dominocat panics!

November 29, 2007

o hai

It started out with me being mentally knackered from doing all the gallavanting around for my CBT. It evolved into a bit of worry whether I was getting SAD again, and eventually mutated into Worrying About Other Things. It meant that I didn't update the blog for over four months. Oops...

Several things have prompted me to write again, one of which is the fact that I got a letter from the Benefits Agency yesterday asking me to "telephone to make an appointment for a medical". They took their time. Two things amuse me about the letter. First, it tells me that I must "contact them within two days of receipt of this letter". It wasn't sent registered post or anything, so how on earth could they know when I received it? I had visions of it spontaneously combusting like the Top Secret messages on Mission Impossible. Second, the whole "telephone to make an appointment" thing. When I filled in form IB50, I clearly stated I have problems using the telephone. I suppose they expect me to ask someone else, but it's just a teensy niggle that something I've said about my health problems has been ignored. Oh, and they STILL have me down as a "Miss". I've never been a Miss in all the time I've claimed IB...

These are little things though, and I know I'm being picky, but this letter has put me on my guard because of last time. I feel more anxious at the thought of attending this medical than I do walking into the village and looking round the shops. Of course, the anxiety was bound to happen, but I tried to convince myself that I could put on an act, and show them what I was like on a bad day. The ironic thing is, that it would be better if my anxiety was high during the medical, and it makes me hate the whole thing even more.

Getting there is still going to mean Mr D taking time off work, and therein lies yet another obstacle. I mentioned ages ago about "worries with money", well, things came to a head a couple of months ago, and Mr D had to get another job. It was only a temporary contract, so obviously he was looking around at the same time. He was offered a permanent position recently - and starts on Monday. Now, I'm certain that if push comes to shove, his employers will let him have the time off, but it still doesn't look good.

I telephoned the number on the letter yesterday afternoon. I picked up the phone without thinking about it, and just dialled. The chap I spoke to was very pleasant, and obviously in a call centre. I told him I'd had the letter, and he asked me when would be a good time for me to attend.

"Well" I said, "that's the problem."

I explained about Mr D's new job, and how getting time off might be an issue, and that I couldn't attend without him. The man offered me a cancellation today, which was impossible - Mr D couldn't even give his employers a day's notice, and it would be unpaid leave. I turned it down, along with another one for the beginning of next week. The man explained that he was only able to offer two appointment choices, and while my head was spinning trying to work out what to do, he said, "tell you what, I can put you down for December 14th in the circumstances". So, December 14th it is. Mr D will have to take half a day's holiday, but at least he's able to let his employers know well in advance.

Of course, my other big worry about this is who will be the examining medical practitioner. I asked the chap on the phone, and he said that all I could do was ring the place where the medicals are held nearer the time. What if it's that same doctor? Do I have the right to refuse to be examined without it affecting my benefits? I've been working on something to say just in case - along the lines of "I do not want to be examined by a doctor who has obviously no experience with mental health issues, and no idea what medical problem he is assessing". I don't know. If it comes to that, I'll probably gabble on incoherently and get upset. It may not come to that, though, and I have to keep my thoughts rational - at least, until nearer the time - I can be as anxious as I like on the day...

PS comments are off - I was being spammed to death, so email me if you have any burning thoughts.

Posted by domino at 6:49 PM | Comments (0)

July 24, 2007

Coming Around Again

Before I went to Woolfest, I received form IB50 from the Benefits Agency. The usual claptrap about wanting "more information" about my medical condition - the same form that I received 18 months ago which led to the Great IB Debacle. O Joy.

It didn't have to be returned until the 12th of July, so I decided (sensibly) to leave it until I returned. Frankly, I had more important things to think about - like my recovery and getting to Woolfest. The form has since been filled in and was posted in time, but it raises some interesting questions.

18 months ago, despite being virtually housebound by agoraphobia and panic disorder, my IB claim was turned down. The doctor who performed my Personal Capability Assessment (PCA) massaged my answers to fit his criteria, and in the end it looked as though there was nothing wrong with me. This time, I am a million times better than I was, yet still not well enough to get to the Job Centre to sign on by myself. I need more time to continue with my CBT, to build up my levels of independence to a point where I can rejoin the real world properly.

You see my quandary. Not well enough to sign on, but technically not unwell enough to claim IB. I am in limbo, and my choices are limited. If I tell the truth - that I can get out and about to limited places like the local shop, I'll fail and be denied IB. Alternatively, I could make out that I'm no better, and even though I've made progress with CBT, I could say I still don't go anywhere on my own. In other words, I could lie.

I've decided to write a blog entry about it to highlight just how screwed the system is. Instead of focusing on my recovery and being positive, I'm put in a situation where I'm worrying about whether my benefit will be stopped, and focusing on the negative to make sure that doesn't happen. In other words, going against everything that the CBT has taught me. Anyone who has filled in these disability benefits forms knows how soul destroying it can be. Telling the Benefits Agency all the negative stuff. It compounds it, drives home how much you can't do. Everyone who knows me knows that I'm trying my damnedest to get past the agoraphobia. They know how much I hate it, how much I'm fighting it. How much I'm trying my damndest to stay positive. However, I still have problems. Going most places leaves me mentally exhausted. I have to push myself every step of the way. I still can't answer the telephone if I don't know the number, and I still don't answer the door. I do try to keep a positive mindset, and part of the CBT focused on how negative I can be, and helped me address that. Now I'm being made to fly in the face of my therapy to get a bit of money to live on.

I have kept my paperwork from the IB Debacle, and my one comfort is that I know exactly what they'll be looking for. However, it still makes me uncomfortable, in spite of me saying 18 months ago "I don't care if I have to lie, I don't want to ever go through an appeal ever again"

Posted by domino at 3:31 PM | Comments (8)

October 2, 2006

Food for Thought

On October 10th, it's World Mental Health Day.

I only found out about this last week, although the World Federation for Mental Health says they've been doing it since 1992. I can't help feeling bemused that "Breast Cancer Awareness" gets a whole month of promotion, and a hell of a lot of it too - while mental health issues which (at a guess) affect a hell of a lot more people only gets one day, and not very much promotion unless you're looking for it.

When I heard about it, I did a bit of a search to see what I could write up here to promote it. The Mental Health Foundation have a campaign called "Make a Meal of it" - the idea being that we get together with friends and family for a meal. I was incredibly cynical about this - people with social phobias are going to love that idea, and the Foundation's own research in 2001 found that one in three people felt that friendships had become strained or they had lost contact altogether. Rebuilding those bridges takes time and a hell of a lot of effort - something many people with mental health issues would feel to be overwhelming.

Eventually I came to the conclusion that it wasn't these people that the MHF are targetting. Maybe they're going after the people who sometimes go to their GP for a sicknote for "stress", or claim they have depression because they're feeling a bit down after a breakup or redundancy. I guess for many people, these simple ideas could work, but I'm not sure how this campaign is going to highlight awareness of mental health issues in a scopic way.

I want to take part - but don't like this social eating idea. Then I remembered - I'm taking part in a knitted "teddy bear's picnic" for National Knitting Week. I'm doing the food...

Posted by domino at 3:22 PM | Comments (5)

October 1, 2006

oh nurse...

I didn't always want to be a nurse. When I left school in the mid 1980's with no qualifications, I had no idea what I wanted to do for a living, but my interests were firmly in the arts - drawing and writing. "No-one in Real Life does that, though" I thought. I remember going to the careers office aged 16, and telling them I wanted to be a window dresser in a department store.

It took me til I was 20, working in various shops and going nowhere near the window displays, before a chance opportunity saw me change direction completely. I started working in the Occupational Therapy department of the hospital, in Stroke Rehab. This was on a government scheme, and at a time when retail jobs were few and far between, I thought I had nothing to lose.

I loved it, and was fascinated by the myriad of ways in which a stroke can affect someone. I discovered a thirst for learning, far removed from my school days when I quickly got bored, and was told I'd never amount to anything. At the end of the year, there was no budget for an OT Helper, so I decided to go to college and try doing some O levels while I figured out what to do next. I didn't think I had the brains to go to university to do OT, and the Head OT in the department had mentioned that there weren't many jobs about anyway. I loved working in the hospital, I loved helping people, so I made a decision. I was going to train to be a nurse.

A year later, I had five O level passes, a student handbook and application form for nurse training. The process was not a quick one, so bearing this in mind, I started another government training scheme. (I tried going down the route of being an auxilliary nurse on the nurse bank, but there were no vacancies at the time). This time, I ended up on the Day Surgery Unit. The Sister and Charge Nurse were both fantastic - knew I wanted to do my training, and tried their level best to make sure I had both a good grounding in basic nursing skills, and a wide variety of experiences. It is something I shall always be grateful for.

I eventually started nurse training in early 1994, under the new Project 2000 scheme. I learned because I wasn't afraid to ask, and because I already had that groundwork, I really think the ward staff appreciated my previous experience, and not having to teach me the basics.

In June 1995, disaster struck. Two weeks before an important exam (CFP, if you're interested), my beloved Grandma died. I was devastated. She had more or less raised me as a child, and we were incredibly close. I sunk into a deep depression and contemplated suicide. I started having panic attacks (although I didn't know what they were) and I stopped caring about myself or what happened to me. It happened during a placement on children's ward, and I guess in that respect I was lucky - at least I wasn't looking after old ladies...

Back in college a week or so later, my heart sank when I looked at the timetable - Wednesday morning, "last offices and bereavement". This certainly was a case of bad timing, and I asked the tutor if I could sit out. She said no. The college was well aware of the situation. I'd sat in with my personal tutor a few times, in floods of tears, trying to explain how important Grandma had been. Now the college ignored that. I sobbed silently through the lecture, and eventually walked out, unable to listen to any more.

The following week, I was to sit the exam. I blundered through it, was referred, resat it the week after with similar results. I appealed to the university, and after hearing my heart wrenching plea, they said I could take it again. Three days later.

I was in no fit state to sit exams, and inevitably, I failed again. My nursing career was over. I found out several months later that I could have taken six months out and joined the intake behind ours, but this was never suggested to me. In all, the support from the so-called "caring profession" was frankly shit.

In the coming months and years, I found myself frequently regretting what had happened. As time went on, I became interested in new things and considered new careers. I still wondered one day whether I would go back. Later, when people asked, I said no - I wouldn't go back partly because of my health problems, and partly because my interests have moved.

I still maintain an interest in the medical profession, being a fan of Tom Reynolds, Dr Crippen and Mental Nurse, but when I read this post by Dr Crippen about an email from a student nurse, I felt glad that (even though traumatsing) I'd got out early.

Now, if I'm asked if I'd go back into nursing, I'll refer them to that post, and say "not on your nelly".

Posted by domino at 7:36 AM | Comments (0)

September 29, 2006

Mental Health Services failing...

The Healthcare Commission have released a review today of mental health services in England. It comes as no surprise that they've found something like half the clients/patients are getting a "sub-standard" service. It seems to me that this is nothing new. Mental Health charities often release reports that highlight the poor deal that people with mental health problems get. Waiting lists to see a clinical psychologist are horrendously long, and from what I can see, the service is often overworked and under resourced.

