The Science Behind Decluttering Clearing your living space can help you declutter your mind. Why? Because a tidy environment can reduce stress and help you focus. To declutter your mind when facing a long-term health condition, focus on self-care, practice mindfulness, and prioritise activities that bring you joy and relaxation. You may also find it easier to set realistic goals and seeking support from others.  How I Declutter My Mind — Get More Clarity And Stop Feeling Overwhelmed   offers 11 practical tips that will help get rid of the brain fog that robs you of a clear and focused mind and the essential things in life. Start decluttering small areas Start small with an area like your desk or one drawer. If something doesn’t “spark joy”, recycle, sell or gift it. Or, just clear one thing away — take out the rubbish or put the mug that’s been on your desk for a week in the dishwasher. See? Instant mood boost. Decluttering your mind Too busy? Quickly de-cluttering your mind can be achieved through practices like mindful breathing, writing down thoughts, and taking breaks. These techniques help to reduce mental clutter by providing a way to process and release thoughts, and also by creating space for mental rest.  7 minute declutter Take about 7 minutes out of your day when you may be feeling stressed or overwhelmed to practice this Short Calming Mindfulness Meditation to Clear the Clutter in your Mind - Mindful Movement . It will help you to identify what you can do to reorganise, get rid of what you don’t need and allow you to visually represent clearing your stress away. Decluttering for self-care and well-being Physical health: Ensure you're getting enough sleep, eating a balanced diet, and engaging in physical activity as much as your condition allows.  Mental health: Practice mindfulness, meditation, or deep breathing exercises to calm your mind and reduce stress.  Engage in enjoyable activities: Make time for hobbies, reading, spending time in nature, or connecting with loved ones.  Awareness & Gratitude Become aware of recurring worries, anxieties, or negative self-talk.  Replace negative thoughts with more positive and realistic ones.  Focus on the positive aspects of your life and the things you are grateful for. Break down large tasks into smaller, manageable steps to avoid feeling overwhelmed.  Don't hesitate to ask for help from family or friends with tasks that you find difficult or stressful. Protect your energy and time by declining obligations that you don't need to take on.  Shape Your Social Environment Seek support from friends, family, or support groups. Don't hesitate to reach out to a therapist or counsellor for guidance and support.  A tidy and clutter-free space can create a more peaceful and focused mind. Pay attention to your thoughts and feelings without judgment, allowing yourself to be present in the moment.  Schedule regular breaks throughout the day to rest and recharge. Acknowledge that you are doing your best and that it's okay to not be perfect.  Further Reading and Helpful Links Finding Focus - Preview How to declutter your desk to improve your mental health Improve mental clarity with these 11 strategies How to get your life together: 10 tips to help you thrive Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

If pain is having a significant impact on your life, attending a pain clinic and establishing a pain management plan can be a life-changing experience. What is The Tame The Beast Pain Theory and how can it help? In Part One we looked at: The Tame The Beast pain theory How to know if my pain system is being protective: How to re-train my pain system to be less protective and how to know if I’m safe to move? Read Part 1 Pain Management Is A Science The Tame The Beast method of pain management looks at how pain scientists now view pain and use a variety of measures to treat it successfully. It highlights what protective and overprotective pain are and, critically notes the fact that if your body produces pain that is a good thing! Sound odd? It means that when you overdo something or something that triggers your pain, like an injury or illness your body will have you know straight away. Building your pain management plan A pain management plan exists for healthcare professionals who support people in managing Chronic Pain. Using a multidisciplinary concept - drawing on each person's knowledge, and utilising various treatment methods. This may include medication, injections, infusions, complementary therapies, specialised interventions and strategies to provide a unique targeted approach. For this to occur we need to visit the final three stages of the Tame The Beast pain theory. How do I know if my health professional understands modern pain science? Ask them these questions (they should say yes to each one): Do you understand and believe in the bio-psychosocial model of pain? Have you ever heard of explaining pain? Can you help me understand my pain system? Can you teach me how to manage my recovery? Can you give me the skills to master my situation? ( Tame The Beast - Understanding ) What questions can I ask myself? Will I re-injure myself? Will I get better? Can I speed up my recovery? Is learning all those new skills helpful? How do I help others? ( Tame the Beast - Understanding ) Tame The Beast Website: ‘ Rest and avoiding activity and movement tend to make an overprotective pain system even more protective. The chance of ongoing pain is higher if you stop moving, your system adapts to being stationary. Exercise and movement are the best ways to reduce your pain. As you load your tissues you will become stronger, and your stronger body will be more resilient to injury. Exercise and movement turn down your protection setting ’. From this, they have discovered that there are two key reasons why people don’t get better; Avoidance Pathway - simply not doing anything because of the pain Boom-Bust Cycle - doing everything regardless of pain levels and giving up because the pain becomes unbearable. It takes a lot of courage, persistence, guidance and patience to get better or improve pain levels. Generally, advice is to aim for being focused, setting goals, and trying to be optimistic about the future wherever possible. Having a clinical pain team and access to their pain management programmes and networks will also be of great advantage. The longer your pain has existed will also make it more complex Sadly there are no quick fixes. The pain system needs to be reset, this could take years. Simple things like eating plenty of fruit and vegetables, getting enough rest, learning new things and continuing to understand your pain are all anti-inflammatory. If sleep is a problem then a separate Sleep Management Plan may be needed as an early intervention. Reducing stressful situations and managing anxiety can also help. Surprisingly though many medications can slow down our recovery. How Movement Can Help As we have touched on in both the ‘moving more question’ and ‘Journey to Recovery’ movement is one key factor. NHS England advocates these gentle Sitting Exercises as a simple way to start to move. All done as the title suggests by sitting down and are good starting from ‘nothing level’. The aim is to complete these twice a week, gradually increasing the number of repetitions. There are also three other exercise activities for Flexibility , Strength and Balance . As a group, these are all-around programmes to help prevent falls and improve mobility. Pilates improving chronic pain