I’ve been asked how I got over the worst of my agoraphobia. The really bad days are years in my past, thankfully, but I’ll write what I can remember. For me, I suspect it was mostly luck, as I live in a small town and have managed to make most of it my ‘safe zone’.
When it came to getting out of the house… I didn’t want to become house-bound, so when it was starting to happen, I broke out of it by doing something my mother told me later was stupid… I left the house at night, when it was quiet and dark — walked in the local area, round and round. I went out to where the small shops were, and walked there too, among the buildings and narrow paths.
At one point I nearly tripped over a man who appeared to have taken drugs or was drinking or something.
I walked past my own house several times in my trips around, and could see the cats sitting in the porch watching me in a puzzled way… that made me smile, though faintly!
Was it stupid? Yes, maybe it was dangerous and I shouldn’t have done it on my own, even though I live in a quiet town. For people in a bigger town, it’s an even worse idea. Did it make a difference? Maybe, in the sense that I was demonstrating to myself that the local area was mine and I could walk around in it if I chose to. It was as much ‘mine’ as anyone else’s.
Having got out of the house, for me what helped:
(1) It’s not a huge town and I could walk most places rather than get the bus.
(2) Family were in the area, so I wasn’t alone.
(3) It helped if I had something along with me (a steadying influence) so I take my shopping trolley everywhere. It made a huge difference, to the degree I can sometimes go without it now, though it depends on where I am and how long I’ll be there for. The best shopping trolleys have big rubber wheels… plastic wheels rattle and are noisy.
(4) Take small steps. For instance, at the beginning (when recovering from a bad spell) I’d only go to a small shop round the corner for groceries, and just get a basketful at a time — a huge barrowload is too much! Best to pay by cash and not spend long. I’d usually hang around admiring tins of peaches or something if there was a queue, but as soon as the queue disappeared or became much shorter, I’d abandon the peaches and join it.
(5) I’d go really early in the morning if I had to go to the supermarket — it was quiet but they had an annoying habit of only having one checkout open, so sometimes the queue might back up a bit… usually it was OK. I remember a colleague telling me I was masochistic going to the supermarket so early in the morning just for a can of kitten food. 🙂 Trouble was, if I didn’t go early, I felt I couldn’t go at all.
(6) I’d get myself a little gift sometimes to get myself into a shop… for instance, I saw a plush rhino through the chemist’s window that I took a fancy to, so going in and buying it was its own reward.
(7) Distraction is a very good weapon, as is fading memory. The best way I can explain it, is that I’m more likely to get wound up if I’m going out every day or thinking about my anxiety all the time. If I rest a lot and do something fun at home, like artwork, and only go out sometimes, I am much more relaxed… it’s as though I’ve literally forgotten. My mother thinks people should go out every day to keep in the swim of things, and I guess that’s what works for her… but for me it’s a bad idea! Perhaps she proves to herself every day that people are nice and she can get on with them, but as I’m too deaf to really talk to anyone, I just remember every day how busy the roads are, how difficult it is for me to make myself understood, and how impatient people can be. 🙄 When I’ve forgotten all about that, I’m better able to focus on the positive aspects of going out.
(8) When I was working (and going through the worst of it at that time) I remember a couple of psychological tricks I used when walking to the office.
(a) I was too scared to go, but knew I had to. So I would say to myself that getting out of the house didn’t mean I was really going to the office! I could just walk a little while and see how it went. I said to myself “just walk as far as that lamppost, and if you still want to go home, you can go home.” That way I would get all the way to work because I no longer felt pressured into going… it had become a choice.
(b) Another trick would propel me across open ground, which was harder than walking alongside a wall. I’d pick something I could think of as a kind of wall… yellow lines running through the car park or the rooftops of nearby houses… and make those my ‘wall’ while getting across the open space. It was a bit dicey, I admit, as someone suddenly racing towards me (or cutting between me and my ‘wall’) could throw me off balance! 😛
(9) Usually there are workarounds… a quieter shop, a quiet footpath instead of the busy road, a different time when most of the people have gone.
(10) Stay aware of the seasons. Town seems to be more busy at certain times of the year… I noticed my anxiety would start rising in May, when more people appeared on the streets. Perhaps this is the real reason I’ve started to love autumn… the pace slows down.
One thing that kept me going was the thought that it would be easier to deal with it now… things always start feeding on themselves if you leave them too long. If I was going to break through the anxiety and get some of what I wanted out of life, why shouldn’t it be now rather than later?
