Author: Gaynor Leech, Founder of L-W-O
This has been a surreal week, I have spent lots of time reading various articles, despite the lockdown forged new friendships, remembered with quiet reflection, then celebrated VE day and as a community had two incredible opportunities put forward for L-W-O.
Sunday 3rd May – I was thrilled so see one of members who has put a lot of effort into walking found that her most swollen foot and gone down considerably that her shoe was loose. When one of our members has a problem, I do feel their pain, but I am equally happy and delighted with their success.
Monday 4th – Hubby did our usual shop, but for the first time I got to go to the butchers. Yippee. Who would of thought that would be such event? Our local butchers are five minutes away in the car however it took us quite a long time to get there as we took a detour through the country lanes. This was the first time in eight weeks that I had been out of the house for any length of time and the sense of freedom was amazing. It was nice to see the meat and vegetables we were buying and for such a small shop I was impressed with the social distancing put in place.
Tuesday 5th May – I had a surreal day, an unplanned day. It started at 8.30 am chatting to one of our supporters by 12.00 pm, still in P.J’s (not something that happens normally) an amazing opportunity had opened up that I couldn’t begin to imagine when I eased out of bed. One of the aspects of running L-W-O is the amazing people I meet whether that person is one of our members or one of the many professional people in our community.
One lovely person I became acquainted with in 2017 via Twitter is Mary Fickling Director of PhysioPod UK Limited Mary has been a big supporter of ours, sharing our posts, sometimes offering advice and becoming a valued friend. We met first at a conference in 2018 and again at the MLD UK Conference 2019 together with her sister Julie Soroczyn, Managing Director of PhysioPod. Mary liked the gardening video I did and asked questions on why I was told not to do gardening and where did my passion for gardening come from? I wrote a short piece for her and the result of which is now on the PhysioPod website with a lovely piece about L-W-O. At the end of Wednesday morning Mary and I discussed a collaboration that relevant lymphoedema videos would go on their Vimeo channel. Presently I am working on the video formats for Instagram as they are different to our other social media formats.
Eventually, I toddled upstairs for my shower, ideas buzzing around in my head thinking when I get back to my laptop, I must plan. Well we all know what thought did. My bum had barely settled on my office chair when I received a direct message from another of our supporters who is a Clinician and Therapist and could we talk via telephone. We spoke for two hours, about lymphoedema our community, the successes and most of all our frustrations. I am looking forward to further conversations over the next few weeks as to how we can help each other but also, I hope this will give L-W-O more clinical information that can be added to our website. By now my poor old head was in explode mode, so for the rest of the evening I watched trash TV and managed to clear my head before bedtime and thankfully, slept extremely well. Big thank you to my hubby for keeping me in tea and coffee all day as even he understands the importance of staying hydrated.
We also shared a post on Manuela Lourenco Marques from Portugal, patient advocate, L-W-O member and the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Paediatric and Primary Lymphoedema Working Group (PPL WG). Manuela shares her journey living with primary lymphoedema, what it means to her being an ePAG and participating in the PPL WG.
Wednesday 6th May – was a noticeably quiet day across our social media, which I was thankful for and quiet on the home front as well.
Thursday 7th May – A change of pace. I am very lucky to belong to two local community forums the one especially has worked extremely hard on encouraging people to get involved in VE day, with local streets being decorated and the most amazing knitted/crocheted poppies decorating lampposts in their village. My immediate local area has been vocal in coming out for the Thursday evening NHS Clap, and are calling for people to have a picnic in their front gardens while practising social distancing. We did not think we had any bunting, but we found some and our eldest DIL found us some red, white and blue bunting. Now the question, would we be able to get the neighbours to come out and picnic on their front gardens? I designed, printed 30 plus leaflets and hubby posted them through letterboxes on our stretch of the road. I had three who said yes immediately but we would have to wait and see.
