chronic fear holding me back

nowa

nowa

Peer Supporter
I cannot stop fearing physical things, especially my walking problems, which never go away and which make walking so f ing difficult that I find it impossible not to think about when I am actually walking, or to stop anticipating it... (with fear), ditto with going down the stairs to my bathroom,only 8 steps, and also getting into bed because I cannot get into a comfortable position because of difficulties moving around, (this last symptom started when I was in hospital 18 months ago, I was in the ICU unit twice, and nearly died twice, and I now understand that one stay in an ICU can cause anxiety and pain for years afterwards (PICS, post intensive care syndrome), but i now dread getting into bed, or lying down anywhere.

So how can I deal with TMS with all this constant fear?
 
i do hope that somebody will be kind enough to answer this post, I realise that i have been asking for a lot of support recently, but if anybody could answer this question, that would be so very helpful
 
nowa said:
I cannot stop fearing physical things, especially my walking problems, which never go away and which make walking so f ing difficult that I find it impossible not to think about when I am actually walking, or to stop anticipating it... (with fear), ditto with going down the stairs to my bathroom,only 8 steps, and also getting into bed because I cannot get into a comfortable position because of difficulties moving around, (this last symptom started when I was in hospital 18 months ago, I was in the ICU unit twice, and nearly died twice, and I now understand that one stay in an ICU can cause anxiety and pain for years afterwards (PICS, post intensive care syndrome), but i now dread getting into bed, or lying down anywhere.

So how can I deal with TMS with all this constant fear?
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Have you gone through Gordon Allan's Pain Recovery Program? Day 4 (Breaking the Pain Cycle) has a nice bit on fear. There's a picture of gas pump with FEAR written on it. That helps to remind me of the part that fear plays in pain and somehow gives me perspective. Day 6 (The Fear Matrix) also helps. Fear messes with me a lot lately as I come in and out of pain. Mostly it is the result of WORRY. I tell stories or better yet I lay around and tell myself WCS's (Worst Case Scenarios). But, really, all they are, are stories. They aren't real. And because they aren't real, I can (on a good day) literally rewrite them. Why not? Instead of my foot will be messed up forever, why not rewrite that story and say my foot will be fine? Either way, it's a story, and the later helps me NOW in the present moment. Breathing, too, helps, just breathing in slowly and exhaling all the way. Breathing and rewriting stories, one at a time. And posting. One post at a time. Hang in there. Glad you're reaching out.
 
nowa said:
I cannot stop fearing physical things, especially my walking problems, which never go away and which make walking so f ing difficult that I find it impossible not to think about when I am actually walking, or to stop anticipating it... (with fear), ditto with going down the stairs to my bathroom,only 8 steps, and also getting into bed because I cannot get into a comfortable position because of difficulties moving around, (this last symptom started when I was in hospital 18 months ago, I was in the ICU unit twice, and nearly died twice, and I now understand that one stay in an ICU can cause anxiety and pain for years afterwards (PICS, post intensive care syndrome), but i now dread getting into bed, or lying down anywhere.

So how can I deal with TMS with all this constant fear?
Click to expand...

Hi Nowa,

I once had to lay in bed with excruciating pain in one of my thighs for over 3 months. I couldn't weight-bear or walk - I feared (I was terrified) that it would never improve or go. (My doctors had no explanation for the pain - of course!) I also feared that I would never sleep adequately due to the pain.

What got me sleeping, despite the pain - which was so intense, it was 'screaming' at me - was to observe and examine the pain closely and not to mentally run away from it; this CD/MP3 helped me to do that https://www.soundstrue.com/collections/authors-shinzen-young/products/pain-relief-1 (Pain Relief). With close observation/examination, you realise that the pain and discomfort fluctuates - even if it's very very slightly - and that very very slight lessening in intensity, gave me a chink of hope that I would recover to the point of being able stand and walk again...and eventually I did. I appreciate that the general advice with TMS is to ignore the symptoms, whatever they may be...However, when the symptoms are so excruciating, debilitating or otherwise difficult to bear, paying close attention to them, keeping your breathing calm while you do so, can help you realise that they are not interminable.

