Locked Out in Lock Down

Trigger Warning: Suicide. Only read if you feel able to.

We were all hit square in the face in 2020 by the pandemic and the lock down, and it affected every aspect of life for everyone. But as most people are aware – the impact of the pandemic was unequal across society – those from diverse cultures, lower economic background or those with pre-existing conditions were generally more affected in one way or another. Social care was hit massively during the pandemic. As someone who was relying on social care to make my day-to-day life manageable, I felt this impact hugely.

Its taken me a few years to feel that I can write honestly about this subject. Bits and bobs may have been leaked out over time, and those that know me well personally will know what my life was like during the pandemic. But a combination of hopelessness, knowledge that things couldn’t change, gaslighting and also just the fact that people straight up didn’t believe that such a situation could occur right under their noses, meant that I kept a lot of the facts to myself.

I have never experienced lock down.

But thats impossible! I hear you say – the whole country was subject to it. And yes, it wasn’t like I wasn’t around during lockdown. But it was that I was more locked out than locked down that was the issue. Still now, in 2024 – I find myself struggling to empathise with the rest of society – their experiences of days and days on end at home, looking forward to their one hour outside to exercise, making TikToks, sour dough, learning a new instrument, being bored seeing the same four walls – all the good and bad aspects of the lock downs, I didn’t really experience that.

Let me give you some back story and context.

Complex mental health problems cause me to have a lot of issues accessing buildings and living independently – over the years I’ve lived in a lot of mental health units, care homes and crises houses for extended periods of time. I have also been homeless for months at a time, or sofa surfing amongst friends. The beginning of 2020 saw me living in the Crisis House for 6 weeks (which I felt was long at the time – little did I know that 2 years later I’d be living there for 6 months but thats a bit of a spoiler). I had spent the last couple of years in hospital/homeless/in care homes and mental health units. I’d had some really difficult experiences and all I wanted was to be able to live safely in my own home. It seemed like a solution had been found. I was given 112 hours a week of social care funding for personal assistants (PAs) to help me live in my own home (I can’t set foot inside the door without someone else there so these 112 hours literally translate as 112 hours in my home a week). Fantastic! Except, for those of you that are quick and already done the maths – you’ll realise there are 168 hours in a week. I was missing 56 hours. This wasn’t ideal – but coming from the situation I’d been in for a number of years, and in January 2020, this felt doable. I work, I do things most evenings, I have a social life, it would be really complicated to work this out 4-6 weeks in advance for rotas. But it would be doable.

Another important fact in this story is because this funding was direct payments, I was the employer of the PAs, responsible for recruitment, management, training, rotas, timesheets, submitting these to payroll etc. The only thing I got help with was an agency who managed my pay roll. This is a lot to deal with for anyone. Especially someone with complex mental health problems, a job, and limited access to their home.

February 2nd 2020 I finally moved home with a small team of PAs in place to help me. It was complicated, I wasn’t used to living in a house or running a home, everyone was new, but it was exciting and I loved inviting friends round and living in the area I wanted to live in and having all my belongings in the same place for the first time in 4 years. Managing my life and the rotas was stressful but we were getting by. Generally a majority of the hours were used up at night to allow me to sleep in my house, so I didn’t get many waking hours at home.

And then 4 weeks in, it became apparent that this weird virus was causing major problems in the world. I started to hear word that a lock down might happen, and people would have to stay indoors. I a) didn’t think this was actually likely and b) knew I didn’t have the means to do this. The week before lockdown began, we were told to work from home. My PAs stopped coming to work. I panicked, but luckily my very very good friends Rosie and Andy said I could stay with them whilst this (what we thought at the time) temporary virus thing blew over. I’ll be forever indebted to them for doing this for me.

I work in the NHS in mental health care, so although I’m far from the frontline there was plenty to be doing at work – definitely not the stuff I usually did but we were very busy, and trying to do this at a time when none of us had worked out Zoom.

I rang my care co-ordinator on the Thursday of that week. “The country might go into lock-down – what do I do because the PAs won’t work and I can’t go home?”. I didn’t get on with this care co-ordinator – but more on that later. “You’re making mountains out of molehills and catastrophising”. She put the phone down and refused to help me work out a plan. The following Monday Boris told us we must stay at home.

I was still at Rosie and Andy’s, but I couldn’t stay forever. I also had no clue how I was going to work as I couldn’t work from home as I didn’t have enough PA hours to be at home during the day even if they did agree to come back to work.

