Today I thought I'd give you a little more insight into one of the ways I try to help control my ME/CFS: my diet.
I've been on my current diet for about two years now, and while I can't say it's fixed every problem, it's definitely helped. My nausea is basically gone, my guts aren't nearly as angry at me, and I find it much easier to control my blood sugar drops.
One thing I would say before we start though, is that this diet has been tailored to me by professionals, and that I had to have a variety of tests (and a great deal of trial and error) to get the right balance.
I'd be very supportive of anyone wanting to improve their diet, but I'd definitely recommend doing it under the guidance of medical professionals. The balance of ME sufferer's bodies is quite easily upset, so it takes a pretty close eye to make sure that you're not going to damage yourself.
Stay safe, kids. *awkward wink and point*
Through the wonders of the internet, I'm able to see the Optimum Health Clinic on a regular basis, who specialise in ME/CFS.
The clinic has a set diet plan for patients, which is then altered to suit the needs of each person, according to their symptoms and test results. It's a bit like a bastardised paleo diet.
Mine looks like this:
At least half of every meal should be vegetables. My tongue is almost permanently stained green.
I did not sign up for this.
Sugar makes the blood sugar (and energy) levels more likely to peak and trough, so no processed sugar of any kind. Natural sweeteners, like honey or maple syrup, are allowed occasionally in small doses.
No alcohol (because alcohol is basically sugar).
Only two portions of fruit a day (to limit sugar intake). Includes juice, which should be mixed with water.
Avoid dried fruits, due to the high sugar content.
Limited carbohydrates only. No potatoes, wheat or gluten. Brown rice, quinoa, non-gluten oats, buckwheat flour, and maize couscous are acceptable. We’ve now found pea and quinoa pasta which is wonderful because I didn’t have pasta for about a year and a half after we first started this diet.
(I'm only meant to have one portion of carbs a day, but we fudge this a little due to my blood sugar problems. Also because I can't eat many pulses to replace the carbs. My gut does not like pulses unless they're ground into a paste before they go anywhere near my face.
Fortunately, that means I can eat hummus, which is the best thing that can be made from pulses anyway.)
There are two parts of milk that people can be allergic to, lactose and casein. Lactose can be removed quite easily in many products, but the only thing that lacks casein, is ghee, which is removed from the butter during the clarifying process.
Naturally, I can't have casein, so no milk products for me. Horror of horrors, this means NO CHEESE.
Avoid all processed foods due to chemical sensitivity. Eat organic wherever possible.
Since doing this for a couple of years, I can now taste chemicals in food and can tell when vegetables aren't organic.
As a friend pointed out to me recently, I now have the most middle class superpower ever.
It might seem bizarre when you're tired all the time, but if you're trying to avoid peaks and troughs in energy levels, then chemicals that make your adrenaline spike, and then gives you withdrawal isn't the way to go.
Decaf is better, but then it's pumped full of chemicals, so it's best to only have it occasionally, if at all.
I mostly drink water, coconut water, camomile tea, fennel tea, or ginger tea. I do miss tea and coffee terribly, but I do understand why I shouldn't have it.
I did take a stand and decided I'm allowed one small hot chocolate a day. Because I'm a rebel. (And also because chocolates caffeine content is minimal.)
When cooking, use ghee or coconut oil, rather than cold pressed oils, which should be reserved for dressings.
Nuts are fine, with emphasis on them being raw, but peanuts should generally be avoided. I have no idea why.
Lots of protein. Meat, fish and eggs. Especially oily fish. One of the leading theories on ME/CFS is that our bodies have got mixed up and now make energy through the far less efficient fats and amino acids instead of carbs, so, on that logic, lots of protein is the way to go.
All of this is supported by a cocktail of supplements, as my body finds it more difficult to get the nutrients it needs from food.
(We also introduced six small meals instead of three large ones to accommodate for my nausea and blood sugar drops. It's much easier on your digestive system to have smaller, more regular meals to work on, and a constant stream of food stops you fainting if your hypoglycaemia flares up.
One thing that's also really helped with nausea is having our main meal at midday, instead of in the evening.)
Originally, I also wasn't allowed foods high in tyramine, because there was a chance they were giving me headaches.
That includes all cured foods, like smoked salmon and bacon, soy sauce, vinegar, and, I'm sorry to say, chocolate.
However, we found out through trial and error that this wasn't what was triggering my headache. Thank f...flip.
As you can imagine, when the Optimum Health Clinic sent me my new diet plan I did what any mature, well-balanced person who wanted to get better would do... I burst into tears.
You would not believe the amount of things that have sugar in. Tinned soup. Baked beans. All ready meals. Even stock cubes have sugar in them, so Mum's spent a fair amount of time boiling bones to make her own. Don't even get me started on chocolate.
I've got to say that, at the beginning, it felt like one of my only pleasures was being taken away from me.
At that point I'd been housebound for several months and was still pretty much at my lowest ebb. I'd only just started my resting ratio and I hadn't yet started to see the benefits from it, so it seemed like I had nothing left to enjoy. My parents were very, very worried about me.
But... I wanted to get better. And if it meant giving up cheese, mash, and toasted teacakes, then that's what I'd have to do. Even if I hated it.
The withdrawal from sugar made me feel terrible for about two weeks, and I've had to be super careful adding all my supplements into the diet, due to weird reactions. Some make me tired, some make my guts angry, one even made me horribly depressed when I had too much of it, so each thing is done very, very slowly.