Pilates For Chronic Back Pain is a 30-minute class that focuses on improving the strength and flexibility of muscles that support the back. Completed regularly, Pilates is known to help with posture, balance, joint mobility and relieving stress. Always speak to a medical professional before trying these classes. Chair-based Pilates offers an alternative for those who prefer to or find it easier to start by sitting rather than lying on the floor. Mobilates is the perfect fit for this with experienced instructors all with lived experience who can adapt every move to suit you and your body and how it feels on any given day. With a full range of classes available. If you are a member check out the video library or consider trying a different class. You can also book a 1-1 if you feel you need some specialised help. An Alternative Approach If Tame The Beast isn’t for you, then you could try The Pain Toolkit, highly recognised by the NHS. Pete Moore himself has persistent pain, asthma, and osteoarthritis, and has put these tools together with the help of friends, family and health care professionals. Moore gives acknowledgement to the Bradford Pain Rehabilitation Programme team and NHS Kirklees. ( Pain Toolkit ) Next Steps To Manage Pain Whilst we may need to tackle many parts and components here, this is a long-term programme for most people with chronic pain, due to the complexity and prevalence of multiple medical conditions, healthcare professionals and treatment options available. There may be several things to try however, slow and steady wins the race. It’s important at all stages to allow the body to adapt to a change before assessing its effect, significance, impact or lack of impact before moving on to the next step. Helpful Links Tame The Beast Tame The Beast - Understanding Pain Live Well With Pain Live Well With Pain - Sleep Leaflet PDF Pain Tool Kit - Home Page Pain Tool Kit - Patient Resources NHS - Every Mind Matters - Sleep NHS - Every Mind Matters - Challenges - Health Issues NHS - Sitting Exercises NHS - Flexibility Exercises NHS - Strength Exercises NHS - Balance Exercises NHS - Chair-Based Pilates Exercises NHS - Pilates Exercises For Chronic Back Pain Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

Part Two - The key challenges people face when living with multiple health conditions The impact of a diagnosis of a chronic health condition can be devastating . The need to change your lifestyle, and learn new and often difficult words and meanings. The challenge of explaining to others, finding out what you need to know. Taking regular medication and finding new ways to enjoy life as you did before. Covid-19 The pandemic has made some of these challenges even greater. There's more pressure to manage our conditions ourselves with longer waiting times and difficulties having checkups and GP appointments when needed. The stresses of medications not always being available and alternatives being sought. The top problems faced include: Understanding — or lack of it — this can be from family, friends or even medical professionals. Doctor letters not appearing on your file — with many secretaries still working remotely there are often delays. GPs are often unaware of appointments patients have had and the outcome of these. The delays can have a knock-on effect for new medications to be introduced or referrals to be made. Mental health notes can be ‘hidden’ from your consultant(s). Often run by separate departments and not based in actual hospitals mental health services do not always communicate with other medical professionals involved in our care meaning they are unaware of the difficulties we face unless we inform them. Organisation — the time needed to plan, stay organised and on top of our own appointments and treatments is demanding and in itself can cause fatigue, and frustration and take up considerable amounts of time. Multiple health locations — hospitals we attend may be in different areas — different ways of working and more difficult for medical professionals to work together. No linking between all departments/specialities concerned with the treatment. Some Doctors and hospitals see and implement measures for good communication between each other. In some cases for example a designated professional such as a pain management consultant will co-ordinate between everyone involved but not everyone is lucky enough to have this opportunity. Awaiting surgery and its impact on other conditions is something that has come to prominence since the COVID pandemic and the numerous strikes that have taken place. The NHS is under constant pressure. Delays in treatment for one condition can exaggerate another. This can lead to additional problems. That could be increased pain or a deterioration in mental health. Amount of appointments — with multiple health conditions the amount of appointments needed will be increased and the energy used and time taken up by these is always going to have an impact. Not only on basic health but also our ability to be able to complete other daily chores and often the need to cancel more enjoyable activities to accommodate appointments. If these are useful then the benefits are great. If they don’t support us or help us improve they can leave us feeling low and resentful. The need to be an expert on all conditions managed — Understanding one condition can be tough, especially after diagnosis. There is often a lot to take in and to manage. New medications — new diets — lifestyle changes and the psychological impacts. Add in multiple conditions and how one affects the other and there are additional pitfalls. The need to research and find our own treatments can also be a factor. Knowing where to start is often difficult. As you can see managing multiple health conditions is a complex and demanding situation to find yourself in. Recognising this is a good, positive and helpful step to take. A reminder that you are doing well. That you are enough. That there are brighter days to come. Understanding there will be good days and there will be hard days. Staying motivated is a challenge. Being part of a community such as Mobilates is a positive step that you can take to support your journey. Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

Part 1 (Image from @colourblind_Zebra) The Truth About Life With Multiple Health Conditions Living with multiple health conditions is a challenging situation to find yourself in. When you see different medical professionals for differing conditions and from different specialities it can seem like all your time is spent juggling symptoms — organising medical notes and preparing for appointments. Chronic Pain Is A Full Time Job Pain, medications, treatments and discomfort - they're like having a full-time job. Many people expereince the daily chores like physiotherapy, medication preparation, hospital visits and balancing mental and physical health. Staying connected can be difficult as multiple conditions can isolate people from the typical work/life rhythms that able blodiedpeople experience. Being a part of the community, having a purpose, resting, exercising, eating and hydrating properly, all things that need careful consideration. Symptoms & Mental Health For any people symptoms change over time, sometimes they get better, other times they get worse. Working out what condition is causing which symptoms can be problematic and stressful. Many people experience multiple changes to medication, and not knowing what kind of day they have ahead of them