This is just the tip of the iceberg if you read the BBC's "Have Your Say" board on the subject. Some of the comments about poor service are downright scary. Read the corresponding news article here.

Of course more funds are desperately needed, but I shall refrain from commenting on the abysmal way in which I think NHS funding is being used...

Mental Nurse has also written about this from a staff perspective.

Posted by domino at 1:11 PM | Comments (1)

September 27, 2006

Stigma

Last night, there was a programme on BBC2 (second in a series of two) in which Stephen Fry talks candidly about his life with Bipolar Disorder (manic depression). It was a frank and moving account, which looked at many aspects of this complex illness.

He spoke to people - both famous and members of the public - about their experiences, and for his own experience, added a very 'real life' persona to the one of creative genius that is so often portrayed in the media. He spoke to a couple whose daughter had taken her own life because she couldn't deal with her Bipolar. They thanked him for making the programme, and said that hopefully, it would help people understand. Mr Fry said that's why he was doing it - because the stigma of mental illness was incredible and unnecessary. I can't remember exactly what he said, but that was the gist of it.

On the BBC website, there is a short interview with him, that asks the same question - why do the programme. Mr Fry responds:

"I'm in a rare and privileged position of being able to help address the whole business of stigma, and why it is that the rest of society finds it so easy to wrinkle their noses, cross over, or block their ears when confronted with an illness of the mind and of the mood - especially when we reach out with such sympathy towards diseases of the liver or other organs that don't affect who we are and how we feel in quite such devastating complexity."

In those few eloquent words, Stephen Fry has captured the essence of why I write my blog. Aside from the rare and privileged part. The stigma of mental illness is something that really bothers me. I've lost count how many people say to me "but you don't look mad.." Same with Stephen Fry. People see a successful writer and performer, a Cambridge graduate and Perrier Prize winner. I know I do.

Posted by domino at 9:01 AM | Comments (1)

September 7, 2006

Books as Therapy, part 2

Borders is considerably bigger than Waterstones. It's in a retail park, and we chose it because they are open in the evenings. Yesterday, Mr D and I planned to go there and continue the book buying extravaganza that is my therapy. Even before I left the house, I was planning. Waterstones was more of a spur of the moment thing, so I didn't have time to think about it too much. This time, my mind went through everything - from visualising the layout of the store to deciding what type of book to get.

Downstairs in Borders, as well as a gazillion books, they have an entire corner of the store devoted to magazines, and a Paperchase franchise. Upstairs, there's a large Starbucks and a generous section devoted to DVD's. Upstairs is also where the craft books are, and as I'd already decided that I needed a book on crochet (now that I've finally gotten the hang of it) that's where we headed. Of course, Mr D has no interest in crochet or knitting, so he wandered around the DVD section and left me to it.

Crafting books seem to fall into two distinct categories. Ones for absolute beginners that walk you through the basics in baby steps then give you incredibly simple projects to do, or ones which have complex advanced patterns, of which only a few are really nice. The thing about buying crafting books is that you need to bear in mind that the fashionable stuff soon becomes dated. You just need to look at some of the pattern books from the 1980's to see my point...

"Crafters Corner" has a row of padded stools for people to sit on, which is visible as you go up the stairs. It's nice to be able to sit there with a few books and leaf through them, but I noticed that someone was already sitting there, so mentally decided not to join her. I ended up sitting on the floor in the other corner, which is something I do when there are no seats. Presently, the lady from the stools leaned over to put a book back. I muttered "sorry" as you do when you may be in someone's way, and leaned back for her to have more room. She thanked me, and chose a couple of books - crochet books. I smiled. Somehow there was this unspoken craft-person thing between us, and without thinking I said, "This one's really good" and held up the book I was looking through, Essential Crochet by Erika Knight. Suddenly, that unspoken craft-person link became spoken, and we were talking about books and how hard it is to find good quality yarn. I even told her about a couple of places that I source my yarn locally, which she seemed pleased with.

Maybe it was because I was sitting on the floor, maybe it was because it was a subject I love, I don't know. Maybe it was because I was there to push myself, and this was part of it. My mindset was different, I wasn't thinking automatically "fuck off and leave me alone", I was thinking "I have to do this. I need to communicate. I will communicate.

Buying the book was a little different. I'd gone to find Mr D, and contemplated out loud going downstairs to pay by myself. J's comment about going "just a bit outside my comfort zone" came into my head, and I decided this was the way to do it. I hovered, putting it off, then thought, "sod it, I need to do this now" told Mr D I was off, and headed downstairs.

Towards the bottom of the stairs, I looked over towards the till area. There was someone waiting, but it wasn't busy. I headed over, pausing to take a different route when my chosen one was blocked (I didn't want to be in a confrontation situation by having to say "excuse me", which doesn't make much sense considering the conversation I'd had upstairs). I got to the till and waited. It was only when the girl beckoned me over and I smiled and said "hello" that I realised I'd been clenching my jaw.

The actual process of paying was very similar to Waterstones. An almost 'self service' system of putting my own debit card in the reader, and following the instructions on the lcd display - the only communication from the sales assistant was a "hello" and "would you like your receipt in the bag?". I'm thinking I need to pay cash next time, just to make them do some work for my therapy...

I looked round, and saw that Mr D had come downstairs, but had hovered on the bottom step so I could see him. It made me feel better, somehow I felt that going upstairs to find him again was a bit more than I wanted to do. At this point, I felt incredibly tired, but also felt like I'd achieved something.

Last night, I went to bed early, and took my crochet book up with me. Although I'd looked through it in the shop, somehow it was like I was looking at it for the first time. I was seeing the pages again, but this time I was taking it in...

Posted by domino at 8:29 AM | Comments (1)

September 3, 2006

Books as Therapy

Not long after my appointment on Thursday, I found myself standing outside Waterstones wondering what the hell I was doing.

I walked in, my anxiety a little higher than usual, knowing I was going to face something that usually made me more anxious. The first thing I did was look for a book I knew I wanted - Tom Reynolds' brilliant "Blood Sweat and Tea". I had been waiting to get it from Amazon, (with something else to qualify for free shipping) but I needed to buy a book for my therapy, and this was going to be it. Tom might be amused to learn that he's had a little bit of community psychiatric input, there! I found it (in amongst the biographies, not on the 3 for 2 tables as it should be) and asked Mr D if there was anything he wanted so we could take advantage of the 3 for 2 offer. As we both looked around, I found myself inadvertantly looking at the till area. I was already gauging what was going on there. I realised that I'd also been looking around to see how busy it was and whether there was anyone or anything that was going to make my anxiety worse. I was so acutely aware of it, that I suddenly smiled to myself. Sometimes, this is like looking in from the outside...

Mr D chose a book (I can't even remember what) and I was pleased to see the classics were included in the 3 for 2 offer, so I picked up HG Wells' "The Time Machine". Our local Waterstones isn't very wide, so I instructed Mr D to stand where he was, which was about 18 feet away from the till on the opposite side of the store. He was close enough, but I was doing this on my own. At the till, a young mum with a pushchair was being served (why do mums think that pushchairs don't take upany room, and park their 'wheels' horizontally?) and had a small girl in tow, who was pirouetting round the pole that holds the "please queue here" sign. In a way, I was pleased someone else was being served - it meant that I could do the whole queueing part of this exercise. My focus was on the mum and her kids - I didn't want to trip the little girl up, nor did I want to be run over by the pushchair. Another assistant beckoned me over to the till, and I went through the motions. Put my books down, got out my purse, watched her scan them and say "that's £14.98, please". Handed her my debit card, and obeyed the instruction to put it in the card reader myself. (As an aside here, I wish shops would make their sodding minds up - either take the card from the customer, or all of them become almost self service. It drives me nuts when you hold out your card and they give you this "oh, no - you do it" thing. What happened to customer service?) To be fair on the girl, she was pleasant and smiling, asked if I wanted the receipt in the bag, which I did, and she waited for me to put my purse away, then handed me the bag with a smile.

There. That was easy. Maybe too easy? Maybe I should have done this on Saturday when there's more likely to be a queue to contend with, and more people. But, as they say, I have to take baby steps. Two things have come to mind while writing this - firstly, I didn't get flustered when she waited for me to put my purse away. Usually, I can't organise my bag so that my purse slips down to the bottom, I'll just stuff it in my pocket or take my goods and sort my purse out later. Secondly, I'm a sod for saving the environment, and always have a roll-up bag with me. For the first time in ages, it never occurred to me to say, "I don't need a bag, thanks" - and I feel a tad ashamed.

However, Part One of my 'homework' is done. Because of the fact that Mr D works during the day and there's no daytime opportunity to do this again before my next appointment with J, we have decided to wander into Borders book store during the week. It is at a large retail park nearby, and open late in the evenings.

Now all I have to do is think of some more books I want...

Posted by domino at 7:17 PM | Comments (0)

September 2, 2006

Dealing With It

It was only a matter of time before J was going to ask me to do a practical CBT exercise.

For a few weeks, we've been dissecting individual places and events, what causes the anxiety, what makes it worse, what helps (safety behaviour) and where I could be in that place to ride out the panic rather than running away. I'd always visualise myself in these places with the thoughts and feelings I usually had. Going into detail has been difficult, partly because I don't really think about it at the time, (there's a lot of times I've had a panic attack and not even remembered much of what went on) and partly because it's hard to admit every little detail. It's validating the fear, making it more real.

So far, J and I have come up with a list of places with scores between 0 (completely calm) and 100 (full blown panic). Most of these places are shops, and although I said "cinema" and "going out for a drink" I don't think they count because they happen so infrequently. The last time I went to the cinema was when "Harry Potter and the Goblet of Fire" was out... We picked a choice place, somewhere halfway along the list so it wasn't too easy and wasn't going to be the exotic pet store where the tarantulas live. 'Scuse me..

*throws up a bit*

I hate spiders.. Anyway, the place we chose was Waterstones. I'd already figured that my anxiety is less in there because of my love of books, and if I get anxious I know there is usually a seat nearby where I can flick through a knitting or photography book to distract myself. I guess there is the possibility that this knowledge means that my anxiety is lessened before I even get there. Plus there's the benefit of a bookshop actually selling lots of things that I really want, rather than popping into Sainsbury's for a pint of milk.

J asked me what part of the store would make me more anxious. This was easy - either standing by the front door, or waiting in a queue at the till. We looked in more detail at what I'm like waiting at the till to be served. He asked me about my behaviour - what's going through my mind, what am I doing, where am I looking - that sort of thing. At first, I wasn't sure - some things I do automatically, and some things I'm sure most people do, like check their purse, keep an eye on the till to see if it's their turn yet. As we talked, I realised I do as much preparation as possible. Not only do I get my purse out, I get my debit card out (or cash, depending on how I'm paying) and I have a tendency to watch the sales person. I try and figure out what mood they're in - are they chatty or efficient? Are they trying to get customers to fill in stuff or have a catalogue or store card? These things are important, because in my head I have everything in order. I know what will happen, and if I get to the till and they say something that throws me, it really increases the anxiety.

