Into the system…

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Posts Tagged ‘disabled

Camping and Coping…

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So when I last wrote in here it was before Glastonbury. It feels like months since I was there. I had a great time this year. So much better than last year and I think that was mainly down to the fact I am so much better myself. I spent so much of 2009 asleep, I hardly saw anything I wanted to and I felt terrible when I was awake, so wasn’t in the mood for it all. I didn’t have that problem this year. I coped. I was really excited to be there again. I love that place. It is just so special to be in this big temporary city of pleasure and fantasy. Glasto is so removed from the real world it is a great place to escape to.

I did have a small stress when I realised I’d forgotten most of my Reboxetine. I took them out when packing to cut the half tablets I needed (I take 6mg – 1 and a half tablets a day) but forgot to put the whole ones back. The staff at Festival Medical Services were great though. The pharmacy obviously didn’t have them in stock but they ordered them for me. I had enough to last until Friday so I could wait til they came in then. The pharmacist was going to give me the whole box of pills because they were very unlikely to need the rest and I could obviously use them but she didn’t in the end. I had my repeat prescription list with me for reference and when her and the doctor saw it and the long list of drugs, she got worried about the fact I only get fortnightly supplies. I gave her my assurance I would be ok, but she wasn’t convinced, so in the end she just gave me enough to last whilst I was there. Fair enough, but it made me sad to think how much of a consideration my overdose risk is still considered, even now all serious thoughts have passed.

I was impressed at the set up at the medical centre. It was basically A&E in a tent. They even had an X-ray suite in a lorry! Lots of crutches to hand, although instead of all the mud-related falls they usually get, there were just lots of heatstroke cases.

Musical highlights included Laura Marling, Muse, Broadcast 2000, The xx, The King Blues and Rolf! Laura was amazing. I saw her proper set on The Park, but also saw her do a very short secret set on the BBC Introducing stage for Jo Whiley’s show, which was nice. Had to beat the England match anyway! Although I am sad we missed Ray Davies at the same time.

I was registered as disabled whilst I was there which meant my bloke went for free as my carer and I had a viewing platform wristband, which was to make it easier if I was struggling with the crowds. I felt a bit weird about this as I didn’t feel disabled enough really, but then if I was still as ill as I was when I applied I would have needed it more. I did use the wristbands once for Muse. I wouldn’t have been able to stay and watch in the normal crowd. I felt panicky enough just getting to the platform. I don’t understand where my crowd anxiety has come from since I’ve been ill. I used to love being in a proper packed gig crowd, but it makes me really anxious these days. The view over the Muse crowd was amazing though. I loved watching the people signing in the deaf zone too. I didn’t get quite how deaf people could enjoy a gig without hearing it, but seeing those guys work was inspiring and the people watching were obviously enjoying themselves.

Leaving Glasto is always sad, but I think it was harder this year than normal. I didn’t want to go home, back to boring Limbo-land. I felt pretty low and dejected when we got home. Glasto soon felt like a distant memory and I just wanted to go back. I can’t wait for 2011.

Since then we have also been camping in Northumberland which was weird with the Raoul Moat thing going on whilst we were there. We were far away enough from Rothbury though to not get caught up in it although we didn’t go up to Cragside because of it all. We did drive past Police HQ in Ponteland on our way to Hadrian’s Wall on the way home on the day he was caught though and it was strange to think about what they were all dealing with whilst we were on holiday.

Camping was good. Windy, but pretty dry. Saw lots of castles and beaches, which is what you expect up there. Nikki dog was very, very happy. Bless her. Highlight of the trip was seeing all the Puffins on The Farne Islands. They’re very cool birds.

We’d been home for a few days and then today was my sister’s graduation in Birmingham. They are excessively boring ceremonies although hers was better than mine at Manchester. I felt a bit weird in there. It made me think about how little I have achieved since graduating.

And now I am on the train to catch up with my bloke and our uni friends who we are camping with this weekend. Lots of camping at the moment. Hopefully we’ll have a good weekend but it looks like it will be wet.

