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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

New Year - New Challenges 2021

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

 

 

 

 

With Christmas and New Year firmly behind us we start looking at the challenges that 2021 has for us.  During the break I managed to keep the laptop off 99% of the time only using it for some personal business and my mobile phone was also noticeably quiet and I felt that I had a break over the festive season.

Anxiety is high amongst most people I talk to and people are extremely weary of mixed messages and the general situation not only in the UK but across the world.  Support groups generally not just L-W-O’s are quieter than usual even allowing for the festive break there is little interaction on lymphoedema but the messages we post on mindfulness, anxiety and not getting angry or beating yourself up, have had a bigger response.  Therefore, mental health issues have clearly become a big issue.

 

Time Observations

The first has become ‘time’, not because we do not have enough hours in the day, but because the days have rolled into one, there used to be a clear distinction between morning/afternoon/evening and Monday to Friday then weekends, now everything appears to roll into one.  The second observation is that daytime seems to be very dark.  I am fortunate to live in a house with nice big windows that let in a lot of natural light, but I cannot remember a time in over 30 years that the lights have been on some mornings until 10 o’clock and often put on at 3 o’clock in the afternoon.  Is this just me?

 

Echo Dot

My youngest son bought me an Echo Dot for Christmas and Alexa has become an especially useful tool, great for shopping lists, reminding me to close windows, minor tasks around the house especially for hubby, as well as instant music.  We have also had a few giggles such as she interpreted adding 'oxo cubes' to the shopping list as “absolutely cute” and the Grandchildren think it is funny to tell her to make rude noises 20- or 30-times which Alexa seems to do with gusto!

 

Reorganising & Adapting

I started back on the 4th of January with nothing in my diary, slightly earlier than past years and by the 8th of January my diary filled rapidly with courses, webinars and zoom meetings including more invitations to write.  With so many people now using the internet my normally reliable broadband let me down and, on several occasions, it became impossible to do anything and I did miss two important meetings and home-schooling was impossible.  This has meant, I have had to upgrade my package, which has added an extra cost which I certainly do not need.  L-W-O Community will be grateful any donations so please support us:

Although running L-W-O can be a fulltime job – please remember I do not get paid, I am a volunteer the main work is done on Monday, Wednesdays & Fridays which coincides with my hubby going to golf and of course he cannot do that in this lockdown.  Monday and Wednesday, we are now home-schooling and entertaining our two youngest Grandchildren as both their parents are keyworkers with their Mummy having to teach from home.  I am still adapting to reorganising my time as family always comes first.

 

Our Changing role as Grandparents

How things have changed from 20 years ago when I used to have my older Grandchildren who are now in their 20’s.  Then it was gardening, painting, crafts, outdoor play, and no TV which meant as Grandparents we taught through love and play. Fast forward to 2021 and we are Teams home-schooling, little outdoor play because of the weather and far too much TV.  Coco Melon and Frozen are on TV permanently, I think hubby is quietly enjoying learning all the children’s songs because he was always at work when our children and older grandchildren were small, and 40 years ago daytime TV was not a big thing.  We are far more tired now and the realisation we cannot do what we did 20 years ago has hit home hard, thank goodness that Hubby is retired to share the work.  The upside is that we are lucky enough to spend precious time with two of our Grandchildren and neither of us have a problem sleeping at night!

 

What does 2021 hold for L-W-O Community?

There is such a lot going on in the background with some exciting discussions.  I will be writing more this year and more articles will be published either on websites or in Newsletters of other organisations.  Discussions around LAW which is (Lymphoedema Awareness Week) and WLD (World Lymphoedema Day) are ongoing and I am hoping that this will lead to further working partnerships, please save the dates:

1st – 6th March - LAW - (Lymphoedema Awareness Week)

6th March – WLD - (World Lymphoedema Day)

I was excited to see L-W-O being added to the VASCERN app which is downloadable as one of 13 resources in the UK for lymphoedema and lymphatic malformations this was facilitated by Pernille Henriksen and our video promoting the app was designed by Mary Fickling.  This is an amazing step forward for a patient support group like L-W-O.  For those that do not know:

VASCERN is the European Reference Network on Rare Multi-systemic Vascular Diseases, is dedicated to gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare Vascular diseases (an estimated 1.3 million concerned). This includes arterial disease (affecting the aorta to small arteries), arteriovenous anomalies, venous malformations, and lymphatic disease.”

 

The above video designed by Mary Fickling

 

I am looking forward to attending the VASCERN open evening on the 29th of January 2021.

My understanding is that we are being added to another app as a source of information for patients and I will promote when I have the links.  I have also produced the following video for children living with lymphoedema who may develop cellulitis.

 

 

Training/Courses

Training and courses will continue this year and the first one I took part in was on Friday 15th January, I attended my second CEmPaC webinar the subject “Core Skills to Support Self-Management”.   The importance of webinars like these is that we move away from the idea that the clinician knows what is best for us as patients and we take some responsibility for our care.  That does not mean we disregard what our clinicians are telling us.  As patients we want to be treated as an equal and with respect, we also want to have a say in our treatment and to be told about other options available.  The interesting part of this webinar was how close it was to the way we promote self-care in the L-W-O Community we would prefer supported self-care but that is in short supply at this time, so we will continue with our self-care tips. I have already started to write about this topic and how it can be incorporated into self-care for those of us who live with lymphoedema.  In the meantime, I have one article out for publication and a second almost ready to be sent out.  To conclude this blog I found this quote which I thought was relevant to how I feel about the New Year of 2021.

 

"There is no reason to stop and thousands of reasons to go further"  Nintin Namdeo

 

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