The unneccessary heirarchy amongst the mentally ill.

Firstly, let me say in advance that I know this post will piss some people off. I’m writing it whilst in the middle of a bpd funk, having being riled by someone else’s musings on mental illness. So I guess I’m just passing those feelings along lol.

So, there are plenty of different mental illnesses. Or rather, plenty of different diagnosis. One in four people will experience mental distress sometime in their lives. That’s a fact. It can range from grief induced depression, postnatal depression, an eating disorder etc, to psychosis, bi polar, schizophrenia etc. And there’s the bit which has made me angry.

We, all of us have had to endure discrimination from the general public. Whether it be a job we haven’t got, or not being invited to a party. A relative who tells us to grow up and cheer up, or a doctor who blames our moodswings on being fat. You’d think though, that within our mad community, we’d be able to get along. But no. Because my mental illness is worse than yours. So there! Or maybe yours is worse than mine? I used to have a diagnosis of depression. Then it was BPD. Now it’s BPD with psychosis. Does that mean I’ve moved a few rungs up the ladder? Do I now look down to mock the depressives? And should I look up and feel jealous of the schizophrenics?

When I was an inpatient I noticed a definate heirarchy in the smoking room. You received kudos for having multiple stays. Total respect was offered to those who’d spent time upstairs on the infamous Ward 3 (plastic cutlery and no matches allowed).  Superficial self harm injuries were laughed at. Cigarette burns were oohed and aahed over. You didn’t say no when the person who’d thumped a nurse asked you for a cigarette. Gossip about diagnosis was rife. The schizophrenics were special. Cool people. Ours had a guitar and nipped outside to buy dope whenever he was allowed off the ward. Then came the manic depressives. After that the depressives, although they generally stayed in bed all day and didn’t make it to the smoking room. Bottom of the pile were the personality disordered. It was almost considered an insult to whisper that another patient just had a pd. Perhaps the patients picked up on the negative vibes from the staff? We were definately regarded as taking up a bed which didn’t belong to us that’s for sure.

I spend quite a lot of time over on the Rethink forum. Rethink used to be a charity specifically for people with schizophrenia. It has since modernised and now campaigns for the rights of all people suffering from a severe mental illness. But the forum is still mostly run by the schizophrenics. And boy do they like to hammer it in that they are the most poorly, the most discriminated against, the most misunderstood. I don’t think that does them any favours. This perceived longing to be special, to be held up there as completely different to any other mental illness. Yes I don’t doubt that schizophrenia is a hellish illness. But so is bpd. So is bi polar. So is post natal depression. So is any mental health condition which causes you severe distress. Why do we get so hung up on diagnosis? Surely we should concentrate instead on how the symptoms make us feel? How they affect our ability to function? Whether recovery is possible and to what extent. Yes it’s true that the general public still mistakenly associate schizophrenia with violence, but having said that, the general public still mistake a diagnosis of mental illness as meaning the same as schizophrenia. I’ve been called a variety of things over the years. Schizo, mong, nutter, wacko, retard,fuckwit (i quite like that one), weirdo, madcow. We’re all lumped together so perhaps we should all stick up for each other and stop this infighting.

Yes there is a massive difference between a short lived, one off spell of depression, and a life long condition like Sz, bi polar or a pd. But the majority of the public won’t experience the latter. The closest they can come to understanding what it is like to be us is when they themselves experience depression or a relative or colleague does. The ad campaign called Time To Change is currently trying to change people’s perceptions of mental illness. I applaud them for doing so. Yet they are criticised this week by The Times, who’s columnist is angry that their ad does not include schizophrenia and is too positive, focussing as it does on recovery. In my mind this ad campaign is long overdue. There are still generations who’s understanding of the mentally ill is that we are all loons who used to be locked up for life but are now roaming the streets like rabid dogs. Anything which changes that view is a good thing.

So please, schizophrenics, stop putting yourself on a pedestal just because your condition has an organic cause.

http://www.timesonline.co.uk/tol/comment/columnists/sathnam_sanghera/article5663115.ece Times column on schizophrenia and Time To Change

http://www.youtube.com/watch?v=64EWjvxqbYg  Time to Change Ad

Switchboards, Officialdom, Hangover and flatpack furniture

I drank far too much last night. I woke up this morning to find a trail of clothes in the hallway, a house stinking of sweet and sour sauce from my takeaway, and a grumpy cat wanting his dinner. It was a great night though and lovely to catch up with an old friend. We were celebrating my being discharged from the pdoc whom I saw for the final time yesterday. She’s happy for me to continue taking the meds and said I can ring for an appointment if I need to see her in the future.

