A few months ago I attended a webinar presented by Sarah Jouanny. Sarah Jouanny works at Essity as a Global Communications Specialist and lives with primary lymphoedema. She is a passionate lymphoedema awareness advocate and works on a global level to create scale in her mission to break barriers for people with similar conditions – to help them find knowledge and innovations that support them to be able to live their best lives with lymphoedema. Sarah is based in Germany so the webinar was a recorded presentation. It was titled #HealthyLymphoedema – The Mantra for 2022 and Beyond. Great title for a webinar and the big take home message was “Live well with Lymphoedema”. I love it!! So of course writing a blog post on the topic was added to my “to do list”. As overdue as it is … here it is.
By the way, for anyone who hasn’t heard of a webinar, it’s a seminar held on the internet. It’s usually live but can sometimes have a recorded presentation, particularly if the presenter is in a different time zone. The great thing about webinars is you can attend from the comfort of your own home and in the comfort of your favourite pjs and dressing gown if you like! ;p No need to go out in the cold and spend money on petrol and parking. Webinars are often held at lunchtime or dinner time so being organised to have food you can eat with one hand, leaving one hand to take notes is preferable BUT if you can’t take notes, the organiser often sends a link to a recording so you can watch it again later. Webinars are usually very reasonably priced too – much cheaper than attending a seminar in person. There is no downside to webinars as far as I can see. Now, back on topic …
Goal – To have the client feeling confident and be in the lead, owning their condition so they can live with healthy lymphoedema
Living well with healthy lymphoedema. It’s a nice message and a really good goal for people living with lymphoedema but what does it mean and how do we get there? The answer to these questions will be different for everyone because everyone is different, their medical history, medications, mobility, exercise, home and family life, social life, work and finances, their goals and expectations, and everyone’s lymphoedema is different too.
To feel confident is to understand your condition. It means you need to become an expert in your lymphoedema. Know what to do to manage it well. Develop daily routines (morning and night routines). These will include looking at and feeling your oedematous body part and noticing changes (colour, temperature, tightness, size, skin), check also for insect bites and cuts. Bathing, skin care, breathing, exercise, massage and compression. You may also have a hand held laser unit for your personal use at home. Well managed lymphoedema doesn’t happen by accident or luck, it happens when you make it happen. But you don’t have to do it alone. Don’t be afraid to ask for help when you need it.
Find your support team. Yes, I said “team”. It’s great to have a great therapist but you will find that, as with no two lymphoedemas being alike, no two therapists are alike. We all have our own strengths and specialties and tools (be it lasers, lymph taping, cupping, flossing, skin care, exercise, compression garments and bandaging etc), not to mention different styles of treatment depending on where you trained. Having a team also gives you a back up if you’re having trouble getting an appointment when you need one and gives you access to another pair of hands and another brain. And if those multiple brains are willing to communicate and work together as a team with you at the centre … imagine what can be achieved!
Compression garments – custom made is best – obviously! Well, yes, provided the measurements are taken and order placed properly.
In South Australia we now have a Lymphoedema Compression Garments Subsidy Scheme which enables eligible South Australians to be provided with up to two compression garments for each affected body part, free of charge. Read more about the Lymphoedema Compression Garments Subsidy Scheme on the SA Health website here
Have a clear plan – put into place a strategic plan involving you and your team of health professional(s) and visualise the bigger picture.
Define the approach and treatment together. Discuss treatment options with your therapist(s). Work out what works best for you.
Put some timings in and milestones to work towards. By taking time to assess progress periodically helps to identify what works best and what doesn’t so changes to treatment can be made. It also is an opportunity to look back to where you have come from and celebrate progress and wins.
Visually build a roadmap of where you need to get to. This isn’t just about limb size. It’s about what day to day life looks like when you have reached your goal.
Get clear guidance on how to identify problems. This is really important. Set backs can be disastrous for progress so this can include identifying risk factors as well as problems.
Have techniques to help make decisions and/or take action if you encounter a change in your condition.
Spend time with your therapist(s) to build an individualised plan to enable you to move more quickly towards your independent self management.
Ask your therapist(s) to support you to be a better advocate for your own health.
Remember … You are in the driver’s seat and you have the potential to live with a healthy lymphoedema.