starting again, again

It is incredibly difficult to restart a blog after almost 3 years absence.  I feel almost compelled to write a post about what has happened in those three years, how I recovered from agoraphobia, how I got a job (and lost it again) and how my old back problems have flared up with a vengeance.  It’s this which has prompted me to start writing again.

In many ways, my life is very similar to how it was when I was agoraphobic.  I don’t go out much by myself – not because of fear, but because my mobility is poor and the pain starts to become problematic.  Mr D is still my rock, and without him I think I’d be utterly stuck.

My reason for writing again is purely cathartic.  I am in pain, am struggling and have had enough.  Last time my back was very poorly, it helped me to keep a diary of what was going on, partly so that in my meds addled brain I could keep a note of what was happening.    I understand that people don’t want to read blogs which are all moany and pathetic, but it’s what I need right now.  I doubt anyone still has my RSS feed anyway.

My back problem is this:  I have arthritis in my spine, and three ruptured discs.  When my GP told me the results of my MRI scan, she actually apologised for not sending me for an MRI sooner.  She’d thought that my problems were merely a flare up of the old issue.  I’ve been referred to neurosurgery – this was an obstacle course in itself, as I had to be first referred to the musculoskeletal clinic for them to refer me.  In the end they didn’t even need to see me.

My appointment with the consultant neurosurgeon is on 14th May, and frankly I am counting the days.  The pain is constant, and if I try to ignore it, I get this sickly burning sensation in my spine.  I am struggling with most daily tasks – Mr D helps me put my knickers and socks on in the morning, and I need his help getting in and out of the bath.  I hate this.  I hate having to ask for help constantly and feel guilty that my husband works five long days a week – sometimes six – and when he comes home he is faced with a messy house and chores as long as your arm.  While he’s been out, I have mostly done bugger all, and consider myself lucky if I’ve managed to put a load of washing through.

So, I am going to try blogging.  Hopefully I’ll keep it up this time, and maybe it won’t be a constant moan.

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The Medical

They always seem to do these things in the middle of the day. Yet again, Mr D had to go to his boss and explain why he needed to take an entire day off (this would come out of his banked hours, so he basically lost a day’s pay to take me to this medical). Still, it would give us time to get there, and most of an afternoon to do what we wanted.
The letter (which they’ve kindly kept) said something about bringing identification. Off the top of my head, it said “passport or birth certificate, or three other forms of identification such as driving licence etc”. Okay, my passport is in my maiden name, as is my birth certificate. I don’t drive, and “etc” could be anything. I looked at various letters – bank statements (do I really want them to take a photocopy of my bank statement?) electricity bill (addressed to Mr & Mrs, with no initials let alone first names) and in the end took my passport and my wedding certificate, and prayed that it would be enough.
Why do they always say “arrive ten minutes early” when they always seem to run late? I sat there for what felt like HOURS. At the desk, I babbled about my passport and signed a form, which could have been anything. I asked what the name of the doctor was, and was told that “it depended who picked my file up first”. I found a seat in the corner, and we waited. Every time the door opened and another name was called, my heart hit the roof of my mouth. I’d decided to let the anxiety do it’s thing – it wouldn’t look very good if I told the doctor I rarely go out, and I was sitting there as calm as a cucumber. Suddenly, I had a very good reason to feel anxious. For a brief moment, through the glass panel in the door, I swore I saw That Doctor from 2005. The one who failed me.
I cannot describe the range of emotions I felt in that split second. I’d already gone through the “what ifs” last time, and had concluded that there was a chance he no longer worked for them. Now, suddenly, there was a very real possiblity that my medical would be doomed before it started. Did I have the right to refuse to be examined by a particular doctor? What if they asked why? How on earth could I say “I don’t trust him, he didn’t even ask me about the condition that I was claiming for, he twisted my answers and on one occasion, he outright lied on the forms.”
I was now in a kind of lottery. About five doctors had called people through, and although he wasn’t one of them, in my head that shortened the odds that I would get him. Later, Mr D told me that he was convinced I was going to have a panic attack. Maybe with hindsight it was good timing, because soon I was called through by a tall older man. Not That Doctor.
Doctor Tall was actually rather nice. He explained what would be happening and seemed really sympathetic to my situation. The answers to his questions flowed easily, I gave him the information he needed, and a couple of times he preceeded with “this is probably a daft question but…” in relation to whether I’d had any worries about attending the medical and whether I went on holiday.
At the end, he told me what happened next (the assessment is looked at by the “decision makers” and I’d get a letter in due course) and he told me I’d done well, saying “I appreciate it must be hard for you”. I would have been floored if my legs weren’t like jelly to start with. He also told me that although it wasn’t up to him, he didn’t forsee me having any problems continuing with IB, and not to worry too much. Four years ago, I wanted to write a complaint letter about the doctor doing the medical. This time round, I feel like writing a thank you letter.
When we got back to the car the tension and anxiety spilled out, and I had a good cry. This time, the medical really got to me. I don’t know if this was because the doctor was nice or because I’d reminded myself of how bad I used to be. I do think the whole experience showed that the anxiety problem isn’t completely gone, and I’m still a bit shocked at how much of a wreck I was.

