Snowflakes and Spoons

Exercise: a necessity not a luxury. If I saw this post a year ago, I would never have clicked on it. I was always tired and felt like a barely made it through the day. When people traditionally talk about exercise routines words like 'sweat' 'pushing the limits' 'weight loss' 'body building' jump to mind. While most chronic Warriors would love to engage in this type of exercise, it is unrealistic for the majority of us. A regular exercise routine has helped me to improve my health, therefore I wanted to share my insight with you.  Suffering from Myasthenia Gravis, exercise can sometimes be seen as contradictory. In short, the strain on our voluntary muscles makes them weaker. However, we still need our muscles to move and engage in life or we risk becoming complete couch potatoes. Therefore a guided balance is needed. Literature notes the following benefits of exercise therapy for chronic diseases:   1 2 3   -    ...

2016: From Wheelchair to first place This year has been one of   miracles   and hard work. In January 2016 I went on a family holiday to Dullstroom. I was so physically weak, my husband had to push me around this tiny tranquil town in a wheelchair. For short distances, I was able to use my walking cane, but facing a set of stairs felt like trying to climb a cliff face. I didn't know how I was going to keep on going much less working. Flash forward to December 2016. I am working 27 hours a week. I am independent in driving and all my self-care.  Even better than that, I have been able to not just start competing in dog agility but, win a few first places! What was my secret potion, you may ask? Honestly, there was no one specific thing, but a combination that worked for me. Just like replacing the blocks of my Jenga Tower . 1)      Having the right medical team I am privileged to work within the medical field and always have a...

Mestinon: Storage and Shelf-life http://www.meda.co.za/ Mestinon (pyridostigmine)  is a lifeline for Myasthenia Gravis Warriors such as myself. I rely on it to keep my muscles functioning and take it every 4 hours. Without it, I can feel my eyes drooping and my muscles slowly turning to mush. When we had a postal strike in South Africa, I ran out of Mestinon. ‘Perhaps in three weeks’ I would receive my medication was their verdict. I had to go from pharmacy to pharmacy trying to source Mestinon at my own cost. After this, I vowed to always have some spare. So on a good day, I would stretch out my doses. I now have about a month’s supply extra. My concern was:  What is the shelf life of Mestinon and can I take it if it says it’s expired. Firstly Storage of Mestinon is essential as to maintain the drug's potency. -          Keep your tablets in the bottle until it is time to take them. I pack my medication out weekly in a medication...

Connect with me on Facebook : https://m.facebook.com/snowflakesandspoons/ I'm no longer a slave to fear… How do I go from singing this song on Sunday to actually believing and living it out on Monday? It's so easy to seem confident, raising my hands and proclaiming this when I'm safe and protected. It's not so easy to remember this in the face of fear. On a closer look at the lyrics, they don't state 'I am no longer afraid', but rather that 'I am no longer a slave to fear'. Being a slave means being bound and forced to participate in actions without free will. "There is no fear in love, but perfect love casts out fear; for fear has to do with punishment, and whoever fears has not reached perfection in love." ( 1 John 4:18 ) What are you afraid of? Sickness, violence, spiders? Being a slave immobilizes us to fully participate in life. We struggle to move forward, to be confident. It makes us anxious and we feel betrayed. Fo...

Hidden Vegan Gems in Cape Town I love discovering new restaurants, especially when I can order anything off the menu! Here are the top three places I found on my latest trip to Cape Town. Nomad (http://nomadrestaurant.co.za) There was no better experience than tapping the hard crust of a Crème Brûlée and breaking through the beautiful soft cream beneath. Going dairy free I gave up the hope to experience this again. Then I discover the Nomad Restaurant. Just outside Stellenbosh, the Nomad restaurant is set over a freshwater dam. The absolute best Gluten free, Vegan Pizza, bread and Crème Brûlée! But that's not all, your non-vegan family members can also order regular food. I enjoyed this place so much I even went back for a second visit! Cold Gold Ice Cream (http://coldgold.co.za) https://uk.pinterest.com/coldgold/cold-gold-products/  Paleo, Vegan, Banting diabetic or regular ice-cream/ sorbet made with natural ingredients. It's a visit for the wh...

5 Top reasons to visit Leafy Greens today! In my search for healthy meals I discovered one of my new favourite cafés; Leafy Greens.  Why do I love it so much?       1.       Proximity Due to its proximity, in less than 30min I can be there. After a long week of therapy, it often feels as if my own personal cup is full. I need to detox and breathe in fresh air to rejuvenate myself. The Café is a perfect place to do this as it's away from the city and has the feel of entering a secret garden, giving the café a relaxed natural feel. It’s my oasis of eating that is found at the end of a pathway of arched trees.       2.       Wonderful Food Since its opening in 2010, Antonio has carefully crafted this organic vegan menu. An al e-Carte menu is available before 11:30 for breakfasts or brunch, just a quick almond milk coffee or cold pressed juice, but the true vegan experience ...

A Tuff Pill To Swallow To follow this blog on Facebook click:  https://www.facebook.com/snowflakesandspoons/ Please note that this post has been split into swallowing and speech difficulties in order to allow for easy reading. Post 1: Learning how to swallow in times of autoimmune flare Before I was diagnosed, I had great difficulty swallowing. My diagnosing Dr. mentioned that it would start to improve once the medication started to take effect. After 6 months I could see improvement, however, I was still choking on a cup of tea and taking an hour eat half a sandwich which lead me to feel highly frustrated. My friend Stephanie was studying Speech Therapy at the time. After telling her my concerns she suggested a few practical steps which I still use today when I am having a bad day. Stephanie now owns her own private practice and was kind enough to answer some questions that I feel will be beneficial for MG warriors to know. My personal comments are added in i...

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...