Well, i was supposed to have CBT on Monday. I was not well enough to go, so cancelled for the second time in a row. This time, however, i spoke to the psychologist who does it and he asked if i wanted to make another appointment. I said that i felt that the chances of me being well enough at any given time are quite slim and that even when i did feel able, such as the last time i went, i suffered a bad flareup of symptoms and felt very unwell for about a week afterwards, and that i did not think this was a reasonable thing to have to go through. I said that i thought it was better that i don’t hold up his waiting list and waste appointments as i did not feel this was the right time to try to attend CBT… not that i think there will be a better time 
He was very understanding. He said he had had contact from my insurance company (who had ”suggested” i had CBT in the first place) who wanted a written report from him. I had already told him that i was uncomfortable with them and the information they have gathered about me, some of which i felt was not particularly relevant or accurate, so he told them he would have to show me anything he wrote before he sent it. Very nice of him. So after i said i did not think i would be coming back he offered to write a letter to the Insurance company on my behalf and said he will email it to me to check beforehand. I have not had it yet and i hope he does do that. He even asked me what i wanted it to say! I said that if he could back me up that i do not seem well enough to attend and also if he felt comfortable to say that he does not feel i am in dire need of CBT right now, i would be very grateful… he has only seen me for two hours in total and that was just asking me a lot of questions and setting the scene i felt, rather than actually doing CBT… so we will see what his letter says…
Also i did contact the DLS (Disability Law Service) and explained my situation to them, that i felt bullied into CBT and worried what they would “suggest” i undergo next, or that they would stop my payments… i don’t think i should say exactly what they said but they sent me a good email of suggestions of what to do if they do continue to make claiming difficult 
Thanks DLS! I feel more empowered! Thanks also Rachel for sending me the link in response to a previous post on CBT.
I probably should have told him more specifics of how badly attending had affected me last time as it was like i had used up all my cognitive function in one go answering all his questions and spent the following couple of days lying in bed and my brain was in meltdown – random thoughts flew in and out – i couldn’t remember certain things and kept thinking i had forgotten things (i probably had!) and it was all a bit traumatic. Although maybe if i told him that he would think i needed more CBT… sigh! So for now i am released from it, or at least in the process of, i am just waiting for the phone to ring though… the insurance company have not rung me for ages and it has been so nice to be left alone as they were ringing me very often for a while there before the CBT started… i suppose i will have to start screening my calls again… sigh. I always ring them back but sometimes i just am not in the right frame of mind to deal with their stupid questions…
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July 4, 2008 at 5:30 pm
rachelcreative
Well good for you! I know attending the sessions was not easy (and I hadn’t realised quite how bad the reaction had been for you after session) but saying no can be just as hard.
I’m so pleased you got some advice.
I have heard people who have played real hardball say that in such situations as with your insurance company to kick up a fuss and ask them to accept liability for any physical worsening of your health and impact on your life from their actions (like making you go to CBT).
I’m not convinced if it makes them back off because they can’t guarantee it won’t make you more ill, or if it makes them think you’re a crazy woman ;o)
July 4, 2008 at 7:37 pm
ashysheela
yeah, that that is a possibility has come up but i have always agreed to each thing, although have voiced concerns/reservations where i felt i could… Have found it hard to be assertive when i don’t know the effect that could have on payments… Also how do you prove something has had a negative effect on a fluctuating condition that seems unmeasurable? So i don’t think i will be claiming personal injury just yet! The impact of one of their doctors visits was very negative and long term but how can i prove it? (Plus i would not want to talk to him again to confront the issue!) If they continue to stress me out i will have to start writing a diary again i suppose as evidence… boring! So sick of diarying for everything!
Crazily i do not even have a copy of the policy they are operating under as it is my employer’s policy… i have asked for a copy so that may help me find out what i *have* to do and how hard they can make me work to continue claiming…
July 7, 2008 at 1:47 pm
rachelcreative
It’s a constant source of frustration to me that systems for illness and incapacity should be super simple and efficient as that is when you need the most clarity and assistance. It’s such a game.
It’s rubbish that you have to be dealing with the crappy bits of this.
July 7, 2008 at 5:55 pm
ashysheela
It is a game… one that we are not well enough to engage fully with. No email from my CBT guy yet – going to chase him tomorrow… sure some things at least will get sorted soon… i hope!
July 9, 2008 at 6:23 pm
tpe
That all sounds like an abysmal nightmare for you. (Sorry, pep talks are clearly not my strong point.) But deary me, what a thing.
I see (in your previous post about periods) that you were the victim of blog-theft. I’m tempted to do the same thing here and simply cut and paste Rachelcreative’s answers to you – saves time and would also make me seem pretty cool and caring (and articulate, come to think of it) – because, apart from that, I can only really think to say “oh my good God”. And that’s no use to anyone. It’s all I’ve got, sadly.
Except to say that I’m very suspicious of some of the wilder claims made on behalf of CBT. I’ve recently felt bullied into having it myself (for entirely different reasons than you, jut to be clear) and feel deeply uncomfortable with it. I know that it can work, true, but I also know that it is a highly inappropriate response in certain circumstances.