This post is very dull, but writing it on my phone has kept me entertained whilst on the train and I thought it was time I tried to write something to catch up a little.

There are lots of things I want to catch up on and write about but I haven’t had much time for blogging lately. Soon I hope.

Xx

Written by intothesystem

Thursday, 15th July 2010 at 10:26 pm

Recovery, Scoring and ESA…

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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.

Pathways to Work…

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A couple of days ago I got a letter from the local jobcentre asking me to come in for a “Pathways to Work” interview in two weeks time. The Pathways to Work scheme is designed to get people of incapacity benefits (IB or ESA) and back into work. It is geared at people who do not have jobs and the support offered is all about work experience, improving skills and finding a job. For someone who already has a job but is just too unwell to work, this is obviously a complete waste of time.

The literature that came with the letter was even more frustrating. There were a number of “success stories” of disabled people who had successfully got into work through the Pathways to Work scheme. The disappointing thing was all of these people had got minimum wage jobs in local supermarkets, washing dishes in kitchens or working in DIY stores. There were no teachers, lawyers or accountants. No doctors, nurses or IT consultants. No one was in a managerial position. Everyone was in a basic entry-level role, with few prospects for career progression and no doubt earning very little. I know for some people, a job in a supermarket is a massive achievement, but for many it is a massive step down. Not everyone on incapacity benefit has had a poor education or learning difficulties. Some of these people are highly intelligent, highly employable and have been previously very successful until they became ill or disabled. Surely these leaflets are not providing a positive image of disability? The leaflets should be saying, “look, you’re disabled but that doesn’t mean you can’t be successful and get a great job”. Instead they seem to say, “Oh, you’re disabled so you are obviously only capable of stacking shelves in a supermarket”. It is as if disabled people aren’t worthy of aspirations and successful careers.

This poor image of disability is reinforced by the services offered. Improve your CV. Training opportunities to improve your skills and employability. Work placements and buddy schemes. Money for attending job interviews. All of these things suggest that disabled people aren’t employable and need all the help they can get to find a job. Disabled people clearly aren’t capable of thinking for themselves and writing their own CVs. It may be true that in the current climate everyone looking for a job needs help, but this all seems very patronising and demeaning.

The other impression you get from the leaflets was the familiar story that people on incapacity benefit should just pull themselves together and get to work. There was a real sense of the Government’s displeasure about people being on disability benefits. On the first page it states that Pathways to Work is a key part of the Government’s plans to get one million people off incapacity benefits by 2015. Is it really feasible that one million people will recover from their disabilities? In theory it would be great if one million people became well enough to get back into work, but to me, the answer is not Pathways to Work. The answer is improved health care; quicker access to therapy for mental health patients, shorter waiting times for knee or hip joint replacements, more research into treatment for conditions like fibromyalgia, MS and chronic fatigue syndrome. People need successful treatment and support that will help them to recover and manage their condition. Help finding a job or gaining work experience isn’t going to make them well. Yes, working can improve well being and confidence, but for many it is just not an option.

Limited Capability for Work?…

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A little less agitated than yesterday evening at the moment, but I’ve had a terrible night’s sleep. I was very wound up all night and couldn’t keep still. My head was flying all over the place. Every time I drifted into sleep I had busy, fast, vivid, strange dreams. I was waking up from them every 30 minutes or so and wondering why I wasn’t doing all the things I was dreaming about and then I couldn’t get back to sleep because my mind was flying off on all these tangents inspired by the dreams. Things eventually seemed to calm down a little around 6-7am, so I did get a couple hours of sleep, but even then my sleep was littered with more dreams.

Part of this agitation may have been exacerbated by the argument I had with my partner last night. The night before I am due to go for an ESA medical, testing whether or not I am fit for work, he tells me I should just go back to work and implies that I am lazy, a skiver and not ill at all. This isn’t helpful.

He was telling me that I should just go back because unless I do, I’ll never be ready. He thinks I am just putting it off forever. He thinks I need to go back and try to work because until I do I can’t be sure if I am ready or not. This is of course true, but I think I need to be showing more signs of being ready before I try it.

