How can I ‘get on with life’ while I’m in pain and weak?

[Diana-M]

Yesterday I had a hideous day. I dunno. The blues sunk in. I even wondered if I’m dying. (Pretty dramatic!) I only admit this because I want you to know I believe you when you wonder —how can I get on with my life when I’m in pain or a have a symptom that drives me nuts?

The experts say “just live your life and ignore your symptoms” —that’s what it takes to get better. Really? Well, I dread taking showers cuz it takes me soooo long just to get dressed (I’m weak, stiff, and my hands are curled.) Anything is hard. Everything is hard. I’m just being honest here. Getting a glass of water is hard.

One of my greatest joys in life is going to the beach. I’ve been there with symptoms the past couple years, and it made getting around difficult. I was overwhelmed often. And sad. One trip I felt sorry for myself.

On another trip, I just remember being happy. I was happy no matter what. I focused on what I’m thankful for. It was before I was on this wiki, so I had bumbled upon a healing truth all by myself. If you are determined to be happy, that’s what you’ll be —and your memories will be way better.

Now this year poses a big problem. I can’t walk without assistance. I need a walker. So my husband and I have mutually avoided making plans to go to the beach this year. We usually go about 3 times/year.

He is hating this whole situation. No one talks much about the suffering our caretakers go through. They struggle with their own issues. It’s not that he doesn’t want to help me. He waits on me too much! It’s that it makes us sad comparing how things are with the past. We used to swim. We used to dance. We used to walk on the beach. We used to take boat rides. So many things!

Since I’m the handicapped one (for now!), I have come to the realization that if I wait to heal, I will miss out. I need to make adjustments and I told my husband so. It was a difficult conversation, because he just wants things to be different, so badly. He sees making accommodations as a sign of giving in.

But he came around! And we started looking at me using a scooter to “walk” the beach boardwalk and touring around town and to the restaurants.

I have been so nervous the past few trips. Always afraid of falling. I feel I can actually enjoy myself, if we do this.

Is this recommended by Sarno? I don’t think so. But I have a lot of weakness right now. I’m just not able to walk alone. I’m working on it.

Long story short, after this decision was made, I felt my heart lift. I can at least go to the beach again! And if I nurture the right attitude, I can be relaxed and thankful. And have fun!

Part of living a good life is learning to be happy where you are, with what you have. But ironically, it makes me more determined than ever to be stronger than ever by the time we go.

I’m curious what others feel or know about this topic who have had to temporarily use accommodations to “get on with life.” Does it promote or hinder healing from TMS?

@AnitaV @HappyLittleClouds, @Joima, @TG957
@shadowson, @Skylark7 @miffybunny , @Ellen
@BloodMoon
@JanAtheCPA

 

[TG957]

I’m curious what others feel or know about this topic who have had to temporarily use accommodations to “get on with life.” Does it promote or hinder healing from TMS?

Great question! Dr. Sarno gave one simple answer to it: drop all the props, get on with your life and TMS will fade away. But in real life it is not that simple. Most of the time the only thing that stands between you and getting on with your life is fear, but it is a very powerful enemy. Our use of accommodations certainly hinders healing, but it is not the accommodations themselves, it is our inability to confront and overcome the fear. Most importantly, not just in this particular case, but in every life situation.

People with more fragile nervous system tend to catastrophize. Rational assessment of the situation and your own abilities to overcome the obstacle is what gets you out of fear. For example, I have irrational fear of heights. I approached it from two sides, by calming down my nervous system through meditation and by consciously preparing myself each time I am facing the height I am afraid of through visualization of the upcoming experience. The same practice of rational assessment of my abilities and upcoming obstacle along with visualization helps me in other life situations, not just with heights. At the same time, you have to be patient with yourself and give yourself enough space and time to get through the fear.

 

[Cactusflower]

You WILL drop the props eventually. It takes time. Your brain is convinced you are disabled, and runs back to "dying" at times and that you "NEED" the walker. It's OK!!! You are clearly working towards the day you don't need these things.
Goals. You are making goals and figuring out how to reach them...now. Going to the boardwalk is doing it now, not later. Somedays you'll be able to do it, other days not.
I have been through exactly the same thing with my husband. He's had a few panic attacks because of it. I realize how much he's relied on me to be is de-stressor. I had to sit him down and advocate for myself and explain that I would go and do things with him when I didn't want to ... for 30 years because I felt I 'had to' even if I was tired or didn't want to. That I gave in for 30 years but he didn't see that, he thought it was "doing things together". Why do we have to do EVERYTHING together? We don't. You wanna go out and I don't - GO! Now sometimes I do go out and take a car home after a few hours. Sometimes I do go when I don't want to but I own this, myself and feel the anger of it (which passes and then frankly, I'm not angry about the "have to..." I remind myself it's a CHOICE). You must talk and communicate, even if your support system doesn't open up a lot - this is the chance to at least have YOUR say - to express your thanks, your love and your request to change some dynamics of the relationship. It confused the HECK out of my husband for awhile. It frustrated him, and I explained that was absolutely normal and he didn't have to like the changes - he could hate them, be angry at them and that's fine. FEEL the anger and get pissed off at the situation or at me. I explained that his getting pissed at me was a fantastic opportunity for me to deal with it without judgement.
We started by very short walks together. Even just down the street. In a month it was around the block...now we can walk up to 2 miles before I have difficulties but we're going on year 3 with TMS knowledge.
It can be slow for some people. At first that was frustrating to my husband but he sees the progress and is hopeful.