regarding pain or mobility issues. On top of that, many people feel an obligation a need to maintain some normality in everyday life. It's difficult to seek glimmers of hope and happiness when symptoms are unpredictable. Finding Glimmers We encourage our Mobilates Members to add something fun to their day wherever possible. It could be a walk, a trip to the shops, a drink at a local cafe or a visit to a place of nature. Some light in the darkness to support mental health and increase the motivation to get up each day. Staying locked up inside can feel like the easiest thing to do, sometimes feels like the right thing to do. The key challenges faced for people living with multiple health conditions Understanding — or lack thereof Doctor letters not appearing on your file Mental health ‘hidden’ from your consultants and GP Organisation — fatigue/time/planning Multiple health locations — hospitals may be in different areas No linking between all departments/specialities concerned with the treatment Awaiting surgery and its impact on other conditions Amount of appointments — the energy used and time taken up Lack of communication between medical professionals involved in the care The need to be an expert on all conditions managed Top 10 tips for those with LTHCs Listen to your body Self-care is Important Establish a good support network Understand your conditions Be aware of how conditions interlink Inform family and friends Organise medical records in a folder Plan ahead — control as much as you can Have someone attend appointments with you Write down questions and answers for those involved in your medical care Organising your medical notes into a folder This will help you to track your medical conditions — provide a good reference for yourself and anyone involved in your care — and ensure you have the answers to any questions GPs, nurses and doctors from different specialities may wish to ask you. Your main medical folder should include: A section for each speciality of medicine that you have a condition for Information about your most serious condition and how to manage it should be prominent A list of medication taken in each section — ideally a copy of your repeat prescription Your most recent letters from the hospital in date order Appointment letters that you can refer to for your next appointment At the rear of your folder it is helpful to have: A full list of medications and when taken, including the dosage and why taken List of appointments by date/month/year Details of any health/travel insurance you may have in case of an emergency Details of vaccines you have had Preparing for an appointment It may seem like hard work and take time but preparation for an appointment will ensure you get as much from it as possible. Over time preparation will become easier and like a ‘routine’. Things I like to include are: Main symptoms experienced Concerns and questions General updates from other appointments Medication changes Cross over problems Anything that is affecting my conditions — for example, mental health or stressful situations My way of organising this is to pop a few notes for each of the above onto Post-it notes and then stick them onto a piece of A4 paper which can then be put into the relevant section of my folder. In this way, I can ‘reuse’ certain lists for other appointments and I have space to write down answers to my questions either during or straight after my appointment. Top 10 things that help me get through the day Self-Care Nature Movement Healthy food Regular medication times Good hydration Relaxation Visualisation Connectivity Getting good quality sleep Great resources to enable family and friends to understand how you feel Colourblind Zebra has a great blog that has 12 things not to say to people who have chronic conditions many of which can be invisible. They set out the challenges and demands of everyday living and the impact that these statements can have on us. The main culprits are: I understand your fatigue But you could do that yesterday Everyone gets sick Just try to push through It must be nice to stay home all day and not have to go to work or school At least you don’t have… But You Don’t Look Sick is another great reference that helps people understand what it is really like to live with chronic conditions. The Spoon Theory written by Christine Miserandino was created as a way to express the choices and problems that those with chronic conditions face. Using spoons as an example to represent energy and the number of daily tasks possible and deciding how to use them each day. Subtle ways to communicate how you feel/express that something is wrong Stickman Communications created by Hannah Ensor is a method of communicating and aiding understanding through the use of stickman drawings and simple descriptions. Her range of products includes laminated cards, Status Square Clips and new to the range The Symptom Wristband which is double-sided — has different wording on each side which tells people discreetly at any moment that either —now is not too bad or now is tough. Hannah Ensor said (on one of her cards) “When my brain fog is bad, I love being able to give friends, family, and colleagues the heads up without having to talk about it. Wearing this on a lanyard, or putting it next to me does the trick nicely”. The Sunflower is a global inclusive network that supports those with invisible disabilities. The flower represents a person's condition(s) discreetly. Organisations sign up to the scheme and employees recognise the emblem and are immediately alerted to the fact that additional help may be required. You can purchase a range of Sunflower products directly from the shop which includes badges, stickers, lanyards and face coverings. The key to supporting those with long-term health conditions… Don’t make the chronically unwell feel more isolated and stigmatised than they already do Accept them into the community Give them a chance to make some progress without judgment — resentment or fear Acceptance is crucial — understanding and support key Having multiple health conditions can affect your ability to work and limit what you can do in your social life. Things like pain, low mood, mobility, financial problems, and fatigue can all be made worse with multiple conditions. It’s a real challenge and should not be underestimated. Useful Links 12 Things Not to Say to People with a Chronic or Invisible Illness The Spoon Theory by Christine Miserandino Stickman Communications — Symptom Wristband Stickman Communications — Status Squares Sunflower Emblem Products Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

