I retreated into the woods and could not find a way out.
I was trapped in the perfect storm – extreme physical pain due to the giant fibroid currently still in residence sitting on nerves in my spinal cord and so large it has displaced other organs. It causes very heavy bleeding which then has an effect on my blood. Lack of magnesium has been defined as contributing to my increased level of epileptic seizures
I was already in mental pain due to having to accept I have failed to find work that I can do safely and the realisation that I have been way too willing to give 100% to others and receive at best 30% back in return.
I became scared to go out so I lost contact with people. I lost contact with myself.
The past year has been about so much loss. I lost my identity when I had to go back on Benefits due to my inability to find work where I was valued enough to be supported properly with suddenly finding myself having to deal with the most toxic people and unhealthy culture at the dizzy heights of the upper echelons of the NHS. I had already lost my identity once in my old career in International Development to which I was devoted. I was therefore no stranger to workplace bullying so it was all oddly familiar to me when I started to work in healthcare freelance. What I had not anticipated was the trauma this would dredge up. My principles yet again got in my way. I am wired to speak out about misconduct and as such, meet the consequences. But do I really want to be someone who remains silent in the face of the unacceptable? Of course I don’t.
I have been admitted to hospital so many times and at others been in hospital visiting my two friends. In my previous blog I talked in detail about the impact the death of ballerina Elaine McDonald, Prima of Scottish Ballet whom I saw dance in Edinburgh when I was 7. I found myself thrown into helping organise aspects of her funeral and in particular, trying to make sure her husband, my best friend Donald, was in a fit enough state to cope with it all.
He really was not in a fit state at all. I organised coffee and buns for the contingent coming down from Scotland and then I headed for Donald’s flat to ensure he was up and ready. I got him in a car which was no mean feat. He could hardly walk so a joint effort between myself and the driver finally got him in. He was in a complete fog, only barely aware of what was happening. I got him to the café to join everyone hoping it would bolster him. I met Elaine’s brother who had come from the US. He was Producer at Abbey Road and worked extensively with the Beatles. There were people from Scottish Ballet I knew from the 1980s – in fact the café was buzzing and absolutely packed.
When it was time to head for the Church just along the road, it became clear Donald could not walk. I sent someone over to Chelsea & Westminster Hospital to commandeer a wheelchair which they kindly supplied. I wheeled him into the Church. He then proceeded to lock himself in the toilet.
In the end I felt unable to mourn Elaine myself as I was in “carer” mode. I was also in such terrible pain from the fibroid. The funeral Mass was traditional but very beautiful. Elaine’s sister who had always been portrayed as the villain of the piece had done such a good job. At no point did I feel excluded. This all started me questioning the version of events I had been given over the years. Everything seemed to be turning upside down. I felt under immense pressure to keep going, which of course I did. I am used to functioning in extremis. it is however dangerous as all the trauma stores up to revisit me after the event, when I finally get to sit down and reflect.
We went to the cemetery. I was seated in a limo with Donald right behind the hearse. I did not feel any sense of exclusion. It seems the sister privately had started a rumour that I was the Other Woman, who had designs on the tenancy of Elaine’s flat. This was of course untrue. I respected the two of them and their volatile but long-standing relationship which endured despite the trauma of Elaine’s stroke and Donald losing his identity which was replaced by one of “Carer”.
I realise that death brings out the best and the worst in people, and families in particular. I chose to ignore the nonsense and conduct myself as well as I could.
From the funeral onwards, Donald’s downward spiral continued. It was truly painful to witness. His mental and physical health was in rapid decline. I was told by his brother-in-law that he kept passing out unconscious. By this time I had decided to try to back off from any further involvement by was persuaded to store items of Donald’s property in my flat. I had his duck collection of some 300 or so items, and large suitcases of clothes.
I had a call from Donald one night in distress. He was begging me to come round to his flat. I grabbed my keys and phone, got in a taxi and arrived to find Donald in a dire state. I sat up on his sofa for three days and nights just watching him disappear into the abyss using the same destructive methods I used to use to escape from my pain.