You are entitled to a blue day. To a day that sucks, to feeling in the dumps or feeling sorry for yourself for a day. It does suck! And every day you feel like that you have the opportunity to use your TMS and newly found personal skills the next day and turn things around (even if it takes a few days).

 

[Diana-M]

Most of the time the only thing that stands between you and getting on with your life is fear,

Thank you @TG957! Sage advice! It’s got me thinking. Oh absolutely, I let fear control my life. I am going to think about this and start using good head talk and your suggestions to meditate and visualize. I’m also going to just try and stop giving in to myself. I wonder how much of my life right now is “crippled” by my fear.

 

[Diana-M]

Oh boy, @Cactusflower! You have tackled some of my issues! Great comfort to hear your thoughts in this!

I had to sit him down and advocate for myself

This is what I did! And it felt great. I think my people pleasing trait has kept me from doing it enough. So I do have anger and frustration. I was musing to myself that maybe TMS will actually improve my marriage.

Sometimes I do go when I don't want to but I own this, myself and feel the anger of it

Sometimes I do a lot of things I don’t want to. That’s one of the things I’m learning now. And it’s time to say what I really want.

You must talk and communicate, even if your support system doesn't open up a lot - this is the chance to at least have YOUR say - to express your thanks, your love and your request to change some dynamics of the relationship.

Yes! A change in the dynamics. This is going to be the result.

You are entitled to a blue day.

Thank you! I’m even good today. So it’s a roller coaster. But I think this advocacy of myself and getting a positive response really lifted my hopes. It is amazing how all-encompassing TMS healing is!

 

[BloodMoon]

I have rollator/walker and two wheelchairs (one ordinary one and the other's a 'tilt-in-space' one that's designed to keep the pressure off the buttocks and lower back). Using this equipment meant that I was able to go to places that I wanted to visit that I would otherwise have missed out on. I viewed using these aids as an act of defiance against my TMSing brain that was trying to keep me 'safe' indoors, and it kept my spirits up.

I have no way of knowing whether using disability equipment slowed down my progress at all, but all I do know is that I haven't used my rollator for ages and I now only use one of my wheelchairs when I'm going to have to sit for many hours, whereas when I first got the equipment I couldn't have gone anywhere for any length of time without suffering severe pain and risking severe muscle spasms that painfully wrenched and torqued my pelvis (which often rendered me bed bound). I believe Sarno said that we shouldn't use aids like back supports and cushions etc., but then I think he also said that it was okay to take pain killers on a 'needs must' kind of basis, so what the heck - this is a 'needs must' situation to help you get around while you're doing 'the work'!

I remember hiring a scooter on one occasion when we visited a manor house that was surrounded by wonderful gardens that had some good, level paths. I used the scooter and then I swapped with my husband and he rode it for a while so that I could walk for a bit and get some exercise; I then got back on it again when I wanted to. I thought my husband would balk at the idea but he actually found using the scooter quite fun and we had a bit of a laugh about it. Anyway, to my mind, doing that was actually doing TMS work - that is, walking when I could and thus showing my brain that it was safe and that there wasn't anything to fear in being out and about.

He sees making accommodations as a sign of giving in. But he came around! And we started looking at me using a scooter to “walk” the beach boardwalk and touring around town and to the restaurants.

Good! I know that it's hard for our loved ones to go with the flow of things, but this way, your husband gets to enjoy trips to the beach too. It's a win win solution to a temporary situation.

 

[Diana-M]

@BloodMoon,

I agree that it’s an act of defiance to use these props temporarily. Why should the fun life end? And it takes courage to face the temporary changes needed. But it does feel good to plan this, like I’m taking a proactive role rather than cowering in my corner. I’m telling my brain that I’m refusing to let this TMS shut me down.

 

[Booble]

Diana, Are the physical problems that you are experiencing due to any diagnosed physical condition, aside from the deconditioning from not using your legs/muscles?

If not, now that you've learned more and more about TMS, I would be leaning toward the Sarno method of not using the implements.