J and I then discussed my safety behaviour. What do I do to take my mind off the anxiety? There wasn't a huge amount to say here - if my anxiety is high, I often tell myself not to be so silly, and that I've done this a thousand times. I try to focus on the task at hand, and not get distracted by anything or anyone. Maybe this is partly why I avoid eye contact with people. I don't want to end up enganging in some (verbal or nonverbal) diatribe which ultimately would give me too much to think about and deal with at that moment. There's also the fact that Mr D is rarely too far away. He's convinced he doesn't do much - but just knowing he's around is a huge comfort. My biggest dread is having a panic attack when I'm alone.

What J picked up on is that I'm very negative about the whole thing. I hate my anxiety. I remember clearly what it was like to be 'normal' me, and this makes me feel like I die a little bit inside every time I do something ordinary and my stupid disease means that I freak out. The negative rebuke is now automatic, and J suggested that I need to approach it a different way. I can hate my anxiety as much as I want, but I need to accept that right now, it's okay to feel this way. Hence my new motto:

   "I'm anxious, and I'm dealing with it."

It looks like some new-age motivational speak, but it is right. I'm accepting the anxiety, rather than fighting it (I have a habit of saying "I'm fine" which Mr D knows means I am anxious) and I am reminding myself that I am doing something positive about it. I need to practice it, though. I guess the way it's worded is also helpful if the "I'm so stupid" thoughts come into my head. I can say "hey, fucko, back off - I'm dealing with it..."

What J said next made my heart race. "D'you think you could do a practical exercise?"

What J wanted me to do was this. Go to the bookshop and buy a book. Gradually drop my safety behaviours, and get Mr D to back away. This should be done over several times until I go into the shop and buy a book myself.

"When do you think you can start this?" J asked. "How about this afternoon?" I ventured. I always go into town after an appointment to 'treat' myself. It's an unspoken reward for dealing with my shit. This time, I could go and buy a book instead of a cream cake.

This was on Thursday. I have written about my experiences, and shall publish them tomorrow...

Posted by domino at 9:10 AM | Comments (0)

August 26, 2006

Let's hope Mr Hutton doesn't read this...

don't get any ideas, Mr Secretary of State for Work and Pensions...

Granted, this is based in the US, and the person in question told her disability company about her blog, but it's still something to think about. I'm quite proud of this blog, and the fact that I did a lot of the coding myself, and it wouldn't take a genius to work out that it's neither updated with great frequency or full of comments that could make me look like a fake, but you never know. Just look what That Doctor thought in December...

Good luck to "Madrigal of Agony". It's shit enough having a disability without having to prove it all the time...

Posted by domino at 5:42 PM | Comments (0)

Belay that worry, ensign

My two main fears about how the CBT is going have been lifted.

Last Thursday, I asked J about the dihydrocodeine and whether the knowledge of how my panic attack disorder and subsequent agoraphobia started would have changed the direction in which my treatment was going. I didn't explain it too well (thanks to only 2 hours sleep the previous night) and he thought I meant "would he have had reservations about treating someone who got addicted to opiate analgesics?" Eventually, we both got our heads round what I was trying to say, and he told me that regardless of how it all started, the principle of the CBT is the same. *phew*

I then said I was worried about how long we had left for appointments. J reassured me that I wouldn't be "chucked out the door" half way to getting better, and that if needs be, I can be referred to his supervisor, D, who did my initial assessment a year ago. He also said that he could offer me weekly appointments instead of fortnightly, which I have accepted.

I feel a bit better about it all, although I still feel like I'm doing one of those orienteering things where you have to fall back into someone else's arms and trust that they'll be there to hold you...

Posted by domino at 7:27 AM | Comments (0)

August 16, 2006

CBT Thoughts Part 3

Since my last appointment my head has been swimming with thoughts. Not necessarily about me, but about this "whole CBT thing". It's hard to write them down because there's that telltale little voice yelling "you're giving up!". I'm not, though. Just voicing my thoughts.

There are a few things bothering me. Firstly, at my last appointment, my back was really sore, and I was hobbling a bit. J mentioned it, and I said that my old back injury flared up occasionally, but it wasn't too bad. At the end, as I was getting up to leave, something was said that made me say something about "stupid bloody back and stupid bloody dihydrocideine addiction". J stopped, and looked taken aback? surprised? one of them. I said, "you didn't know about that?" and when he looked puzzled, I explained that it was coming off the dihydrocodeine that started the panic attacks. J said, "We can talk about that next time".

Next time is tomorrow. J has had holidays, so it means there's been a four week gap between appointments rather than two. In the meantime, of course, my mind has been working overtime over what this means. Part of me is frustrated and annoyed that this has never come up. Isn't it in my notes? Maybe it's not relevant, but if sudden dihydrocodeine withdrawal started all this, then surely it is relevant? Withdrawing from massive amounts of an opiate drug as suddenly as I did left me feeling raw - my senses and emotions were heightened to levels I'd never experienced, and I just wanted to hide until it all went away. I developed coping techniques (actually avoidance techniques) to try and stem the horrible feelings, and gradually I learned to cope with them. That's left me where I am today - panicky and scared when I go out, those raw emotions bubble to the surface and I just want to hide again. That's why I think it's so relevant.

Secondly, I've been thinking about the fact that J is a psych student, and his placement at my hospital finishes sometime in September. This means that at worst, I have one or maybe two appointments after Thursday, and at best, three. I'm terrified that I'm going to be 'discharged' when I still need help. Okay, so this CBT can give me the foundations to work on, but there's been lots of times lately where I've thought "hang on, J said I should do x, what happens if y happens?" Right now, I have the comfort that I will see him tomorrow and I can ask him. However, the fact remains that once those few precious appointments are gone, I'm on my own.

I guess the upshot is, I'm terrified of failure. Again.

Posted by domino at 7:46 AM | Comments (1)

July 31, 2006

Out on the Town

Our town centre is being 'done up'. The council are putting expensive pavers down, and making the whole area pedestrianised. Unfortunately, they are cordoning off massive chunks of pavement and road while they do it. It will be nicer when they've done, but in the meantime it's a nightmare navigating - both mentally and physically. The gaps they leave between the shops and the barriers are literally only wide enough for two people standing very together, side by side. Someone with a wheelchair, or a parent with a buggy would struggle. It's no easier for the walking wounded - ie people with walking sticks (like me at the moment - my back went into spasm a fortnight ago) or indeed anyone with mobility problems. Although the council have had to (by law) tarmac the bit where the old pavement ends and the new one begins, it is so uneven that only hill walkers and mountain goats could confidently say they'd never struggled.

Add this to the fact that our town centre gets very busy with shoppers on Saturdays, all of whom have a wandering around agenda that involves aimlessly walking diagonally and changing direction at the drop of a spitwad (they don't wear hats where I live), and shopping is a nightmare.

Of course, J would say this was an opportunity. Maybe it is, but somehow I want these opportunities to be on my terms. If I'm going to confront* someone in the street who I can't get past, I at least need to know that I could go the long way round if I wanted. I know there are going to be occasions where I have no choice, but I don't want the idea of going into town to be my worst nightmare, thank you. At this stage, I am only dipping my toe in the water, I don't want to be pushed in.

One thing J has said to me is that my avoidance tactics (counting in japanese, reading labels on tins) are not helping. When he said this to me, I almost felt as though I'd been slapped. I don't blame J for that, as I keep reinforcing, he is only there to challenge my thought processes, but it's still hard when you think that you've found something that helps, and you're told that "actually, it's not helping.." I think this could be something to do with my sensitive nature. I am, however, much more aware of how I act when I'm out and about.

I need to be aware of the things around me, but when I'm faced with something that raises the anxiety levels, my instinct is to leave, or hide. J says I need to face the things that could make me panic. On Saturday, we detoured through the shopping centre which was wider, but still busy. Suddenly, my guard was up - a young man was running towards us. My normal reaction to this would be to look down, move totally out of the way if possible, while getting more and more tense. Yesterday, I thought of what J said. Confront it. So, I kept looking at him. I felt a bit spacy**, but not too bad. (In hindsight, I'm wondering what else was keeping my mind off the anxiety). Then I started wondering. What if the trigger was a parent with a fractious child? I'm sure they wouldn't take too kindly to some stranger staring at them. How exactly do I confront that sort of situation? As always, notes are being made for my next appointment with J...

* 'confront' doesn't necessarily mean an argument - more a situation where I'm forced into a situation where I have to communicate with someone, eg, that thing where you're trying to get past someone and can't because they're DOING A SODDING DANCE and can't make their minds up which way to go.

** I don't remember hyperventilating or anything, it just felt strange and disjointed watching this young man running.

Posted by domino at 8:17 AM | Comments (0)

July 24, 2006

CBT thoughts part 2

On Thursday, I saw J again, and instead of trying to tell him what I was thinking about our last meeting, I printed out the blog entry that I did last week. It made the most sense, rather than struggling with my words, the wrong word coming out and J taking it at face value. Sometimes, my mouth comes out with some utter shite rather than what I'm trying to say. My brain moves too fast for me, I think.

The crux of it is that rather than me seeking reinforcement - even subconsciously - it's a case of other people giving me that reinforcement. So, if I feel anxious, it's Mr D's instinct to comfort me, but in a sense he's perpetuating the problem. Coupled with the fact that instead of staying and dealing with the problem, I use avoidance tactics, it all adds up to why I'm just coping with my illness - not getting better.

This week, J and I looked at all the individual places that make me anxious, however at first he wasn't too impressed with my response of "everywhere"! For each place, we gave it a score out of 100, with zero being virtually asleep and 100 being a full blown panic attack. I looked at my list, which was mostly shops and very local places and said, "God, I have a sad little life..." J suggested that I could hang on to that thought with a view to making my life more interesting when I get better. He's right. I've lost count of the amount of times I've turned down invitations or longed to go somewhere. At the time, I struggled to think of a particular place or event that I'd like to do, and came out with "shopping in New York" which I guess is a bigger goal than J was aiming for. When I came home and thought about it, there was one thing. My friend B runs a weaving class. My rekindled interest in fibre crafts means that something like the class would be a perfect next step from knitting and handspinning. The thought of attending makes me want to puke, though.

My fear is not being in new places, but having to deal with people. I have visions of making a fool of myself, not being able to speak properly, people thinking I'm stupid. I said to J that you could stick me in the middle of a field and I'd be okay, but put me in a crowd and I'm a goner. It's made me think about just how restricted I'm making my life so that I don't panic - but at least we have something to work towards.

Posted by domino at 9:45 AM | Comments (0)

July 14, 2006

I love my GP

Okay, don't get a nosebleed or anything but yes, I am posting two days in a row. Someone fan me.

I had my monthly GP appointment this morning, and we chatted a bit about the benefits thing, and she told me about another patient (very vaguely to maintain confidentiality, of course) who was going through the same thing. I told her that my worry at the moment is about the new IB reforms, and how claimants are likely to be sent on training courses etc - see two posts down for the sort of thing I said.

Dr H was as always, lovely and supportive. She told me that yes, it was likely I would be caught up in these new proposals, but my best bet was to tell them in very simple language exactly what I can and can't do, and if the worst happens she will be happy to back me up with a letter.

