Wednesday, February 9, 2011

CFS: What I Learnt

Before you read on, most of you know by now I am a huge fan of Sarah Wilson, and so this post is stupidly heavily inspired by her consistently ‘most popular’ post on her blog about healing autoimmune disease. You might even say it's a little copied, but I found it super-thorough the first time I read it and wanted to cover similar points. Most of you also know that I, like Sarah, suffered an autoimmune disease (or what I believe is one), in severe Chronic Fatigue Syndrome. If you don't know my story, you can read about it here.

I can not count the number of times people have asked me how I got better and what I did, so I'm putting it all in one place.

Please, please do not take the below as suitable for you. I am totally different to you, probably in 14 billion ways, and I'm sure what I did is not the solution for everyone. If it were, we'd have a cure.

So here it is, just like Sarah, in Q & A form.

What is CFS?
I don't know. I don't know for sure what caused it, even if I do know what made it worse for me, (mushroom supplements, cod liver oil and penicillin is what seemed to tip me completely over to bed bound). There are theories, and there was a definite theory behind the extremely controversial treatment method I took, (called the Marshall Protocol, which I'm now almost completely disconnected from), but I can't say, for sure, nor do I think any large body of people agreeing can, that I know what exactly it is. I know what it did to me, but I don't know what it is.

Did you put on weight?
No, the exact opposite. I lost, at my lowest, 28kgs. I was not a light girl, or a healthy eater before becoming ill, so the shock to my body not being able to digest all the rubbish I was used to eating really took it out of me. Plus with digesting being a very tiring thing, I stopped eating anything in large volumes. Fat and protein is also harder to digest than vegetables and fruit, so my diet cleaned up a lot because it had to, as well as my body working extremely hard to do really simple tasks, like sit up-right.

I used to get people
ask me with interest and a sick enthusiasm how I got so thin so they could go and do the same thing. I'm a woman, I'd always wanted to lose weight, but 28kgs is scary and I looked terrible and sick, not model like. Losing weight because of exercise and healthful eating feels great, losing 28kgs uncontrollably because you can't eat and your muscle is wasting, does not. I have since gained 4kgs and feel fantastic (and maintain this weight with a great healthy lifestyle). Needless the say, the whole experience changed my outlook on life and opinion on how we should look after our bodies.

The weirdest little theory I’ve developed?
I don't think it's weird, but I now only eat things that are easy to digest when I am unwell so my body can focus it's energy on healing and fighting. However contradictory to what CFS needed, and I'm only able to do this because I am completely clear of the CFS now, I also now help my body fight by exercising it and keeping it very active. Since recovering, I've found this is what helps me heal faster.

The first step?
Finding a very, very good Doctor - and not always from the school of traditional medicine. You will get no where with Autoimmune disease and especially CFS if you do not have an amazing Doctor. The second is getting a diagnosis out of that Doctor; it's much easier to fight when you know what it is you're fighting.

The second step?
Decide on a plan of action, with your Doctor, and stick to it. I am a huge believer that if you decide on a plan of action and actually stick to it, you are more likely to recover. I know many people that have stuck to 1 plan for years and improved or recovered, but literally no one who has jumped from idea to idea and improved significantly. Some people I know went down paths that completely contradicted the path I went down and still improved significantly, so I think it's a huge factor.

What does my wellness plan look like?
Mine's very internal and undefined, but it all revolves around treating my body as well as I can in every way possible. I'm still learning, and it's a very steep learning curve, (don't binge on chocolate, always keep calm, leave work at work, find time to meditate, don't obsess over weight or exercise), but I am getting there. I also do everything I can to fuel my body correctly and am, as you know, a huge believer in the power of food.

OK, so why did I get CFS?
I don't know, I truly don't, but I do know that the lifestyle I was living and a lot of the choices I was making did not cause it, but certainly would have made it worse.

Did anything good come of it?
I eat better, I am happier, I've learnt about my body, I want to be a nutritionist, I realised the degree I was studying is no where near my passion. Yes.

How do I eat now?
I am now vegetarian with a big focus on getting enough vegetables into my diet. I also eat a lot of fruit because I love it.

I drink a lot more water, (3-4 litres a day).

I do not eat fast food, and the once in every 2-3 months I do have a take away, it's only a handful of chips.

I choose wholegrain.

I never eat two heavy meals in the day or heavy close to bed time.

If I want alcohol, I drink wine or spirits. Anything laced with sugar is out, as is mixing drinks.

For the most part, I quit caffeine. I drink low caffeine green tea, decaf coffee and peppermint tea.

But the best technique ever?
Don't hope you'll be healthy or feel great, know you will.

Yes, but only when I feel like it and only doing things I enjoy. I can't force myself to run every night and I won't, but a run one night, yoga the next, some pilates 2 days later then, say, a 1/2 hour boot camp routine and I am happy. Not obsessing over exercise is something I've only just started learning how (not) to do. And please, please note, that exercise is not in any way the way to cure CFS or make it go away. It will make it worse.

Sleep much?
8 hours and I'm refreshed, 7 hours and I'll be OK, 6 hours and I am highly sensitive and cranky. I also recommend stretching as soon as you wake up. The body needs sleep, it just does, I don't care how well you feel on your 4 hours - it's not good.

Do you take vitamins?
No. My whole approach to healthy eating is obtaining all you need from what you put into your mouth every day. I have no deficiencies (yes, that includes Iron).

Am I now fixed?
From CFS? Yes. I can't prove it with a test or science, but my body and my mind tell me yes. I can't even relate to that world anymore and get a little uncomfortable when people talk about it. I almost feel unauthorised to write about it.

I've still got a long way to go on learning how to not rely on certain things to get my through the day, but that's breaking habit more than anything. I don't need these things to get through the day, they're just a safety net.

Any final advice?
If you're unwell or you don't always feel

100%, don't ever, ever think that that's just how your body is or how your life's going to be. Aim for better.

Questions are welcome. I hope this will be the last time I write about CFS as I'm looking forward to completely closing that chapter of my life.

Stay well,
Nat x


  1. I just wanted to say I'm glad I found your blog (via Vogue Forums!) and read this story. CFS is often misunderstood by the general public.
    I was diagnosed with CFS when I was 17, though I didn't have it as bad as you. It took a few years to 'get better', but I too have closed that chapter now :)

  2. Thank you for sharing your CFS story with us. I struggled with something along those lines for many years (never had a diagnosis) and find your perspective on it all very refreshing. You seem to have such a balanced approach to many things and it's lovely to read :)

  3. Catslovecooking glad your chapter is over too =) It's a fantastic feeling.
    Zaire - it's comments like that that inspire me to keep writing! x