Live your best life with Lymphedema.

Kerry T.

“You don’t need to hide your lymphedema from the world, that it’s part of you. It’s what makes you unique and that you should embrace it” – Kerry.

 

I’m Kerry Thomson. I’m wife to Pete, mum to Angus (5), Tilly (3) and Rory (1). We live on Pete’s family farm in wilds of Scotland together with one dog, five chickens, 150 cattle and 2500 sheep.

Before becoming ‘mum’ I was Relationship Manager for the most incredible charity Children’s Hospice Association Scotland (CHAS) and prior to that I worked in London as a reporter for a fine art and antiques newspaper.

I love colour, loud music, good food, red wine, black coffee, a good gin and tonic and my beloved family. When I’m not at home on the farm you can find me breathing in the surf on a windswept beach in my adored Cornwall or talking the hind legs off a donkey with my oldest pals in my native Northern Ireland.

I have Primary Lymphedema on my left leg – stretching from the tips of my little sausage toes, right up to my thigh. It began when I was 18 when I was bitten by a horse fly on my inner thigh on a gorgeous sunny summer afternoon when out water-skiing on the River Bann in Northern Ireland with a bunch of friends. I’ve always reacted badly to insect bites but this was different. The infection around the bite spread rapidly and was hot and sore. Aside from the pain and infection around the sight of the bite, my ankle became horribly swollen. I had just started a holiday job as a waitress to save money for starting university. The job required me to be on my feet for long periods of time and by the end of my shifts my ankle bone had disappeared and I could barely flex my foot. After three days I went to A&E who gave me some diuretics and sent me on my way.

Weeks passed and the bite calmed down and disappeared but the swelling remained. Over the course of the next two years I visited my GP on numerous occasions. None seemed particularly bothered by what I showed them and all continued to give me diaretics. I wish I had been more pushy and demanded more answers but I didn’t – doctors know best I told myself. It wasn’t until I was almost 21 when a casual conversation between my Dad and a friend of his who happened to be a Consultant Vascular Surgeon began to shed some light on what on earth was wrong. From what Dad had told his friend he was sure I had lymphedema and asked me to come and see him. When he saw my leg, saw the degree of swelling, the difference of volume between my left and my right, saw the pitting edema, he was confident to give me a diagnosis of lymphedema.

The relief at finally knowing what was wrong was huge, but I remember the feeling of utter despair when he told me that there was nothing that could be done. The condition could not be reversed. That early intervention is key and had I been diagnosed back when I was 18, my outcome would have been hugely improved.

Whilst I am acutely aware that there are many worse things in the world to be diagnosed with, I still found the diagnosis of lymphedema really tough. We live in a tough world where people are held up and knocked down because of how they look. To have a long term chronic condition which effects your appearance is tough. To be diagnosed with such a condition in my early twenties was really hard. I was single, I was wanted to look good. I wanted to wear dresses and skirts in the summer. I wanted to wear ridiculously uncomfortable shoes. But I didn’t. Instead for years I sweated it out on the rare occasions in the UK when we had hot summer weather. Preferring to wear my jeans and trainers. Not wanting to inflict my ‘hideous’ leg on the world. I remember once when I was living in London, daring to go to the supermarket on a baking hot day in just a short denim skirt and flip flops. I got stopped in the shop and asked ‘Do you realise you foot and ankle are very swollen?’. What a question?! I remember feeling my eye prick with tears and my cheeks turn hot and red. I mumbled something about having sprained my ankle. I felt so ashamed. It was years before I ‘dared to bare’ again.

I used to dread having to break the news to any new boyfriends I may have had. Having to pluck up the courage to tell them that lurking underneath my jeans was a very unsexy compression stocking. It knocked my confidence hugely.

