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Glasses, coffee cup and notebook on a table

It sounds rather strange, I know, but imagine sitting next to a cold bus or train window during the winter. Imagine slamming doors. Loud music. The wind on your cheeks. Imagine all these things causing stabbing pain in and behind your eyes and ears. On and off for seconds, in bouts lasting an hour or longer.

That is the story of my eyes, the weakest part of me. The eye clinic has told me that, from now on, I have to treat my eyesight as if it was royalty.

Since the age of six, I’ve been wearing glasses – think the iconic John Lennon glasses, more fashionable ones later, before I eventually got contact lenses at 19. My worsening eyesight could easily have been caused by having my nose stuck in books since childhood. It easily might have been another reason. But one day, I experienced such horrific stabbing pain in and behind my eyes and ears that I had to go to the Emergency Room.

Like so many people with Multiple Sclerosis (MS), one of my early symptoms was optic neuritis, including some trigeminal neuralgia (TN). A few months later, I was also diagnosed with RAPD (Relative Afferent Pupillary Defect).

Eyes and sight symptoms

Fifteen years later, I’m still sensitive to noise due to TN, which triggers sharp eye and ear pain, and I’ve also become quite sensitive to everything bright. Seeing white clothes, walls, bed linen, blue skies, a sea of flashing, bright colours on TV or in the cinema. I wear sunglasses in places where you shouldn’t. Sometimes it is so loud in certain places, I need to put on my sunglasses. Seriously!

Like you, I bet there is so much about your life with MS that requires an explanation, and you want others to know. Despite my MS symptoms varying in time, space, and severity, if I didn’t treat it with humor – granted, often with sarcastic or slapstick undertones – I wouldn’t know how to get through life unscathed. So, sorry, eyeballs, you will have to take some stick!

My MS team does a great job in often difficult circumstances, and those assigned to my case deserve a shout-out as often as I can remember to do so (sorry, cognition, more stick). After 15 years of walking in and out of their consultation room, they know I regard my sense of humor as an alternative form of treatment that is vital to my wellbeing.

During another vision check-up, my doctor advised me to reduce the time spent in front of a laptop or TV. When, a few months later, I was again advised of the same thing, I joked “So now I can’t open the fridge in the dark in the middle of the night anymore either?!”

Interior ideas if you have MS

People with MS are told to take care of their vision, and I would hope that some of my ideas will resonate with others, as I am definitely open to how I can better do so myself. Having myopia with a visual acuity of -7.50 and -6.75, I need to treat my eyesight with the love and respect it deserves, so I took to alternative methods when I moved to a new house earlier this year.

My living room and bedroom furniture range from concrete-colour to dark grey, and I have black-out blinds and voile curtains to ensure that, when needed, no light comes into the living room and bedroom.

To give my eyes time to relax, I’ve gone for a minimalistic decoration style using straight lines as well as flat surfaces free from ordinary objects, clutter, and things I don’t need in a hurry.

I have more boxes to unpack with things that might yet find their way back onto my shelves when not necessarily needed anymore, so I am still on the minimalistic journey of visual salvation. I would love to hear from others who have adapted their environment in a similar way!

For more information on how your eyes can help you asses your MS, read here.

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