Dear Miss Chouette

Due to unforeseen circumstances the appointment for you to attend the
Dr OtherRandomDude
Monday 1 August 2011 at 10:00 am

has had to be cancelled.

A new appointment has been arranged for you to attend the
Dr OtherRandomDude
Monday 15 August 2011 at 12:00 pm

I apologise for any inconvenience this may cause you.

Yours sincerely

I. DontGiveAProverbial

Patient Services Manager

As before, letter verbatim, names have been changed to protect the not-so-innocent.

Perhaps I should open a book on when this appointment will actually occur?

Dear Miss Chouette

Due to unforeseen circumstances the appointment for you to attend the
Dr GetAJob’s clinic
<date in June>

has had to be cancelled.

A new appointment has been arranged for you to attend the
Dr OtherRandomDude
on <date in August>

I apologise for any inconvenience this may cause you.

Yours sincerely

I. DontGiveAProverbial

Patient Services Manager

Letter verbatim, names and dates have been changed to protect the innocent (?).

Seems I’ve imagined Him all of my life
As the wisest of all of mankind
But if God’s Holy wisdom is foolish to man
He must have seemed out of His mind
Even His family said He was mad
And the priest said a demon’s to blame
But, God in the form of this angry young man
Could not have seemed perfectly sane

God’s Own Fool, Michael Card

For me, my religion is part of me, it defines who I am, it affects the choices I make, the opinions I hold. There is nowhere God is excluded from, no relationship he is not part of, no time that he’s asleep or on the loo (if you ever doubt that God is above a bit of potty-humour, check 1 Kings 18:27, or for that matter 1 Samuel 5:12.).

Yet, almost without exception, I’ve found that mental health “professions” seem to have slept through all their RE classes at school, not to mention all those “equality and diversity” drives that the NHS seems to like putting up posters about.

Some of the corkers that most stick in my mind, are the nurse who told me it would be preferable if I talked to my family rather than people from my church, as my family “would be there for years to come”, as opposed to the people with whom I actually had things in common, who were just “a bunch of strangers”. I think quite a few concepts had flown right over his head, but the most glaring was the fact that my familly don’t believe in a life after death, which kinda shifts the “sticking around” balance back in favour of church folks.

Then there was the worker who, while assessing me for their service, asked me about social contacts etc. I told her that I wanted to go back to church, and get involved in my bible study group again. “Oh no!” she said, sounding a bit confused. “You can’t talk about that yet, religion’s at the end of the form”. Which left me wondering if, not social, were those needs… unsocial? anti-social? non-social?

And then there’s the ones who never even bother to ask, even though faith and my expression of it is a very good indicator of my mood. When I’m down, God is still there, and my faith is too, but the gates are down and the blinds are closed – I lose my ability to pray in “words” and my ability to remind people that these things are important to me. When the illness speaks to me, and tells me things, I may easily mistake it for God, who has spoken to me in the past. An easy mistake to make, but a potentially deadly one. When I have strange experiences, I may not be sure whether I need an exorcism rather than a psychiatrist. The ironic thing is that over the past few years, I’ve suffered from having very puzzled (and seemingly unconnected) people randomly telling me Jeremiah 29:11 is a significant verse for me. But then, I never am quick to take a hint when it’s really needed.

To be honest, all that these experiences have done is to make me feel stigmatised, part of a minority – that if I talk about anything related to my faith, it’ll be written off as not-appropriate, or a load of rubbish, or that I’ll be deeply offended during vulnerable times.

But apparently it’s not just me… pages 14-17 of this paper strike a lot of bells with me.

I guess that some of you guys might not be able to relate to this post, but if you do then I’d be really interested to hear what your experiences are.

Please describe health problems and diagnosis.
Recurrent depressive disorder

Medication prescribed:
Venlafaxine XL 150mg od
Trazodone 50mg nocte

Please indicate main symptoms
Loss of interest & enjoyment, lack of motivation, recurrent suicidal thoughts, depressed mood.

