionary App’ has the definition of ‘health’ as it’s sole meaning for Fitness! This links well into this perspective of The Pituitary Foundation who are a ‘Health’ Charity supporting the thousands of people across the UK who have conditions of the Pituitary gland, which for something so small can cause so many problems. Being an official ‘rare disease’ and small charity it works tirelessly to improve peoples health but not just in the way you may perceive it to be. Linking with other charities and top research organisations and always promoting and participating in the Rare Condition Conventions and awareness days across the UK and World wide to give a truly great depth of knowledge and understanding.
At this time it seems that health is really catching the eye of many. With the huge numbers of people putting on weight during lockdown and ‘health’ becoming a precious commodity in the battle to not only avoid Corona Virus but to be able to fight it off if we do catch it.
It’s really tough for those of use with long term health conditions and this is way the focus here is the Pituitary Foundation and their perception of ‘health’ versus ‘fitness’. They are very closely intertwined and without one you can’t really have the other. Although perhaps we can ……
We can’t think of anyone more successful and domineering and passionate about this than The Pituitary Foundation. They are like the guardian angels of charities out fighting for us and desperately trying to get us to that point. Continuous health and guidance documents have been pulled together over the pandemic despite staff only working at 80% hours. This isn’t to say that they weren’t promoting all this before, but it shows more how things are now more challenging, more potential for the smaller charities to have a really big impact as they interact with significant NHS, Sport England, Local Councils and Activity Alliance programmes arming us with the potential to fight the corona virus and forge ahead with new, fresh and accessible ideas delivered initially through programmes such as the We Are Undefeatables which we will look at next week in detail as a transitional step from this blog into basic fitness and perhaps then we can see how we can adapt to symptoms and complications. In theory they support people with Pituitary Conditions. So really we have no excuse to neglect our health or fitness levels.
Health charities and organisations such as these give a platform from which people can build their confidence, move forward and be happier and healthier as we progress with our new ‘normal’. Perhaps those of us with long term medial conditions related to the pituitary gland have actually kept themselves in better shape because of the constant updates and supports that we have been lucky to receive. Not everyone has put weight on though. Many have found space in their lives to actually do more exercise but of course it’s a balancing act. Clear, constructive guidance and information. Perhaps we emerge from lockdown with an element of anxiety but there has also been clear support and guidance with this as well.
So I mentioned ‘intertwining health and fitness and that’s exactly what is on offer here. Of course we could inundate you with all the publications and knowledge of Pituitary Conditions but that won’t necessarily work on It’s own. What we need is the next part and through the variety of fundraising events that are based around found physical activity there is potential to try something out in a safe manner, abiding by the rules and regulations of ‘safe and respectable distancing’ many opportunities are up and running and volunteers coming up with innovative ideas that can be completed in the home or garden if the fear of going out is still too much.
However, Pat McBride From The Pituitary Foundation says;
“For some people with pituitary conditions, it might be a challenge simply to get up and get dressed, let alone think about exercising. Some patients may feel more able to do daily physical activities such as running, jogging and swimming.
Energy levels, fatigue etc certainly differ for all.” (Pat McBride 27/08/20)
So of course this is high in the importance level and we will tackle low level home exercise through the We Are Undefeatables Campaign next week. However, it does seem very much like this cycle for ;
Health = Fitness to take participate.
Fitness participation = pleasure and improved health.
Pleasure in improved health = Challenge to give back.
Challenge to give back = Fund-raising / Volunteering.
Many wish to stay a part of this ‘tight knit community’ that has been created and is testament to the key workers making their support feel so unique and helpful. Now with fundraising events that have low registration fees and low fundraising targets these are more accessible to people than ever before. At the moment location and levels of fitness are a potential issue to consider and these should be utilised as a goal on the journey to improving health, well being and mental health, allowing you to have the confidence in your own body to go out and take on a challenge or complete one at home, no matter how large or small that may be.
Take a look on the Facebook page link below to browse and show your interest. You can also look at what others have been taking part in during lockdown for some inspirational ideas!
The Pituitary Golf Foundation has just been set up….