I used to avoid catching people’s eye when I was going through the worst of it, but one day looked up and looked straight at this guy, who smiled. I smiled back — that’s when I knew the worst was over! It does show… you have no idea how much your kindness can affect someone.
Agoraphobia is a tough thing to deal with and I have learned not to underestimate it. I anthropomorphized mine as a ‘black beast’, and made this poem by Ted Hughes my own… merely because I love Ted Hughes poetry?? The causes of anxiety can be as hard to locate as the beast in the poem! Perhaps thinking of it that way made it easier for me to deal with, as though it was a creature in a book and not part of me.
I hope something in all of this helps someone, though I don’t really recommend wandering around at the dead of night. 🙂
It’s not anger, exactly, and I’m not annoyed with anyone in particular, but I feel as though my fur has been stroked backward.
I completed Session One of the online cognitive behavioural therapy (CBT) course.
First I had to sort out incompatibilities.
(1) Adobe Flash Player — had to use Adobe’s uninstaller before I could install the most recent version of Flash Player, which turned out to have been put in by old software. I hesitated because I couldn’t see why it was necessary, and was suspicious.
(2) Safari (probably because of Flash). Needed a different browser.
I tried to install Chrome, but it kept saying ‘thanks for downloading’ though nothing was happening. So I got Firefox, and found myself registering for an account so I could synchronize bookmarks (why?), then downloading Firefox to the iPad so the process could be completed.
I suspect it wasn’t mandatory to have a Firefox account, but by that time I was past trying to figure these things out — I just wanted to do what I was told so I could get on with life. I even made Firefox my default browser (I was that far gone!) but reverted to Safari a few days later.
The two browsers were playing tug of war. Safari used to be a happy ‘only browser’ on my Mac, but now there was another in the roost.
“Do you want to make me your default browser?”
You fire up the first one out of habit, as it was your default browser till very recently.
“Do you want to make me your default browser?”
“Er…. oh, go on then!”
You switch back to the other one, as that’s where the online CBT account is lurking.
“Do you want to…?”
By the time all issues were fixed, it was almost bedtime, so I left ‘Session One’ for another day.
‘Another day’ arrived…
I could think of fun things I would rather be doing this sunny afternoon, such as uploading photographs from my camera and looking to see if they were any good, but I might as well get this CBT thing over with.
Some time ago I put cheap paper in the printer especially for the CBT course, but Mum used it all on a manual for our new dishwasher, so I put in more… and now we were ready to rumble!
Subtitles were turned on so I didn’t need to listen to the course, and automatically put on some soothing music. The subtitles said something about music playing at the start, and I thought to myself, “Well, thanks, but I’ve got my own.”
I don’t know what they were playing, but mine happened to be Just the Way You Are by the Piano Guys.
Right now, I lack words to describe what I thought about Session One.
I mentioned in my last post (Shrouded in Scottish Gloom) that I’ve done CBT before and didn’t take to it. On the other hand, I thought once I got into this online course, I might enjoy it. I have a tidy mind… I like creating databases, organizing files and photos, and answering questionnaires and quizzes. Why wouldn’t I enjoy this too?
Nevertheless, I began the session feeling irritated, and it only got worse. I didn’t want to answer the questions.
“Did anything happen during the past week to upset or disturb you?”
“Oh dear. What was it?”
I couldn’t believe I had to answer this.
“Well, we had to vote in a general election and then there was all the political fallout with everybody blaming everybody else…”
OK, I didn’t type that, but, honestly! I ended up backtracking and saying, “No. Nothing happened.” and the squiggly figure gave me a squinty-eyed look and said, “Hmmmmm…”
I don’t think it believed me.
It shocked and surprised me how reluctant I was to give any information at all. I just wanted to see what it had to say and have done, but if I had to interact to this degree, I had no wish to complete the course.
I realize this isn’t the point… it’s supposed to be a tool that I use to tighten up screws in my head that might happen to be a bit loose, so if it doesn’t know what screws those are, there isn’t a lot it can do. This reflection didn’t comfort me, and my irritation grew so bad I kept stopping and staring unblinkingly at the screen for long moments.
How many times a week do I get anxious? Once a week? Five times a week?
No, it doesn’t work like that!
I quit the session altogether, absolutely smouldering, then gave myself a good talking-to. I didn’t want to have to explain to people why I didn’t want to do it… it seemed easier to shut my eyes and get it over with. That way you make fewer waves and it defuses the situation. After all, it’s not a big deal… it’s just an amped-up questionnaire.