Don’t Panic!

About a hundred years ago, I was sitting in A&E waiting for Mr D who had dropped something heavy on his foot. We had to wait an age, and while we were sitting there, three women came in. One was considerably younger than the other two, and seemed to be in distress. One of the two older women told the receptionist that the girl was having a panic attack.
I can remember initially feeling a great pang of empathy for this girl, now sitting in the waiting room near me, her white knuckles clamped to her chair. However, my feelings soon turned to frustration – what on earth did they think A&E could do?
This is why it is with a tinge of frustration and irritation I read on Twitter that EMT blogger Tom Reynolds got sent to someone having a panic attack – and this was their SECOND ambulance. Obviously I don’t know who called the ambo, although I’m inclined to think it wasn’t the panicker (unless it was a mild panic attack, and if so, I think he has bigger problems than a panic attack itself) but it bothers me. Of course, I don’t know the whole story, and indeed, shouldn’t. Patient confidentiality, and all that.
I have the greatest respect for people like Tom Reynolds, who deal with the unknown every day, often putting their lives on the line and dealing with every patient with courtesy and empathy. I know that a good chunk of their job is spent dealing with crap – the drunks, the “stubbed toes” and the vague sniffles. I read Random Reality and I too wonder what on earth society is coming to when people call ambulances out for such mundane things. As such, I think it’s only natural that Tom would roll his eyes and wonder what on earth he’s doing there when his patient is having a panic attack. I am, too.
One of my biggest fears when I was having panic attacks was that people would make a massive fuss when all I wanted to do was disappear. I think someone calling an ambulance would have freaked me out even more – the fear experienced during a panic attack magnifies the fear of everything else, including things like being sectioned, being out of control – even fear of dying.
I can imagine what was going through this patient’s mind. “I can’t breathe” “my chest hurts” “I’m going to faint” “I’m going to be sick” . If these are conveyed to someone nearby who doesn’t know what to do, I can see how instinctive it would be to dial 999. Plus, although ambulance control are incredibly skilled, I believe things like chest pain and difficulty breathing automatically elevate the category of the emergency. If it was the patient himself who called, then perhaps at least the wheels will have been set in motion for him to get further help. One can only hope.
So, what do you do if you’re with someone and they have a panic attack? I guess the easiest answer is talk to them. Hold their hand and tell them it’ll pass. Distract them by doing a simple breathing exercise with them, counting in and out. The adrenaline will subside, and things will calm down. There’s no need for an ambulance. As my CPN used to say – nobody ever died of a panic attack.
(I should add that when my CPN said that, I could have thumped him, along with “it’s only adrenaline” – true, but not very helpful.)

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.

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”

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…

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”.