Snowflakes and Spoons

The Risks and Benefits of Awareness June has been Myasthenia Gravis Awareness Month. I have experienced the privilege of writing my own posts and memes. I have also been featured in one guest blog and interviewed by our local paper . I honestly feel that this the most awareness I have ever spread on the social media front. The highlight from this is the increased support I have gained from my fellow Krugersdorpians, chronic illness warriors, friends and family. My blog, Facebook page and Twitter account have never before had so action! The downside has been the negative comments. I understand that by writing about my life and MG, I open myself up to the potentiality of these comments, but they still hurt. Before I blogged I was open to speaking about my diagnosis. Since then I have realised that there is a difference between diagnostic disclosing and full disclosure. Saying I have MG and these are my symptoms  to letting people into your heart. Letting them ...

Walk a mile in a pair of MG shoes Myasthenia gravis is a chronic neurological autoimmune disease with no current cure. It is listed as a rare disease. Through advocacy and awareness, we strive to educate, support and give hope. If you have ever wondered what it is like to live daily with MG? Why not take a read about how it feels to walk in our shoes. Brain fog clogs   Heavy, inflexible and embarrassing (if you're not from the Netherlands). You can walk or shuffle in these foreign foot coverings, but there is no running in brain fog clogs. You can be in the middle of a sentence and struggle to think of a common word. ‘Please pass the …… thingy….with the lid.... the umm….jam!’ It's more than being forgetful, it's like your trying to remember a new language. Scuba flippers As you fit them on, they snugly hug your feet. You can imagine yourself gliding through the water like a mermaid. The only problem is that you are still on land, mile...

A spoon saver update. With the chilly weather approaching in South Africa, I wanted to share some of my best spoons savers for winter. I often struggle to regulate my temperate. This is due partly to my hypothyroidism and partly due to the lack of energy I have to keep warm, thanks to my MG. In a study done by Ahmed, Wyller, Håvard Loge and Kerty on Myasthenia and fatigue , MG warriors were noted to have higher total fatigue scores than controls.  A higher prevalence of autonomic symptoms, especially poor thermoregulation and sleep disturbance were seen in the study. Therefore keeping your temperature well regulated and getting good sleep is noted to help prevent fatigue. Fortunately, where I live we do not have snow and the temperature only drops to 0. I know this is already a blessing.  My warming tips: -          Hot water bottles/ warm bean bags This is the cheapest suggestion I have. For under R...

Help I'm growing a moustache! And the other wonders of medication side effects. The handful of drugs I take daily cause me both joy and pain. My success that can be seen externally is often compromised by the hardships I suffer personally. Juggling this is my daily warrior mission. After 4 months of being on my new immune suppression drugs, I am starting to feel less like a rag doll and more like a functional human. I can once again climb steps, drive and shop independently. My brain fog has slowly slipped away and I'm coping better at work. I can smile and my eyes don't fatigue as quickly. Best of all I'm wobbling around the agility field (can't call it running just yet). I wanted to write this post about helpful hints on how to deal with common side effects. I realised that many of the strategies I use are band-aids. Prevention when dealing with side effects seems almost nonexistent. It's a game of let's see what your body reacts to and t...

Colouring in: Therapeutic tool, soul food or nonsense? I have fond memories of sitting with my Aunty Karen at Grandma’s house and colouring in. I used to be amazed how she could turn a set of black and white lines into a kaleidoscope of colour with just 12 coloured pencils. I enjoyed the time I spent with her and the treats that Grandma was sure to bring.   Today colouring in has become the next best self-help tool. I too own a new set of pencils and colouring book. Many web pages and blogs claim to colour in can have a positive effect on mood, increased self-expression, increased focus, help you engage in meditation and spark creativity by embracing your inner child.   But yet when researching this topic I struggled to find journals or peer-reviewed articles. Could this be because adult colouring is a new topic or are the above claims false? Also, why don't I experience this positive kick? Why when I coloured in gift tags for Christmas I was so proud to stick t...

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 ...

I really enjoy watching TED talks. I find that they are a great way to gain a new perspective within 10min. I recently watched a TED talk by Benedictine monk, David Steindl-Rast, on the topic of Gratefulness. While his Austrian accent was at first a little distracting, the core of his message is powerful. ‘it is not happiness that makes us grateful. It's gratefulness that makes us happy.’  If we take a moment to stop, be mindful of the given moment and be thankful for life's opportunity,we hold the key to happiness in our own hands. In his words: ‘Stop, look and Go’. Here are some ways to implement this in your own life: STOP: Take time to ‘be’. Whether is it through meditation or just allowing yourself 10min of me time. Your brain needs to be allowed to hit the refresh button before you can truly be Grateful for your situation. You can do this through meditation or just allowing yourself 10min of ‘me’ time. I find that my brain loves the competitive cycle of complain...