Jenny came out of hospital on Thursday 14th April. She had originally been admitted by her doctor as an emergency admission into the Acute Medical Unit on 7th April. She has come out of hospital in an even worse condition than she went in. We hope the damage isn’t permanent.
Jenny was in a very vulnerable position as she was barely able to talk. The many doctors she saw were bullying and abusive and (even admitted) that they didn’t know anything about M.E. They told her to get up and exercise and that there was nothing wrong with her. However, there was 1 doctor on the Acute Medical Unit who was nice to Jenny (who saw Jenny’s body’s reaction when they made her sit up for the chest X-ray – Jenny blacked out and her body went into convulsions).
She was then moved to Guist Ward for the weekend, where they were measuring her fluid input and output, taking blood tests etc. None of the nurses or doctors really understood M.E. and she had to try to educate them. The noise and constant activity of people coming into the room and making Jenny do things has completely physically decimated her body. There were one or two kind nurses and doctors, but they were few and far between. It was not nice for Jenny to hear doctors and nurses whispering things about her outside her door.
She was then moved to Dunston Ward on 11th April, where they would be able to perform the gruelling test for diabetes insipidus (nothing to do with normal diabetes or blood sugar). 1 (newly qualified) doctor on the ward apologised to Jenny for the way another doctor had spoken to her who had told Jenny to get out of bed and exercise. The nurse who supervised the test was kind and had to do the 12 hours all by herself as her normal co-worker couldn’t be present. 2 doctors took it in turns to stay with Jenny as suitable heart monitoring equipment was not available.
We so hoped that this would be a turning point for the better but the way the health system works is that you are referred by the GP for a particular test and when that test is completed in that hospital department, you are referred back to GP care, even if there are other outstanding or pressing health concerns still which would warrant investigation. So although diabetes insipidus has now been ruled out, we don’t know if the GP will pursue the Postural Orthostatic Tachycardia Syndrome (POTS) again or not.
Jenny had not slept at all since the 13th March and when she went into hospital they put her back onto Clonazepam, which gives her 2 broken hours a night. As you can imagine, the sleep deprivation is hell for her. Her heart symptoms continue to be unbearable. She is utterly wiped out. It is difficult now for her to even open her eyes.
Thank you again for thinking of Jenny.