After a really difficult meeting with the PAs, where one of them domineered over the rest and pushed them into not working. One PA contacted me privately and said she was happy to work her few nights a week, this was really complicated contamination-wise but I started to spend some nights at home and the rest at Rosie and Andy’s. In the meantime, I found a solution for work – I could work in a different office that was more accessible for me, with a colleague from another team. We ended up sharing an office for most of 2020. Phil, you don’t know how grateful I was for this companionship, normality and workspace.

Eventually the PAs were told they did have to work and someone somewhere had created some rough guidance around personal assistants and home-based support workers. However, this now meant I still had 56 hours a week not at home. Which was illegal.

I started working 5 days a week even though I’m only contracted for 3. It was the only legal place I could be and there were plenty of things to be doing and it felt fine to be volunteering my time.

So my weeks set up a pattern. I would leave my house when the PA finished the night shift at 8am, I would remain out of the house until 6pm when the next PA came on. Some days I would go to work, some days I would just be floating around a deserted Sheffield. I came back in, had tea, got things ready for the next day out of the house, went to sleep, woke up at 6am, got ready, had breakfast and went out at 8am. Day after day after day.

I did this almost every day from March 2020 to 1st December 2021, I was out of the house from 8am-6pm (slightly less at weekends), with no-where else to go.

Simple things became a huge problem. Being out was illegal at the time so I was breaking the law on a daily basis. It was really hard to find toilets I could use. Eventually supermarkets did open their toilets but I would have to queue outside with everyone else doing their shopping just to use the loo (I live in an area with limited places to go outdoors for that sort of business). Everything I thought I might need for the day I either had to take with me, or leave in a storage box in my back yard. Sometimes it was raining and I was just out in the cold and wet all day. Sometimes I got abuse from people when I was sitting in town, or trying to find somewhere slightly sheltered. I got told I was selfish for not being at home. I took to cycling a lot – because if I was exercising people would think I was doing my hour of exercise and have less of a problem. 4 years later I’m struggling with a significant exercise addiction as part of my eating disorder. Sometimes the PAs couldn’t come to work or didn’t turn up. I slept in a bush in the park on these occasions, despite still having active issues with my stalker who lived in the area. The night they had the party at Downing street I was sleeping in the park, after my day of working for the NHS, I dragged myself out of my hedge (looking exactly like I had been dragged out of a hedge backwards because that was what happened!) and traipsed back to work the next day.

My care co-ordinator came into her own in the levels of abuse and gas-lighting she sent my way. She no longer works for the Trust. But I found myself with no mental health support as any contact I did have with her was abusive and often involved shouting at me down the phone for up to an hour.

I had some issues with PAs too, one was financially abusing me and a lot of others came and went very fast. Their job was difficult and unstable so I don’t blame them. But the ones that stuck at it – well I’m indebted to them too. They worked so hard to support me in absolutely abysmal conditions for me and for them, I’m so grateful and many are still friends to this day. They fought really hard to try get more hours for me, as did friends and family, but we were met with no change.

During this time I understandably struggled with my mental health. And had 2 suicide attempts in 2020 and another in 2021. The two in 2020 were only a month apart and were met with more abuse from my care co. As soon as I was medically stable I was discharged back into my outside life, despite having been in resus less than 24 hours before. I’m actually proud of myself for not falling back into old habits of self-harm that could have given me the safe place to be of hospitals. But barring a few issues here and there, my self-harm was actually very low during this time.

South Yorkshire Police and the British Transport Police at Sheffield Station were also life-savers during this time. It wasn’t long before they were aware of my situation and didn’t penalise me for being out and about when I had no choice. If they came across me distressed (because also I had nowhere private to take my emotions during this time), they would help calm me down, bring me home and give me 20-30 minutes in my house, making myself feel safe and maybe getting me a cup of tea, and helping me work out how I was going to fill the hours before I was next able to return home. The staff and police at the station too understood my situation and would often invite me in for a cup of tea when it was cold and let me use the toilets at the station or hang out in the shelter of the foyer when it was raining.

I had a slight improvement of the situation around December 2020 for a few months. My old care co left (thank goodness) and a lovely new one came in her place (it took me a long time to trust her because of previous experiences but she is still my care co now and is outstanding), and around the same time my situation came to the attention of someone higher up in the community mental health team. For a while I had a bit more flexibility over how I used my funding and had a bit more time at home. But this didn’t last very long and I ended up back in the same out for 10 hours a day every day situation.

By summer 2021 I was done, I felt like there was nothing that was ever going to change. Life was not sustainable. I was exhausted and couldn’t continue like this. My social care situation wasn’t changing. I gave up. After a seriously suicide attempt that involved multiple methods, all 3 emergency services and resulted in me being sectioned in another city briefly, I had a week at Crisis House. Nothing changed. I went back into the same situation. But by now my PAs were flagging too, their mental health was taking a beating and a lot would go off sick, leaving others to cover shifts, meaning they would go off sick and the cycle continued.

