(though not necessarily in that order)

(though not necessarily in that order)

Tuesday, 31 August 2010

GP versus Me

(probably part one of many, just to warn you)

I need to go to the GP. My joints getting worse is not an option to take with complete passivity and denial. However, that means going to the GP. There is the toss up between:
1) Utterly frightening GP man who has been the person who is the name is on all my MH records so has got huge amount of letters over the years (but I have completely avoided since I was 9, but was our neighbour for all the time until I was 13 so knows the family)
2) Some random GP woman, who won't know I'm not as scary/crazy as my records will say so may judge that I'm just a crazy person.

If they want to see my wrists, who ever it is will see my icky arms. If they decide x-rays are necessary, then a person at the community hospital will have to see my icky arms. If they want bloods done, then a nurse will have to see my icky arms.
All to possibly be told that there is nothing they can do. Or that it will just get worse.

My hands are so important to me. In effect, I earn because of my hands - without functioning fingers you can't be an organist. Or accompany exams. Or just enjoy playing instruments. Today, I haven't touched the piano because my wrists hurt too much.
I've denied that it will "just go away" for far too long. My mental health worker when I was 15 tried to persuade me to go and was prepared to make and then come to the appointment with me. Then it got better again just the occasional few hours of pain maybe once every few months. However, the past few weeks have been bad. Probably not helped by quite a lot of piano playing during the times when it isn't painful, but I've got to play. I'll go (more) bonkers without it.

I can see really old arthritic hands, with non-flexible swollen joints. See the grimace on my grandmother's face as she attempted to move in her last 10 years of life. Yes, very melodramatic to jump straight to that being my life, but it is a possibility.

I can't just ignore it, or let fear of the GP get in the way of perhaps finding some answers/ways to make it get better. I'm only 20, I shouldn't feel like my body is failing. If it is a case of wearing splints overnight to stop me from over-bending my wrists, then that seems the sensible solution. Because for how ever many hours a day I am asleep, most of those are spent with completely bent wrists as when I sleep my arms move into that position - which can't be good for them.

I'm scared they will laugh. Or will fob it off as just something psychological. Or will blame the physical stuff I've done to my body which is so evident from my arms. Or tell me to just put up with it, and to change my life from here on in. I'm scared of basically all the outcomes, but most of all I'm scared of having to admit I've got a horrible fear of being unable to play the piano.

First step is making an appointment and choosing who to see. Or rather, letting my Mum make me an appointment as I can't do telephones. Then I've got to tackle physically sitting in the waiting room, with a smell of GP-ness which makes me feel sick. Then deal with an appointment without making myself look like a complete imbecile. And come home and deal with whatever the immediate outcome is, deal with the inevitable dissection of every single thing I said/didn't say when with them. Then if they suggest something else needs doing, I'll need to deal with that.

It needs to be done. It is petrifying though. It may take some time to get done. But it needs to be done, hopefully soon. *panics and frowns as my wrists are really hurting now*

Saturday, 28 August 2010

Was it worth it?

Last therapy session: just over 4 months ago.

Was it worth it?

Current view is: Not sure. I'm certainly more stable, but it that just due to life improving? Problem with life is it has a tendency to change and I'm not sure what to attribute each change to.
I'm more aware of me, I suppose.
I've got more full of psycho-babble. Those words which only psychologists use, like "awfulising-catastrophising" or "Personalising" and "black-and-white/all-or-nothing thinking". *shudders at the ing-words which were seemingly omnipresent for the sessions*

Found out this week that my psychologist is pregnant. I seriously must have the most fertile care team in the universe - psychiatrist is now back from maternity leave, psychologist is a few months away from maternity leave, one of my CAMHS worker went off on maternity leave whilst I was with them too. I'm not seeing my psychologist anymore, yet somehow she is still "my psychologist" though. She always said during my last sessions "And if you need a top-up session, I'll be here. I'm not leaving the team". Except now she won't be there.