Have you done any thinking and writing on the word handicapped? It's an interesting choice of words. What does handicapped mean to you? Are you really handicapped? Why are your legs not working and why do you feel like you are going to lose your balance? What would you need to be different to be able to walk strongly and with confidence?

If there is nothing physically wrong with you, you CAN walk again. You CAN walk without falling down.
Just because you got dizzy and fell down previously, doesn't mean you always will.

Believe me I've been there. I had a moment in time where I was getting borderline agoraphobic. Going out would make me immediately dizzy and off balance and nauseous. I definitely understand that feeling of "I can't!"

 

[Diana-M]

Diana, Are the physical problems that you are experiencing due to any diagnosed physical condition, aside from the deconditioning from not using your legs/muscles?

If not, now that you've learned more and more about TMS, I would be leaning toward the Sarno method of not using the implements.

Have you done any thinking and writing on the word handicapped? It's an interesting choice of words. What does handicapped mean to you? Are you really handicapped? Why are your legs not working and why do you feel like you are going to lose your balance? What would you need to be different to be able to walk strongly and with confidence?

If there is nothing physically wrong with you, you CAN walk again. You CAN walk without falling down.
Just because you got dizzy and fell down previously, doesn't mean you always will.

Believe me I've been there. I had a moment in time where I was getting borderline agoraphobic. Going out would make me immediately dizzy and off balance and nauseous. I definitely understand that feeling of "I can't!"

Hi, @Booble,
Thank you for your words of encouragement! That is interesting I used the word “handicapped.” Hmmm. I need to journal about that! You are right.

 

[Diana-M]

I love how other people on the wiki can see the mental and psychological weaknesses in the things we write in posts. It’s really eye opening!

 

[Booble]

Hi, @Booble,
Thank you for your words of encouragement! That is interesting I used the word “handicapped.” Hmmm. I need to journal about that! You are right.

Phew. I almost deleted the post as I wasn't sure how you would receive it.

I agree! It's often easier to spot things in other people than it is in ourselves -- for sure.

 

[Booble]

@Diana-M If I made add a few additional thoughts.

- Going to the beach doesn't take much. If you can get to the car, and walk just a bit you can plop yourself down. The joys of the beach. It's like an excuse to lay around doing nothing, while officially doing something!

- Re: husband.
That's a great topic. When we were younger husband had a hard time with me feeling off all the time. He wasn't super sympathetic. I think he just saw me as being lazy. Which fair enough, that is how physical and mental symptoms are displayed. For example I had severe endometriosis but I didn't know it. I did know that I felt crappy for much of my cycle. More crappy days in the month than feeling normal/good days. Add a few other physical things and then all the mental and compound x 10 with the mental.
In some ways husband's reaction was probably good for me. I had to buck up and find ways to carry on. It was good for me not to wallow. I was getting fearful of doing anything that involved being with other people because of a fear of feeling dizzy and fainting. So of course I would get dizzy and near faint. I forced myself to accept all invitations and to not cancel. I used my "crutches" which were things like making sure I was well hydrated or even eating something in advance to going out to dinner.
Over the years my husband started to understand and I think he grew up too. He became much more sympathetic and tried to be helpful rather than to accidentally make me feel worse. We've been together 40-ish years (ack!) so at this point we both understand each other. We laugh about how we both are flawed but still love each other.

 

[JanAtheCPA]

You ladies have some pretty awesome spousal units, I must say I love hearing these stories, and I think they can help others, too!

I believe Sarno said that we shouldn't use aids like back supports and cushions etc., but then I think he also said that it was okay to take pain killers on a 'needs must' kind of basis, so what the heck - this is a 'needs must' situation to help you get around while you're doing 'the work'!

This is exactly what I was going to point out when I saw your question @Diana-M. Don't forget that Dr Sarno was working with and writing about what one might call pretty typical TMS manifesting in adults who would not be able to answer a firm Yes to any of the ACEs questions. People like me, basically. He did not accept into his program anyone who he thought had serious trauma or who would benefit from psychotherapy. So when he made those assertions he was talking to a different group of people AND he very definitely made a clear exception when it came to medication. None of this is clearly defined nor should it ever be interpreted as black and white.

I say, do whatever it takes to bring joy into your life. The only requirement is your intent that whatever mitigation you employ is a temporary tool.

Just wear your sunscreen, darlin'

It's often easier to spot things in other people than it is in ourselves -- for sure.

Oh, lord, is this ever true

 

[Booble]

he thought it was "doing things together". Why do we have to do EVERYTHING together?

We were the "attached at the hip" couple too. I remember going to weddings and the preacher/minister/rabbi would always say things about joining your lives together but remaining separate people. Walk separately and together. In my head I would always resist that.

I guess maybe we feel we need each other to be full functional as a human. He needs me to do the talking and I need him to have the stamina. Combined we make a reasonable facsimile of a person.

