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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Self-Isolation Week 9

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

 

 

 

 

 

Sunday 10th May – was a quiet day just the two of us, hubby pottered around while I took a day away from social media, to recharge my batteries after last weeks busy week. A day to remind myself that what I do for L-W-O is as a volunteer, a day for some ‘me’ time.  I cooked a lovely Sunday roast but having cooked everyday for the last nine weeks without a break I am beginning to say, “when this lockdown is over, I will never cook another meal”. I bet I am not the only that is saying this.

In the evening we settled down to watch our Prime Minister talk to the nation about the next phase of easing lockdown and like many of our friends we were left confused and angry by the new message to “stay alert”.  The consensus being that we all felt that lockdown should be for another three weeks as friends of our age understood it would be for twelve weeks, and we were looking at the 16th June before easing would start. 

Monday 11th May – I posted a mini poll and asked the question of our adult support group.

 

 

A 128 members took part and nine members who said that their lymphoedema felt better, this seems to be the ones who are not working and would normally be on their feet all day one member posted “At the start it did wonders with not being on my feet all day but now I am less active (trying to keep active) can’t wait to get back to work”.  It was encouraging to see that members working from home have done their best to keep up with exercise routines with Zumba being replaced by Pilates and many of them going for a walk.  Both our European members and UK members are missing swimming and the aqua exercises that they would normally do.  Initially there was a suggestion of members putting on weight when lockdown started.  An abundance of Easter eggs, home baked cakes and chocolate cookies from our grandchildren did not help us, even though they were nice.  The consensus was as they adapt to different exercises then they are now reaching their pre lockdown weight, including me.

 

Tuesday 12th May – was a day to catch up and share some of the articles I had been reading. As you might know I do huge amount of reading on lymphoedema and the lymphatic system but I do not post articles willy nilly and tend to only post articles that my non-medical brain can make sense of.

 

Wednesday 13th May – I asked the question of our adult group “When diagnosed with lymphoedema were you told not to do an activity that, you now know is a myth?”  We had 119 comments, and this was interesting so here are a few that created the most discussion.

 

  • No hot tubs and saunas
  • Hot tubs and saunas but no longer than 10 minutes
  • No shaving of legs with a wet razor
  • No tattoos
  • No Dettol baths
  • To be careful around pets
  • No gardening

 

This question also sparked lots of discussion on the importance of skin care and how this must be our priority.  I was pleased to see that the above list was shortest ‘do not do list’ I have seen in a long time.  One of our expert patients gave a detailed description on what could happen if you are bitten.  What did come out of this discussion is that some members are still being told there is nothing can be done for them therefore, given no advice. This is were groups like L-W-O do become useful.  What we need more than ever is a consensus to work together to make sure our community is all singing from the same song sheet. This leads very nicely to the following video from Professor Pillar “Why do GP’s and HCP’s need to learn about lymphoedema?”

Thursday 14th May - Today is this support groups 6th Birthday the time has flown; my life has changed beyond all recognition. Each day brings something new, and rather than slow down as a 'pensioner' I am busier than ever and just recently I have talked to somebody new everyday as L-W-O makes new connections The future for the L-W-O community is looking good. No longer do I go to bed at night wondering whether I have done the right thing. I have never been afraid of constructive criticism, but I no longer worry about the derogatory comments that sometimes come my way.

 

The British Lymphology Society has produced a survey aimed at Health-Care Professionals (HCP’s) The Covid-19 Impact Survey as there are serious concerns amongst patients and HCP’s that services may not be reinstated after lockdown is lifted.  Please take part.

 

Friday 15th May – this was fun or not I tried my hand at editing one of our YouTube videos after working out how to do this I successfully managed to edit out some dead spots on one video feeling chuffed with myself I thought I would try my hand at another, oh dear not so clever, not happening will have to try another day.  Throughout lockdown I have been looking at ways to improve the L-W-O website and successfully managed to disappear the whole of the Healthy Living Series, thankfully I found it all again. The hosting package seems to have added to some new features so I will have to be careful which buttons to push.  Running the website and keeping it up to date and relevant is a never ending learning curve, but I do enjoy seeing the results.  We receive no official funding towards website costs and and I rely heavily on the generosity of our members, followers and supporters so if you can support us by making a donation, no amount is too small and all donations are gratefully received.

 

Saturday 16th May – is always the hardest day because we cannot get out and do all the things we would do before lockdown.

 

What have we learned this week?

 

I guess this week for me it has been about the L-W-O support group  through lockdown it has been my life-saver, which has kept me busy away from the TV and all forms of negativity.  However, it is much more than that, it is the sense of understanding that our members have for each other.  Not just the support they give each other but the friendships that have been forged.  Everyone of them has a story to tell they need someone to listen, there are those that are baffled by lymphoedema and how its altered their lives but it is also encouraging that the members who have lived with lymphoedema for a long time are willing to support each other. Asking for help is not always easy and my friend Nemo has written a very thoughtful blog  ‘Lessons in asking for help’.

 

Support groups like ours are valuable and I sincerely hope that services for those of us living with lymphoedema will not be cut once lockdown is over.  I know what it is to have a rubbish day, a day when you would rather not get out of bed and you must push yourself just to start the day.  The resilience and support our members give to me and each other is awe inspiring.

 

Encourage, lift, and strengthen one another.

For the positive energy spread to one will be felt by us all.

For we are connected, one and all. –  Deborah Day

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