How Using a Cane Has Improved My Life With Myasthenia Gravis
Living my life as a “normal” 29-year old woman has always been my goal. I try to put on makeup whenever I go out (that isn’t very often) and hide how I am truly feeling inside. The exhaustion is put away while I paste on a smile and try to do what I can as quickly as possible.
Since I was 15 I have been fighting refractory myasthenia gravis (a neuromuscular autoimmune disease that causes extreme muscle weakness). I have tried to hide the real side of it for so long, and often don’t let people see just how much I am battling on a daily basis.
When I go to a shopping center, I plan my trip and only go to shopping centers I know that are close to my house. I park near the shop I need to visit, and drive to the next entrance to visit the next shop on my list. I find the closest possible parking, and if they are too far then I will go home and try again later. I have always pushed a trolley around so I would have something to lean on and put my bag into, so I could save some spoons to make it through the day. If I go shopping with my husband, I clutch onto him throughout our visit and we often stop for a chai tea so I can rest my muscles and replenish my spoons for the rest of the day.
Recently I was lucky enough to take an overseas trip for my work. On the way home, I booked an assisted travel so they would push me through the airport on a wheelchair. I didn’t think I would really need it when I booked the ticket, but my husband encouraged me to make use of this option. When going to check in, I was told to go to a certain counter to check in my luggage. I went there and told them I was traveling with assistance. They then sent me to another counter as they couldn’t assist me with this. I tugged my luggage off the scale and walked down to the next counter, before hoisting my bag onto this scale. After speaking to the gentleman at this counter, I was informed I needed to go back to the original counter as he couldn’t check me in. At this stage I was already exhausted and I wanted to cry. I could barely lift my bag off the scale, and again moved along to the other counter. There was no apology and I was simply sent to wait in an area for the wheelchair to come.
I could barely hold my handbag and my legs were shaking, but they said if I was not waiting in this area then the man with the wheelchair would not help me. I collapsed into the chair when it arrived (almost an hour later) and I angrily felt hot tears pour down my face from sheer exhaustion.
When I arrived home, I couldn’t wait to see my husband and then climb into my bed to rest my exhausted body.
The week following this adventure, I paid more attention to my body. I noticed what I could manage without paying for it later, and how I had often been pushing my body beyond what was necessary. I noticed how I drag my feet when walking and how I had to avoid stairs whenever possible. When I fall down, I cannot lift myself up without crawling to a counter/piece of furniture to pull myself up.
I realized that I now need assistance. I cannot pay attention to the judgmental looks coming from others, and I can no longer be concerned about what people think. My husband and I discussed my lack of strength and constant relapses, and in between lots of tears, came to the decision that I would use a walking stick. My mum sent me my granny’s beautiful floral one and I took it out for a test drive that very same day.
Support. Confidence. Happiness.
I no longer feel unsteady on my feet, and don’t have to clutch onto counters while waiting to pay. I was terrified of this and of feeling like I was losing more of the “normal” from my life. But instead I have gotten back more! I don’t have to rely on others so much, or wait for a friend to be able to come out shopping with me. I do get a few funny looks from people who see a “normal” looking girl using a stick, and have been already been asked if I am using it to look “cool.”
Choosing to use a cane was one of the most difficult decisions ever, but I am so glad that I did!
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