The information and recommendations in this blog are not intended as a substitute for individualised medical and/or naturopathic advice.

Sunday, June 9, 2013

My Recipe for a Better Life with Autoimmune Diseases

This post is about my strategies in order to improve my quality of life with autoimmune diseases

I have been living with a condylar resorption in the mandible since I was a kid (1990s), posterior scleritis in both eyes since 2009, spondylitis and crohn's disease since 2010. Please read my story on the home page for more information, or contact me.

What matters the most to me right now is my jaw issue, as the resorption has damaged my cartilage and bones, and it affects my bite and quality of life at every single moment (closing my lips, breathing, swallowing, chewing, sleeping, exercising). My diseases are in remission so I feel grateful not being affected by any other symptom apart from the jaw joint and all the postural issue that goes along with it. 

Well, let's dive into it. 

Hereafter are my rules, meaning the things that I try to do on a daily basis. I am a bit obsessed with my health, it's true. However I aim at not being perfect. 

These things have a profound effect on my mood, sleep and energy level.

1) I make sleep a priority
If I don't, I may have digestive disorders, severe tensions in the jaw and neck, light pain in the eyes, brain fog, lack of energy.

  • Going to bed at the right time. For me, the ideal window is between 9.30 PM and 10.30 PM. 
  • Sleeping in a dark room. I turn off the lights to be in complete dark room. I have a sleeping mask and I wear it in the morning when I need some extra sleep ( between 6 and 9 AM) 
  • Sleeping enough. I need 8 hours. 
  • Sleeping without being hungry. I never sleep on a empty stomach. That would trigger insomnia on top of the symptoms listed above.
  • Not lying down right after a meal. I try to finish my meal at least one hour before going to bed. If I eat after 8.30 PM, I will have a meal super digestible (a medium sized portion of meat or fish, and mainly well-cooked non starchy and cruciferous veggies with moderate amounts of good fats, that's it) 
  • Avoiding bright lights and screens when the sun goes down. I turn off my computer and iphone at 7 PM. From 7 PM, I allow myself to listen to podcasts or to read a book.
  • Going outside at least for 30 minutes per day and exposing my eyes to bright light in the middle of the day. 
  • Not wearing my sun-glasses all the time and aiming at going outside at least 20 minutes per day

Extra readings

A good podcast about the effects of lights on our health

2) I live now: mindfulness is my favourite word
Being mindful means "being in the moment".
It has helped me to sleep.
Being mindful is not that easy. I had a fantastic teacher: Judith (http://yourmindcoach.com.au/)

If you google "Mindfulness", you will find lots of articles. My favourite author is Jon Kabat Zinn. 

3) I learn to eat what nourishes my body and makes me feel great physically & mentally
Food is powerful. It has the ability to make me more healthy or less healthy (quote from the book It Starts with Food)

Food impacts my physical and emotional states. Then, I am constantly listening to my body. It is not an obsession. It is just like listening to my closest friend. I do my best to be helpful if they need me. Being watchful allows me to tweak my diet accordingly.

I don't eat any grain, legume and dairy (guee only for now). I noticed that I don't digest onions and pears, even cooked. I am not doing well with almonds, even soaked. I can only tolerate small amounts of coconut cream, probably because it is a FODMAP.A what? Check this out: http://www.helphub.com.au/carbs-that-may-cause-problems-fodmaps-2 

I can not eat more than 3 squares of raw cacao without having an itchy throat, and I should not have them after 3 PM, otherwise I will not sleep (cafeine). 

I can only eat stewed bananas and apples. If I eat them raw, I am very bloated and my bowel movements are disturbed. 

I do really well with fish, meat, egg yolks and cooked veggies, luckily! Bone broth, fatty fish and liver (from healthy pastured animals) are my superfoods, and I have them almost daily. 

Eating is highly individual. We all want to feel great, don't we?. Not just "good". Fatigue, brain fog, poor digestion, depression or lack of sex drive are signs that our bodies are not functioning optimally. Tailoring our diet helps more than we would think. As soon as you discover the power of foods, you aim at one thing: feel great all the time.

4) I exercise according to my needs, not according to what the "Fitness Experts" say
No one is expert of my body, nor is the most passionate Personal Trainer. 

At the moment, I try to walk 45 minutes, 3 times per week, in the fresh air. I do some resistance training one to twice a week, without exhausting myself. I use my body weight and light dumbbells (3 kg maximum). 

I use a foam roller pretty often to relax my whole body. Have you read my post? http://www.helphub.com.au/get-well-with-the-magic-of-foam-rollers

If you have adrenal fatigue or a chronic condition, make sure you do not stress your body. Exercise is a stressor. It should be done appropriately, in order not to trigger any extra fatigue or inflammation. Read this article: http://chriskresser.com/why-you-may-need-to-exercise-less

5) Health is an on-going project. I keep a diary
I write down my thoughts in a diary on a daily basis. My diary is a dietary record as well as a way to track my sleep and my mood. 
I am now able to identify easily what makes me feel good or not.
It is also a gratitude journal.

What do you think? How do you take control of your health and happiness?


  1. Bonjour Nathalie!
    Je vous félicite et vous envie d'être parvenue à cet équilibre!
    Je suis moi-même en quête d'un meilleur état de santé. J'ai consulté bon nombre de spécialistes depuis mes 18 ans : hypoglycémie sévère/syndrome post-prandial, dyspepsie (reflux, troubles digestifs, ballonements...), hémorroïdes chroniques, maux de tête/migraines, manque d'énergie, thyroïdectomie récente en raison d'un goître imposant, allergies de plus en plus nombreuses, enflure, sinusite chronique...