With your walking problems, I can only tell you what I do and that is that I know how far I can usually walk and stand before I am overwhelmed (due to fatigue, pain, lack of stamina, shakiness etc.,) so I aim to walk and stand for that length of time each day. Some days I am overwhelmed more quickly than usual and other days I can walk and stand for a tiny bit longer than usual and very very gradually my basic 'usual' has overall has improved a little bit. To allay my fears and any despondency regarding my walking and standing I always try to remember that - as with the pain I endured in my thigh - when things fluctuate (even if it's by the tiniest, minutest amount) it means that there is the capacity there for improvement.

Also, reading the wealth of past threads and postings on this forum and acting on some of the suggestions and doing my own investigations (googling etc.,) into the things discussed on this forum and, in recent weeks, journaling about my 'shadow side' https://en.wikipedia.org/wiki/Shadow_(psychology) (Shadow (psychology) - Wikipedia) keeps me optimistic that my brain will eventually get the message.

I hope something I've said might help.

Kind wishes,
BloodMoon

P.S. Just thought I'd mention that, although some postings on this forum don't get a reply, I've found that the vast majority do - I think that the time difference makes a difference to when people are available to respond, what with us being in the UK and the majority of forum members being in the States.
 
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thank you both for your wonderfully helpful posts, I am going to go tobed in a few minutes, because my fatigue is getting to me today...
I will reply tomorrow
 
Northwood said:
Have you gone through Gordon Allan's Pain Recovery Program? Day 4 (Breaking the Pain Cycle) has a nice bit on fear. There's a picture of gas pump with FEAR written on it. That helps to remind me of the part that fear plays in pain and somehow gives me perspective. Day 6 (The Fear Matrix) also helps. Fear messes with me a lot lately as I come in and out of pain. Mostly it is the result of WORRY. I tell stories or better yet I lay around and tell myself WCS's (Worst Case Scenarios). But, really, all they are, are stories. They aren't real. And because they aren't real, I can (on a good day) literally rewrite them. Why not? Instead of my foot will be messed up forever, why not rewrite that story and say my foot will be fine? Either way, it's a story, and the later helps me NOW in the present moment. Breathing, too, helps, just breathing in slowly and exhaling all the way. Breathing and rewriting stories, one at a time. And posting. One post at a time. Hang in there. Glad you're reaching out.
Click to expand...

but I can't breathe, your post helped me to realise that that is one of my worst symptoms, so I have posted about it ...I have gone through the pain recovery program as far as day 12, but gave upon it so will start again
 
BloodMoon said:
Hi Nowa,

I once had to lay in bed with excruciating pain in one of my thighs for over 3 months. I couldn't weight-bear or walk - I feared (I was terrified) that it would never improve or go. (My doctors had no explanation for the pain - of course!) I also feared that I would never sleep adequately due to the pain.

What got me sleeping, despite the pain - which was so intense, it was 'screaming' at me - was to observe and examine the pain closely and not to mentally run away from it; this CD/MP3 helped me to do that https://www.soundstrue.com/collections/authors-shinzen-young/products/pain-relief-1 (Pain Relief). With close observation/examination, you realise that the pain and discomfort fluctuates - even if it's very very slightly - and that very very slight lessening in intensity, gave me a chink of hope that I would recover to the point of being able stand and walk again...and eventually I did. I appreciate that the general advice with TMS is to ignore the symptoms, whatever they may be...However, when the symptoms are so excruciating, debilitating or otherwise difficult to bear, paying close attention to them, keeping your breathing calm while you do so, can help you realise that they are not interminable.

With your walking problems, I can only tell you what I do and that is that I know how far I can usually walk and stand before I am overwhelmed (due to fatigue, pain, lack of stamina, shakiness etc.,) so I aim to walk and stand for that length of time each day. Some days I am overwhelmed more quickly than usual and other days I can walk and stand for a tiny bit longer than usual and very very gradually my basic 'usual' has overall has improved a little bit. To allay my fears and any despondency regarding my walking and standing I always try to remember that - as with the pain I endured in my thigh - when things fluctuate (even if it's by the tiniest, minutest amount) it means that there is the capacity there for improvement.

