View Full Version : What to do!
08-17-2007, 11:06 PM
I am agoraphobic, only being able to walk my dog on a very local field. Apart from that I cant go to shops on my own to get the food, I cant travel further than my own town in my car. I get good days and very bad. I suffer from panic attacks more when Im out but sometimes indoors too.
Ive had this for 4 years now. At the present time I am with a community access nurse as the nurse that was with me before a CPN said I was ready for the change.
I have been terrified ever since as this new nurse insists that I go out. I dread her coming yet know its for the best. Sometimes I just want to curl up and die before she comes. I somehow get through the ordeal and she says the obvious "well done".
Now I am no where near ready for work but my doctor has now told me that he wont be able to give me sick notes anymore. I have no idea how I am going to live because its the only income I get. I dont think my doctor knows how bad I really am and how terrified I am of working.
I feel I am being forced into a situation that I cant handle. If I go on job seekers allowence, then I would have to attend interviews etc. I just dont feel ready to do that. Im scared to death.
My benefits have already stopped once about 4 months ago and I didnt have any money from anyone at all for 6 months while it was appealling. The appeal failed and my CPN managed to get me back on benefits again. They didnt backdate the benefit though as they said 6 months had past. Im terrified of that happening again let alone the doctor ending it all together.
All this just adds to the anxiety and is making me ill.
Hope someone can help.
<span style='color:red'>Hiya, Genie</span>
<span style='color:blue'>As someone who has also in the past fallen foul of the UK benefits system, and the complete lack of understanding from a GP, I really feel for you. :(
With something like this, I would say that only you can really judge if you are fit for work. If someone else has it in mind that all you need to do is "get a grip", "face the fear", etc, etc (you probably know the full repertoire of possibly well-meaning, but still highly irritating, bullshit?) and you don't feel that to be true, then this kind of approach to your problems is just going to be completely futile, and dangerously counterproductive, no?
A lot of people, even professionals, don't seem to have any grasp of the difference between a specific phobia (like a fear of spiders), which can be treated with straightforward "exposure", and a more generalised phobia like agoraphobia, which is often a "side effect" of a deeper problem.
I guess everyone's agoraphobia is different and specific to that individual, but the general rule the doctors are supposed to follow is to treat it with a combined approach of medication to reduce or manage the stress and anxiety; counselling to learn to manage "situations" (quite possibly also involving "exposure"); and, where necessary, psychotherapy.
There are two possibilities here, I suspect: either you are "hiding" how bad you feel from your doctor and nurse (don't take offence, please - we all do this: try to put a brave face on things and not tell them just how truly bad we feel), or else they are just plain stupid, and you need to change to another doctor.
You don't mention whether you are also suffering from depression (my guess would be Yes), nor do you say anything about just exactly what other treatment you've received over the last four years. Can you give a little more detail about that? :)
Whatever your problems, Genie, you still have the right to share in the decision-making processes of your own medical treatment, so if I were you I would be very firm with your nurse and insist she explain just exactly why she feels that you should be following this course of "exposure".
Anyway, for the moment, all I can say is you have my sympathy and I hope you'll post again soon with some more detail about your medical history, and tell us too just exactly what your doctor said when he informed you he won't sign you off any longer? As you know, no sick note, no benefit.
Do not depair - there is a way through this if you just hold firm. :) All the best, Genie.
I live in the US so I really don't know much about how benifits work over in the UK but I do know your fear. I too am agoragobic. I don't leave the house at all unles I have to go to a doctor's appointment. Those days are a big project. My husband has to take me and I have load up on med's just to go.
I feel for your stituation. It is unfair that not only must you suffer with this illness but you have the add stress of how you are going to survive.
As difficult as it is perhaps there are some programs or agnecies in your area that will help you fight all of this. There are lots of members that are from the UK on this site so slip into chat on of these days and maybe one of them will have some good advice for you.
I wish you luck and hope things work out for you.
08-18-2007, 08:05 PM
Hello again and thank you both for replying and being so sympathetic.
Gord, I am on beta blockers and blood pressure pills. I very rarely visit my doctor as like Emma I get all nervous and axious over visits. He wants to see me for an assessment during next week. He told me on the phone that he is finding it hard to write me sick notes and for the past 3 months has been giving me monthly ones which I then have to deliver to the job center. I hate doing this and always have to brace myself just for a simple event like delivering it to the reception. I dont know what he will say at the assessment and I basically dont know what to say to him anymore. Im exhausted. He doesnt see me every day, what Im like etc. Im in the surgery for what 2-3 mins - time for nothing basically. So its hard to have a good long chat with him.
