I’m 4 months #mecfs symptom free and I want to share how.
My adult life has been a roller coaster of feeling well, getting ill, feeling well and so on, I tried pacing, the lightening process, and a whole host of other things recommended but I would still fall ill, a few weeks after being well. When I found yoga I could feel how it could help me but I don’t stop the ill times it just allowed me to be a bit more patient and helped me not get so depressed. Meditation helped me to tune into my body even more and so I could really listen to what triggered my episodes and allowed me to learn to unwind from constantly running on adrenaline. There was a process of having to let myself totally fall apart so I could put myself back together at this point, as the adrenaline fuelled life dropped out of my system I became really ill, but I knew in my heart it was a thing I needed to go through to start to heal. I changed my diet, I clean ate, went gluten free and vegan. As I tuned in more through meditation and self love I noticed my body wasn’t digesting food like normal so I explored the #lowfodmap diet too, but I was still finding I became bloated, and I was still getting regular bouts of me episodes. And then my mum was diagnosed with #coeliac disease and she said to me I should look into it, I had a brief look and noted that a lot of the symptoms were similar but also I was already gluten free so thought it probably wasn’t that. Last summer due to circumstances I started to eat wheat again, ease, mainly as we weren’t living in our own home and life was busy. I noticed I was getting more and more tummy problems, so much so I could t digest anything. So I lived off white rice for a month or so just in a desperate need to stay well to be able to work, low in nutritional benefit and exhausted I went to the drs. They general ran bloods and all came back clear, the drs said it was just my ME glaring up and I needed to get on with it, but I knew through tuning into my body that it was something I was eating. I went back to researching coeliac, and decided to try and follow a seriously strict gluten free diet, this is different to the no bread no pasta type of gluten free that clean eaters may follow, this is nothing that may have potentially been in a factory or near to any source of gluten, gradually after a while I started to get less stomach issues. I was eating gluten free alternatives if I needed them and still clean food vegan. But the me was still about, although I found my recovery days were getting shorter the longer I was on this stricter diet, feeling like my body was getting the nutrients it needed once more. Still very much tuned into my body I was seeing what I’d eaten when I felt my ME symptoms lingering and started notice it was anything processed with gluten free on it or things that may have gone through a process where cross contamination happened. So I stripped back to not eating anything that had any potential of having gluten in it, sounds ridiculous but something stamped gluten free can still have up to 5parts per million of gluten in it. At Christmas I started to get cravings for eggs, and fish so I listened to my body knowing that it was telling me I was lacking these nutrients and gave up vegan, I started to eat what my body asked for and found sources of these things that sat with me morally. I still couldn’t go near lactose as it also gave me ME symptoms and so that is what I now eat. If I get a reaction it’s now generally due to cross contamination where a crumb has touched a part of my food or the ingredients have been packaged somewhere and only after research I find this out. For example dried lentils will trigger me due to their manufacturing process but tinned lentils are fine, if something has mustard in it and that mustard has wheat in it I will obviously be ill, so mustard is a no go, gluten free sausages cause a whole ton of me symptoms (heart palpitations, head aches, weakness), we have separate spreads, honeys, and I don’t eat any forms of bread or pasta (whether they’re gluten free or not). As a treat I used to have a coconut milk hot choc from our local coffee shop but they serve oat milk, so I now can’t have anything that’s goes onto the steamer as I will get ill. The symptoms of a reaction to cross contamination are different to me eating an amount of gluten, cross contamination causes me to feel #me exhausted, weak, my mind goes to treacle and I can’t get my words straight, I get heart palpitations, migraine like headaches and feel sick and insomnia. These in the past would knock me out for days, as I’d reach for a gluten free biscuit to pick me up or a piece of chocolate to keep me going, both now I realise just kept me in the spiral or reactions. The symptoms to me eating gluten are bloatedness, diarrhea or tiny rabbit droppings but loads throughout the day, sickness, exhaustion, plus all the above. But because I know now it’s a food trigger I know that I must a) get nutrition into me regularly as I have lost the previous day’s food due to the reaction, so I drink lots of green juices, eat just pure fruit veg and protein and don’t go near anything processed b) get some glucose into me dates and not butter are good to help with energy levels b) I know it will go quickly, the horrid symptoms tend to subside by late afternoon the next day and I’m left with a hangover feeling of tiredness that I nourish with healthy food and a good nights sleep. My aim is to obviously avoid all cross contamination by not ever buying processed or having to grab food on the go, this is definitely work in process as I’m not the most enthusiastic cook or food shopper!!! I continue to practice yoga daily and meditate to stay tuned in, I’m in a much happier place with my health due to yoga and I can now see that if I manage my diet strictly I will feel stronger. I may still get me episodes in the future but I hope that now my body is able to digest the food I eat in the right way my body will be strong enough to cope and bounce back a little quicker. So I’d encourage anyone with an illness that is exhaustion and stress related to take a very very close look at what you’re eating, as you just never know how it’s really making you feel.
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