Into the system…

blogging, work, mental health, therapy, disability, benefits and more…

Posts Tagged ‘medical

Recovery, Scoring and ESA…

with 8 comments

It’s been a strange week really. I seem to have spent the week being confronted with the fact I’m still a lot more ill than I thought I was.

On Wednesday I had an appointment with Dr B. He’s another GP at my local practice and as Dr N is on holiday for two weeks I had to make do with him. He’s okay, but a little brisk. Every time I’ve seen him he’s made me do a PHQ9 form to assess my levels of depression. It’s similar to a BDI I guess, but with fewer questions and less detail. My score was in the twenties (out of 27), putting me in the severely depressed category. I knew I was still depressed but I’d kinda expected it to have moved into the moderately severe category by now. I do feel better than I did back in February. The depression is less absolute, but I can’t deny that I still think of death and suicide every day, I’m still not sleeping and I still feel pretty tired and down.

For curiosity’s sake I did a BDI as well. I ended up doing it twice as I find it so difficult to decide between answers. My pessimistic score (choosing the worse option if I couldn’t decide) was well over 50. My optimistic score (choosing the better option) was about 45. 30+ is classed as severe depression so it’s a pretty similar result to the PHQ9. It’s a vast improvement on the 60+ (out of 63!) I was scoring in February. I racked up one of the highest scores ever seen at The Priory back then, which is pretty scary really. The improvement is not enough though. How can this be recovery if I’m still in the severely ill category?

I don’t know if I am really severely depressed though, even if my scores say I am. I have been depressed for so much of my life I’m not sure if my results are skewed. I expect even when I’m what I’d describe as well, I’d still be scoring a mild depression score at least.

I was talking about this with a medic friend last night. We were talking about the GPs in the village and I mentioned I’d seen Dr B. She asked me what he was like and I basically said he was okay, but he asks me to do the PHQ9 whenever I see him. She said that GPs are obliged to demonstrate they are giving “adequate monitoring” to depression patients and the PHQ9 counts towards this. It’s interesting as I don’t remember ever doing one with Dr N. I guess he prefers to give adequate monitoring with actually asking me how I am, rather than getting me to select ticky boxes.

I mentioned my scores and how I wasn’t sure how accurate they were. She suggested that sometimes the scores can be a little skewed by insight and they often don’t reflect how well someone is functioning, which seems fair enough I guess. She said I’m clearly functioning a lot better than my scores suggest, which I think is true, but I guess that comes with years of practice in hiding things. I function in autopilot, hiding the thoughts, but the thoughts are still there.

To add further doubts to my idea of recovery I got a letter from the ESA decision maker yesterday. They are finally processing my application under the youth rules and the decision maker has sent the sheet explaining how much I will receive. Looking at it, I’m being paid the amount pertaining to the Support Group. I presume this means they have my medical result and not only have I passed, but I am deemed too unwell to even contemplate work and thus have been placed in the Support Group. This is a big surprise. I had worried so much that I wouldn’t even pass the medical, let alone be placed in the Support Group. I haven’t received the letter confirming my medical result yet, so I wouldn’t be surprised if this is wrong, but it shouldn’t be. I will be interested to see what score I actually received. Another set of points telling me how ill I am.

I don’t know how I feel about being in the Support Group though. In a way it is positive. It means I don’t need to do the pointless Pathways to Work interviews and I also get a little more money, which of course is good. It means there is no pressure to try and get back to work before I am ready. I will not be bullied by the DWP to do so.

At the same time though I can’t help but feel disappointed. I feel like I’ve been written off. I am too ill and disabled to even consider working. That’s something I can’t handle and really don’t want to admit. I want to get back to work and I want that to be something achievable in the near future. It makes me feel like this is all pointless. I want to be recovering and this makes me wonder if I really am. I had felt I was making progress, but that progress is clearly not enough. This is all just fuelling the “fuck it, this isn’t worth it” thoughts. I don’t want this.

I’m a little worried too and I almost feel guilty. I wonder whether this is the right decision. I kinda feel like I have cheated the system because I didn’t expect to pass the medical. I know how notorious these medicals are. I know that hardly anyone passes, let alone gets placed in the Support Group. I wonder why I have got through when so many others haven’t? Am I really that bad? I know I can be in denial and I guess in a way these doubts show that, but I am still unsure. It just feels a little wrong.