I'm pondering on seeing what I could do in the way of having some spiritual guidance. It hasn't yet got further than a ponder in my head though. After analysing my head from a simple "living, surviving" point of view, maybe it is time for trying to help grow in my faith? Then the doubts start - maybe I just want someone to talk to? Is it just a need for someone to sit and listen to me moan and think aloud? Is it just what most people would talk to a friend about, but as I don't have a friend I could do that with I am looking for some sort of "guiding figure"? (And could I really just do with being a bit more rigid with scheduling and setting aside some time to explore things on my own without someone else sitting there?)

Weekly therapy sessions where I sometimes just went in and went "urgh" for an hour are gone. I connected behaviour X to thought process A → B → C and found out it originated with experience Z. I created coping strategy P, with back-up coping strategy Q. I dealt with belief Yold and changed it into Ynew. I put in some graphs (she decided an analytical "looks like science" approach probably was most suitable for me), I found direct correlations between doing something and feeling worse afterwards. I collated tables of facial expressions, worked out what "frightened" looked like on a face, linked them to me feeling my experiences of those emotions, did field studies (well, sitting on a park bench looking at passers-by studies).

However, was it worth it? I'm not sure. Being aware might not have been beneficial, ignorance may have proved easier. (For example, doing behaviour F doesn't help from the stuff I did last year, but right now I feel like it might help short term so it feels an appealing option).

Life post-therapy will never be the same, I admit. Even if just a relationship with whoever was the therapist (or in my case as pondering about her steel-pan band that she once divulged about...), or a memory of the room, or some emotion or other. Do I want to be in the same dark place I was in before it? Of course not. Would I have done things differently? Yes, for one thing I'd have decided quite what my outcome was before getting into it (more than I did, which was "to be content. Not ridiculously happy, but content")

Hum. This wasn't quite the blog post I started writing 2 nights ago with a torch held between my shoulder and ear onto a scrap of paper that was by my bed at 3am. It'll do though, I suppose. *Sends off into the blog-o-sphere* *click*

60 weeks...

Sixty weeks from now I will have hopefully finished my degree.
Sixty weeks ago (almost exactly) was when I started refusing to take my medication completely. I'd only been out of hospital 6 weeks after an over-the-top reaction to the voices in my head left me "voluntarily admitted". (in quotes as it was a "However, if you don't come voluntarily, we will section you" situation)

Sixty. The number of seconds in a minute. Each second flies by, a minute isn't that long. The number of minutes in an hour, an hour isn't that long. Weeks zoom past, though each day seems so quick when looking back.

It is scary, really. After all the angst with life, to think I might be "done" with this degree in sixty weeks seems odd. To think 2 years from now I should be about to start my Masters. (because I finish my degree at the end of October, I'm not starting the next stage until the following September)

Plans have changed, adapted, been scrapped, some have emerged.

Y'know the "Where do you see yourself in 5/10 years time?" question that seems to crop up with Mental Health peeps often? Well, I've realised my answer has changed.

For quite some years the answer was always just one word. "Dead." Melodramatic, yes, but also true. However, 6 years down the line from when I first said it, I'm not yet dead.

My dream is to live a little cottage in the middle of nowhere either in fairly remote North Wales or Scotland. About half an hour from a university, so I can work there. So at some point before the dream can happen, I need to conquer the fear of driving, as public transport isn't brilliant in remote areas (found that out recently when I was having to make silly plans to manage a journey on public transport).
I'll have a piano, obviously. No television, but a radio. I'll eat dinner at a table for one, with music playing. Only answer the phone if it was on my terms and if I indeed must have a telephone. Internet needed more, I think.

My mum said a while back, "I can see you sitting in your croft looking out over glorious views, amazing music in the background, eating wonderful food you have made." I hope that to be the case one day. Even if the glorious views are hidden by thick fog, driving rain or low cloud - I know they are potentially there. ;)

I am happily a solitary being. Well, I think I am. I admit I haven't actually done living alone properly, but when ready I will enjoy it.