In your opinion was Ms Chouette continously unfit for work between 23/11/09 and the 7/6/10
Yes

Any other comments:
Currently recovering from depression. An occupational therapy assessment has been done and she is being encouraged to return back to work. Physically well.

Thanks for the support Ms Psych, that’ll look great when my ESA is reassessed next month.

I guess I’d better procure a copy of the “occupational therapy assessment” so I can highlight the section that said I wasn’t fit for work…

Why…

… do I have to make the first move?

… do I have to put in all the effort to have a social life?

… did you never get in touch after you moved?

… do I have to follow everything up?

… do you assume I’m just being polite when I say I’d like to come round?

… when I call you, do you always say you were thinking about me?

I know what my reasons for not being good at staying in touch are, and yes, I share part of the blame. It’s difficult to deal with this stuff when you’re “ill”. But I don’t understand why you do it.

I really really miss you. I just wish you were missing me…

When I heard their outcry and these words, I was very angry

Nehemiah 5:6

Last week I had an appointment with my psychiatrist, but it’s only now that I’ve calmed down enough to write about it. I’ve always had issues communicating with my psych – she has the power to clear my mind of everything I had prepared to say – leaving me with just ummms, errrs, and a desire to leave the room as soon as possible. I’m not sure why I find her so intimidating, but I do know that she makes very little attempt to alleviate this, and that responsibility for making conversation falls entirely on my shoulders.

The last time I saw her, this culminated in being discharged, just after I had been accepted by the CMHT. Apparently this “is very unusual” – all I knew at the time was that noone seemed to believe I had really been discharged, and I was even asked for the punchline – it took some effort to persuade other professionals that I really wasn’t joking, and she really had discharged me.

Perhaps some background would help here – during 2009/2010, my psychiatrist was failing to acknowledge letters being sent to her (with my consent) by my YP-place worker, detailing her concerns, and my psych appointments were proving to be slightly less common than hens’ teeth. My worker was concerned enough to discuss my case with her manager, who wrote (another) letter to my psychiatrist threatening to make a formal complaint.

This appeared to have been the magic phrase, as a couple of days later my psychiatrist made a phone call to my YP-worker.  All I know about this call is what I’ve been told by my worker, but I’ve been told that she sounded very “defensive”, and said that as I didn’t have a “severe and enduring mental illness”, there was nothing she could do. Luckily for me, YP-place stuck to their guns, and she eventually agreed to refer me to an occupational therapist, insisting that there was no point as “they won’t see her”.

Needless to say, the OT disagreed, and agreed to see me for 3 months, which stretched into 6 months, after which he had to discharge me as I’d only been referred for “short-term intervention”, but he encouraged us to push for a re-referral to the CMHT in the near future if we felt I needed it, and re-referred me to my psychiatrist to discuss issues of “risk and function” that had come up in the time he’d been working with me. My worker thought this was a positive step forward, and offered to come with me to help me explain how things were.

Suffice to say that, we need not have bothered preparing for this appointment.  My worker and I discussed “risk” in some depth beforehand,  and I was very honest with her, as I believed that this was my only chance to be honest with my psych.

Instead, my words yet again deserted me, so my psych started telling me that she “thought I was better”, and my venlafaxine was going to have to go up – oh and I should take my sleepers at 6pm to avoid the pill hangover in the morning.

My worker tried to bring up the subject of risk, but my psych didn’t really take the bait. Instead, she told me that “we’ve tried our best“, and that I’m “not a child any more“. Apparently, I need to “behave more like an adult“, and “take some responsibility for my choices“.  If I “motivate myself more” then my problems will be solved, and I need to sort myself out because “with the new government” it will be really hard for “physically able people like myself” to prove that they’re incapable of work.

