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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Self-Isolation Week 5

Author: Gaynor Leech - Founder L-W-O

 

 

 

This has been a strange week, don’t quite know why but maybe it’s because we are in our 5th week in lockdown, as per usual we have kept busy.  This week I have read and researched many different things from researching family history, rereading or finding new lymphoedema articles, researching the benefits of gardening, which I will explain later and watching TVNTV, I will explain later.

A friend of mine gave up for health reasons her way of life to go and live on a narrowboat and she writes the most thoughtful blogs of her past life and her new life and what it is like to live with a chronic illness.  Her latest blog is on ‘memory funeralsand her writing will often trigger something, to make me think.  Since lockdown I have become far more reflective.

Sunday 12th April – Easter Sunday was probably the quietest Easter Sunday our family has had in years.  It has traditionally been a family day; where we all gather at our house usually for a braai (a braai is Afrikaans for barbecue which comes from our time living in Cape Town for four years).  Twenty of us gather for Easter including whatever current boyfriends/girlfriends our older grandchildren happen to be with.  Last year the weather was hot we had to use sunscreen what a difference this year.  This year hubby did a braai for the two of us and we like so many other families made the best of the day.  Really pleased this Easter that most people seem to be adhering to lockdown.

Monday 13th April – Bank Holiday Monday was no different to any other Monday, hubby did our weekly shop but there was very little fresh food about and the freezer is beginning to look rather empty. There are still no online delivery slots and our sons tell us under no circumstances must we try the bigger supermarkets because there are queues of between one and half to two hours to get into the stores.

Tuesday 14th April – Hubby has started to repair our garden fences and paint them they are long overdue for some TLC and some of them really do need replacing.  I had a further look at the Gardening & Lymphoedema video presentation I am doing, last week there was no structure to it but I am thankful to say I have had one or two light bulb moments and it is beginning to take shape.  Pleased to say not only do these videos play well on my laptop, they look OK on my TV, another little success I learnt how to do this week. 

Today was warm enough to eat out in the garden and I wore one of my sleeveless maxi dresses, makes a big difference from the tops and trousers I usually wear   L-W-O social media is very quiet and there doesn’t appear any major problems, I still check in most days but there is a sense of lethargy.

Wednesday 15th April – This was very much a productive day with two unexpected surprises at the end of the day.  I started the day clearing out my email boxes I use to have five, don’t ask me why but last year I whittled it down to three and this year I hope I will have two, one for L-W-O and one email address for personal use.  The L-W-O inbox has become a great signposting tool which means I get to see things that a few years ago I wouldn’t have access to.  One such gem was from Wounds UK sending me the link to TVNTV Tissue Viability News these are short, mobile friendly videos covering clinical developments.  I was particularly interested in the self-care videos on wound care outlining self-care possibilities and resources for suitable patients during these unprecedented times.  These videos are a good example of how Health Care Professionals (HCP’s) can communicate with fellow HCP’s but how this can also be used as a way for HCP’s to communicate with their patients.  Nothing will ever make up for the lack of face to face contact or physical presence but at this time this is a good option.

I found it heartening to see this week how hospitals are giving poorly patients an opportunity to speak to families who are at home via FaceTime or What's App as visiting times are restricted and there are travel restrictions in place. 

Not one for doing food shopping online but realising the freezer is almost empty I searched for local butchers who would deliver and while I was able to order everything I needed, there was minimum spend of £40.00 and a £5.00 delivery charge.  Nobody realises more than me how lucky I am to be able to do this but there is a frustration that if I was allowed out my £45.00 would go a lot further. Delivery is on Friday so we will see.

Towards the end of the day I received two anonymous donations totalling £135.00 this added to the small amount I have in the bank plus the four people who donate once a month means I have enough money to cover L-W-O expenses for four months so grateful and relieved.  Brightened my day.  In these difficult times groups like ours are at the bottom of the pile when it comes to fundraising so if you can donate this would be very much appreciated.

Thursday 16th April - Hubby this week has repaired 11 garden fences and painted them, so the one side of our garden and half the bottom end looks all tidy.  Unfortunately, he has run out of paint and our son has said the store is out of stock, so we must wait until more supplies come in.  Our next-door neighbour took a shine to two of the planter’s that hubby has made since our lockdown, as they chatted over the fence and they bought them.   

Eating out in the garden this week has been a real treat.  We have starlings nesting, blue tits, black birds, a pair of robins, wood pigeons nesting and the magpies have returned.  It is so lovely to hear the birdsong as otherwise everything is so quiet.  We did our clap for the NHS on Thursday evening.  Over the weekend I got quite cross with a woman from a street close by who was complaining that compared to other areas in earshot response in hers and our street was quite poor.  Two of us tried to explain via our local community forum that we have an older population who probably don’t have access to the internet and although they might see the NHS clap on TV many of them will have locked their doors by eight and probably won’t venture out into the street.  Several residents have taken to letting off fireworks with not a thought for nightshift/keyworkers, people in bed at that time whose shifts start around 2 am.

Friday 17th April – The meat arrived from the butchers and the freezer has meals for another two weeks.  My gardening video presentation is finished.  For me this is personal.  Why?  When I was first diagnosed with lymphoedema like many who are diagnosed you are given a list of ‘do’s and don’ts’ and often the list of ‘don’ts’ seem to be far greater.

Gardening was my passion before diagnosis and I loved to get my hands into the earth or compost, we had an array of colourful plant pots lovingly painted by me or my grandchildren and when the grandchildren had sleepovers they loved to help.  Together we sprayed furniture all different colours and spent time walking around garden centres perhaps stopping in the cafe for a drink or lunch as an extra special treat.  My birthday, hubby’s birthday and our wedding anniversary are within 10 days of each other and therefore, a big family and friends braai in August is motivation to get everything as colourful as possible.   Often catering for around 50 in my tiny kitchen, everybody mucks in and if the weather is wet, we put up gazebos. To be told it was something I couldn’t or shouldn’t be doing because I might prick myself on a thorn or cut myself causing a serious infection like cellulitis was a tremendous blow to my mental health as if being diagnosed with lymphoedema wasn’t enough.

As I learn more and more about lymphoedema I find that 75% of the ‘don’ts’ are not applicable to me.  I do have a rebel streak; I have a very questioning mind in that I want to understand my health conditions but sometimes when reasoning things out I am more the tortoise and not the hare, this has taken me nine years to work out.  It has taken nearly a month to prepare this video presentation on Gardening and Lymphoedema but there is something for everyone from indoor gardening ideas to outdoor gardening and how to include children especially those living with lymphatic malformations.

 

You need to take sensible precautions but don’t let your lymphoedema stop you from gardening.

 

 

Saturday 18th April – Mostly a day for pottering around, Saturday is the day I miss going out the most.

 

What have we learnt this week?

 

On Thursday our Government issued orders that lockdown would be for a further three weeks until May 7th.  I am extremely grateful that we were told from the beginning that self-isolation would be for 12 weeks taking us to June the 16th, therefore we were not surprised or upset by the official order.  I can honestly say that, like everyone else we have wobbles, but I am thankful that the two of us are coping surprisingly well. I am thankful that we haven’t irritated each too much because we have both been able to keep busy.  My family and friends are all keeping reasonably healthy and we have managed to speak regularly.

I found this quote from ‘Lessons Learned in Life’.

Never regret a day in your life

Good days give happiness

Bad days give experience

Worst days give lessons

Best days give memories

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