Laura Pell, 34 from Kingsthorpe, Northants is suffering from a condition that has turned her into a human waterbed…
Driving down a country lane with my boyfriend, Mark Appleby, 30, I winced as the car went over a bump in the road.
“Ooh be careful, Mark,” I said. “I can’t take the pain in my legs.”
Mark hit the brakes and I could feel the water in my legs pooling at the bottom and in my feet.
“Sorry babes,” he said. “Do you want me to turn around?”
As much I was grateful to be out of the house, the discomfort I felt as the car rolled over every little stone or hole in the road was just too much bear.
“I think we better had,” I said wearily.
For the past 10 months I had slowly been turning into a human waterbed.
It sounds funny to say, but if I didn’t laugh about it, long and hard, I would cry myself to sleep each night.
When I say a human waterbed, what I mean to say is that I’ve been slowly retaining water in my feet and ankles.
Over the months this has spread to my thighs and hips, then to my stomach, by back and arms.
Sometimes, when I wake up in the morning, my eyes are so puffed up with the fluid built up behind them that I find it difficult to see.
It takes few hours of moving around – something I can’t really do that much of anymore – for the fluid to drain from my face, and down my body.
Even more shocking is that I’ve ballooned in weight.
Before this started, just 10 months ago, I was weighed just nine stone.
Now when I weigh myself, if I am brave enough to look, I am 18 stone plus.
Life wasn’t always like this.
I grew up with my mum and little brother in Kingsthorpe, Northampton, where I still live.
At school I was always playing catch up because I was off sick most of the time.
No one ever knew what was wrong with me, but if there was a bug or illness going around, I was sure to get it.
“That school of yours is like a casserole of germs,” mum said.
She was right. I would catch everything: colds, flues, chest infections, measles, you name it.
My luck with illnesses didn’t end there though.
At the age of 17, while I was at college studying the performing arts, I came down with TB.
Working part-time as a cleaner at a hospital I began to feel feverish and cold. I started having night sweats, and difficulty breathing which ended up as a chest infection.
I went to the hospital and they were so shocked by my temperature they put me in isolation immediately. They said I had TB.
Lying in my bed on the ward, with the morgue on one side and the paediatrics ward on the other, I felt in the middle of life and death.
Thankfully, with the help of my family and friends, I pulled through. Though, I was still a very sickly young girl.
I struggled to get back into college but every time I went to lectures or seminars I would get sick with one bug or another, and I would find myself bed bound for a month.
“We can give you extensions,” my lecturer said. “You’ve just got to keep trying.”
But it was no use. I got so far behind, and my class mates were so far advanced that I decided to drop out altogether. I was devastated.
In 1999 I got a job at a call centre and met Tim, 38.
We fell in love almost immediately, but again, my illness took over and within a year of working there I was let go.
I had been to the doctors tens, if not hundreds of times, begging them to diagnose me with something, just so I’d know what was wrong with me.
But doctors were at a loss. I was given a nebuliser and an asthma inhaler, but nothing that would help in the long term. In my despair, they signed me off work altogether.
But this put pressure on my relationship with Tim.
By 2009 we were married, but our relationship had become more like carer and patient than husband and wife.
”I think it’s time you went home,” he would say in front of my friends. “You don’t look so well.”
It was like he knew what was best for me. It was so embarrassing.
In the end, we decided to end it. There was little love lost – if anything, I felt free of my own burden.
The only thing that helped me through the divorce were my two Jack Russells, Milly and Sam.
“What would I do without you two?” I said, as I looked around at the empty house I was now in.
But it wasn’t empty for long. Despite my illness, I was still very active and still wanted to meet someone.
Logging on to Plenty of Fish in June 2013, I updated my profile and crossed my fingers and waited for the dates to drop in.
But as far as dates went, I think some of them were more ill than me.
One bloke actually turned up to the restaurant with a suitcase, saying he needed somewhere to stay!
Another looked nothing like his profile picture.
Just as I was about to give up, Mark messaged me.
