Feeling Better And Mind/body Relation

[galatea]

Hi, I haven’t been on the forum for months, as I have been feeling much better, just thought I’d pop back in here today. I thought it was the Mestinon, but last week I decided to come off it to see how I’d react – and I’m doing just as well! I’m definitely not completely better – but I’m incomparably better than I was a year ago.

My interpretation of why I’m better is firstly just time, and secondly getting into a sort of upwards energy spiral. The mestinon was initially a big energy booster, which then boosted me into have a more active lifestyle etc.

I think the worst thing about being ill is getting into a downwards spiral, and arranging (not through our fault) all our lives around the illness, through diet, exercise, carefully measured activities etc. Recently (only possible because I was feeling slightly better anyway) I decided to ignore all the diets, not go so nuclear on the salt, to stop timing my daily walk and so treat it less as a necessary exercise for the illness and this has definitely helped. I feel less controlled/ governed by illness, although I totally understand this isn’t possible for many.

I’ve noticed that when I want to/pretend to appear healthy in front of people, I genuinely feel more energy, whereas when I’m worried people don’t take my POTS seriously enough I actually feel much worse. Also the more attentive I am to how I'm feeling the worse I feel. This is in no way implying that it is psychological, nor that an attitude can cure, I’m not sure why this is. Anyone else get this? It’s been something I’ve often been aware of but that is quite hard to accept - and which I would only discuss with other potsies, NEVER to anyone else since then they would say it's all psychological and other ****

This is a fascinating article in the NYT about the relation between the mind and body, hopefully some of you will find it interesting from a POTS perspective. Would love to hear your opinions.

http://www.nytimes.com/2014/10/26/magazine/what-if-age-is-nothing-but-a-mind-set.html

If the link doesn’t work, you can google ‘What if Age Is Nothing but a Mind-Set?’

[imapumpkin]

Glad to hear you are doing better! I find that I feel slightly better on days that I put on real people clothes (instead of just bumming around in sweats) doing my hair and putting on my makeup. I don't think they make me in any way physically better in terms of mind over matter, but I feel more normal if I'm dressing the way I would normally before I got sick, if that makes sense?

[galatea]

Thanks! yes, keeping up some sort of normality instead of hanging around in pyjamas definitely helps. Like when I have to get up early and quickly to go to the doctors or something, I feel more alert and well.

[Goschi]

Definitely yes!! I experience it every day, how much difference psychological factors make...

When I was very sick and started to walk again outside of my apartment house, the further I walked away from the house, the more "potsy" I felt (but not just the feeling, also the heart rate!!). Already after 3-4 minutes I was often in fully blown panic...

When instead I just walked up and down in front of my house, I could walk up to 15-20 without any worsening of symptoms (and without rise in heart rate!!).

Don't get me wrong: POTS/dysautonomia is by no means a psychological illness. But if you have it, it can severly damage your mental strength.

[emartins]

Yes! I read something recently about how somatic hypervigilance can make symptoms worse, but I don't remember where it was.

[stephsurf]

Definitely yes!! I experience it every day, how much difference psychological factors make...

When I was very sick and started to walk again outside of my apartment house, the further I walked away from the house, the more "potsy" I felt (but not just the feeling, also the heart rate!!). Already after 3-4 minutes I was often in fully blown panic...

When instead I just walked up and down in front of my house, I could walk up to 15-20 without any worsening of symptoms (and without rise in heart rate!!).

Don't get me wrong: POTS/dysautonomia is by no means a psychological illness. But if you have it, it can severly damage your mental strength.

Hello,

I think this is such a fantastic post for where I am right now. I got into quite a big downward spiral from just constantly worrying about every little thing that was happening in my body I think I've become hypersensitive like in the post above mentioned.

I can totally relate to your experience of going out the house. Exactly same thing happened to me and I just need to stop thinking so much and think what's the worse that could possibly happen but obviously that's very difficult.

