Dr TL asked why I cried. If I felt anger. If I was scared. I couldn’t really answer the question because I don’t know why I cried. I didn’t feel anger, but I was frustrated. He also asked if I feel humiliated. I recognise the feeling, but I don’t know why I feel humiliated when I get Dysautonomia crash… (I’m not diagnosed with Dysautonomia. But please allow me to use the term as I have no other way of explaining it.)
He checked my leg for sign of oedema. He asked if I was in pain. I said no. I was just very weak. I had dizziness and dull headache while I was in the waiting room. But they were gone once I lie down.
Since I was a child, tears were always the reaction to Dysautonomia crash. I thought fear and tear were symptoms come with the crash. Dr TL took this answer as I was hiding my feelings from him.
He assured me that he was only trying to help, so that he needs to know how I feel. I wasn’t hiding my feelings from him. I really didn’t know what I feel and why.
I was a little confused. Wouldn’t everybody feel the same when our body cheat us and when we suddenly lose control over own body? What other reaction am I suppose to have?
He touched on anger issue again. I believed I have passed it since I’ve gone through grieving. But while I was talking with him, I realised I am far away from past grieving process. I just became very good at not thinking about how my life is affected by ME/CFS. I am not brave as my friends compliment sometimes.
I was still confused about his question; why do I cry? I recognise a little bit fear, chilling isolation, massive amount of frustration, and I do recognise humiliation. Why?
Then, we talked about energy. He commented that everybody has enough energy and it increases when we do more. That is healthy people’s energy. They have so much of it and they don’t need to think about it. On the other hand, I have only pity amount of limited energy, and it doesn’t increase with exertion. I divide my “pity little amount of limited energy” into two; one part is to do something and the other part has to be kept for recovery. I have to be very careful choosing what I would do with my energy. I also need to rest a lot to save up energy for some exertions. If I get into energy debt, which I use energy for recovery for exertion, it will take much longer to bring the energy level back to my pitiful energy balance. Once I get into energy debt, I will be charged interest and overdrawn fee as a punishment. While I’m in energy debt, just beating heart, breathing and maintenance function takes more energy out from me. I cannot afford to use the energy for digestion. While I was explaining this, the frustration caught me and tears kept coming out. I felt anger. Yes, it is a clear sign that I haven’t done with grieving yet.*sigh*
He realised how trivial exertion like short walk from a car to the clinic can be critical for me sometimes. He checked if I have disability parking permit and how long it is before it expires. He double checked that I do most of grocery shopping with online. He remembered that I had a bad experience with them. I told him that I haven’t seen the scary man anymore, so I’m quite happy with their service now. Occasionally, I still need to go to the local supermarket to pick up small items and go to the Chemist to fill prescription. That is about it. I don’t go out. I cannot go out for fun.
He asked if I go to park. I cannot go to park. He asked if I’m worried getting stuck there. I worried about it, too. But the main reason why I cannot go out is because I don’t have enough energy to go out. Fear is not stopping me to go out, but my physical condition is. Some days, I don’t have strength to pull wheelchair out from car boot before I worry about energy level to push the wheelchair to the destination. It is continuous estimation that healthy people even don’t have to think about.
He asked when was the last time I collapsed in public. It would be today in the waiting room. I know nobody realised it until I had to get up from the chair.
Dr TL estimated there must be about 15% of gray area that I could do something for pleasure. 80% needs to be kept for essential every day tasks and recovery from them. Then, I use 5% for meetings with him. He wanted me to think about the things I could do with the 15% of gray energy. I asked if the activity could be something I may be able to do when I get little better than now. At the moment, there is none. He accepted it. He thinks we could do something about my life from there, and it was my homework this week.
Probably the expression of my frustration surprised him. I told him I’m usually okay if I don’t think about the limitations. Then, he blamed himself for making me think and cry. It was okay because he was trying to help me.
We tried PFM. He gave instructions, and my performance slightly improved as I followed it.
We enjoyed a little chit chat. It cheered me up greatly.
When I got home, I drifted into deep thoughts why I cry when Dysautonomia crash happens.