Having to leave me every morning, knowing I had no place to go, sometimes very distressed or unwell, must have been awful for such caring people. They gave the mental health services an ultimatum. Give us the resources to help Ellie properly by the 30th of November or we will walk on 1st December. I was fully behind their decision to do this. I hated seeing others suffering because of me.

On the 1st December 2021. I got up, opened my advent calendar (a seeds one – thanks Mum!) and went to work. Knowing that I wasn’t going to return home. No solution had been given, the PA rota stopped there. I went about my work day as if nothing was awry. But as the day wore on I realised I’d buried my head in the sand a bit too much and had no clue what I was going to do after work. My phone rang at around 2pm. I could stay at Sheffield Crisis House until something else was put in place. The relief was huge. For the first month or so, being able to be inside during the day was a total novelty. Unfortunately, that was the start of a whole new set of battles – the saga does continue.

Overall, I spent 20 months, during the most COVIDy bits of COVID, locked out from 8am-6pm every day. I am proud of myself for surviving, I am proud of myself for actually excelling at my work during this time, for having a major part in the building of a roller skating community during this time. But the toll it has taken is massive. Only last week I had a day where I had no care in place and had to be out all day – I couldn’t cope, everything comes flooding back. In adverse situations sometimes we just have to get through it – and the trauma comes later. The impact of having nowhere to go during the pandemic for such a long time has been devastating personally – I already had complex trauma and this just added even more to it. My ability to trust people reduced massively, my ability to ask for help also took a huge hit. Even now, when people try to help me I don’t understand why they are doing it – because I received so much abuse about it around this time. A formal complaint made about the care situation was not upheld and I still don’t know why, I think because I held back a lot about what was actually going on. I was ashamed.

It was hard to know what to say to those around me, it was a lot of pressure on my friends – if they made a plan with me and had to cancel, it would leave me with nowhere to go. I didn’t want to speak up too much about it because of where I worked (the same organisation I received care from), I was worried I’d get sacked for telling people the reality of my life. Some people flat out just didn’t want to believe that the conditions I told them I was living in was true.

I still struggle, when people talk about stuff from lockdown and I just can’t relate. The whole experience was incredibly isolating. But also I am so grateful for those that played a part in me getting through that time – and you know who you are.

Feel the fear…and do it anyway?

All my life I’ve been running… running away from what? My past? My trauma? I’m not even always so sure. For the last 20 years at least, I’ve been running blindly, never looking back.

In whatever way you could run from life I’ve done it. I’ve moved abroad multiple times. I’ve travelled. I’ve kept myself insanely busy (during my final year of uni I did a full-time degree with placements, supply taught, volunteered in a school, ran a rainbow, brownie, guide and senior section group, had a weekend job at a milkshake shop, was president of the uni netball team, played in a local netball team, lead a Girlguiding UK development project to Chile and organised the project and the team members throughout the year of preparation, I fundraised for said trip, I never spent a holiday or week off in the UK, I went out up to 4 nights a week…and that was potentially one of the calmer times in my life). I’ve had more suicide attempts than I can count, and probably at this point a thousand or more episodes of self harm. I’ve drank into oblivion. The one method of running away I haven’t really used is hard drugs – once was enough for me – it didn’t end well. I have physically ran away, and still do – whether consciously or not. I have disappeared. I have starved myself. I have got myself sectioned and locked up or sent away so I was still effectively running from life. I’ve filled my days with exercise – adrenaline-ridden sports. I dissociate – much more than most people appreciate – I don’t feel a lot of feelings because dissociation protects me. I’ve never, ever in my adult life stopped running.

But for the first time I’ve started to look over my shoulder at what I’m running away from.

And I feel fear.

And its fucking awful.

I’m 6/7 months into my first proper attempt at therapy. I’ve had some partial therapy situations before but either its been the wrong therapy, the wrong time, I’ve not really engaged or it was just too short and shallow. I’ve never really had the chance to look back.

For the first time in probably at least 8 years my life is fairly stable (in my terms anyway – I have a stable roof over my head, a job, my body is not about to pack in physically and no active trauma is happening to me). But yet every single day is still riddled with fear. My body courses with adrenaline that I can’t keep in check. Last week things really came to a head and I ended up getting really distressed because of this fear. I couldn’t function, caused a scene at work, and the skatepark and various other places. Things weren’t OK. I cope pretty well when things are shitty around me – Its my normal. I found myself yearning after 2020 when I had no safe place to stay, was exhausted, life was terrible and unsafe and i wouldn’t wish it on my worst enemy, but some how made it through – why couldn’t I be the person I was then? Why can’t I make it through my safe cushy day today – where I have a roof over my head, no immediate danger?