In the end, he walked into the living room in the middle of the night and passed out unconscious right in front of me. His breathing was disordered. It was very frightening. I called 999 and he was taken away by ambulance.
I found out that he was discharged only a few days later and it seems this was because the physical issues he had were being ignored as all the staff could see was extreme alcohol misuse. This was another case of the Diagnostic Overshadowing with which I am painfully familiar. He was on a downward spiral. I could not stop him no matter how hard I tried even to the extent of being dragged down with him.
At this time my own health was getting worse. The fibroid causes heavy bleeding which in turn affects my blood and that (and overwhelming stress and sleep deprivation) led me to having frequent grand mal seizures. I kept coming round in ambulances after having a fit in the street. I would lose my memory and be doubly incontinent. And all the time the pain was more and more excruciating. Taking my own life started to seem like the only option for me to escape from it all.
As usual although clearly acutely unwell, I was rapidly discharged from A&E as soon as I was vaguely coherent & able to stand more or less upright. Of course I ended up back in again. Nothing was ever resolved fully. I was very close to taking my own life so I tried again to get help. I rang the Mental Health Trust Crisis Line as I did not want to be dumped in A&E again only to be discharged in the middle of the night. They insisted on calling an ambulance so there I was again.
I spent a night in a packed A&E. My fibroid-related pain was even worse due to being on a trolley and had not been seen by anyone so I could request pain relief. I was in a holding centre basically, somewhere to fester unnoticed while over-stretched staff did their best to cope. I was on suicide watch and those nurses really helped. They made me tea. They cared. They SAW me. It was agreed I would be stabilised physically then packed off to a MH ward. That sounded fine. I just wanted it all to stop.
I was on that trolley all night and most of the next day. I was in unspeakable agony. I had also started missing my meds as they had not prescribed anything. I remained there for the rest of the following day. Finally, the delightful psych liaison nurse to whom I owe SUCH a lot, came to give me the good news…a bed had been found. The bad news was, it was in Milton Keynes. Initially I laughed as I thought it was a joke. Sadly, it was not. After a totally sleepless night, in extreme pain, I was then to endure a two-hour car journey to Milton Keynes.
I was seen by a very nice doctor but still no pain relief – mot even a single paracetamol. He also said I was way too physically unwell to be admitted to the Mental Health Unit so I was transferred to Milton Keynes general hospital next door. I ended up in A&E where I spent a further sleepless night sitting on a plastic chair. The pain was so immense that I really could not take any more. Eventually I was moved to a bed then transferred to another bed. After all that, I had a few days being given the help with my physical state that I should have been given in Chelsea and Westminster. I started to feel gradually a bit more human. I felt grubby, had no toiletries, was bleeding heavily and had nothing to change into.
I felt like I was crumbling. I was isolated, desperately lonely and as soiled on the outside as I felt inside. I wanted it to be over by whatever means.
I was still on suicide watch and one of the nurses went above and beyond the call of duty to bring me clothes from her home and toiletries. She was GREAT. We ended up singing Country & Western songs together. I will forever be grateful to her. On the other hand though, three members of staff meant to have me under “close observation” used the opportunity to have a good long sleep including a lot of snoring. Had I been minded to harm myself I could have easily. It served to illustrate the lack of consistency in standards. I was spotting cracks in the system to avoid looking at the widening cracks in me.
Eventually, I was transferred to the Campbell mental health unit. It was a very challenging environment as I was so exhausted. It was noisy, constant blaring of “music”, & very unwell patients making the place feel very unsafe.
It felt like staff were only just coping and naturally, errors were being made. There were so many meds errors happening with myself and others, I lost count. I missed the meds that help control the bleeding. They failed to order enough so inevitable the bleeding got so much worse leading to more tiredness due to anaemia.
It was of course, not all bad. The consultant was excellent and changed my medication to something I have found really helpful. He was clear, highly competent and above all, he was kind. I felt seen and I felt heard.
I tried not to, but I ended up sorting stuff. I got the water dispenser fixed and the ward now has pyjamas in the linen cupboard. Kingsley had no idea that there weren’t any hence patients, particularly those like me shipped in from other areas, were having to sleep in outdoor clothes. Was this a distraction from pain? Of course it was but at least something positive happened as a result
I went to a group on healthy eating to show willing. It was then I received a text. It was Donald’s brother-in-law. Donald had passed out in his flat and was found by one of his carers. He was bleeding.
