Living with conditions like Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers-Danlos Syndrome (EDS) or hypermobility disorder can bring with it unique challenges. These conditions often impact mobility, stability, energy level and endurance, and overall daily functioning. An empowering approach to navigating these challenges and finding greater ease is to strategically use adaptive equipment to help you do more of what matters to you in your daily life, or to get the “need to do” things done with less sweat and struggle…
I know, I’ve heard and seen the eye roll before when it comes to adaptive equipment. It's not a sexy strategy and it might trigger a range of emotions when considering using these tools… embarrassment? Disgust? A swell of pride and resistance to needing to make this adaptation? Maybe you’ve been given a flier at a doctor’s visit or had a shower chair recommended to you in passing; however, you might not have had these tools presented and framed in an empowering way. And that is my goal in this article!
These tools are here to support you. When used strategically and thoughtfully, and when the space is held for whatever resistance or emotional response arises, I have seen adaptive equipment be a game changer for my clients with POTS and EDS, particularly when they are struggling significantly with chronic fatigue.
I remember one client I had in particular who was disabled and nearly bedbound by a combination of POTS, EDS, and MCAS. Her doctor had recommended a shower chair but had never taken the time to have a conversation with her about how that might benefit her. She viewed the use of adaptive equipment as a symbol of all the things she couldn’t do that used to be so easy. In one of our sessions, we delved into her energy envelope and examined the activities where she was overexerting and pushing her body beyond its current limits. In this exploration, the shower chair was assessed as a tool that she could choose to use to help her do something important to her (take care of her physical body) in a way that was more accessible and less taxing. By taking the time and space to explore her current needs, limits, and supports, her perspective on using the shower chair shifted. She came to see it as a symbol of what she could do rather than what she could not do, and she realized how adapting that one activity helped her body have more energy and resources to put towards other things in her life.
In this article, I hope to help you see adaptive equipment as something that can empower you. We'll explore the significance of adaptive tools, their specific benefits for individuals with POTS/EDS, and the role of occupational therapy in recommending and utilizing these aids for an improved quality of life.
Understanding Adaptive Equipment
Adaptive equipment refers to a range of tools and devices designed to assist individuals in performing daily activities. These aids are specifically crafted to accommodate physical limitations by providing increased support and stability, and they can also enhance independence and functioning by helping with energy conservation. From simple tools to complex apparatus and more advanced technology, adaptive equipment aims to bridge the gap between limitations and daily tasks, making life more manageable and enhancing overall well-being.
Benefits of Adaptive Equipment for POTS/EDS
For individuals moving through life with POTS or EDS, adaptive equipment can play a crucial role in mitigating the challenges these conditions present and supporting greater ease in daily living. Adaptive equipment can support you in:
Enhancing Stability: Conditions like EDS often cause joint hypermobility, leading to instability, and individuals with POTS can experience syncope (fainting) or presyncope Tools such as canes, walkers, or supportive braces can offer stability, reduce the risk of falls, and support increased activity endurance around your home or in the community.
Conserving Energy: Seemingly simple tasks can often be energy-draining. Adaptive tools like long-handled reachers, button hooks, adapted utensils or electric can openers reduce the energy spent on daily activities. By conserving energy in some of these daily activities, you might have more energy to dedicate to other activities in your life that are really important to you.
Minimizing strain and physical demand: Specialized seating options, ergonomic furniture, or adaptive kitchen tools alleviate physical strain on the body, making tasks more manageable and comfortable.
Types of Adaptive Equipment for POTS/EDS
Mobility Aids: Canes, walkers, or crutches to enhance stability and prevent falls. I have seen mobility aids make a huge difference for individuals disabled by POTS or another energy limiting condition. It's important to remember that different mobility aids could be needed on different days depending on how your symptoms fluctuate.
Supportive Braces and Orthotics: These aid in stabilizing joints prone to hypermobility and reducing the risk of dislocations or subluxations. Sometimes people wonder if using supportive braces will reduce strength because you won’t be actively building the strength to stabilize. As an OT, I am a big advocate for using supportive braces to support functioning in addition to safely building strength in weaker muscle groups.
Ergonomic Furniture: Adjustable chairs, desks, and specialized cushions promote better posture and reduce strain on the body. We spend so many hours sitting in cars, at our desks, and just in general, so it is definitely helpful to find ways to support the body in a neutral sitting position to reduce pain, fatigue, and more.
Assistive Devices: Reachers, dressing aids (those compression socks can be exhausting to get on!), shower chairs, and adapted utensils can help you perform daily tasks with greater independence and ease. When you are living with chronic fatigue, using assistive devices can help you to more easily complete routine day-to-day tasks so you can better conserve your energy for what is important to you.
The Role of Occupational Therapy in Adaptive Equipment
Occupational therapy is pivotal in recommending and teaching the effective use of adaptive equipment. Occupational therapists assess an individual's specific needs and challenges, consider what is most important to you, and offer tailored solutions and training in the usage of these aids. Additionally OT provides a space for you to learn energy conservation and activity pacing strategies, implement proper body mechanics, and identify and implement other strategies to optimize daily living.
The benefits of occupational therapy when it comes to adaptive equipment for POTS or EDS are:
Customized Solutions: Occupational therapists evaluate an individual's needs and recommend personalized adaptive equipment to support your body in functioning at its best.
Training and Education: Occupational therapists offer tailored education on how adaptive equipment can help you overcome and manage troubling symptoms and offer training sessions to ensure proper usage, maximizing the potential of the equipment.
Improving Independence: Occupational therapists empower individuals by recommending adaptive equipment and other self-management strategies to enhance your independence in daily tasks and improve your quality of life.
So, in conclusion, adaptive equipment might not be the sexiest strategy at first glance, but in the humble opinion of this OT, there is A LOT to be gained by giving these tools a chance. Using adaptive equipment, particularly when it is paired with guidance and training from an occupational therapist, can significantly improve your daily life if you are living with POTS and/or EDS.
My practice specializes in supporting people with POTS, MCAS, EDS and other chronic conditions to implement actionable daily living strategies to minimize symptoms and improve quality of life. Schedule a free consultation call if you have any questions about how adaptive equipment and/or occupational therapy might support you.