There are of course a lot of things to lose by going back too soon and then having to stop working. The loss of my permanent health insurance income being one. I’d have to apply again for it, which is a lengthy process. The loss of ESA will be another factor, if of course they ever give me it. As I am claiming under youth rules I’d have to be off sick for another 6 months before I can claim again.

I suspect that he may in part be pushing me back for selfish reasons. He has of course given up a lot to look after me, but I think it is wearing thin and he doesn’t want to stay at home and care for me any more. I pointed out to him that if I am ready enough to go back to work then he shouldn’t need to care for me anyway and should just go out and get himself another job, but he didn’t seem to agree. The fact he still thinks I can’t be left on my own must tell him I can’t be expected to work. I would likely be on my own a lot in the office and there’s also the matter of getting to and from work. It would be easy to abscond.

My social worker seems to have a strange attitude to my employment. She was asking me if my goal for recovery is to get back to work. For me, the ultimate goal is being well enough to work again and more importantly for me, to go back to the job I loved doing. She seemed disappointed with this and almost surprised. It really felt as if she thought I shouldn’t expect to work again because of my mental health. Maybe she just feels I shouldn’t be working in a high-pressure, highly competitive environment, but for me, working in a simpler job wouldn’t be recovery. It would seem like a poor compromise.

To me her attitude to work seems bizarre. Surely her goal should be for me to return to a normal life, or at least as normal life as possible? I don’t think it should be expected that I will remain disabled and a full-time mental for life? I really fear that will happen and need as much help as possible to stop it happening. I know I have to face the fact that this illness isn’t going to go away and I will have to learn to live with it, but I hope that I will be living a fuller life than this sometime soon.

At the moment I don’t think I’m ready to go back to work. This sudden swing into agitation is a suggestion of that. Last time I tried to return to work I became very hypomanic, very quickly, probably aided by the fluoxetine I was on at the time. Work is likely to fuel this mood and send me up and up. Maybe that would be nice, but I’m not sure I’d be a productive employee.

Even if I hadn’t have entered this mood yesterday, I don’t think I’m ready yet. I am still battling suicidal thoughts almost constantly. Stress would only make these thoughts more urgent and amplify the need to escape this world.

There is also the matter of anger management. I’m not there yet. I have calmed down on a month or two ago, but I am still struggling with bubbling agitation. The smallest thing can send me into rage, wanting to hurt both myself and the cause of the anger. I have to admit I can’t take criticism. It was something I found hard before, but I usually turned it on myself mentally. Lately I’ve been literally hitting back and that is not suitable behaviour for work. I don’t want to be violent and I certainly don’t want to display that in the workplace. It would do nothing for reducing the stigma that mentally ill people are dangerous.

It is these things that I’ll be talking about today at the medical. I need to convince them I shouldn’t be working, yet I’m doubting this myself. I hate being hypocritical. I guess if I do get through the medical it is proof that I shouldn’t be working. If I can convince the DWP, who are notoriously bad at trying to get people back to work before they are ready, then I really must be ill. We will see. I don’t hold my breath.

There is a voice that tells me I am a fraud and I should just go back to work. I feel lazy, sitting around having nothing to do all day. I am trying to occupy myself, but I am not a productive member of society.

I am getting stuff done, but this only makes me think I should be working. Over the past couple of days I’ve embarked on a project to sort out all of my photos and to get them online. I used to have a photo gallery on my website, but I took it down when the domain was up to expire and since uni I’ve been very lazy about my photography. I have literally thousands of images, over 40gb worth. A lot of these are utter rubbish, but I want to find the ones that aren’t and get them out in the open. Anyway, the point of this is I’ve been sitting on my computer sorting this photos out and generally I’ve been able to concentrate on the task in hand. Considering a vast amount of my job is sitting at a computer then maybe I should be doing that and not just sorting out my photos.

