Posted 3 years ago
HI Blossom,
I so understand what you say, I can remember a few months in someone telling me that it would last about 3 years, I thought absolutely no way I couldn't cope. But I suppose that I didn't really have a choice, there were many times when I was frightened for her life and I could not see a future it just seemed a dark tunnel however I was very determined that we would get through it and I diid. I was quite pragmatic, completely putting myself on hold, it blew a hole in family life, I lost work, but I was determined.
I was also pretty rubbish at being around her in the early day as she has always known exactly which buttons to press on me to wind me up or even to get what she wanted from me. When in those early days we were trying to plan meals, she would always test me when it was meal times she would test me always pushing. seeing how far she could go. But all of this was because she was so ill and so desperate and I realise now that as horrible as she was being to me she was much harsher to herself. I would do it differently with hindsight - I would try to do more planning of meals and activities so that there were no surprises.
The long and the short; initially she went into a not so strict unit, the next year she went into a brilliant unit where they were clear, straight forward, no mess and that is why she recovered. I was so in the dark, I was so frightened and I made mistakes, that has been a motivation in my work for EDA as the key thing is to learn about the illness, to learn about approaches so that you are better informed so she is not a step ahead always.
I would also suggest being clear with her about where you boundaries are, I felt afraid that if I was too harsh or stern, or unbending that she would run away or hurt herself, I was afraid to do it,. But one day when she was in the unit I had a call saying the she was messing about and not gaining weight and if she didn't gain weight then she would be out. At this point I said to her during a phone call that 'I can't do this anymore' that did seem to pull her up not a miraculous transformation but a more thoughtful approach and she di gain weight marginally each week. So I would advise being clear where your boundaries are.
I would also strongly advise somehow having time for yourself, I know that this can be hard as my daughter needed to know where I was all of the time my presence gave her a security I am not sure that this was the right thing to do for myself, so if you can get others to stand in so that you can have a break that would be good. maybe there is an evening class that you could go to, just a distraction , something that is set up and therefore you have to go.
I would like to think that I would do it better now, I just hope that I never have to, wishing you the best