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Primary & Secondary Lymphoedema Online & in the Community

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This is the first time I have ever fully told my Lymphie journey, and what a journey it's been.  My name is Lisa I am 36 years old and live in the beautiful city of Exeter in Devon. 

Up until I was 7 years old I was fit and healthy apart from a couple of broken bones, and normal childhood injuries. In 1988, I remember feeling extremely unwell with a pain in the left knee, this went on for days until my Mum took me to our local hospital. The next part becomes slightly blurry but spent 3 weeks in hospital as I had osteomyelitis in my knee. This was explained that it was septic arthritis, poison on the bone.

A few years passed & I seemed to pick up every infection going, I remember the sadness in my Mum's face each time I was admitted to hospital, I remember my older sister begging the doctors to stop me hurting.
I turned 14, I had a red swollen hand again admitted to hospital and was told it was tendonitis but unknown to me until years later it was recorded in my notes as cellulitis.

I turned 21, and on this day, I felt like I was coming down with the flu, then a rash appeared above my knee. Can you see a pattern?  It becomes a serious issue, every 7 years.  This turned out to be my first serious case of cellulitis. Again, I was treated by IV antibiotics. I still seemed to pick up every infection going from ear, throat and skin infections and nobody could tell me why?

In 2007 again I felt those flu like symptoms again, the shivering that immense headache, my body in pain and then hours later the rash had pickled the whole of my right food and leg. I remember the fear as I was told it was cellulitis again but this time I had septicemia and I wasn't in a good way and they were hoping it had been caught in time. Thankfully someone was looking down on me because thanks to all the wonderful doctors and specialists I came on and given long term antibiotics, to try and prevent this reoccurring.

Now this is where I say my journey really began. I will take you back to August 17th, 2011, I'd only been married just over 3 months and should have been enjoying being a newlywed.  On this day, I woke my husband in the early hours telling him I was freezing, he looked at me with what I now call the look. He knew straight away it was cellulitis. I left it all day (foolishly) and now know better. Until I started hallucinating.

I remember the confusion, the panic on everyone faces around me but if felt calm just wanted the headache to go and I wanted to get warm. This time it was back in the left leg I remember the swelling and saying it will go down, won't it? The doctor replying yes of course. You guessed I had septicaemia again and was moved to high dependency ward, talk of surgery and skin grafts. 

This was the worst time of my life. I was fighting to stay alive my organs were failing.  Again, the medical team were amazing. 4 months later and still off work, the swelling was still there, each day was a struggle without feeling so tired, no energy.  I had regular GP appointments and I remember saying when will my leg return to normal? And in a soft voice and sadness in his eyes he said it won't you have lymphoedema in both legs. I remember saying ok what's that? I don't really remember his full reply, apart from saying we will get you measured for some stockings. 

Two months later I was referred to the lymphoedema clinic run by three Macmillan nurses and I remember thinking why I don't have cancer?  I was measured and fitted with those brown stockings my granny stockings as I called them.  I took it all in my stride, but some days I felt confusion as I really didn't know what this diagnosis meant or what happened next and I still thought my leg would return to normal.  Today I wear compression wraps and I cannot go without or I swell beyond belief the limbs become heavy and hard. 

So, six years on I really didn't know the battle I was going to have. I developed severe eczema on both legs which leaves me prone to infections. Daily routines include running topical creams and moisturizers into my legs four times a day. Hospital appointments and GP appointments are constant. I'm now on a medication called methotrexate for my eczema which suppresses my already low immune system and have monthly blood tests. I have had over 20 different strains of cellulitis since I was 14 and because of getting septicaemia so many times it has damaged my lymph nodes in my groin which led to me being a two-legged Lymphie. 

Some days I do say why me? Then I'm like snap out of it be grateful you have your life, you still have two legs, and then I smile because I am lucky because I am here living my life.  I have dark days but without my husband and family I don't know where I'd be. People say I don't know how you do it, but they have got me through they have shared my journey with me.

Every day I learn something new about lymphoedema, at first, I felt ashamed and lost confidence but now I'm loud and proud and shout about my lymphoedema because we need to raise awareness about it. I always talk about it and make sure I educate people. I hope to anyone going through this realize you are not alone, we are a family.

 

 

 

 

 

Photographs are published with the permission of L-W-O member Lisa the first photograph with her Mum, the 2nd photograph of her legs and feet so that you can see the daily challenges that Lisa lives with and the third photograph of Lisa with her Husband. 

 

L-W-O © 2nd October 2017

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Thank you so much hugs to you too

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Oh Lisa
Your story is so much like mine, you have me in tears on the train home.
Stay strong sister, this is not an easy journey.
Marion

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