‘The Pituitary Foundation Golf Society has been set up as a way to help fellow pituitary condition sufferers connect with each other through the love of golf. We will be putting on golf society day events across the UK, raising much needed funds for the Pituitary Foundation whilst enjoying a round of golf, lunch, a catch up and maybe a few drinks along the way. We welcome golfers of all abilities to join us, competing for prizes on each day and also a nationwide order of merit league table to be crowned overall champion. Like and follow this page to be kept up to date on future events organised. Whilst the official society days probably wont start until 2021, meet-ups may be organised as a way of getting to know each other before the competitions start’.
(THE PITUITARY FOUNDATION GOLF SOCIETY·FRIDAY, JULY 31, 2020)·
Interested? Click this link and get joined up! Sure that Golf Buggies will be available for those whose mobility may not be able to complete all of the walking! Plus the pre-meet up opportunities and online messaging could have excellent mental health benefits and a way to build up slowly to a whole day event.(https://www.facebook.com/pituitaryfoundation/)
The All Important Pituitary Foundation Contacts & Relevant Publications
The How Can We Support Page
This page offers so much in terms of helplines, support groups, peer support and forums to access.
Here are a list of blogs relating to Pituitary Conditions and here at Time to Heal we are honoured to be included on this list.
Caring for a child with a pituitary condition can be extremely challenging and so the Foundation have produced these great publications.
Inspired by this at Time to Heal we have produced our own free downloadable log book for children with Pituitary Conditions. It’s aim is to support your child through their condition and understand what is happening to them. They can record information about their health but at the same time have fun doing it and creating craft items including a ‘Dazzle Box’, word searches, activities, recipes and more! Download your copy at the link below. This has been endorsed by The Pituitary Foundation as a sound document to work with and Pat McBride even stepped in to help me with the fantastic characters.
Early Intervention Of Poor Health
Vital new guidelines and an NHS Card have been produced during lockdown. Limited supplies are available from the Doctors but you can download the card below in case needed before stocks of the proper card arrive and are issued. These are for anyone needeing to take steroid medication for their health condition.
Further details can be found at the link below where you can download the card.
You can also find deals on the Pituitary Foundation about Sick Day Rules which are crucial to management of health on the ability to recover properly, returning to ‘normal’ in the safest possible way.
Patients Needing Emergency Injections
Following on for those of you with conditions such as Addison’s, Pituitary insufficiency etc, what better time than now to ensure you and your loved ones know how to inject properly in case of emergency. A good time to brush up on those skills, especially if you haven’t needed to inject for sometime. Not only that, when was the last time you checked your vials? Make sure they are still in date. If not get to the doctors for your prescription!
On A National Scale
Some may have been inspired by Prime Minister Boris Johnson, latching onto his own get ‘fit’ regime after his ordeal with COVID-19, there is so much help available and so what better time to get ourselves ’fit for health’, so we can progress to ‘fit’ to exercise, then onto healthier, happier and stronger individuals with a common cause. With the launch of the new GOV.UK Obesity stagey comes a new programme
You can read the complete document at the link below;
The Better Health Programme has a wealth of resources to help you get your health on the ladder and incorporating some simple exercise.
COVID-19 Vaccine Trials
Sign up to volunteer for the vaccine trial. They are on the look out for people from adiverse range of backgrounds and ethnic minorities, especially those with underlying medical conditions. 100,000 people have already signed up including Time To Heal. Definitely something that could be a last saver or changer. This could be especially important for those with LTHC’s, as well as helping save the lives of many and potentially your own family and friends. Just click the link below;
Coming Up Next Week - What Does Fitness Mean To The We Are Undefeatables Campaign
‘MAKE THE MOST OF YOUR GOOD DAYS’ ‘Each day, listen to your body and do what feels comfortable to you. Make the most of your good days. On your not-so-good days, you may need to do less. Small amounts of activity all add up’.
This campaign re-launched in July showcasing the need for those with long term health conditions to engage in getting themselves ‘fit’ and healthy in a variety of ways. In this blog we’ll delve into some of the innovative programmes. So if you want to find out what a ‘Message Bot’ is? What 5 in 5 cards is all about? Plus a whole lot more then this is just for you… got to start that ladder climb from the bottom up, no excuses, theres something that everyone can do here! Let’s do it…
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