This illness is turning out to be a very strange journey and is the most difficult thing I have ever had to tackle in my life. A game of two halves.
I feel like I am two people, the sick patient and then Rosie, the wife, mother, lawyer, person. The connection is weak and I feel torn in two.
Consider this; when discussing with my therapist the possibility of cutting down on the time I spend in hospital, she suggests instead I should think about becoming an inpatient (erm…no), yet at the weekend with my family, my illness is not referred to. I feel I am ill, yet not ill. A broken leg or a cancer would be evident and those around me would make changes to accommodate, but my illness feels unmentionable; it is the elephant in the room and people are afraid to even ask, ‘how are you?’ Or ‘how’s the treatment going? If only they knew all I want to do is to talk about it, but this is a burden I do not want to drop on anyone. I feel trapped by the invisibility; yes I may be thin, but I seem ok, while inside I am screaming.
At home I can sometimes be me, yet my time in the hospital is almost hidden from view. There’s a huge part of me that no longer exists. I don’t have any self esteem while being cared for. I used to talk about work, my plans and hobbies, but I am now a non-person. I am grey and uninteresting. In the hospital am told what to eat and when. I am only allowed to use the toilets at specified times. I can’t go out and walk and walk which is what I really need to do. I have to fill in endless hours with colouring and puzzles. I am a professional woman, yet if someone were to buy me a new puzzle book I think I would cry with gratitude. This is what I have come to.
Discussing the possibility of hiring bikes to cycle round the city walls of Lucca with family no one bats an eyelid. I feel I need to do these things so I don’t let anyone down. Going out for lunch with a dietician in tow, (wake up, how strange does sound people?!), I mention this plan and get a very firm response; this is not acceptable. If I am honest, the whole holiday is deemed unacceptable by the medics yet in the other half of my life it is simply a fun trip. Again, I am torn in two. What is right and what is not? I no longer know.
The agony of knowing that there is so much to do around the house, there is always a pile of ironing, weeding, cleaning, washing, bed changing….constantly being told that I should not be doing these things feels so combative yet how can I leave my poor husband to do everything ? I am forever worrying about what needs doing, and feeling guilty that I should be doing them, yet knowing that to recover, I should be doing nothing. Guilt abounds either way.
The turning of relationships from the carer and planner to the cared for, whose sickness is unmentionable. The painful parallels with childhood. The constant panic that I have ruined my career, and that I will never be successful again. I am working harder than I ever have to come to terms with these things and to recover, and yet I am doing nothing.
Another week looms, here we go again….