What is a Brain Break? A brain break is a short, structured break designed to help reset and refocus the mind and body after a period of focused work or concentration, often involving physical movement or mindfulness activities For individuals with long-term health conditions, incorporating "brain breaks" – can significantly improve mental and physical well-being, reduce stress, and enhance focus and cognitive function.  Pilates Can Help Factoring in your pilates classes throughout the day and using them as brain breaks can be really effective, make you more productive and support both your mental and physical health. If classes don’t fit with your schedule then utilising recordings and the video library are great ways to incorporate some movement. It also allows you to re-visit favourite sessions and select sections of classes when a whole one feels too much or you just don’t have the space or energy. Having time to focus on yourself and what your body needs is a great way to manage your day. Here's how brain breaks can be beneficial:  Mental Health Benefits: Stress Reduction: Brain breaks help calm the nervous system and shift brain states, promoting relaxation and reducing stress.  Enhanced Mood: Movement and mindfulness activities can boost mood and improve overall well-being.  Cognitive Function: Breaks improve focus, attention, and concentration, which can be particularly helpful for individuals with conditions that impact cognitive abilities.  Reduced Mental Fatigue: Regular breaks combat mental fatigue and enhance productivity.  Physical Health Benefits: Increased Blood Flow: Physical movement during brain breaks increases blood flow to the brain, improving focus and alertness.  Reduced Risk of Chronic Conditions: Prolonged sitting can increase the risk of chronic health conditions, so incorporating movement breaks can help mitigate this risk.  Improved Physical Well-being: Breaks can help individuals with long-term conditions manage their physical symptoms and improve their overall physical health.  Long-Term Health Management: Mindfulness and Self-Care: Brain breaks encourage mindfulness and self-care practices, which are crucial for managing long-term health conditions.  Improved Adherence to Treatment Plans: By improving mental and physical well-being, brain breaks can help individuals stay motivated and adhere to their treatment plans.  The first step Take a simple, small brain break. Drinking a glass of water or taking a deep breath counts. Integrate Breaks into Daily Routine: Schedule regular brain breaks throughout the day, especially during periods of intense focus or prolonged sitting.  Make Breaks Accessible: Ensure that brain breaks are easy to access and don't require special equipment or preparation.  Personalise Breaks: Choose brain break activities that suit individual preferences and needs.  Start Small: Begin with short breaks and gradually increase the duration and frequency as needed.  Be Mindful: During breaks, focus on the activity and allow yourself to fully relax and recharge.  The science Taking regular micro-breaks (less than 10 minutes) is proven to improve performance, motivation, and focus, as well as increase overall well-being and decrease stress. The secret Stand up or move around while you’re taking your brain break for extra benefits. Set an alarm on your phone at intervals throughout the day to remind you to take a brain break (bonus points if you move around during your break). The extra step Want to go further? Try this great 60-second mindfulness activity, Escape the Chaos: Mindfulness Brain Break to Break Free ,  intended to take us away from scrolling through our phones. For a slightly longer break, you could try Daily Calm's 10 Minute Mindfulness Meditation - Be Present . You can listen to the whole session or select from ‘key moments’ and focus on specific areas of the body, including the pelvis, abdomen and forehead. Further Reading and Research Micro breaks: the importance of taking a break from work How to take a mental health break (and 8 signs you need one) 20+ self-care practices to help you prioritise your wellbeing Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

(Campaign Video) Rare Diseases Impact 300 million people Worldwide Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers. Rare diseases are those that affect fewer than 1 in 2000. It is thought that the main challenges faced by those living with rare diseases are: The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients. Owing to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease but also from patient to patient suffering from the same disease. Research needs to be international to ensure that experts, researchers and clinicians are connected Rare Diseases & Human Rights Rare Disease Day is the opportunity to advocate for rare diseases as a human rights priority at local, national and international levels as we work towards a more inclusive society. Rare Disease Day is a great example of how progress continues to be made, with events being held worldwide each year. Beginning in 2008, when events took place in just 18 countries, Rare Disease Day has taken place every year since, with events being held in over 100 countries in 2024. The Pituitary Foundation  are marking Rare Disease Day by sharing stories from their community, to highlight the impact of rare diseases and the great ways the community get involved to raise awareness of rare conditions. As part of this, they are sharing stories from fundraisers, volunteers, endocrine nurses and more. There are also some stories from people who have Ehlers-Danlos Syndrome. Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support for skin, tendons, ligaments, blood vessels, internal organs and bones. Katherine  and Alyssa  have both shared their stories to support others. You also connect with others with EDS through the Rare Connect Community . Here you can read updates, hear other people's stories, see announcements relating to EDS and access relevant resources. Rare Disease Links can be found below, which include stories of those living with a broad range of rare conditions, events taking place throughout the world and downloads that you can share on social media: Rare Disease Day 2025 Meet Our Heroes Organisation Friends Rare Disease Day Events Rare Disease Day Downloads Rare Disease Day News The Pituitary Foundation - Rare Disease Day Stories Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

What is Grounding? "Grounding yourself" means finding stability and focus, especially when you're feeling stressed or anxious. It can also mean reconnecting with the present moment, your senses and your surroundings.  This technique aims to bring you out of anxious thoughts, and return you from negative, challenging emotions to the present. Refocusing on what is happening right now distracts your mind from unwanted experiences. Pilates and Grounding Pilates can promote grounding through its focus on body awareness, mindful movement, and breathwork, encouraging a connection to the present moment and the body's foundation. For people with long-term health conditions, grounding, or "earthing," which can involve direct contact with the Earth's surface, may offer potential benefits like reduced inflammation, improved sleep, and pain relief, though more research is needed to confirm its effectiveness.  The Science Of Grounding Exercises Recent research tells us that the mind and body are connected and that by tuning into how you’re physically feeling, you can begin to feel calmer and more centred. That’s because the parts of the brain that control your thinking and planning can sometimes lead to ruminating, which can raise our stress. By focusing on our senses we can break the ruminative cycles, improving even our involuntary functions like blood pressure and heartbeat. Potential Benefits for people with long-term health conditions: Reduced Inflammation: Some research suggests grounding may help reduce inflammation, a common factor in many chronic conditions.  Improved Sleep: Grounding may promote better sleep quality, which is crucial for managing chronic conditions and overall well-being.  Pain Relief: Grounding may help alleviate chronic pain, a common symptom experienced by people with long-term health conditions Stress Reduction: Grounding may help reduce stress, which can exacerbate chronic conditions.  