Walk a mile in a pair of MG shoes
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.
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 look like you are doing the March of the Penguins. With poor leg strength, MG warriors often suffer from a wide gait and clumsy steps.
Have you ever owned a pair of these? Most of the time they are silent and help you move effortlessly. However when your foot strikes that linoleum floor they suddenly come to start to squeak! Now imagine that is your voice. Your normal sounding voice suddenly gives in and becomes a nasal squeak! Not only embarrassing but also a sign that you are going into crisis.
Crocs with socks
Designed with many breathing holes, these plastic excuse for shoes are said to support your gait and aid your walking. The fashion horror begins when socks are added to the ensemble. While not only screaming out a lack of fashion sense your feet are trapped in sweaty smelly socks. Similarly, while all the components are present and the initial design is good breathing is often compromised.
This is one of the most dangerous physical symptoms. Your lungs feel like they have been suffocated in socks, unable to get enough oxygen in. The diaphragm tries it's best but it too has turned into plastic and cannot force the air out.
The Anxious Glass slipper
When I watched the new Cinderella movie, I was surprised that she wasn't the least bit worried that her glass slippers might chip or crack as she waltzed blissfully around the ballroom. Dealing with the fluctuation symptoms of MG is like constantly dancing on glass slippers, knowing that there is a minor crack in your shoe. They might hold out. They might both break away into shards at any step. Therefore, we tread anxiously trying to prevent cracks and save our slippers.
Just click your heels three times!
A pair of simple red pumps become your magical best friend when you click your heels three times. Dorothy ruby slippers shoes were recreated by Harry Winston with real rubies and Price Tag of $ 3 million! These are listed as the most expensive shoes! The real question is will these shoes take you back to Kansas or just give you blisters?
Taking medication is similar. You spend a fortune on it. You put your hopes in it and for some it works and for some it doesn't. More than often it leaves you with ugly side effects.
Louis Vuitton red-soled high heels
With all the other expenses the likelihood of me owning a pair of Louis Vuitton is slim, but not impossible. I could save up and own a pair that I most probably would only be able to sit in. Those that own a pair of these shoes know how they feel, how they fit and the reaction you get when you wear them.
Unfortunately, the same is true with Myasthenia Gravis Warriors. This rare disease has a fluctuating nature. Therefore, while you may have a great day on Monday, you can independently climb the stairs and able to do a little exercise, Tuesday is a bad day. You are tired, your legs are wobbly and eyes are blurry, but you still push through and go to work. Yes, it's difficult to understand if you have never been there, but not impossible to empathise with.
A few simple bumps on the bottom of an otherwise straightforward sports sneaker turns into a gripping traction boot!
While MG warriors have defiantly had some bumps on our road, these bumps have made us resilient. We are able to empathise with other chronic illness warriors. When times are tuff, we have learnt to grip in and stand firm with each other. It has opened my eyed to the many blessings in my life and how many people are willing to support me.