Wishing you well, nevertheless.
Kind regards etc…
TPE
PS. Why not link to the thieving blogger and invite your guests to go and comment there? This would give us a chance to calmly explain how much we totally detest the fact that they are in the business of stealing other people’s belongings. Most people can be shamed. Or, if it comes to it, shot.
July 9, 2008 at 6:27 pm
tpe
Oh dear. I made a typo.
“jut”, of course, should read “just”. Dang.
July 9, 2008 at 6:49 pm
ashysheela
Dear TPE,
Thanks for the pep talk, made me smile! You really are wonderfully (and periodically, it’s understood) English!
well here is the link to the pilferers – they have preserved a link within the text where i usefully (it now seems) linked back to myself so i suppose it is obvious but i still feel it is wrong…
I was wary of highlighting them as it will just mean they get more hits which is presumably what they want… the up side is that they seem to be focussed on medication so as long as i don’t mention any tablets again i should be ok in future!
http://tablets-rx.com/generic-viagra/?p=939
Feel free to annoy the hell out of them
Good luck with CBT, i hope it is of more use to you than expected… If it feels like a negative experience after you try it then stop (if you can)! I don’t see how it can work when people feel bullied into it. I have not faced the aftermath yet (with the insurance company who made me go) but do feel a sense of relief that i took control and don’t have to go back. I tried to make it work for me, despite misgivings, but it was not for me. I hope your experience is more positive in the end!
Ashy
July 11, 2008 at 1:58 pm
tpe
Howdy-doody, Ashy, and thanks for taking the time to respond to my finger-drivel.
Right. Those guys look like total bandits – the blog thief people, I mean. They seem to be grabbing anything and everything that includes a reference to (certain) drugs, just like you said – although it wouldn’t harm my self-esteem if we could all just pretend that I found this out first, okay? Okay. (It’s a total nightmare being male.)
You’re right to think it’s wrong, because it so very obviously is. You’re also right to think that they’ll just be happy to get hits – their revenue, no doubt, comes from ads – so it’s a little hard to know what to do about such a gross violation.
I eventually found a place on their site which allows people to contact them. I’m almost certain they won’t reply, but I did write to ask why it is they are using the written materials of other people without giving any or due credit. These things annoy the hell out of me.
The way to hurt them is to write to the people who pay them – the advertisers – and alert them to what’s going on. Never fails, apparently. That’s for another day, though, as I’m stressed like a loon with house-guests. How come other people take up so much space? They should just stop it, immediately.
I’m still a bit staggered that your insurance company can force you to have CBT. And why CBT, in particular? And how in the name of all that is holy do they have a right to see the results of a private consultation? Yes, I know, I know – they hold all the aces etc and they need to know they’re not being scammed, but still. It’s just plain wrong and nasty.
Seriously, I need to shut up here and quit finger-frothing like a weirdo.
Kind regards from a rain-lashed and thoroughly miserable Ireland….
TPE
July 11, 2008 at 6:23 pm
ashysheela
wow TPE! is that website only interested in info about certain drugs? I had not noticed
What would us women do without you men to keep us “straight” ha ha…
anyway, thank you so much for sending them a message to express unhappiness at their immoral behaviour! I had a look at the charity sponsor myself, maybe i will email them… you have spurred me on to fight the evildoers!
As for CBT, well it’s easier to try to make us change our thought patterns about being ill than actually make us well, it seems.
It’s totally grim and soggy here too
July 17, 2008 at 10:02 am
tpe
Hello again. How are you today? Is this a good day for you, or is it one of the miserable ones? Obviously, I’m hoping it’s one of the (horribly rare?) good days. I see you had your plans (Gay Pride) ruined the other day, so it would be nice if you weren’t feeling as rubbish as you did that day, at least.
Anyway, that’s everything, just dropping by to see how you’re doing. Good point, though, about CBT, and nicely put: it’s easier to try to make us change our thought patterns about being ill than to actually make us well….
Quite. A rather miserable truth, really.
(Don’t let it spoil your Thursday, though. No.)
July 17, 2008 at 2:05 pm
ashysheela
Hi TPE, I am having an ok day, (thanks for asking!) been better, been worse
How about you? I don’t get the impression from your blog that you have a fatigue-like illness… do you? Maybe you know someone who does… I hope not and that you are feeling good!
I have been out of the village TWICE since my grumble blog so really can’t complain as that is very good going for me. Just wish i had not had another form to fill in come in the post today – a deadline to return it by the 29th of this month! They love to make me work you know, even though i say i can’t…
Just watching a “warm, sentimental and engrossing drama” on tv to pass the day and ignore all my paperwork…
Hope your thursday is a cracker!
July 17, 2008 at 4:15 pm
tpe
A “warm, sentimental and engrossing drama”? Hmm. I’m trying to work out what that might be. You wrote your reply at 2.05pm – but I think the time stamp is out by an hour on this blog, which would make it, in fact, 3.05pm (I am a detective, surely?)
