Alison L’s #MadCovidDiaries, 22.06.20
Crisis After Crisis, This Time Covid-19 Sent Things In The Wrong Direction
TW: Mentions self-harm and suicide.
*Names of staff have been changed
Bex the Mental Health Nurse from the homebased treatment team was sat in my living room asking me if I would consider a voluntary hospital admission. It was Friday 15th May 2020. This was the 4th time in two weeks I had been asked this. I was unwilling but I knew having there already been suggestions of doing a Mental Health Act Assessment on me days ago, there was a chance my choice and decision could be overridden by others. However, I was convinced I was not someone who would be sectioned.
Bex listened when I explained why I didn’t want to go into hospital. I didn’t want to be saved, I wanted to die. I was tired of the relentless relapses in my mental health, the incessant agitation and sleep issues. After several years of a pattern it seems only I could see, I didn’t want to continue like this anymore. I felt un-listened to every time I spoke to someone working in services. I continually questioned my diagnosis of EUPD because try as I might I could not see how I fitted into the criteria anymore. I did however meet the criteria of Bipolar Disorder, it had even been suggested I had Bipolar Disorder 13 years earlier, but once I had exposed a one off incident of trauma as a child, the Personality Disorder label was slapped onto my notes and there it remains, despite 18-months of MBT therapy and seven years of me no longer reaching the criteria for EUPD. The only traits I do have of EUPD are the ones seen in Bipolar Disorder.
Bex told me she didn’t want to leave me alone in my flat, especially since I refused to hand over the medication I had recently bought online. She asked would I go to the outpatient unit with her which was currently not in use due to Covid-19 for a brew as well as some space and time to think. She then added I could pack a small bag and maybe think about an admission, there was no pressure. I half-heartedly agreed if only to get out of my home and I threw a few things into a bag, I was considering the admission inside my head but my past experiences of inpatient stays was telling me to just persistently refuse, what was the point of an admission nothing ever changed from being admitted before, I’d end up coming out still in the midst of a crisis.
Bex drove me to the hospital in her car, a short five-minute journey. Once there she made me a cup of tea. About an hour later I had decided I didn’t want the admission. Then Tom another nurse from the homebased treatment team walked past and asked me how I was. I felt a pang of guilt. You see Tom visited me the previous Friday at home and hours later I took a mixed overdose, but I didn’t tell him of my intention to harm myself, I promised I would keep myself safe but I knew this was not going to be the case, I was not impulsive everything was planned perfectly. The police found me walking the streets at 3am near the motorway bridge overdose in process and took me to A&E. I smiled at Tom and said I was ok, clearly, I was not but I was so good at pretending everything was hunky dory. My saying is, I’m happy on the outside but broken on the inside and no one has a clue.
Eventually Bex and Tom ushered me into a side room, one of the consulting rooms I’d been in many times before for appointments with psychiatrists. They asked me again would I consider a voluntary admission and even told me there were beds on the ward and that staff were no longer using PPE as there were no positive Covid-19 patients on there, however I would have to isolate on admission until a negative Covid-19 test had come back. One of the reasons I didn’t want an admission was because of the risk of Covid-19, I didn’t care about catching it, but I cared about putting my elderly dad at risk who I cared for. I refused the admission and said I wanted to go home.
Bex then said, she felt the risk of me going home was too high and that she would request a Mental Health Act Assessment. I knew she was doing her job, but I never for the life of me thought I would be sectioned. I agree to the assessment, if only to ensure I could be left alone to go home. Bex explained I was free to leave the hospital anytime whilst they were waiting for the AMHP and psychiatrists to arrive. I sat in the waiting room and lingered as the anxiety washed over me. I started to panic that I’d left windows open, doors unlocked, things switched on, my OCD went into overdrive. I decided I wanted to leave and tried to leave but I spotted Tom talking to someone in the corridor and I wanted to avoid a confrontation. I returned to my seat and continued to let the anxiety slowly eat me up.