Improved Immune Response: Some studies suggest that grounding may enhance the body's immune response.  Wound Healing: Grounding may promote faster wound healing.  The Secret to Successful Grounding Techniques Tune into your senses to help you ground yourself in the body. Focus on what you can see, feel, hear, smell, and taste. That, and a few deep breaths should make you feel much more connected to your body. Root-ground your body  is a great place to get started with a guided grounding exercise by Jay Shetty. The poster below has some really simple yet effective physical grounding techniques which require very little time or effort to implement into your day making them great for people with low energy, fatigue and health conditions/disabilities. Extra Grounding Steps Tune into the Senses for 6 minutes with Megan Reitz is a quick way to ease stress and ground yourself in the present, a gift from Calm to help you reconnect. Other grounding techniques you could try include: Walking barefoot and feeling the ground beneath your feet Holding a warm or cold object, like an ice cube or a cup of tea Splashing your face with cold water Chewing mint or cinnamon gum Sucking on mints or sour candies Repeating a calming mantra Helpful Links and Further Information 18 grounding techniques to help relieve anxiety What is grounding? Plus, how it can benefit your health How to ground yourself when you feel stressed or anxious Exploring mindfulness and the 5-4-3-2-1 grounding activity Healthline - 30 Grounding Techniques to Quieten Distressing Thoughts Grounding Techniques for Trauma Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

Love to Move is a chair-based, age- and dementia-friendly gymnastics exercise programme developed by the British Gymnastics Foundation. Research published in 2016 based on the original Japanese programme concluded that it significantly improved walking speed. The UK-based programme has also been shown to: improve cognitive function help reduce depression in participants improve balance and improve the ability to undertake activities for daily living Why Gymnastics? The programme achieves this by carefully integrating gymnastic foundation skills, cognitive stimulation, and social interaction activities, all performed to music. The movements used during Love to Move exercises help to develop coordination, balance, core strength and flexibility. They can also enable new brain pathways to develop as well as stimulate old, undamaged but dormant brain cells to start working again, so great for neurological conditions and those with difficulty in producing co-ordinated movement. It has a proven record of enabling a higher level of functioning including fall prevention and the ability to perform tasks like dressing, standing and moving more freely. The Love To Move Programme The entire programme consists of the following key elements/sections: warm-up pulse raiser alphabet activity fine motor skills clapping rhythms spoken rhymes strengthening bilateral Asymmetrical patterns (fun co-ordination!) movement through visualisation & cognition games partner work social songs a group finale and cool down Gymnastics and Music The use of music is a big part of the Love to Move programme. Music can stir emotions in people of all ages, lifting people's spirits and bringing a fun atmosphere to a class. Now we are bringing Love to Move to Mobilates! A unique opportunity to try something a bit different. Join us on the 27th March at 4 pm for a taster session giving you a full flavour of the programme. If you are already booked into SitFit for this date you don’t need to do anything - just come along with an open mind and a willingness to try something new whilst having some fun with others! If you would like to join us then book into SitFit and you will be signed up automatically. Sit Fit Booking Link Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

Part Three - Top 10 things that help me get through the day while living with a long-term health condition The challenges of daily living (completing simple tasks, staying motivated and protecting mental health) are all part of managing of a chronic condition. This month's blog is geared to help you recognise that we are all in this together - what you're going through is normal, hard work and we following will support this and make the day seem a little easier: 1. Regular medication times Taking a number of medications on time and in the right order can be a lot to remember. Having a routine, pillbox or setting alarms on your phone can help to ensure you take your medication on time but also that you take it as recommended. Read the leaflets that come with all medications to keep yourself safe. Check if it should be with food for example. If you have pituitary insufficiency or Addison’s disease then taking your morning cortisol before you actually need it so it has time to work could make a big impact on your day. Important to take your medication on time gives the key benefits. 2. Good hydration Hydration supports lots of bodily functions. Drinking water first thing in the morning can help you feel and function better throughout the day. When your body has been without fluid all night, morning hydration is really good for your body. Take a glass of water to bed, a water bottle or chilled flask to save you a trip to the kitchen. Here's a link to the NHS guidelines . 3. Healthy food When you have chroic Gpain, eating "healthy" food can feel like a m,assivestruggle. Chronic pain can mean that convenience is preferred over meal prep porchooking from scratch. WSome find that batch cooking on good days and then freezing portions for later can support good nutrition on diffcult days. Aim to "eat the rainbow" by including fruits and vegetables of as many colours as possible for your schedule. Enjoy colourful foods from The British Heart Foundation explains what each rainbow colour does for nutrition in our bodies. 4. Getting good quality sleep The quality of the sleep we get can affect our ability to function day to day. Lack of sleep can negatively impact mood and fatigue levels. Having a good sleep hygiene plan can help... regular bedtimes calming activities a warm drink like herbal tea lavender pillow spray 5. Exercise and movement Exercise is important to everyone and that includes those with disabilities, and long term health conditions. The release of endorphins can improve mood, increase heart health and boost circulation. Physiotherapy may be required and that should be the priority. After that, look for activities or sports that you enjoy. It could be a walk in your local park or an online exercise class. My Living Well offers specific advice on moving with long-term health conditions. Book a free trial with Mobilates here. 6. Self-Care Looking after yourself is the key to helping others. Something as small as massaging your favourite hand cream before bed or using your favourite perfume could be classified as self-care. Treating yourself to a haircut or even painting your nails would work well. Good Housekeeping has fifty ideas to get you started. 7. Get Outside In Nature Being outside in nature has a number of grounding and calming effects. Fresh air and the sounds of nature can help to regulate your nervous system and feel some relief in the day. The outside world has so much to offer — calmness — tranquillity — the ability to reach our senses — to provide an escape. Take time to give yourself a trip outside each day. A few minutes out in the garden or a trek through a nature reserve can deeply impact mental and physical health. Mental Health Charity Mind have some everyday tips for getting out in nature. 