If my worker hadn’t been there, I think I would have taken that advice much more to heart. After all, when I go to see a doctor, they’re in a position of authority, see many patients like me, and (generally) tend to know their stuff – it’s hard not to listen to what they say.  In one fell swoop, she would have set me back about a year with respect to the progress I’ve made on asking for help when I need it, and not trying to take responsibility for everything that happens to me.

You see, what my psychiatrist doesn’t know, is that if I were still a child, I would not be in contact with mental health services, I would not be on antidepressants, I would not be trying to turn my life around. I would be sat on my own, in a bedroom with no working light, trying to end it. There was noone who would sort things out for me and see that I was ok – instead I was routinely ignored and just left to be weird, as if I were the proverbial elephant in the room.  I only managed to tackle my teenager issues once I became old enough to drag myself up by sheer force of will, and encountered some perceptive sixth form teachers who gave me the space I needed to put myself back together, and the approval that I needed to build my self-confidence.

My psychiatrist also doesn’t know (and hasn’t asked) that I’ve spent the last 6 months putting a lot of energy into doing the “adult” thing, and fighting the DWP, that I was preparing myself to represent myself at a tribunal, and thus trying to do the responsible thing and stand up for my rights as a British citizen.

I am painfully reminded of my adulthood every time the council bill me for my council tax.  I pay my bills (mostly) on time, I make sure I have a roof over my head, I give my seat to elderly ladies on the bus (if I’m not feeling too ill myself), I gave half my DLA Christmas bonus to the guy who sells the Big Issue.

So, what gives my psychiatrist the right to remind me that I can’t be childish anymore, that my lost childhood is, well, lost? And to then twist it around and make it my fault?

I am not a child any more, I am an adult, who understands adult things, that the people in authority aren’t necessarily right. An adult, who has room for feelings like “righteous anger”.

She gave me another appointment, for June.  I’m fully expecting to be discharged again at the appointment. I’m staying on the same venlafaxine dose, and I’ve stopped taking anything at night. Ironically, I’m feeling much better in the morning now, and I suspect that I was suffering more from the side effects than I had been benefiting from it.

Bonus points to anyone who can explain the title of this post.

It makes me sad that it has to be “cancer” to make it onto the telly, but I’m still glad I watched it. It expires next Tuesday, the 18th January, it might be interesting viewing if you have a spare fifteen minutes, as you can fast forward past the benefit-fraud part of the programme.

I’m not crazy, I’m just a little unwell
I know, right now you can’t tell
But stay awhile and maybe then you’ll see
A different side of me
I’m not crazy I’m just a little impaired
I know, right now you don’t care
But soon enough you’re gonna think of me
And how I used to be

Unwell, Matchbox 20

1) Make a claim

On 7th June this year, I phoned the new claims line, and made a claim for ESA in Youth. I asked the lady at the other end of the line if there was anywhere to note that I wanted to apply under the youth rules, and she told me that it should be picked up from the information I’d given.

2) Submit evidence

On the 9th of June, I received a copy of the information I’d given over the phone, and with it a request for me to submit “evidence to support my claim”- a sicknote “from the 8th day of this claim” and “proof of education and training”. It told me that I had “until 07 July 2010 to contact us with all of the information and evidence documents requested in this letter”. I duly arranged a GP appointment, visited my old uni to collect proof from them, and posted off all the requested documents on the 14th June 2010.

3) Be immediately turned down

Before I’d had time to collect anything that they’d asked for, I received a letter dated 8th June – the day after I’d made my claim. It told me, in bald sentences, that “we cannot pay you ESA from 7th June 2010”, because “you have not paid, or been credited with, enough NI contributions”. The letter made no reference to the previously stated deadline for submission of evidence, nor to the youth rules. So much for their magical system…

4) Appeal

The same day that I posted off my supporting evidence, I also posted an appeal form and, with some much appreciated help from Into The System, an accompanying polite letter, quoting their “Decision Maker’s Manual” at them.

