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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Self - Isolation Week 10

Author: Gaynor Leech Founder of L-W-O

 

 

This has been another crazy, busy week, creative, productive and one that has absolutely flown by. Yet is has not been stressful or tiring which you would have thought it might have been.  Routine and structure have gone totally out the window, but the end results have been absolutely worth every minute.

Sunday 17th May – a rest day, catching up on some reading with my feet up and apart from cooking Sunday Roast a quiet day.

Monday 18th May – busy trying to finish off the weeks blog, it does not look as if it will go out today, oh well “what will be will be”.  Hubby has gone off to golf, they are only allowed to play nine holes either the front nine or the back nine.  He returned to golf for the first-time last week, they had to contend with dog walkers and joggers on the greens as people had not realised the course was open, none to happy about that.  They are allowed to play a two ball and social distancing was maintained although anyone who understands the etiquette around playing golf will know a lot of hand shaking usually takes place so once or twice some of the members needed to be reminded that couldn’t take place. 
 

The 18th – 24th May is Mental Health Awareness week and the theme is Kindness.  I did not do a lot to promote this because as part of our ethos of self-care L-W-O encourages our members to not only be kind to each other but importantly to be kind to themselves.  

Tuesday 19th May – I finally managed to get last week’s blog published.  Interesting post below on our children’s group today from Pernille Henriksen European Patient Advocacy Group (ePAG)

“There seems to be opposing opinions to the effect, benefits and usefulness of MLD (Manual Lymphatic Drainage) as compared to compression (bandaging and garments). Or that MLD is not warranted in the maintenance phase as opposed to the reduction phase. However little to nothing is known about this for children with primary lymphoedema and their patients/carers.

Please let me know your opinion?

  • Were you taught to do this by a clinician?
  • Are you encouraged to do this by a clinician?
  • Do you do this regularly?
  • Do you do this with or without bandaging?
  • What kind of effect do you see or are looking for?
  • volume reduction, volume maintenance, pain relief or pain management, stress/anxiety relief, aid in mobility, aid in range and motion …

The answers were informative, and our parents gave great insights with a range of answers those that took part appear to use MLD or a combination of MLD and bandaging. Those children who are under St Georges have received good instruction on how to self-care for their children and encouraged to try new methods like Kinesiology Tape.  MLD or massaging before bedtime helps the children relax so that they might have a calmer night.  At this time, most of our children are under the age of five one parent made this comment. “I can say good MLD before wrapping and sleeping makes my child very relaxed.  It may reduce his pain, but I will only find out once he starts explaining everything more clearly (too young now)”.

Thank you to Pernille for this question and our parents who responded.

The weather is warm and sunny not a day you want to be indoors. We travelled the scenic route to the butchers and stopped off to see two of our grandchildren on their doorstep while we sat in the car.  There is such a perplexing rule in place now as part of lockdown.  One of us can go to the local park and meet one other member of our family or a friend, this means a drive to the park, a walk through the entrance dancing two metres around everyone who has the same idea. Then in my case I would need to find a seat and sit two metres apart from whoever I am with and anyone else can come and say hello and you hope they will adhere to the two metres apart while they are talking to you.  Is this still not a risk factor?  However, I cannot invite one member of my family or a friend (they usually come in twos) who have all been in self-isolation for 10 weeks to come through my back gate and sit in my garden two metres apart in this beautiful sunny weather. I ask myself “when did you learn to swear so much”?

Then off to see one of my younger Granddaughters who will be seven tomorrow with a present and card.  While we sat in the car, she came out with her little sister who is 18 months old and they chatted away and played with a ball and said hello to anyone who was in the street.  The little one blew kisses when we left, and I struggled to fight back the tears for all the hugs we have missed over the last 10 weeks.

Time to check in on support group. You might remember or not when we started this lockdown journey I had to decide whether to keep our community strictly all about lymphoedema and I took the decision that for the time being other subjects would be allowed.  Late afternoon I posed the question to our members “What has been the most positive activity you have achieved through lockdown”? I was not disappointed, we had 58 comments and I was thrilled to see how busy they had been.  Gardening seems to be one of the main activities, with members starting their own vegetable patches, growing vegetables from seed for the first time.  Lots of cooking including with young children. One member proudly stated she had read a ‘whole book’.  While others were pleased to have saved money because they have nowhere to go out to spend.  My favourite was the member who has worked on her online business and in her own words “it has taken off”.  Members posted art, photography and one member posted this lovely comment “This is a really lovely post, not just here in the comments.  It is really good I love it.  Made tears come to my eyes”.  Thank you to this member for your lovely kind words.

Wednesday 20th May – The weather is beginning to ‘hot up’ we published our Lymphoedema Summers poster with tips and advice on how to protect our members.  Last week I said we were going to start a partnership with Mary Fickling from PhysioPod UK whereby I would provide the tips from our posters, she would then convert them into a Vimeo video, I would write a short introduction and then they would be published on the PhysioPod website and Vimeo channel and I would add them to our You Tube channel and between us we would promote our joint work across social media.  So, the process begins, watch this space to see how we get on.

I had a few teething problems with the website today I have been learning more about Hex Colour Codes and have finally managed to get our website Header the same colour as in our logo.  Trying to design a new Footer has been a nightmare and although I made some changes it was not quite what I wanted to do however, I am not disappointed as I have added a couple of new features.  In 2013 I started the website with five pages we now have 54 and the last 10 weeks I have removed pages, added new pages, shortened pages to make them easier to read and I am now in the process of improving page navigation.  Our Home page has a new look, layout and information and I have made it easier to contact me via the website with a brand-new Contact page.  Several other pages are under reconstruction and over the next few weeks they will be promoted via our social media platforms.

Thursday 21st May – Today we put out our second poster on how to get a Cool Nights sleep while living with lymphoedema.  A day of ‘toing and froing’ working with Mary as we worked through Lymphoedema Summers and the Cool Nights videos.  New skill learnt as I discovered how to down load a Vimeo Video to our You Tube channel. We have had our You Tube channel for three years and probably not made the best use of this forum.  When I look at the earlier videos I did and the ones going out now there is a huge difference and while I might take longer than others on all things techy, life for me is all about learning new skills.  Click on the You Tube link and please subscribe the more subscribers we get the more incentive I will have to produce more lymphoedema awareness videos.  A very productive day.

Friday 22nd May – The two new videos are up on Vimeo and the PhysioPod website Lymphoedema Summers and Cool Nights inspired by the posters I produced.  It was great fun working with Mary Fickling and I am looking forward to working with her in the future.  The website has two new pages and the Holiday Care page has been shortened, even in it does not look like it now.

Saturday 23rd May – has been a play day as I have been looking at options to expand L-W-O’s reach.  Watch this space.

What have we learned this week?

That sometimes you can get away with breaking the rules you set yourself, breaking free from routine can be exhilarating, creative and productive.

 

Coming together is beginning: Keeping together is progress; working together is success.” by Henry Ford.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    

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