What I learned by doing my hardest thing yet with TMS

[Diana-M]

I have really bad TMS— stiff numb legs, bad balance, cramped hands— for the past year I have considered taking a shower a major accomplishment. It’s hard for me to stand up for long, to move around, you name it. This week I took a vacation to the beach with my husband. I honestly do NOT know where I got the bravery to do it. Everything in me said it was beyond my capability—physically and mentally.

About 3 days before going, my anxiety and symptoms were escalating to a terrifying level. I even took a couple of doses of anti-anxiety medication (which I have on hand for emergencies). I hate that stuff, but I couldn’t take how miserable I was.

The morning of the trip, my legs weren’t working. I was a stiff board. I could barely get down the front steps of my house. Things were hurting that weren’t normally hurting. I couldn’t lift my left leg. I crawled to the car, trying not to freak out. I buckled up and away we went.

Once at the beach, I got into the rental condo via a mobility scooter. When I got there, I sat in a chair— filled with panic, pain and fear. (What was happening?!!!!) I couldn’t picture how I was going to get through the week, or even one night, with what was going on in my body.

My husband was on the balcony looking at the ocean. I didn’t think I could make it out there. But I gritted my teeth and forced myself. I was sick of giving in and missing everything I wanted.

Later that night, to my surprise, my symptoms loosened up a lot. I became calm. My pain lifted. I started to feel better than usual. Still had my symptoms, but not as bad. I went on to have a great time. I forgot about TMS and just lived. (Yes, with TMS!)

What I learned was huge. And it’s this—TMS needs its butt kicked. And while that’s happening, I faced a lot of pain—but really, it was much more fear than pain. I learned what it feels like to go head to head with that fear. I put my grit into it. I defied it. I resolved to go the distance.

Now that I know what this battle truly feels like, I’m going to keep giving my TMS hell. My fear won’t kill me. My pain won’t kill me. And my anxiety won’t kill me. None of it can kill me.

I don’t think you can reason with your lizard brain. I think you need to forcibly take your life back. That’s the magic formula. Straight through the fire.

I made it home today from a wonderful refreshing trip. Symptoms still down. Anxiety is nonexistent. I’m actually high as a kite!

I think I’m cracking this code. I’m at the other side of fear. After 4 years of this, I now know—and more importantly—my lizard brain knows, who is boss. And it’s me!

I will be walking unassisted one day soon. There’s no reason I can’t be.

Deepest thanks to all of my friends here who have strengthened me, motivated me, and shown me the way. I honestly owe my life to you.

 

[Cactusflower]

We all knew you could do it! You just had to know you could do it!

Glad you had a fantastic time, and here's to many many more great times.

No go kick TMS's butt!

 

[Diana-M]

We all knew you could do it! You just had to know you could do it!

 

[NewBeginning]

Thank you so much for sharing this, @Diana-M!
I am beyond elated for you and I deeply believe you can and will keep checking more and more things off the list of things you want to do!
Taking the next steps, figuratively and literally, confidently and courageously!!
You are doing amazingly.
Continuing to send thoughts of continued support and healing your way!
Looking forward to hearing more about your explorations!

 

[Diana-M]

Thank you so much for sharing this, @Diana-M!
I am beyond elated for you and I deeply believe you can and will keep checking more and more things off the list of things you want to do!
Taking the next steps, figuratively and literally, confidently and courageously!!
You are doing amazingly.
Continuing to send thoughts of continued support and healing your way!
Looking forward to hearing more about your explorations!

Thank you!

 

[TG957]

I have really bad TMS— stiff numb legs, bad balance, cramped hands— for the past year I have considered taking a shower a major accomplishment. It’s hard for me to stand up for long, to move around, you name it. This week I took a vacation to the beach with my husband. I honestly do NOT know where I got the bravery to do it. Everything in me said it was beyond my capability—physically and mentally.

About 3 days before going, my anxiety and symptoms were escalating to a terrifying level. I even took a couple of doses of anti-anxiety medication (which I have on hand for emergencies). I hate that stuff, but I couldn’t take how miserable I was.