I went back in and found I had to sit through the entire thing again, homilies and all, answering questions I’d already answered… but changed a few of my responses this time, taking a more measured attitude to it, so it was all to the good.
At the end, I was asked if any of it helped, and I answered honestly… no it didn’t. If I could have given it a minus score, I would have.
The forum did, though! There were people on it who had almost identical thoughts and emotions about the first session, including “I reallyreallyreally don’t want to do this!!” but in the end rationalizing that it’s not a big deal and just to get on with it.
What gets me is that it’s been a few hours now since I did the session, and I still feel like an electrocuted jellyfish.
One thing worth noting… people on the forum said the first session is notoriously awful, but it gets better, and I might gain some benefit in later sessions. So just hang in there…
…just stay clear of my stingers for a while. 😛
The garden looks really good just now. My sister takes care of it every weekend, and I’m amazed at how neat and pretty it is. When I peek out the back door and smell lilac, I understand why gardeners love what they do. There’s something sane, calm and peaceful about the outdoor landscape… it’s an escape for practical, hard-working people.
It makes me yearn to be that kind of person too.
I’m more the kind of person who strolls around with a camera and feels happy at the beauty other people have created. Unfortunately, Scotland doesn’t like us to have heatwaves for very long, and there’s a lot of dreich weather at the moment. Yesterday it couldn’t make up its mind between strong sun, drenching rain, and the occasional bolt of lightning. Today it decided to go ‘all rain’… dark grey clouds parading overhead with shimmering sheets of crystals dangling from their misty earlobes.
When the day was at its darkest, I came across a monster snail clinging to the upstairs window. It reminded me of 20,000 Leagues Under the Sea… water all around and this muscular, glistening creature seeking a way in. Visualizing its fellows squirming all over the house, roof and all, I could understand my mother’s utter abomination of them. She gets the same look on her face that Ripley gets in Alien.
If you were on a spaceship with those things on it, you’d do better with her as a shipmate than me.
I don’t mind the odd snail or group of snails, but we have too many. They slither all over — slugs too — and roll on their backs, drinking in the downpours.
The other night I was trying to move a wheelie bin without stepping on a single invertebrate, and it was impossible. I swear there was either a slug or a snail trekking across each square foot of ground, and because it was dark, I couldn’t even see them all. Despite the best I could do, the bin and I left a trail of devastation in our wake.
Have I complained about this before? I’ve a feeling I have.
Anyhow, with the lowering weather, some sadness, and a general feeling of being under siege, it seemed a good day to activate my online CBT account.
“What’s that?” you say, suddenly looking nervous. “CBT??”
Our GP thinks it might help combat my chronic anxiety, but I ignored the activation request for two weeks. I could always think of something better to do! I don’t have raging agoraphobia any more, but I’ve had a traumatic few years… it’s like a sleeping Leviathan stirring. If it comes up again, it could be bad.
I don’t like cognitive behavioural therapy. I’ve tried it before and it left me bemused. I felt more stressed attending the sessions than at any other time, so I cut them short.
I have to confess, when I read that I would need to have a working printer in order to do the current course, I was irritated. We have ours loaded with 100gsm stuff. I was determined not to start the course till I’d dived out and bought the cheapest paper I could find — 75gsm. I put that in on top.
OK, well, I activated the CBT course today, answered a raft of multiple choice questions, then it suddenly stopped, and I was confused. It just told me I would need an up-to-date Flash Player (which I’ve got) in order to be able to view my sessions, but I couldn’t see any other links, or a home page, or even a bit of text saying “thank you — see you next week!” or something of the kind.
Is this typical NHS behaviour?
I’ve had similar emails when asking for appointments… no ‘hello’ or ‘goodbye’ or individual names… just come straight to the point then drop out of sight. You can imagine the staff rushing around like busy ants, so you don’t really resent it, but it’s still a little… leaves you feeling like one of those cartoon characters who was walking on rock and is now pedalling in mid-air.
Thinking about it, it was just the ‘activation’ I was engaged in… if I went back, the first session would be there waiting.
Perhaps it’s all one big cryptic puzzle designed to keep me engaged trying to figure it out so that I don’t have time to stress about anything. There was a multiple choice question I didn’t understand at all, and the only way I could dodge it was to pick the most non-committal response. I felt like turning to someone and saying, “Sorry, what do you mean?” Instead, I said it to the empty room.
