My name is Kelly Heywood, I am 24 and currently living in Manchester, England with my boyfriend who I met at University. I grew up in Buckinghamshire with my parents and two older sisters, and we spent most of our childhood on trips around the country to various sporting events. I now work as a digital marketer for an amazing company who are extremely supportive of my condition. I have (secondary?) lymphedema of the left leg, predominantly from the knee up and had LVA surgery in July 2016 at the Oxford Lymphoedema Practice.
I am often asked whether I have primary or secondary lymphedema, and the truth is I don’t know. I have had several major surgeries on my bowels, including two bowel resections and the lymphedema followed shortly after. Yet, I am continuously told by doctors and surgeons that unless I had lymph nodes removed or damaged from radiation this would not have caused my lymphedema. A lack of a definitive answer has itself been a cause of distress.
Looking back, the signs of my LE existed long before I had noticed there may be a problem. I remember returning a pair of ‘faulty’ jeans because one leg was much tighter than the other; at netball training I explained to my teammates that some days I would wake up and my left leg would look slimmer than the day before; bridesmaid shopping for my sister’s wedding and conversations with my Mum who thought I looked ‘a little bigger in the hip’. However, it was 6 months later, New Year’s eve 2015/6?, that my leg ballooned enormously and I spent the countdown to midnight on the phone to NHS 111 describing my symptoms over the phone.
With that the usual lymphie process began, I was told on one hand to ‘see how it goes’ and on the other ‘it could be cancer’, a remarkable contradiction I could not come to terms with. Following numerous scans and hospital appointments, I eventually found an explanation myself through research and arranged to see a lymphedema specialist.
The first 6-9 months of 2016 were a struggle as lymphedema hijacked my life. I tried desperately to hide my limb and had a break down with every attempt. I’d cancel plans with friends, stopped playing sports, spent an obscene amount of money on ‘lymphedema friendly’ clothes and my leg quickly became my obsession. It was hard explaining how I felt to friends and family who ‘if I hadn’t told wouldn’t even know the difference’ – thank you wide leg trousers and midi skirts.
Typing and searching #lymphedema in Instagram was the turning point for me. I found a group of people who DID know how I felt, who wouldn’t judge, and who could share their experiences with me. They understood the frustrations and disappointments that come with this illness. I learnt what other tools were available to help me manage my swelling and I found I had more control over this illness than I was led to believe. With this discovery lymphedema has gone from being my obsession to my passion. I am passionate about my health, about educating others, about seeing results and improvements for the lymphedema community.
Lymphedema is a game changer, there is no doubt that it affects your life, but it doesn’t have to decrease your quality of life. Right now, I’m still working on that second part. It feels surreal, and I’m still processing the alterations I’m making to accommodate this chronic illness. But, we are all stronger than we think we are, there will always be something we can do or change to help ourselves.
I want to inspire others to take their health into their own hands. We know that lymphedema has not yet been granted the medical and social attention it deserves, so, until this changes, we must do what we can without it.
My top 3 ‘can’t live without’ lymphedema materials:
Compression garments are a given! I really find flat knits to be much better at containing swelling. I wear them all day every day. I am happy to show them off and have others question ‘why is that girl wearing that thing’, maybe someday in the future they won’t have to ask.
Rebounder aka mini trampoline. My leg always feels that bit lighter after a few minutes, it can be done at home with bandages on and is therefore a great decongestion therapy.
Spin bike. Whenever I can’t make it to the gym I’m able to hop on my spin bike and get my lymph fluid moving. This means I have no excuses to miss a workout. It wasn’t cheap but its proved its worth a million times over.
My top 1 “can’t live with”:
Alcohol – Alcohol causes the blood vessels to expand and this increases the amount of fluid that accumulates within the tissues. Alcohol also has a diuretic effect – stimulating the kidneys and causing them to excrete more fluid from the body. This has a negative effect on tissues affected by lymphedema. Of course, I let my hair down occasionally, but avoiding the temptation is an important part of my day to day management.
My top tip:
Some may disagree with me here, but my best lymphedema tip, is to consult your employers about your condition. Talk with them, make them aware of your circumstances and give them the opportunity to support you. I feel incredibly lucky to work from home most days. I rest and elevate all day, then can go to the gym, see friends and be more active when I need to. I know this isn’t possible for everyone, but there should be something your employers can do to make your day-to-day more comfortable!
You can find Kelly here on Instagram: