Living with the enemy

The logistics of getting me back to work were complicated. I had holiday I was owed, and needed to phase back to work really slowly to prevent relapse. The law requires an employer to assess your needs and make reasonable adjustments, but this is actually quite hard in the context of mental illness. Each persons experience is different, therefore, support needs very dramatically. 

I requested regular supervision, reduced hours for a couple of months whilst I got back on my feet and suggested I could use my owed holiday time within my phased hours. There was a big "NO" about all of it. They needed me to take my holiday as soon as possible or I would lose it, my boss disagreed with the diocesan policy of regular supervision as it wasn't the way he wanted to do it, and pretty much refused to do it, and they said they'd like me to be back on full hours sooner rather than later. Hindsight is such a gift. When I reflect on this time I realise that I should have told them to stuff it. Sick staff cost money, cause hassle and generally people can't be arsed to go through the rigmarole of being supportive. It's easier to try and jettison you at high speed and recruit a well person.  

I don't like being ill, and I hate feeling that I am being obstructive to business and progress. I understand that I am problematic to deal with. The flip side of that is that I have a right to work as a disabled person and be encouraged where possible to do that. Finding the balance that suits both parties in this kind of situation is tricky. I don't want to feel like I am taking advantage, and they don't want to get caught out discriminating against me. There's a lot of tip toeing. 

Then this.

prejudice

ˈprɛdʒʊdɪs/

noun

1. 1.

   preconceived opinion that is not based on reason or actual experience.

   "English prejudice against foreigners"

   synonyms:

   preconceived idea, preconception, preconceived notion;  prejudgement "male prejudices about women"

   
   
2. 
   
3. 4 months. 4 whole, long, dark and hideous months. So many things come into play when you are dealing with someone who has some kind of prejudice.
4. 
   

• I must be misunderstanding you because I got the impression you understood. I'll try harder.
• I don't want to believe that you are treating me with prejudice as what you tell me with your mouth is that you are not prejudice. I'll let it go for a little longer.
• Maybe I am wrong and that isn't what you are doing at all. Shall I tell someone and check out what is happening?
• Oh dear God you are actually prejudice. Dawning realisation of a very bad situation.
• It's clearly obvious through your actions that your are prejudice and I am having to live around this and have done for months. Shall I stay, fight, or abandon ship?
• Are you deliberately like this, or are you uneducated and afraid? Hopefully the later.
• Does that make it acceptable? 
• I accept your limitations and remove myself from harm. You get to wallow in smug satisfaction that your problem is removed and somehow, preserve your position of power and authority. I however, have no self esteem, self belief or confidence and have to leave my job. 

I cannot expect people to understand. No-one will ever experience my life or walk entirely in my shoes. It's tough.  I do realise that there are other people in the world much worse off than I am,  whether they are physically or mentally challenged, homeless, experiencing war and violence or abject loneliness. I know that I am not "owed" anything as such, and that I have a choice as to how situations pan out. I practise an attitude of gratitude on a daily basis, have made a commitment to helping others when I can, and choose compassion and understanding over fear and judgement. However, I am powerless over other people, and recognise that I have to choose my battles wisely. I must preserve myself in order to be a mother, a friend, a wife, a colleague. What I struggle with is a wilful disregard for someone else's peace of mind and the almost perverse satisfaction they get from succeeding in damaging you. I just don't understand why you would want to do that for sport. It's beyond me. 

I am a sensitive soul, and my illness exacerbates this. I feel and experience things in a deep way so it can take a while to recover from challenging situations. I have to remember though that even though I dance on a slightly different string of the bow to most folk, we are all still on the same bow, and I will be carried along with you all and normal service will be resumed presently. I have to trust that the world is not full of hostile people, and that eventually I will be resilient again.

(PS: My font has gone all peculiar!)