I'm writing this for the benefit of the people who read my blog and (as I mentioned before) have emailed me worrying about the 'what ifs'. I felt better knowing that Dr H is completely on my side and totally understands me. She told me about a patient who had agoraphobia and got caught up in a similar scheme a few years ago. The patient was too ashamed of her condition to say something to the BA, and it resulted in her anxiety levels soaring. People, get a good GP who understands you. Then if you do need to fight the Benefits Agency, you have a damn good weapon.

Posted by domino at 3:21 PM | Comments (2)

July 13, 2006

CBT thoughts

I've been writing this blog entry for three er, four days now. It's not the usual procrastination thing, but a "where the hell am I going with this?" thing. If some of this comes out disjointed, I apologise, because I'm writing down all my thoughts, but don't want to publish everything. Suffice to say, all of this will be discussed with J when I next see him.

This CBT lark is er, interesting. Imagine me saying that in a guarded sort of voice, because although I really want it to work, it's challenging everything I ever thought about me and my health. It's almost like saying the logical and natural behaviour that I've demonstrated over the last five years has been (although logical and natural) misguided. I've taken the path of least resistance to reduce my anxiety levels as quickly as possible (ie by running away) and by trying to keep myself safe, I've perpetuated the problem.

When I kept saying during my benefits appeal that I knew I needed to be in a positive place mentally to do this, I was spot on the mark. To challenge my innermost instincts - ones which have dominated my life for the last five years - is incredibly hard. The therapy is also challenging why I do certain things, and the way I do them. A good example is this blog. Why am I writing it? Is it because I want to give an insight into my experiences (as I've always maintained), and to put my thoughts and feelings into a tangible form, or is it because I need validation, or a platform to say "look at meeeee!" J doesn't make these assumptions, just gets me to think about everything differently. I'm trying to take these comments on board in the spirit in which they are intended - just thoughts thrown out in the air to make me think - but there's that little bit of paranoia in me that says "where did that come from? he must have thought it to say it, so maybe that's what he thinks of me - maybe that's what everyone thinks of me.." But then J has also queried my need to not be judged and my need to know that people like me, purely in the respect of getting me to ask "what does it matter what other people think?"

I suppose I've always been that way. Doesn't everyone have some degree of desire to be loved and appreciated? I believe it's a rare person who can go through life with a steely "don't give a fuck what people think" attitude, someone who's so confident in themselves that they never ask for an opinion. We all have insecurities some are just more prevalent than others. I know my family history has a lot to do with it, and without going into detail, I guess it's become habit that I seek affirmation in what I do.

However, this is not why I write this blog. Okay, it's nice when I get messages from people offering cyber-hugs and support, but to be honest, if I have a bad time I have a small circle of friends online who I know I can always turn to. I don't write a blog that may or may not be read so that some random stranger might feel the urge to write and tell me it's going to be okay.

This entry has gone in a totally different direction to what I originally planned. I was going to write about the thought processes of panic, and what J is suggesting. I guess this whole validation theory has got my back up more than I thought. Oh well, at least I have a topic in mind for my next entry.

Posted by domino at 2:30 PM | Comments (0)

July 5, 2006

They're off again...

Yesterday morning, I caught a snippet of BBC Breakfast News where a guy was talking to a nice lady who'd been on disability benefits then retrained as an AA repair person. I didn't see it all, so I apologise if I've missed something crucial in this. Later, I searched the BBC website for the story. It took a while, but there it was, nestled on the side of the page. Unfortunately, it seems to be a rehash of something that was published a few months ago, and contained little further information, aside from "it's happening". At the time, I wrote about it, and got a couple of emails from people who were scared that they would end up losing benefits because their health meant that they couldn't attend training etc.

Yet again, the government is trying to pidgeonhole people with disabilities who are on benefits. Making everything black and white, accountable, measurable. As I've shown previously, even just looking at people with mental health problems throws out a myriad of symptoms that cannot simply be assessed with yes or no answers. This whole idea of work based training means that there is every chance that someone who can't manage that training because of their health problems will be seen as not even trying. They can't even get doctors who correctly assess benefit eligibility, so who exactly is going to assess the appropriate-ness of a particular training course? How will that assessment be made? Will it count that I've managed to teach myself html, css and the like? Or would I be sent to do some basic mundane thing, because the general impression of mental health clients is that they're stupid? Will it make people's health problems worse, because the Benefits Agency can't possibly be expected to understand all the little nuances of their claimants mental health condiditons, and could technically send someone with OCD to work in a dirty garage?

Plus, would job based training end up being like the vocational training courses of the late 1980's and 1990's? I did one of them - I got paid my unemployment benefit plus £10, and worked full time for a year. I did it to get work experience in the field that I was interested in at the time, but when my colleagues were getting paid three and four times as much for doing exactly the same things, it seemed that many of my VT peers were doing this because "the dole office said so" or as a last ditched attempt to regain some of their employment dignity at a time when jobs were scarce.

We shall see. I have often said that if the government put more money into mental health services, and accepted that healing from past traumas etc takes time, it would be much better. People can wait up to two years to see a clinical psychologist, and getting to see someone you 'gel' with, and learning to trust that person can take a hell of a lot of time In the meantime, my experiences so far of dealing with the Benefits Agency have left me feeling incredibly anxious about all this. I have already proved that it isn't the case that "genuine claimants needn't worry"...

More info on epolitix. (which I can't look at, because I just want to smack Hutton's smirking face, and might break my monitor...)

Posted by domino at 9:23 AM | Comments (0)

April 30, 2006

oh, how we laughed...

I was early for my appointment on Thursday, a combination of determination to tell J how I felt and the usual being over prepared for something. As I sat in the waiting room I looked at the posters on the wall. Among the usual posters for the domestic violence group and the fibromyalgia group were a series of new posters proclaiming "there's no healthwithout mental health - how's yours?" (just peachy, which is why I'm in the psychology department...) I love these 'stating the obvious' type of poster. One said, "there are many things you can do to improve your mental health, try: meeting new people." Other suggestions were "relaxing and making time for yourself" and "developing new hobbies and interests". While I appreciate why they make these things and put them up, I can't help thinking that they're just making blanket and rather vague statements suggesting things that the patient is probably *way* beyond.

J is a very approachable guy, which is why I have been so torn about this. I get the feeling that we are on the same wavelength, and that I can talk to him and be honest and open. That, as any therapist will tell you, is incredibly important. I talked to him about how I felt, even that I'd had difficulty writing down all the anxious stuff - and he sat and listened, then said that it was all understandable and made sense (thank god he doesn't think I'm a flake) and that I could "see how it goes" before deciding. It wouldn't be failure, it would be being honest with myself.

We also talked about the tape - which was sitting on the table mocking me. As soon as I saw it, I'd said something like "oh shitting buggery" before advising J that I was liable to swear a lot. J told me that I was in control, that I could withdraw my consent at any time, or he would stop the tape whenever I asked him. At this stage, I was more worried about how I would feel if I didn't give it a go than anything else, so I consented and he pressed the button.

We talked about stuff, about my panic and how I react to stressful situations. As usual, there's a lot that I promptly forgot once I'd left the room. Towards the end of my appointment, when J had switched the tape off and we were talking about me coming back again he said something like "...and there'll be no more of that".

"No more of what?" I asked, puzzled. "The tape" J said. "You've got the hard part over with."

Somehow, in the midst of my anxiety last time, I'd decided that he would be taping more than one meeting. He only needed to do one...

Posted by domino at 3:16 PM | Comments (1)

April 26, 2006

Ridiculous Thoughts?

Yesterday, I started writing a post about how J, my new counsellor, had asked me to write down all the negative shit that goes through my head when I'm anxious. I thought I'd blog it because it gives another little insight into how my head works right now. As I wrote, I started feeling incredibly crappy, which isn't surprising when things like "I'm useless" "I'm stupid" "why can't I manage this shit?" "I'm going to die" come out.

I have a funny feeling that J is going to go through each one and counter it with logic. The thing is, I do this all the time already. "I'm not stupid, I just have depression and things seem more difficult right now. Give yourself a break, already". "I'm not useless, I do all kinds of things that I take for granted, I should give myself a bit more credit". See? How easy is that? It doesn't help, though. The useless and stupid thoughts are ingrained, I've always had poor self confidence. How can I erase thirty odd years of that?

As I sat there thinking, I wondered whether this is really the right time to be doing this. How can I concentrate on what is probably going to be a difficult road to recovery when I have this benefits thing looming over me? Despite everyone's assurances that I have a damned good case, I still have that nagging doubt that I'll fail the appeal, and the consequences of that are just too hard to even think about. If I continue with my counselling and I fail, it'll be harder to do it next time around. I can't help thinking it would be better to say, "put me back on the waiting list, I'm not ready for this". There's another reason for my negativity and doubt. J is a psychology student. Although he's a fully qualified counsellor, he's seeing clients as a psych student, therefore needs clinical supervision. This means that he has to tape some of our meetings.

I'm not sure how I feel about this. At the time, I said that although I didn't like the idea, I understood that it was necessary for him as part of his 'training'. The only people who will hear my witterings on tape will be him and his supervisor, but when I feel so ridiculously self conscious anyway the thought of being taped makes me want to puke. Unfortunately, if I'm not comfortable with it and can't deal with it, I go back on the waiting list to see someone else. I was 'pulled out' of the waiting list to see J, because it was felt that I was an ideal candidate for him (fools). I guess I need to know that I'd go back to where I was on the list, and not right back at the end.

For this whole therapy thing to succeed, I need to feel comfortable, and I'm not. I hate this - it feels like I'm making excuses, and given that I've gone on and on all this time about how I want to get better, I also feel like a bit of a fraud. I see J again tomorrow morning, and shall talk to him about it.

Posted by domino at 12:37 PM | Comments (3)

March 2, 2006

Gosh, they're quick!

But at least the CAB has stood up and said something about the Incapacity Benefit Reforms proposals.

"People with mental health problems are particularly likely to be wrongly assessed"

What, really??? /sarcasm

In my opinion, we already are. The current PCA assessment works for people who know how to work the system. People with genuine mental health conditions like mine are more likely to be honest, and in my opinion, are more likely to have benefits denied than someone who is committing fraud and knows exactly what the Benefits Agency is looking for. The PCA awards points for malingering, and takes them away if you try to improve your condition.

I also note with interest the comment about assessing doctors being "rude and insensitive" - how about doctors who know nothing about the mental health problem they're supposed to be assessing?

I had already considered writing to mental health charity MIND, and my MP about this, now I have back up.

The full press report can be found here.

Posted by domino at 4:36 PM | Comments (2)

February 28, 2006

confounding

I am the sort of person who thinks obsessively. I say that I tend to "over think" or that I'm an "analytical thinker", because stuff goes round in my head until I'm dizzy. There are lots of people out there who can be puzzled at something that's happened, and then say "oh well" and shrug, because they accept that not everything makes sense. I am not one of those people. The maybes, the whys, the wherefores all spin round in my head like a pink sock in a white wash.

Of course, over the last few weeks, I've done little else but obsess over the details of my IB appeal. From a simple "damn, what was that doctor on?" to a broader "the whole system's fucked" and everywhere in between. In my head, it's been extremely complex, and if my thought processes could be printed out on a flow chart - well, let's just say there isn't a piece of paper big enough.

