I’ve written about the Food Nazis several times before. Y’know, those people online who say that following this diet or that diet has helped them enormously and you can’t possibly want to improve your health because you’re still eating sugar/gluten/dairy/processed food/high histamine food (whatever that is) or “food with no nutritional value”. And whilst I know that eating healthily is vital to………..well, health…………I also know that when you’re chronically ill there are days when you’re lucky to have eaten at all let alone have spent hours preparing raw foods washed down with a green smoothie.
There is so much emphasis on food in the management of chronic conditions that’s it’s easy to feel really down on yourself if you’re not able to follow the legion of (often contradictory) dietary advice circulated online. But it’s important to remember that hardly any of this information has been backed up by research and even if it has been scientifically proven to help you are sick, your life is already ridiculously hard and you are doing the best you can. Don’t let anyone shame you into thinking badly of yourself.
I thought I’d share with you a few pearls of wisdom I say to myself when I’m having a wobble and doubting that I am doing all I can to manage my diseases:
- Jak, you live on your own with limited money and zero help. Be proud that you manage as well as you do.
- You don’t just have hEDS. You also have MCAD, M.E. and cripplingly painful endo and adeno. On top of that you’re going through the Menopause which even healthy women find difficult. Be kinder to yourself.
- Nausea kills your appetite. If you haven’t eaten a thing all day and the only item of food you fancy is a packet of Wine Gums they at least contain sugar and sugar equals energy – it’s better than starving.
- As a species, we have managed to survive and thrive for 2 millennia without chia seeds or sprouted peas. And you have managed to survive for 24 years of chronic illness without them too.
- What works for one person doesn’t work for another, especially when that other has both MCAD and Histamine Intolerance.
- I live in the north of England, not California. It’s sodding cold here and a green salad is not going to keep me going when it’s -10C outside and I have to walk the dog, bearing in mind I have M.E and my muscles don’t work properly. Without some seriously stodgy carbs I’d never get out of bed.
- Your life is ridiculously restricted. If you want to binge on Pringles and Jaffa Cakes washed down by pint mugs of Yorkshire tea every now and again knock yourself out.
- If all you have the energy to make for dinner is oven chips and a fried egg you’ve just consumed 14% of your RDA for Vitamin C, 26% Thiamin, 16% Riboflavin, 16% Niacin, 30% B6, 18% folate , 11% B12 plus Vitamins A, D, E & K alongside Calcium, Iron, Magnesium, Phosphorus, Potassium, Selenium, Zinc, Copper and Manganese not to mention 490mg of Omega 3 fatty acids, 26% of your RDA of protein and beneficial to POTS sodium. Processed or quick food does not equate “nutritionally deficient” whatever the food nazis tell you and it’s better than not eating at all cos you’re too knackered to make anything.
- I am doing the best I can under very difficult circumstances.
I watched a talk on the proposed dietary research EDS UK want to undertake recently and while I’m sure, in an ideal world, eating a diet rich in nutrients which aid collagen synthesis and wound repair would be beneficial let’s not forget that lots of people with hEDs have a digestive tract that is so fucked up they are being fed via a tube into their stomach or heart. Advice on a new diet isn’t going to help them much, or the estimated 10% of people with hEDS who also have MCAD and who are on restricted diets of varying types and severity. So to spend £250,000 on a treatment which is only going to help a proportion of hEDS patients makes me kind’ve pissed not to mention left out in the cold.
I’m really, really, fed up of being left out in the cold simply because my illness is complex or severe. Surely to goodness those people at the severe end of the spectrum are the ones we should help first not last? They are the ones whose entire lives have been robbed, whose futures are bleak and who are suffering the most. Instead, they are the ones ignored while the focus is on those easier to treat. It’s been just the same with M.E. for decades until, of course, world renowned geneticist Ron Davis’ son became severely ill which has resulted in the severely affected being studied by Nobel prize winning scientists in a race against time to save his life.
We are not all on the same journey – the path for some is smooth, flat, concreted and accompanied by helpful companions and for others is rocky, pot hole strewn, uphill and crawled alone. You can only do what you can do and don’t let anyone tell you that your best isn’t good enough.