Wouldn’t it be nice?
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.
The Guardian have this rather funky little video explaining about CBT.
I watched it – I think it’s important that information like that is put out there – and then I felt a pang of anxiety.
The lady who has kindly allowed the BMJ (who made the film) into her OCD world describes some of the tasks that she was given to show her that nothing bad would happen if she didn’t was her hands ten million times. The example they show in the film is of her putting her hand down the toilet, then eating without washing her hands.
Now, I’ve been told I have “OCD tendencies” but I don’t know ANYONE that wouldn’t be knocked a bit sick by that. It’s the equivalent of throwing a tarantula at someone with a spider phobia and saying pleasantly, “now, how did that make you feel?”
I’m aware that they don’t have a huge amount of time to show everything, and there is a risk that people could have “information overload” but how hard would it be to say “this process is done gradually, exploring your feelings and actions as you go, with goals and tasks being managable” See? How long did that take?
If I had OCD and saw that film, I’d probably think “holy fucking shit, there’s no way I can do that” and resign myself to a lifetime of chapped skin and a clean loo.
CBT is done GRADUALLY, people, and if you really really struggle with a task, they look at doing it a bit differently, or more slowly.
Now, how did that make you feel?
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.
Today, I am agoraphobic. Today, I don’t go anywhere without my long suffering husband. I cling to his hand constantly, terrified of losing contact with him even for a moment. At home, I don’t answer the phone, I keep the curtains closed – and I certainly don’t answer the door. In fact, someone knocking at the door will often trigger a panic attack. The door is always locked.
On the rare occasion that I go out, my husband must be with me. I don’t trust anyone else. I must know in advance where we’re going, and in what order. Any deviation from that could trigger panic. I can’t stay out too long. I feel exposed and vulnerable, like I’m standing naked in the high street after drinking ten espressos. People are staring at me. I know they are. They think things about me – bad things – and I just want to escape. I just want to feel safe.
Today, I have lost contact with most of my friends. I no longer do the things I used to beause panic and agoraphobia have taken over my life. I can’t go out socially – god no. Just the thought makes my heart race. I can’t remember the last time I went to the cinema, and I used to love that. Now, the idea of being in a dark room with all those noises, images, and god – the people. I can’t deal with people.
Today, my daily life consists of trying to disappear, trying to hide. I don’t do much at home. I don’t have any hobbies any more because I can’t concentrate for long and I get angry and frustrated with myself. I often get depressed, but can’t take medication because it makes me sick. Home is my safe place, I know where things are, and that doors and windows are locked. I just hope the phone doesn’t ring.
Today, I have a medical for the Benefits Agency, and I’m bricking it. That bit, at least, is still true.
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.)
It all started ages ago when I was reading something about antidepressants. It suggested that antidepressants often don’t work with bipolar depression. It struck a chord with me, because for as long as I can remember, not one single antidepressant has ever helped me. In fact, the only reason I know they’re not sweeties, is that I always get plagued with the side effects.
It came to a head about two months ago, when I went back to the doctor and said I was feeling low again. She went through the list of stuff I’d taken before on the computer, pointing out that I “hadn’t had much luck” with antidepressants. She then suggested a new one that’s recently come to the market, called duloxetine. Apparently, it’s an SNRI, not an SSRI, so might work slightly differently.
For three weeks I persevered with them, but in the end, they were making me more miserable because of the intense nausea, headaches, dizziness, and a nasty gaggy feeling constantly at the back of my throat. You know the one – where you can’t decide whether you’re going to yawn or throw up, and then do both for good measure. So, I stopped taking them. In the end, I was glad I did. I felt even more nauseus coming off the bloody things.
It was partly this which made me suggest bipolar to my GP. There were other things, too. Things like the suddenness of my mood changes. It made no sense that over the summer I felt fine, then in August, I suddenly felt like crap warmed up. A week after stopping the duloxetine, I felt high as a kite. I could do anything. I remembered the article I’d read, and did a bit more reading. Everything seemed to fall into place.
I know GPs hate it when you go in and say “I’ve been looking on the internet, and…” but my GP was fine, saying she trusted me to look on “proper” websites. I don’t know what I expected, but when she said, “yes, to be honest, I’ve suspected bipolar for some time” I almost fell of the chair. She asked if I wanted to be referred to a psychiatrist, which I declined. I don’t mind seeing someone if I need to, but as I’m not in the middle of a crisis, and I’m pretty much managing to get on with life, I don’t really see the need. We discussed medication, including mood stabilisers. Again, I didn’t think I was bad enough to warrant meds, but then often people in a state of mania think there’s nothing wrong. She told me to keep an eye on my moods, and that was about it.
Since then, I’ve been doing a lot of reading, and so many things leave me saying “woah..” like Keanu Reeves in Bill & Ted. Firstly, I found a bit of research that was done with biploar sufferers. Out of over 4000 participants, over half had some kind of anxiety problem too. Another study found that a third of respondants also had panic attacks. I’ve also learned that mood changes with bipolar can be seasonal – the person more likely to feel depressed in the winter and experience mania in the warmer months.
The whole thing is leaving me with a lot of questions, and it seems the more I learn, the more I wonder. Maybe I do need to talk to a professional….
No, go on, guess.
I’ve decided to start writing again. No, don’t fall over.
There’s a few reasons for this. Firstly, people still read this blog. Even with 18 months of not posting, they still read it, then email me to ask if I’m okay because I haven’t written anything for so long. I’m both flattered and touched – thank you.
Secondly, I seem to be starting a new chapter with my mental health issues. Last week, I was officially diagnosed with bipolar disorder. Far from this being a crushing blow to my esteem, it’s actually a relief – so many things make sense now. I’m still on a learning curve, though, and as many bipolar people find it helpful to keep a record of their moods, I thought this would be a good place to do so. The type of bipolar I have is type 2, which essentially means I don’t have full blown manic phases, instead I get hypomania. My doctor said she had suspected bipolar for a while, but as I wasn’t in the middle of a crisis, and was doing well generally, it seemed silly to burden me with another mental health issue.
“But what about the agoraphobia?” I hear you cry. Well, the CBT went incredibly well. Part of the reason I stopped blogging was that it took a lot out of me mentally, and I found it really hard to write it all down too. The upshot of it is that I am no longer agoraphobic. I am doing so much now it’s hard to know where to start. I can get the bus into town and go shopping. Last year, I started going to a yoga class by myself – where I knew one other person (and she didn’t know about my ‘issues’ at the time). I’m plodding along, but there are still things that scare the crap out of me, like actually getting a job. I think it’s the fear of failure more than anything, and that it’s so final – if I screw up or decide I can’t manage, I know it will make a huge dent in my self esteem.
I’ve decided to write about my recovery from agoraphobia retrospectively, and I’ll whack it all in the CBT category, so it’s easy to find. I think this is important for my own benefit, and also to show people what it’s all about. If someone is about to embark on CBT, or has a loved one doing so, or their doctor is rattling on about a referral, then hopefully my witterings will help.
I’m also going to change the layout of the blog. I’ve had the mauve design forever, and I got lazy with the scripts that do my comments and stuff, which is why it looks like crap when you click on those links. However, I’ve been out of the loop for ages regarding scripts and things, so I might balls it all up, you’ll just have to wait and see.
So, ding ding, round two!
I’ve upgraded to MT4 – and enabled comments again. Just making sure I’ve done it right *crosses fingers*
There’s no wonder the NHS has no money for front line staff when they send me an appointment letter for the Dermatology Clinic, then send m a reminder letter the following day…
(I haven’t forgotten about the medical, I just need to have my head in a better place to post about it. Ditto getting the comments sorted)