Poor sensor / poor perceiver

The last 4 months were rough for me in term of asthma. 3 big attacks, intubated every time and the last one went wrong. I wasn't sedated enough, they use the ""normal"" dose of sedative and I need a bigger dose so I was awake and I felt everything. I stay a bit traumatized by this experience.

When I have an attack, I have many hours, sometimes many days, to react before it gets to the point that I need to be intubated. The problem is that I'm a poor sensor according to one of the pneumologist I saw. According to my psychologist, I'm not just a poor sensor, I have psychic dissociation mechanisms in case I feel I'm in danger or in distress. When those mechanisms are ""ON"", I don't feel emotions, distress, pain or, when I can feel it, it's kind of a numbed version of it. These mechanisms kicked in when I have hard times with my breathing.

Because all my feelings are numbed or just absent, when breathing become hard I perceived it as an discomfort. If I tried to use a scale like 0 to 10, 0 = breathing very easy and 10 = breathing is too hard, I can't graduate from 1 to 9. For me, it's the same feeling. I know when I'm at 10 because I feel too tired to breathe.

I tried to explain this many times to my pneumologist, but she doesn't understand how far it goes.

I tried to find someone in a similar situation in regard to the (lack of) perception of breathing or someone who have clues to help me evaluate my breathing.

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Hi there,

I can sympathise as I also have issues with dissociation.

You need to check your peak flow 3 or 4 times per day, and that way you'll have 'evidence' of how your breathing is rather than having to rely on noticing it. Set a reminder on your phone or computer to force you to do it. I'm surprised your specialist hasn't already suggested this? It would be worth getting a peak flow meter that also measures FEV1 as this ensures that you do a 'proper' blow each time.

I've got better at recognising when my breathing is going downhill, but still have problems noticing other kinds of pain/illness sometimes - especially if they come on gradually.

If you try to think of your asthma as being like diabetes - a diabetic can't always rely on how they feel to estimate their blood sugar, instead they have to test it before and after they eat and exercise. Some of us need to take the same approach to breathing.

hth,

Cx

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I check my peakflow at least morning and night, and I record my values in the peakflow app on my phone and in a excel sheet on my computer. At the last appointment, my pneumologist said that I check my peakflow too often and I just need to check it once a week. I'm a bit stubborn and continue to do it at least twice a day.

On the other hand, even with a really bad PF, I don't react. I dissociate at a point I become totally impassive. Before the near fatal attack in March, I was able to react when my breathing become uncomfortable or if my PF drop. I already had all the dissociation mechanisms but not at the point that it is now.