So I was struggling to function last week when I rang up the duty team to speak to someone. I was so scared something horrific was going to happen. I’ve lived my life with bad things happening to me – why would now be suddenly different? I told the person on the end of the phone (“oh I haven’t had chance to read your notes but I know your care co-ordinator is x”) – “I’m feeling fear, I’m feeling so scared. I’m terrified”

So you can imagine it went down really well when they suggested “have you tried mindful colouring?”

In my mind I’m literally doing the equivalent of running from a bear – and you suggest stopping and doing some colouring? – no wonder crisis care is in a mess.

Cause of distress = fear

Solution – colouring in

It doesn’t make sense? I rang on 2 separate days – had varied experiences but none of them made me feel much better – phone calls of over 30 minutes just served me feeling less understood and more anxious…and questioning where I had put my colouring pens…

After several days of feeling like everything bad that had ever happened in the world was probably about to happen to me (and my mood and ability of socialise and function reflecting this was not great). I rang the charity who provide me with therapy. I didn’t speak to my therapist – she only works 2 days a week, but spoke to her supervisor – the clinical director. I only spoke to her for about 12 minutes. But she didn’t suggest colouring in. She explained to me what was happening.

She was describing it to me as a smoke alarm going off – but its just someone burning the toast. My smoke alarm is in excellent working order – but its going off all the time – because in the past its had to. I have been in so many situations in my life where fear was the appropriate response (whether or not I actually felt that at the time is another issue) that my smoke alarm’s default setting is kind of set to “going off”. Imagine you hear a car alarm on the street – and you get filled with fear-based adrenaline. It must be your car that is being stolen! You check out of your window and your car is there, safe and sound and the alarm is coming from further down the street. In theory you can rest, safe in the knowledge its not your car that is sounding the alarm. But you don’t rest. The constant siren puts you on edge, you can’t concentrate, you can’t watch TV, you can’t get anything done. In the end you get up and leave the house – do something to keep you occupied and away from the noise.

That is what my life is like, living with Complex PTSD every single day. My smoke alarm. Or my car alarm, is going off all the time.

But this was so much more useful information than “why not try some colouring”. No it didn’t solve the problem or provide me with a solution to make it go away. But it explained to me why I was feeling the way I did. And more to the point – instead of suggesting distracting and not having the feelings at all like I’ve always been told to do – the suggestion was feel it.

Now the idea of feeling fear, and sitting with it, invokes even more fear within me. This isn’t going to be an easy ride. And I’m angry that I have to do it because of things other people have done to invoke fear in me in the past.

My therapist yesterday explained that all of this fear feeling is a good thing. I’m not using dissociation to blank everything out. It means that doing therapy is useful for me. But it doesn’t mean its easy. She likened it to climbing a mountain – its never straight up and there are ups and downs and obstacles. At the moment I’ve kind of gone down into a bog – its in a bit of a dip and I can’t really see out of where I am now, and I’m making massive efforts to take steps forwards but I’m not moving anywhere. But I’m still taking those steps. I could stop and go back – but I’d still be on a mountain. Or I can carry on, eventually I’ll be out of a bog and have a bit of a better view of the path just travelled and the road ahead. But for now I’m just stuck trudging through the bog. With a bear chasing me.

Nice.

Needs Must – why paying attention to the hierarchy of needs is important in helping mental health service users to achieve their full potential

Most people are at least vaguely familiar with this diagram – Maslow’s Hierarchy of Needs. The theory being that we need the lower layers to be stable and consistent to build on the ones above.

My basic needs being met is something I’ve battled with consistently for at least the last half decade – in reality I’ve probably struggled to have my needs met for most of my life but because I had my basic needs covered – the rest of the pyramid appeared to be relatively stable, from the outside at least.

For the past couple of years I’ve struggled getting the lower 4 sections of my needs met. I can function to some extent if my basic needs are met – even if some of the higher ones, particularly psychological needs, are not met. However when those basic needs that everyone take for granted start to slide, things unravel pretty fast.

I’m at another point in my life where yet again my base layer of needs – Physiological needs – are not being met. And not surprisingly everything has fallen down around me. I’ve worked hard over the years to build the upper layers for myself – building friendships, working, doing things that bring me joy and boost my esteem – but the foundation layers have always been wobbly, so it doesn’t take much to bring them tumbling down.