We met on a Thursday and we got on so well we saw each other on the Friday, the Saturday and even the Sunday.
But on the Sunday, Mark noticed something about me.
“Is everything all right, Laura?” he asked. “You’re sweating an awful lot.”
Mortified, and at the same time used to the maladies I was plagued with, I set about explaining to Mark what I had to go through on a daily basis.
And to my surprise he didn’t run a mile. Instead, it made our budding relationship even stronger.
But in November of that same year, our relationship was to face another test, as my illness took a turn for the worse.
“Mark,” I yelled as tried in vain to yank my favourite leather boots on. “My boots! They won’t fit”
He popped his head into the hallway. “What do you mean they won’t fit? You were wearing them yesterday.”
“I know,” I said. “But look.” I pushed down on the skin of my foot and it didn’t bounce back immediately. Instead it stayed put.
I tried the other foot and the same thing happened.
“So to add to the list of things wrong with me, I’ve got to add fat feet to it now have I?” I laughed with Mark.
But inside I was exhausted. I slipped on my comfy flats and tried my best to get on with my day.
But a few weeks later I noticed it wasn’t just my feet that were swollen – my calves and thighs were getting thick too. The my stomach, back, arms and face.
I could almost feel the water sloshing around in my legs – they were so tight and swollen, and they were turning pink with sores and tenderness.
“I’m turning into Violet from Willy Wonka,” I said. “Mark, you’re going to have send me to the juicing room.”
A month or two went by and my entire body had become swollen and hot. I was turning into a human water bottle.
I couldn’t walk too far – not even to walk Sam and Milly around the garden. And I couldn’t sit for long either.
When I sit down for too long the water drains into my feet and the pain is unbearable.
But I can’t stand for too long either. And when I go to bed, I wake up with so much fluid behind my eyes that it takes a few hours for me to see properly again.
Not only that, but my body had become intolerably heavy. And not the kind of wobbly, flabby heavy that fat people have.
My body was taught and rigid – my skin felt like elastic, except when I pushed it in and it stayed pitted.
And I looked awful too. I couldn’t look at myself in the mirror anymore. And when I did catch a glimpse, I didn’t recognise the woman looking back.
Before, I was ill but I was fit and healthy-looking and had a nice slim body. The person in the mirror was fat and bloated, and looked hideously unwell. My skin was literally stretched to the limit.
“You need to go to the doctors and get this sorted out,” Mark said. “Once and for all.”
But at the clinic, the doctors just looked at me with baffled expressions.
After running lots of tests they had nothing but bad news. “I’m afraid we haven’t got a clue what’s wrong with you, Ms Pell.”
“You certainly have a severe oedema – a retention of bodily fluid – but we just don’t know why or what’s causing it.”
My endocrinologist said the same.
“I don’t blame you for not wanting to move around too much, Laura. But if we drain you, it will just come back even worse.”
Every doctor I’ve seen has said the same thing: I’m a ‘complicated case’.
But I’ve known that all my life. I just want someone who knows how to sort this out, before it’s too late.
All in all I’ve put on over nine stone in weight – just in fluid retention.
I’ve gone from a size 10 to a size 22 since November 2013.
People look at me in the street and I know they’re thinking I must have just let myself go and eaten too much, but I actually eat less now than I did before I had this condition.
I almost never leave the house now though. Not even on country drives with Mark. The pain is too much.
We struggle to do coupley things like go to the cinema, and out for meals together.
I can’t even put the bins out!
But he’s been a wonderful help. His poor father died of something very similar and I know he’s worried I’m going the same way.
“You’re perfect,” he said to me one night. “If only we could get this sorted, life would be wonderful.”
I’ve been prescribed powerful diuretics and steroids in an attempt to drain the excess fluid from my body, but everything so far has failed.
I’m planning to see a neurologist at a private clinic in Manchester in a bid to find a cure.
Once that happens, I can go to the USA where I’ve read about this pioneering gene therapy treatment…
But at the moment, it’s just desperation.
If it wasn’t for Mark and the dogs, I don’t know where I’d be.