So, you'd think that writing my statement of appeal would be easy. I've got the facts sorted out, I know I'm right, I'm articulate and intelligent. So, yesterday I sat down with a note pad and the appeal summary bobbins, and started reading. I knew I'd get angry with it, and thought that I'd channel that anger into a well constructed statement that someone with clout was actually going to read.

Then I noticed something. If you remember, the doctor at the medical in December ticked the yes and no boxes, and had to write the reasons for his answers. The first question on the list was the one about whether I could answer the telephone and take a message. He'd said yes, and I couldn't read his writing well enough to decipher his reasons. Yesterday, as I went through the pages once again, I realised what it said.

"answers when phone ring, responsible memory"

In other words the doctor has BLATANTLY LIED on that form. If I could have channelled that anger into a well constructed statement, it would have been fantastic...

Posted by domino at 4:39 PM | Comments (0)

February 23, 2006

That's better

It takes a five minute conversation with the Lovely Solicitor™ to put my mind at rest.

Up til then, I was convinced that if I had to drag myself to a tribunal, kicking, screaming and stoned on valium before promptly puking on their desk, I would do it. LS™ says this isn't necessary. My options for a hearing have been either an oral hearing (the kicking and screaming bit) or a paper hearing, where I basically submit a statement of why I think the decision is wrong. I had this idea of writing a statement anyway, in case I spacked out at the hearing and couldn't get my point across, and I've been busying myself making notes etc. LS™ suggested that an oral hearing might give the appeals panel the grounds to say, "well you made it here, what's the problem?" (or something like that). So, the way forward is a paper hearing.

The bumph I received yesterday asks if I have any further evidence to support my claim. This has always bothered me, because at the moment, apart from Dr H, I'm not seeing anyone. LS™ and Wonderful Legal Secretary™ have suggested that a statement from Mr D will be good - and it makes so much sense - after all, he knows me best and lives with this shit too. I've been given instructions about how it should be written, and what they'll be looking for.

That's this weekend sorted, then...

Posted by domino at 4:46 PM | Comments (1)

February 22, 2006

she knits and she shits

there I was, writing a post about how I've been dying from the most horrible diarrhoea and vomiting bug EVER, when *thunk* the postman drops an A4 manilla envelope through the letter box. It looks like someone thinks I'm a publisher, because it's as big as a book manuscript.

It may as well be a novel - it's the "Life and Times of Dominocat's IB Claim". The Benefits agency have sent me photocopies of every bit of paper pertaining to my claim now, and stuff from when I had a PCA in 2004. Hopefully, the Benefits Agency have sent a copy to my solicitor (that still sounds so cool!) otherwise I'll have to spend a lot of money copying it and sending it on. It makes interesting reading - and answers a few questions that I had. One of these was "which of my health care professionals filled in the form last time?" I thought it was M, I distinctly remember having conversations with her about it. As it turns out, it was Dr H, who filled it in this time too.

It seems they have put my appeal through what they call "reconsideration" where someone looks at the forms again and decides whether they added the points up correctly. I'd already said there was no point in doing this, because I was appealing against the entire medical, and the fact that the doctor didn't even ask me many of the questions on the form - well, you know the story.

The whole thing looks incredibly scary. The size of the document, the legalese, the fact it is scrutinizing me, when all I want to do is hide... I can't help thinking that they make it deliberately scary to put people off. I honestly think that if it wasn't for the fact that I have a solicitor and his wonderful legal secretary giving me encouragement and resassurance, I'd have just puked and given up.

Posted by domino at 4:43 PM | Comments (0)

February 4, 2006

Mental note to self...

Do not start thinking "hmm, I should write something in my blog but nothing's happening", because this is known as Tempting Fate.

Fate happened at around half past three this afternoon, when that big silver car decided to overtake at a place where there was clearly no room, and without checking for oncoming traffic. ie oncoming traffic being us. He swerved back into his lane, but it was too late. I'd seen him.

To be fair, the panic attack wasn't big, and didn't last long - but I still felt stupid and knackered and fed up. Why can't I just yell "stupid bastard!" like everyone else, then get on with life? I hate stupid primeval conditioned responses.

Posted by domino at 4:42 PM | Comments (0)

January 22, 2006

Misconceptions about Agoraphobia

There are a couple of things that bother me about what people think agoraphobia is all about, so I thought I'd address them.

• agoraphobics can't go out at all
not so. Agoraphobia is defined as a "fear of open spaces", but it can also be an excessive type of social anxiety disorder. My fears when I'm out include people, interaction with people, unpredictability of people... Well, people mostly. My biggest fear though is that I will have a panic attack while I am alone, and what will happen. If there is no Safe Person to put their arms around me and tell me I'm okay, and stop me from running away - what happens?
• agoraphobics are depressed, and that's why they don't go out

This is (I think) why I failed to qualify for IB (oh yes, that again). I strongly believe that the doctor thought I was claiming to be unable to work because I had depression, therefore didn't go out. This is COMPLETELY INCORRECT. I have agoraphobia because of the way panic attacks affect me. Sometimes, I get depressed because of this. Depression is not a pre-requisite for agoraphobia.

The WHO Classification of Mental and Behavioural Disorders sums it up quite well.

Posted by domino at 1:06 PM | Comments (0)

January 17, 2006

*yawn*

Well, this should be fun...

"[Incapacity Benefit] reforms would include an element of compulsion"

I think the thing I have to hold on to is that these plans aren't due to go 'live' until about 2008. By then, I'll either have had enough counselling to get me better enough to work, or a new government will be in power. Like Scarlett O'Hara said, "I can't think about that now, I'll think about that tomorrow" Still, it doesn't help. Half way down the page is a link to "Have Your Say" - where the Beeb invites comments from the public. Some of them make interesting (if spine tingling) reading.

Regarding my appeal, I don't want to say a huge amount, other than "friends who are legal secretaries are just utterly wonderful". I now have the appeal forms filled in and sent, with the help of her boss. I can't begin to describe how grateful I am to them both.

One thing that I realised when I was rattling on to anyone who would listen, was that the doctor at the medical didn't ask me one single question about panic attacks. Given that panic attacks are the main reason I don't work (my fear of going outside alone has a lot to do with a fear of having a panic attack on my own), I think this is utterly disgusting. There's a lot wrong with that medical, not just the system and how it works, but the actual doctor and his examination.

Posted by domino at 1:11 PM | Comments (0)

January 6, 2006

Thinking

I've been thinking a bit more about this whole IB decision, and have come to two conclusions.

Firstly, the points system. It looks like I fill a form in, my GP fills a form in, and a doctor examines me, then someone else comes along and awards me points based on those three things. (A blind person, obviously)

Secondly, I'm pretty certain that last time this assessment thing happened, it was M, not my GP who filled in the "health care professional" side of the form. With all due respect to my GP, a psychology counsellor who has spoken to me in depth for an hour every fortnight is going to be more able to accurately describe my day to day living. My GP sees me for 10-15 minutes once a month, and none of our consultation is counselling. Having said that, I was there in her office when she filled in the forms, and I don't recall having any cause to say "hang on a minute, what about..."

I went through the points scoresheet, and answered the questions as honestly as possible. I scored 22. I required 10 to qualify for IB, and they had given me 7.

I swallowed a lot of rage yesterday afternoon and phoned the Benefits Agency. I just couldn't understand how they had got it so wrong. The woman I spoke to was okay, at least she wasn't one of these stereotypical benefits ogres (but then, I wasn't screaming "where's me fookin' giro??" down the phone and threatening to leave my baby on their step, while calming my nerves with 20 regal kingsize). I learned a few interesting things. She told me that "it's a fine line sometimes between getting IB and not" Yes, there's a fine line between 7 points and 22 points. She told me that as I didn't qualify for Income Support, it might be worth claiming Job Seeker's Allowance. Riiigght - so, signing on as unemployed and "fit and available for work" is a good idea... Finally, she suggested that I contact the Disablilty Employment Advisor.

When my employers first terminated my contract about 4 years ago, I was sent to the Disability Employment Advisor. The poor woman struggled to suggest things that would be helpful, and in the end, said "I think your best idea is to see how the counselling goes then come back to me". Although my situation has fluctuated since then -I've felt better and I've felt a damn sight worse - I really don't know what they could tell me. Call me defeatist if you like, but what on earth is the point of going and getting stressed about new places and people for no reason?

The Benefits Agency cut any benefits that they decide you're not entitled to immediately - without warning. This means that I got the letter yesterday, and I stopped getting benefit yesterday. I hope to god we weren't relying on that payment for any direct debit or anything...

If anyone is googling for advice on a similar situation, a friend has advised me to contact DIAL UK. I haven't yet, but will do, and report back...

Posted by domino at 1:13 PM | Comments (0)

Update

I've received a copy of the medical report.

I don't care who knows this. If it helps someone else, then fine. Basically, the form I filled in and the form my GP filled in were a waste of time and effort. The entire assessment is based on 20 minutes with a doctor who has never seen you before. The check sheet with yes and no answers constitutes about 80% of that doctor's report, word for word. There is a small space underneath for "reasons for your answer". Most of them are either COMPLETELEY WRONG or misleading.

I've had enough now. If it wasn't for the fact that I can't afford to lose the money, I wouldn't fucking bother.

Oh, and DIAL have told me to contact Citizen's Advice, who (locally) are only open from 10am to 12pm, meaning Mr D has to take more time off work.

Christ...

Posted by domino at 1:12 PM | Comments (0)

January 5, 2006

Benefits Agency Angst

I mentioned a couple of posts ago that I had an assessment for claiming Incapacity Benefit in early December. I got a letter today, telling me I no longer qualify for IB. Looking at the letter, they might as well have written "we really have no clue about this lady's condition, and we're just ticking random boxes"

Last time I got this letter, it simply said that I still qualify, and that I had the right to appeal against the decision - the usual blurb, but this time, they've broken it down into a more in depth look at how they reached their decision, with a tick sheet of basic questions the answers to which award you 'points'. Get enough points, and you get the benefit.

The entire page on "physical health" is a series of 'no' answers - basically they think that because I was okay on that particular day, I don't have a physical health problem. Given that last week, I was crawling on the floor to go to the toilet because the pain in my back and hip was so bad I couldn't stand, I think they've got something wrong. Although my reason for not working and claiming this benefit is primarily due to my mental health problems, I'm sure it is important to get the facts right about my physical health problems too.

The page on "mental health" is a series of both yes and no responses, which I can't understand because I wasn't asked half the questions on this form. How the hell they have reached the conclusion that I "can answer the telephone and reliably take a message" is beyond me, because I wasn't even asked that. If I had been, I would have told them that the mere ringing of the telephone can cause me to have a panic attack, and there is NO WAY I can answer the phone if I don't know who it is.

They have also decided that my mental health problem "does not prevent me from undertaking leisure activities which I have previously enjoyed". I've lost count of the amount of times I've been invited places and declined because of how I feel, or how it would affect my anxiety. I can't go to the cinema if it's busy. I rarely go out with friends, because I need to feel safe. I don't go out on my bike any more, partly because of the pain, and partly because I can't go outside by myself. The terror I feel at the thought of leaving the house on my own is incredible.

