I am in my 50’s and have #HereditaryPancreatitis and other hangers on illnesses and disability caused by this.
My mother knew when I was a baby that something was wrong and it was probably that . I started vomiting formula between three and six weeks and the serious pain started at three. It took til I was seven to be diagnosed fully.
My life has been full of “unfinisheds”. School , various college courses , I qualified for art school but was not allowed to go. I have never properly finished a probation at work, been made redundant 6 times and had a full hysterectomy in my twenties so no children, therefore busted #Relationships . I was very lucky to meet my husband in my late twenties and we are still together.
From 2017 to 2021 I had the best years of my life. I was not being admitted to hospital 4 /5 times a year and was living a ‘ life” of sorts. Using I’m morphine at home to “live” a life . I was not frightened of doing things, eating, going places and life was good within my boundaries. Then I had my first #COVID19 jab. It floored me . Within two weeks I could not eat at all and spent 4 months in hospital. Then around Nov 2021 I was discharged on a tube feed. I was putting on weight I went out with a friend for coffee twice . I felt I was getting my life back. Then all of a sudden a phone call from a pain “consultant” he was taking me off my opiates in line with new legislation, all of them . No titration , no discussion . Worse still the local hospitals then refused to treat me. Christmas was hell , pain vomiting, and withdrawal. I was not allowed to contact him , he would not discuss things with me my husband or gp. I was not his patient and yet he had the right to do this. My health deteriorated very quickly , I lost 22 kilos in weight , became very emotional and lost everything and to top it all my brother took my family away from me including my mother , who has altzeimers. I am now no contact with them all. He is a narcissist who controls my mother and his family. But by the grace of god, he never got this I did. He however used to fake my symptoms to get attention , time off school. We are finished he has told people I have bi polar and am a drug addict.
So here I am a long way from home in hospital for 3 months. Because I can no longer have my medication at home. I contacted NICE, who confirmed that the new legislation was not aimed at people who already had been on opiates , but should only be applied to new patients . My GP won’t listen .
I have not eaten or drunk for 18 months. No going out , no seeing people tube fed . I live in hell .
So life for me and my husband is over. No pain relief , no life. No family. . Over …………….