I have extensive damage to my nervous system both through my brain and down my spinal column. Even so, I can walk fine. Yet my ability to live normally is impacted in many ways. This is because messages don’t travel along my nervous system easily.
Sitting upright with my feet on the floor is exhausting. After ten minutes or so I can no longer stay upright and must sleep for a couple of hours. I manage best if I lean back with my feet resting about hip height. If you think that’s a core strength issue, think outside this default. It’s the damage to my spinal column.
Staying cool to the point of goose bumps is a must if I want messages to travel from and to my brain okay. If I’m not shivering, my function declines and I quickly reach exhaustion. All activity stops till I can chill myself again. If you think that’s hormone-related hot flushes, think outside this default. It’s the damage to my brain.
All physical and mental activities are difficult. Despite working within the confines of my ability, exhaustion can strike any time. It’s not my battery running low. It’s more like my fuel tank is punctured and the fuel just disappears. If you think this is related to diet, fitness and rest, think outside this default. It’s the damage to my nervous system.
Bus and train travel is out. Still, my partner and I once saw the opportunity for a two-hour air-conditioned coach tour we thought we’d try. The first and last half hour comprised of three, five minute drives with five minute stops for everyone to get out and take photos. I’d drink icy water and use a wet gym chamois to keep cool, rewetting the chamois every stop. The middle hour was a stop at an air conditioned café with a beach facing covered veranda. Again, I’d stay wet and cool.
After explaining my needs and being assured we could choose the most appropriate seat, we booked. The organiser said no one could board until he arrived and he’d seat us first. He was late, the coach pulled up and everyone but us got on. On arrival, the organiser asked two people to vacate their seat for us.
The seat was next to steps leading to middle opening doors. Leaning back, feet on the rail above the stairs, using icy water and chamois, I kept cool enough. On our first stop I sought out the people who vacated their seat for me. I wanted to say thanks. They weren’t together. The first lady was lovely. The second said, ‘The organiser told me you have a disability. I’m a nurse and I can’t see any disability. So, what’s your problem?’
When I explained my issue, thanking her again, she huffed and walked off. We later learned she’s a mental health nurse. Of all people who should understand that not every disability is visible, she’s a great example of why we must all think outside the chair.
This last part really gets to us, it seems even medical professionals struggle to understand the diversity of invisible disabilities. If you have a story like Emma’s that you would like us to share, please email email@example.com. We need to shout this message LOUD.