I guess that the Benefits Agency can't have a system that takes into account every little nuance of my mental health, however this so-called "assessment" is ridiculous. As well as the medical I attended, there was also a detailed form to fill in about my illness. On it, I definitely put about my problems with the telephone, and I remember writing something to the tune of "I only go out when absolutely necessary, and even then, I have to be accompanied by my husband". It seems that my efforts to accurately describe my day to day life with this disability went unheeded.

I shall be appealing, partly because I need the money, and partly because I'd planned to apply for DLA, and although it has separate forms, I don't know how much of this "assessment" they will look at. What bothers me is that my answers to the questions (both on the form I received and the doctor's questions) were exactly the same as previous occasions. Nothing about my condition has changed. This whole thing needs to be consistent, for fucks sake...

Posted by domino at 6:21 PM | Comments (0)

November 9, 2005

hello

it's only me...

There's something about keeping a blog that's a bit like a garden. Despite using the weedkiller that is MTBlacklist, I still have had an abundance of weeds, which I shall have to sort out. I've changed the comments thing so that only registered typekey people can comment. I have no idea how that works, so if you can't comment, you know how to dig me in the ribs. I'll install one of those anti-spam comment thingies at some point, which will help.

Life has been a bit wierd over the last six months. I've been hovering in a strange place between getting depressed and trying to ignore the depression. This includes anything that could make it worse, such as writing here (the idea being that writing it down reinforces it) and Dealing With Things That Ought To Be Dealt With. It's left me feeling emotionally exhausted, but I have reached a place where I'm thinking, "if I don't deal with this, it'll just get worse" so I'm going to bite the bullet and Deal.

My apologies for ignoring you all. I didn't mean it. You know who you are...

Posted by domino at 9:14 AM | Comments (0)

March 9, 2005

Happy, happy tits!

I woke up yesterday morning after a night of fitful sleep, and surreal dreams that emulated the crazy thoughts that had been swirling around my head for the last week. I was totally wound up and emotional, dreading my appointment, convinced that I wouldn't keep my coffee and valium down.

The clinic was running late because someone was on holiday, but I found some trashy glossy magazine to read and looked at the pictures. I'd taken a book, but I just couldn't concentrate on reading it. Bitching about Callista Flockheart's dress was easy...

I think it was the Nurse Manager who examined me - she told me who she was, and I approved, but can I hell remember what she said. She was really nice though. Soothing, calming yet not condescending. My husband came into the exam room with me, and sat by the door looking like he was about to puke. The Nurse went through a form with me that they'd given me to fill in - everything on it was in Dr H's referral letter, but they made me write it all out again, because the consultant "preferred going by a set format" or something. Of course, the abuse history was all in that letter, and I didn't want to take any chances. At the bottom of the form, I wrote in capital letters: "please note: history of childhood sexual abuse" and "panic attack sufferer". It worked, because the Nurse was brilliant in explaining things.

She did a physical exam, which was just the same as Dr H's. She chattered to me the whole time, telling me that she could feel the lump, but it didn't feel like anything that could be bad. She said lots of women had lumpy breasts naturally, but said I did the right thing for getting it checked out.

As I got dressed she said she'd speak to the consultant and tell him what she'd found. She said normally on a patient's first visit, the consultant wanted to do an exam himself, but given the circumstances, he was happy for her to do the exam and report back.

When she came back, she said that they were almost certain that it was just a benign lump, maybe an inflamed mammory gland. They said they wouldn't do a mammo, because 1) it probably wouldn't show anything up because my breast tissue is too dense, and 2) it wasn't worth putting me through exams that I didn't need, given my history. So, no needles, no ultrasound. That was it. They said to keep an eye on it, but don't self-exam too often!

I'm grateful that Dr H told me what I could expect. It helped me feel in control of the situation. Since I saw her and she made the clinic appointment, I've told myself "it's my body, I know I need to get it checked out, but I can always say no..." Self empowerment is vital for abuse survivors, and believe me, it really helps to know that you are in control, and can say "no" at any time. The fact that the nurse explained everything she was going to do and why was such a help, and my telling the clinic about my history was vital. At the end of the day, I could have kept quiet about it, and gone through private hell while a male doctor examined me. As it was, I said something, and was met with fantastic empathy and caring.

I would encourage anyone in a similar situation to do the same.

Posted by domino at 10:19 AM | Comments (1)

March 7, 2005

Tits up...

I wasn't going to blog about this. It's too personal, it may be nothing, and thinking about it makes me feel sick. But, like I've said before, I'm here to blog about my life and how panic, anxiety and agoraphobia affect it, and if finding a lump in your left breast isn't panic inducing, I don't know what the hell is.

I saw my lovely GP on the 24th February. Usually, I can walk into her office without feeling the slightest twinge of anxiety. Ive known her for five years, and I trust her implicitly. She not only knows my medical history, but unlike many other doctors, takes it into account so I have the most holistic consultation possible.

The first thing she did was ask lots of questions about me, my breast, my family history. I'm in a category of women that's least likely to get breast cancer. Health wise, I'm doing all the right things. However, at that moment, it wasn't the 'c' word that worried me, it was the fact that she'd have to examine me.

My body image is so poor that I have trouble standing on my own without clothes on, let alone have a doctor examine my breasts. My history of child abuse means that my breasts dont symbolise womanhood or being shapely or beautiful, they dont represent something that can potentially give nourishment to a baby. My breasts symbolise something else - something horrible and dirty.

Up until now, its never been an issue. I have an exceptionally understanding husband, and we can love each other very much without him leering over my tits. The lump made it an issue. Dr H was fantastic, it has to be said. She has no idea how her talking randomly about chilblains (!) helped me cope. She was quick, yet thorough. She wasnt condescending, and through her chattering, she kept me informed. As far as scary breast exams go, I don't think I could have asked for anything more.

As I dressed, she described what she'd felt from a medical point of view. The tissue in my left breast was markedly lumpier than the right. There were two distinct lumps, however, and she said they should be checked out properly. I'd decided before my appointment that the outcome was going to be one of two possibilities. Either she was going to say it's just general lumpiness, come back and we'll check again - or she was going to refer me to a specialist.

She telephoned the clinic and made my appointment for the 8th March (thats tomorrow, folks) She explained that I would have a mammogram, but because young breast tissue is more dense, it may not show anything. I would also have an ultrasound, and a fine needle aspiration. The latter is basically where they stick a needle into your breast, and draw off cells to examine. Needles don't bother me - they never have. What bothers me is that the only person qualified to do it is the Consultant. The male Consultant...

Dr H has written in my referral letter (with my permission) that I have a problem with a strange man doing the exams, and why. She thinks that as far as possible, almost everything can be done by female staff, apart from the FNA.

Maybe I won't need it. Maybe they'll look at the ultrasound results and say "you're a picture of perfect health" and mutter something about hypochondria as they send me home.

You never know.

Posted by domino at 10:39 AM | Comments (0)

February 3, 2005

A Little Understanding, Please?

Yesterday, the BBC reported on the benefit reforms outlined by the government - namely the reforms regarding Incapacity Benefit. The benefit I happen to be claiming.

My first reaction was one of fear. The proposals outline a basic benefit, topped up if the claimant attends "job related assessments" and rehabilitation. I had flashes in my mind of my husband having to take time off work - again - to take me to these things, the panic attacks, the judgement from Benefits Agency officials because on the outside, I look 'normal'. My fear soon turned to annoyance, and I clicked the link to "have your say". I did, and clicked "submit". Waiting for my comment to be reviewed by the BBC staff, I started to read some of the previously published ones.

I suppose it's only inevitable that there are people out there who think that Incapacity Benefit claimants are a bunch of scroungers who don't want to work, but I found myself yet again feeling judged. The BBC says it publishes comments that "reflect the balance of opinion [they] have received so far". If this is the case, there are some very bigoted and insensitive people out there, who are content to make sweeping generalisations about people in my situation. It boils down to the same thing, over and over again. People who haven't experienced mental illness, or have watched a loved one suffer, will simply not understand the complexities and the utter helpessness that these diseases effectuate.

My illness is very complex. Last week, I walked to the end of the street by myself, to ask a builder for a quote to fix my roof. Three days later, I was panicking over absolutely nothing in Sainsbury's. No trigger, nothing. Just an inexorable feeling of drowning in fear. I can't explain why.

Maybe the problem that many people have, is that mental illness is not a black and white thing. If I broke my leg, you could look at x-rays, see the cast. There'd be something tangible to give reason to my inability to walk. Mental illness isn't like that. I look fine, if you saw me in the street, you probably wouldn't give me a second thought (unless I was having a panic attack!). There's nothing physically stopping me from leading a normal life.

I guess this is why my condition angers me so much. I'm in between. I'm not severely disabled, yet I'm not functioning 'normally'. Healthcare provisions in this area mean that I'd have to cross town to get therapy. As I said to my GP, if I can cross town, I don't need the therapy. In effect, I am stuck on my own, in a situation where I am having to make my treatment up as I go along. That's what makes it so hurtful when people refuse to try and empathise.

The full list of comments can be read here.

footnote: I am aware that I have used the word 'normal' in this entry. It's a word that I hate using, however in this case, I am referring to the 'normal' me - the me without fear, depression and panic.

Posted by domino at 12:44 PM | Comments (0)

April 14, 2004

B'doinga!

Spring is here. Spring is really, really here.

Over the winter, I wondered how much of my "winter blues" was coming off Efexor, or dealing with Ginger's job stress. Now that there is a real change in the weather, I can honestly say it was Seasonal Affective Disorder.

My mood has been almost euphoric lately. I'm doing so much more than usual, gardening, decorating, and working on a website for a friend. Four months ago, I'd have been lucky to manage any one of those things.

I think I am reaching a point where the Efexor is not something I think about as much. Before, it was "that bastard efexor" every five minutes, and, "I hate this shit". I remember saying that I had to try and stay focused on the positive, and now it feels like I have many more positives to focus on.

The panic and anxiety are still there, and the panic attacks are still laced with acid, and raw, but on the whole I'm a happier person. I guess I can channel my positivity into my recovery.

I missed my one year anniversary last week. April 8th 2003 was the day of my first weblog entry, and although I was with Bloggar before Moveable Type, I never really put my all into it. Things have changed a lot on the site since then. Not so long ago, I found a screen print out of my site in the early days, before I attempted to alter the stylesheets. It was weird, but also like looking at a baby photo in some ways. I think I even thought, "gosh, hasn't it grown!"

I think we both have.

Posted by domino at 12:39 PM | Comments (0)

March 10, 2004

It's a Record

I started writing this yesterday, the day after the "Biggest Panic Attack Ever!" and at some point thought, "this is crap, people don't want to read about my miserable-ness". The point is, that's what I'm supposed to be keeping a blog for. To record my panic attacks and anxiety, and let the world know what it's like.

In hindsight, I don't remember much about the actual attack, all I know is that somewhere in the middle of it, I did a complete work out, because my muscles are killing me. My chest, back, arms and legs all feel like they've done the rounds at the local gym, and yesterday I felt exhausted. I didn't sleep that night, and spent yesterday wandering around, not able to concentrate on anything for very long.

