Sorry I haven’t been posting quite as regularly. I have been trying to deal with this flare up and balance finding ways to get on with my life with resting. Pretty standard stuff.
This week I started a Front-End Web Development Course at General Assembly, and I have a feeling I’m really going to enjoy it. I didn’t realise until after my first class on Monday just how much my confidence in myself and my abilities had been shaken since I stopped working. It was a great feeling walking out, exhausted, but knowing that my brain still does actually work! I am concerned about sitting for three hours straight two evenings a week, but that is something I’m going to have to figure out as the time goes on. I have a class this evening so I am watching Narcos (SO good, you should definitely check it out!) and sipping on green juice before I have to leave.
As this is something that I’m currently working on more and more, I thought I’d share with you how I try to manage balance with chronic illness. I hope it’s helpful for you!
In 2014 I’d had enough. Having had one chronic illness (Ehlers-Danlos Syndrome) my whole life and developing two more (PoTS and Histamine Intolerance), I was so sick of being sick.
I mean, understandable, right?
Parades of specialists and mountains of meds that didn’t work for me left me a quivering wreck on the sofa. And that was when I could actually get out of bed. I felt like my life was over, and after months of just falling deeper and deeper into hopelessness and depression I started Googling.
There had to be something that I could do to help.
And so started that incredibly important shift from “make me better” towards “I need to find ways to make myself better”.
Like many people I found inspirational bloggers who had healed themselves from all kinds of illnesses through diet. So after a ton of research, I jumped full on into a vegan, gluten free, refined sugar free, histamine balanced, high nutrient, anti-inflammatory rotation diet. Phew.
I started off on liquids. At the time my body couldn’t handle digesting food, so over a few months I slowly started building myself back up again…and my house constantly smelled like juiced greens. Then came the zoodles, the quinoa, more juice…
Something miraculous started happening. I was able to eat more. My allergies were getting under control. I could get out of bed for more than a few minutes at a time. Eventually I was able to get off the remaining medication I was on and was even able to start working again. I started Instagram at about the same time and shouted from the rooftops about the amazing changes I felt in my body. I was sure that I’d finally found my magic bullet. That I’d found something that would make me better.
But that was only part of the story. I became absolutely obsessed with what I deemed to be the “right” foods, terrified of going near anything else. In a way, when you have severe health issues the reasoning behind this can be different to someone who is just trying to eat well and develops an unhealthy relationship with food. I was trying to heal myself…so in my mind all that “bad” food was only going to make me feel worse and stop me from actually feeling well for the first time in my memory.
So there I was, floating along, blissfully unaware of the orthorexia that had overtaken me, happy that I was feeling better. When I had a flare up. And then another flare up. And then another one. I had to stop working again and drastically re-evaluate everything.
Which brings me to where I am today. Still sick. But determined and happily working on creating a more positive relationship with food. Will it cure me? Not unless they figure out a food can change the structure of my connective tissue. But it is one of the most powerful tools I have in terms of managing my health. So, I thought I’d share my 5 ways to manage balance with chronic illness (or three!) below:
1. Food isn’t everything
Oh, I wish it were. Look, for many people with many different conditions, diet can help in many different ways. I’m in no way denying that. But it took me a long time to realise that food isn’t absolutely the be all and end all for me.
With everything that I went through last year with all of the “food will cure me – I hope!” to the realization that food is only part of the puzzle when it comes to the management of my health, it has been quite a journey.
Coming to terms with the fact that not everything is in my control (something that #wellness doesn’t seem to believe) was really important. Accept the fact that sometimes your body is going to do what it’s going to do and it has nothing to do with the food that you choose to eat. The feeling of blame when I have a flare up still lingers, and that’s the one thing that I really need to shake.
2. A restrictive diet isn’t worth it when you’re not happy
My body doesn’t like it all that much, but I bloody love gluten and dairy.
Luckily, in London there are a lot of wonderful health food restaurants, but I got so sick of taking my friends to them. The first time I sat down at my old favourite burger place with my “normal” friends felt so weird. I still feel like a rebel when I go out and eat something not for the health benefits, but because I just love the taste.
For me, “mind happy” is just as important (and mostly more) as body happy. If going out and enjoying that burger or a pizza every now and then is going to help keep me happy rather than feeling miserable and restricted, you’d better know I’m gonna do it!
I don’t think of it in terms of cheat days or treats. I eat healthily most of the time (and am trying to figure out what that means for me and my body) and don’t keep food that I know I need to limit in my flat. The reason diets, any diet, don’t work is because they’re hard to stick to. I even find that I tend not to have such a bad physical reaction if I’m mindfully making the decision to go out and enjoy that meal. Then I’m less likely to binge and am just enjoying the food as part of a healthy, balanced diet.
3. Empower yourself to battle bad science
The amount of misinformation around makes me want to cry with frustration. Becoming scientifically literate, learning to spot quackery and looking past the clickbait has played a huge role in understanding just how food really interacts with my body. I’ve literally stopped reading about health benefits of any food. You can find evidence backing up any position and it just gets overwhelming and confusing. I focus on what feels right for me.
4. Take social media with a pinch of salt
Part of the reason we get so caught up is because of what we see other people presenting on social media. Who wouldn’t want to look so happy, healthy and glowing? We need to remember that what people present isn’t the whole story. It can’t be. Even though I use my Instagram as a daily chronic illness journal, I still don’t share everything that goes on in my life.
It can be a great way to get inspired and connect with other people, but it’s important to take social media for what it is, and not take it as gospel. Again, just because a certain diet or workout routine (this one really gets me, “… it’s all in the mind … just push yourself and do a crazy intense workout” yeah…sorry #strongnotskinny, but if I went for a run I’d probably end up in hospital with a dislocated knee).
5. Listen to your body
You know yourself better than anyone. The amount of unsolicited diet advice (did you know that going paleo/vegan/asking the universe is why I’m not better?!) I get on a weekly basis is sometimes ridiculous.
The thing is, once someone finds what works or them, they seem to think that it works for everyone else. Nobody knows your body or your balance.
Sometimes when my pain and my symptoms are super super bad and I can’t physically move, all I want to do is stuff my face with grilled cheese sandwiches. And sometimes that’s what I need to do.
That doesn’t make me a bad person. That makes me normal. I’m past the point of listening to what other people expect me to do. I’m focussing on being happy and as healthy as I can possibly be. And while I probably need to be significantly more careful than other people, restriction, guilt and placing too much of an emphasis on food is not the way to go.
If you’re in your teens or 20’s and are struggling with chronic illness, check out my coaching services for a friendly face to talk to.