I wonder if this process is designed to make you feel guilty? There is such a stigma against incapacity benefits, that you feel awful to be claiming them, yet if you are entitled to, it would be stupid not to. There is so much attention paid to people that cheat the system that genuine claimants worry they will be tarred with the same brush. I had no intention of cheating the system and I didn’t do anything to do so. If anything I down played how bad things were. There was no exaggeration, yet I feel like I have cheated. Surely this is wrong? Surely I should just be glad that the right decision has been made? Yet the doctors at Atos have such a bad reputation I even question a positive decision.

ESA Medical…

with 9 comments

I know I’m updating a lot all of a sudden, but I guess there are things I want to document this week. My talkative mood is probably helping too.

I made it to my medical this afternoon. I am so glad it is over.

I was all over the place during the interview. The doctor kept asking the same things over and over again and it was tiresome. My head was spinning, thoughts racing, agitation brewing. I kept forgetting what I had just said and found myself getting more and more worked up. I couldn’t keep still from the agitation. It didn’t help that she wasn’t following things, but I don’t know if that was me talking too fast or her being a bit slow. She kept mixing my doctors up (I know it’s complicated. I still have 2 psychiatrists!) which was getting really confusing.

She didn’t seem to ask me much about what I can and can’t do. She did ask if I got up, dressed etc (yes, with bullying from my bloke). She asked me if I went anywhere (yes, if someone takes me – I mentioned Creative Remedies). She asked me if I saw friends and socialised (sometimes). She asked about driving (no, not since October 2008).

We talked a little about my overdose in February and what happened afterwards. We talked about ECT. I told her when I’d been in hospital. We talked about my current care – The Priory and transfer to NHS, who does what. She asked me a million times if my doctors knew what I was telling her and who was most up to date with everything. I didn’t know why she was asking that so much. Maybe so she knows whether to trust any information she gets from them or so she could check up on what I was saying?

She kept asking me about suicidal thoughts. She wanted to know why I hadn’t tried again if I still experience the thoughts. She asked me literally 30 times if I had any active plans, maybe even more. She seemed quite concerned when I was honest about the extent of my thoughts, even though I have no real means or firm intention to act at the moment.

I was forced to talk about anger and violence. I couldn’t deny that it has been a problem of late, but I didn’t want to be seen as “dangerous”. I felt so uncomfortable talking about it.

We talked about mood. I found it hard to convey what it is really like. I told her about the current agitation and how this is a fairly new development. She suggested the agitation could have been caused by anxiety about the appointment. I didn’t think it was and denied it at the time, but since I’ve thought about it some more I think it may well have contributed. I really was all over the place whilst I was in there and anxiety must have been exacerbating the situation. I tried to describe the aching, dull, flat, numbing depression that has lingered on and off for ages. I tried to describe the mixed agitated depression that is often a problem. I don’t think I succeeded on any account.

I mentioned that my partner had given up his job to care for me and she asked me about this. Is he with me all the time? How often does he leave me on my own? Who does what in the house? Do I ever go out on my own? etc. etc.

When we went over my meds, she seemed surprised that I am taking melatonin and even asked if it’s a hospital-only prescription. Considering melatonin can be bought over the counter in the US, it does make you wonder why it is so reluctantly used over here. The CMHT seemed surprised too.

At one point towards the end, she left the office to go ask her colleague something and I couldn’t help but burst into tears. I’d been holding myself together up until then, but the stress of it all tipped me over the edge. I don’t know what it was as I barely ever cry these days. Girlie hormones probably aren’t helping at the moment, but even still it seemed ludicrous. Unfortunately she came back in whilst I was trying to pull myself together and then asked me a million questions about why I was crying. I was worried she would think I was putting it on for effect or something. I genuinely couldn’t help it, but was so embarrassed and paranoid about it.

Although she asked me a million questions I don’t know if she has got anywhere near enough information. Most of the stuff didn’t seem to be very relevant to whether or not I can work. Maybe she was just nosy? I guess that’s her job.

I cannot convey how erratic the whole appointment was. Questions were being fired in all directions and I was so mixed up I couldn’t answer her. My sentences were blurring into one. I was jabbering on and on and going off on tangents. I didn’t say half the things I should have. I was not clear at all. I’ve been going over things in my head since, trying to make sense of it all. Trying to work out her intentions and what she was thinking and asking. I know I should just forget about it and wait for the results, but my head is just looking for things to think about.