This is what I wrote (edited slightly so it makes more sense)

I think I set the record for the biggest panic attack ever. I want a statuette, dammit.

Monday, when Mr D finished work, we decided to go for a ride out (I wanted some lemonade and sandpaper anyway - strange diet, I know) but the main reason was that Mr D was convinced there was another way into work.

His journey isn't that long, but the main road he uses is very busy, and is a notorious accident blackspot. From what I've seen, I'm not surprised. There is something about that road that turns driver's brains to jelly, and for eight miles or so, there's this real-life Wacky Races situation. Of course, my husband drives like a saint...

So, we drove. I felt okay - I'd been busy that day, and was tired, but not really that anxious. It was a situation I'd been in many times before, there was nothing to be afraid of. I did well, we went into the supermarket and bought lemonade (and plenty of other things that we thought we needed), then we went to the DIY store and got the sandpaper.

On the way home, as we were coming into the town, we passed under a railway bridge, and suddenly there was this horrible clattering sound. I jumped, and someone reset the anxiety dial to max, but I didn't panic. There were cries of "What the bloody hell was that???" and I looked up and saw some kids on the top of the bridge. They'd obviously thrown something at the car.

I count in Japanese when my anxiety is bad. I do it because it's something that forces me to concentrate on things other than panic. It helps. It doesn't help when Mr D, still flustered from the arial attack, isn't watching the traffic lights change, and has to slam on his brakes to avoid hitting the car in front.

I think I screamed, I can't really remember. I remember yelling over and over for him to stop the car, I needed - no I HAD TO get out. It seemed like a million years before I could open the door. My head was swimming, I thought the car had stopped, and I fell out onto the pavement. I scrambled to get away, I stumbled, and somewhere a sane thought said, "sit down. just sit down" Somehow I realised that if I didn't sit down there and then, I would probably just keep running. I remember breathing - gasping and feeling like I was going to choke, the razor-wire fear enveloping my being. Then there was my husband. He was there, his arm around my shoulder, talking softly to me. His voice cutting through the insanity. I became more aware of my surroundings, and realised that I was sitting in the middle of some bushes, fetal and damp. Mr D helped me to the car, and I sat there with my feet out, my head in my hands, trying not to be sick.

When we got home - my familiar place, my safe place, and after I had cried a lot, Mr D said that two women had come over and asked if I was allright. I had no idea. He said that he'd explained to them I was having a panic attack, and I'd be okay, and they left us to it. I want to say to those two ladies, I'm sorry, I had no idea you were there. Thank you for caring. Thank you for showing concern, for being human.

Posted by domino at 8:26 AM | Comments (2)

February 18, 2004

Yuck

You know when you are doing something that takes some time to achieve, and you get to a point where you think, "yeah, I think this is really going to work"? Well, five weeks after reaching Dose Zero, I find myself getting freaky brain zaps again. I'd never really shifted the headache, and was on the verge of giving it a name, like a pet. I dunno, like, "Hal the Headache" or something. (Kind of fitting, really.) I'm still getting the nausea, only now it's confined to times when I've just eaten, or I'm too hot, or I'm out in the car, and maybe some other random times that make up the rest of the day.

My memory is still as atrocious as ever, and I can't concentrate on anything for very long. Certainly not long enough to think my way through a task then do something productive about it. My body has lulled me into a false sense of security, telling me, "yeah, this is getting easier" and then WHAM!! the shit hits me again. I can almost see some cheeky looking little imp with devil horns flicking a switch in my head that says "zap".

It's at times like this I am really grateful that I found Venlafaxine Healing. I can't tell you what it means to be able to vent this shit to people who have experienced it. There is strength in numbers, and we have all googled and researched and we all have something to contribute. I know from my web stats that people are googling for 'efexor' and 'venlafaxine' and happening on my weblog. If you do, and you need support, click on the link. As well as venting your spleen and getting support that way, there are also resources and links. It's worth it.

In other news, Ginger has talked to his manager, and they have [sarcasm]graciously[/sarcasm] offered him work until the end of March. He has decided to work flat weeks without overtime, and I have metamorphasised into his PA again. I just hope I don't forget anything important while I'm helping him search for a new job...

Posted by domino at 10:47 AM | Comments (0)

January 27, 2004

Thoughts of a Panicky Person

I've a funny feeling I don't need to write this. A quick search of my archives finds the exact same thoughts here.

This is the first time in ages I've had an appointment with M that I've needed to go to by myself. The last one Ginger took me, and before that, there was a big gap in our meetings as M was on leave.

I guess this time, it's a bit different in that the weather is crap. It is freezing cold, there is ice on the roads and paths, and snow is forecast. My appointment is at 3pm.

I've paced up and down, and wasted time this morning, and now I realise I could have called to see if M could see me any earlier. 3pm isn't bad - it's just that it'll be getting dark when I come home, and I don't have lights on my bike. I refuse to bike on the footpaths. Also, there'll be a lot of people and traffic at 4pm - schools coming out and stuff.

Or is it an excuse? I've not been out on my bike for ages. At least three months. I'm not too fit, and I'm feeling really panicky just thinking about what is going to happen if I need to get off and push because I'm too unhealthy to cycle up that hill, or if it's too dark, and I need to push my bike on the paths. What if the weather starts getting bad while I am out? I could come out of Psychology to find blizzards - it's forecast, after all.

Plus, I still feel a bit shit in my Post Efexor state. I'm still dizzy, and can't think straight. Maybe I'd be safer cancelling. But that would feel like failure. I wish I knew what to do. I hate the way my stupid brain works sometimes.

Posted by domino at 11:24 AM | Comments (0)

January 19, 2004

Woah...

Today is day... hang on, I've lost count. My memory is still being a bugger, and although I think I feel better, I'm still getting nausea and headaches, and waking up in the night drowning in sweat.

Yesterday, Ginger and I went out in the car, and within about ten minutes, I had the most disgusting feeling of motion sickness. I never get travel sick, except on coaches and buses. Never in cars, unless I read (which I'd be foolish to do, given that it makes me sick). The headache that accompanied the nausea was the kind that makes your scalp sensitive. Like some invisible person is plucking the hair out, working on one follicle at a time.

I closed my eyes, and concentrated on Michelle Branch, playing softly on the MP3. When I got out of the car, I thought I was going to fall over. I'm sure people in the car park of Sainsbury's thought I was drunk. Round the store, I clutched valiantly to the trolley, but still managed to forego walking in a straight line. I guess I didn't help when I wandered down the wines and spirits aisle, looking for the Arniston Bay chenin blanc...

The journey home was awful. I wouldn't let my freezing husband put the heater on, because the warmth made me feel worse. We needed to stop at the pet store on the way home. I needed some water conditioner for my aquarium, and I didn't want to wait unti next weekend, which is the only other time we could go. Ginger held onto me, and I freaked out at the tethered dog who was barking outside the store. It seemed there was one obsticle after another - a guy with a bucket collecting for an animal charity, crowds, a queue a mile long - I knew I was going to panic. I went straight to the fish section grabbed a bottle of water conditioner, and made for the checkout.

Normally, I look at the fish, maybe wander over to the rabbits and hamsters for a look, but yesterday I just wanted out. We paid and left.

Sitting at home over the past few days, I have felt that I was doing better. I thought I'd gotten over the worst of the withdrawal effects, and things could only get better. I have kept that in mind to help my recovery. To stay positive. Yesterday knocked that theory. I'm not as better as I thought. I've never been good at just plodding on. I'm just too impatient.

Posted by domino at 2:09 PM | Comments (1)

January 12, 2004

How it hasn't been a strain

One of the symptoms of quitting Venlafaxine/Effexor has been that my bowels have discovered regularity.

I've always verged on the constipated side, even before panic and anxiety took over my existence. I remember feeling awe when I found out people usually poo every day, not once a week. I remember thinking that pooing every other day was almost diarrhoea, and I guess on the occasions I did get 'proper' diarrhoea my 'normal' regularity made it a worse experience than most peoples.

The constipation hit its worst levels when I became hooked on dihydrocodeine. Codeine is a very constipating drug, and well, I was taking a hell of a lot more than I was supposed to. I remember trying to tackle this problem once by drinking insatiable amounts of water, and eating nothing but fruit and prunes all day. My bowels said, "sod this for a lark" and promptly clamped down, leaving me in a crumpled cramped mess for the next few days.

When I discovered anxiety and panic, my bowels discovered IBS. It happened quite quickly - I quit the dihydrocodeine (this is deja vu) cold turkey (because my doctor suggested to) and went through a few weeks of hell while my body craved and shrieked at me for its fix. At first, the cramps were unbearable. I remember sending my husband out to the chemist to get me a hot water bottle, which I applied to my stomach until it scalded. My bowels finally settled down into a new, sans-codeine routine. Well, I say routine. Over the last four years, I can see that it was a routine. And, if you count several weeks of constipation and a week of diarrhoea as routine, then it was one.

So, you can sympathise with my poor gut when you learn that for the last ten days (from when I started doing the every-other-day thing) I have had Regularity. It feels cleansing, in a colonoscopic way. The thing I want to know is this.

Do you count 'every ten minutes' as Regular?

Posted by domino at 9:05 AM | Comments (1)

January 7, 2004

Update

or, Effexor can kiss my ass

I can't believe that I've neglected my corner of the web for six weeks. To be honest, there's been other things going on, such as Christmas and money strife, so I guess my mind has been elsewhere.

Up until now, I have stuck with the 75mg of Effexor (venlafaxine) XR even though I had originally planned to quit altogether before now. I had a cold before Christmas, and really didn't think that I could deal with the added ache of withdrawal. So, I waited until that cleared up completely.

My plan was to reduce the dose by taking it every other day. As it's Effexor XR, it's a slow release capsule, and isn't available in a lower dose. Believe me, if it was available I'd be taking it right now. I started this plan at the weekend.

So, Saturday morning's dose officially started phase two. On Sunday, I abstained, and went about my day as normal. On Monday, I woke up with all the withdrawal sympytoms I described last time. I couldn't believe it - after missing only one dose. I realised I had some decisions to make. From previous experience, I know that Effexor gets into my system quite quickly, and that taking it every other day was going to result in alternate days of feeling okayish and feeling like shit.

Anecdotal evidence seems to suggest that taking another SSRI like Prozac (fluoxetine) helps with the seratonin levels whilst withdrawing from Effexor, thus reducing the withdrawal symptoms. (Thanks to Lisa for Googling for me) I realised I'd rather take my chances doing that, and quitting Effexor cold turkey, than doing this every-other-day thing which I knew was going to screw with me as much as it could.

Today, Wednesday, is my second day using this method. I'm taking 20mg of Prozac, and no Effexor at all.

I feel like shit, but not as many 'brain zaps' as before. I'm thankful. I feel sick, but I'm chewing on peppermints and have a good supply. I'm dizzy, but I plan to sit at the computer all day anyway. I have a headache, but I also have a box of Advil. I'm sweating, but I'm not going anywhere, so I don't care. What I do know is that this is the start of me being free again.