A particular low point for me was when I decided to move from London to Edinburgh. In London I was under the care of the Lymphedema clinic at St George’s Hospital – one of the most progressive and pioneering lymphedema clinics in the UK. When I moved to Edinburgh I didn’t qualify for the hospital lymphedema service because it was solely for people with secondary lymphedema. It was another five years before funding was made available for a physio lead clinic in the city for people with Primary Lymphedema. I really struggled during the vacuum years of no support. I felt distraught at seeing all the progress I had made in London disappear. I spent fortunes on private prescriptions for compression garments. I have been accessing the physio lead clinic now since 2008 and they are fabulous. They even managed to find me an amazing pair of compression thigh highs to wear on my wedding day, a task they took on with gusto!

I have often wondered how different I might be if lymphedema hadn’t decided to visit me that day on the river 22 years ago. I’d be lying if I said it hadn’t had impacted on me but as I get older – I turned 40 in April 2017 – I find I care less what others think.

I think on some level I have always been ‘Chronically Motivated’. Whilst there have been days where having lymphedema has really got to me, ultimately I haven’t let it rule my life. I have remained active and fit – I cycled to work for years, I have run regularly for the past fifteen years completing numerous half marathons and one of my life goals remains to run a full marathon. Lymphedema will not stop me.

I think having my three children had a huge impact on me. Although three back to back pregnancies undeniably made my lymphedema worse, they showed me what my body is capable of – that I could grow three incredible human beings in my body and push them out of it still blows my mind and probably always will. Pregnancy and birth proved to me how strong my body is. That lymphedema will not ultimately hold me back.

My children have also played a huge part in me being chronically motivated. They love me unconditionally. They don’t care that I have sausage toes, no visible ankle bone or a fat knee. Sometimes they watch me putting my compression stockings on and I try to explain what is wrong but they don’t see my leg like I do. They just see their mummy who they love. They have given me the confidence to go our on holiday or on a sunny day in a pair of shorts and my compression stocking. To wear a pair of flip flops and my toe caps. If people ask questions don’t make up a story about a sprained ankle, just tell them the truth.

I hope I can inspire others to be chronically motivated by showing them that life goes on. That you can have three children, help run a farm and have a super busy life and still have lymphedema. That you can still wear skinny jeans and killer ankle boots – you just need to hunt down the right brands! That it’s ok to go out in a beautiful dress with you Mediven Plus knee high on. That you don’t need to hide your lymphedema from the world, that it’s part of you. It’s what makes you unique and that you should embrace it.

To anyone struggling to live with lymphedema I would say make sure you are getting the best care you can. Speak to your GP and find out what support is available in your area. Reach out online for other people living with lymphedema. I have only very recently discovered the amazing Lymphie community on Instagram and have found it such a comfort to see other people like me. Try not to let your lymphedema define you. You are so much more than your limbs.

Malleotrain ankle support.

The top three things I can’t live without for my lymphedema are:

  1. My Compression stockings – I have worn Mediven Plus for years but have had to face up to the fact that they don’t really cut the mustard anymore and am awaiting the arrival of a custom made Sigvaris closed toe thigh length.
  2. MalleoTrain Ankle Support – I discovered this in March 2017 through the Instragram feed of the inspiring @Lymphosaurus_Rex. I honestly couldn’t believe my eyes the first time I took it off. The difference it made to my leg was unbelievable. In six short weeks it has become indispensable
  3. Fiona, the amazing physio at the NHS Lothian Lymphedema Service. She is supportive, knowledgeable, honest and has a great sense of humour. I couldn’t manage my leg without her.

My top lymphedema tips are:

  1. Exercise – when I was first diagnosed I was told not to do any impact exercise. I ignored this and chose to run. I know for some people it doesn’t work but for me it’s amazing. It helps get the fluid pumping in my leg and it gives me headspace and keeps me upbeat and focused.
  2. Moisturise – I have always been really careful to look after my skin and amazingly have so far avoided cellulitis. I have always used the same moisturiser on my leg – Palmer’s Cocoa Butter, inexpensive but fantastic!

Contact Us

Chronically Motivated Monaco, 98000. chronicallymotivated@gmail.com

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