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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Taking a Break

Author:  Gaynor Leech Founder of L-W-O



Noticeably short blog, hopefully from next week I will start easing back into looking after the L-W-O community.  I hope you are all well.  As a family we have had a difficult time recently and my priorities will always be my family.

Hubby has been quite poorly, and he had a couple of days in and out of hospital with them running tests.  Unfortunately, because of these unprecedented times I could not be with him and I think the stress of it all got to me.  Thankfully he is well again but living with CHF each day is different. Although support group has been exceptionally quiet over the last 16 weeks my workload just kept increasing and there have been lots of exciting things going on in the background that I will be sharing over the next few weeks.  I need a part time admin assistant with social media experience and a head cook, bottle washer and cleaner extraordinaire both voluntary - both unpaid.  Will I get any takers? Oh well I can dream.


If I have not answered your emails or messages, please be patient I will get to you

Thursday 18th June I signed up to do the Eurodis Digital School Webinar on Social Media and this has given me lots of inspiration but it has also made me think whether to get rid of or streamline our social media that is not as active. Successful social media groups rely on the members to drive it forward to keep it active if that does not happen then then there is no point me putting my time and energy into keeping it open.  We will see.  The course also explained in detail about the Facebook algorithms and why we have had trouble with the way Facebook now operates therefore, we are not seeing the growth we once did.  Interestingly Facebook is still considered to be the best place for groups like ours to operate, followed by Twitter and Instagram.  My personal Twitter, and our L-W-O Twitter accounts have grown to over 800 followers over the last few weeks and my LinkedIn account I suddenly have 161 followers the last time, I consciously looked it was around the mid 70's. 

Sunday was Father’s Day and we were visited by five of our Grandchildren which was brilliant, and we were able to sit outside from 11.00 am – 3 pm in the garden before the temperatures dipped.  It is lovely to be able to see them again after such a long-enforced break I have missed each, and every one of them so much.  Still missing my hugs.

Sunday evening settling down and our world tipped upside down when my eldest son phoned to say that our 16 old granddaughter had gone into anaphylactic shock and her life was in danger.  However, the ambulance arrived within five minutes and due to the skills of the paramedics who saved her life and got her to resus and the work of the resus team she has survived and is safely back home.  Nobody can give us answers to why this happened, and there will be lots of investigations and tests over the coming weeks.  She will have to carry an EpiPen for life.  Ironically, this is the granddaughter who wants to train to be a paramedic.  She is waiting on her GCSE results which are being assessed differently this year and in September she will be going to 6th form college to do her A levels.  A big thank you to the paramedics and GEH for the excellent care my granddaughter received.

I do my best to support other lymphoedema organisations through me paying an individual membership and I will happily signpost our members, followers, and supporters to these groups to do the same.  If there is any other way, I can support them by promoting their work, and events I will.  Whether you are a registered charity or an unregistered charity like L-W-O working within the legal guidelines set out by the Charity Commission the financial challenges this year are tougher than I can remember and I have been volunteering in one capacity or another for over 40 years. This year more than any other year I have had requests to put links up across our social media to support various fundraising events for other organisations, and in the past I have had no problem with this but this year for the sake of our own financial health that is not possible.  If you can support us by making a donation I would be grateful.

I have enjoyed the rest and barely touched my laptop  

Lesson to learn

I must remind myself frequently – "you are a volunteer"




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