Posted by domino at 10:24 AM | Comments (2)

November 27, 2003

Neglectful

Over the past few weeks I have felt more and more as though my brain isn't working properly. It sounds crazy, but my concentration has gone completely. You have no idea how many times I have started with my blog, then deleted the whole thing because it looked stupid. I've never been good at accepting praise, or even giving myself credit for things well done, but if there was ever an award for stupidness it would belong to me.

The thing is, I know why all this is happening.

I am dealing with it, but it's going to take a while. About a month ago, I ran out of my prescription for Effexor. This strong antidepressant belongs to a group of drugs called SNRI's (Selective Norepinephrine Re-uptake Inhibitors) and is used a lot in Generalised Anxiety Disorder (ie me). I had a couple if pills left, and needed to spread them out over the next few days until I could get my script filled.

The withdrawal which I inevitably faced was horrible. The headaches and nausea reminded me of travel sickness, but then I was getting vertigo too. I've been trying to think how to describe what is commonly refered to as 'brain zaps'. This is as close as I can get it. You know when you stand up too quickly, and as well as feeling dizzy, you get a kind of "woosh, woosh" in your head? Well, that's what brain zaps feel like, only all the time.

I refilled my prescription, and started again. I assumed since my body was fighting to give up this stuff, it would be fairly easy getting back on it, especially since I'd only missed about five days doses. Wrong. When the nausea and headaches were still going strong after three weeks, I decided to take action. I wanted to come off this drug, and badly. Aside from anything else, I was dsiplaying side effects such as profuse sweating and memory loss - both of which I knew happened, but had felt fortunate that I had somehow missed. Until eighteen months after I started taking it, that is.

I have a theory for that. The past six months has seen a dramatic reduction in my anxiety levels. I don't know why. Maybe my bike has been better therapy than I have given it credit for. Whatever the reason, I'm sure that my norepinephrine levels have naturally increased as a result, so my body doesn't need the extra made by the Effexor. Or something. I have to have a theory.

So, a week after reducing my dose to 75mg, I still feel sick. I still have the headache from hell. I suppose I've been neglecting my body by confusing it with all these changes in doses. I now face the job of being patient with it, and seeing what happens next.

Posted by domino at 4:14 PM | Comments (2)

October 23, 2003

Winter

I lie and wait for morning
I think it knows my fear
I want so badly to see daylight
raising my hopes.

I steal seconds of weak sunshine
I wait for the rain to stop
I feel its fingers boring my soul
feeding the pain.

I sense the anger of cold
I feel the earth dying again
I dread the imminent winter
making me S.A.D.

Posted by domino at 9:24 AM | Comments (1)

August 20, 2003

Lots happening

Indeed.

Since I last updated my blog, I have had so much happening, I'm almost living my life from the sidelines.

Firstly, and most importantly, I bought a bicycle. This was something I had been thinking about for a while, because it would give me a reason/excuse to go outside more. Also, it was something my good friend George said about cycling being easier to achieve than walking (from an anxiety/panic point of view).

He was so right. I started by cycling around the garden - mainly because I was afraid of falling off and making an arse of myself in front of all the neighbours. Then, I progressed to cycling to the end of the street. I quickly went from that to cycling around the quiet streets in my estate. The feeling when I'm on my bike is amazing. I feel so free, and it is an excellent way of getting rid of the cobwebs.

Last weekend, I set myself a goal - and achieved it. I had a couple of parcels to send to the US, so I put them in my backpack, and cycled to the post office. This was so big for me, I can't tell you. My heart was beating so fast, I thought it might burst. However, I concentrated on the cool air of the morning, and obviously the sparse traffic. I took a few deep breaths, and I was fine. In fact, the worst thing that happened was my bum hurting! Five minutes on a bike, and I get saddle-sore!

I am keeping it up, not necessarily going to the post office or anything, but I'm riding around and getting used to being outside without Ginger.

Ginger has done the job interview thing, and it went really well. They are looking for someone who fits in with their small team, rather than someone with a shed-load of qualifications. Ginger said that he felt very comfortable with the interviewer, and not nervous at all. I guess that's a good sign too. The way things have been worded, and the way certain things have progressed, we are fairly certain that Ginger has the job. It's been advertised through an agency, and they have forwarded Ginger's references etc to the new company (henceforth known as, er, SpreadingTheJam Inc - based on Operation Toast with Jam - until I think of something better). Basically, we are waiting for the go ahead from one of the managers who seems a bit incognito.

Meanwhile, Ginger is back at TakingThePiss, and wishing he wasn't. Next Monday is a public holiday, and I'm guessing that SpreadingTheJam are waiting til that's over before they take Ginger on.

Posted by domino at 12:52 PM | Comments (0)

August 5, 2003

of heatwaves and trippy heart shit

I think summer is here at last. For the past two days, it has been warm and sunny, and a good excuse for me to get out and about.

I walked to the end of the street again on Saturday, and on Sunday, I made small talk with a neighbour I don't know that well (I know her cat, Ben, more than I know her) I told her about how I make catnip pillows, and fetched one over for Ben. I felt proud, that I was talking to someone without trying to get out of the situation.

Also on Sunday, I finished my front garden. Now, I have a lovely little brown picket fence dividing my garden and my next-door neighbours, and a deep border in front of it. I have planted all blues and whites, and have included two blue glazed pots filled with lavender. I have a beautiful blue buddleia, and two flowering hebe's - both blue. I feel happy that I have got all this done, however I now have a fucking trapped nerve in my shoulder (this happens every now and again, but is still annoying and painful).

I'm typing with pins-and-needles in my fingers...

The trippy heart shit is weird. I don't know what it is, or what causes it, but I sometimes have real trouble at night sleeping because of it. It feels like a surreal cross between heartburn, pins-and-needles, being tickled and being hyper-sensitive. I've had lots of theories as to what it is, ranging from being hot, to actual heartburn, to a kind of panic attack. It lasts for several hours, and I usually need some meds to help me sleep. I have tried all sorts of things to deal with it, treating it like a panic attack. I've tried reading, watching TV, the usual diversional activities. It's worse when I lie down, but makes me restless anyway. Often, I'll come online, because it is something to take my mind off it, and I'm sitting up.

So, it was 2am before I got to sleep last night. The hot weather didn't help, and I think that started me off being restless. I mentally paced up and down, there was nothing on TV apart from some EMT Rescue thing on Discovery. I couldn't concentrate on the internet, so I went downstairs. I had a drink, I lay on the sofa. I sat up again, removing two cats as I did so. At 1am, I went out into the garden in my nightie and bare feet, and walked around the lawn, breathing in the delicious night air.

With my feet still damp, I went back to bed, and managed to sleep until around 7am.

*sigh*

Posted by domino at 9:28 PM | Comments (1)

July 30, 2003

Someone praise me...

I just walked to the end of the street on my own.

It's not far, but it's a start. Can you say "heart in mouth"? I'm shaking, but I didn't panic. I tried to ring Ginger while I was out, but he didn't answer, so I wrote him a text message instead. I need some praise, dammit!!!

I think texting while walking helped - it took my mind off Being Outside.

Bugger! I feel weird...

Posted by domino at 9:55 AM | Comments (8)

July 29, 2003

oh boy... oh boy...

I'm meeting my CPN here at home for the first time this afternoon. He's due here at two.

I've met him once before, at the doctor's surgery. We had a long chat about my anxiety and panic, and his aim is to get me to face my fears.

Well, him being in my house is facing one fear. By choice, I opted for an appointment with him here, because I need to get used to people being in my house. I need to feel comfortable with that. So, here I am, at one thirty, with chest pains and palps, and I can't sit still. I think I am going to wear out my hoover. I have cleaned the upstairs and downstairs bathrooms, the kitchen, and the hall. The lounge was okay, but I have hoovered for England.

The fun part is, he doesn't like cats. I have let the cats upstairs, where they are happily sleeping on my bed (except Minnie is on top of the wardrobe with her feet in the air) They'll not bother coming downstairs, especially if there's a stranger. I'm not sure how to take people who don't like cats. It's almost like they don't like something about me - as my cats are such a big part of my life.

I'll keep you posted...

Posted by domino at 3:17 PM | Comments (0)

July 7, 2003

Ow

So, week three of "Ginger-Absence" begins.

This whole situation is really getting us both down. Ginger hates the job, and I of course, am feeling lonely and bored.

At the end of the day, it is work, and we are grinning and bearing it while he looks for something better.

In other news, my right shoulder has gone into spasm, and I am in absolute and total agony. I am, however, stoned on painkillers and do not give a shit. I also have these groovy muscle relaxant tablets, which help. It does this every now and again. It's either my right shoulder, my neck, or both. Imagine getting a charley horse that lasts for several days. Well, that's what this feels like.

The meds make me feel all druggy and wired, and the pain on it's own is horrible. The most annoying thing is that I can hardly move, so all the things I'd planned to do to keep myself occupied while Ginger was away have been put on one side in favour of watching Biography Channel and Big Brother's interactive feed.

Oh, and who made my head weigh forty six tonnes in the night???

Posted by domino at 9:24 PM | Comments (0)

May 26, 2003

musings

I can't decide whether this is a rant, or just general observations. We'll see how it goes.

I have noticed that my agora increases significantly the less I go out. Saturday was proof of that. Ginger suggested a walk, and I turned him down. I can't be bothered. I'm scared that I will have a panic attack as big as the last one, and I can feel myself getting more and more afraid.

I see my therapist tomorrow. M is lovely, she understands me and doesn't judge, the way others have. M is willing to help me deal with whatever is pissing me off at the time. I like this. We have a plan. I have decided to write down about my childhood, (people don't seem to 'get' how important my Grandma was in my life) from the start, and continue chronologically until I deal with my demons. This has really been in fits and starts, because the last time I saw her, I ranted about Ginger a bit, and the whole redundancy thing. I gave her my "Chapter 2" to read in the meantime, so I guess we'll be discussing that this time.

I want to go back and see my GP. I am unhappy with my meds (venlafaxine and diazepam) because the venlafaxine is not doing anything, (I tried a higher dose last year, and didn't notice any effect except when I reduced the dose again, and felt violently sick all the time) and the diazepam is not doing what I want tit to do. This makes me sound like a proper druggie, but diazepam works slowly and stays in your system longer. If I have a PA and take say, 5mg of diazepam, I still have the panic and all it's freaky glory, then later I feel zonked, and invariably sleep. I want something that will work quickly, and get out of my system quicker. Ie alprazolam - Xanax. I asked for Xanax by name once, and was told that it had been banned here in the UK. I have searched and searched, and cannot find any evidence to support this. Aside from anything, someone once told me that they had been on Xanax for ages, without any problems. I guess it depends on your doctor, but I HATE being lied to. Actually, on the off chance that anyone reading knows of any evidence to support alprazolam/Xanax being banned in the UK, please e-mail me.

GP's are so anti-benzo. Yes, I can appreciate their concerns over addiction etc. but surely they can see that these meds can help people like me with severe Anxiety Disorders? Today is a public holiday, so I will call in the morning to see if I can get in. Don't even get me started on the new appointments system...

Posted by domino at 2:05 PM | Comments (0)