The morning of the trip, my legs weren’t working. I was a stiff board. I could barely get down the front steps of my house. Things were hurting that weren’t normally hurting. I couldn’t lift my left leg. I crawled to the car, trying not to freak out. I buckled up and away we went.

Once at the beach, I got into the rental condo via a mobility scooter. When I got there, I sat in a chair— filled with panic, pain and fear. (What was happening?!!!!) I couldn’t picture how I was going to get through the week, or even one night, with what was going on in my body.

My husband was on the balcony looking at the ocean. I didn’t think I could make it out there. But I gritted my teeth and forced myself. I was sick of giving in and missing everything I wanted.

Later that night, t my surprise, my symptoms loosened up a lot. I became calm. My pain lifted. I started to feel better than usual. Still had my symptoms, but not as bad. I went on to have a great time. I forgot about TMS and just lived. (Yes, with TMS!)

What I learned was huge. And it’s this—TMS needs its butt kicked. And while that’s happening, I faced a lot of pain—but really, it was much more fear than pain. I learned what it feels like to go head to head with that fear. I put my grit into it. I defied it. I resolved to go the distance.

Now that I know what this battle truly feels like, I’m going to keep giving my TMS hell. My fear won’t kill me. My pain won’t kill me. And my anxiety won’t kill me. None of it can kill me.

I don’t think you can reason with your lizard brain. I think you need to forcibly take your life back. That’s the magic formula. Straight through the fire.

I made it home today from a wonderful refreshing trip. Symptoms still down. Anxiety is nonexistent. I’m actually high as a kite!

I think I’m cracking this code. I’m at the other side of fear. After 4 years of this, I now know—and more importantly—my lizard brain knows, who is boss. And it’s me!

I will be walking unassisted one day soon. There’s no reason I can’t be.

Deepest thanks to all of my friends here who have strengthened me, motivated me, and shown me the way. I honestly owe my life to you.

Beautifully said! Keep fighting!!!

 

[HealingMe]

So inspiring, Diana!

 

[Kevbot217]

Let's go!

 

[dystonicrunner]

I am so glad you did this and that not only did it go okay - it went brilliantly!

Vacations are terrifying for me. And it's so clear why. One year ago at this time I had my first dystonia symptoms where I was unable to even walk to my mailbox and I was due to go to Disney World in a month. I kept telling everyone there was something really wrong with me and I'd be on a mobility scooter because I couldn't walk AT ALL and everyone laughed and said you'd be fine (doctors, friends, family members). Well, I did end up using a mobility scooter (proved them wrong!) and what a blow to the ego after I had just done the marathon there a year before. Fortunately during that trip, I practiced walking every day in 97 degrees at the resort at night and I got better and better the whole trip. I didn't use the mobility scooter ever agin once we got home. (I had been using it to walk my dog around the neighborhood previously).

Fast forward to last September, we had another trip planned which was basically my "redemption trip" (I put so much weight on stuff) where all summer all I focused on was being able to walk and walk 20,000-30,000 steps a day and stand on my feet. I wouldn't even try to run again yet as I was so terrified of injuring myself even though I felt I was ready. Of course a month before we were set to go, I got severe pain in my right foot (not my foot that has dystonia or I had surgery on), and it was so severe I stopped walking and begged for an MRI from my doctor because I was like here we go again I'm not going to be able to do it I can't walk. It showed nothing but a ganglion cyst. The trip was so hard, the first few days I was in such pain and there would be random pains through the whole trip where I thought I injured this or that. But there was not stopping. There was no renting a mobility scooter. I did overall get better through the trip.

Here again, we are now 2.5 weeks from my trip and the past 3-4 weeks I've been having a dystonia flare up and major knee pain. I had about 24 hours where I was looking at purchasing a mobility scooter again but I've thankfully moved beyond that. And this time the trip is really hardcore. We will be in Florida for 3 weeks (no no we are not staying at Disney World for the whole time) and so it's like bigger than any marathon I've ever trained for.