I know it will take years to get there. But the first stage from here to the dream is only 60 weeks away from being hopefully completed. Mind-blowing-ly bonkers. 60 weeks, that is basically the gestation period of a camel. (Side thought: what an utterly useless bit of information to have in my head!) It isn't very long in the grand scheme of things.

7 weeks from now, I'll be on the day after my final 2nd year exam. It is crazy how quickly time is going. Especially as I'm not panicking hugely (yet) about my exams. 7 weeks is a lot of time in the day-to-day life/revision time, just not overall.
*breathes a big breath and goes to live in denial of all this by playing the piano for a bit*

Friday, 27 August 2010


They are lots of remnants from when I was out of control ~2 years ago. Physical things like scars, the shorter hair (still obvious now, I had over a foot cut off to make it "easier to manage"), the pictures frames with their glass removed which I've never replaced.
Then there is a file in my email account. A file with over 6000 emails in it. All detailing stories where people had died brutally, been hurt as a result of another human being, and cases of life just not being kind to people. From literally dozens of websites, using the "Email this story" facilities. Some days there were maybe 100 emails sent. I was convinced I had caused these bad things to happen, so I needed to know where they were happening.
I thought about killing people, people got killed, it was my fault. The logic was probably flawed, but it was how it was. I thought about being a suicide bomber, then the next day maybe 50 people were killed in a busy market by a suicide bomber. I thought about stabbing people, then someone was stabbed to death. I thought about being a sniper, found ways to conceal a sniper in a car, people were shot. I thought about how floods could destroy huge areas of people's lives, and then floods happened.

This huge world of hurt was my fault. If I stopped thinking bad thoughts, maybe the bad things would stop happening. Or maybe, because I once thought bad thoughts, the world was going to always be bad however much good I tried to do.

Anyway, there is this folder on my computer with all these emails in it. Part of me knows I should delete it, for one thing it is probably making the email account (my work email account) much slower. But part of me, a little part of me still believes it. Still believes that I'll be found out for causing these bad things, or that I'll need to start collecting stories again, and having 6000 is a foundation for a possible "next time".

It is there. I never look at it though, not nowadays. But it is there. Reminding me of how things were. Quite frankly I'm scared to delete it. In a way, I believe if I delete it, bad stuff will happen in even greater proportions. It isn't positive to keep it, but getting rid of it seems too big a task.

The remnants of being bonkers are everywhere. I'm living in the town I've always lived in, in the house which tipped me over from "struggling" to "not coping" and this is just how it is. Can't help but think a new start elsewhere would be better. Then I remember how badly a new start went when I tried it last. One day...

Monday, 23 August 2010

Proof of a crap system

So, today I saw my CPN. Didn't say anything to hint about going slightly wonky brained again, she doesn't need to worry - it wouldn't have helped.

However, I got the care plan from my Care Plan meeting in June. How nice to get it so promptly in mid-August. *sarcasm*
The "anticipated outcome" for one of my "problems/need/strengths" is "to be successful through her job". Next column is "Main person responsible" and has my name in the box. No pressure there then, good to know I'm nicely supported with this.

The "Contingency Plan" box is empty. Bodes well, doesn't it?

In the "Review Notes" section it says "I am pleased with my progress, though did find work with the Unsupportive Support Worker quite stressful on occasions. However I did not give up and achieved much progress". (Edited to be in first person, and with the right names in) Gah. The "we can't be mean about someone who we hired, though we admitted in person she wasn't great" stuff.

The last page is a stonker of a crap document though. Find below a scanned in section of it. The little boxes are tick boxes on this document:

Now, I don't know if you can see from this (click on the picture for a bigger version of it) but a document supposedly meant to be given to all service users after a CPA has a tick box to say whether they have died. Just above that, there is a tick box to say that one of the "review outcomes" is "Client died (notify back office staff)"
Correct me if I'm wrong, but *surely* that isn't very positive and suitable for people to be given?
I'm one of the first people with the team to be using this document as I'm a fairly simple case at the moment. I was a guinea pig for this CPA system - all people in my area will be using it at their next CPA.