Also, reading the wealth of past threads and postings on this forum and acting on some of the suggestions and doing my own investigations (googling etc.,) into the things discussed on this forum and, in recent weeks, journaling about my 'shadow side' https://en.wikipedia.org/wiki/Shadow_(psychology) (Shadow (psychology) - Wikipedia) keeps me optimistic that my brain will eventually get the message.

I hope something I've said might help.

Kind wishes,
BloodMoon

P.S. Just thought I'd mention that, although some postings on this forum don't get a reply, I've found that the vast majority do - I think that the time difference makes a difference to when people are available to respond, what with us being in the UK and the majority of forum members being in the States.
Click to expand...


I am so worried that my walking problem may be due to Parkinson's, although i don't really believe that i have got PARKINSON'S, but because they don't vary very much,, although they are much worse when i am stressed, i cannot dealwith them in the way that you do, they are resent from the moment that I getout in the street. I am sorry to be so negative but I have not had a good night

thank you for the links which i will check out!
 
nowa said:
I am so worried that my walking problem may be due to Parkinson's, although i don't really believe that i have got PARKINSON'S, but because they don't vary very much,, although they are much worse when i am stressed, i cannot dealwith them in the way that you do, they are resent from the moment that I getout in the street. I am sorry to be so negative but I have not had a good night.
Click to expand...

Ok, beautiful nowa, I have two thoughts on this.

The first is that the fear is chronic because the issue of your diagnosis has been left hanging in the air until the lockdown eases. I’ve not heard any news on when the NHS are hoping to resume one-on-one appointments and things like scans.

You’ve had to shelve a fear instead of deal with it in the ways normal, pre-COVID life would allow. Now I have had my own mind-bending battles with fear and in the end the resolution came with knowing what I was dealing with. I’m aware that we’ve chatted a bit about this in the past but the world has flipped its lid since then and the lockdown has created a whole new world of anxiety problems and mental health issues for thousands of people. So your fear has now been put through the prism of lockdown. This has doubtless led to an amplification of your symptoms.

I’m going to link to a post I made last year about a horrible, long-standing tryst I had with TMS which resolved the second I got an all clear from my doctor.

https://www.tmswiki.org/forum/threads/urgent-breast-chest-pain.20283/#post-110633 (URGENT: Breast/Chest Pain)

My second thought is that whatever the diagnosis, you need to evolve ways of soothing yourself and stick with them. Learning how to relax and learning to approach life from a centred place is the mindset that not only enables you to recover from TMS but to deal with the more serious conditions. You know that I speak from experience here so do try to draw some comfort from that.

Meantime, are you able to speak to your GP about the imperative of moving things along? This state of limbo is a form of torture my darling and you need to break the impasse or know that it is upcoming.

I really do understand your fears and how paralysising they are. Give yourself a break sweetheart. Is there anything pleasurable you can turn your mind to?

love plum x
 
plum said:
Ok, beautiful nowa, I have two thoughts on this.

The first is that the fear is chronic because the issue of your diagnosis has been left hanging in the air until the lockdown eases. I’ve not heard any news on when the NHS are hoping to resume one-on-one appointments and things like scans.

You’ve had to shelve a fear instead of deal with it in the ways normal, pre-COVID life would allow. Now I have had my own mind-bending battles with fear and in the end the resolution came with knowing what I was dealing with. I’m aware that we’ve chatted a bit about this in the past but the world has flipped its lid since then and the lockdown has created a whole new world of anxiety problems and mental health issues for thousands of people. So your fear has now been put through the prism of lockdown. This has doubtless led to an amplification of your symptoms.

