A Frame of Reference

I've had a better day today.

I got up early, got out of the house early and spoke to people, mostly about stuff they wanted to talk about.

Yesterday I spent most of the evening at my amazing best mates house. She fed me, didn't expect conversation, and we played around with polymer clay for hours. By the time I got home I was exhausted, but it had been a good day.

A good day. What do I mean by a good day? Almost certainly not what you think I mean.

At the moment, right in the middle of a deeply depressive episode I feel like I am lost in a world of my own. Underwater, but able to breathe, its chilly, but not cold. I'm distant because I'm underwater. I can't feel anything, just like you feel the pressure of water on you when you are in a swimming pool, but you don't really feel anything else. And I feel like this all the time. I can communicate with you in the language that we all understand, but I can't make you understand my experience. I cannot explain to you what my world is like, because unless you have gone through the same thing there is no basis for comparison.

(My apologies now, as I will regularly quote science fiction, cult movies and TV throughout this blog. It is a place I escape to, which I find comforting.)

To quote Mr Spock in the Voyage Home when asked by Dr McCoy what death is like 'It would be impossible to discuss the subject without a common frame-of-reference.' Mental illness is a place you need to visit before you can understand what it is like. 

I am overwhelmed by feelings of sadness, but I am not sad. I am driven by self hatred, but I don't dislike myself. I am tormented by anxiety, but I want to go out and see people. I desperately want to be happy, but I know that will never happen for me. I live in a place where I feel nothing most of the time, but I have the capacity to experience joy unbound at the colour of a sunset.

Going outside and meeting people is exhausting. Not because I have to make the effort to get up, dressed and go out, but because I have to present this happy, coping, ok, normal face to the world. I have to perform for everyone else. There are very few people who have truly seen me when I have been in the deepest places of my pain. I hide it because I am ashamed. Because I am ugly in my desperation to find something, anything to hang on to, so that I can stay alive, just one more day, because despite how often i have felt like killing myself, I really do not want to die. I don't want the world to see that, because I don't want pity. I don't want people avoiding me because it makes them sad, uncomfortable, angry. 

So I staple my 'OK face' on and I greet the world. I perform the normality dance and everyone is happy. Except me. I am knackered. Its bloody hard work hiding how sick I really am. Its not even something I do consciously. Its something I've done my whole life, because to tell someone what is really going on in your life, well then they just judge you, dismiss you as a liar, an attention seeker, a problem, a criminal, a waste of space, lazy, stupid, pointless. 

I recently went to a friend's party. I wasn't in the mood, but I'd said I would go. I pasted on my smiling face and walked around pretending to be OK, while wanting to tell people to fuck off for suggesting the most idiotic and pointless 'cures' or 'self help DVD's', or 'have a drink, you'll feel better'. Then one of my friends who is wonderful, but this night was a bit drunk, announces 'I'm so glad you are happy again, you look so lovely when you are happy!' And bang, just like that, I had nothing left to say, nothing left to do but go home and feel utterly shit about myself. 

Why? Because I wanted to enjoy myself, but I was too tired. I didn't want to be there, but I had promised to go. I wanted to really relax and chill, but everyone has an opinion on my mental health and how I can cure it. Big news there, ITS NOT CURABLE! I'm never going to get better. the best I can hope for is lots of long term coping mechanisms, pacing myself, and getting stable. But getting better? Nope, never going to happen. My wonky brain is not going to suddenly reorder itself and repair the actual structural damage my childhood did to it. The disorganised brain chemistry s not gong to miraculously correct itself and start working right. It simply doesn't work like that.

Now sympathy is OK. Understanding is a little more problematic, because unless you have really been there, you cannot possibly understand. 

No, sorry, feeling a bit sad cos you didn't get the house/job/car/dress you wanted is not a basis for comparison. Having your good mood dampened a bit by next door's dog shitting on your front lawn does not equate to massive, irrational mood swings and anxiety attacks slapping you upside your head when you least expect it.

Being a bit distracted because you had an argument with your boy/girl friend is not the same as getting no sleep because your head has been racing around all night going over every single conversation you have had since you were six and then telling you that it all proves how stupid and irrelevant you really are.

And, honestly, I know you mean well, but self help books/mindfulness DVD's/exercise videos/special diets/just choosing to be happy instead type advice isn't helpful. In fact its incredibly insulting and upsetting. You wouldn't suggest to a diabetic that their foot will grow back of they just watch this DVD. Or that mindfulness will cure someones blindness. These suggestions are not about easing my pain, or helping find ways to support me in my journey to better health. They are about making you feel better by feeling like you are doing something. 