He never told me about CPNs and what they did. I found out from the council that they actually existed and told the doctor to refer me to one. I was and had one on my doorstep within a week. She listened initially and then just insisted on taking me out...this exposure thing. Kept on taking me for coffee at the local supermarket. Told me to breathe deeply and that I was doing well. Presumed she told the doctor that I was fine and coped well....little did she know what I felt like inside. As you said, you keep it all in dont you....just want to rush back home and sleep or feel comfortable again.
She later transferred me to a community access worker that wants to get me into voluntary work etc. I always feel sick and get the runs when shes about to arrive. I feel very sweaty and dizzy (the usual), when she comes, I just try my hardest to make excuses up not to go but she wont have any of it and forces me. So I go and so far Ive come home in one piece lol. It all seems so surreal out there. I feel like Im in some other world. I will try my hardest to go along with her though as I so want to get over this awful illness.
I had a lot of trauma 4 years ago. I had the sack from work for having panic attacks and running out for air. 6 months previous to taking this job I had a hysterectomy. My mother looked after me during that time as mums do. When I got the sack from this job (it was the 3 months probation period, after which they said I couldnt handle the job!) it was christmas time. 4 months later my mother told me she had cancer. She called on me and said she was being sick and her head really hurt and could I go down to see her. I went straight away and she was in an awful state. I told her to call the doc but she didnt want to. I did anyway and the doctor told me that she had breast cancer which she told noone about and had had it for 3 years. It had spread to her brain (little did I know). I told her she had to come and live with me and I wouldnt leave her at her house. I piled her in the car, duvet and all...she was sick all the way, I didnt get to my house and took a detour to the hospital. Upon arrival she was whisked away for a CT scan..they put her on morphine and a month later she died. It was all so sudden for me and such a huge loss as she was like a serrogate husband to me as my husband went off with another woman 12 years ago and left me with two little kiddies who are now adults.
So you can basically see what triggered the anxiety - a combination of bullying at work, followed by the death of my beloved mother. I shut myself away in a bubble and didnt want to come out for a long time. I had panics all the time along with nightmares etc. I often felt very dizzy or faint so avoided going out.
The worst for me is enclosed spaces. Feeling shut in. I cant bare supermarket queues and when I go in shops its always with my son or daughter. If I do ever go in on my own, I get a couple of things and then pace up and down like an angry lion not joining the queues...I get so desperate about the situation. Sometimes I get one of the supervisors to put me through and tell her how I feel. Other times I just drop things and go. I get home and think, I so needed bread or milk or whatever and get angry that I couldnt do it.
I would love to get to the beach as I live inland. Its far to far away for me to tackle but I dream of sitting on the sand watching the waves. The summer has nearly gone now and again, Ive done nothing!
I feel I dont know what real life is anymore. Im trapped in my own little safe world.
Things that most people would find enjoyable I dread. Cinema, going out for meals etc. (I can often see that juicy steak just waiting)!
Thank god I have a dog as I love her to bits and she takes me for a walk every day. I absorb the smells, the trees, the scenery - its so nice just to get out and Im often alone or maybe one or two other dog walkers and its a real sense of freedom.
Crowded places and indoor places are what I fear. Interviews, meeting with my daughters college tutors, buying things like carpets where they keep you talking.
You can imagine what my carpets are like lol.
So thats my story...I dread the docs appointment but Ill report back on what he has to say.
Thank you for listening and sorry its long winded.
I have been in chat before Emma...they are a lovely bunch of people.
Many thanks and hugs
08-18-2007, 09:43 PM
Wow Genie, you sure have been put through the mill. I am so sorry for the loss of your mother.