Because I’m eloquent, generally fairly well dressed, have a job (even if I’m not working at the moment) and seem to have insight into my mental health problems, I often find that when people are taking my psychiatric history they skip out the more social aspects such as housing, safety and financial situation – all of which are major problems for me – but are presumed to be sorted because of the aforementioned eloquence. It’s the same equivalent as getting a really depressed person in and not asking them about elevated mood because they look so low right now. It’s really important to cover every area because you don’t know what might be lurking in people’s corners.

Currently, as a direct result of my mental health problems, I am not able to meet my basic physiological needs consistently – food (I can’t always afford it and I can’t heat things up myself so left without help I can only have cold food), shelter (I cannot access my house – even step beyond the threshold without support – renting a house is not the same as being able to access a house – and because my situation is so dire currently I don’t have any access to my house during the day times and don’t have access to my house 7 nights a week), warmth (comes along with the previous two – I’m stuck outside left to my own devices), rest (impossible when you don’t have somewhere to shelter and put your head down or even just chill out), water (I don’t have access to a toilet without walking at least 15 minutes (if places are open) or somewhere to wash except my cold outdoor tap).

Because my basic needs are not met, the next layer of needs – safety needs are difficult to meet. If I am unable to access my house, especially at night I am putting myself and my belongings at risk by sleeping rough, in my garden, being out and about at inappropriate times of night or being out and about in the day when its wet, or I am simply tired and don’t want to be out but have to be anyway. Add that to the fact that I’m in a significant mental health crisis right now – my security and safety are once again very compromised. Because of my PTSD I would not be able to protect myself from an intruder or attack as I go mute and freeze and/or dissociate very easily.

The next layer of needs are a complex one – the psychological needs. Some of these I am actually really good at doing myself (if the needs underneath are met adequately to support this). Belongingness and love needs – I make and sustain friendships very easily – however, at times when my other needs are not met – my friends are often relied upon by services to be my mental health carers and this is very damaging. However, because of untreated trauma, I have never (at the ripe age of 34) been in a romantic relationship. And I don’t think I ever will be able to unless I’m given the opportunity to address my trauma.

The next level, esteem needs is another complicated one. I have worked hard over the years to do things that increase my self-esteem as its naturally very low and because of being in repeated traumatic situations like this one it gets knocked down very easily. Prestige and a feeling of accomplishment is a very personal thing – sometimes I feel proud because I’ve slept rough and actually been independent for the night instead of having to rely on someone else – even if the experience was horrible. Other people might get a lot of feelings pf prestige over work promotions or buying a really fancy car, having children or owning a home. I get a lot of feelings of accomplishment through my skating and also through my work. But at the moment both of these thing are difficult to do because, quite frankly its impossible to turn up to the office and not be a total wreck when you’ve got the anxiety of a night with no shelter ahead of you. So once again this higher tier can’t be achieved unless the base layers underneath are adequate.

The top tier – self-actualisation, is something I definitely have not managed to achieve by any means in the lat decade. Achieving one’s full potential. I’m not denying that I haven’t made progress in some areas – less self-harm, more work and positive activities. But I’m hugely held back on this one because once again, nothing in the upper tiers is achievable if you don’t have the lower tiers nice and stable. I will never be able to move forward professionally – because I’m unreliable at work, because my basic and psychological needs aren’t met. I do have the potential, I know I do – I’m hard-working, fairly intelligent and good at making connections – but I will never be able to achieve my potential without the bottom 4 layers being dealt with.

I get a lot of people saying to me “oh but you have a job, you have so many friends, you have super fun hobbies – everything must be fine!” – but these mean very little, and in themselves are not achievable or sustainable if you don’t have a roof over your head and warm food in your belly. Everyone sympathises with the whole “moving house or separating is one of the most stressful things a human can do” thing – because in that process all our basic and psychological needs are jeopardised – even if that’s just for one day. Imagine if every day was as stressful as moving day, or the day you finally got a divorce. Thats what it is like for many of us with complex mental health problems who struggle to meet our basic needs every day. Whether that’s someone with memory issues who forgets to feed themselves or leaves the back door open by mistake. The person with depression who pushes away all their friends and family. The person with bi-polar who burns out because they haven’t slept for days on end. We’re all struggling to get those basic things seen to – so don’t be surprised when we can’t hold down a job, struggle to make friends or join a knitting group.

Work from the bottom upwards, slowly and steadily and you can help someone build a solid foundation upon which they can really achieve their full potential.