A brief glance at the (British) tv schedules tells me, well, nothing. But I’m going to take a guess at “Good Morning, Miss Dove” on Film4. (A former teacher remembers her past pupils – 1955.) Did I win? Did I win? Did I? Did I? I didn’t, did I? Bugger.
No, quite right, I don’t have ME, but my girlfriend (of 18 years) does. Wait – I mean that I’ve been with her for eighteen years, not that she, herself, is eighteen. I’m an insecure creep, most certainly, but not THAT insecure.)
But yes, she’s been diagnosed twice as having ME – first time was when she was seventeen or so and then again in her mid twenties – and it’s been a bit miserable for her, altogether. Since moving to Ireland from Scotland (end of 2004) it has been next to impossible to find a sympathetic doctor. For me, this is just pure ignorance and/or arrogance, nothing more, and it makes me mad. But there we go.
I suppose, given that she (Charlotte) can often remain active for quite long stretches of time before collapsing, that some may view her condition as not being ME. Fair enough, but I should love them to say that to her face in the middle of one of her debilitating bouts of Grade A misery. Plus, she sometimes collapses for a year at a time – so it’s not like a passing fad.
I’m ranting, I can feel it. Oh dear. Change subject, change subject, change subject…..
Do you know the blogger NMJ? She’s got a book out now which you may be interested in reading. No, I’m not her agent (damn), but I have a feeling her book is going to describe aspects of ME quite brilliantly (she is a very good writer). I don’t know how to do links in WordPress, but you can find her at velo-gubbed-legs.blogspot.com.
Even if you don’t get the book, her blog is toptastic.
Yikes. I would normally suggest just forgetting about the form you have to fill in until the day before it is meant to be returned – but this is probably not a good idea for you. You’ll be needing to do it at the first hint of energy and clear-headedness that comes your way, I imagine, otherwise the chance could be gone. Do you have someone to help you? Not just with the form, either, but with everyday things? (I don’t mean your partner, incidentally, because maybe she is out working during the day.)
Or did you scare everyone away with your habit of watching warm, sentimental and engrossing dramas in the middle of the afternoon? I think you might have, you know. Have you considered watching cricket?
Okay, I’ll go.
Glad to hear your okay-ish today, though.
Kind regards etc from a resolutely Autumnal Ireland…
TPE
July 17, 2008 at 4:18 pm
tpe
Just trying to link to NMJ properly. Let’s see…..
July 17, 2008 at 4:19 pm
tpe
Yay me. I simply stagger myself.
July 17, 2008 at 5:32 pm
ashysheela
hi again,
Yes you do win – but the film did not keep my attention long and i drifted to the computer… ahh well, what i needed was distraction and i got it one way or another… cricket would be low on my list though… i am not a sporty type at all, watching people being energetic is just rubbing it in!
Yes i have seen NMJ’s book and have been meaning to buy it. Don’t tend to read many books about living with ME but when i do they are usually good. Sorry to hear that Charlotte is finding it hard to get any support, my sister has ME too, since she was 11 (she is now 28) and has had long periods of living a fairly normal life, but it just keeps coming back to get her. It is currently pretty bad though and has been for quite some time. I have had a period of milder illness and although more is possible (i worked part-time), life is still hard to juggle as more is expected of you, people really can’t see your limitations at all and it is also easier to pretend you are ok for too long and not look after yourself i think.
Anyway, best wishes to her.
Yes my partner will help with the form if i am not managing it by next week. She is already printing and photcopying all the required bits and bobs for me
I just can’t face it yet, but strictly speaking could have made a start on it today… too busy sorting dla stuff out this week, my brain can’t cope with two things at once any more!
you didn’t say if you are having a good day?
July 17, 2008 at 5:36 pm
ashysheela
she is 28, not 2 and cool in shades!
October 12, 2008 at 1:19 pm
tpe
No, she is 2 and cool in shades. The cat’s out the bag, blogger, so there’s little to be gained from back-pedalling now. I’ve already started spreading rumours, in fact, so the issue is pretty much sealed.
Hello. I can’t believe it’s taken me so long to get back to you – sorry about that. I think I was probably just stunned and staggered to find a blogger with curiosity and good manners. You even asked me how I was doing, for pity’s sake. Jeez.
It’s difficult to go back in time and answer that question accurately, right enough, although – based on my knowledge of self and years of experience – I’d say it is highly likely that I was glum and disconsolate on the day that you asked. A good day, then, by normal standards.
NMJ’s book – yes, I see your point. However, the transcending love story at the heart of the novel is something worth reading all by itself.
Right so, I need to try to make the leap into a more recent post of yours. I often creep people out by becoming stuck in a particular topic thread and it makes them feel a bit cornered and trapped. Give me a few days, then, and I should land somewhere in your future. That’s the theory, in any event.
In the meantime, though, sorry again for dobbing about and taking ages to respond and I hope that all is as well as can be in your particular corner of this most beautiful world.
Toodle-pip and tally-ho etc….
TPE