Honestly, I don't need you to do anything. Just be my friend without making any judgements about my health or making any suggestions for cures. Be supportive, be sympathetic, be sensitive. But really, don't try to understand, because you just have no basis for comparison.

Why Not?

I'm in a state of mourning. Not for someone that I love. Not for someone I know. Not even for a real person. 

I'm in mourning for the person that I thought I could become, if I could just get myself together for long enough to get a decent job, stay stable, save some money and have holidays, new car, resources, someone to love forever who would love me unconditionally.

That person will never come to be. My opportunity to be that person was taken away from me by my illness, by my complex mental ill health. It was also taken away from me by the people who were supposed to be caring for my health who decided that I didn't need to know about my diagnosis. The ones who followed on who failed to offer me real long term treatment for my diagnosis, but instead threw proverbial sticking plasters at me and were disappointed when I showed up again six months later, a year later, even 2 years later, still ill, still struggling.

I got angry with myself for not getting better. For just not trying hard enough to get better. And in those angry states I blamed myself for failing, I blamed myself for being ill. I blamed myself for just not trying hard enough.

During that time my physical health was also declining. But whenever I sought help for that I was treated as if I was a hypochondriac, I was making symptoms up. There wasn't a lump there, there wasn't pain from that, you are just drug seeking, attention seeking, you don't get pain there, its all in your head.

I'm not stupid. In fact I'm really quite bright. And that somehow, makes it all worse, because the curse of being very bright is self awareness. 

I can see and hear myself when I'm having a meltdown. I look and sound ridiculous. I look and sound like a child having a tantrum. I berate myself for getting anxious, crying, being angry at the wrong person, being for all intents and purposes a total fucking basket case. 

I hate living like this. But no matter how much I try to be like other people I just can't do it. My brain doesn't work that way. I'm fighting childhood abuse, school bullying, PTSD, chemical and structural changes and differences in my brain that cannot be corrected no matter what medication you throw at me. Yes, there are very real structural changes in the brains of people with mental illness. Look them up on Google. There's pictures too. They are pretty, and horrifying all at the same time. 

I'm difficult. I'm fragile. I have a sense of humour, even on my most lost days. I'm surprisingly resilient, because I really, really want my bloody life back. I'm cynical, because I know even if I get offered the help I need I'm still at the mercy of it being whipped away because 'someone else has a greater need'. Because mental health services are rationed, and portioned out just enough to have you appear OK, dressed, washed, house clean, and 'Oh fantastic, you have a job!' Out the door you go.

Because mentally ill people are still treated as if they have caused this to happen to themselves with drugs, alcohol, sexual promiscuity, being female, living with domestic violence, running away from home, suicide attempts, self harm, disclosing sexual abuse, not believing in God, believing in God and asking for help and then rejecting that help when it doesn't help. When in fact these are symptoms and not causes.

As an example, a man goes to the doctor with a persistent cough. Turns out this life long smoker has lung cancer. He's put on a list for treatment. Gets seen within 2 weeks. Has all the most appropriate treatment, until his cancer is cured, or until he dies, but all with lots of care, lots of patience, and loads of support. 

No one suggests that his smoking is the reason he is ill and therefore he did it to himself and the treatment will only be offered to those who never smoked or who quit more than 10 years ago.

No one says, 'Sorry, there are people much worse off than you, who will get the treatment instead'.

No one would even consider saying, 'well even though you still have cancer, we think you look well now, so off you pop, your treatment is done. See how you get on.'

So why is it acceptable to say this to someone who is bipolar, schizophrenic, has a personality disorder, PTSD, OCD, or chronic clinical depression and anxiety? These are life long conditions. They are also, if left untreated, life limiting conditions. In many ways they are terminal illnesses, as the incidence of suicide is so high amongst people diagnosed with these illnesses that it is seen as an inevitable outcome.

So why cannot people with mental illness be treated in exactly the same way, with the same expectations, and the same dignity as people with physical illnesses?

Why are you embarrassed about my mental ill health? I'm the one who lives with it day in and day out. No you. You get to walk away when it gets hard, messy, inconvenient, painful and upsetting. I don't. 

So suck it up buttercup, I'm not going to be quiet about it anymore. I am who I am, I'm bloody angry that my life has been blighted and I have been blamed for what was done to me to cause my ill health, and I am damned sure I'm not having poor quality treatment because you are a judgemental ignorant idiot who insists on remaining ignorant, because everything else is effort. You have no idea what effort is until you have had to spend half a day fighting your own brain just to get out of bed for a piss.