I should raise that question with them in case it turns out to be something important… or is that typical catastrophic thinking? What significance could a single, vaguely-worded question have? I gave them a vaguely-worded response… fair dos.
Meanwhile, none of this helped the cats with their own issues. They sat miserably at the back door, looking out at the slurping snails. As far as they’re concerned, this type of day shouldn’t be allowed.
I have more trouble with haircuts than going to the dentist. (At least at the dentist you are in a private room! In a hairdressers you are surrounded by odd people milling around, and have to sit straight and position your head according to their dictates).
I was saying to myself “this is a very good haircut but I don’t think I want to come back here ever again;” meanwhile Mum was telling the owner of the salon “Diddums hates haircuts as a rule, but she will come to you,” and he was very chuffed.
The annoying thing about current hair fashions is that there’s no such thing as a fringe any more. So I come away with this long side panel of hair blowing in my eyes, or getting in my mouth every time I sip my coffee, and I can’t help thinking “if I feel the urge to reach for my hair-clip even after leaving the hairdresser, then it’s a Fail (even if it looks nice).”
Watching an old 80s film, I realized it’s the total opposite of 80s fashions, when people had long hair and short spiky fringes. Now they have short hair and long floppy fringes. Young people are determined to prove “we are not our mothers”, but in fact they are exactly the same, as they have hair that is long in one place and short in another. I don’t think it’s ever possible to be different. You may try. You won’t succeed!
I’ve always had a problem with waiting rooms. For years I felt almost embarrassed to say “I’m not worried about the dentist… it’s the waiting room that gets me!” I can’t hear the receptionist’s questions or my name being called… I don’t even like the fact that the receptionist is in or so near to the waiting room, so that everybody else hears our loud conversation better than I do… and if I have to wait a long time, I worry that my name has already been called and I missed it. Just the sort of thing that sends my agoraphobia into overdrive…
There seems to be a vague assumption that the onus is on the staff to make sure I know when I’m called, and that it will all be sorted out by the end of the day… but this underestimates the embarrassment it can can cause, and how worried I get about it beforehand. That sort of anxiety will make me good for nothing during the actual consultation, and it could stop me seeking treatment.
My feeling is that it’s all so unnecessary, especially where audiology clinics are concerned. I’ve only once been in a waiting room that used some kind of visual prompt that it’s your turn… and that belonged to our old family GP back in Edinburgh, 25 years ago! (Why do things go backwards instead of forwards?)
I think there should be one good overall system in use for everybody, as otherwise you do get slip-ups where the nurse doesn’t realize the person in the waiting room is deaf, and goes out to call for that person anyway. Instructing staff “if you see from the notes that she’s deaf, do this other thing” is not enough.
If I had confidence that I’d be able to speak confidentially to the receptionist, and that I would know when it’s my turn to be seen, and that the staff won’t make a mistake and shout out my name anyway, I would be less anxious about visiting any GP, dentist or audiologist. (Or in fact any unit that uses waiting areas, whether medical or not!)
I knew it couldn’t just be me who felt that way. When I looked on the internet years ago, I found nothing of particular interest, but there seems to be a lot on the subject now. The following are a small selection of the links I found:
Sign Health: Why do you keep missing me? … a PDF you might want to Google for… I didn’t link to it as there’s a QuickLink available (long one!) Excerpt: “There are countless anecdotes about deaf people seeing their doctor, invariably receiving a poor service. But until now there have been no figures to support the arguments. This lack of data makes it difficult for deaf people to convince health providers that changes need to be made.” This is worth reading as it goes into a bit more detail… it talks about things that make me think “oh yes… I remember thinking that!”
Recently I’ve frequently got “you’re paranoid!” or “you’re getting a bit worked up” from different people. As I have had several flaps lately — a good example being the Mussel Episode — I stopped to wonder.
We have such a low download limit with our ISP (the very lowest, normally intended just for people who check their emails about twice a day and download occasional software updates) that I have more than once put the two of us over our limit. Every time that happens, I lose access to the internet (get redirected to a finger-wagging page from the ISP) and I feel completely hangdog for the rest of the day. As though I’ve been ordered to go to my corner.
It’s not as if I’ve committed a terrible crime; just got a bit too enthusiastic about choosing birthday gifts on Amazon, uploading photos to my blog or viewing other people’s desktop pictures! But it’s such an unpleasant feeling (and the top-ups too expensive) that we will be moving on from this ISP — and not because they asked us to go (though presumably they would eventually ask us to upgrade).