Today I’d really like to go back to bed. Unfortunately Argos are delivering the results of my recent manic shopping spree, so I need to stay up until at least 6pm. I’ll bet they turn up at 5.59.pm. I’ve also lost my rag with the strange neighbour after he put yet another strange note in his window this morning. I’m ashamed to say that I called him a nutter, amongst other things. I’m going to blame that on the hangover though. Now I’m trying to get through to either the police or the council to update them on the situation. I keep being transferred through to a fax machine. I haven’t heard from them since I made the statement, despite being promised that they would keep me updated. Anyway, I thought I’d post  pics of some of the notes here to see what you think. Is he mad? Or just bad?

Todays is apparantly an idea for a new type of board game. No photo for it as yet but this is what it says.

Game Show Time

Players: A victim
Conspirator
A policeman
Official

Components of Game
1) one council bin
2) three washing lines
3) A beware of the dog sign
4) the victim

Rules of Game

Place component on top of bin
Start
Form a circle around the bin and face inwards. Circle must contain equal numbers. Policeman and Official must face each other.

Are we ready?

Relatives must not face each other or the game is void. Now look down on the bin. Now look up at the person opposite only. Only the policeman and official can look at each other’s faces. Now look hard. What do you see.

Prize. An end to gossip and treachery against the victim.

 

Now I do understand the reference to the wheelie bin. We take turns to put everyones out for collection but don’t bother with his anymore so he has to put it out himself. However I wasn’t aware of a problem with washing lines, and no one has a beware of the dog sign.  I presume he has been visited recently by the police and estate officer, which is why they both get a mention. The relatives must mean his family. Perhaps he is also angry at them now?

I know the notes aren’t threatening but they do disturb me. After 8 years I know he’s not going to give up and I worry that things will escalate.

Ooh my flatpack shelves have arrived!

Feeling like I’ve let the side down.

As mentioned in my previous post, I’ve been having some problems with a neighbour. It’s my opinion that he suffers from some sort of psychiatric problem, perhaps paranoia or maybe the early onset of dementia as he’s in his seventies. After years of unsociable behaviour towards myself and other people on the street, he has taken to posting notes up in his window about us. The lastest talks about his struggle to deal with the conspirators.

So the upshot is that I have spoken to the police this weekend and they will be visiting him shortly with a view to getting him assessed under the mental health act. However, they doubt the CMHT will agree to assess him because a) he hasn’t been charged with anything yet, and b) he isn’t violent. So that leaves them with the options of either arresting him for harrassment and then sectioning him once he’s outside his house (it can’t be done on his property) or contacting social services because he has a young daughter living with him.

I feel like I’m betraying one of my own kind. However unpleasant he is, if he is mentally ill he is like me. And I would hate it if someone tried to have me assessed against my will. There’s a kind of them and us attitude between the mentally ill  community and officialdom, and I don’t like going over to the other side. Also, I have friends who have suffered at the hands of overly zealous social workers. Friends who have lost access to their children because in the past they have had a breakdown. If my neighbour has managed to get through life without being picked up by the CMHT so far, am I really doing him a favour now? Let’s face it, an assessment doesn’t automatically mean he will get help. It might just make him even angrier to us all.

The police were meant to keep me updated and should have rung me yesterday, but so far I’ve heard nothing. I’m wondering if they’ve looked me up on their system and realised that I’m also flagged up as mental. In which case, anything I’ve told them will be taken with a pinch of salt. They may not mean to be prejudice but you tend to see that look in their eyes as soon as you disclose it. In my last neighbour dispute I had to agree to drop some of the charges because I was deemed unfit to give evidence in court. So a man who threatened me on almost a daily basis for two years, received a years probation for harrassment rather than a prison sentence for threats to kill.  This latest dispute is nowhere near as bad, yet I wonder if my past experience is impacting on it. I’m coming out fighting this time, rather than being a victim. Perhaps as a result I am being too hard on him. Damn I wish I’d never had group therapy. Decisions were so much easier before that lol.

Dad gets his scan results today, so I’m rather on edge. Another reason why I’ve spoken to the police perhaps. I needed to transfer my anger onto someone else.

Today is a good day though. A new president in the USA. A black president no less. A president who doesn’t make me cringe and turn over every time he speaks. Hopefully the mood of optimism and change will reach over to the UK too. We certainly need it.

Shopping on no sleep. Not the best of ideas.