Good Day, Bad day, What a Waste of a Day

I fully intended having a good day today. Went to bed shattered last night and slept until 7.15, when I woke up feeling energetic and motivated. So much so I was out of bed by 8.30, put washing out, washed the pots, walked the dogs and had another load in the washer all by 12.

I was due a visit by the (un)friendly, neighbourhood Housing (Gruppenfurer) Officer about my 'overgrown' garden. A less sympathetic, understanding and tolerant pair I've not met since the last time I got queer bashed outside The Cossack back in the 80's.

Now I have a big issue with anxiety. Also I have a big issue with threatening letters from anyone. I don't give a flying fig-tree who you are, what your powers are, or even if it is a 'standard letter'. If you threaten me by post, what you get when you make an appointment to actually meet me is someone who is angry, frustrated, anxious, afraid and, to be honest, down right bloody rude. Be prepared for all of that to double up if you admit on the phone that the threats you have made in the 'standard letter' are actually empty ones, because you don't in fact have the power to do what you threatened in the letter.

So there they are on my doorstep. Oh they were NOT coming in my house. They were there to look at the garden. To actually come in my house I would need a weeks notice, a support worker, a mental health advocate and a fucking solicitor matey. So there you stay, on the doorstep. No hospitality for you. You can't be courteous to me by not sending threatening letters, then no way can I be courteous to you by inviting you in. I know better, I've watched every episode of Buffy and Angel. I know you don't invite the monsters in.

Apparently they are very happy that I have 'made a start' on the garden and that the weeds have now been cleared. What's the timetable for completing the garden?

I was gobsmacked. I have arthritis just about everywhere and a glass back alongside a Personality Disorder (which I'm still adjusting to the diagnosis of) depression, anxiety, PTSD, Bipolar Disorder, self esteem issues, being a survivor of childhood abuse and neglect, self harm issues, a history of drug and alcohol misuse, suicidal actuation and para-suicidal behaviour and general trust issues (though I really have NO CLUE where they come from). Really? You want someone who often can't get out of bed and feed herself to give you a timeline of when her garden is going to be acceptable to you? Incidentally, I have almost no income as I am shocking with money and most of my benefits are swallowed up by deductions for bills I've struggled to pay on time or at all, so I'm trying to sort the garden on ZERO budget, negative emotional energy and the physical capability of a mayfly with fibro and you want a timeline.

Cue blank disbelieving stare.

I went into the house and produced a copy of my GP report for my upcoming employment tribunal (more of that later). This explains in great detail what my mental health issues are.

I explained as patiently as I was able (so not very patiently at all) that they should never, ever send me threatening letters. Because these make me very anxious. That all communication should be by email, as I seem to never get the 'three previous letters'. That all emails will be acknowledged by me and if they aren't, should be resent. That I need help, not threats. That they asked me when they signed me up for the tenancy if I had any health issues, which I reported as they were known to me at the time. The housing Officer who signed me up was actually embarrassed and um'd and ah'd shuffling around on the spot when I spoke openly about my mental health. At no point did they offer me help or support with my tenancy, benefits advice, or available support for vulnerable tenants.

Why ask the damned question if there is nothing they are going to do with the answer, or is it simply a tick box exercise to prove they are caring landlords? Don't ask if you aren't also offering help, because I'm not going to improve your stats for nothing. You get extra money for hitting targets. I'll have some of that please, it is technically my money after all, as I do in fact pay council tax, and quite a high proportion of my rent.

So after they had gone, which was immediately after I terminated the meeting because I was about to get shouty out of sheer fury and frustration that they just didn't understand the stress they were putting me under, I sent them an email, asking what their expectations were with regard to the garden, as originally I was told simply to cut the grass on the front and clear the weeds at the back. Oh no, they said, its only if it gets overgrown again then i will have to contact them and give a timescale for when it will be done.

Erm, can I just explain again that if it gets overgrown again, its because my mental and physical health will have declined again, and there is no chance of me being in any state whatsoever to communicate with Herr Housing Officer, let alone advise when I will be able to get on top of the garden. How is this difficult to understand? Its not a won't communicate, its a can't communicate. I'm not uncooperative because I'm awkward (although to be honest for you two I would make an exception), I'm uncooperative because I am unwell, and I'm not ever going to get better. Would you be this unfeeling with someone who had become a wheelchair user? Had terminal cancer? Alzheimer's? Was just plain old? So why is it acceptable when someone is mentally ill?

So off you go the pair of you, educate yourselves on what you can do to support vulnerable, mentally ill people in their tenancies. Its not my job to tell you how to do this. you have policies, procedures and access to the internet. Go and Google it like normal people do.