Tom then walked in and I said I was going home to check on things explaining I felt uneasy about forgetting to do something at the flat but I tried to reassure him that I would come back for the assessment. Tom said he would speak to Bex and see if he could run me home and bring me back, I agreed to this. Tom was gone ages, the longer he was gone, the more challenging staying in the waiting room became. When Tom returned, he said the assessment team had arrived and could I wait until they had seen me. I felt tricked and said no forcefully and I got up to leave. Tom followed me out the door into the car park and pleaded with me to come back. I repeatedly said I needed to go home but I would return as soon as possible. I then walked off to a quiet part of the hospital grounds and called a taxi. On the journey back home Bex called twice, the second time I answered as I walked into my home. Are you coming back she asked, the assessment team are here waiting to see you? I said I would be back within 30 minutes, I had every intention of going back I just needed to check things at home, no one seemed to understand the intense distress the OCD was causing me. Bex asked could I come back within 15 minutes, I agreed, and she said she would send Dani to pick me up, Dani being a nursing assistant with the homebased treatment team.
I did what I needed to do and then went outside to wait for Dani still convinced I would be back home in the hour. I admit I felt like grabbing my stash of pills and disappearing, but I knew Bex was doing her best to help me in this crisis, besides I’d be home shortly and I could carry out my plan then.
No sooner did I arrive back at outpatients and I was ushered back into the same room and shortly after the AMHP from the local council arrived along with a psychiatrist working for the hospital trust and an independent psychiatrist, they all introduced themselves. I felt apprehensive but I remained calm so I could answer their questions but the dark thoughts inside my head just kept telling me it was time to call it quits, these people might be trying to help me but more often than not they made the situation worse not better, and I had lost all faith in mental health services after my experiences in the last few years.
There was no point lying so when asked by the AMHP could I keep safe, I said no. I said I didn’t want to be alive anymore and that I had, had enough of repeatedly going through periods like I was, especially when no-one was listening each time I hit a crisis, which was usually twice a year. When I was not in a crisis, I was well, happy, functioning and sleeping. When in a crisis my life was non-existent and because of the frequency of them I couldn’t plan anything, I couldn’t work, I couldn’t even commit to volunteering anymore.
When asked about the medication I had at home, I explained what I had purchased online that week, just hours after the homebased treatment team staff had taken my other medication off me. I knew I had a combination of drugs that would be lethal in overdose and this time I was not going to leave the house and I had a fool proof plan to end my life without anyone finding me in time. In the past my biggest worry was my dad finding me, but I’d even reached a point of not caring if he did, there were no longer any protective factors to keep me alive. For weeks I’d been hallucinating my deceased mum and I was convinced like I was in 2017, she was telling me it was time to be with her, it didn’t help that everywhere I looked I could see rainbows thanks to the NHS Covid-19 situation, because in 2017, it was a theme when I was unwell, I was obsessed with them and at one point covered my entire spare room with them which I coloured in one by one often for hours at a time often during the night, now everywhere I looked I could see them again.
She then asked about the other overdoses. You see since the 1st of May there had already been three with each one increasing in severity. That was the real reason I was undergoing a Mental Health Act Assessment. The homebased treatment team were concerned a 4th and my body wouldn’t cope with it. I had hoped it would not have coped with the 1st, 2nd, or 3rd but somehow it did. The difference with these overdoses compared to previous ones was that I didn’t self-rescue, on all three occasions the police found me on the street in the early hours of the morning. Dying outside I didn’t care who found me. I scarcely remember anything about being found, I was so out of it with the combination of drugs I had taken.
The assessment didn’t last long and when they left, I was still certain I would be home before long. I was wrong. When it got to nearly an hour after the assessment, I started to be concerned then Bex appeared with a pen and paper to ask for my dad’s name, address, and telephone number. I then realised they had sectioned me as my dad was classed as my nearest relative. I asked Bex had they, she couldn’t tell me but did indicate they were looking for a bed. Looking for a bed? But there was supposed to be beds in my hometown, obviously there were now none.
Eventually the AMHP came back with Bex and explained their decision to section me. She had spoken to my dad who was relieved I was safe and who had explained why I was the way I was citing my housing issues as being the main trigger. It was only a small part of why I was in this crisis, but it had not been helped by having neighbours sitting out drinking till the early hours despite the lockdown rules. One of the biggest triggers for me is noise which stems from being a victim of anti-social behaviour many years ago. I was currently living in a flat which had not been suitable for my needs since the day I moved in. Over the years the excessive noise was often a trigger but despite trying, begging and pleading I was battling to get a move somewhere more suitable for my needs.