A Different Kind Of Crisis Care

April is a bit of a blur for me. I have not been well at all (and had been ignoring warning signs beforehand) but it finally got to the point where even I had to admit I was unwell. It was a bit of a perfect storm in terms of precipitating factors (which I don’t want to go into here but came from several areas of life and were largely out of my control), to be honest some of those things on their own would be enough to knock any bird off it’s perch – but a lot came at once and because I had been ignoring other warning signs beforehand (which was under my control but I’m having a hard time learning to cut myself slack and not try and paint a mask on) and it all kind of came to a head.

I carried on attempting to persevere – turning up to work, pretending things were OK etc. But by that point my body and my mind had already gone through the mill a bit and it wasn’t until I got to the point I was unable to remember being in various meetings at work, unable to travel from A to B independently, and even not be able to do the washing up, tolerate having my beloved ratty boys around me or remember to eat or drink, That I finally started listening to those around me and admitted I might need to take it easy for a while and look after my mental wellbeing. I am someone who lives with severe mental health problems every day but goes to great lengths to live a life of someone who doesn’t…and inevitably I can’t keep it up forever.

It’s been a long, hard slog – and one that felt like it was only going from bad to worse for a good few weeks. But I’m finally starting to piece myself back together – but tentatively. This has been a period of significant crisis – of which I probably haven’t had now for about 6 months since my life became a lot more stable and manageable. However, for the first time, we navigated through this crisis using the resources that were already available to me – but just more flexibly. I did not need intervention from the crisis team or home treatment, nor did I need to spend the night in the decisions unit, crisis house or a ward – and this is new to me but so much better. Yes, I did need medical attention on several occasions and the emergency services were also involved several times but these were all well dealt with and swiftly able to be handed over back to my normal care.

As well as being mentally unwell I have also struggled with the after effects of several head injuries which has resulted in an elongated period of concussion making me physically less able, struggling with memory, processing and managing tasks etc. This has been something I’ve found particularly difficult as I couldn’t do the things that help myself. Hats off to those that live and manage life with a more serious long-term brain injury. It really is hard.

So what helped manage this crisis period? I have several things at my disposal now that I have not always had in the past – or have had these things limited and therefore my ability to utilise them wasn’t great.

A safe place: This is the first time in a number of years that I’ve gone into a crisis and had a safe place in which to attempt to heal myself. A stable, accessible and safe home has not been a given for me until very recently. In the past year I’ve had the physical safe place but not always the means to access it. This time, I was able to use my support hours flexibly so my awesome team of Personal Assistants (PAs) could help me stay at home as much as I needed. This is so basic and something a lot of other people don’t even think about but for me has been something I’ve never had. It’s the absolute baseline of maslow’s hierarchy of needs and without this there is little point trying anything else. It makes me cringe when I’ve been in crisis previously and been sent back out into the cold with no safe place to be – told to “use my coping skills” and maybe offered a follow up phone call – how could anyone ever think I could successfully pull through a crisis without that? I spent years beating myself up because I couldn’t – but now I’m starting to realise that wasn’t OK and no one should have expected I could make it safely through crisis without a safe home.

Personal Assistants: OK so I know this definitely is something I am fortunate to have – but I only have them because basics like accessing home, cooking warm food and feeling safe are not possible for me without assistance. My PAs have been in place in some format for over a year now but this is the first time they’ve been allowed to help me as they see fit – previously they were under very tight restrictions as to how many hours they could work and were not guided by the mental health team or each other. Now they are well supported with external supervision, by each other and by my care co-ordinator if necessary – they are able to appropriately help me have access to the tools and resources so I can get myself back on track. In this time of difficulty they took more charge than they usually would on my daily life – making decisions about whether or not I had day shifts, cooking for me and making sure the ratty boys were looked after – all things that functioning Ellie can usually manage. This allowed me to free up spoons to help me just get through the day safely.

Mental Health team supporting flexibly: Particularly in the last year I have been actively told to not reach out for help from services (and indeed I stopped doing that even if it put my life at risk) and even been bullied and blamed for not managing in adverse situations. However, 6 months ago things changed and I got a new care co-ordinator and additional support from a senior member of staff. This also coincided with input from an OT from a charitable organisation to help with my eating disorder. With these people in place I have rarely had to ask for help – because it’s there if I need it. They all responded in a compassionate, non-judgemental and non-punitive way. I wasn’t made to feel like I was a crap human being, or guilty for how I was struggling. They discussed risk and self harm openly with me – wanted to find out more about how this was for me, and most importantly did not make me feel like I’d failed when risk did occur. I had phonecalls or appointments a couple of times a week that I didn’t have to beg for or explain myself to someone who had never met me before. Just a gentle catch up and helping me break my day down into small, manageable chunks. I was assured they were there, and to please ask for help if I need it. The OT even was able to come round and help me process my PA’s timesheets which were due and very complicated to do and something I just couldn’t fathom managing (which further freaked me out because I was worried my PAs wouldn’t get paid for their hard work). With this gentle, flexible, empowering support I did not need the input of any additional crisis services, and it has tailed off gently as I now don’t need it as much – this is different from the very sudden ending when working with Home Treatment for example.