I’ve been baking more recently and on Tuesday, I also made a load of home-made chocolates. I managed to do it successfully this time after a recent attempt involved me using semolina instead of sugar. Unsurprisingly the mixture had to go in the bin. They were popular at creative remedies yesterday, with many suggestions of having to sell them or give them as christmas presents.

I had even ventured back into the world of books and reading over the past month or so. I haven’t picked up a book for a couple of weeks, but I was getting there. I was reading stuff and even starting to enjoy it a little. I sometimes had to read paragraphs multiple times or forgot what I had been reading the previous day, but I was getting through the pages.

I also worry about this blog. The fact I can sit here and read and write. Does that mean I should be working instead of just writing about the fact I’m not? If people found this, would they use it against me to tell me I should be working?

This desire to work has of course has been amplified by my mood since yesterday. I have all these ideas of things I could be doing at work. I will not be on a project at first so need to find some internal work I could be doing. I can think of so many ways to improve our company. So many things that could be done and I want to be the person to do them.

There are barriers to returning. My doctors tell me I’m not ready. My social worker tells me I’m not ready. I need to go to occupational health before they will let me go back to work and they may well tell me I’m not ready. When will I know if I’m ready? How can they know?

A long week…

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A lot has happened in the past week. I kept meaning to write, but time got away from me.

I saw Dr G last Tuesday and was disappointed. It was a fairly pointless appointment. I did mention my dip in mood in the weeks prior to seeing her, but she didn’t have much to say. She increased the Lamotrigine again by the minute amount of 25mg, so I’m now up to 125mg b.d. She asked me about the hand over to the NHS. She seems ready to hand me over and doesn’t seem to want me to continue seeing her once I’m in the hands of the NHS. She thinks it will complicate things, which it would, but I trust her a lot more than I trust the NHS and I appreciate the constant input. I’m worried about the frequency I will be seeing the NHS psychiatrist. Talking about this with my social worker today, she said that if people are “stable” they will only see the psychiatrist every 6 months, even if that stability isn’t a particularly nice state to be stable in. She said I may see them a little more often at first, but even then it may only be every 3 months or so. This terrifies me. At the moment I always have that “if I can get through the next fortnight until I see Dr G, things may be okay”. This can keep me going. Knowing I’m on my own for months may be enough to make me give up again. I know I can ask for a rapid access appointment if things get scary, bad, but I’m not sure that’s enough and I can’t be asking for one every month or so!

On Tuesday night I learnt the bad side of knowing lots of people with mental health issues. One of my friends who I met in The Priory texted me to thank me for being her friend and to apologise for the fact she was going to kill herself that evening. I didn’t know what to do as I felt powerless to intervene and hypocritical for wanting to do so. She had been a long-stay patient in hospital and I believe was on overnight leave at the time. In the end I contacted the hospital she had been at and told them what she’d said. They wouldn’t discuss it with me due to patient confidentiality or even acknowledge what I had said, but I hope it alerted them and was of some help. They told me to call the police instead as they would have the power to intervene, but I didn’t want to do that. She tried to call me a couple of times in the evening but I missed the calls and when I called her back she didn’t pick up. I was worried but I did what I could. I was relieved when she later texted to say she had been picked up by the police, although worried for her. The hospital she had been in have chucked her out, presumably for breaking the rules of her overnight leave. I’m shocked and appalled by this decision as she’s at her most vulnerable at the moment. The people who are meant to be caring for her have dumped her when she needs them most and she is now alone and extremely ill. Last I heard she was staying with some friends and I just hope they can keep her safe.

This whole thing was triggering for me. I wanted to help her and intervene with her decision, yet I myself wanted to do exactly what she was doing. I was jealous of her at the same time as worried for her. I was angry at myself for being so hypocritical. I knew that if I was in her position I’d have been frustrated if she had intervened, but then I still wanted to do something. I couldn’t just stand by and let a friend die. I was comforted by the fact that she had contacted me. It suggested to me that she wanted someone to do something. She’d have gone alone and quietly if she was completely determined to succeed.

