I was thinking about some of my struggles (big and small) in my day-to-day MdDS life and started writing about the things that I’m hoping to have back in my life one day soon.
I am hoping for the day…
When I can shower without having one hand on the wall.
When I can walk without feeling like I’m on a rope suspension bridge.
When I can go into my closet or bathroom and not feel like the walls are closing in.
When I can concentrate for more than a few minutes.
When I can sit on a barstool.
When I will stop asking people, “Am I moving?”
When I don’t have to pick a bedspread based on the pattern (or lack thereof).
When I can walk and not be afraid of falling.
When I can stop agonizing over the next test, doctor, treatment or medicine to consider.
When I can be totally present during every conversation.
When I can meet up with friends and actually feel fine (and not just pretend I’m fine).
When the best part of my day isn’t sitting in a car.
When I don’t feel the need to think about what kind of day I’ll have tomorrow.
When I can go places and not think about the lighting.
When I can walk without touching walls, counters, and the backs of chairs.
When I’m not rocked to sleep at night (and rocked awake in the morning).
When the last time I didn’t feel like I was on a boat was when I was actually on a boat.
When I don’t cry at least once.
When I can be me again – or maybe even a better version of me.
I hope we all have this day soon.
After sharing this list within the MdDS Facebook group, a few other people wrote about their frustrations with certain symptoms. A trip to the grocery store can be very challenging – the lights, people, colors, patterns, narrow aisles. It all combines to make a very unpleasant outing (not that we particularly enjoyed it pre-MdDS). This can be the same for large events with crowds, bright lights and changes in lighting.
Other people shared about how the unpredictability of their symptoms impacts social outings and planning events. To those with a loved one with MdDS, please know that if we cancel on something, it’s not because we don’t want to be there or see you. We just want to make sure we can fully participate, feel okay and relaxed, and not take away from anyone else having a good time.
In addition to the rocking sensation and brain fuzziness, many of us with MdDS also struggle with headaches, ear/head pressure, eye tiredness, light sensitivity and fatigue. It’s sometimes difficult to explain to people how we’re feeling (especially when the brain fog rolls in). Trying to concentrate and speak at these times is frustrating. I know I don’t find the words as quickly and I hear myself rambling or stopping mid-sentence to try to finish my thought.
My friends and family want to help me, but this condition isn’t really within the realm of anything they’ve experienced. (It wasn’t in my experience either before I got it.) It’s human nature to try to understand other people through your own history of experiences. That’s why I often get advice for sea-sickness pills, balance bands, herbal treatments and more. That’s okay. As it’s difficult to find a doctor who knows and understands the condition, I can’t expect the people in my life to be subject matter experts. A simple, “Wow, that sucks. Is there anything I can do to help you?” is all I need.
Living with this condition has impacted all areas of my life, but I’m committed to not letting it rule my life. I walk, bike outside, work, go to shows and movies, and try to do most of the things I did before (it just requires a lot more effort). Despite my somewhat depressing list of hopes for the future, I am lucky. MdDS isn’t going to kill me and I have friends and family who love and support me.
For those of you struggling, seek out the support you need within the people you know, as well as the people you don’t. There’s a community who can help you through this journey. By reading about other people’s experiences through the Facebook group, I’ve learned so much about this condition and how it’s different for everyone.
Finally, to my fellow MdDS sufferers…
- You are not losing your mind
- What you feel is real
- We understand
- You are not alone