I can completely see where youre coming from......I am presently due to attend my appeal hearing because the doctor for the dwp determined that i was fit for work, which is a joke because i am agoraphobic. its like they just dont get it, how serious agoraphobia and the impact it can have on someones life. i look at simple things like being able to travel to a shopping centre as a major thing now. i feel like my brain has been rewired and i am an alien experiencing 'life' for the first time...........silly things like walking (far), going out for a drink, going to the beach (i am sooooooo with you on that one girl!!), things people take for granted seem like major events for me.
i have forced myself to take it one step at a time. the days when i wake up feeling invincible (heh!) i will take myself out of the house and set a target; get a bus, walk to shopping centre, go to supermarket etc....thats the only way that i can do it. ihave had cbt and it helped alittle. i think i have become my own therapist as i think once the drs have given you antidepressants, valium and cbt then it is basically all over as there isnt anything else to try.
you can post your certificates in if it is a problem.....always take a photocopy first though.....
your doctor is not being very understanding of your condition,,,,if there is more than one dr at your surgery i would go and see another (more empathic) dr who will support you whilst you try to get better.
i agree with everything that has been said before. once you start to take control of your life then perhaps nurse ratchett (!) will ease up. maybe try and explain to her that the approach she is taking with you makes you even more anxious. work with her to set your plan of action, and even though it is good to have someone give you the push you need.....it has to be done a certain way.
i wish you well.
<span style='color:red'>Hey, Genie</span>
<span style='color:blue'>Thanks for the "further details". You really, really have been through the wringer! You poor thing. :( :( :(
OK. The useless husband, the hysterectomy, the lousy bastards at work, and your mother dying so suddenly and tragically, the stupid and ignorant treatment you've been getting from your doctor and nurses........... Not really surpising that you are now reeling from it all, is it? :(
The assessment next week though is a fantastic opportunity for you to begin to turn all this around again, Genie. :) Yes, of course you're dreading it, but if you plan things right and summon up every ounce of determination you really can get yourself back on track again now.
First of all, make a list - actually on paper - and take it with you to the doctor's. Have it in your hand when you go in to see him and take control of the session with him from the word Go. Tell him that you want to use this opportunity to explain exactly how you have been feeling, and how ill you are. (Have you in fact ever told him your "history" as you've told it to us here?)
What you are actually suffering from isn't Agoraphobia, Genie. That's just a common by-product of the chronic anxiety and depression which is what they should have diagnosed you with. If they and you can combine to tackle this on a broad front, with medication (anti-depressants, perhaps, as well as the beta blockers?), with therapy and proper counselling, then you have a good chance, I would say, of putting the pieces of your life back together again and, yes, one day getting back to work.
Make a list of questions you want to ask the doctor, individual things you want to tell him, but when it comes to telling him how you feel tell him from your heart, not from a list, OK? You have to get through to the guy just how bloody ill you feel. Let it out, Genie!
As for the 2-3 minutes aspect of doctor's appointments, forget it! Once you get in there, you just sit tight until you are ready to get up and leave, you hear? OK, it'll make the other patients have to wait even longer. Tough! You are entitled, legally and morally, to a consultation that satisfies YOU, not his bloody NHS targets!!!
If you're on beta-blockers, you presumably get repeat prescriptions? You may find that, if you are put on anti-depressants as well (OK, I'm not a doctor but that would still be my strong suggestion to you), you will NOT be able to get those on Repeat, so you'll have to see the doctor every two months or so. If you have trouble doing this, especially with this doctor, change doctors. But go anyway.
Is there anyone who could maybe pop along with you? At least the first time or two? Having someone with you for your "assessment" would be a very good idea if you can arrange it. Moral support. :)
The nurse thing...... I'm afraid I honestly don't see what help they are being for you. They are clearly following some prescribed set of procedures that are just not fitting in with your needs. Can I suggest that you sit the nurse down - in your home - the next time they come round and have a proper chat with them too about your treatment, how it is supposed to be helping, why it isn't, and do they honestly know what they are doing to you with this robotic-type Plan they are following?
Take control, Genie. It's your treatment, your life, we're talking about here. If at the end of your chat with them you don't feel confident that they are going to do you any good, ditch them.
Walking your dog every day is a fantastically healthy thing to do, not just physically but mentally too. I don't know what sort of place you live, but can you take her to different places, as and when you feel happier about mingling with other people, somewhere a little busier and where you might be able to chat a little with other dog owners, perhaps? That can be a Safe and comfortable way to gradually increase your "exposure" to Places With People.
Carpets? Pah! Who cares? LOL You can sort yourself out some new ones, as a reward as well, when you are feeling better again!
Shopping. Yes, more important. Can you shop online where you are? Sainsbury's, Tesco, etc, are very good for that and I use them now when I can't face the walk into "town" or the hustle and bustle of the supermarket. But I also have a small, local shop nearby, within five minutes' walking distance, nice and safe, for picking up small amounts of stuff like milk, bread, cat food, etc, in between larger "shops". Anything like that near where you live?
