dystonicrunner
Well known member
To set the scene: 4/30/25 I could barely walk yet again with a dystonia flare up/pain. I was so terrified of my 3 weeks Florida vacation with tons of walking at Disney and looking into purchasing a mobility scooter.
5/1/25 I said let's go all in on trying this TMS thing.
About 2 weeks later my walking had improved a lot again, still dystonic and having pain, but back to functioning and enjoying walking. I was scared to try and run again so close to my trip. Like every other trip I've had this past year, because I am so scared of injuring myself or a dystonia flare up.
5/31/25 I said no, this IS THE EXACT TIME I need to try and run more than any other time. This is when I am most scared and my brain will continue to be able to convince myself that running is not safe and I am broken or will break myself so easily because yet again I'm saying, OH NO! Not before Disney!
In the 14 days before we left, I ran 11 of them. Including 4 days in a row. I have not done anything remotely like that since January 2024. When I've ran I've done like once or twice a week and then I'd have some new pain or dystonia relapse and quite for weeks again. (Fear I was overdoing it which was solidified by others comments about how I need to take it easy even though there was nothing structurally wrong with me). I had symptoms for sure during these 2 weeks, but I would have had symptoms if I hadn't done anything at all, guaranteed. Because my brain figures out a way to convince me I am injured by just moving around my house and going to Kroger.
It may make zero sense to non-runners or non-runDisney people, but the runDisney races were like ME. My passion, my identity, my everything. I had not run at Disney World since August 2023. (I haven't done a race since January 2023). I never thought I would run on this property again. My goal the last 2 weeks is to be able to do the big loop at my current resort. I've wanted to stay here since 2018 and run it since 2018, way before any Runner's Dystonia.
AND TODAY I DID IT! 3.5 miles!!!
MORE IMPORTANT: Although I would love to report more success with dealing with my pain (yesterday was really hard in particular), there have been HOURS walking around the parks and resorts the last few days that I have forgotten I have had dystonia. My walking has been great, the crowds haven't bothered me too much, my balance has been good. The best I've walked since February 2024.
Sure, my mind has already gone to where I will be in for a world of hurt tomorrow, because 1. I shared this success and shared my run on social media (I feel like I always jinx myself for bragging about any achievement I have and I'll for sure be in pain tomorrow or have a flare up) and 2. Well damn I should be, I did almost 32,000 steps today and I haven't taken that many steps with these 2 feet since August 2023!
5/1/25 I said let's go all in on trying this TMS thing.
About 2 weeks later my walking had improved a lot again, still dystonic and having pain, but back to functioning and enjoying walking. I was scared to try and run again so close to my trip. Like every other trip I've had this past year, because I am so scared of injuring myself or a dystonia flare up.
5/31/25 I said no, this IS THE EXACT TIME I need to try and run more than any other time. This is when I am most scared and my brain will continue to be able to convince myself that running is not safe and I am broken or will break myself so easily because yet again I'm saying, OH NO! Not before Disney!
In the 14 days before we left, I ran 11 of them. Including 4 days in a row. I have not done anything remotely like that since January 2024. When I've ran I've done like once or twice a week and then I'd have some new pain or dystonia relapse and quite for weeks again. (Fear I was overdoing it which was solidified by others comments about how I need to take it easy even though there was nothing structurally wrong with me). I had symptoms for sure during these 2 weeks, but I would have had symptoms if I hadn't done anything at all, guaranteed. Because my brain figures out a way to convince me I am injured by just moving around my house and going to Kroger.
It may make zero sense to non-runners or non-runDisney people, but the runDisney races were like ME. My passion, my identity, my everything. I had not run at Disney World since August 2023. (I haven't done a race since January 2023). I never thought I would run on this property again. My goal the last 2 weeks is to be able to do the big loop at my current resort. I've wanted to stay here since 2018 and run it since 2018, way before any Runner's Dystonia.
AND TODAY I DID IT! 3.5 miles!!!
MORE IMPORTANT: Although I would love to report more success with dealing with my pain (yesterday was really hard in particular), there have been HOURS walking around the parks and resorts the last few days that I have forgotten I have had dystonia. My walking has been great, the crowds haven't bothered me too much, my balance has been good. The best I've walked since February 2024.
Sure, my mind has already gone to where I will be in for a world of hurt tomorrow, because 1. I shared this success and shared my run on social media (I feel like I always jinx myself for bragging about any achievement I have and I'll for sure be in pain tomorrow or have a flare up) and 2. Well damn I should be, I did almost 32,000 steps today and I haven't taken that many steps with these 2 feet since August 2023!