The AMHP said it was best if I went into hospital to have a rest and a proper assessment of my mental health, she indicated they could review my diagnosis properly during an admission. I was then told a bed had been found within the trust on a mental health unit in another city and the transport would be there around 9pm to take me there. It was now 7.30pm.
It was not until past 10.30pm when the ambulance turned up to transfer me to the ward and we arrived there 30 minutes later. It was a secure locked ward with double doors, one door had to be locked before the other could be open. So, imagine a tiny space and inside that space was me, two ambulance crew, a nurse as well as another patient and a nursing assistant who just happened to be collecting a huge delivery of pizzas when I arrived. There were six of us crammed into this teeny tiny space trying to shut one door so the other could be opened, this happened twice before we reached the ward, so much for social distancing, I was trying frantically not to breathe in.
As I was walked through the ward, the nurse told me I would need to stay in my room until I had been tested for Covid-19 and a negative test result had come back, but not to worry as this is generally within 24 hours. There were three rooms located at the back of the ward reserved for new admissions, I was put into room 13 and both 14 and 15 were still empty. There was chair in the corridor located just past the shared bathroom, this was to mark as far as I could go. I was told a staff member would be sat in the chair 24/7 and if I needed anything I could just ask.
Upon entering my room, the first thing I noticed was how bright the ceiling light was, the graffiti on the windows and lack of curtains. Other rooms had curtains I had noticed when we walked through the ward, I could only assume ‘mine’ had been taken down due to the risk of transmission of Covid-19, the room being located off a main road meant it was rather noisy when the window was open.
As anyone who has experienced an inpatient admission will know there is often a flurry of people coming and going in those first few hours. It didn’t take long for the on-call psychiatrist to arrive to take a history and ask me all manner of questions. I absolutely hate this because everything is in my notes (I’ve read them and had them amended for inaccuracies) so why ask me the same questions, I feel like I am being tested for an exam in school. I reeled off the answers perfectly because everything was etched into my brain permanently, accurate dates and names, I barely ever forget anything relating to my mental health and experiences. On more than one occasion psychiatrists have commented at how good my memory and recall were.
I refused the ECG, since I’d only had one the day before when they had commenced me on Aripiprazole, so I asked they get the results from the shared system. I did agree to the blood test. I was tired; I lay on the bed unable to sleep and it wasn’t long until my named nurse Lee arrived to talk me through the sectioning process. Having not been sectioned before I only knew a little about the process such as how they could keep me for up to 28 days but how they could also discharge me at any point before that. I was also aware I could request to go to tribunal, and I asked for this process to start right away. There was no way I was staying a week let alone 28 days.
I was given medication to help me sleep around 2.30am. I slept for a short while, but I was awake again by 5am. I got up, took a shower, and got dressed then just lay on the bed. At 10am a nurse came in to do my Covid-19 test, this was the second time in a week I’d experienced this, the first was on a medical ward a week earlier. She said she had hoped the results would be back quite quickly and then I could leave my room and partake in ward activities. Whoopee, the excitement of that pulsed through my veins.
I didn’t mind staying in my room, the last thing I needed was the noise of other patients on a ward, I preferred the silence. I didn’t get offered breakfast; I could have asked but I didn’t want to disturb the sleeping nursing assistant in the chair outside my room. Lunch arrived, but my appetite had been non-existent for some time. Dinner was less appealing. I didn’t get a warm drink or even water until 8pm because every time I popped my head out the door to ask the staff member who was supposedly sitting in the chair they were not there, and it soon became apparent as to why…
At some point during the day another patient was admitted to room 15 and like me should have been isolating until they had a negative Covid-19 test. They clearly were not and spent most of the day walking back and forth to go outside as they smoked. The staff member who was supposed to be sitting in the chair was running around after them disinfecting anything they touched. I was not amused, even more so when said patient asked me why I didn’t leave my room as she walked past my open door.
