Our approach to care:

 

At Dizzy hEDS & Co., we are dedicated to supporting people living with complex and chronic health conditions to better understand their bodies, manage their symptoms and navigate daily life in a way that works for them.

 

We recognise that living with an invisible illness can bring unique and often misunderstood challenges. Your experiences, symptoms and needs are individual, and we believe your care should reflect this.

 

Our approach is holistic, collaborative and personalised. We aim to create a space where you feel heard, understood, respected and valued, while working alongside you and your broader healthcare team to support your individual needs, priorities and goals.

 

You are the expert in your own experience. Our role is to help you make sense of your symptoms, explore practical management strategies and develop an approach to daily life that is realistic, sustainable and meaningful to you. We will also work in with your current team and connect you with other trusted healthcare professionals if needed.

 

How we work:

 

Everyone's health journey is different. The conditions we help you navigate affect people in very different ways, and symptoms and capacity may fluctuate from day to day. For this reason, we do not follow a rigid, one-size-fits-all treatment plan. Instead, each session is tailored to what is most relevant and helpful for you at that point in your journey. Together, we will explore practical strategies that may support symptom management, energy conservation, daily functioning and participation in activities that matter to you.

 

Depending on your needs, sessions may cover the following areas.

 

1. Energy conservation and pacing

Pacing is an important part of managing many complex chronic conditions and is known as the foundation and cornerstone to managing symptoms. It involves learning how to balance activity and rest, recognise your current capacity and adjust your routine in response to your symptoms.

 

We may work together to:

• Develop comprehensive personalised pacing strategies: Understanding the importance of pacing as a foundation and implementing your individualised pacing strategies physically, mentally, socially, environmentally and emotionally, to help you manage your available energy.

• Understand your capacity and triggers: Identify your unique symptom triggers, energy patterns and daily capacity fluctuations, including factors that may contribute to symptom exacerbation.

• Navigate flare-ups and setbacks: Develop proactive strategies where possible, alongside practical recovery plans to help you confidently navigate setbacks and reduce symptom severity.

• Review and adapt over time: Recognise that capacity can fluctuate and adjust your strategies as your needs and circumstances change.

 

2. Biofeedback and symptom tracking

Understanding your individual patterns can help inform decisions about daily activities, rest and symptom management. We can explore different ways of monitoring your health without creating unnecessary pressure or adding to your workload.

 

We may discuss:

• Finding a suitable tracking approach: Explore options ranging from activity and symptom diaries to wearable biofeedback devices, such as Garmin or Apple Watch, and chest-strap heart rate monitors.

• Interpreting your data: Utilising metrics like Heart Rate Pacing and Heart Rate Variability (HRV), giving us insights to identify clear patterns, establish safe limits, and promote more stable days.

• Developing practical symptom management strategies: Implementation of practical daily proactive symptom management for dysautonomia, pain and other symptoms, such as compression garments, hydration, electrolytes, gentle movement where appropriate, postural check-ins, meal timing, physical counter-manoeuvres, ergonomic adjustments and supportive equipment.

 

We will consider which strategies are appropriate for you, taking into account your symptoms, preferences, existing medical advice and capacity.

 

3. Nervous system regulation and sleep

Rest, regulation and sleep can play an important role in managing chronic health conditions. We recognise that strategies that work well for one person may not suit another, particularly when sensory needs, pain, fatigue or autonomic symptoms are involved.

 

We may work together to:

• Explore rest and regulation strategies: Identify practical techniques that suit your interests, sensory preferences and specific health needs.

• Support sleep: Explore factors contributing to sleep difficulties and discuss strategies that may help improve sleep quality and restorative rest.

• Build flexibility into your routine: Find ways to incorporate rest and regulation into daily life without adding unnecessary demands.

 

4. Meaningful activities and daily living

Managing a chronic condition is not just about symptoms. It is also about finding ways to participate in the activities, relationships and responsibilities that make life meaningful.

 

We may focus on:

• Collaborative goal setting: Break larger goals into manageable steps that reflect your priorities, current capacity and personal circumstances.

• Work and study: Explore sustainable approaches to work or study, including gradual adjustments, reasonable accommodations and communication with employers or educational providers where appropriate and with your consent.

• Daily living: Break down household tasks, childcare and other everyday responsibilities into more manageable activities and develop routines that better reflect your available energy.

• Meaningful participation: Explore ways to maintain or gradually reintroduce enjoyable activities while taking your symptoms and individual limits into account.

 

5. Movement and physical conditioning

Movement and exercise are not always appropriate at every stage of your health journey. Our approach takes into account your current symptoms, capacity, condition and individual response to activity.

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When appropriate, we may work together to:

• Explore gentle, functional movement that supports your everyday needs.

• Develop an individualised approach to physical activity, exercise or sport.

• Identify how to adjust activities in response to symptoms and changes in capacity.

• Consider how to approach progression cautiously, with particular attention to post-exertional malaise (PEM) and symptom exacerbation.

 

There is no expectation that you need to increase your activity at every appointment. Our focus is on understanding what your body can currently tolerate and determining what support is most appropriate for you.