Oh bollocks I’ve done it again! I should never ever go near a shop when I’ve been awake all night and still don’t feel tired. It’s a basic no no for me. I only went in to post some parcels (presents to friends, because I’m Lady Bountiful when high) and came home £200 lighter. On the plus side I did open a savings account, but I also bought two massive jazz singer ornaments, which don’t go with anything in the house. I felt sorry for the shop lady because her shop was empty, so I coudln’t leave without spending some money. Also came home with three bracelets, some more jeans, a huuuuuge candle, and am already sat here thinking about what else I could get if I went back in.  In the last four days  I have also purchased a smoothie maker, 8 dvd’s, 40 bananas, a cd tower, one of those posh room fragrancers with twigs in, and some new boots.

I’m not in the slightest bit tired. I’m not diagnosed bi polar but I do get these occasional mixed episodes where I don’t sleep and usually shop or cut or give money away. Well I haven’t cut, and I’m determined not to. I’ve been giving money away to every charity collector or big issue seller I’ve come across in the last few days. Why do I never recognise the signs? Because I’m a fuckwit that’s why lol. Btw I’m in a swearing mood today. I love that word; fuckwit. I have this massive urge to hang out of the window and shout it to passers by.

Well at least the self pitying mood from last night has gone for now. Can’t wait to see what the next mood is going to be. It’s like playing on a slot machine. Ooh that reminds me. Must buy a lottery ticket too.

Can’t sleep and the monster wants to come out to play.

I didn’t expect to still be awake at 5:30am. For some reason the pills haven’t worked their magic tonight and I’ve spent the last few hours curled up on the sofa staring at the cushions, and latterly, laughing to myself whilst trying to remove the fixed grin on my face. I hate those mini highs, when my eyes feel like they’ve been glued together through lack of sleep, yet I can’t keep still and the thoughts are racing through my head. I’m still smiling now, though there is a maniacal edge to it. The me who is smiling is also the me who wants to slice into my skin just for the hell of it. She wants to dance round the room then go play on the railway line. Go down to a&e and chat up a few doctors. Bounce off a few walls. Sing out loud then stab a few pensioners. You get my drift. She’s not a particularly nice person.

I think there are at least two of us. The first is the gatekeeper. She takes her meds because she knows it’s the sensible thing to do. The grown up. The square. God I hate her, she’s so bloody boring. She reminds herself constantly of the coping strategies she has learnt in therapy. She plods along in her boring life, acheiving nothing apart from her most important job. Keeping the gate locked and the monster on the other side of it.

Because that’s the other me. The one who no one sees. The one who puts pictures into my mind of violence and rape and rage. I think she does it to taunt me. To remind me she is still there. She wants to be let loose to cause havoc. She is emotionally a child, but with the strength of ten men. All my life she has been lurking there in the background, grumbling and complaining and wanting to be set free. She’s never quite managed it. The boring me has usually gone to the doc and asked for more pills. Or taken an overdose to kill us both.

And then I suppose there is the me who is writing this down. The one who just wants it to be over. This constant fight between the other two. The one who wants to let the monster out, but only if I can disappear at the same time. That way I don’t have to take responsibility for the carnage. The relief of just letting fate take its course. Why am I taking pills to put off the inevitable? Surely therapy and meds are for people who can aim to lead decent lives. Why don’t the doctors and therapists see through my disguise to the evil underneath? If I was a decent person I would kill myself, rather than risk ever hurting someone. But I am a coward. I put it off day after day, living a pointless existence because I’m too scared to die and too scared to live. My head gets so full of thoughts I wish I could get my fingers under my skull and pull them out.

I don’t know why I feel like this tonight. It could be pms or it could be because my gp remarked that I’d been doing well for the last few months and therefore, I have to prove him wrong. It could be worry over my Dad but in that respects I am never happier than when involved in someone elses crisis. I take other people’s misery and use it to garner sympathy for myself. You know what I spend hours imagining these days? Getting cancer and all the attention that goes with it. I am one truly sick bitch.

Happy New Year

Happy New Year to whichever drone at the DWP thought it would help to send me an IB50 form on the last day of 2008. What a great way to end the year. However, I am determined not to fall into the trap of reflecting on what has gone wrong in the last 12 months. If I did I’d be spending the chimes of midnight on a railway line with a bottle of vodka, whilst listening to leonard cohen on my I-pod.  Actually, that might be ok. Don’t the trains stop running early tonight? So, instead, here’s my list of what went well for me in 2008.

I started a blog! And more amazingly, I kept going with it. Thanks mostly to the occasional reminder from Lola to enquire where I am. Lola you are the Mr Motivator of wordpress. Thankyou xx

I didn’t stab any neighbours, push any old ladies over at Sainsburys, or take my clothes off and run down the high street. Those were all bad thoughts, not reality. However, I regard the thoughts about firebombing my local PC World as a failed opportunity.