Like every night for weeks, I barely slept in the hospital despite the standard sleeping pills prescribed. By the time Sunday came around I was desperate to get home and made it clear I wanted off my section during the ward round on the Monday. I got a feeling that the staff also thought I should be at home. During my days on the ward I stayed in my room pretending to read, but my lack of focus meant I couldn’t really absorb what I was reading, but it was my way of saying, look I’m ok, I’m reading, I’m engaging and I’m not kicking off. Barely any staff came to talk to me about how I was feeling or what risks I posed if I went home, I saw my named nurse Lee just twice, both times he was covering the night shift. During the day I was simply left alone.
By Sunday evening with no sign of the Covid-19 test results I was beginning to go stir crazy being cooped up in my room often pacing up and down or peering through the graffitied window frame. I planned to rebel if by 10am on Monday morning my results were not back. I was going to leave my room and do what the woman in room 15 had done, sod isolating anymore enough was enough. I later learned that the staff had been chasing up the Covid-19 result most of Sunday from the lab.
On Sunday night I got a little more sleep, thanks to their standard dose of sleeping pills and the 10mg of diazepam I found hidden in my purse, my bag was not searched when I arrived and I had completely forgotten it was in there. At 9am on Monday morning I was told I was free to leave my room, the Covid-19 result had come back negative and the staff thanked me for my patience. I headed to the garden for some fresh air. My ward round was booked for 2pm. Three patients approached me asking was I staff; I must have looked well! A student nurse spent some time talking to me, he was a third year and asked could he kindly come into my ward round. I agreed he could, after all 10 years earlier I too was a student mental health nurse, although a breakdown and my first overdose put an end to my studies rather quickly but it was my choice to withdraw from university.
I did some preparation before the ward round by googling the psychiatrist I was about to see; it seems he had a special interest in the care delivery of those with Borderline Personality Disorder i.e. EUPD. Great another expert! My ward round time arrived and lasted all of 10 minutes, but it was agreed I could go home if I handed over the stash of medication I had to the homebased treatment team who would continue with visits. There was no real talk of the section, so I assume I was just taken off it. Ward round over, I grabbed my things and left telling the staff that I would come back in the evening to collect my medication, I ordered a taxi to take me the 11 miles home. A few hours later I drove back to the hospital to collect my now dispensed prescription.
The next day staff from the homebased treatment team visited me and I grudgingly handed over my excess medication but that didn’t stop me ordering more almost immediately. My section and admission to hospital had solved nothing, just as I had expected. If I’d remained there nothing would have changed for me, I was simply seen as someone having an EUPD crisis, albeit a sodding long one of now more than 8 weeks.
What did occur over the coming days though was my urge to spend money and gamble, turns out the aripiprazole was causing these side effects, I was literally spending £40 a time on scratch cards and lottery tickets for several days before finally realising aripiprazole was the cause (it is associated with the need to gamble, so should be avoided in those with a previous gambling problem which I had experienced many years ago). I also spent a significant amount of money on God knows what, the little nest egg that had built up during lockdown had suddenly disappeared. The nest egg was in fact the money to cover the cost of my funeral. I spoke with the psychiatrist on the team and agreed to switch to quetiapine, a drug I had previously been on before, one I was not keen on but the one with the least chance of weight gain which was my biggest fear having lost 50kg. I needed to avoid over sedation being a driver and a carer so explicitly asked it was titrated up slowly.
What triggered my latest relapse? Normally I find in Spring my mood soars upwards, especially when the clocks go forward. I had been experiencing a period of depression throughout December, January, and February all normal for me. It was only when the Coronavirus situation came to a head that I started to experience severe anxiety about becoming infected and passing it on to my dad. Knowing I was becoming agitated as well as experiencing disturbed sleep prompted me to seek help from a GP and I asked outright for something to be prescribed for my anxiety during the telephone appointment, but the GP in question refused, stating he couldn’t prescribe things like benzodiazepines. I knew this was him fobbing me off and I felt like someone seeking a drug fix because I had asked for what I felt was needed. In 10 years, I’d had just three prescriptions for diazepam and those were for dental procedures. Now if I’d spoken to my own GP who knew my history, I suspect the situation would have been somewhat different.
It was almost two weeks until I contacted my GP surgery again, this time my anxiety was even more crippling, plus the OCD and agitation were at its highest and I was suicidal. I’d also taken to my typical behaviours during a crisis of driving in the middle of the night or going for walks to a secluded motorway bridge, where I would often listen to music, sing, and dance but I still desperately want to throw myself off and end my life. I always chose a secluded area where there was limited lighting and the least chance of anyone seeing me.