Motivation to go back to work

When you have been chronically ill for a while, trying to do anything out of a very basic routine is exhausting both physically and emotionally. Emotionally you have to work incredibly hard to listen, engage and respond. Depression makes my concentration dreadful and I lose my train of thought often, and get blank spaces when I should be paying attention. I also forget things immediately and need to be reminded and re-reminded as the information will disappear permanently. Physically, when ill, it feels like you are walking through treacle. My body does not want to move, and almost has a palpable resistance. Getting up, dropping children at school and then driving through rush hour traffic to get to my work destination feels like I've climbed Everest even before I have walked through the door. Then I have to put on my happy face and try to deal with the chaos and politics of the office.

It's at this point I really start to question if I am actually well enough to be at work. When my SSP ran out from my employer earlier in the year, I applied for PIP. The benefit is for disabled folk needing extra financial support long term as their condition is limiting and debilitating. I was called in for an interview to discuss my diagnosis and symptoms with a "Medical professional" who would make a decision about my claim. I drove my car with my friend as I cannot do public transport as the chaos in finding out where to wait, when to wait, the anxiety provoked by missing the appointment, getting lost and being refused as I didn't turn up on time were too great. I did find where to park, but couldn't find the office. My friend helped me find where to go and sat with me throughout the interview for moral support. The "Medical professional" didn't even know what bi-polar was. "I'm sorry I'm not familiar with your illness, can you explain for me what it is?"

Feeling like I was being cross examined as a P.O.W is an understatement. I can only go on my own experience, but quite frankly, even if you paid me, I would never put myself through it again. You are expected to share your deepest thoughts, symptoms and struggles with a complete stranger, whose sole aim is to make you out to be a liar and sponger. I can appreciate that you have to be detached from the emotion of a situation and try and be pragmatic, but she was a piece of work. "So how suicidal do you feel on a daily basis, if it is on a daily basis?" How many days a week out of seven are you suicidal? So it's not all the time? So, explain to me why your intrusive thoughts impact on cooking? Right, so you think you might pour boiling water over yourself, stab yourself with a knife in the stomach or cut off your fingers, but you don't actually do that? So you can make a basic meal. Can you stand by the desk for me and bend your knees?" I cannot remember a time in my adult life when I have been so humiliated. There is an insidious shame attached to mental illness, because it's invisible, and if you cannot see it, it's not real. You feel that people will not believe your torment because it's not always apparent. You feel you have to justify yourself to everyone or they won't see the truth.  The general population feel like this and have very little compassion and sadly at this time in my life, this included my boss. I was declined for PIP. Apparently as I can stand up and sit down independently, make beans on toast and drive a car to the interview I am unworthy of support. I am living the dream. Oh and I still cannot do the laundry without thinking I am going to neck the whole bottle of fabric softener!

So, for me returning to work, I had a variety of motivators. Poverty for one, a desire beyond anything else to be well and back functioning as a normal person, escaping isolation, feeling that I am doing something meaningful and generally just trying to be like everyone else in the world. When you have worked your whole life, not being able to do it feels like a travesty. Although I am not completely tied up in work providing me with approval, self acceptance and self esteem, I do still yearn for a chance to do something worthwhile, pay in to society and have a sense of achievement.

Standing outside the entrance to the Church where I worked, I felt dread, fear and massive anxiety. I was being influenced by so many factors, I couldn't see the wood for the trees. It was about to get really horrible.

To phase or not to phase

So the lithium starts in November 2015 and by the 1st week in January 2016 I actually feel relatively normal. However, what I do not realise at this juncture is that I am precariously balanced on the edge of the recovery cliff. I have tested myself out in close quarters, with loving people and in a very gentle manner. It has felt positive, I have not had any meltdowns, hysterical outpourings or flailing moments of despair.

With hope and bravado I decide that maybe I could try and "Phase" back to work. I arrange to have a chat with some people from the church where I work with representatives from the diocese HR team. I am familiar with return to work antics. Where have you been, what has it been like, how are you now, do you think you are ready, can we support you, what is the plan. However this time it feels a little hostile. I am getting the distinct impression that the HR person isn't happy, and maybe even thinks that I am not genuine. What becomes patently clear is that my boss has not communicated with HR anything that has happened. Poor HR man is totally in the dark and pretty much thinks I have been on some kind of holiday for 9 months. I wonder why it is that someone would deliberately withhold relevant information from a key member of the diocesan team.