I singlehandedly protected my local retail park from the economic slowdown.

I did the same for Ben and Jerries icecream.

And Pizza Hut.

I kept up with my friendships and maintained a close relationship with my Dad, despite the urge to hide in the house and wrap the phone in tinfoil.

I stopped watching Eastenders and within days was able to lower my dose of anti depressants.

I limited my online forum arguments to one per week, and got away with just one temporary suspension and no permanent bans!

On a more serious note, I survived the year. I didn’t become another statistic. And that’s something that all of us who live day to day with mental illness should congratulate ourselves on acheiving. Well done us!  May we continue into 2009, driving our GP’s up the wall, giving our CPN’s stress induced rashes and personally stealing the hard earned money of every saintly tax payer in the UK. Happy New Year everyone xxx

Trying to see the GP

My local surgery looks amazing. It moved out of the old, rather squalid and prone to flooding terraced house and into a superduper purpose built surgery last year. There’s a nice big waiting room, plasma tv showing Jeremy Kyle, and a special screen to book yourself in without having to annoy the receptionists. There are 9 gp’s in the practice, along with three nurses and several care assistants. They even have a new agey type bloke come in to do alternative health sessions. Fantastic! But if you want to get an appointment you’ll have to join the queue on the phone at 8am.

Now, on one side, releasing appointments on the day is a great idea. No more having to wait five days to see a doctor when you’re dying of flu. But ask anyone on anti psychotics what they are doing at 8am and they’ll tell you they are either fast asleep in a pool of drool or trying to do a runner from A&E before the on call pdoc finishes his breakfast and arrives to section them. The last thing they will be doing is ringing their gp.

But what about reasonable adjustments I hear you cry? Or perhaps not if you’ve never heard of them. Well, Gp surgeries are supposed to offer these adjustments to any patient with a disability. That means that, where possible, they provide a quiet place to sit and wait, an understanding that talking to yourself doesn’t mean you’re about to stab the receptionist, and flexibility when it comes to making appointments.

Unfortunately the computer at my surgery says no. So it looks like I’ll be staying up all night on Thursday in order to see my own doctor the next morning. He only works Friday at my local surgery and I’m really not up to making two bus journeys to find him at the other one. He is insistant that I see him rather than another doc, and this is the last chance I’ll have for a chat before Xmas, a stressful time for me. So this week I shall be going to see him armed with a booklet from Rethink, entitled Reasonable Adjustments and your local gp surgery. Perhaps between us we can persuade that computer to be nicer to me in future.

Swimming through quetiapine flavoured treacle

I’m beginning to question whether being on an anti psychotic is a good thing. That’s not uncommon with me as I tend to stop taking pills shortly after they start to work, but in the past they’ve only been an anti depressant.

I feel so much calmer these days, but am I calm or sedated? I realised lately that the majority of my days follow the same routine now. Wake up after midday. Transfer to the sofa. Take pill. Sleep for another hour. Get up and go to the supermarket for carb laden food. Come home, eat, watch tv, talk to friends online, go to sleep for 14 hours. The only change from pre Quetiapine days is that I sleep a lot longer than I used to, and that my inactivity doesn’t really bother me. That window during the day when I can do things and meet people has narrowed considerably due to the drowsiness. If I have something major planned, like the Rethink event last week, I have to skip my pills for 24 hours. But, and it’s a big but, I haven’t had an urge to self harm for ages and I don’t obsess about suicide every day. I suppose I have to weigh up the pro’s and cons and should probably stay on the pills at least until the winter is over. They are the reason that I haven’t been posting as often though.

I mentioned the Rethink agm. What a lovely bunch of people! And another indication of how much anti psychotics are helping, because without them I wouldn’t have got on a train and gone to a meeting in a big posh hotel on my own. Rethink, for those who don’t know, is a leading mental health charity which campaigns against stigma and for the rights of people with serious mental illness. (They think I qualify as a borderline even if my pdoc doesn’t). I travelled there on my own but with the intention of meeting Charlie and Ellen, two lovely internet based friends. It was a rather surreal experience, stood in a foyer amongst a crowd of people, trying to find two friends whom I’d never seen in person before. But we got on like a house on fire, even if Charlie did drag me off to the bar for a drink and a gossip (I took loads of persuading lol), thus making us miss one of the seminars. I had such a good day and I can’t tell you how cool it was to be around people like me and to see us all doing something positive together. I was proud to be mental!