One thing I have noted is the clear effect of stress. I was anxious and stressed by the situation and I could not deal with it at all. I was turned into a whirlwind of agitated confusion. I’m just thinking about work and similar situations where I have to answer questions and think about what I’m saying. Conference calls for example. There is no way I can handle one at the moment. It’s okay doing that with a doctor that is trained to deal with it, but it is not okay to talk like a madwoman in front of your boss.

In some ways my inability to deal with the situation may stand in my favour. I suspect now I probably came across quite mad. After all, I need her to think I am too ill to work. The problem is, I think I may have come across *too* mad. I was incapable of answering her questions and I’m worried I may have messed up in some way. I’m worried I didn’t answer things clearly enough or that I missed things out. I am paranoid that she was trying to catch me out. I’m really worried she will think I was putting it on or making things up. I wasn’t, but I wasn’t “myself” either and that could be problematic.

Afterwards I was tired and didn’t really want to do anything. The session took it out of me and I needed processing time. Kinda like therapy actually. I guess it was similar in that I had to talk a lot about how I was feeling and what has happened.

Unfortunately I wasn’t really given that processing time as my bloke wanted me to do stuff. He forced me to clean my car, which took ages at it was filthy. As I’m not driving at the moment my lovely little car spends most of its time sat on the drive. It has been sat still so long that green slime was growing on all the window seals. Not good. It’s looking better now, but there are still bits that aren’t quite there.

My thoughts are still racing. I walked the dog this evening and I thought that would help calm me down but it hasn’t. I was distracted thinking about the medical, work, suicide, random pointless stuff, everything. I have music spinning around in my head on top of everything else. The “We buy any car” advert is driving me mad… we buy any car, we buy any car, any, any, any, any, we buy any car… Make it stop, please!!

I suspect I won’t be updating quite so much in the next few days. Nothing is happening. We are taking the dog to a breed show on Sunday, but that is all I can think of. I will see Dr N sometime at the end of next week. I have Creative Remedies too, but nothing unusual or exciting coming up.

Mad Men…

with 7 comments

Again it has been 10 days since I last wrote. I don’t know where the days have gone.

I saw Dr N last Thursday. Just a routine appointment to pick up my scripts, but it was good to talk. He asked the usual questions. Mood, suicidal thoughts, self harm etc. He seemed concerned. More so than in recent appointments.

He pointed out that he could see my scalp was in a bad state. As well as the trich, I also struggle with skin picking or Dermatillomania to give it the technical name. My scalp gets the worst of it. Every day, usually at night, I pick and scratch at my head until it bleeds. It’s covered in terrible wounds, some a few centimetres across. My hair hides the worst of it, but it’s got so bad that it can be seen at the moment. It’s always worst when I’m not sleeping well as I tend to lie awake scratching my head to distract myself from the insomnia.

I have done it for years, longer than the hair pulling even. I think it started when I had chicken pox as a child and I would itch my head. I was maybe 8 or 9? I can’t really remember.

I was shocked that Dr N noticed and mentioned it. I’d confessed it to him a long while ago, but he had never brought it up before. I tried to change the subject pretty quickly and felt uncomfortable that he had seen.

Both the skin picking and hair pulling make the hairdressers a nightmare. My hair is thin in places and there are bits where it is really short where I’ve damaged the scalp so badly it doesn’t grow properly. The scars and cuts are awful and would make most hairdressers flinch. I’ve been asked what has happened so many times and I don’t like making up lies, but I’m too ashamed to tell the truth. One hairdresser even insisted on putting on gloves when she saw the wounds, too afraid to touch them. I last had my hair cut when I was in The Priory, knowing that the hairdresser there would be understanding. I often go over 6 months between a hair cut and it’s been a year before. I try and avoid it as much as possible, even if that means my hair looks rubbish and gets far longer than I’d like. My hair really needs cutting, but I just can’t face it.

Other than the trip to the GP, very little has happened. I’ve spent lots of time watching back to back episodes of Mad Men. If you haven’t seen it, it’s an American TV series about advertising executives during the 1960s. Over here it has been shown on BBC Four, but that doesn’t mean it’s dull and serious! I loved it the first time round, but I watched a lot of it whilst I was in The Priory and ECT has erased most of it from my memory. Watching it again has been a little weird as it brings up memories of those times. I started watching it again because I saw that Series 3 has started in the US now. Will be good to have more to watch. It kills a few hours and takes me away from this world for a little while.