So when he asks me if I can explain in more detail what has been happening, I give it to him both barrels. After 15 minutes, summarising in particular my suicidal period, respite and medication chaos, I ask if there is anything else he might like to ask.  I can feel my rage bubbling under my skin and my boss has been making all kinds of eye contact with the ceiling/floor/pigeons outside etc. but not with me. HR man, God bless him, is totally appalled and with genuine concern, apologises for not realising how ill I had been and tells me he is glad I chose the land of the living.

In that moment I have clarity. My boss is not on my side, and he has been caught out. What doesn't bode well for me is that I am about to put myself in the snake pit. What I cannot fathom is why someone would want to do that. People are odd creatures. I have struggled since my diagnosis to be a fully functioning work colleague, and have worked incredibly hard to maintain any kind of career. The amount of times I hear, "Emma this is not about your capability, but you need to be here in the team in order to do the job." Mental illness is inconvenient to the corporate world.  I am not stupid, not even remotely. But my brain has a plan of its own which doesn't include my plans for work. I had a chat with my GP recently and explained that if you look at my CV but then looked at me in this moment, you would genuinely think we are talking about two totally different people.

It is beyond frustrating. As with any disability you need to have certain things. Firstly, to be visible and accepted for who you are. Secondly, to be supported within your disability to flourish and do everything that you are capable of. Thirdly, to not be treated like a low grade citizen, ignored, patronised or discriminated against. Being treated unfairly feels like a travesty. It debases your humanity and can makes you feel worthless. You need to have solid self esteem to suffer that kind of onslaught.  My self esteem is living on an island somewhere in the pacific and very rarely checks in. This is not a good situation. Far from it.

The mountain goat of recovery

I visualise my mental health recovery as a craggy mountain that needs conquering. I have to take on the qualities of the mountain goat in order to scale the dizzy heights and not fall down or break a leg. Assessing your journey is tricky. If you look down, you can see how far you have come up. The view is reasonably good and you can be fooled into thinking you have travelled far enough. If you are constantly looking up, the summit looks so far away that the climb appears impossible and you want to sit down and cease to continue.

Focusing on the moment in hand and keeping it the day for me is the only way to manage. And I have to test myself out to see how well I am doing. Living in the depressed head is like residing in a bubble of isolated sickness. Reaching out and communicating is incredibly hard. So when wellness creeps in, you can start to move backwards and forwards across the invisible barriers that have been separating you from the world. You can step out, dip your toe in the water and see what happens.

I can assess my wellness on a sliding scale of 1-10. 1 is under a bus. 10 is floating on the cloud of candyfloss with cherubs of joy floating around my head. I don't think I have ever reached 10 and on reflection, if I did, I might be a bit worried! But seriously, at certain times in my recovery, things start to feel easier. Physical changes like not needing to sleep constantly because everything is exhausting. Having energy after a year of forcing yourself to do even the most basic tasks and eating meals that actually taste of something.  Laughing and actually connecting to the feeling of happiness that is attached to it. Not that hollow caricature laugh that comes out of my mouth like a Pavlovian response to comedy as the "Appropriate" response. Being able to look someone in the eye. The tap of emotions comes back on too, but it feels like whoever is in control of the flow isn't quite sure at what speed the feelings are meant to be flowing. They come out in huge splashes all together and it gets messy and confusing or you get the wrong feeling in the wrong situation. The little emotion minions in my head get their memos confused and send the wrong response to the wrong situation. "Yes, he died suddenly". Small outburst of laughter. WTF. When a child begins to walk, they have speed and basic technique, but no direction, cannot stop and bump into stuff all the time. It would be amusing but it's also quite frightening. This is how my emotions work.