Still, it gets me that I can feel so bad about something like that… it’s all part of the “getting worked up about nothing.”
I asked Mum if she thought I got too worried about things, and she asked for examples… I deliberately picked something small and far away that I wasn’t actually bothered about! I said I got on a train when I was 19, and a woman said “dinnae fash yersel!” when I started asking how one went about getting off trains again. “That’s normal anxiety,” said Mum.
I suppose so, though I’d much prefer to feel relaxed and in control, realizing that if certain things go wrong (such as missing my station or being refused access to Google) that it isn’t the end of the world. With my severe hearing loss, I would find a missed station more difficult to sort out than most, unless I happened across a good Samaritan, and there are many! All the same…
It makes me think of a documentary we saw yesterday about WI members. Some of those ladies had such hard stories to tell about their lives… it made me think how I’ve really had it easy compared to some. But I was struck by one of the ladies (a survivor of physical and mental abuse) — she said that every individual is convinced of his/her own importance… but none of us are at all important. Anything could happen to us, often through our own mistakes… but it’s not the end of the world. Ultimately (she said) we have to realize all of this, and be kind to ourselves.
With my brain cells fizzing gently (from getting in flap after flap, like wondering whether the Google page keeps morphing because it’s not really a Google page), I insisted on a chocolate cake today in town. Mum said “you’re the one who waves and says ‘no no, not having cake’, so why are you demanding some now?” I said “because it’s a cold and miserable day and I want a treat.”
After all the years I’ve spent in this town, I still feel like I don’t belong here. As I stand on a pavement, the road and buildings slope away in every direction — grey, dusty and characterless. You feel the night waiting beyond the horizon. People stay hidden behind their defences, and in a shop or office, all is distant incomprehension.
Last night I was watching something on TV about three young people attempting the craft of weaving for the first time. One of them was doing spectacularly well; really engaged in it, doing his research on the internet and getting it just right. Then suddenly — just when he was supposed to prove himself in order to win a further opportunity in weaving — he had a slump of depression (he’s bipolar) and felt so unmotivated that he just went away and slept.
Sometimes I think pressure (even a little of it) pushes you into that… you think “I’ve got to do this well, now,” so you turn everything off and disappear.
Have got through a nasty cold and am slowly sorting out books.
Found an old ‘Christian Year’ Birthday Book (printed by Frederick Warne and Co!) that belonged to my great-grandmother Jessie. She got it on her 15th birthday, which is just 8 days away from mine (different year, of course!) She was conscientious about adding family birthdays (and deaths) — my father and his siblings were in the book. Of course their dates of death aren’t marked; she herself was long gone. I was glad to see that, as though it somehow makes them forever young and alive.
I lay awake and thought about ‘Jessie’ and the names she wrote down, kept safe since the late 1880s. Her book was right there in the drawer beside me, a small link to the past — and all of a sudden the dark felt more inhabited and friendly.
I found this discussion on the BBC Ouch! forum about deafness and depression; I particularly liked the messages from Number 23 onwards. And Message 27 is depressing!! Black comedy, if you like.
Things are said there that I’ve thought a lot myself over the years. Even on the internet it’s so obvious that therapists’ advice is geared towards those without disabilities and communication issues. When I saw a cognitive behavioural therapist years ago, I really felt we were not on the same wavelength. She was trying to persuade me nothing was as black as I was painting it in my mind, and I was wondering how black couldn’t be black, and if she even knew what the picture was.
I asked her once if she thought that maybe my anxiety and ‘panic disorder’ (which she’d diagnosed it as at the time) was caused by my deafness, and she said “oh, I don’t know!” in a tone that seemed to say, “well, perhaps, but you don’t have to be deaf to have issues, and let’s not get into that anyway!”
I found myself thinking of that exchange much later, when I read that cognitive behavioural therapists are trained to guide their clients away from the probable causes… we’re supposed to focus on changing our behaviour and the way we look at things. How it all happened in the first place is apparently irrelevant (and, I grant, often impossible to untangle anyway).
I said to Mum recently that a therapist would advise one to go into a difficult situation with the intention of proving that yes, one can handle it perfectly well… but it’s not so simple when that you are deaf and have poor speech, and have to go through the wringer merely to get fish and chips from the local takeaway. Generally you prove to yourself all over again that any two year old could do it better and faster. I don’t see how the fact that one is deaf can be ignored.
Some of those taking part in the discussion thread say that of course we have these anxiety or depression issues — we’re all of us being shaped to fit in that round hole, whether or not we’re round.