Author: Gaynor Leech, Founder L-W-O
Sunday 26th April - It is hard to describe how the weeks are panning out, like many others around the UK at times we have been lethargic, we seem to both be constantly tired and yet apart from the usual aches and pains that might keep us awake overall we are sleeping particularly well. We are struggling with knowing what day it is, we know today is the 26th but is it a Sunday or a Wednesday? Who knows it is becoming more and more of a problem as days blur into one, from conversations with friends and family we know we are not the only ones feeling this? We are both thankful that we have plenty to do and extremely thankful we have the space to spend some time away from each other by one of us being in the garden or another room.
Monday 27th April – Hubby is doing the essential Monday shopping on pensioner hour, not the best day for fresh food but by far the quietest day, and apart from the daily walk we are staying in.
However, the urge to want to break free is getting stronger
Our adult social media is becoming quieter by the day and even my email inbox is drying up. Not sorry about the emails. Last week you might remember that on Monday morning one of our expert patient members posted this interesting article on temperature and skin discolouration and the relevance to lymphoedema possibly indicating cellulitis. It has been since reported that there has been a small number of children (fewer than 20 cases) that have shown different skin manifestations resulting in “multi-system inflammation” with flu like symptoms. I understand in the UK this was first picked up in the North London area but yesterday the 26th an alert went out to all GP’s. When I first posted this article on skin manifestations neither our German family or our member who is the Co-Chair ePAG PPL (Paediatric and Primary Lymphoedema) had heard this. I should add here that we were not the first country to discover these skin manifestations however, there does appear to be some variations of symptoms on Covid-19 between countries.
Our Children’s support group has 85 members, this is made up of 76 families and we have nine members who work professionally in the lymphoedema community or have strong interest in Paediatric and Primary lymphoedema. In 2019 I was invited to become a Patient Representative for the European Patient Advocacy Group and this has helped immensely with access to information for our families and those living with Primary Lymphoedema. Our Children’s group is the quietest of our social media groups. We have families whose children have variations of lymphatic malformations.
Tuesday 28th April – I spent the day on my family history the new website layout is coming together nicely and I have 13 family member pages that now have a structure and the photographs to go with them so feeling chuffed to have taken this hobby up again. Once the website is fully up and running, I can then go back to researching our history.
Wednesday 29th April – I posted the poster below on support group that shows that a Northern Italian Hospital had found the following skin manifestations. This post generated a few comments. One of our Mum’s reported her son had had chilblains the previous month and nobody could find out why. In her research she found the following article published by The International Journal of Dermatology by the online Willey Library on the 24th April where a group of dermatologists had been treating urgent cases from home via an application made available by the Spanish Academy of Dermatologists and Venereology. The research was conducted on a mix of age ranges.
I was then reminded by one of our support group members of a rash she had which started in March that took three to four weeks to clear up. She experienced tingling in her chest followed by cold sores and mouth ulcers. When you live with a disease like lymphoedema you understand unexplained side effects can appear and disappear and most of the time you will explain it away as your immune system being down. Stress can also play apart. However, was this anything else? Then talking to my daughter-in-law she reminded me back in January Ezmae-Kate my great granddaughter who has a lymphatic malformation started with a high temperature, followed by snotty nose a nasty cough and was covered in a rash that nobody could explain. The Mum who reported her young son had chilblains said nobody could explain why. I am not for one minute suggesting that these where related to Covid-19, neither am I suggesting this has anything to do with lymphoedema but it does make you wonder as the skin rashes and chilblains were not something that would normally happen. What we do know is that living with lymphoedema we do have compromised immune systems.
Thursday 30th April – The British Association of Dermatologists published this press release on the Spanish research which is far easier to follow for a non-medical mind like mine. Skin problems can be a side effect of lymphoedema both our adult and children’s groups are asking for help after using hand sanitisers. The use of hand sanitisers has dried my skin, made my hands very itchy and they did start to crack. For me it is soap and water and moisturising as much as I can which for now has solved the problem. Please remember most hand sanitisers are highly flammable so keep them away from a naked flame.
I am a great believer in dry skin brushing so I was thrilled to see some of our parents use this as part of their children's skin care. Instead of the type of brush I would use, parents use a soft baby hairbrush. Some of our parents like to massage their children's feet during the bedtime bath while the child's feet are under warm water which they say is helpful to aid sleep but also it helps reduce pains the children experience at night in their feet. There was also an informative discussion on whether a child should be given pain medication at night, and while some parents where reluctant to do this, some of our parents felt when necessary this should be given.
Friday 1st May – Today I was informed that a short feature written last year on my lymphoedema diagnosis has been published on the 3M Science Applied to Life website you will find this on the page highlighting the Diagnosis of Oedema and this includes a holistic assessment of lower limb oedema. I never cease to be surprised that people are interested in my lymphoedema journey. The hot topic on support group today was exercise, talking weights, circuit training and YouTube exercise videos lots of good tips and suggestions.
Saturday 2nd May – Very quiet today, we have just been pottering about, watched a little too much TV me thinks.
What have we learnt this week?
The importance of mental health and the continuation of self-care When we were advised that self-isolation and lock-down were on the horizon I had a decision to make as whether to keep L-W-O Community a Covid-19 free zone or to allow other problems to be discussed should they arise. I took the decision for the sake of our communities mental health that, we would allow other issues to be discussed but in doing so we would try to keep the groups informed and positive. For instance, on our children’s group we posted lots of activities that including learning, being creative and fun exercises. On our adult group we have posted inspirational quotes, posters to make you smile and a few fun exercise videos. We all need a smile and a giggle, and as well as our #staysafe #stayhome #handwashing messages we also need to say it is OK to have a wobble, or cry in these unprecedented times but lets find a way to support our communities mental health. Here are tips on Mindfulness.
“Be happy in the moment, that’s enough. Each moment is all we need, not more.” Mother Teresa