I am hoping I can have the same experience as you that once I get down there and there is no option but to participate in the trip and walk and try to be a normal person... and I will have a reduction of symptoms.

If you are like why in the hell does this woman go to Disney World all the time, yes I have an Annual Pass and a part of Disney Vacation club. You'll hear me talk a lot about it all time, sorry! :-D

 

[Diana-M]

If you are like why in the hell does this woman go to Disney World all the time, yes I have an Annual Pass and a part of Disney Vacation club. You'll hear me talk a lot about it all time, sorry! :-D

Ha! I have in-laws who live in Florida and have a pass. I know how it is with some people!

Your situation brings up some issues that are similar for me— Two that stand out right now, other than the obvious (dystonia is the obvious.) Number one: Shame in the pressure to perform. We both are being brutal on ourselves and we want to be “normal.” But we aren’t. We deserve compassion and patience from ourselves and everybody. It’s not our fault we got TMS. Just like if we got a fever, it wouldn’t be our fault. People would have to be patient. I have avoided so many things because of this shame and I’m just barely coming out of it a year later. I wouldn’t even let my kids come over and visit me because I didn’t want them to see me using a walker. Sad, really. But now I’m changing and I think it is part of my overall healing. I’m not perfect people. Yep. I’m not.

Number two: Do you notice how when you conquer one thing, another symptom comes? And it tries to stop you from taking trips? Why? Because you love these trips. If you can’t take them, life is not really worth living. Right? It just shows you how stubborn your TMS is. It wants to protect you and distract you — so it tries to take away what you love. Until we teach our TMS brains that we are in charge, they’ll keep pulling this stuff. We also have to do all the basic Sarno cleanup of our insides— So that our TMS brains know WE know!

I can’t remember if I mentioned @TG957 to you. She healed from dystonia and wrote a book about it. She also has a blog and is active on this forum. I derive a ton of courage and hope from her! Her book is: Defying the Verdict, by Tamara Gurin. And her blog is: https://defeatcrps.com/ (Complex Regional Pain Syndrome : Your Path To Healing)

 

[dystonicrunner]

your situation brings up some issues that are similar for me

Number 1: Shame: I am sure this plays somewhat of a role as when I walk around my neighborhood and see other people, my walking gets worse and these people used to see me as a fast marathon runner and now I'm, well like this. However the bigger emotion for me, especially when it comes to Disney World where honestly everyone is "broken" for a lack of a better word this early in the AM - the number of knee sleeves and calf boots and ankle braces and on mobility scooters is astronomical. So at Disney I fit right in and don't feel weird at all. I have seen a few people with a leg dystonia at Disney.

I'd say my biggest fear with the vacation thing is GUILT because I am letting others down and physically not being able to do what they are doing. I have a young child and when I was at my worst I couldn't even pick him up from school I was so bad. In the nicer months we walk and I missed out on that. Of course then that lended to my husband doing everything while I felt I was rotting away on the couch and no one could even tell me why I couldn't do anything. Like if it was just a broken leg that would have at least had a normal course of healing, whatever I had was clearly not that. I am sure that my family doesn't expect me to be perfect and I have created much of the problem of the guilt, because I expect me to be perfect. (Guilt is a big theme through my life, I think I could fill 10 journals with that one.)

Number 2: Oh yes definitely! In terms of vacations it tends to be a pain episode or fully body itching/hives. Before our trip last September I had put so much weight on, I spent the entire summer on the verge of a panic attack. I felt all day I could vomit every day. I also have noticed that whenever I reach like a new milestone with my return to running, I will "pay for it" the next day. It's almost always a pain and I go to "I've injured myself" or "I over did it" or I if I can keep the pain at bay, I break out in hives or I have increased dystonia symptoms.

Yes I found @TG957 when I was lurking on this forum and read her book - the best and have connected with her.

All of you guys give me so much hope and sense of community. So much more positive than the Runner's Dystonia community - I have found my select few wonderful people there but I feel like this is really where I am meant to be.

 

[PainNoMore]

that's awesome Diana. a bold determination and a strong belief is needed! without being obsessed about it. that's the tricky part