It is crap. I can't believe it. I agree they need a form for when someone has died, but it shouldn't be this form. Not when just tick boxes.

NHS Electronic Patient Record stuff, you have done stunningly badly here. You really have. You bunch of non-thinking twonkers. Please think next time you create a template to be used for something. Having a tick box on a form given out to people who are in mental health services saying they have died isn't great. I just hope with all my heart that no tired care co-ordinator filling in this form ticks the box by mistake before giving it to the client.

My brother's take on it was that I should have stabbed myself to death with the pen she should have given me to sign this document so she could fill it out differently now. However, she said "Oh, I'll just say you've signed it in my notes as you haven't got your glasses on so can't read it. I'm sure it is fine."

No wonder I didn't tell her my head is getting worryingly loud, when this is what it is like. And there is no chocolate in the house. I've searched and we have nothing sweet in. *despairs*


My head is noisy. To a point where functioning most of the time I need to function is getting tricky.

However, the quandary is whether to tell my CPN. One part of me says "yes, it is her job to know". The rest of me says "Don't bother, it will either result in medication, or overwhelming involvement of more of her team, or threatens of hospital, she'll tell my parents and nothing will help and may just get worse as a result."

My psychiatrist is back from maternity leave now. I almost don't want to admit I'm feeling rather mad as I'm her "medication is a load of rubbish" person. As in, I was given lots of medication for years and years, then stopped taking them and improved, to the point where she was happy to admit I wasn't someone for whom taking medication works. If I admit to my CPN, will an appointment be made with psychiatrist? Probably. It feels like I'm failing.
I don't want medication. I certainly don't want to be forced to take medication.

More of the team, or more of my CPN seems a tricky thing to cope with. I'm busy and an hour with someone takes more than that much time out of my days. Either by having to clear the house to make me look functioning, or make myself able to leave the house for out of the house appointments.
I don't want more of her, or more of the team. I've had enough of them.

Hospital is a big no no. I know they won't hospitalise me without good arguments, when they are stretched for beds and I'm not about to leap off a chair to try to kill myself. It would mess up my jobs, my studies, my life.
I don't want hospital. I can't, I won't, I'll not go.

Parents can't know. I'm well. I'm functioning. I'm fine. My head is going a bit wrong, but I'm 20 and I should have choice in the matter of who gets told. However, because they are "nice, incredibly supportive parents" my CPN deems it necessary to talk to them. Gah.
I don't want my parents to know. They've been through enough with me.

This is the problem. I've talked myself out of telling her because it can't help if she does anything like what I've written above. I'm not sure what else she could do. I'm not sure how she could help. I've got stuck again. My head will either get more noisy with more destructive noises than screaming children, butterfly flapping in a jar, a trombone doing a glissando up and down and up and down OR it will stay at this level OR will get quieter again. I'm not sure which will happen, now is very different to the last time I was this constantly noisily headed. I'm thankfully not seeing things at the moment. (always find a positive to balance up the negatives)
I might surprise myself and tell her. Problem with this lottery is doing nothing doesn't guarantee an outcome, neither does doing something.

Silence in my head would be nice. I'm in a way so conscious of going mad(der) again that I'm bound to go madder. A year of psychological therapy + 4 months post-therapy-"independence" makes me more conscious of it all. Right now, the thought of "would being so caught up in it but not feeling conscious of it like I was before be that much worse?" is fairly prominent.

It isn't much of a quandary really. I know I should tell her, but I doubt I will tell her. Hum.

The problem with a noisy head is "hearing voices" is deemed completely mental by most. Feeling anti-social, depressed or whatever, people somehow believe they know what it is like. Hearing voices is somehow another level of "mentalness" though. It isn't voices though, not at the moment. Maybe I am just mad and just need to effing accept it is going to be my life.