I’m going to link to a post I made last year about a horrible, long-standing tryst I had with TMS which resolved the second I got an all clear from my doctor.

https://www.tmswiki.org/forum/threads/urgent-breast-chest-pain.20283/#post-110633 (URGENT: Breast/Chest Pain)

My second thought is that whatever the diagnosis, you need to evolve ways of soothing yourself and stick with them. Learning how to relax and learning to approach life from a centred place is the mindset that not only enables you to recover from TMS but to deal with the more serious conditions. You know that I speak from experience here so do try to draw some comfort from that.

Meantime, are you able to speak to your GP about the imperative of moving things along? This state of limbo is a form of torture my darling and you need to break the impasse or know that it is upcoming.

I really do understand your fears and how paralysising they are. Give yourself a break sweetheart. Is there anything pleasurable you can turn your mind to?

love plum x
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my gp is hopeless and arrogant, so there's not much point in any contact... and I fear the outcome today, I am feeling so low. I could watch TV, there's a programme about a house called a House through Time, which I have recorded. i wlll try and let myself watch it. Thank you again, dear Plum xx
 
nowa said:
my gp is hopeless and arrogant, so there's not much point in any contact... and I fear the outcome today, I am feeling so low. I could watch TV, there's a programme about a house called a House through Time, which I have recorded. i wlll try and let myself watch it. Thank you again, dear Plum xx
Click to expand...

I think I watched most of that the other night, if it’s set in Bristol...

Have you tried speaking to someone at Parkinson’s UK? They have some very kind and supportive people on the care line. I’m sure they would understand your fears and be incredibly on side.

I know what you mean about GP’s! Mine is golden but my husband has had a string of dickheads. I had a real barney with the practice manager about it last year (who was an even bigger bell end than the doctor I was complaining about) :(
 
plum said:
I think I watched most of that the other night, if it’s set in Bristol...

Have you tried speaking to someone at Parkinson’s UK? They have some very kind and supportive people on the care line. I’m sure they would understand your fears and be incredibly on side.

I know what you mean about GP’s! Mine is golden but my husband has had a string of dickheads. I had a real barney with the practice manager about it last year (who was an even bigger bell end than the doctor I was complaining about) :(
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i don't have any questions that I want to ask about Parkinson's until I know I have got it, too scared
yes it's in Bristol.
 
nowa said:
i don't have any questions that I want to ask about Parkinson's until I know I have got it, too scared
yes it's in Bristol.
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It’ll be alright angel. I pray you don’t have it but if that eventually comes to pass please know that it can be managed incredibly well with medications and all the techniques we discuss on this forum.
 
but it can't be managed with medications, the neurologist ruled them out, because it's a Parkinsonian disorder, and they don't respond to medications apparently
 
plum said:
It’ll be alright angel. I pray you don’t have it but if that eventually comes to pass please know that it can be managed incredibly well with medications and all the techniques we discuss on this forum.
Click to expand...



Thank you for all your support and advice, it has really helped me. (and loads of other ppl as well, I am sure)
Nowa xx
 
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nowa said:
I know I will be alright, dear Plum, and I am sorry that i hit you with that new info yesterday, but please don't worry about me, I am feeling calmer today, and I know that even if I do have a parkinsonian disorder, that it is caused by my brain, and my body is still ok, so that I can go on with theTMS work knowing that I CAN improve my walking and all my other symptoms as well...

Thank you for all your support and advice, it has really helped me. (and loads of other ppl as well, I am sure)
Nowa xxxxxxx
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Don’t you worry. Everyone on here has been scared out of their minds at some point so there’s oodles of compassion for that. And besides we all have good days and bad days, we’re human and it’s all ok. More than anything I think people want to help because the peeps on this forum are good souls and we know how transformative TMS healing can be. You just take good care angel. xxxxx
 
Nowa, there is visualization technique. While you are safely lying in bed, you can start replaying in your mind how you are going to successfully walk down those 8 stairs. Doing it enough times will train your brain to not panic. Then, when you actually have to do it, anxiety will be more tame. I use this to deal with my fear of heights. When you make a deliberate effort to talk this way to your brain and watch your breath while imagining yourself walking, it gets easier.
 
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