The restrictions that LPLD – especially with diabetes – put on what’s possible for me to eat make it almost impossible to find something I can eat spontaneously. Eating out becomes a tiresome process of ensuring that whoever is catering will provide me with something suitable. Often this can mean something very basic and not particularly appealing. Sometimes people take it on as a challenge to make me something delicious – but then I feel I have to be grateful for their effort! It all adds up to making eating out a stressful experience. If I’ve not been able to organise something in advance then I have to go hungry. Not great if you have diabetes. It is difficult to walk into a café or a restaurant, or a local shop and find something suitable, tasty and filling.
I carry food with me everywhere I go and try to make sure I’ve eaten at home so I don’t have to worry about eating out. If I find a restaurant where the is something I can eat (a few sushi toppings for instance) I tend to stick with what I know as it’s least stressful. It means I don’t have pain, but it’s boring!
LPLD and diabetes together mean that the range of food that I can eat is ridiculously limited. I feel excluded from any conversation about food unless I want to do the big explanation about LPLD, which usually I don’t. It’s surprising how many conversations about food happen in everyday life. At least in mine they do.
I have three children. I wasn’t initially aware that I shouldn’t breast feed as my milk is not nutritionally complete. I was quite challenged when given that knowledge. My pregnancies got progressively more difficult having developed gestational diabetes in the sixth month with my second child and having diabetes from the outset with my third. This meant insulin dependence and eating as close to zero fat that I could manage. I lost lots of weight, became exhausted, and almost inevitably, developed post-natal depression.
My children are all teenagers now, and carriers of the condition. We have discovered that one of them has high lipid levels. Whether that’s to do with what he eats (possible) or to genetic causes we have yet to find out. My daughters may face issues should they chose to have children.
Lack of understanding and awareness of this condition has increased the burden it has placed on my life. The founding of LPLD Alliance has been driven by a desire to make the lives of others with the condition, far less isolated and dominated by ill health as mine used to be.