I also think sometimes I think feeling mentally normal as in not having a little bit of anxiety all the time Is a strange feeling as I'm not used to it so sometimes as silly as that sounds so sometimes I'm like "what's this? Is this how calm is supposed to feel or is this not normal?" I guess because it's been so long I've mind if forgotten what normal feels like.

Hi, I haven’t been on the forum for months, as I have been feeling much better, just thought I’d pop back in here today. I thought it was the Mestinon, but last week I decided to come off it to see how I’d react – and I’m doing just as well! I’m definitely not completely better – but I’m incomparably better than I was a year ago.

My interpretation of why I’m better is firstly just time, and secondly getting into a sort of upwards energy spiral. The mestinon was initially a big energy booster, which then boosted me into have a more active lifestyle etc.

I think the worst thing about being ill is getting into a downwards spiral, and arranging (not through our fault) all our lives around the illness, through diet, exercise, carefully measured activities etc. Recently (only possible because I was feeling slightly better anyway) I decided to ignore all the diets, not go so nuclear on the salt, to stop timing my daily walk and so treat it less as a necessary exercise for the illness and this has definitely helped. I feel less controlled/ governed by illness, although I totally understand this isn’t possible for many.

I’ve noticed that when I want to/pretend to appear healthy in front of people, I genuinely feel more energy, whereas when I’m worried people don’t take my POTS seriously enough I actually feel much worse. Also the more attentive I am to how I'm feeling the worse I feel. This is in no way implying that it is psychological, nor that an attitude can cure, I’m not sure why this is. Anyone else get this? It’s been something I’ve often been aware of but that is quite hard to accept - and which I would only discuss with other potsies, NEVER to anyone else since then they would say it's all psychological and other ****

This is a fascinating article in the NYT about the relation between the mind and body, hopefully some of you will find it interesting from a POTS perspective. Would love to hear your opinions.

http://www.nytimes.com/2014/10/26/magazine/what-if-age-is-nothing-but-a-mind-set.html

If the link doesn’t work, you can google ‘What if Age Is Nothing but a Mind-Set?’

I also agree Galatea! Getting up at 9am for a dr's appointment even though my sleeping schedule was all back of front (since I'd usually feel better at night so go to bed later, hence get up later) if actually feel for a few hours more mentally alert and with it. As a result I'm trying to reset my body clock. Has anybody had to do a similar thing/tried out melatonin? Would be interesting to hear some similar stories.

[imre]

Glad you posted this galatea, I agree with everything you say. Sometimes I even feel that when I am feeling bad taking on a task can actually make me feel better. And you spot on about how organizing your life around the illness only makes you feel worse.

I would be interested in reading about how somatic hyper-vigilance effects symptoms.

[stephsurf]

Glad you posted this galatea, I agree with everything you say. Sometimes I even feel that when I am feeling bad taking on a task can actually make me feel better. And you spot on about how organizing your life around the illness only makes you feel worse.

I would be interested in reading about how somatic hyper-vigilance effects symptoms.

Totally agree. I actually find that watching the TV I am more aware of my symptoms that if I were to be practically doing something. I've found that in some cases recently if I'm feeling bad laying down or moping about I actually feel better once I've started to do something even though I feel like I don't want to do anything! If that makes any sense? My neurologist also mentioned it seemed like I'd become rather hyper vigilant. But I think once in that state it's difficult to get out of!

[Goschi]

Being hyper vigilant AND being alone with yourself definitely can make things worse.

I remember one incident this summer - it was one of my first longer walks around my neighbourhood (about 20 minutes) and I came back to my apartment house feeling extremely potsy, sick, nauseous, dizzy, etc. I was really afraid If I could make it back to my apartment.

However, in front of the entrance door to my house I met a neighbour. Not now, I thought to myself and really panicked. Anyway, she started a conversation, and I joined. We talked for 5-6 minutes - and I actually started to feel better and better... In fact my symptoms didn't really go away, but being distracted helped so much. I finally came back to my apartment and felt very happy, relieved, and proud of myself...