5) Be asked for additional evidence

In response to my appeal form, I received a phone call from a lady working for the “Appeals Team”, who told me that the only missing piece of the jigsaw was a backdated sicknote for the 6 months prior to my claim, and happilly sent me a small handwritten note that confirmed her request.

6) Be patronised by GP

Since my regular GP had retired recently, I had been seeing a hodgepodge of GPs since – usually whichever was offered to me when I made the appointment. On this occasion, the receptionist assured me that “any” GP would be able to deal with my request, so I booked to see a GP that I’d never seen before, and tried to explain my request, showing NiceAppealLady’s note. Unfortunately, he told me that he wouldn’t be able to write a backdated note for me, and instead wrote a note that said, and I quote…

“Was told needed sick note from January for Jobcentre. No evidence of written sicknote. Unable to state whether fit/unfit for work. Has been seen under psychiatric services. Would need an Occupational Health Assessment. Patient wanted writing from January to June 2010”

… which, obviously, I didn’t feel I could send off…

7) Fail to make appointment with psychiatrist

As part of the GP’s objection had been that he hadn’t been seeing me over the period in question (and the GP I HAD been seeing then had retired), it seemed that the only other doctor who might be able to provide evidence was my (ex-)psychiatrist – the one who discharged me and told me I should look for a job. My occupational therapist, who was from the CMHT, made an appointment with her for early September, and promised to come with me. Unfortunately he canceled at the last minute, and I didn’t want to go alone. He promised to rearrange it, but after he discussed it with my psychiatrist, told me that she’d said she needed a request from the DWP before she would write me anything, and so I dutifully rang them and gave them her details.

8) Have decision “reconsidered”

Throughout this process I kept in contact with the Appeals Team, but around the time of the psych appointment that I didn’t attend, they told me that they couldn’t delay any longer, and would have to put together my appeal papers for the tribunal service.

9) Recieve letter from Tribunals Service

After this, I received a letter from the Tribunals Service, asking me to confirm whether I wished an oral hearing, and informing me that my appeal was “unlikely to be heard before 01/04/2011”. I returned the slip to request an oral hearing, and made a really big mistake – I didn’t look for someone to represent me, because I thought I had plenty of time.

10) Chase up DWP

In late November, I discovered my ex-psych hadn’t heard anything from the DWP, so I rang up to check what was happening. I was rather surprised to be told that they “couldn’t do that”, as it would involve “dealing with a third party”.  If this isn’t a catch-22 situation I don’t know what is… both sides are adamant that they can’t do anything unless the other side gets in touch with them first. They did promise to send me a letter requesting the evidence that I could pass on, but this never arrived, surprise surprise.

11) Receive date of tribunal

In early December I received a letter dated November 16th, giving me a date of 21st January for my tribunal. It requests that I send “any further evidence… at least 7 days before the tribunal hearing”. As it stands, I have an appointment to see ex-psychiatrist (to whom I have now been re-referred… so that would make her my ex-ex-psych?) on the 11th January, 10 days before the hearing.

I did see a welfare rights advisor, but she said she’d “never seen a case like this before”, and couldn’t offer much advice except that she’d write my psych a letter. Haven’t heard anything else from her. At the moment, my plan is to turn up at my tribunal next week and ask for it to be adjourned so that I can seek some proper advice, or at the very least someone to represent me. At the moment, I don’t see any other chance of this being more than just a colossal waste of my time and taxpayers’ money. Which is ironic, given that I passed the medical, which is supposed to be the hard part.

It seems to me like the system is so set against the people who claim benefits, almost as if it’s already written me off, and doesn’t care that I did what the government of the time was encouraging young people to do – because I spent four years of my life trying to get a qualification, I’m not entitled to any help to get back on my feet. It’s the student loan that I claimed and didn’t spend that disqualified me from income related benefit – I have a certain number of savings, and a larger amount of “debt” that’s financially nonsensical for me to pay off.