Now back down to earth again and a quick update on my Dad. Alison, thanks for asking how he was getting on. It turns out that his cancer isn’t kidney cancer as suspected, but something called transitional cell carcinoma of the ureter. He had his kidney removed, which contained an aggressive tumour. His lymph nodes were also malignant, so he’ll start chemo in January. Fortunately he can do this as an outpatient so at least he won’t be stuck in hospital again. At the moment my stepmum is concentrating on feeding him up before he starts the treatment. He lost a huge amount of weight after the op because he didn’t eat for nearly two weeks afterwards, and felt nauseous for a long time after. I’ll pop over again next week to see him and we talk on the phone quite a lot. I hate this so much though. It feels like the cancer has a grip over us all. As a family our lives are now governed by distinct stages. Diagnosis, Op, Recovery, Chemo etc. How can I feel positive about a treatment which essentially poisons the body? It feels like a temporary break now over christmas until we start the next chapter. But at the same time, I am a bystander. I can’t possibly understand what it’s like to be Dad right now. He’s so positive about it all and just calmly accepts each stage of the journey. I’m the one who is angry and wants to hit out at someone, even him. Fortunately I am only on the periphery of it all. I really feel for my stepmum who has to be supportive 24/7. On a positive note though, I am so much closer to her as a result of all this.

So that’s what’s happening with me at the moment. Oh and something I’m loathe to put down here because it makes it real. The engineers are coming to look at my heating on 5th December. That means I have to open the front door and let someone into my house. Probably two people because they always bring a spotty, lank haired trainee with them. I’m trying to be positive about this. I’ll have hot water and heating for the first time in two years. But there’s a LOT of cleaning to be done in this midden between now and then. Wish me luck!

The downside to internet based friendships

Like many people with a mental health condition, I isolate myself. As a result, I have only two ‘real life’ friends, whom I see maybe once per month or so. However, when it comes to the internet I have a whole plethora of friends just a click of a mouse away. These are the people who are around when I can’t sleep at 4am. The ones who I can tell my deepest darkest secrets, whilst hiding behind the anonymity of a computer screen.

Are they real friends? We watch tv shows together. We bitch about our family. We fall out and make up again frequently. We have a drink together, albeit in different houses or even different time zones. We miss each other if a few days pass with no contact. We’re often the first people we want to tell when something big happens in our lives. But for the most part we don’t know each other’s address or phone number. We don’t know what each other looks like or even each other’s real name.

An internet friendship can be transient. If someone annoys me I can block them on my msn and forget about them. I can easily find another new best friend by joining a different forum or chat room. I can change my username and start again. I don’t have to worry about that embarrassing moment when I bump into them in town. I recently discovered that someone I talk to in a forum lives just round the corner from my house. It made me shudder. Too close! But we could still pass each other in the street and be none the wiser.

This week, the distant nature of these friendships has been brought home to me. I speak to E almost every day without fail. We share the same sense of humour. We both struggle with longstanding mental illnesses. I look forward to seeing her each night when I log on to msn. She has supported me through so much and I’d like to think I’ve done the same for her in some small way. This coming weekend we are due to meet up for the first time in ‘real life’ when we both attend the agm for Rethink.

But E hasn’t been online since last weekend. This has never happened before. The last I heard she had suffered a major blip and was on hourly phone calls from her crisis team. She has since fallen off the radar. The last conversation we had has me very worried. I’m hoping she’s in hospital. I’m dreading that she may be dead, perhaps not even yet discovered. As a borderline, I know I have a tendency to catastrophise, but I can’t help but think the worst. Perhaps though she is just nervous about meeting in person and has shut herself off from me. I’ve done the same myself in the past. But she hasn’t been on any of her usual forums or spoken to any of her other friends. I can’t phone her. I don’t have her number. I can only keep my fingers crossed that she will turn up tomorrow as planned. If she doesn’t I may never know what has happened to my friend.

And yes, she is a friend. It doesn’t matter what format we use to talk to each other. I miss her. I worry about her. I desperately want to help her. E, mate. If you’re reading this, just let me know you’re ok. xx

How Mad are You?

Just a heads up about a programme starting tonight on BBC2 at 9pm

Entitled, ”How Mad are You?” it involves a group of ‘mad’ and ‘normal’ people being scrutinised by mental health experts, who then have to try and choose which of the group are mentally ill. I’m not sure if this is going to be a sensitive documentary on what it is like to have a mental illness, or the psychiatric equivalent of the X factor. I’ll reserve judgement until I’ve seen it.

http://www.guardian.co.uk/society/tvandradioblog/2008/nov/05/horizon-how-mad-are-you