Wednesday started with a trip to Dr N so he could steal my blood for the mood disorder research. He struggled to get anything out of me. Spent ages trying to find veins in my arms and used my wrists in the end. The first attempt failed and has left me with terrible bruising and some wrist pain. The second attempt was eventually successful, but painful as he pushed the needle around in my wrist. We got there though in the end.

After this it was a trip to my office. My work laptop was due to be upgraded so I had to go drop it in to the IT department. It was weird to be in my old work environment. It made me realise that I really missed it. I wish I could just go back and do my job.

I had Creative Remedies in the afternoon. It was visual arts this time, which boils down to painting. I was disappointed by the class as it is restrictive. We had to start with a “colour wheel”, which made me feel I was in primary school. I know very well which colours mix together and what primary and secondary colours are. For our first project we have to choose images from a selection of Japanese, Egyptian and Art-Deco pictures and use these as inspiration. It feels very much like art at school, which is frustrating as I’d rather paint whatever I liked. I was impressed with the materials on offer though. We get a portfolio folder and sketchbook, access to good quality acrylics, watercolours and gouache paints and canvasses to work on. It’s all free so I can’t really complain. The teacher does seem to be experienced and the outreach workers are the same as on Monday’s session, so we should be able to develop a good relationship with them. I’ve been getting on well with one of them in particular already. It is basically just an art class though and not art therapy at all and although it gets me out of the house and doing something it doesn’t seem therapeutic. I miss the emotional freedom of art therapy at The Priory and the therapists there.

Wednesday evening saw us heading over to Snowdonia for a few days camping. My parents and grandparents had rented a cottage over there for a week, so we joined them for a couple of days. It was nice to get away for a few days, but I was feeling a bit flat a lot of the time. A good campsite near Beddgelert, we enjoyed nice food at The Goat Hotel on Wednesday evening.

The highlight of Thursday was a trip to Harlech castle, but a further reminder of my illness. Disabled admission was one such reminder. A bonus in that it was free, but even still I feel weird asking for it. I find it hard to think of myself as disabled. The second reminder came from climbing the towers. I felt uncomfortable at those heights. I am not scared of heights in any way, but I wanted to jump. If my parents and partner weren’t with me it would have been a huge temptation. I don’t think I could do that in front of them though. The image of my fall would haunt them for too long. Aside from this though it was good. I’ve never been such a big fan of ruined castles, but the views were fantastic.

Friday brought beautiful weather and a trip to the beach. We struggled to find one where our dog was welcome, but eventually stumbled across a beautiful little cove, with golden sands and shallow water. The beach was almost deserted with just one other couple there most of the time. We went for a swim, which was of course cold, but good. It was lovely to see our puppy swimming properly for the first time. I felt like a proud parent. There were also lots of little silver fish swimming around, which was unusual but made me a little squeamish.

We came home on Saturday, amidst drizzle and murkiness. A real downer after the lovely day on Friday. Our tent was soggy and I hate packing at the best of times, so I felt pretty awful. I’ve just felt pretty low all weekend and have had little motivation to do anything. I just want to hibernate really.

The highlight of today was another trip to Creative Remedies. I have enjoyed it and I think I will continue to, but I am still unsure of the therapeutic benefit. I wonder whether the vast amount of money that is being spent on this should be put to better use elsewhere, especially in reducing the waiting lists for other therapy.

My social worker came over today to check up on me before we both go and see the NHS psychiatrist tomorrow. She had some paper work to read and sign – mainly my risk assessment and enhanced CPA. It was weird to read a catalogued list of risks and declarations of my suicidal thoughts. She asked me what I wanted from the appointment tomorrow and tried to set some expectations. It seems that we will go over history and recent mood. It is apparently unlikely that the psychiatrist will change my medication on the first meeting and it is likely that I won’t see them again for a while. I don’t see the point in just going over my history and not actually doing anything. He can find the history in my notes and I’d rather use this appointment to make some changes that may help me to recover. We will see though. Wish me luck. I really fear I am going to need it.