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Showing posts from June, 2016

When awareness becomes Stigma

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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 experience your daily strug…

Walk a mile in a pair of MG shoes

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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, miles away from the shoreline. When you walk, you loo…

Ten Hacks to save spoons and keep warm this winter

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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, HÃ¥vard 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 R50 you can buy a hot water bottle or make a bean bag. By just using a sock and rice you can …