In the end, I have found a balance that works for me, and many great substitutes for common foods. Chocolate was first on the list, but I’ve found some GREAT dairy free, coconut sugar versions that are delicious. Plus cacao (cocoa that's been cold pressed instead of roasted) has loads of health benefits so I don't have to feel bad eating it.To be honest, stuff with regular sugar in it tastes waaaaaaay too sweet to me now anyway, so it's worked out pretty well.
Most things can be substituted pretty well, except strong mature cheddar, and, weirdly, most Heinz tomato-based products. I dream of cream of tomato soup, although I can technically get away with no added sugar baked beans on occasion.I still have small amounts of Heinz ketchup sometimes, because I tried the paleo stuff, but I have standards, goddammit!
I'd like to take this moment to thank my Mum. She's always been an amazing cook (as well as amazing Mum), but with me feeling sad about my new diet, she really pulled out the stops.
I could not have done this without her. She's learned a whole new way of cooking, and researched breakfast cereals I can have, suitable bread substitutes, everything. In fact, the only thing she doesn't make herself is the hummus.
To be honest, I'm not sure how someone with ME would be able to keep up this diet unless they had someone to help or do it for them. (Although my situation isn't helped by need to have six meals a day instead of three. I do get to have second breakfast like a hobbit though, so that’s nice.)
It's not a cheap diet either, but, as I've said before, I'd walk on nails if it'd make me better, so spending a bit more on food doesn't seem like too bad a sacrifice.
My daily menu looks something a little like this.
1st Breakfast 7-8am:
Two heaped dessert spoons of homemade granola with unsweetened almond milk (a mix of nuts, toasted in vanilla and macademia oil, mixed with unsweetened desiccated coconut. It's nice, but to other people it tastes weird because there's no sugar in it. It took me a while to get used to eating something so savoury as a cereal.)
2nd Breakfast - 10am:
Small bowl of gluten free porridge with fruit, or
Buckwheat pancake with either fruit, or savoury fillings of ham, sundried tomato, or coconut “cheese”. Sometimes Mum makes fancy pancakes with smoked salmon and soft "cheese" (also made from coconut. Many, many things can be made from coconut.)
Savoury breakfasts come with salad. I prefer savoury breakfasts because they give me a bit more energy in the mornings.
Hot chocolate - 11am:
Raw hot chocolate with unsweetened soya milk (made with cacao)
Lunch - Midday:
There’s a wide variety of options here. We’ve found a lot of ways to do normal recipes by substituting ingredients, or just putting it with one of my carb options instead of potatoes or pasta. Today we had goulash and brown rice, with lots of broccoli.
I’ll often follow this with a cookie made from this life-saving recipe, or piece of my coconut sugar chocolate. Sometimes mum makes other things too. There’s a really good ginger cake by Hemsley and Hemsley that’s to die for. I do try not to have something sweet every day, but it's really difficult.
Vitashake - 1.30pm:
The Frankenstein’s monster of food stuffs, made from a banana, almond milk, and a vitamin supplement called Fast and Be Clear. Sometimes I put a spoon of cacao powder in when bananas have started to make me sad.
The makers of Fast and Be Clear have the gall to put “tastes great in water” on their packaging. I can only assume that their tastebuds died long ago, because, in water, this supplement has the texture of wet sand, and the taste of pre-digested food. That’s right, it’s vom-sand. Banana-based milkshake is the only thing that masks the taste sufficiently for me to be able to drink it.
Afternoon snack - 2.30pm:
Crudités and hummus. YAY, HUMMUS!
Sometimes I have celery and nut butter if Mum’s worried that I’m eating too much hummus, or if I have eaten all the hummus.
Pond water - 4.30pm:
Another supplement that's mixed with water. It tastes vaguely of vegetables so it isn't too bad, but I try not to look at it too closely when drinking it. The reason for this is quite plainly explained it the name.
Dinner - 5pm:
Either homemade soup, homemade ham with herby oatcakes, or a sandwich on homemade flaxseed bread. Sometimes David will make me smoked salmon and scrambled eggs.
More salad. (Always more salad.)
Supper - 8pm:
Two heaped dessert spoons of homemade granola with unsweetened almond milk.
I lost about a stone within the first six months of changing to this diet, but slowly, as my health has improved, my weight has stabilised and I've started to gain a little back.
There was a part of me that enjoyed being lighter, as I've never been anything that approaches skinny before, but unfortunately, instead of svelte I just looked rather straggly and gaunt, so it's probably a good thing.
My gut function is better, my skin, nails and hair are all better, and, yes, I do have more energy. I think a major part of that is down to the resting ratio, but it's definitely helped me to have my digestive system so well supported.
Sometimes there are days where I can't face eating another vegetable, and I just get that moment from the Vicar of Dibley stuck in my head, where Dawn French tries to force another sprout into her face.
But, when it comes down to it, between cheese and freedom, I know which one I'll choose.
Helpful links on foods:
Cheese: Violife cheese is made from coconut and melts realistically.
I like the soft cheese, cheddar cheese (which doesn't really taste of much, but also doesn't taste horrible), and the Parmesan version (don't be put off by the smell, it's actually quite nice).
Chocolate (all with natural sweeteners):
Real food source - great for lots of clean foods, but their coconut sugar chocolate in particular is great. We also use their almond butter to make cookies.
Raw Halo - great flavoured chocolate, like orange, mint, and salted caramel.
Almighty Foods - tastes the closest to real milk chocolate
Elements for Life - where I get my hot chocolate (the spiced one is lush) and also sell brownies I can have called Yummy Scrummy. And they really are.
Hemsley and Hemsley ginger cake, and flaxseed bread.
The magical chocolate cookie recipe that changed my life from PaleOMG. Seriously. Everyone who's tried these has asked for the recipe, even if they're on a normal diet.