Took a trip; it brought me down

[Diana-M]

This week I went to the beach for the second time since I got TMS. Last time I went was in May. It’s my favorite place to go. It’s filled with so many memories of great trips. Last time I went, I was just so happy to leave the house. I was proud for doing just that alone. My symptoms subsided on that trip. This time it kind of backfired. I had worse symptoms than ever and worse pain than ever the whole time. My left foot cramped so bad I was on the outside edge of it, trying to walk. I was super frustrated. But I battled through and I made the most of it. I didn’t back down.

I’m back home now— feeling a little dazed and exhausted. I hate posting negative posts— but the truth is, we have our ups and our downs on this journey. More than anything, I value when I’m able to keep a positive attitude because it keeps me going. Without that I’m hopeless. Today, I woke up pretty hopeless, so… back to the drawing board. (I just feel sometimes like I’m not making any progress at all —honestly!)

This week I’ll get back on my schedule. Schedules help me a lot. I’m on my 9th day of meditation. This is a new game plan. I know meditation has helped me in the past. I’m going to work up to an hour a day. I’m also going to increase my physical challenges—and leave the house more often. It’s very hard to do, so I don’t do it enough. Some things really hit home hard on this trip. I had to walk (with my walker) about 80 feet round-trip to the bathroom at a rest stop. It honestly almost killed me. Things like this just show me how hard being out in the real world really is for me. It’s one thing to be in a bubble— safe inside your house. Try doing things outside of your little world and you’ll see how far you have to go. But I want to go out into the real world, so I have to go there! I have to build up my strength. Is my TMS making me this weak? Is it my fear? Or, is it a combo of all that and I’m actually becoming weaker? (I can see how some people just get overwhelmed and quit. They accept where they are and stop trying to break out.) If I didn’t have examples of people who made it out of my circumstance on this forum— I might be tempted to quit. But I won’t give up.

 

[Cactusflower]

Hi @Diana-M
There's a lot to unpack in your post.
Firstly, the fact you took the trip, even with symptoms is a win. You did it. And you made it there and back again. It wasn't easy, but you did it. That's the way one begins to conquer their symptoms and deals with the fear. Yeah, so you feel yucky today...and might for a few days..but you also recognize that you need to have a day to feel it and then get back to life. Good for you!

I will comment on your saying "I got TMS". TMS is not an illness or a disease, and I think your brief comment shows that your mind still does not quite get. I have framed it as the fact I discovered a mind/body connection not that I "got" something. It's a very important distinction and one that challenges the idea of being a victim to "something" like an illness, disease, diagnoses or label.

I absolutely get having to walk 80 feet and it "killing" you. On my first trip, I couldn't even sit. This was during the time I was having pseudo seizures, fainting, and was walking only about 30 feet most days. By the time that trip ended, I was showering and changing on my own, and managed to walk a block outside even though it hurt terribly and I needed to lean on someone. I got home and was wiped out physically and mentally, but I had done it and gave myself a huge high five!

Keep up with this new attitude and you'll get there!

 

[Diana-M]

Thanks, @Cactusflower! I appreciate the encouragement.

"I got TMS". TMS is not an illness or a disease, and I think your brief comment shows that your mind still does not quite get.

Freudian slip?! I definitely know you don’t “get” TMS, like a disease. But maybe deep inside I think that? I’ll have to explore this and work on this.

By the time that trip ended, I was showering and changing on my own, and managed to walk a block outside even though it hurt terribly and I needed to lean on someone.

That’s fantastic you were able to make such great progress on your first trip!

 

[Cactusflower]

Everyday I notice some sneaky crappy old belief my mind hangs on to. It’s like the old game “break the ice”.. you gotta keep hammering away at each little block until it finally all comes crashing down!

 

[dlane2530]

I had worse symptoms than ever and worse pain than ever the whole time. My left foot cramped so bad I was on the outside edge of it, trying to walk.

Diana, good for you for taking this trip. You have had so much success with developing optimism and positivity -- this little low is just a blip! You are inspiring to so many of us here.
I wanted to quote this section to remind you of the support you gave me after my trip to Spain. Do you remember how my eye symptoms (and others, too!) got sooooo much better on the trip?! Woohoo! But my feet and ankles and calves, how it was excruciatingly painful and I limped most of those 75 miles, in huge pain?
But it was such a win. Because, oh boy did that TMS still show up, but in showing up it showed me that it was bullshit.
Anyway, the point is: we never know which way the lizard brain will react. And it means nothing. On your big beach trip a few months ago, you experienced lots of joy and surprising amounts of relief. Possibly because you were prepared for the worst. I wonder if this time you had an expectation -- even if subconscious, even if you were trying to be outcome independent -- that the beach would make everything better again. So what does TMS do? Of course it gave you foot cramps.
Alan Gordon talks about this so much -- it's so common, from what I understand, for an experience that relieves pain at one point to not relieve it at another. Claire Weekes talks about it, too -- how if you "go to the shops" or whatever one day and have no panic, you're actually rather likely to have panic the next time, because you're waiting to see if it's going to be okay again or not! I know you know Claire Weekes inside and out...don't forget this part
It means nothing, friend. You are not becoming weaker. You are just as safe at the beach or "out in the world" as you are at home. You are just stepping through the next steps.
Sending hugs. You can do this! I have 100% confidence in you!

 

[dlane2530]

I had to walk (with my walker) about 80 feet round-trip to the bathroom at a rest stop. It honestly almost killed me.

Also, Diana -- it *didn't* kill you. I have no doubt it was exhausting and very painful and very scary and made you feel pretty low about your abilities. But...I think maybe what you actually learned here is that you actually *can* walk 80 feet round trip in a public place like that! Wow! You're amazing! What a win! It was horrible but the main thing is not the pain and difficulty of it, but that my goodness, you did it! It was so hard and yet you actually did it!
So you can *definitely* handle some little baby steps toward going out more. Because you know that if you're in a situation where you have to do even more, it actually *won't* kill you.
Brava, friend!

 

[Diana-M]

@dlane2530
Dixie,
You helped me so much with your post! Thank you!!! (you also made me cry) I had forgotten everything you reminded me of. Yes! Please throw some Claire Weekes at me! All day long! Also: I had forgotten that you had more and different pain on your trip. Expectations really can be a problem. And you’re right. I was expecting a certain outcome. The lizard does what it wants. We carry on, nonetheless, with our lives. Great point about how I can continue with baby steps that won’t be as hard as 80 foot walks in public. And I will one day look back on this— the long walk to the restroom—as a distant memory. I’ll be walking on beautiful long hikes somewhere. Maybe on the coast of England.

It’s so easy to get crushed with doubt and discouragement. So. Easy. And what immediately follows is self pity. And self pity always brings loss of hope. Then, you’re dead in the water.

This journey is not for the faint of heart! Oh no, it’s not. And having encouragement from a fellow traveler means everything.

 

[Ellen]

"it brought me down" in the title of the thread. Don't mean to nitpick, but I think the way we characterize things demonstrates our thinking patterns and beliefs. You are externalizing your mood. Something else (my pain, my TMS) brought my mood down. I think realizing that we are doing this to ourselves is an important first step in recovery. If I am doing it, then I can fix it.