The cost of living has now ground my savings down to well below the limit for income-based ESA, so I spent a month putting the right form together (50 pages of it), with 3 months of bank statements, like the lady at the Jobcentre told me to, and sent the entire epic off last month… haven’t heard anything. I’m dreading ringing up to enquire about that, as I expect it will have been “lost in the post”.

Frankly, the only way I’d be able to get any money out of this whole sham of a “benefit system”, would be if I were well enough to be working, in which case I wouldn’t be claiming it.

And then I hear all the political rhetoric about getting people off ESA and DLA, I see newspaper articles that demonise me as a lazy scrounger, and have to try hard not to worry about the future, whether I might have to go back to living with my parents (which would be a disaster for my mental health), whether I should have bothered trying to claim anything in the first place.

Frankly, any stage of this process could have pushed me into a crisis, and I have no doubt that there are people out there being made more unwell by this.

I could have been a scientist, a banker, a teacher, any number of  professional, respectable, careers. Perhaps I still could, with the right help. But I have an illness, through no fault of my own, so I’m somehow consigned to the dustbin at the ripe old age of 24, and I have to fight just for money to keep a roof over my head and food in my fridge. And that’s without even considering the fight we need to go through to get any help from the NHS other than a packet of pills and a lengthy waiting list.

This may be the longest post I’ve written on this blog – it’s certainly longer than some of my assignments at uni. But I mean all 1500 words of it. And even if noone ever reads it, even if I lose my appeal, I do feel better for having written it.

should have…

should have…

I do this to myself, night after night, sitting immobile as the clock ticks on and the thoughts get darker. Not even the urge to go to the toilet gets me off this chair. I just sit here, rocking now from the pain in my bladder and the pain in my head. Sharp thoughts, slicing through my feelings like a knife doesn’t slice through my skin.

Leaving me with just a mild graze on my arm and an even bigger feeling of incompetence.

I shouldn’t put pressure on myself, shouldn’t use these should words… but if I don’t put pressure on myself, then these long dark nights turn into cold dawns, with me still sat here.

To be fair, I was asked if I wanted one last med review appointment made before I was discharged this week – but psychiatrists are poop, and the medication won’t help, so I said no. I’m not ill, the venlefaxine is warding off the depression, I just need to get myself sorted out.

Which is also why I shouldn’t quote this, no matter how appropriate the lyrics feel.

All day,
Staring at the ceiling making friends with shadows on my wall

All night,
I’m hearing voices telling me that I should get some sleep
Because tomorrow might be good for something

Hold on
I’m feeling like I’m headed for a breakdown
I don’t know why

Unwell, Matchbox Twenty

The time it took to write this post? One hour. It is now half past 4 in the morning, and still counting.

I have a discharge meeting with my care-co and my worker from the YP-place this week, hopefully I’ll be able to sound positive at it, I don’t like talking about how down I feel in case it seems like a reaction to having to be discharged.

On that subject – I have to be discharged because I’m not the CMHT’s typical sort of client, and it was only ever going to be short term work for three months (this said six months ago… so I’ve had my fair share and then some). Psychiatrist has already discharged me, so I’ll be free of specialist MH services soon. I have been referred to see a psychologist though, for real this time (long story, might try and post it properly).

However, care-co has apparently encouraged YP worker to rerefer me if the risk to myself (haha) increases, which is a bit of a change from my old psych’s viewpoint of needing a Severe and Enduring mental illness before referring.

Dithering over whether to obey the thoughts again or not – the last time seems to be healing with no scar. Hoping that if I do, it might stop everything breaking down around me. I’m a bit scared, I’d prefer to have enough faith to stand firm against the onslaught, but when I tried talking about it, things got worse – and big words like “delusional thoughts” got waved around, which didn’t help. Even reading back what I’ve written makes it sound overly dramatic.

I’ll finish off with a quote I overheard in the (very studenty) supermarket…

I asked my mother to buy me a laptop when she came down last weekend, but she bought me teabags instead