Live your best life with Lymphedema.

Ashley Lloyd-Jones

“I don’t, and wont ever let my condition hold me back, or let it stop me from fulfilling my potential. Lymphoedema is part of me, and that will never change.” – Ashley.

My name is Ashley, I’m 26 years old, and I live in Worcester, U.K. I was brought up in Wales, in a small village called Pontrhydfendigaid (Yep, that is an actual name of a village in Wales). I’m just a regular guy who plays video games, loves comics, and on the odd occasion does some exercise..

I’ve had Lymphoedema in my left arm since birth, so nearly 27 years. I’ve never had a “normal” left arm, so I wouldn’t know what life is like without having lymphoedema. Growing up with lymphoedema was quite a challenge, I always knew I was different to other children, and children can be quite mean (and so can adults).

When I was young the only specialist in Lymphoedema were based in London, so my parents would have to do the 5 hour drive, for the specialists to poke and prod to see if my arm was getting any better or worse. The recommended treatments at the time were to have my arm hung up whilst I slept, having a pump, and wearing a hideous “skin” coloured glove (my mum used to colour them in different colours to try and make me wear them, it didn’t work).

So for quite a few years, I didn’t wear any garments at all – up until I was around 16 when I was feeling so low that I decided that I had to do something about it, as it was starting to effect my mental health.  My attitude towards lymphoedema was always negative, that it was the worst thing in the world and knowing that it was something that I was going to have to struggle with for the rest of my life was very depressing.

As you can imagine its very hard to hide that you have lymphoedema in your arm, but as the worst effected area is my hand, so throughout school I just used to keep my hands in my pockets so nobody would stare.

Until I used Instagram to search for people with lymphoedema, I had never seen anyone in my age group that had the condition. So for many years I felt very alone, because how can someone understand what you are going through unless they have been through it themselves. No matter how many people said they didn’t notice there was something wrong with me, I never believed it.

If I’m completely honest I am probably not as careful as I should be with my arm, but that’s mainly because I don’t let it stop me from doing anything that I want to do (I.e; Mountain biking, skateboarding, inline skating, rugby, and so on…)

I’m not quite sure when my turning point in my life was, but I know I don’t hate my condition anymore. Because without this condition I wouldn’t be the person I am today, and with the continued support of my amazing girlfriend, family, and friends I’ll never hate lymphoedema again.

How do I stay chronically motivated?
I stay motivated by reminding myself of how far I have come. From the shy, self-conscious boy who felt alone, to the confident man I have become today. I don’t, and wont ever let my condition hold me back, or let if stop me from fulfilling my potential. Lymphoedema is part of me, and that will never change. I’d rather have a chubby arm, than no arm at all.

Words of Advice
My advice to people living with lymphoedema and struggling, is to remember you are not alone. There are a lot of people around you that will support you when you are at your lowest. Don’t be scared about opening up about it, and how you feel. Once you accept that there is no cure, then life becomes a lot easier. People love you for the way you are, and they wouldn’t want to change you.

Lymphoedema Items I use, and tips

Obviously the main things I use constantly are the Garments, Median harmony (sleeve) Juzo (gloves). Juzo are by far the best quality gloves that I have used, after using many that wouldnt keep elasticity.

Also I make sure I moisturise (when I remember..) for which I use Dermol 500.

My biggest tip would be to make sure you exercise, and control your weight. As since I have become a postman and now have to walk many miles everyday, I’ve found the swelling in my arm has significantly reduced in size.

“Be yourself; everyone else is already taken.” – Oscar Wilde.

You can find Ashley here on Instagram: @ash.lloydjones

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