There was an interesting conversation going on in a Facebook group recently which got me thinking. Someone pointed out that people they know with painful arthritis won’t try certain dietary changes medically proven to reduce inflammation and to help pain, because they like sweets and cakes too much. I’m interested in what the wider chronic illness community think about this because many of us live with chronic pain too and with diet protocols out there like AIP, paleo/stoneage, Whole 30 and Dr Myhill there’s lots of non-medical approaches to try to help with pain. As always I’ll post some links as I go so you can read more about these eating regimens and decide if you think they might help you too.
I know people with ME and fibro who complain continuously about the pain who won’t try even just cutting out sugar for a week, or nightshades despite these being common triggers for pain and inflammation. I sometimes wonder if that means their pain isn’t as bad as they say because surely you’d do anything at all to get rid pain above a 7/10? I know I would which is why I’ve been on the AIP diet for 18 months (more about what this is below). And I’m a right greedy so-and-so with a sweet tooth. But everyone’s circumstances are different and it can be hard to find motivation and stamina if bad food is one of the few pleasures in your life.
Sugar, booze, caffeine and comfort eating can also be an emotional crutch especially for people with depression or anxiety. Also for some people I’ve spoken to – and I’ve done this once or twice too – if you’ve exerted yourself to the point you’re going to crash for four days and be in agony anyway, why the heck not pig out on sweets and rubbish. You’ll be crying with pain and crippled anyway so might as well enjoy the next few hours. In a way it’s self punishment but having spoken to others about it, it seems quite a common reaction to a very limited and disabled life (yes, I used the D word then, I know not everyone identifies with it or is comfortable with it).
I hate my everyday background pain of around 4 or 5/10 (on a scale from nought to root canal without anaesthetic. Don’t ask why I know what that feels like). But when my pain sneaks up to 7 and higher, which happens for brief periods daily and for days and nights on end during my crashes, I would do anything at all, including never waking up again, to end the pain. And I don’t mean wanting to do away with myself, it’s a more passive thing of just needing the pain to stop.
I have a bigger problem with the sheer quantity of pain signals overwhelming me than I do with pain intensity. Intense pain in one place I can find ways of dealing with mentally. But thousands of pain sensations all over disable the self-control bit of my brain so I cannot focus on distancing myself from it. It’s like Fibro and ME are skipping hand in hand down the lane, kicking the old tin can that is my central nervous system along with each skip. When you feel like that often enough and for long enough periods, I really think you would do anything to find a way to control it. Like I said, pain is so subjective and in a way, the higher your pain threshold, the closer you come to breaking point before you accept something has to change. Torture is very motivating! And having been pushed that far by pain, it’s probably easier to commit to something very difficult like giving up food you love.
AIP stands for the Autoimmune Protocol diet. (Find out more at http://thetastyalternative.com/the-autoimmune-protocol-aip/ ) My aunt who has had ME for many years found she improved by changing her diet. She did the Whole 30 diet (more here http://whole30.com/whole30-program-rules/ ) and pointed me in that direction. I read about it and while researching it I stumbled across AIP which is similar but slightly more restrictive in order to cut out potential irritants and triggers and is more of an exclusion diet.
Now one thing you need to know about me is that I’m a real foody. I adore food. I love cooking it. I love buying it. I love eating it. And I’m by no means a skinny bird. So to go on any sort of diet is a sacrifice of biblical proportions for me. But by this time in my illness – this was October 2014, I’d had ME and Fibro for seven months and had just been signed off work – I was panicking. I was often bedridden, swinging wildly between crashes, and was desperate to get better so I could keep my job. So I decided to try the AIP diet – if I was going to have to give up my beloved nosh, I might as well do it properly for maximum potential benefit. Here’s some more detail about what the AIP diet includes and excludes:
There are a few things to note about it: in its strictest form the diet is designed to be a temporary thing not a permanent way of eating. It means eating only fresh food which gets surprisingly expensive. Cooking from fresh every day is problematic depending on your level of disability. Breakfasts seem impossible at first but get better as your attitude to food changes. And there is a cold turkey come down from sugar and caffeine but it doesn’t last long and is worth it. And at first glance, you appear to have removed everything tasty from your life.
But with some creative thinking these things can be slowly overcome. I’ll post some links to easy recipes below which fit the protocol and related protocols like paleo to give you some ideas of what can be achieved. And in a future post I’ll go into more details with recipes for tasty treats.
After three months on the AIP diet, my IBS symptom were vastly reduced. And importantly, my neuropathic pain had reduced by easily 50%. It was remarkable. I really noticed how improved I was after Christmas, having gone to stay with my parents and gone back to eating a “normal” diet for two weeks. Within days my pain was heightened, my energy levels worse and my bowels had packed up their bags, left a nasty dear John note and walked out on me. By the end of the two weeks I couldn’t wait to get back on my diet. Sounds mad, doesn’t it, with all the lovely Christmas choc swilling about the place. But I was hurting. Tired and hurting.
After returning home I went straight back to eating AIP. I had about three days of coming down from the high carb cravings of Christmas. Within five days my pain was again reduced and my bowels were waiting to greet me with open arms and forgiveness, as it were.
After a few months the cost of eating AIP was taking its toll: when exertion had me bedridden for days on end, my fridge full of fresh food would rot. And I can’t just pop down the shops for more, I have to wait till the supermarket next delivers. Also when stuck in bed hungry but without any diet-friendly food to eat, it’s an even more miserable place to be. By this time I was over three months into the diet so I decided to gradually reintroduce key foods that would help me resolve these problems. First I introduced nuts and seeds. I had no negative effects from that: quite the opposite in fact as walnuts helped me feel full. Nuts were perfect to have by the bed for when I couldn’t get up to get food. Secondly I introduced beans and pulses. This was to give me cheap sources of protein that don’t go off and I also wanted them for their prebiotic qualities. I know some people can experience what’s known as a fermenting gut from eating legumes but I was fine. I only have them occasionally and in small quantities, for example to add a small amount of complex carbohydrate and protein to a stew. Lastly I introduced eggs. This again was for cheapness because they are a source of protein that keep longer than meat or fish, and eggs give me a better choice of breakfast such as flaxseed pancakes, paleo breads or ham and eggs.
This seems like a good place to share a few Retox Diet friendly recipes and handy links that I like:
This extended version of the AIP diet has been my basic eating habit for eighteen months now. Occasionally I slip off the wagon like when there’s a special occasion or my boyf turns up with some scooby snacks (well, it’d be rude not to, wouldn’t it?). For that reason I call it the Retox Diet. Everybody else eats rubbish all year and once or twice a year has a detox. I do the opposite: I attempt to eat like a saint all year and every now and then snarf down a huge chocolate bar or have a meal out. That’s my choice.
There are ups and downs due to levels of impairment which can leave me going hungry for days on end. But I’m still working through finding ways of dealing with that. All in all, my Retox Diet has been the best thing I could have done to take control of my chronic illnesses.
And that’s my positive thought for this blog post: taking control of your own health when so much of it feels outside of your control is very rewarding. Perhaps it’s all the more rewarding because giving up foods that were a treat, a real pleasure and sometimes an emotional crutch is a flipping hard thing to do for a greedy bint such as myself. I feel a sense of pride when I eat healthily. And I feel physically good on it too. And when I don’t eat healthily it’s a very conscious choice made with acceptance of the inevitable consequences. Perhaps because those consequences are so severe: pain, further reduced mobility, incapacity sometimes, I don’t feel any sense of shame for choosing to eat unhealthily from time to time. It just is what it is: a choice. A transient thing with temporary consequences which I know I can go back to controlling tomorrow.