8. Relaxation Stress and illness go hand in hand. If your condition is exacerbated by stress, its important to honour yourself with time to unwind wherever possible. How you choose to relax is very individual. Yoga or meditation may be the answer for some, others prefer puzzles, being creative, knitting, paiting or recharging with social time. Relaxation Techniques for Stress Relief explores a variety of options that are easy to implement. 9. Visualisation and Imagination On days when you cannot manage your favourite activity or there is no time taking just a minute to visualise that activity can be just as beneficial. Take a moment and find somewhere quiet. Close your eyes and picture a berautiful scene. You could be climbing a snow-topped mountain, kayacking in a crystal clear lake or in another universe. Imagine yourself where you feel happy and relaxed. Positive Psychology can help guide you through three different types of visualisation. 10. Connect With Others Some people recharge when they have a number of social interactions in a day. Use your friends, family or support network — whether that’s in person, online or over the phone. Technology gives us so many more options to stay connected wiht others when a chronic condition might limit our ability to travel or leave the house. Even switching on the radio or TV can help give some comfort and company. NHS programme Every Mind Matters looks at ways to combat loneliness and staying connected. Always remember you are not alone. In the UK, chronic pain affects a large portion of the adult population, with estimates ranging from 35% to 51%, which translates to approximately 28 million people . Specifically, a significant number, around 8 million, report moderate to severely disabling pain.  Mobilates is here to support you. We have a range of online exercise classes, chats, meet ups and the Mobilates Mob Facebook group. Helpful Links Take Medication at regular times Stay Well Hydrated Eat a healthy diet Get good quality sleep Movement Self-care Nature Relaxation Visualisation Loneliness and Staying Connected Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

Do you have chronic Pain? "Tame The Beast" might be the answer Attending a pain clinic and establishing a pain management plan can be a real life-changing experience. In this blog we'll be looking at different ways of looking at pain and pain management plans. Suzanne's Story This blog is a personal one, after a referral to a Pain Clinic. Unsure what this would entail and that I was being ‘passed on’ and ‘misunderstood’ I did what we usually do these days - googled it! My thoughts changed pretty quickly. It became clear that this could be a real opportunity for change - someone to look at me as me - consider every medical condition I have - focus on what works, and what doesn’t and then tie it all together, creating a holistic approach. What you’ll see here is all the information given to me directly from a Pain Specialist Consultant. If pain is a significant factor for you and you have multiple medical specialities involved in your care, then consult your local GP or another health professional, who will be able to help you put a plan in place. There are also options to create your plan independently if that is preferable. First, we need to understand what pain is, and how and why it occurs. The different ways that it manifests and what is causing it. Tame The Beast "A few years ago, Dave Moen   and Prof. Lorimer Moseley met weekly to plan Dave's PhD in pain. The goal was to find better ways to engage patients and clinicians in modern pain science. Maybe it was the caffeine, but soon enough the sights shifted and conversation flowed around building a simple and freely available education resouurce about pain. Starting with the incredible knowledge of the human pain system, we wanted to communicate hope and give people evidence-based direction to guide their recovery from pain." Source: https://www.tamethebeast.org/about Did you know there are pain scientists? Tame The Beast looks at pain in a very different way. Due to the complexity of this subject matter and the difficult processes involved: In part one we specifically look at: The Tame The Beast pain theory. How to know if my pain system is being protective: How to re-train my pain system to be less protective and how to know if I’m safe to move? In part two: We revisit the Tame The Beast Theory and look at the final two steps to a successful pain management plan: Working with health professionals The Road to Recovery and Getting Moving. Tame The Beast introduces their theory about pain in two different styles, via a YouTube story or a written transcript. They highlight that Pain Scientists exist. This theory was written and produced by Professor Lorimer Moseley and Dave Moen. One of the first things to focus on is how they are now thinking about pain and its causes in a different way. Once you have the basics grasped they talk about the goal being to retrain your pain system, enabling it to provide protection when it is needed but not when we don’t, which is discussed through some questions. You are encouraged to discuss this with a health professional/consider it on your own. They are: How do I know if my pain system is being protective? How can I re-train my pain system to be less protective How do I know if I’m safe to move? How do I know if my health professional understands modern pain science? How do we begin the road to recovery? There are some useful answers to these questions to help us on the pathway. Understanding is key before anything else and that alone is helpful as the first step to conquering the beast (pain). The theory encourages patients to realise that; ‘… pain is much more complex than a signal from damaged tissues is one of the best things you can do to start your journey to recovery – many people say that their pain began to reduce as soon as they understood it better. ( Tame The Beast - Understanding ) How Do I Know if my pain system is being protective? Ensuring health professionals have ‘checked you out’ for anything serious before starting is essential. If you already have a diagnosis of a condition(s) then there is a warning that this will make things harder. There are some small things to look out for that include becoming more sensitive to pain. You could become more sensitive to things like noise and your surroundings or the pain may spread. It may affect your movements, thoughts and feelings. One of the key things to note is that Pain scientists understand how this works and it makes terrific sense. They report that: ‘Many people don’t understand it (pain)–even some health professionals. One thing that we know absolutely for certain, 100%, is that an overprotective pain system is NOT a sign you have a weak personality or a weak mind; it does NOT mean you are going crazy and it does NOT mean your injury is getting worse or your body is falling apart. ( Tame The Beast - Understanding ) How can I re-train my pain system to be less protective? In very simple terms these are the top three to look at; 1. ‘Start by developing an accurate understanding of your pain system and how it can become overly protective. This overly responsive pain system results from the amazing ability of our body systems to adapt. 