In other news, my bloke may be going back to work a little part time. He left his job to care for me since I came out of The Priory last May. His replacement has quit suddenly, so his old employer have asked if he can do a few hours until they can find someone else. He went in on Tuesday morning, but hasn’t been in again yet.

For me, this is quite exciting. I feel that I am getting a little independance back, being left alone for a few hours. I miss the time I got to myself when he was at work. It is hard being together 24/7.

It is a challenge though. I am still fighting the thoughts and the time alone makes them harder to ignore. It feels like tempting the devil. The monster tells me that “you can do it now, you know you want to”. Over the past few months I’ve had little opportunity to act on my suicidal thoughts. These few hours alone change that and I know there is a risk. My bloke worries about it and I don’t want him to, but I know his worries are justified. I wish I could give him a 100% guarantee that it won’t happen, but I don’t think I can. I am in control to a point and will fight as much as I can, but I can’t guarantee that I will win. The thoughts are intrusive and often impulsive and I know I could act on them before I even think about it. They can spiral out of control and it can be hard to stop yourself when you get to a point. I know I need to hit the panic button before things get that far. I’ve told him I will, but I can’t even guarantee that.

Despite the risk, I still want him to go. I felt bad that he left his job for me as it is. I want him to be able to work again. I can’t be watched 24/7 forever. I am going to have to take this step eventually and it might as well be now. I could be waiting the rest of my life if I waited for the thoughts to go away. I don’t want to let the thoughts win. If he stays at home with me I am doing that. I am letting the thoughts control my life.

Generally I’ve been pretty low over the past few weeks. I’ve been lower, but not much lower than this. I am carrying on, because I don’t know what else to do, but it’s a struggle. Most of the time I just feel so empty and numb. There are still a few better moments, but less than there were a month ago and the average score is down. There are still worse moments too. Fits of rage, agitiation, arguments. There’s this little bubbling pot and occasionally it boils over.

I am disappointed that improvement has stalled. It feels like I am failing. Maybe I’m not trying hard enough to get better. Maybe I am just stuck in depression. There had been seeds of hope, but I am not sure they will propagate. I don’t want to give up on the Lamotrigine as it has been far better than anything else I’ve tried, but it’s just not doing enough. It seems I am heading into a long period of mind-numbingly dull depression, with only the occasional painful period of agitiation thrown in to liven things up. I guess I am already there and I don’t see any way out yet. I don’t know what all this means. I guess I will have to talk to Dr G when she’s back from holiday and see what her thoughts are. I suspect she may eventually give in and resort to the Lithium. She’s threatened it often enough.

I don’t have all that much coming up to look forward to.

Like Seaneen, on Monday I have someone turning up to interview me for the Cardiff and Birmingham Universities’ Bipolar Disorder study. I am a little scared about going over everything and hope it won’t make my mood worse. I feel forewarned having read Seaneen’s post, so it may be a little easier, but it’s true that it isn’t fun for anyone reliving your worst moments. I do think it will be interesting though and I definitely want to support research where I can so hopefully it will be okay.

I see the chocolate teapot again on Friday 11th. She’s actually done some stuff at last. I finally got the referral through for the ALERT service (Out of hours telephone support). They haven’t called me to give me the number yet so I can’t use it, but at least she’s contacted them. I also got the dates through for the Creative Remedies groups. I start on 16th September. There’s a performing arts group and a visual arts group, both lasting 2 hours a week, so that will give me something to do.

I’ve also got a wedding to go to on the 12th, my NHS psych appointment on 22nd and an ESA medical on the 24th. I’m really dreading the latter. I am scared they are going to tell me I’m not ill, I’m just making it all up and I should go back to work. I’m scared they will think I’m a fraud. I did the questionnaire really quickly and sloppily as I just wanted it over and I’m worried now that I didn’t say enough. I have read so many horror stories lately that I am quite worried, but I just hope I can get through it. I am claiming under the youth rules as I haven’t paid enough NI and can’t claim income-related due to my bloke’s savings. Unfortunately they didn’t take the youth rules into account at first and rejected me, so I’m having to appeal. Usually you only get a medical after you have been claiming for 3 months and although it is over 3 months since I applied I haven’t been paid a penny yet due to the appeal. I just hope it gets sorted out soon. Benefits are a nightmare. I don’t see how anyone gets away with claiming when they are not entitled. It seems that most people who are entitled can’t even get them.

Anyway, enough for now. If I posted more often they wouldn’t be such mammoth posts. I shall try.