I stand on the brink of massive change again. A feeling I know well enough, a feeling like I’m silently slipping without direction. Although I am more used to it now the strength of my overwhelming emotions still completely flips me out and I am vulnerable once more.
Throughout my childhood and younger adult life I have experienced repeated trauma and abuse yet I somehow struggled through; an eternal optimist dreaming of a knight in shining armour who would rescue me and take me away from the life I had to live. It was England in the 1980’s when children didn’t really have their own identity or rights. I trusted in those I shouldn’t, some I should and an in an overwhelming connection to the earth through a universal purpose which seemed to somehow steer me away from adversity and into strength in the most unexpected ways. I guess I was like a cat, but unlike a cat I seemed to have more than 9 lives!
It is this strength in adversity I wanted to talk about and I have wanted to share this story for many years but currently only have the courage to do so anonymously through the shame I feel but then I ask myself why do I feel ashamed? I was poorly; do we feel ashamed to have physical illnesses? Why is mental health any different? I am hoping that by sharing about my experiences it will encourage others and encourage me to keep sharing. I went through hell but have come out with a story I can use to hopefully help others. The brink I currently stand on is not created within me but in the happy occasion of securing a Peer Support Role on a female inpatient ward at a mental health hospital. It is important to note here that any massive change can be challenging; even a positive one and in my new role I will be the person I wished I had during my admissions, a person who understands and who has the time to talk.
My negative experiences led me to become very poorly over and over again and I can’t remember how many times I survived lethal overdoses, self-harmed significantly or ran away and I’m sure the eating disorder voice in my head will probably never be silent. I had many psychiatric diagnoses up to 2011 including anorexia, bulimia, post-natal depression and chronic recurrent depressive disorder. I have also had physical health issues all my life; scoliosis, hypermobility, congenital rib defect and poly-cystic ovaries then more recently osteopenia, osteoarthritis and radiologically isolated syndrome! However, although that list sounds exhausting I am amazingly well with it all and can still walk, do exercise and enjoy life! I have fostered an attitude for gratitude and an annoyingly positive attitude. However, this story is focusing on the day it all went wrong…
I took my first overdose aged 16 and struggled with overdoses thereafter as well as eating disorders and physical self-harm. My early 30’s (a couple of years after the birth of my second child) I started with hospital admissions, after more acute life trauma, and by the time 2011 came around I had been in and out of inpatient mental health wards more times than I’ve had hot dinners. One admission lasted around 6 months and I was offered ECT (which hubby thankfully talked me out of). Every time the tablets didn’t help I was shoved on more medication and at one point I was on around 6-8 different medications. It was amazing that I managed as well as I did because I was, quite frankly, off my face.
It was around this time the osteopenia was diagnosed after I stood up, twisted my ankle and broke straight across the two leg bones; I was put in a cast. However, once the two weeks were up they didn’t put me in another full cast but one that could be taken off and my leg could be washed. Sounds fair enough but it completely freaked me out and I started having psychotic breaks and hallucinations so badly that I gave up hope and I threw myself down the stairs.
In A&E I waited, waited and waited some more; eventually being sent for a mental health assessment. I had arrived at the hospital early afternoon, had refused to eat or drink and by the time I had been transported and assessed it was around 2am (12 hours later!) I have no memories and no idea what I said to the Psychiatrist but he let me go home (after assessing me with just us two in the room). My Mother begged him to keep me in but I must have convinced him, somehow, that I would be OK.
We got home, I went upstairs and went straight out of the window.
I had broken my entire spine and skull needing metal rods inserting and I had three massive bleeds on my brain. I now know that I was having a complete psychotic break on the day it all went wrong. I received no support coping with life after spinal surgery or brain injury and because I was mentally unwell for some reason that was the medical world’s main focus. I didn’t even know the extent of my injuries until I asked for my records a few years ago and I still relive the trauma of the fall in my nightmares and the window remains locked.
Recovery was hard and especially harder on a mental health ward not geared at all for the physical and mental health fusion; no person centred care. It took days to get the right bed, my clothes all went missing, I struggled to get food and carry drinks, to get washed (asking for a bowl of warm water was like asking for gold) and some staff were truly horrible to me; you get the picture. The treatment was so neglectful that when I was discharged around 4 months later my back wound was still open and infected because the nurses wouldn’t listen to me and change the dressing more frequently. Nearly every morning I woke up with my own infected puss against my back meaning clothes and sheets needed constantly washing and changing which I couldn’t do. It was appalling, they wouldn’t listen to me and to discuss it all I would need to publish a book.
The reason I am sharing this story though is because many amazing things came out of this experience;
- I finally got a proper diagnosis – Borderline Personality Disorder which eventually let me access Mentalization Based Therapy which has revolutionised my life
- Fracturing my skull led them to see a white spot on my brain which led to my diagnosis of Radiologically Isolated Syndrome for which I receive medical support
- The complaint I made meant my local hospital started a mental health liaison team onsite which is now being rolled out nationally as RAID teams. The same hospital are now opening a separate area in A&E for people with mental health with its own entrance
- The metal rods inserted into my back will help me stand straighter for longer with respect to my scoliosis
- Although it was hard I got to spend a year at home with my husband
- I joined my local service user network and helped design the new mental health hospital for our area, I co-deliver training to professionals on Personality Disorder and I wrote a course for the inpatient Recovery College
- I am a published author on a UK website’s mental health pages
- Plus much, much more and as an eternal optimist – there is more to come!
I am passionate about mental health and helping develop better strategies and outcomes for people who are NOT JUST their diagnosis. It shouldn’t have to escalate to the level my illness did in order to get the correct help and diagnosis. I am 44 years old and I have BPD, dissociative disorder and an acquired brain injury, but I am also a musician, cook, wife, Mother of two and own a very fancy cat named Oliver (my motivational kitty). I work part-time in the NHS, am a trained Nursery Nurse, have level 2 Mental Health and Counselling, worked abroad in my younger years and love days out by the sea. Let’s not forget who we are and who our patients are because they forgot who I was when they treated me like an animal. I’m here to tell them otherwise and fight for those who cannot speak up!
To me, the journey of the soul is about connecting, disconnecting and re-connecting with ourselves and the world around us in a deep and meaningful way, as many times as we need. It’s OK to have days we hide and days we shine and it’s OK to be silent as well as speak. Without the pauses there would be no melody to our tunes. Thank you for reading about the day it all went wrong for me and how it led things going right.