Haven’t had a great day, well couple of days actually. I think the shock of what’s happened is kicking in. The utter crushing disappointment encapsulates me like a cold, wet heavy blanket. I woke this morning to the pity party for one, with a carpet lined mouth and feeling hot although my temperature is ‘fine’. The doctors come round accompanied by the Registrar who Is very scary looking. He is massively tall and big, with black greasy slicked black hair, plus today the added joy of him holding a white hanky over his face as he has a cold. I catch sight of his very bloodshot eyes, it’s quite hard to make eye contact with him. The Sister looks rather bemused as I catch her staring at him. That aside, he is quite nice and tries to reassure me with the usual platitudes of ‘early days’, ‘keep positive’, although he did add that I’m quite unusual as I am quite healthy, most people starting this journey are very ill. I dont feel healthy. I feel broken.
I fall asleep to my meditation app not realising I haven’t said good morning to Stephen. He phones the ward to be told I’m very depressed, they don’t wake me to say he’s phoned and so he comes up – it’s just 10.30am. I know this has wrecked him too but sometimes I don’t have the energy to prop him up – we are like dominoes, so if I’m down, he is down – I expect that’s normal when you have been together as long as we have. We haven’t had a great couple of years and I know he is trying hard to make me believe things have changed as he is just so grateful to have me here. My Consultant called just as Stephen arrived. I said I was upset as the high output but he said not to worry, that even though it seemed a lot, it actually wasn’t. Your gut produces about 4 litres of fluid a day so if 500ml was coming out of the drain, then that was OK. He told Stephen to get a wheelchair and take me outside for fresh air. We don’t make the walk as I have another visitor and after she leaves I fall back into a deep sleep.
Come on body wake up and start healing, I want to go home to my family, friends and put this nightmare behind me.
I then have a very quick visit from one of the Outreach team, they are the team of lifesavers who turned up That awful day when my lungs packed in. He said I looked amazing, more like a visitor having a sneaky nap, than a patient. He said again how lucky I was and how they still talk about it, someone was looking out for me that day as most people don’t survive. I was glad to be reminded of that as it maybe explains why progress is so slow, my body went to its lowest ebb. He’s coming back tomorrow.