Snowflakes and Spoons

Officially a Mom! On the 28th November 2017 my beautiful son, Levi was born. I entered this new territory with brave anticipation. As a first-time mom, I knew I would face unknown challenges on this road ahead. Having Myasthenia Gravis would bring its own set of unique twists and turns. Becoming a mother was always one of my hearts desires. One I often thought may be out of reach. What a blessing it was to find out just a bit more than a year ago we would have a child. Thankfully I have had a community of woman who have guided and showed me what it means not only to be a good mother but one led by God. Though this process I have realised that my mother, grandmother, aunt and mother in law are the four pillars of 'what it means to be a mom' to me. Because of them, I know how to persevere through sleepless nights, have the lion heart of fighting for my child's needs, how to be quite in a storm and how to have fun, laugh and enjoy every moment given in Go...

I can not believe how time has flown by since we first found out we were expecting. At times it still feels like a foreign concept as we await the arrival of our little boy. For me, the 3rd trimester felt a bit like a 'hurry up and wait' game. At times, there seemed to be too many pressures, classes, appointments and nesting to attend to but all I could really do was be prepared-ish and wait. Here are some tips I picked up during this time: A squeeze until the end As baby takes up more and more room your lung capacity is decreased. Make sure to monitor your breathing and be assertive with your PHC when it is more than being 'pregnant and out of breath' and rather MG related. With this squeeze indigestion and acid reflux often increases. Thankfully most over the counter antacid liquids, like Gaviscon, are safe for MG mommies. Make sure to double check your brand. The baby shower  For me, this could only be described as 'A coming together of suppor...

When I was younger, my parents owned a small sailing boat. We spent many relaxing days sailing on both the Vaal and Hartebeespoort dam. My Dad was our Captain, My Mom, deck hand and myself a 6-year-old Barbie Princess obsessed self always in my lumo life vest. When on board I always had my life vest on. My Mom was strict about this.  One sunny morning we headed out on the Vaal for a sail around the island.Half way through our trip the clouds started coming in. Not worried I continued playing on deck. I can only remember snip bits from there onwards. The wind getting colder and it starting to rain. The boat going from a gentle rock to almost keeling over. My Mom getting me to sit just inside the door of the cabin to protect me from the waves now washing the deck. Maybe it was because of the chaos on deck and the overpowering elements, but I can't remember any sounds. No screaming or crying. In fact, I can't even remember being that scared. I do remember ...

When diagnosed with Myasthenia Gravis, your neurologist will start to search for the best treatment for you. One of the more drastic treatment approaches you may be faced with is a thymectomy.  I underwent my transsternal thymectomy in 2009, two years after being officially diagnosed. Here are some tips to better prepare you and your family for this operation. Please note this is from personal experience and should not be taken as medical advice. Make sure to listen to your doctors and disclose all information needed prior to this operation. Pre-operation Buy pj's that button in the front for when you come out of ICU.   Make sure you have some socks packed in for ICU as it can be chilly. Wash your hair. You won't be able to do this until stable and that will be with assistance. Neaten up below. They will be inserting a catheter and may have to shave the area to stick the tubes down. Try some deep breathing or meditation to help relax.    See your as...

Have you ever felt like your hiding from the world or that nobody understands what you are going through? It may be because you are wearing a mask.  Putting on a mask is an instinctual behaviour. Think of the caveman, even though he was scared out of his mind he would stand tall, pout his chest and roar back at the lion. The problem is that we have gone from self-preservation to self-damage. We have gone from having a   Functional mask   to an Avoidance mask   The 6 main masks we wear  Strength Mask This person is always seen to be coping, has everything together and always has a plan.  They are the strong ones when everyone else falls apart.  "I can cope no matter what life throws at me" "I can do it myself, I don't need help" Intellectual Mask This person feels special, influential, valuable and better than others. they often don't listen, to advice and pretend to know everything.  "The r...

Seeing double? Visual accommodations for MG warriors  Myasthenia Gravis affects the muscles around the eyes. This can lead to double vision (diplopia), drooping eyelids (ptosis), dry eyes and trouble focusing. In addition, some of the medications used to manage MG can cause cataracts. 90% of MG warriors suffer from some form of ophthalmic impairment. 1   Below are practical solutions you can use to help ease the strain on your eyes.  Change all fonts to large.   Install screen reading software i.e. SpeakIt is available for free as Google Chrome extension   Control glare by adding a glare screen to the computer  Install proper lighting, dim lighting will cause strain on your eyes Allow frequent rest breaks Magnify written material using hand/stand/optical magnifiers Alternate covering one eye with an eye patch Use a cold compress over your eyes to ease muscle tension and 'revive' your eye muscles.  Use sunglasses and sun viso...

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   -    ...

My favorite fluffy chocolate cake! After many Drs visit, decisions and future plans, I needed a break. When starting a clean eating diet the one thing I missed the most was a fluffy piece of chocolate cake! After trial and error, I now have an adapted recipe of my mom's chocolate cake that I can proudly serve to guests. Dairy free, gluten free, sugar-free fluffy chocolate cake Recipe: 250ml gluten free  Cake flour 15ml Baking powder 2ml salt 60ml cocoa 4 eggs - separated 125ml oil 125ml boiling water 5ml vanilla essence 250ml coconut sugar * please note: I added an extra 5ml of Psyllium Husks as my gluten free cake mix did not contain any. Method: 1) Sieve together the flour, salt, baking powder and cocoa into large bowl 2) Separate the eggs 3) Beat the egg whites with a very clean beater until they form stiff white peaks 4 ) Beat the egg yolks 5) In a medium bowl mix the oil, boiling water and vanilla essence and coconut sugar 6) Add the b...

Occupational therapy strives to use a holistic treatment approach to improve a person's day to day functioning. Balancing life and engaging in work, leisure and personal management by teaching new skills or adapting task or environment is a high priority for OTs. By using meaningful activities we encourage clients to live their life to their personal best. This can be done in a group setting or on an individual either on hospital or on an outpatient basis. So what services can an Occupational Therapist offer an adult client with a chronic illness? “As much as 90% of the management of a chronic condition must be performed, not by health care providers, but by the person who has the condition.” ‐ California Healthcare Foundation, 2008 whether it's managing your medication, putting on your own socks or remembering where you left the keys OT is the profession to help you. Here are 10 other topics that an OT can include in your treatment:       1)  ...

Adaptive Reading Strategies  I recently came down with the flu. After a few days of sleep, social media and TV I was frustrated and bored.  I used to love to read. To hold a book in my hands and escape into another world. Having some time on my hands, I was able to come up with several strategies to get back into this hobby and conserve my spoons. I have put together some ideas to help it easier to maintain strength and focus when reading. Visual Fatigue:  Visual fatigue and drooping eyelids are two main symptoms of ocular Myasthenia Gravis. A highlighted reading strip helps you to remain focused and assist your eyes to track the sentences. You can make one by cutting a coloured transparency sheet into strips and taping masking tape along the borders. Alternatively, you can purchase one online. Magnifying glass to enlarge text decreases the strain on your eyes. Double vision can be combated by using an eye patch to cover one eye. Muscle fatigue:...