Also I check out my social situation resilience. Being in large social situations can be hideously overwhelming. You feel stripped naked and totally vulnerable.It's emotionally and physically loud.  Everyone else appears to be totally unself-conscious, in the moment, able to speak without thinking it through in total scenario form before speaking and generally happy. Being in amongst that is hard enough, but then you have to try and join in it's like standing on the 10 metre board, thinking about jumping and knowing that your swimming capability is limited. I tend to look like a rabbit caught in headlights. Thankfully most people get a bit drunk and generally don't give a monkeys about whether or not you are in a self obsessed freak out zone, or chatting about the food shop. My strategy for coping is this. Regular toilet breaks for breathing and refocusing. Reminding myself that it's OK to struggle and it's normal to find it a bit tough. Being selective about who I talk to. Toxic people in this frame of mind are bad news. AVOID. Listen lots and speak little. Leave if it gets too difficult. I will not miss anything of great importance by going home to bed.

It's funny as people do start to realise you are on a mental shift. I realised this when I went on a football tournament earlier in the year. I think I must have spent a large period of the season in relative silence. Standing on the sidelines I made a few sarcastic and rather caustic comments about a parent of another team, at which point people looked at me in shock and horror, as though the corner flag had suddenly spoken.

Recovery at this point is precarious. Returning to work, a really bad idea I found out.

Living with the attitude of others

When you exit your crisis point and begin walking toward the sun again, people tend to notice that something has changed. What this state of being doesn't indicate is wellness in all of its glory. The difficulty for other people living in your world is that they cannot identify accurately at what place you are on the recovery spectrum. For outsiders you are either ready to top yourself or well. This is not their fault. As I have said before, noone can see the inside of your head so unless you communicate what is going on, the general populous are clueless.

So when people know you are ill, they really like to tell you things. Over the years I have met some really unhelpful people who are ready and willing to impart their wisdom in relation to mental health, for my own good you understand. Let me share with you some examples:

1) You don't look mentally ill
This one always cracks me up. I'm still unsure to this day exactly how I am meant to look. Bless the taxi driver. He was taking me to my psychiatric appointment as I had been banned from driving for 6 months following a manic episode. He couldn't quite fathom or comprehend that the "normal" person in his car was of unsound mind.
2) Oh yes, I feel a bit depressed today too
No you don't. You're having a crap day and feel a bit pants.
3) I am so up and down today, I'm feeling a bit bi-polar
Are you hearing voices? Is your brain expanding at a rate of knots thinking with a wider capacity than that of God? Are you sprinting up and down the office at work and calling one of your closest work mates a c***? Did you offer to write pornography for a stranger on the street? Are you so agitated by the slowness of everyone breathing that you might smash a chair over someones head? Are you prepared to spend the entire contents of you bank account on handbags, matching purses and shoes? I think not.
4) Life has its ups and downs and you feel blue, but life is what you make it
If I could control the insanity thermostat in my head I would. Believe me.
5) Its all about positive mental attitude and thinking your way out of it
There is definitely space for positive thought, mindfullness and improved self esteem. However, thinking about unicorns and sponge cakes for 20 minutes doesn't cure an illness spanning approximately 30 years.
6) Why can't you snap out of it
See above.
7) Maybe you're not trying hard enough
Fuck off
8) I think you feel too much and are blighted with empathy. This causes you to experience the world with too much "volume" so you need to think about that
If I had a hotline to God, maybe I could discuss my physiological and spiritual make up and ask Him if he could adjust my volume knob and help me be less caring and more of an arsehole. Maybe that would toughen me up?

I could go on but I won't. I realise I sound angry and bitter. Most of the time I empathise (Yes that defect of mine) with other people as they are only trying to be helpful. They genuinely cannot understand what happens during periods of illness or how incredibly difficult it is to function. So when I begin to emerge from my most recent relapse, I realise that telling people what is going on might actually help. It's a massive risk though. People make irrational leaps when they don't quite grasp things. Mental illness = stabbing people on the tube. Slight exaggeration but you get the drift? So when people start asking me how I am, I decide in that moment with that person, to tell them what is actually going on. Letting people in is hard. It makes you massively vulnerable, open to ridicule and rejection. But it does connect you to the land of the living. Some people think you want sympathy. I am not that person. I don't need you to feel sorry for me, I would just like you to walk with me and understand. Some things I say might shock or frighten you. That is not my intention, but I do forget sometimes that most people don't live life with a horror film going on inside of their head.

So I commit to yet another level of honesty in my life. I invite you in and hope that this will help me to flourish.