I can’t say anything without first mentioning the judicial review of the NICE guidelines for people with CFS/ME that is taking place at the High Court in London at the moment. I was first made aware of this by reading about it over at NMJ’s, and I had wanted to go along, give my presence there, as so many other PWME are doing. As it is, all I feel able to do is bring my awareness to the proceedings.
I am on Shrink duty again today. If nothing else, I have probably managed to bring a degree of enlightenment to him as to the nature of this particular illness, but it has been and is frustrating. I sense that he still thinks of it as a kind of smokescreen for other issues, rather than as a Big Issue in itself that does not live in isolation from everything else but carries its own unpredictable agenda and does not distinguish between good and bad stressors.
Thinking about the medical profession, Shrinks etc. takes me back to the time when my first baby, my daughter was born. It was an intensely joyful as well as an intensely difficult time. She was born by caesarean section after I had been in labour for a long time, in the Mile End hospital which was in such a sorry state that they actually ran out of nappies and formula milk (which every caesarean mother is likely to need at the outset because things take longer to get going). The nursing staff treated us as though we were criminals. Those of us who were unable to get up and fetch a cup of tea from the trolley were told to either “get it yourself or go without” – apply that kind of attitude to other situations and you get the picture. As I wasn’t healing properly the doctor said I needed to have complete uninterrupted rest, and the nurses’ response was to take my baby and shut her in an empty office unattended. Desperate as things were, on hearing her cries I staggered out of bed and hobbled along the corridor to where she lay in her Perspex box next to a room where the staff were boozing and having a smoke. I wheeled her back to my bedside and the next day we checked out, five days before time but I actually thought we might not survive a longer stay.
Various health visitors came to call. My baby had colic and woke through the night so I often took my sleep when she did, during the day. A young (childless) doctor, on hearing me express sadness that my child was suffering the pain of colic, coupled with the way I looked (sleep deprived) decided that I might be about to do myself in and sent a team of health and psychiatric people to investigate. Fortunately they came on a day when I was bright and cheerful, in the company of a friend, my baby dressed in her pink going-out suit, ready to take a walk. The health visitor told me I was not permitted to leave the house until I had talked to the Community Psychiatric Officer and I suddenly realised that baby and I were in imminent danger of being hauled off to a psychiatric unit for investigation and possible incarceration. My friend, who picked up the gist of the situation kept the health visitor occupied while I talked to the CPO who, I discovered, was interested in literature and had a particular fondness for the plays of Shakespeare, particular the later tragedies and a couple of the major comedies which I had just been studying at university where I had been as a mature student. Reader, Shakespeare saved me, or perhaps it was the Prince of Denmark who did, along with various clowns from the Forest of Arden. I was prepared to bend the ear of the CPO with literary insights for as long as it took to convince him that I was absolutely straight-up normal ticketyboo (I had worked as an auxiliary in a psychie unit and knew what might lie in store), and it worked. At the end of an hour or so, he shook my hand and thanked me for my time, giving me a clean bill of mental health, to the chagrin of the health visitor who had been looking forward to something a little more interesting and was miffed that I got off so lightly. Several months later the young doctor responsible for the shenanigans sent a message to apologise. She was pregnant, having complications, and realised how unhelpful her intervention might have been. Which was nice of her. But still, I sometimes come out in a sweat thinking about what might have happened.
The CPO went on to do an Eng Lit degree. So it goes.