It was all so confusing, I was both hypomanic and depressed, a clear sign of a mixed episode as in Bipolar Disorder, I’d worked out three years earlier this was what I was frequently experiencing during the agitated depression which occurred every year between August and October. Only in 2020, it appeared at the beginning of March weeks before the UK lockdown. I knew I was searing into the depth of another mixed episode and I couldn’t stop it. Instead of feeling on top of the world like I normally was this time of year, the Covid-19 situation had sent things in the opposite direction.
This time the GP I spoke to prescribed me diazepam 5mg three times a day and made an urgent referral to the mental health assessment team. That telephone assessment took place two days later when I spoke to a psychiatrist, I had last seen in 2018. She prescribed me Buspirone for my anxiety and advised it could take a few weeks to notice a difference, I felt fobbed off and I later learnt the assessment was actually a Covid-19 assessment team that had been set up and was in no way helpful to those who were relapsing from existing mental health conditions.
During those weeks, and with the diazepam ceased after two weeks, my mood and suicidal thoughts became worse, I was constantly cleaning my home, I would start to clean and when finished repeat the entire process again. It was so distressing and something I just could not control. Everything had to be in a certain place and a certain way. My OCD had been a part of my life since I was 10 years old, but in a crisis, it became much worse and much more disturbing.
On the 2nd June I took another overdose this time with alcohol and I don’t normally drink. I survived again. That was 4 suicide attempts in a month. The homebased treatment team kept me on, and visits continued. Eventually it was time to be discharged and that happened on the 14th June, despite me still being unstable and experiencing suicidal thoughts. I was simply left to my own devices and there has been no referral to anywhere else such as the CMHT. The discharge letter refers again to EUPD as a diagnosis but how I disagree with this, but it fails to mention the agitated depression, the reaction to aripiprazole, the hospital admission, the frequent overdoses, sleep disturbances and OCD but does remark on how clean and tidy my home was during visits. It is almost like the mental health team want to ignore what is happening.
Every crisis over the last several years has been more challenging and has lasted longer. This crisis is beginning to fizzle out and gradually my sleep is improving, the quetiapine has slowed me down and reduced the agitation and I am not obsessively cleaning anymore but I am finding myself decluttering my flat. However, I am not quite ready to throw away the contents of the box I create for dad should I succeed at killing myself, it tells him who he needs to contact and what he needs to do should I die. When I start to shred the contents, it is a sign I am coming out of the crisis, but I am not able to take that step just yet.
My care is now back in the hands of my GP who is still not seeing patients face to face, I am back on the shared care protocol path so it’s up to my GP to now prescribe my meds, but they won’t increase the quetiapine, so if I feel it needs increasing I have to be referred back to the assessment service to speak to a psychiatrist. Currently I am still on a very low dose of 125mg and my past experience of this drug tells me whilst it’s helping me a little now, it won’t be long until it stops working, just as it did last year.
I am convinced I will not make it to the end of 2020 and that brings a sigh of relief. I’m 43 next month, I am weary of fighting this mental health illness, I am sick of going through the same crisis repeatedly but more so, I am tired of not getting sufficient support from mental health services. No, I don’t feel abandoned, I feel let down. Don’t get me wrong I am grateful the homebased treatment team have supported me for almost six weeks on and off (this is an improvement on previous care from them) but nothing has changed other than I’ve ended back up on a medication that previously didn’t work. All the talking with staff only brings to the forefront of my mind how difficult and distressing each crisis is and how I just do not want to be like this anymore. There has been no help with my housing issues which is continually documented in my mental health records as being a major contributing factor and trigger to my relapses. And I have done everything in my power to get moved.
The biggest thing though is I’m done arguing the toss with anyone anymore especially when it comes to the whole diagnosis nonsense, I personally avoided the topic this time around, but staff brought it up. I realised last year trying to get my opinion across was pointless because once you have that EUPD label, it seems to just be stuck permanently and professionals are blinkered to what is really happening.
Around this time of year, I might manage to get several weeks of stability before the whole saga starts again. One thing is for sure, I have truly had enough of this living this life. I am terrified of the cycle occurring.
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