2. Knowledge is power and knowing that your system is overprotective, and understanding that pain is affected by thoughts, feelings, moods, sayings – the list of things is just way too long – pain can be turned up by anything that can trigger a protection response and turned down by anything that makes your system feel safe. 3. Being creative in managing your journey is likely to help. Our brains love to get new information or to be reminded of situations or activities that are full of safety messages. ( Tame The Beast - Understanding ) This section aims to not avoid challenges or new situations but to think about how we can better cope with them and begin to make some positive steps. But this isn’t a quick fix. (although it would be great if it could be) especially if you’ve been experiencing chronic pain for a significant amount of time. Getting people that are surrounding you to understand your journey could be significant. Without realising it they could be the cause. They may think you look well when you feel far from it. Then the pain system kicks into overdrive again to protect. You need to be aware that this in the main looks at one problem. In the main points to an ‘injury’ where pain exists for 3 months or more. However, it is precious for those with chronic pain throughout the body. What we know is that this may not be the only condition that you have. Bringing in medical and mental health issues for example will make this more challenging. A balance will be required. A Pain Clinic may be required so a multidisciplinary approach can be delivered. How Do I Know if I’m Safe to Move? This is proposed to be the most important strand. In most cases, you should be working with whichever health professionals are involved in your care. (Unless you have a simple muscle sprain for example!) They should be able to help you move in the right way, for the right amount of time and when this should happen, as this quote explains; ‘Knowing and believing that you are safe needs repetition and practice, and 'stacking up the wins', as you teach your overprotective pain system that it does not need to be so protective’. ( Tame The Beast - Understanding ) Summary This took a considerable amount of time to work through and is highly complex. Don’t be afraid to read, re-read, watch and read again. That is exactly why this has been written. This is a long-term approach, and guidance may be required. Either medical help or support from family and/or friends can help. Getting them to understand pain can also help. They might not realise it, but the way other people understand your pain can affect your pain. The Mobilates blogs are very real to us. We are on the same journey and it’s tough, slow and frustrating. Most of the scenarios we face ourselves everyday. Everyone's journey is different and we like to have this passionate perseverance to help others as much as possible. More helpful links Tame The Beast Tame The Beast - Understanding Pain Live Well With Pain Pain Tool Kit - Home Page Pain Tool Kit - Patient Resources Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com

Chronic illnesses and burnout Having a long-term health condition puts enormous pressure on our shoulders. It’s easy to become overwhelmed — by the responsibilities of managing appointments, taking the appropriate medications and financial stressors while juggling life responsibilities when also experiencing physical pain and discomfort. Things that can help accept a long-term diagnosis: Thinking about what we can do to help accept and manage our conditions within reasonable expectations of ourselves can make everyday life that little bit easier to manage. Recognising the signs of burnout: More intense symptoms or additional ones — the need for additional medication — even the inability to perform simple tasks and activities that we normally participate in can all be signs to look out for. Seven Top Tips To Help Burnout Accept any limitations placed on you by your condition — learn your limits and how to listen to your body. Knowledge is power — learn as much as you can about your conditions and log how you are affected personally. Everyone is different and you need to know your symptoms and stressors. Be assertive — Saying no when you need to even if you want to say yes is powerful too! Try to explain why you are saying no so people understand why. Choose to lead a healthy lifestyle — eating, sleeping, moving well and practising self-care will all support all-around physical and mental health. Adopting the 3 good things mantra — every day think of three good things that have happened or that you are grateful for. They can be small and they soon add up. Realise you are more than just an illness — your illness doesn’t define you. You are still the person you always have been and deserve the right to be treated like a human being. You should still have the opportunity to do the things that you want to and enjoy. Be part of a community (Like The Mob!) — communicating with others ‘who get you’ can help. Whether it's a FaceBook group, online support group or face-to-face group, all can offer some help and support especially when you are first diagnosed or going through a tough time. Burnout happens to all of us Most people will experience burnout at some point in their lives. Those with a long-term health condition are much more vulnerable. Ensure you are well supported and explain to friends and family what your limitations are and how you manage these. Their support will help you stay on track and enable them to identify your warning signs, giving you extra protection and comfort through the difficult days. Other resources Five ways to manage burnout What is chronic Illness Burnout Five tips for chronic illness burnout How to beat chronic illness burnout Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. Book your free trial today! www.mobilates.com

The Chronic Pain Associated with Ehlers-Danlos Syndrome Imagine for a moment: lying in bed, knowing that any second now you will need to get up to walk to the loo and you are dreading it, as any movement will feel like wading through quicksand infused with jellyfish tentacles. Even turning over in bed, you run the risk of leaving a shoulder behind or slipping a kneecap out of place. Knowing your family are downstairs and you’re up there alone with only the TV and your phone for company. You feel such longing and pressure to join them but your energy will be zapped just from that trip to the loo… You may not need to imagine it as this might be you right now or in a not-too-distant memory. "Just exercise & lose weight" So, you see a doctor and they say in frustration “you just need to exercise and lose weight” as they have no further options for you other than more antidepressants and painkillers. So you push yourself to find a Pilates class – as that’s what your consultant told you to do. And you arrive having completed the health forms, maybe you lied and kept things to a minimum as your list of ailments could write a book, and you are greeted by an instructor who looks a bit fearful and says “just do what you can do”. You try some moves, you cry as the pain is so bad, you may even injure yourself and then you drag yourself home, back to bed – suffering, embarrassed and dejected and feeling like you never want to move again. How to exercise safely with chrponic pain I’m sure you are relating to this right now, or from past experiences. Getting yourself moving is so tough. Finding exercise that can genuinely help you and not set you back with injuries or pain and fatigue flares can feel impossible. I’m here to say that