I Have Lymphoedema – Life Update

I Have Lymphoedema – Life Update

I Have Lymphoedema – Life Update

Hello, there. I have to apologise once again for my absence. I don’t usually write posts like this but I think it’s time I make this blog a bit more about me, and that means writing some posts like this. It’s been a tough few months for me. I’m not going to lie about it or sugar coat it. I have been the lowest I have ever been. All because of my anxiety around a condition I have called lymphoedema.

If you’re just here for beauty posts and reviews, it may be best for you to skip this one (I don’t mind).

I’ve barely mentioned this condition to anyone apart from my parents and a couple of friends in passing. It’s a big word, but don’t worry. It’s not life threatening or even that serious, although some side effects from it could be. Lymph (a clear fluid that is basically made up of waste products) flows through lymph vessels in your body that filter it out and away (to the kidneys, I believe). For me, in my left leg, these don’t work properly and result in swelling of my foot, ankle and up my leg to my knee. A lot of the time I feel stupid for being so anxious about it because it is quite mild, but that’s just how I am.

I was diagnosed three years ago after around 18 months of persistent swelling in my foot. I thought after a GP visit, an ER visit, another GP visit, an ultrasound and an X-Ray they would have some idea what was happening. It took a while but eventually I was called into a room, told by the doctor that I had lymphoedema and that it was incurable but manageable. I was 18. No one told me that this condition is often progressive, disfiguring, tiring and, for me right now, almost emotionally impossible to deal with.

Mainly the treatment revolves around wearing compression garments, light massage, skincare (so that you don’t develop cellulitis, which can be life threatening), diet (weight maintenance or loss) and exercise (to try and pump the fluid out, as the lymph system doesn’t have a pump like the heart). Until August, I never thought about my lymphoedema. I know now that I was in extreme denial. I didn’t wear my compression garments (i.e. the absolute worst thing to do) and I was gaining weight from the stress of graduating from university. Generally, just not looking after myself. Something clicked. I don’t know what it was, or why. All of a sudden I had this compelling feeling to actually educate myself about what this swelling in my leg is. I’m glad I did, but I also regret it absolutely.

I saw terrifying pictures (surprise surprise, this is the internet) and learned that there are clear stages to this condition (the worst ending in the development of elephantitis). From other people’s stories from Facebook support groups, some amazing blogs and people on Instagram, I learned that in some cases, it gets worse, regardless of complying with treatment. I am the world number one in worrying and thinking of the worst case scenario. This is where the anxiety kicks in. This is where I get to the point where I wake up crying, try to hold myself together at work, cry in the car on the way home from work, and (you guessed it) basically break down until I fall asleep.

I don’t want it to get worse.

I don’t want it to spread to other parts of my body.

I don’t want to be unable to walk by the time I’m 70.

I don’t want to be unable to wear shoes, or find clothes to fit.

How am I ever going to find anyone that finds me attractive?

If I do, what if they think it’s too much, or I get so bad they’re just repulsed by me and leave?

I don’t want to get pregnant because I’m scared it will get worse.

I don’t want to have children, only for them to develop lymphoedema, too.

I don’t want to live a life scared that I’m going to get a bite, scrape or cut that will end in cellulitis.

How am I going to be able to put on compression and look after myself when I’m elderly?

If I can’t cope emotionally now, there’s no way I’ll be able to if it does get worse.

I just hate that everything is conditional. There is no black and white. It might get worse and it might not. All I know is that I am still in this place. I’m just so sad, frustrated and embarrassed. I’m embarrassed mainly because I know that this will not kill me. I have primary lymphoedema, which means I was born with it. For many people with the condition, that’s not the case. They develop it after lymph node removal and radiation from cancer treatment. Yeah, Emma. People that ARE dying. That COULD die. They are FIGHTING. And yet, here I am, being pretty pathetic. It sounds very ungrateful and shallow, doesn’t it? Welcome to my overthinking mind.

I wanted to make this post, to perhaps help me get over this period. But also, to raise awareness of lymphoedema. Not many people have heard of it. I hadn’t before I was diagnosed. Approximately 140 million people worldwide suffer from it. That’s a lot of people. Too many for there still to be no understanding around it and no cure. I hope I might see one in my lifetime. Who knows?

If you have LE and are reading this post, here are some great blogs with way more actually helpful information:

LymphFashion

The Lymphie Life

Lymphie Strong

This post inspired by a post on Graceful Lymphedema titled ‘What If?’

 

I hope this post wasn’t too much for you, and that you’ll be back to a happier post. Until next time,

 

5 Comments
  • Mary says:

    Emma you are brave & beautiful. I love your honesty in this blog and can relate to how you feel.

    I also have lymphodema in both legs predominantly worse in left leg. I know the struggles you are going through. My arritude is that so long as I can keep going I will. It’s a tough battle fighting this disease but you can do it xx

  • Tracy Farmer says:

    Hi Violet. I understand completely how low the condition can make you feel. I’m 53 years old, and have had it in my left leg for the last 20years. It started as just a swollen ankle, and the doctor told me it was just my job as a hairdresser. WrONG! One year later after bugging her to death and eventually having all the tests, they come up with the word Lymphedema . Tell me it’s incurable and just maintain it with compression, MLD, diet … Blah blah blah! Gradually over the years I manage to keep it to a relatively manageable level by wearing my granny stocking all day long. I’ve always worked, always kept my weight down, looked after my skin etc. such a thankless job though, because for some reason , after all these years, it has decided to take over my whole leg! I can’t get any of my shoes on. I can’t get any of my jeans on. My right leg fits my size 8 clothes , my left leg needs a size 16! How is that gonna work then?? I’ve had to buy loads of trainers or any flat lace up footwear that I can open up the laces on the left shoe , just so I can get the damn thing on! I too, have been feeling very low about my condition. The thought that my life could become so impaired by this condition as I get older is thoroughly depressing . I get cross with myself because I know there are people far worse off than me and I should just stop whinging about it, but it’s so hard, when it’s there every minute of every day . I’m too young to feel this old . We all need to stick together and support each other , because unless you have to live with it, it can seem quite trivial to others. We know otherwise! xx Tracy

    • violetelm says:

      Thank you for sharing your story, Tracy. I’m so sorry to hear. Have you sought any reduction treatment that might help? I completely understand, but your feelings are valid and you’re entitled to have them. I hope you are in a better place soon.

      Emma x

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Emma Louise McCaw

22-year-old English graduate and part-time beauty & lifestyle blogger from Northern Ireland. I spend my time reviewing makeup, thinking about makeup, applying makeup... and drinking more coffee than is probably healthy.
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