    Pour ma part, j'ai décidé, il y a quatre semaines, de supprimer le blé/gluten de mon alimentation. La première semaine a été magique! Dommage que ça n'ait pas continué! Au bout d'une semaine, j'ai recommencé à manquer d'énergie, de concentration; je dormirais tout le temps!

    Bref, je continue mes "expériences" en triant, au fur et à mesure, ce qui est bon pour moi.

    Merci de partager vos trouvailles avec nous!


    1. Bonjour Valérie. Je trouve mes messages plus d'un an après, simplement parce que je n'avais pas activé un réglage dans mes paramètres. Merci de partager votre experience. Comment allez -vous à présent ? De mon coté, les choses n'ont pas été si simples ( suivez vous mon blog sclerite.blogspot.com ?) J'ai commencé un travail en janvier 2014 (en ayant l'intuition que ce serait inapproprié ... mais je me suis engagée qd même. J'ai démissionné en mai 2014 car je sentais que ce n'était pas sain du tout. J'ai vécu une crise depuis juillet 2014 et là je m'en remets doucement, avec encore de nouvelles choses dans mon aventure car à présent je m'intéresse à mon état émotionnel ( colères et pardon, redéfinition de mes désirs dans la vie etc ... ) et je sens que ceci aussi a eu un impact énorme sur mes maladies. Donnez moi de vos nouvelles!

  2. This routine of yours and the food you eat is a wonderful thing your doing. It's time to follow this and make my life happier than before. Thanks for sharing by the way.

    1. Hi Johnny Lore. I am sorry for this late reply due to wrong settings within my blog. Thanks a lot for your comment. It s nice to see that my posts can inspire others. How are you going ?

  3. I love this! I like how you add that exercise is individual and that it can be a stressor on the body. So true. I walk and jog 2-3 times per week. I also meditate. Listen to music and have tried to have more fun in the last month. I wish I can email you directly. I have been living with scleritis for several months. I notice that certain foods make it worse, such as sweets. I cannot have sweets or juice or soda. Stressful situations and lack of rest make it worse. Also being on the computer for hours, which I do as a writer and for my work. Thank you for your blogs!! You are a hero. I wish I could read your Remission blog in English, but it looks like it's in French and I don't read English. I have just subscribed to your blog. I am currently on two very strong medications for the scleritis and I'd like to get off of both, I am working on using my diet as the means of healing, in addition to change of lifestyle - more relaxation, more fun (because I too was a perfectionist/workaholic).

    peace to you Nathalie!

    1. Thanks so much for your beautiful message. Apologies I have not seen it before. How are you going ? Are you still on your medications ? How is your Scleritis ? Have you made lots of changes since Sept 2013 ? By the way, my other blog is in French but you can use the button translate within the blog. It is not perfect translation though. Take Care

  4. Bonjour Nathalie
    Je suis en France et je suis née en 76, je découvre ton blog!! tout comme toi je déclare depuis 2001 des maladies auto-immunes diverses (connectivités mixte avec hépatite auto-immune, lupus, polyarthrite, sclérodermie, syndrôme de raynaud et la dernière en date diagnostiqué en Décembre après un an de souffrance une Polymyosite) ; j'avais déjà pris en main l'alimentation en commençant Seignalet, régime 3ème médecine et en Septembre dernier j'ai découvert l'alimentation Paléo, je m'y suis mise en supprimant direct les céréales (féculents, pain, farines etc...) et le fromage de chèvre (cela fait 12ans que je ne mange plus de beurre, lait, produits laitiers) ; j'ai accentué les protéines pour les muscles, de bonnes protéines (sauf les oeufs qui me rendent malade). J'ai supprimé les légumes pro-inflammatoire (tomates, aubergines, poivrons) ; je fais tout comme toi attention aux fruits (je mange ananas, mangue et bananes surtout cuits) pour ne pas être gênée niveau digestion et intestins ; je fais aussi gaffe à l'amande, le lait et creme d'amande ne me vont pas trop, je m'autorise de temps en temps le la purée d'amandes complète non sucrée. Je cuisine bcp à l'huile de coco, crème de coco et épices (cannelle, curcumine qui est anti-inflammatoire, noix de muscade, combava, persil,ail, oignons et le gingembre).
    Je reste pour le moment fidèle au pain essen de blé et épeautre, je ressent encore le besoin dans la convalescence (je suis en rééducation) et je pratique le jeûne quotidien entre 16H00 et 20H00 (l'IF) pour laisser au corps le temps de combattre ce qui ne va pas.
    Je m'écoute bcp plus niveau sommeil, j'ai un besoin de dormir et de me relaxer au maximum , oui 8H00 à 11H00 de sommeil, je fais une sieste l'apm les jours de kiné et le week-end (pas tjs évident avec mes 4enfants loll)
    Je trouve bcp de similitude entre l'alimentation Paléo et ce qui est recommandé alimentairement pour les maladies auto-immunes.
    Je complète avec des compléments alimentaires pour les effets néfastes des traitements immuno et cortisone (spiruline, teinture mère de propolis en cure, macérat de bourgeon de cassis et dernièrement charbon végétal activé qui est un véritable nettoyeur et anti-poison pour les intestins et donc par ricochet foie, reins et sang) .
    J'espère pouvoir communiquer avec toi si cela te dis, je te souhaite pleins de belles choses et surtout une bien meilleure santé.
    Belle journée

    1. Bonjour Sani et merci pour ce message de partage. Je viens seulement de découvrir mes commentaires, car j'avais mal réglé les paramètres de ce blog, dommage! Tu peux me joindre par le biais du formulaire de contact dans le blog. Sinon je suis sur nathaliepaul80@gmail.com. Comment vas tu à présent ? Est ce que tu suis aussi mon blog en français ? sclerite.blogspot.com . Prends soin de toi.


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