Institutionalised by my illness

I've been talking with other people on the RT forum about how difficult it is to change your behaviour as you become well. I described is as feeling 'institutionalised' by my illness. I'll try to explain the kind of things I'm talking about.

Some days I put on my alarm clock for 7am and get up before 8am. I go downstairs, feed the cats, get a cuppa, switch on the computer and go on some forums, read my emails, surf the net etc. Before I know it, it is 12.30 and I'm still in my dressing gown. I may have arranged to meet up with some friends in the evening, but I'll get there late, despite having all day to prepare myself. I may have one or two things that I might have wanted to do during the day, but probably didn't get around to doing them.

It's so difficult to motivate myself, turn up on time, be organised etc. I used to be sharp, but I'm not now. It's like I'm stuck in a loop and that loop is: the behaviour that I learned whilst I was very ill is the thing that is holding me back now.

There is absolutely no reason why I can't get up, have a shower, get dressed and go out into the world and do things for 4 or 5 hours in a row. But actually doing it is another matter. I'm not depressed, or even feeling low, I actually feel happy. I don't think that I can't do these things, because I know that I can now. I even feel a strong desire to do them, but just can't seem to get my act together. It's not like this all the time, but I feel like I've lost my ability to focus sometimes. I'm sure it will get better as I get more practiced at it.

I've found that if I behave in the way of 'an ill person' and by that I mean the behaviour that I used to use to keep me entertained when I was ill, then I get symptoms. I get tension and anxiety and fatigue. When I'm busy, I don't get symptoms.

It's all quite frustrating. I feel as if I need to really acknowledge that I don't have M.E. any more. I say that I sometimes 'feel' like I don't have M.E. any more, but I feel scared to actually say 'I don't have M.E. anymore'. So am I willing to say that??? I don't know yet... there is a fear in being well again, like it would be tempting fate to say it out loud.

Maybe that is why so many people are resistant to trying RT in the first place, for the same reason I don't feel able to say what I just wrote here. The thought of it not being true is just too damn scary and would be too much to bear!