Supportive workplace: I am incredibly fortunate that my management are more on the ball about my mental state than I am – encouraging me to take things easy and supporting time off before I would let myself do those things! They have been unconditionally supportive, kept in touch and allowed me to take control of phasing back into work in the best way for me. In addition, I did something I have never previously done and put an out of office reply on – specifically stating that I was taking time out to look after my mental health. I was incredibly anxious about doing this but the response has been people knowing that I’m not working at 100% ability, and other colleagues being incredibly supportive and welcoming on my return. Knowing that my livelihood will be there for me when I’m better helps me pull through much faster I feel.

Friends and family: I struggle in asking for help from anyone full stop, not just services. So reaching out to my social networks is difficult. However I have some amazing people in my life who are sometimes quite proactive and forwards with their support. Which I’m very grateful for as I’m often unable to ask or articulate that I need help. On more than one occasion I’ve had friends turn up because they suspected I needed help and was unable to call for it. I’m so fortunate to have these people in my life – and the others that just send gentle end encouraging messages or little gifts through my letter box. It all helps and it all means so much.

Going back to basics: Especially because I had a head injury as well as my “normal” non functioning, I really needed to strip life and the tasks I had to complete right back down to basics. This involved things like batch cooking so I could have the same lunch every day – taking off the decisions and food preparation so that I could concentrate on eating it. It meant literally only thinking about hour or even minutes ahead. It meant saying to people “I’m sorry I can’t do this for you right now, I just need to take time to concentrate on my mental health”…something I find incredibly hard to do but was important that I did.

Doing what I feel my body and mind needs without judging: I often don’t do the things that I know inside I need to do – because I place a lot of judgement on myself or worry about judgement from others. But I’ve really tried to listen to my body, my mind – their most basic internal needs and go with them. Yes that means I haven’t left the house without at least 3 cuddly toys in my bag and wearing noise-cancelling headphones in about 4 weeks. But it’s what I need to make the world less overwhelming and allow the smaller parts of me to feel comforted and safe. I even turned round and apologised to my colleagues last week because I’d just had several back to back meetings and I needed to curl up under my desk with my cuddly toys and grounding playlist. They didn’t bat an eyelid because they knew that by doing that I was assuring I could make it through the work day.

I’m still a long way from “optimum Ellie”, this has been a significantly difficult period and the precipitating factors are not resolved nor have they gone away. But I’m getting there and slowly learning to make the right choices – even if I’m embarrassed about them or worried about judgement.

I had a beautiful interaction with a consultant in A&E last week who had known me when I was a “revolving door” case several years ago. She reminded me how broken and hopeless I was back then, and although she could see I was going through a difficult period, she was amazed at the way I was managing things compared to back then. It felt good to tell her I was working and rarely came to A&E anymore. She told me that she was now the mental health lead for medics in the department and that it was people like me that had inspired her to keep combatting the stigma surrounding people like me in the department. That felt good.

I’ll get there. But bear with me for a little while whilst I work on myself for a while.

Sharing the story

So the title of this post is probably a bit misleading – I’m not going to be sharing the whole of my story – for starters you would need 31 years and 51 weeks to understand it fully and I also don’t want to be that person who walks into a party and starts up a conversation going into mega detail about the pain in their leg they’ve been having for a couple of weeks. I’ve had a pain in my head for pretty much a whole lifetime but it’s not the only aspect of me – so this blog will talk about other life experiences as well as those related to my mental health. I am lucky to have had a very varied and wide range of experiences in my life – some hilarious, some traumatic, some close to home, some thousands of miles away- and they all shape who I am today. But I’m more going to be talking about the process behind sharing my story.