I have been there – where you are, or may have been – spending 22 hours of the day in bed . Only getting up when my mum came home from work to make me lunch. If I was lucky, some days I’d have enough energy to be driven to the beach and sit on a bench to get some sea air. And this was in my 20s when I should have been out working, having fun and being with friends. Now, amazingly, I work in the fitness industry. I trained to become a Pilates Instructor and set up Mobilates so that I could help other people like me access exercise in a safe and adapted way. Pilates helped me so much, but I was the one crying my way through a beginner’s course. Even getting up the stairs to the studio meant that I needed to lie down until the dizziness and nausea eased. I dislocated my shoulder when I moved on to Lite Pilates and completely freaked out the instructor who was already a bit wary of me! But – with perseverance, a really knowledgeable and supportive Pilates instructor and time – I managed to find a way to build strength in my muscles so my joints were better supported. I increased my exercise tolerance so that I could walk further and stay upright longer, my pain decreased massively and I started to live life more fully. My mission to provide accessible Pilates classes I knew that I could use my experiences to teach accessible Pilates and plan classes that would help people with mobility issues (and chronic illnesses like EDS, MS, arthritis, fibromyalgia etc with their functional movement, reducing pain and increasing energy). I hoped that if these classes were taught by people with lived experience of pain and disability, people would feel reassured and even inspired to get moving. I wanted people to feel like they could get their lives back and start thriving instead of surviving. Now I teach multiple classes a day while running a business and home. I never even imagined this was possible, and somehow, despite my long list of diagnoses and issues, it is my reality. From my own experiences and those of our marvellous Mobilates members, we have put some tips together to help you get started safely with movement. Start where you feel safe and supported This could mean many different things to each of us. It could be from the comfort of your bed or chair or finding a class taught by understanding instructors online or even in person. Whatever your starting point is, even if it is pointing and flexing your feet while lying down or popping into an online class for the first 10 minutes, this is 100% progress from not doing anything at all. “Being assured that you can stop and rest at any time and still feel that you have had a great class was key for me when I started. Feeling able to ask questions and check on things during class with no judgement or embarrassment was great also. The fact that Leanne adapts her classes to take into account everyone’s needs is something I have not experienced before. Mobilates is unique in its approach and supports everyone as individuals.” (Mobilates Member Michelle)   Take it gently When you decide to get started, it can be so tempting to really go for it and push yourself too hard. A gentle and slow approach to whatever you choose to do will benefit you so much more in the long term. Taking breaks, leaving early, dipping your toe in is such an achievement. You may find you are able to do the class fine at the time but if you push yourself too hard, you may take longer to recover, and it could set you back. “When getting started, which is sometimes over and over again after a flare, I try to remind myself not to go ‘too hard’ and follow Leanne’s guidance – “Just because you can, doesn’t mean you should”” (Mobilates Member Rachel)   Find the right activity for you I bang on about Pilates all the time because that is usually what physios and consultants recommend but it needs to be something you will enjoy. You might prefer swimming or horse riding, or even skiing. Whatever it is (hopefully something that will bring you joy so it is sustainable), please make sure you are supported by knowledgeable instructors who know how to keep you safe. They don’t have to be experts in working with people with EDS, but a bit of knowledge on how not to hyperextend would be a good start. And if they even whisper the words “no pain, no gain” please walk away! The right instructor will: Give you a private initial consultation Listen to YOUR challenges and goals Provide reassurance they can adapt for you Be honest about their experience and limitations Keep an eye on you and remind you to watch your range of movement Give you the space you need to rest, adapt or leave early “Mobilates is the ONLY exercise I have continued doing consistently for more than a few months. Online classes are so convenient, removing the time and effort of travel, as well as much of the self-consciousness of physically being in a space with others. But because of Leanne’s care to ensure she can see us all properly, together with the community aspect, I still get the benefits of an in-person class, i.e. the camaraderie of the Mob and the safety of an attentive teacher (particularly important when I have been recovering from injuries).” - Mobilates Member Sophie Consider using braces and props We can at times feel a bit like Robocop with all the knee, shoulder, wrist and finger supports, and I understand turning up to a fitness class wearing them can feel a bit daunting. Being scared and tense may cause you to move stiffly and hold your breath which can cause injury. If you feel like you have an unstable joint that needs supporting, it won’t hurt to use it until you feel more stable. Ask in the online EDS UK support groups for recommendations for braces that could help. You can also ask the instructor if any props might support. We often use soft balls and bands to help you feel a movement more and let you know when to stop, cushions and extra thick mats for comfort, and belts to enable lifting of legs. You may find all-in-one compression gear can enable you to get in and out of a pool safely, or using a chair in a class can help you stay upright for longer.   Watch your range of motion “Just because you can doesn’t mean you should”. We say this a lot in Mobilates classes! Just because you can bend your knees and elbows backwards at the same time as resting your head on your shoulder, doesn’t mean it’s not going to cause issues if repeated. These are a couple of tips to consider: Neck – use your hand or a soft small Pilates ball to remind you not to hang it down near your shoulder Arms – soften your elbows, try not to let shoulders hang out at the socket, keep your hands where you can see them Knees – keep them soft but not too bent and do sit when needed Back – try not to hunch, or hang back in your pelvis. Just because you can touch the back of your head to the back of your heels doesn’t mean it is safe for your spine Hips – when standing on one leg, avoiding dropping into or hitching up your supporting hip Keep your moves slow, small and mindful, so you are less likely to hyperextend and more likely to maintain a range of movement that you can control If you would like to start moving safely, Mobilates would be delighted to support you with a free consultation and trial for live, online, accessible classes. We have understanding instructors and beautifully supportive members who we call Da Mob ready to welcome you with open arms. Find out more at www.mobilates.com Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions. www.mobilates.com