Snowflakes and Spoons

Worshipping when you can't raise your hands or sing out loud I have grown up in the church and have a love for praise and worship. One of my earliest memories is from a Sunday School concert where I stood centre stage, singing and dancing to 'Peace like a river'. When the verse 'love like a fountain in my soul' played, I kicked my leg into fountain position backwards, then kicked it forwards to touch the sole of my foot as choreographed by our Sunday School teacher. What my teacher didn't realise was my love for my new slip on shoes and their ability to fly into the second row with that movement!! After I was first diagnosed I remember sitting in church too scared to close my eyes while praying, because I didn't know if I would be able to open them again. I had just recently resigned from helping lead the junior youth because I no longer had the endurance to commit to a Friday night. My voice was prone to becoming an inaudible squeak which cau...

Grove Green Cafe  To help prevent flares, I strive to eat healthy. I eat 'clean', non-processed food. My diet is gluten-free, dairy-free and sugar-free. I also limit eating nuts as my stomach seems to be sensitive to them. I juice regularly and only drink ozoned water. One thing that helps me to maintain this lifestyle is knowing where to eat out. This has been one of my great struggles and therefore I would like to dedicate a blog a month to places where you can eat clean food! My first post is dedicated to my newest find, The Grove Green Cafe. On the spur of the moment, my sister-in-law suggested we try somewhere different for lunch. Feeling like an afternoon of spoonful fun, we found ourselves exploring this new menu on a lazy Saturday afternoon. Nestled in a sheltered corner of Parkhurst, this quaint oasis is a wonderful ‘clean’ eating destination. The cafe has secure parking and a helpful car attendant. Unfortunately, the premises is not wheelchair frie...

The Spoon Theory and real life Basic theory The spoon theory was developed by Christine Miserandino. (1) Spoons are used as a metaphor to describe the units of energy available for people living with chronic illnesses. Each day everyone has a limited number of spoons available for the day. When spoons are used a person has to rest to replenish them. Therefore, people with chronic illnesses need to plan and manage their days. As there are only a specific number of spoons available people may choose to use their spoons differently to what is sometimes expected. The picture to the right was designed by the Chronic Fatigue Blogger, Jessica: http://sweetbriarsisters.com, to demonstrate this point. I have learnt some personal lessons along the way that I feel need to be added to this theory. Spoon Stealers Many people don't realise that activities of daily living (ADLs) such bathing or brushing your hair can steal spoons from a person with chronic illn...

How Snowflakes are formed Myasthenia Gravis (MG) is a chronic autoimmune neurological disease. (1)   What a mouthful! It has a world prevalence of between 25 and 142 per million  (2) indicating that those affected, especially in South Africa, are few and far apart. MG is often called the snowflake   disease   due to the fluctuating symptoms experienced from one person to another. Each snowflake has a similar primary ice crystal base, but the internal order of the primary crystal, and exposure to different atmospheric conditions during the formation of its crystal arms results in its unique appearance.  (3) S imilarly, MG is normally identified by muscle fatigue and weakness; this would be the primary crystal  (1)  . Each individual's genetic make-up, the internal order of the crystal, and their unique environmental and lifestyle stressors, the atmospheric conditions, results in each MG warrior's unique set of symptoms....