Postcards From My Kitchen Table

This is an edited version of an article posted on http://www.chronicallymotivated.org a support and lifestyle platform for people living the best life they can with lymphoedema. 

 

I have Primary Lymphoedema in my left leg – stretching from the tips of my little sausage toes, right up to my thigh. It began one gorgeously sunny summer afternoon whilst out water-skiing with a bunch of friends on the River Bann in Northern Ireland. I got bitten by a horse fly on my thigh. I was eighteen years old.

I’ve always reacted badly to insect bites but this was different. The area around the bite rapidly became hot and sore but more unusually, my ankle became horribly swollen.

I had just started a holiday job as a waitress to save money before 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 was no longer visable 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 healed but the swelling in my lower limb remained. Over the course of the next two years I visited my GP surgery on numerous occasions. No doctor seemed particularly bothered by what I showed them and all continued to give me diuretics. I wish I had been more pushy and demanded more answers. I believed the doctors knew best and that I was most likely making a fuss about nothing.

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 was wrong. From what Dad had told his friend he was sure I had lymphoedema and asked me to come and see him. When he saw my leg and the degree of swelling compared to the other limb, he was he was confident to give me an official diagnosis.

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

Whilst I am aqutely aware that there are many worse things in the world to be diagnosed with, I still found the diagnosis of lymphoedema really difficult. We live in a judgemental 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 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 in jeans and trainers on the rare occasions in the UK when we had hot summer weather, terrified 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 if I was aware that my foot and ankle were swollen. I remember feeling my eyes prick with tears and my cheeks burn red with shame. I mumbled something about having sprained my ankle. It was years before I ‘dared to bare’ again.

I used to dread having to break the news to any new boyfriend. Having to pluck up the courage to tell them that lurking underneath my jeans was a very unsexy compression stocking was not something I relished. It knocked my confidence hugely.

A particular low point was when I moved from London to Edinburgh. In London I was under the care of the lymphoedema clinic at St George’s Hospital – one of the most progressive and pioneering lymphoedema clinics in the world. When I moved to Edinburgh I didn’t qualify for the hospital lymphoedema service because it was solely for people with secondary lymphoedema – a condition caused by the removal of lymph nodes during treatment for cancer.

It was another five years before funding was made available for a physiotherapy led clinic in the city for people with primary lymphoedema. 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 physiotherapy led clinic now since 2008 and they are fabulous. They even managed to find me an amazing pair of compression stockings to wear on my wedding day, a task they took on with gusto!

I have often wondered how different I might be if lymphoedema 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.

Whilst there have been days when having lymphoedema 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 and currently run three times a week. Lymphoedema will not stop me.

Having my three children has very much changed how I view my life. Although three back to back pregnancies undeniably made my lymphoedema worse, it showed me what my body is capable of – that I could grow three incredible human beings inside it 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 lymphoedema will not hold me back.

My children love me unconditionally. They don’t care that I have webbed sausage toes, no visible ankle bone or a fat knee. Sometimes they watch me putting my compression stockings on 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 out 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 now I don’t make up a story about a sprained ankle, I just tell them the truth.

My children have taught me that I don’t need to hide my lymphoedema from the world, that it’s part of me. It’s what makes me unique and that I should embrace it because it isn’t going anywhere.

To anyone struggling to live with lymphoedema 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 lymphoedema. I have only very recently discovered the amazing ‘lymphie’ community on Instagram and have found it such a comfort to connect with other people like me. Try not to let your lymphoedema define you. You are so much more than your limbs.