Before she comes in just over 12 hours time, I need to de-mentalise the house. Socks on the coffee table, empty bottles of wine behind the sofa, dead flowers from the side - all need to be sorted. I haven't seen her for a month, so the house isn't very sane at the moment. Appointments twice a week meant the house couldn't get too untidy in between, now though, it has. Ah, the joys.

Sunday, 22 August 2010

Operation: staying alive

This operation, code name "Staying alive" has been successful so far, however much I tried to do something else at times.

Anyway, this operation/task requires sorting out the future a little bit at a time. So today, I've made my next agreement to staying alive - I'm registered on courses (as of an hour ago) which will mean staying alive until January. Without this agreement, I probably still will be alive until January, but this is my way of telling myself no other option is more suitable.
3 courses. The last "free choice" bits of my degree, before the hard work starts in February for the final year of my BSc.

It is probably weird that I have this bargaining with myself to stay alive. When I was in the "die,die,die,die" phase, I used to tell myself things like: "I can't do it this week, it is Mum's birthday this week." or "I can't do it this month, someone very close to the family died this month 4 years ago." or "I can't do it in the next week, my students are about to take their exams and need continuity of my face at class." Sometimes this functioning exterior which kept me going meant I didn't do anything after that short time period was over. Sometimes it didn't and I was deemed to be in crisis again. Now, time frames are longer, but are there *just in case*. Agreeing to do the next 6 months means agreeing to live. In early December, I'll sign up to next year's courses, thus agree to live until next October.

A commitment to live is a bit binding, but how I do it. A realisation that by not upholding this agreement to live until the date I've set myself would be not just failing my life as I've created it, but also my courses means I've got to keep going. Hopefully enjoy lots, doing fun things, dealing with stuff, probably have wobbles, probably scream and shout and despair with the staying alive task, but do it. Stay alive.

I have this niggle I'll fail. I've strived to succeed so much I ended up turning myself rather mad. I also have a niggle in my head I'll run out of things to stay alive until at some point but hopefully not soon. One day it might just be a given fact I'm staying alive, it might be that life is enough to stay alive for I suppose.

Anyway, before next January, I've got to finish these 3 courses I'm currently doing. Then do the 3 short courses. So instead of spamming my blog yet more, I'm going to do a few hours work. And be grateful for staying alive until now. And cringe when I wonder how I'm going to pay for next year's courses as I'm feeling rather lacking in funds after today's registration for these courses.

Saturday, 21 August 2010

Florpufticulumpy brain splurge

Been a mental today. Met other "mentals". Could cope with the park, that was manageable, and lovely too. Got into the pub, and BAM, head mess started.

All the horrible precursors to a complete sensory overload/meltdown had started. I was shaking, trying to not twitch too much, trying not to turn into a blubbering idiot, trying not to shut down to the point of "hands over ears, rocking, muttering to self, unaware of people staring". My head was screaming. The rather distressing "butterfly trapped in a jar" noise in my head I've had recently was loud, the music in the pub was like my head was being slowly squished. If anyone had tried to touch me, I may have hit them - thankfully no-one did. My mouth was tasting weird. My eyes couldn't focus enough for looking through properly.

I hate I have this horrible body going all weird and head being messy stuff. If I could feel what I regard "normal" to be, I think it would be a completely different outlook on the world. I might decide "normal" is rubbish, but it must be very different.

Stripy socks or not, I feel uncomfortable in my current body. Tonight it feels like I'm being poked by a thousand little pins. My clothes don't fit as I've not replaced stuff from when I was huge, and I haven't lost enough to get into my non-fat clothes yet. Medium clothes (for not huge, not non-fat) were bought when I was on my way to huge, so I bought things whilst being (horrifically pessimistic, but realistic too) prepared to have a larger body fit into them.

