LPLD is a ‘secret’ problem; I am not sick to look at, and it is controlled simply by a diet. But, there is no doubt that it is a life threatening, life changing black cloud in my life.
I went to hospital with suspected leukaemia. After that, when the diagnosis was made (aged 2 ½), it came as somewhat of a relief for my parents. But it is amazing the profound effect that something so basic as a diet can have. It reaches into all aspects of a life.
As a child in the 80s, there was no clear labelling of food. My mother had a list: allowed and not allowed. I could not have chocolate, cake or biscuits. Which made social occasions hard. I reached teenagerdom and couldn’t partake in fast food outings. No pizza. No Chinese. No fish and chips. Not even popcorn at the movies. Adulthood came, and I couldn’t drink on a night out and couldn’t get taken out for dinner on dates.
My childhood was an endless cycle of the same simple meals over and again. As an adult, I became obsessed with finding new meals to cook. Every day I have to cook a proper meal or have something prepared. There is no fast low-fat food. My grocery bills are ridiculous as ‘healthy’ food is generally at a premium.
The symptoms of my condition are abdominal pain, ‘swelling’ of organs, deep tiredness and frequent trips to the bathroom. I have been lucky; I haven’t had pancreatitis. But my pancreas is under constant stress and is high-risk for diabetes. A lot of us get it. I cannot imagine how difficult it will be to manage my fat AND my sugar intake, keep snacking to maintain blood sugar levels and not just go insane.
And the cure comes with its own symptoms. Apart from the social and economic ramifications, I do not intake enough energy. I am still almost always tired. I get ‘brain fog’ due to the lack of necessary nutrients to brain cells. I am susceptible to skin complaints.
I spent years not sticking to my diet well. I had got used to the pain and accepted it as part of life. It took a miscarriage for me to find out how much my condition has affected me and how much I could improve my lot.
Now, I am much better. But I am an abstaining addict. It is hard not to just open the fridge and have a chunk of cheese. I have two kids and I am currently resisting the call of three kinds of chocolate bars, a pack of sausage rolls, bacon and ice cream from my fridge freezer. Low-fat yoghurt just doesn’t do the same thing…. It is a war, but most days I win the battle. Then, I am free from pain, able to travel without worrying if there is a bathroom within reach. I’m tired, I’m hungry, but I’m healthy. I’m riding the demon and I’ve got pretty good at it!