Donald died in hospital.
The list of things which contributed to neglect screamed to me self-neglect, self-destruction and heartbreak.
I was numb. I felt shame that I had not been with him, that I had not pushed harder to get him the help he needed. In truth, however, he just could not live without Elaine. And if he was no longer her “carer” who on earth was he? Watching him deteriorate, having him cry on my shoulder, feeling utterly helpless was one of the most painful things I have ever been through.
Then something started to change. I felt the urge to take my own life dissipate like dark clouds starting to clear. It was no bad thing that I was in exile in Milton Keynes as I could not distract myself by taking over organisation of all connected with Donald’s death. I had to sit with my thoughts. I went to the Chaplaincy in the main hospital. By chance the Chaplain was there and he talked to me and gave me a beautiful prayer. I do not associate with any particular denomination, but at that time, I needed help to make sense of what had happened. It was very helpful.
I made a decision that I would start to show myself even a fraction of the care I give to others. I chose life at that moment. I did not want to put my family and friends through the sort of pain I felt at losing my best friend to the consequences of self-destruction which I know all too well. I had an image in my mind of a closing scene of The Piano. Ada deliberately gets her foot caught in rope which was attached to her piano. The piano goes overboard. She allows herself to be dragged under the water. Then it happens. She chooses to live. She kicks her foot free of the rope and floats upwards towards the light.
Since then, I have felt much lighter. I still can’t quite believe Donald is gone. It was my birthday recently and it reminded me of all the birthdays I spent with Donald and when she was well enough, with Elaine. We would go to the river and feed the ducks. Donald would buy me stuff from the deli on the corner. I would go home armed with Buffalo Mozzarella, Italian bread and vine tomatoes.
Of course I miss him, I miss them both. There is the strange sensation that a huge chunk of my life has simply been erased. Even their lovely cat Big Boy had to be put to sleep as he was emaciated through neglect. I called the RSPCA. I sat cuddling him, gave him treats and he purred like a pneumatic drill.
Despite, or maybe because of, all of this, I have started to see light somewhere in the mist. Healing is a long process. Maybe I see there is something left of the person who had worth and that only by respecting that part of me will I come out of the mist completely.
I believe that I would not now be here were it not for the friends I have made through Twitter, my blog and the smattering of friends who have not abandoned me. I am still not great at the In Real Life stuff but maybe someday….I intend to give it a try.
I choose life.
2 thoughts on “Lost and Found”
thank you for sharing Ally. Your ability to articulate your pain will help many others who are less able. And your blogs help me make good choices. You make a difference.
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Very, very moving. I’ve suffered gross negligence by the NHS for over 10 years the worst in 2014. I needed my life saving living kidney transplant, the arrogance of two consultants prevented it, stating problem with my heart. No problem confirmed by Cardiologist, ignored, left me to go into complete renal failure, my intolerance to EPO ignored, severe ckd anaemia stopped bone marrow. I contracted TB from a Male on the ward, became Miliary and TB Meningitis. Fighting for my life, clearly now on dialysis which I should never, ever had, weight (Consumption) falling 9ff, consultant not adjusting my dry weight do kept drowning. In two carbon dioxide comas, died, overdosed on TB meds leaving me with very severe neuropathy from thighs down, no feeling at all. Neuropathy of optic nerve so left almost blind! I wasted away, malnourished, no physio even though inpatient for four months! Had to dialyse for over two years then received my perfect match kidney from husband! Both my parents died within 11 months straight after my discharge. The NHS has evil festering in it’s core and they are protected from accountability. £billions spent annually to fight the innocent who are harmed through negligence on lawyers, money no object then!!! I have very severe medical PTSD and often suicidal, being chronically ill it is an open wound.
Our stories are different however the never ending losses very similar and I lost my job, home, life as permanently disabled now and in agony physically and mentally 24/7.
Thinking of you and sending strength to you x