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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Self Isolation Week 3

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

 

Sunday 29th March in case you missed it we had a few snowflakes morning and afternoon, both times it came to nothing, but the wind was icy cold and an attempt to walk around my garden took my breath away.  Not Covid-19 but Asthma.  However, it did remind me that I could smell the grass that pollen season would be striking soon.  This means people like me will be sneezing or coughing and probably have itchy water eyes.  Please do not assume the worst, Hayfever and associated allergies are creeping up on us fast.   My symptoms are likely to be less because I am permanently on an antihistamine as some of my medications make me itch not good for someone living with lymphoedema. 

Hubby and I kept busy, he in his workshop and me making new posters.  We had a lovely What’s App with our two youngest Grandchildren, the little one has learnt to sign language at nursery and her favourite saying is ‘Oh my’ she is so funny when I blew her kisses she blew them back but also kept kissing the screen.  As a family they are in isolation, my son who is a key worker (Electrician) thinks he may have had the virus but without testing can’t be sure but and my daughter-in-law is poorly now and was diagnosed over the telephone by the hospital.

 

So Quiet

 

Monday 30th it’s so quiet with no traffic every little noise seems to be twice as loud.  The only clock that ticks in my house, is driving me nuts, normally don’t hear it, if it wasn’t so high up it would be out the window.  There are two noticeable differences the first we have no planes in the sky while we are not directly over the flight path for Birmingham airport we are reasonably close to see and hear the planes especially the one around 6.30 am and the one at 11.30 pm at night when its quiet.  Our neighbours further down from us have worked out that the electricity pylon nearest to our homes is humming which is very distracting for those who suddenly find themselves working from home.  Thinking about it daytime I don’t tend to hear it but from sunrise on until other background noises kick in, it is distracting.

Hubby has had a bad day; it looks as if he needs antibiotics. Neither of us had a good night’s sleep, the consequences of that meant that every time I sat in my chair, I fell asleep and he went back to bed for a couple of hours which is unheard of. Our GP surgery have been amazing after speaking to the receptionist the GP rang us back in less than five minutes. 

Tuesday 31st catch up day, speaking to those I would normally be with at the over 50’s club, just to say hello.  Not really done a lot but looking at different video conferencing options and researching the best options for internet security.  Video Conferencing, I have the free Zoom, for a small group like ours it isn’t viable to go for the paid version, I have mastered the one to one but trying something bigger and it’s all gobbledygook. I put out a call for volunteers on our support group so that I could experiment and learn but there was no interest. I guess I will not be doing that in the future. Internet Security the company I have been with for years has become very expensive and their renewal is only for 12 months, so had a good shop around, if I was a new customer, I would get it for half the price.  Loyalty counts for nothing.

Renewed my Lymphoedema Support Network (LSN) subscription of £15.00 for the year, please do join if you can your subscription entitles you to:

Free access to a wide range of leaflets covering all aspects of living well with lymphoedema
 News about treatment innovations and research
 Quarterly newsletters containing articles from both experts and patients
 Free access to a range of online self-management videos

They also provide website, self-management DVD’s, social network communities, patient conferences and support line.

 

Wednesday 1st April, and the start of the new financial year.  Thankfully my software does my books for me, so they are always up to date.  Financially the last 12 months L-W-O has just about kept our head above water.   Our PayPal business account is now closed as we are too small for the stringent banking rules they have put in place.  Now we operate from our Lloyds Treasurers account and we have our Golden Giving account, unfortunately not had a lot of time to promote that.  We have four members who make monthly donations which I am grateful for as it covers our monthly costs and we have a handful of members who do donate once a year. L-W-O does operate on a shoestring and financially unless more members donate, we will not survive this year financially.  The end of the financial year shows our bank balance at the lowest its been since its opening.  I gladly give my time without question, but I cannot afford to run L-W-O out of my pocket. 

Our daughter-in-law is feeling much better today and has been out in the garden with the children, our youngest grandchild has learned to climb the garden slide and we where able to watch via video as she did this.  Such a privilege to watch different stages of her growing up something we would have missed a few years ago thank goodness more than ever for the technology we have access to.

Thursday 2nd April the day flew.  I finally found good internet security for half the price of my usual supplier and an added benefit instead of one year I got two, better still I can have it on unlimited devices whereas the old one was limited.  It then took me two hours to remove all the old security from our devices and add the new security, it’s the granting of all the new permissions that takes the time.  Despite the time it took I call this a result and it made my day, its always the little successes in life that mean the most.

We did the clap for the NHS surrounding streets were quite noisy but ours was quiet.  Everyday I have spoken to our members there have been no major issues although for some members the scourge of cellulitis is ever present.  New scenarios have cropped up and there have been questions on redeployment both on private messenger and support group as to what rights members have.  The fear is that these changes of redeployment will affect their lymphoedema.  Once again grateful for the advice from Karen Friett at LSN. 

Friday 4th April L-W-O support groups have shifted focus slightly from living with the symptoms and challenges of lymphoedema to a more mindfulness approach. When you live with a long-term condition like lymphoedema mental health issues often become one of its problems. I think at this time it’s better to focus on making sure it doesn’t become the overriding issue.

Some of our members are writing poetry or sharing positive images. Others are struggling we have members living in flats whose young children have several challenges.  A few members are feeling tearful which is a natural response with what’s going on around us.  Those who normally work from home aren’t finding too big of a change apart from not being able to go out as much, but it is harder for those who suddenly find themselves working from home which for them is a big adjustment.  It raises the question that when this is all over will working from home become the new norm?

Saturday 5th April, I wouldn’t normally be working on admin for L-W-O because we would be out and about but as that’s not possible hubby has been busy repairing a couple of garden stools giving them new life and I have had the pleasure or not of decluttering my office.  The shredder is none to happy and at times is making some funny noises or maybe it just sounds louder than normal!  We also heard our great granddaughter singing a song and lots of new photographs of her which made our day.

What have we learned this week?

 

That there are still people out there that are not taking the threat of this virus seriously, that they can carry on their everyday lives as if there is nothing happening.  Do they not see or hear that in the UK 4,313 people have lost their lives five of those are health care professionals and 41,903 people are confirmed to having the virus?  There will be many more unconfirmed cases.  These people really do beggar belief.

On a personal level new computer skill, how to change the appearance of my google home page and add more information to explain the icons…small successes.  Appreciate more than ever the access we have to technology that keeps us in touch with friends and family.  How social media platforms have changed from doom and gloom to funny talented people sharing humour and lots of music. 

 

What have I found inspiring this week?

 

The businesses that are finding ways to diversify whether its restaurants/cafes/caterers who have started to do free delivery take-aways.  The entertainers who have moved online to share their work very much unpaid.  Companies who have donated to the NHS and other organisations in need whether that be food/groceries or PPE.  The army of volunteers that are helping in our local communities to reach the elderly and the most vulnerable.  The people that have contacted us either just to say hello or ask how we are.  There is also a realisation that in times like these you need a hobby and that you can learn new skills.  This week more than ever I have been reminded of something I wrote on our website in 2013 and often did as an exercise routine on our lymphoedema awareness days or when I was out training.

Knowledge is Power

Knowledge shared is power multiplied

Today I am empowered

 



 

 

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