TRIGGER WARNING: Rachel Jones captured this image of patterns in the sand, titled “Perspective.” We put it at the bottom as it may trigger those with visual sensitivity, especially while scrolling. Proceed With Caution.
My “story” by Rachel Jones
I developed spontaneous MdDS in my early twenties (25 plus years ago)
l’ve never been in remission
My symptoms are: dizziness • vertigo • true spinning • ear fullness • eye disturbances • G force • depression (obviously) • aching & debilitating pain • headaches (daily) • migraine less often • sleep disturbances (I wake up feeling like I’ve been driven so so fast backwards) • weakness (legs & arms)
I was bed bound for many years just unable to function (thought I was going to die).
My gait is bad… I stagger like a drunk person when symptoms are high… head bobbing… lurching… neck pain…
My life is ruined… I have missed out on so so much with my daughter… my family… my friends… it’s robbed me… I feel hopeless.
Most days but have to keep reminding myself that I’m loved and it could be so much worse… it’s debilitating… scary… frightening and others just don’t get it!!!!
I’m sick of people telling me “well, you look ok”! It’s a hidden disease but I feel it’s noticeable.
Though not apparent, the takeaway Rachel wants you to get from her story is that, while others just don’t get it, you are not alone. She gets it. We get it. And there’s a whole community of MdDS warriors that gets it! Join our Facebook-based support group, MdDS Friends, and get the support you deserve today.
A note on “dizziness”
Although MdDS is recognized and listed in the International Classification of Diseases (ICD) under Dizziness and Giddiness, we recommend avoiding using the words “dizzy” or “vertigo” when describing your symptoms. Many have better success getting their doctor to understand when they say, “I feel like I’m on a boat” or something very descriptive such as “the floor moves up and down as if I’m on waves on a boat.” Learn more about Getting Diagnosed at https://mddsfoundation.org/getting-diagnosed/