That can also help acclimatise you to "going out", for short, comfortable and safe journeys. Try and build up a sense of small, even trivial, accomplishments like that. Walking the dog every day is one. If you are careful to pick easy and safe "expeditions" you can add to these, little by little, and lose that awful sense of "failure" that haunts us when we can't behave "normally". (Usually when we try too hard, or aim too high, so that it all just reinforces our sense of failure and frustration.)
If you are on Incapacity Benefit, or means-tested Income Support/Sickness Benefit, you eventually don't have to return medcerts at all, just attend a DWP/DSS medical once a year, usually. The "key", as you already know, is to make sure your GP understands how ill you are in the first place! This is your first Mission and, next week, you will sort that out once and for all. Oh yes you will! :)
Voluntary work could be very good for you, very therapeutic -- eventually!!! But only when you are ready, and when it will actually benefit you, rather then make you feel even worse. Same goes for part-time and eventually full-time work. When you are ready.
Sorry this has all been so long-winded, Genie. You know what you have to do. Be firm, be determined, be assertive, and stick up for your rights!
Go to it, girl!!!
<span style='color:purple'>PS: Let us know how it went, OK? :)</span>
10-02-2007, 10:15 AM
Emma, Genie and everyone,
I'm sorry for all your situations and I can completely relate. I have had a "relationship" with agoraphobia for the past 13 years or so.
But hopefully I can encourage you guys by telling you that you can improve your quality of life and don't have to be held hostage.
About five years ago I suffered a relapse, after about three years of living a very normal life. I couldn't sleep, couldn't eat, and I couldn't go anywhere without having a panic attack. I couldn't go to work without loading up on meds. I was in total despair, committed myself twice to the local mental health facility, and didn't see a way out.
Somehow, I got the strength to start entering anxiety-producing situations and have improved quite a bit.
I'm a freelance writer and I referee sporting events. I used to be an editor but sitting in a newsroom full of people made me feel trapped and led to panic attacks, embarrassment, etc.
Lately I've been doing exposures on my own and with the encouragement of my therapist to overcome my agoraphobia and live an unrestricted life where I can do what I want.
I've been going into the public library at the busiest times, sitting at a computer for 30-60 minutes with many people around. And it's working. I find that my anxiety is quite high when I first sit down, but then it slowly abates until I'm actually disappointed when it's time to get up!
I plan to do more of these types of exposures until I realize you don't have to be scared! Barber shop, bus, taxi, subway, planes, sometimes restaurants are situations for this. Oh, and jury duty!
Keep up hope everybody, you can get back your life!
genie honey I SO know how you are feeling and totally know where you are coming from. you can have a docs appointment over the phone by the way and if u are anything like me you will forget what to say to the docs and just downplay your symptoms. . . well, before you speak to him/her wite down everything you want to say and then you wont forget. If they wont let you have a telephone aptmnt then if you ask they will give you a small room of your own to sit in whilst you wait to see the doc- at least then you wont have to be in the busy waiting room. By this time you/ll prob feel so nervous you cant talk so just give the doc your notes. This ALWAYS ALWAYS helps me and you can really get your point across by writing it down as no one can interrupt, lol. Is there anyone who looks after you? Because they and you can apply for living disability allowance. As long as you tell someone how bad you are feeling, you WILL be entitled to it. also, are you on any anti deps? beta blockers and diazepam will calm you down but they are only meant for the short-term. You need to deal with the underlying problems first, sounds as though you have depression so what about some help for that too? I know it's hell going thru this and it feels as tho no one understands but I hope this helps a wee bit? hugs xx
Hi genie, first thing to do is to let your doctor know exactly how your feeling and the intense panic your having.Tell them you dont feel the nurse is helping but making you worse and that just getting to the docs is really making you anxious. I was just like you and in the end i had to get the doc out because i thought i was dying,luckily my doc was good and knew how bad i was.
you are entitled to benefit so long as your ill and the doc will keep giving them so long as they know how your feeling. I dont have to give sicknotes anymore. i am seeing a psychiatrist and they just write to him to ask how my situation is.
Its hard like you were saying if someone starts talking to you and you just want to run away.My neighbour saw me the other day and because its a rare sight they came over ,my heart was racing and i made my excuses and ended the convo because my anxiety got the better of me again.
Get the doc out or ask for a telephone consultation.
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