Update on Alienor’s Retraining

[Alienor]

First of all: it’s hard and it will take me a looong time. I went through all the training sessions once in the meantime and have started from the beginning again. I learned a lot about myself and if Ashok ever needs a bad example for someone who unites all the typical features of a CFS patient - which he mentiones in his book - in one person, then I’m his poster girl!

It’s not that I had MANY negative thoughts about my illness. I had ONLY negative thoughts! Since 6 years I had done nothing else than research about my disease and indulge in negative thoughts. This was my life and there was nothing else (except my work). It’s not so easy now to pull another, positive, life out of the hat in one second. Therefore, I know it will take some time but I’m working on it.

Also, it doesn’t help that I have to be at work fulltime – (I don’t have much to do, which is good in one way but it leaves room for many negative thoughts out of shere boredom).

Before Easter I had found a certain routine to do my retraining and felt really better. Then, my 14-year-old stepson came to visit for one week and to entertain him, I courageously suggested to go to an exhibition. I hadn’t been able to go anywhere anymore since about two years and I was afraid I wouldn’t manage but with lots of Stop-Stop-Stops before, I was able to stay there for 1,5 hours with no ill effect afterwards!!! My stepson was more tired than I was afterwards.

We also went for some walks (around 30-45 mins - no PEM!) and I ate ice cream in the sunshine like the other people which felt weird (in a good way) because it is a long time since I was like other people.

But with another person in the house for 1 week I fell out of my retraining routine and anyway, I felt better so I didn’t retrain much and for sure, the week after I was back at square one. Then came the depressions and I had no chance to control my negative thoughts. But now I’m back on track again.

One interesting thing that I have noticed: before I fell really ill six years ago, when I had negative or fearful thoughts, I used to get kind of a shooting pain in my chest. Then, when I was very ill and I had these negative thoughts all the time I didn’t feel this pain anymore. Only these last days I have noticed it again several times when I get negative thoughts. Now, I can really feel this “adrenalin”rush again.

I think this is a positive sign and it shows that now my “adrenalin” levels are not high all the time anymore. Did any of you also notice that?

Also, I’m still working on my hyperventilation problem and I’m not yet able to do the meditation as I still tend to panic when I pay attention to my breathing.

Alienor

[Normandy]

I understand so well how you feel!

I am new to the Gupta Programme and I was so full of hope.

When I leaned the AR technique, I wondered how I was going to apply it as like you, ALL MY THOUGHTS ARE NEGATIVE! Not only about my illness but about everything! Short of going "Stop, Stop, Stop" all day (which I did) I couldn't see how it would work.

Nevertheless, I got better very quickly (one week) but I think that was more thanks to the alternate nostil breathing and meditations (especially the "Soften and Flow)".

Again like you, I had a visit from a friend (see my post about "toxix friend") and was worried whether I would cope. It went quite well, better than usual, but of course with somebody in the house, the Gupta Programme went right out of the window... (although he was very helpful, shopping and cooking for me and not letting me do anything).

Now he's gone, I find I need to start all over again. I think I've had what Ashok calls "glimpsing": I fell so distracted (from my negative thoughts)by my visitor than I almost thought I was well again.

Now, just a few days later, I'm feeling very depressed and lacking motivation to go back to the programme. The positive is I know it works but the negative is the smallest thing can send me back to square one.

I think I need to develop a daily routine with the programme and avoid distrations (visitors?) while I do that.

I know it was very early days for me on the programme (10 days) before my friend's visit but I cannot help wondering when/if I will ever be able to deal with certain situations.

I have recently retired but haven't been able to work for the last year (becoming housebound then more or less bedbound for the last few weeks).
The phone ringing or any loud noise send me into a panic. I can no longer watch TV - luckily I can still read.

When do you know you have recovered enough to deal with visitors or deal with situations that need urgent attention?
My front door lock is broken but I cannot face ringing up a repairman and I cannot bear the though of him coming to my flat and having to appear normal.

I have been on my own so long (mostly in bed, reading) that I think I've developed a social phobia.

All the best and good luck with the programme

[niaholt]

Practice, practice is the only way to overcome the negative thought s. It has taken several years to collect them. Eventually you will get to a more manageable level with them. I notice there are several programs and books now talking about the Amygdalas role in general anxiety and depression. I dont see any other way of managing this illness as over 20 yrs I have tried everything possible.

I personally believe exposing yourself sensibly to life is the best way to cope with this illness or the Amygdala learns to think that everyone and everything is dangerous and going to make you sick., pouring out adrenaline to face the "crisis" This is the misguided Amydgala doing its job but you have to give it other concrete directions or you do build up social phobias that are hard to break.

So many of us CFS people have been confined to home for years, seeing next to no one. In most cases it did not serve us any better. Gradual exposure I think is the key...doing continual ARs on it before the visitor arrives days before or outing....telling yourself you are going to enjoy the experience and relax about it.

I am trying to learn this more every day. We have patch in a Community garden. Physically I cant do much in it so when I do go there, it is to socialize. I grab some poor unfortunate person to practice on, quizzing them about their plants just so I can get social interaction.

They may teach me something about the world and I can interact whilst practising how to control the adrenalin rush I get when I get excited. I go home feeling part of the universe after a 5 min dialogue. Once I ran away from people scared if they spoke to me I would collapse and be exhausted for days.

I have been getting a lot of books from the library on managing fear and anxiety and they have helped me a lot to keep on track with GAR. Face the demons. Ashok says fear stands for False Evidence Appearing Real and it is true.