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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Lymphoedema & Self Care

Author: Gaynor Leech, Founder of L-W-O

Last Wednesday I teased on support group ‘Watch this space’

As you might guess I have an absolute passion for raising awareness and supporting those of us that live with lymphoedema.  It has been a steep learning curve and every day I learn something new from our members, followers and supporters.  I don’t always get things right and I have learnt that I can’t please everyone. 

My effort to Get Moving

My hubby bless him, bought me a Fitbit for Christmas to help me better manage my health.  This means I get nine reminders from 8 am – 5 pm to move around, not just be stuck in front of a screen, it reminds me to keep my water levels up, has a great feature to practice deep breathing which helps me relax.  Very good for my lymphoedema, but a struggle with my osteoarthritis trying to maintain a certain amount of steps. It has confirmed that I do only sleep on average six hours a night. It’s not perfect and not 100% accurate but as a guideline it has made a great difference to the way I look after myself. On our social media platforms we use the #getmoving.

Normally I get very bored with gadgets, but we are now mid-February and we are still connected.   What my Fitbit has also done, and I am thrilled about it has shown me how much my heart rate slows down when I am writing even when I am writing out of anger and frustration, it maintains a steady rate and my BPM is a lot lower than when I am doing routine household chores.  Which is why I am such an advocate in you having something you can do for yourself that, you enjoy, whether you have a hobby, knit, draw, paint do crafts, read a book it is all good for our physical well-being and our mental well-being. I have always found writing cathartic.

The time it takes

Running L-W-O could take up to 70 hours a week and I have now got this down to 30 hours a week.  While my phone for support group is on from 9 am – 10 pm every day, I have got so much better at not looking at my phone when I am out and about.   The laptop goes off at 2 pm so my writing and poster making has to be finished by then or left until another day.  As my journey has evolved several projects, I worked on in 2018 centred around self-care and I began to realise more than ever that on a personal level I also had a responsibility to myself to take care of me!  This is why you will often see across our social media the hashtag;

Self-care starts with you

More than ever I believe that we can do a lot for ourselves to improve our daily living.  It isn’t by any means easy and we all need support from each other and the wider lymphoedema community.   Groups like L-W-O are at ground level we continue to advocate for more knowledge, support, treatment and we want lymphoedema to be recognised.  This year we will be promoting Lymphoedema Awareness Week (LAW) in the UK.

Lymphoedema Awareness Week

3rd-9th March 2019

 

During my journey I have met some wonderful people often introducing them to lymphoedema for the first time. 

The community supporters I have met along the way has been truly amazing people who, often live with a long-term condition of their own, they understand what it was like to have a condition whether it be a physical or a mental health problem that nobody has heard of.   The daily challenge this presents is so underestimated.  In Coventry there are 99,000 people living with a long-term condition that we know of.  

Image provided by the National Lymphoedema Partnership (NLP)

I also began to realise how easy it was to incorporate self-care into our L-W-O journey.  From August last year more than ever I started to add visual postings with much more information on how the self-care tips I was learning could be used by all our members to help self-care their lymphoedema.  There are times in life we all need a little reminder and if it helps one person make a small lifestyle change then it is more than worth the effort.

To that end we celebrated self-care week in September 2018 and this year we will be celebrating self-care week 2019:

Image provided by: www.selfcareforum.org/

 

Much of the work on Self-Care would not have been possible without the encouragement, help, support and patience that Grapevine Coventry & Warwickshire, Mel Smith, Naomi Brook, Feel Good Ambassadors and Collective leaders invested in me. Because of this I am thrilled to have been added to the Self-Care Champions wall on the self-care forum take a look at you will find me at the bottom of the page:  http://www.selfcareforum.org/about-us/self-care-champions

 

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