I’ve often been told “you should write a book” “you should write a blog” and everything in between. To put it quite bluntly I’m too busy doing life to sit down and write a book but if someone comes up with a technology where you can just scan your memories into a computer and it’ll write a book for you I’d happily comply. But a blog seems a reasonable compromise. And I’m not sure what it’s purpose is but the more I am learning to share my experiences (and it is literally my job now to do so) the more I’m realising that my story is potentially an important one to tell. I come across a lot of people who “don’t expect those sorts of things to happen to someone like you” or who say “I would never have known you go through all that – you look so normal” (if anyone would like to draw me a picture of what “normal” looks like please feel free to send me mail!) I think what they mean is that I don’t shuffle around muttering to myself, I am capable of eloquent conversation (most of the time), I have done a lot of things in my life, I am willing to engage with treatment (that has not always been the case), I do have have job, I do have hobbies and interests and I’m not locked up in a padded cell – on a good day – apart from some visible scarring, I can show no outward signs of mental illness. Yet every minute of every day I’m battling barriers that would make most people curl up in a ball and never leave their beds. “But it’s ok for you – you’re determined and motivated and strong”or “I couldn’t do what you do – I don’t know how you do it” … kind words and I understand the sentiment – but I think sometimes people think I have some superhuman powers of coping that other people don’t have. That, to be totally blunt, totally belittles the effort I have to put in to keep myself going every day. I’m not special at all and I wake up every single morning, slightly dissociated and confused and when I ground myself I want to die. Because that’s how I’ve always known waking up to feel like…wanting to die. Exhaustion at the idea that I’ve got to battle through yet another day. But the difference now compared to a few years ago is that (usually – and this does wibble slightly) within a couple of minutes I remember the novelty that I do have a life, I do have plans, I do have a job to go for, I do have friends and happiness does exist. So I haul myself out of bed and face that day because positive memories can’t be made lying in bed.

It is possible to live with severe mental illness and lead a fulfilling life – yes it might be rather more complicated, frustrating, less in your control and certainly more effort than your average person “doing life stuff”. But it is possible. I have the odd situation of being a service user (and one of those irritating ones that gets labelled as “complex case” (I’ll talk about my feelings about that in another blog) and is quite stuck in the system) and an employee in the same mental health trust. I am also someone who needs to be in a pretty significant level of 24/7 support but I can also hold down a job. My disability doesn’t define my ability and my ability doesn’t define my disability. People get very narrow minded that because I can work and travel across the world and put my pants on the right way round (though FYI last Wednesday this wasn’t the case) that therefore I must be able to cope with everything else and I spent years trying to get services to understand this. I’m all for a positive spin on things but solely concentrating on the fact that I’ve got a really good set of hobbies and friends and totally ignoring the fact that I’m incapable of entering and moving around a building independently or making a hot meal for myself or sometimes getting myself to the corner shop – isn’t going to help me move forwards in life. It has taken me a long time to accept that “both can be true” (a good old’ DBT dialectic) but I still think a lot of professionals have a long way to come to truly understand that this can be the case for a lot of people.

Hence why it’s important to talk. It took me YEARS to learn to talk. Diagnosed in 2005 with an eating disorder I took years to actually admit to anyone there was a problem (despite not doing well at my A- levels, having to take two gap years and being chucked out of uni and a job because of my illness) – I was an expert in denial and “yeah but” was my favourite response to challenges. I think in 2012 I started to realise maybe something was wrong (by this point I was in day treatment for eating disorders but couldn’t shake off the feeling of being a fraud so wouldn’t really open up to anyone) and then after a pretty disastrous 2013 I finally accepted something wasn’t right and would start to open up in private sessions with professionals. At some point at the tail end of 2014 I made a decision to start to stop hiding my mental illness (by this point I had been in day treatment for eating disorders 3 times, was in an acute psychiatric ward and had been hospitalised several times for overdoses). Prior to this I had always covered my tracks with most people except those that really needed to know. I started to let people know and far from being rejected by all and sundry I found that the response was surprisingly positive. I continued to struggle with actually opening up about what was going on for me but I did speak out arbitrarily about mental illness and didn’t hide that I suffered but it wasn’t until I was admitted to a year long specialist admission in York that I actually learnt to talk about what was happening. And that was a huge turning point. It didn’t miraculously make me recover or improve services but it did help me start to unpick and understand what on earth was going on in that grey matter of mine – and although I am still in a very complex point in my life – this ability to speak and articulate more about what is going on is going to eventually get me closer to where I need to be.

I’m also fortunate enough to have a job role where I don’t have to hide my mental illness…in fact so far from the truth because having experience of mental illness is in the job description for my role. And that’s a complicated dynamic – and one that takes practice and I’m still learning to perfect. But how honoured am I to have the opportunity to be in a position where sharing my experiences can genuinely influence others – people recovering themselves, professionals and how they practice, and maybe…just maybe…even have some influence on how services are run. Speaking out is the most important and scary step I’ve ever taken, but it’s worth it – for myself and for other people.