Live your best life with Lymphedema.

Sophie Tilley

I came to the realisation about how much I had in life and what I had achieved, rather than focussing on a very real, but ultimately manageable condition. – Sophie Tilley.

My name is Sophie I’m 26 years old and was brought up in Bromsgrove, UK. I love – food (cooking and of course eating it), my family, my friends and watching a good old murder documentary. At first I come across as quite shy and retiring, however once I get to know people there is literally no shutting me up. I have now been living in Australia for the last three years. I travelled across parts of this beautiful country (mainly having great fun), before settling down and making my home in Sydney where I work in IT recruitment the same as I was doing back in the UK.

I guess from the age of 13 I’ve known that my lower legs were bigger than they should have been and this always caused me to be self-conscious about them. They were always swollen and painful, but I put this down to the amount of sport I played at the time, netball, football, running, and horse riding. I thought I’d pulled a few muscles or sprained something, but they started getting much worse.

I started wearing clothes that wouldn’t reveal my legs, I was so embarrassed; they were so chubby and ugly. After a lot of toing and froing, being passed around various doctors for a multitude of tests the doctors thought I had Lupus, something that I had never heard of. I was seen by a few more specialists who finally diagnosed me with LE in my lower legs. I was diagnosed at the age of 16, in actual fact on my 16th birthday, happy birthday to me, not!

At the time I didn’t understand what I had and why I had it; I was so upset and negative about the whole thing and didn’t really know how to deal with it. What would people say about me? Would people always stare? Would people still like me? Can people catch it off me?

At that age I didn’t think I needed to adapt my life style, I was a teenager after all. I continued to shave my legs despite my mum spending a small fortune on epilators, creams and equipment. I still ate all the wrong foods and started smoking and drinking, pretty much what everyone else does at this age. No matter how many times I got told I was beautiful, I hated my legs. I started to attend regular check-ups and had lymphatic drainage massages at St Giles Hospice in Lichfield, UK. I can’t stress enough how amazing these guys were, they were so positive and supportive. They really helped me understand LE and how I could live with it.

At 18 I wore lots of makeup and got dressed up like girls do at that age, but my legs, no matter how much fake tan I put on them (which didn’t help), were still a problem for me. I wanted to wear skirts/ dresses but thought people would stare. In order to help me with my confidence I relied on alcohol to make me forget about my legs being on show. This was just plain silly because I suffered doubly the next day with painful legs and a massive hangover.

I’d be lying if I said I don’t still struggle from time to time. I live in a country where it’s hot pretty much all of the time, some days my ankles are so uncomfortable and painful I don’t want to get out of bed, but I do. I’ve had the dreaded cellulitis roughly 8 times now, 3 of those times I have been admitted to hospital. On the other occasions the anti-biotics kicked in straight away, possibly because I could now pick up on the warning signs early on, cracked skin, red skin, warm to touch etc.

The turning point for me was when I went travelling to Thailand. I met some amazing people and did some eye opening things. I taught children English, visited children’s homes and did the typical stuff you do when travelling around Thailand. Seeing those children who had nothing made me realise that my life with LE really wasn’t that bad. I may have chubby ankles and not be able get my feet in a pair of shoes that I really like but I had possessions. I also have a family that have always supported me through everything and I was healthy. I came to the realisation about how much I had in life and what I had achieved, rather than focussing on a very real, but ultimately manageable condition.

I am Chronically Motivated today because I am living my dream in Sydney, something I made happen– I mean who wouldn’t love living somewhere that is so warm and beautiful, a stone’s throw from Bondi Beach. I’ve always been told ‘Life starts at the end of your comfort zone’ and this is so true!! I have now learnt to not let LE stop me from doing anything I want to do. Since being diagnosed, I have achieved so much – I have travelled to some amazing countries, gone on girl’s holidays, and met the love of my life. Since moving to Australia I have done 2 skydives, a bungee jump, extreme water rafting, paragliding, and scuba diving – I even got my chubby foot in the flipper! I also have been wake boarding and lots of other awesome stuff. This year I’m just waiting for a caged shark dive I have planned.

At 16 there was nothing like Chronically Motivated for me to become involved with. I would have done anything to talk and ask questions of people going through the same as me. I urge you all to read my own story, as well as the other stories that you will find. Remember, you aren’t going through this alone.

It’s easier said than done but honestly don’t let it get you down, you are beautiful inside and OUT!!!!! Don’t let anyone tell you any different, who cares if people look! You think people are staring at your affected limbs, when in fact they aren’t. They will be looking at your eyes, your hair, your face, clothing or your figure. You just don’t notice because all you can focus on are the affected limbs.

Top three things I can’t live without: Compression stockings, Cooling Gel (Antistax) & my exercise bike.

My best Lymphedema tips:

  1. If you smoke, stop!!!! I smoked for 10 years and always thought the doctors were just saying quit smoking for obvious reasons. Five months ago I stopped, and I cannot explain to you how different my legs have looked since I gave up.
  2. Try and sleep with you LE limb elevated – I put books under the mattress so my leg is elevated at night.
  3. Try and avoid, or at least minimalize your intake of processed, salty, fatty, deep fried food.

 

Where to find Sophie:

Instagram: @sophie_tilley

Contact Us

Chronically Motivated Monaco, 98000. chronicallymotivated@gmail.com

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