 

[Diana-M]

I agree, @JanAtheCPA. I am loving these husband stories! My husband and I both think that this recent bout of my TMS has really put us both to the test. It takes a lot to get through this together. So much strain on both sides. I’m not the one who ever wants to be weak. I hate to be vulnerable, which for right now, I am. And now I have to be gracious and accept all this help from him.

Meanwhile, he has learned how to cook! Ha! I never dreamed that was possible. He refused. Now he’s even become kind of “protective” of “his” kitchen. He shoos me out if I try and help. And he actually follows recipes, so things turn out great! (I never do follow recipes exactly). Believe me, he can have the kitchen! He is also doing all the laundry and the million little things I used to do. He says, “I’m exhausted! I can’t hold up under all this pressure!” And I say, half jokingly, “Oh, you mean, doing what most women the world over are doing on a daily basis?” I think he does have a new understanding of things. But yes, it’s good and also very hard sometimes these days.

And like Booble said:

We laugh about how we both are flawed but still love each other.

 

[Diana-M]

You ladies have some pretty awesome spousal units, I must say I love hearing these stories, and I think they can help others, too!

This is exactly what I was going to point out when I saw your question @Diana-M. Don't forget that Dr Sarno was working with and writing about what one might call pretty typical TMS manifesting in adults who would not be able to answer a firm Yes to any of the ACEs questions. People like me, basically. He did not accept into his program anyone who he thought had serious trauma or who would benefit from psychotherapy. So when he made those assertions he was talking to a different group of people AND he very definitely made a clear exception when it came to medication. None of this is clearly defined nor should it ever be interpreted as black and white.

I say, do whatever it takes to bring joy into your life. The only requirement is your intent that whatever mitigation you employ is a temporary tool.

Just wear your sunscreen, darlin'

Oh, lord, is this ever true

Jan, thank you so much for this clarification about Sarno’s view of special instances. And I agree, I can’t even let my mind think for once that this is permanent.

And to answer @Booble ’s question about what would it take to walk, I think when my body finally loosens and relaxes, I won’t be so stiff and locked up and I’ll be able to have the basic logistics of walking return to me. Right now I feel like the tin man without oil in the Wizard of Oz.

 

[Diana-M]

It has been so wonderful meeting all of you. Your advice and friendship is really keeping me going! I keep thinking how fun it would be to all meet someday in person.

 

[JTinLA]

I think that giving into props and accommodations just prolongs TMS. And it shows you doubt it's TMS in the first place. Doing life WITH pain is the risk. If you want reassurance that you won't have any, you'll just get worse IMHO.

I can literally cripple myself with TMS. I lost all function in my legs my first time around with TMS. Fell on the floor in a panic and thought I was paralyzed. Was walking 30 minutes later.

I can make myself choke, or my heart rate fly up to 145 BPM, if I listen to TMS enough. We can do insane things with just emotional states and thoughts.

Do you have bone cancer? MS? AIDS? Widespread arthritis? ALS? Severed nerves? COPD? Heart Failure?

If not, what happened? Ask yourself. Ask yourself what secret "missed" medical condition would cripple you like this...without you being dead by now.

Anything?

 

[Diana-M]

If not, what happened? Ask yourself. Ask yourself what secret "missed" medical condition would cripple you like this...without you being dead by now.

Anything?

You are right. 100% right. I know this. Thank you for these extreme examples of what TMS has done to you. Wow. And you got better for years!

But I guess there is definitely some fear there for me. It is so strange to have such an intense mind-body connection. It’s hard to believe, but it totally is TMS. Once when my kids were young, I was in my first big TMS flare. All I had was tingling on the bottom of my right foot. I was tested for all sorts of things. Doctors couldn’t find anything. I went on this field trip with my kids to a roller skating rink. I’m a really good roller skater. I put on the skates and my legs turned to rubber. I couldn’t even get onto my feet. I collapsed. I took the skates off and never skated again. TMS. And proof of it. I walked out of there. Fear is the monster.

 

[Booble]

You are right. 100% right. I know this. But I guess there is definitely some fear there. It is so strange to have such an intense mind-body connection. It’s hard to believe, but it totally is TMS. Once when my kids were young, I was in my first big TMS flare. All I had was tingling on the bottom of my right foot. I was tested for all sorts of things. Doctors couldn’t find anything. I went on this field trip with my kids to a roller skating rink. I’m a really good roller skater. I put on the skates and my legs turned to rubber. I couldn’t even get onto my feet. I collapsed. I took the skates off and never skated again. TMS. And proof of it. I walked out of there. Fear is the monster here. Fear.

It's interesting how the legs seem to be your major TMS zone.
Have you explored?
Legs -- what happened around legs? What are legs used for? How do legs work? Who hurt your legs? Who tried to stop you from moving forward? Who do you hate?!