Didn't help that a person I was at college with was on the train up. She came over to say hi, and is so confident and self-certain. I don't think I'll ever be that. I've become resigned to being at least a little mental for ever, so I don't think I'll ever be truly self-certain with life. There will always be the niggling thought saying "Stuff will go backwards again, it is so easy to slip back. It was once bad, always a possibility now" in my messy noisy head.

Life is OK at the moment. Sure, I have my wobbles, but they aren't huge mostly. My head won't ever be quiet, but I can deal with the incessant noises/chatter/rubbish. But sometimes I just go into utterly crap autistic mad woman mode. Trying to be sociable without the music façade to hide behind which I usually have is more tricky than I thought.

So to the people who I was with today who were lovely and looked normal, thanks. I'll do it again, just won't even attempt doing a pub. It may be avoidance, but to be quite honest, I'm not able to cope with everything and I think pubs are it. So, to my care team who think I should be fully integrated into everything and until I am, I'm not fully "well" (pfft!) I'm just going to make a childish face at you. *wrinkles up nose, squeezes eyes shut and sticks out tongue*

Tonight I feel all jumbled up. There isn't a huge heavy weight on my chest, but breathing isn't that feeling very natural right now (I'm sure if I wasn't focussing on it, I'd carry on breathing, but I'm aware I keep exhaling and not inhaling again for a while). My skin feels very weird, but tomorrow will be OK. I've got to be the non-mental musician tomorrow. Be part of the start of a marriage alongside my normal Sunday stuff. Life is weird, I've got a job where emotions are quite prominent, yesterday I did a funeral where so much sadness is and reflecting on the past, tomorrow a wedding with happiness and excitement for the future. I live as much as I can in the present, it is busy enough to not dwell too much on the past or get frightened about the future. Sometimes the present is just a bit... well... tricky, y'know?

Brain splurged. Brain tired. Body aching. Time for a dark room with suitable music and calming down my senses before sleep I think.

Tuesday, 10 August 2010

Music, grinning music

Music is great. Now, you all knew I would say that, didn't you?

Anyway, I've just got back from a lunchtime recital. By an organist younger than me, and far more talented than me - he is about to go off to a Cathedral Organ Scholarship, and has a place to be an Oxbridge organ scholar the year after.

It was phenomenal. Amazing. The kind of music where I'm glad I alive just to savour every last second. It wasn't subtle in the most part, but with the organ he was playing on, subtle would be a waste.
It started with some Bach, impressively executed. Then we got a little snippet of subtlety with Whitlock. Then Vierne. Vierne is just fabulous (and died sitting at the organ, which I reckon would be a good way to go). In the Final of his Première Symphonie I just couldn't help but grin. It is a wondrous piece of music which just sounds great when sitting in between the organist and the organ pipes as I was today, sitting in the choir stalls.
THEN, he played some Eric Coates that he had adapted from the orchestral versions - as far as very silly things to end concerts, a fiendish arrangement of the Dambusters March probably tops it. And that is coming from someone who once heard an improvisation on "Old MacDonald had a farm" to finish a programme. As I said before, completely un-subtle, but brill.

I'm still grinning now, after a dreary brisk walk to the bus station to find my bus was running 10 minutes late, a stuffy bus journey and a walk from the bus stop in which some truck driver splashed me as I walked along the pavement next to the busy road. Music has put a smile on my face. Even when I have soggy socks.

Not much more in life can give this level of excitement. Maths keeps me grounded, keeps me going, keeps me in awe of the world, the more of it I learn about the more I love it. Music gives me the excitement. The amazing grin, the all-over-shivers, the "eeeee".

I may be a mathematician. But music will never stop being part of my enjoyment of life. So now I shall do a few hours of maths, before going to play the piano for a few hours.

Life is all about the balance. My balance is so squiffy I end up falling over (literally and in life) but right now, the balance is right. I may be in a wobble at the moment with regards to life, the universe and existence (or purpose thereof) but I think I've found my place in the world. Though I wish cathedral choir stalls were less uncomfortable. *has an aching back* ;)