Blog Living with Lymphoedema by Kate Ibbeson

Living with Lymphoedema by Kate Ibbeson

It was something very simple that first alerted me to the fact that my left leg was swollen. I had some knee length boots and one day the left leg simply didn’t want to zip up. The right one had gone on fine as usual, but the left leg seemed bigger somehow and that boot’s zip just wasn’t going to close. It seemed very, very strange. Whilst I felt a bit of a fraud as I wasn’t feeling any discomfort or ill health, I decided to go to see my GP. We talked it over and thought that I should just see how things went for a while, but after a few visits with the leg still being swollen, I was referred to a vascular surgeon to see what was going on.

During the time waiting for my hospital appointment I used to peer down at my legs. The left leg did seem bigger than the right one, didn’t it? Some days I used to think I must be going a bit mad. People didn’t have different sized legs suddenly for no reason, did they? After a consultation with the vascular surgeon and other appointments for scans, I was diagnosed with lymphoedema. It was only very mild and although I was starting to have some discomfort from the swelling, I was advised that I would only need to wear support tights to keep the swelling at bay. The vascular surgeon also sent me some information from the Lymphoedema Support Network, which included advice about how to help manage the condition.

I was diagnosed in the summer of 1998 at the age of 27. Even though I religiously wore my support tights every day, I would often return home from my desk job in the evening feeling the discomfort of my swollen left leg. If the weather was hot, or I had been sitting or standing for long periods of time, I would be feeling miserable by the evening, with a very uncomfortable leg. This was the case until rather dramatically in 2003 I broke my left ankle, which was unfortunately in the leg with lymphoedema. The break was bad enough to need surgery to pin my ankle together again. During the months after the operation my leg was even more swollen and the lymphoedema appeared to have got worse. Fortunately for me I mentioned this to the physiotherapist who was helping me to get my ankle working again, and she got in touch with another physio who was specialising in lymphoedema care. On meeting the specialist physio, she told me that she was going on to set up a dedicated lymphoedema service, the first in the area. I would eventually be one of the lymphoedema clinic’s first patients, which really helped me make the changes I need to get the swelling under control.

What particularly worked for me in terms of managing my lymphoedema was getting a proper compression garment. At first I needed a made to measure garment, but after six months I’d lost enough volume in my leg to fit in an “off the shelf” stocking. I wear a compression stocking every day and whilst I sometimes have days where I am uncomfortable or my leg is swollen, it’s nothing like the discomfort I had when I was first diagnosed. I feel it is a vital part of trying to keep on top of the swelling.

I consider myself to be one of the lucky ones. Yes, I have lymphoedema, but it’s currently under control and I have found the right compression garment to help. I also have access to a specialist service for advice and support, which for some people living with lymphodema is a huge part of the battle. I personally feel that the biggest step is coming to terms with the fact that lymphoedema is a life-long condition and that it is something an individual needs to manage actively to have the best outcome. Sometimes it’s really hard to get your head round this fact! You might be lucky enough to be able to control the swelling with a compression garment, or you might need manual lymphatic drainage or bandaging, but there are things out there to help. Once you develop lymphoedema, it’s not going to go away, but there are many things you can do to help you live with the condition. Find a garment that works for you, look after your skin and get as much advice and support as you can. It’s not always easy and there will be days that you will be fed up with the whole thing, but you can learn to live with lymphodema.

The photograph accompanying this post was taken for the 2011 calendar produced to raise funds for the Lymphoedema Support Network (LSN). I am a member of the Facebook group “Lymphoedema is part of who I am”, which was established by Lindsey Summerhill to provide an online community for people living with lymphoedema. It’s such a great way to find support from others with the condition. Another of the group’s members, Donna Hughes, came up with the idea of a fundraising calendar for the LSN and organised some of us to come together to be photographed. The calendar was a great way to raise funds and awareness for the LSN, and to show a range of people who actively strive to manage their lymphoedema, all of whom were wearing compression garments. As you can see wearing my compression stocking means I can still get into heels – there is life after lymphoedema!