My son with my youngest granddaughter in a baby seat and my six-year-old granddaughter came up to see us on a bike ride which made our day. In the evening hubby decorated the outside of the house with union jack bunting. My youngest son asked how I got up on the roof to put the bunting up. Really? Me on a ladder, he should know better, I did my usual and supervised hubby, my days of climbing ladders or even a step-up stool are over because my balance is terrible
Incredibly happy today to welcome two new members to our children’s group.
Friday 8th May – Thrilled to see one other neighbour had put bunting up. At 11 a.m. there was the silence to observe and a time for quiet reflection. Still not sure if anyone else would join us for a picnic in their front gardens, on the leaflets I had put the time 4 p.m. – 6 p.m. Lunch time our afternoon tea arrived from the pub and it looked lovely, it is the first time in eight weeks we had treated ourselves. Although our children and grandchildren have brought us treats like home baked cakes, chocolate cookies and Easter eggs, we have been spoiled. Three o’clock and I sat and listened to Churchill’s speech. Hubby took our small garden table and chairs out to the front of the drive. One by one neighbours started to appear and I counted 12 households had come out. This was a success for our normally quiet street. With social distancing in mind we all got to have a chat, we met new neighbours and found out the names of those we did not know. One of our neighbours is a musician and he brought his speakers out and we had music all afternoon. Considering the restrictions, we were under we had a fantastic afternoon. We finally wrapped up at 7.30 p.m., the afternoon ended with a promise when we can celebrate properly, we will get together and have a proper street party, but do not think that will be until next year. Time for a tidy up before settling down to listen to the Queens speech.
Saturday 9th May – I make no secret from a non-medical point of view that I believe genetics play a big part in how our bodies react and the traits we inherit so, I read this morning a fantastic article on Obesity: A Disease of the Brain? All my life my weight has seesawed started to get out of hand at the end of my first pregnancy. Having tried most available diets between the 70’s – 90’s it was only when I started to become comfortable in my own skin and started to say to myself “this is me if you don’t like it tough” then things improved. In both my maternal and paternal family, we had people who were either stick thin so you could see their ribs and then there were those who were exceptionally large. I have always fallen in the middle. From 2010 – 2015 my weight ballooned whilst taking Tamoxifen, nothing I did made any difference. Once I stopped taking the Tamoxifen, I made a conscious decision to go back to how I ate as a child, in my own way I had worked out that if I had my main meal of the day. in the middle of the day, my weight held steady if not reduced. This was also the time I reverted to small plates and my meal plan became three meals a day breakfast, dinner, and tea in that order. However, being retired gives us freedom to eat when we are hungry in other words there are no set timings.
Those that follow me will know that gardening is a big part of my life and therefore eating the right amount of fruit and vegetables was never a problem, nor was the exercise. By using smaller plates, it took me six years to lose six stone.
Am I skinny?
No.
Am I considered obese by the medical profession?
Yes.
Am I happy with me?
Yes.
“It’s time to stop shaming and blaming people for their weight and start treating obesity for the chronic, relapsing disease science says it is”. I fully understand that being obese isn’t good for lymphoedema and I fully understand that we need to keep the lymphatic system moving and as the lymphatic system doesn’t have its own pump that the only way is to get moving, we need much more research and understanding.
Looking forward to next week as L-W-O website and Community page are in their seventh year but next week our biggest success which is our support group will celebrate its 6th birthday. Lots of things have changed, as a community we are evolving and on a personal level the changes to my life have been massive.
What have we learned this week?
The importance of community whether a neighbourhood that comes together to celebrate an event like VE day or us staying home collectively to beat Covid-19 or our lymphoedema community working together to support each other so that we can all speak with one voice. We still do not know what the future holds for our lymphoedema community, will lymphoedema clinics be re-opened? Will services resume? Or will services be drastically reduced? When lockdown is officially over, and social distancing becomes a distant memory we will all need to keep advocating to get lymphoedema recognised and make sure there is support for those living with lymphoedema. As the building blocks are put in place for us all to move forward our community must work together to make sure that progress is not stifled and we don’t stagnate. This week I will leave you with one of my favourite quotes.
“A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has.”
—Margaret Mead
