Into the system…

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

Posts Tagged ‘support group

On my own…

with 7 comments

My care-coordinator, C came to see me on Thursday. We weren’t meant to be seeing each other until Monday when I had my appointment with my psychiatrist, Dr M, but C called me on Wednesday to tell me she wanted to go through the updates to my CPA and risk assessment beforehand. When she arrived she told me the real reason she had came was to tell me she is leaving. It was nice that she wanted to do this personally and made the effort to make the appointment to see me before she went, but I’m sad that she’s going. She’s been asked to work in a CAMHS role, which is what she trained in. I think this is really positive for her and she seems excited about it, so I’m happy for her. I’d just got used to having her around and she was so much nicer and more helpful than useless SW, J, who I had before, so it is a shame. It was quite nice to know she was there if I needed her as I had faith in her, but I think I’ll be okay anyway.

I was asked what I wanted to happen now. I had the option of being assigned someone new or having no one assigned and letting Dr M and my GP, Dr N manage things for a while. I decided to go for the latter. I’ve never found the CMHT overly helpful and I am not sure I really need a social worker at the moment, although it was nice to have C there, just in case. To be honest, I think not asking for another person is more about trying to avoid another useless SW like J was. She did more harm than good I think. I’m not quite sure about the prospect of being a little on my own, but I think it will be okay. I’ve been told I can ask for one at any point and someone will be assigned, so this seems to make sense. I think whilst I’m just waiting to see if things stabilise there isn’t that much to do or say. It just seems to be a case of waiting to see if the improvements hold out. I do wonder if it will be helpful to have someone involved when I am trying to return to work, but we shall see what happens.

Saturday was a bad day. I guess one had to come along again at some point, but it was worse than I’d expected. I woke up feeling a little dodgy in a physical sense, but after a silly argument with the bloke things went downhill. I was crying almost non-stop for hours and when I wasn’t crying I only felt capable of staring into space. I couldn’t think and felt completely exhausted. It got to the stage where I couldn’t really speak properly and when we went to Morrisons I was struggling to do much more than walk around like a zombie, whilst my bloke did the shopping. Something just wasn’t right. I felt depressed, but I didn’t even have the energy to be suicidal. I was just devoid of anything. In the end I couldn’t wait to get to bed so I could start a new day and hope it would be better.

I felt a little better by Sunday morning and by the evening I felt okay again, so hopefully that has passed and won’t happen again. I don’t know if something just snapped or if crying wore me out, but it wasn’t good. I just felt so awful and it was horrible to be back in that place. I’ve not experienced that sort of catatonic depression much as I have a tendency to irritability and agitation, but it is scary when it happens. I don’t know how anyone gets through days or weeks or months of that. I guess the fact is, you’re so down it is impossible to do anything but wait. You don’t have the energy to end it.

On Monday I saw Dr M again. It was a bit of a nothing appointment really. We discussed how the last 6 weeks have gone, but there wasn’t much to be said. Things are still much the same as when I last saw her. I am a lot, lot better, but not 100%. Still getting the odd bad day that catches me off guard, but most of the times things are in the realms of normal. We talked about possibly increasing the Reboxetine again, but she was inclined to leave things as they are for now. She wants the option to manoeuvre the dose up again in future if things dip over time or if  I struggle whenever my therapy referral ever comes around. If she puts it up now, she wouldn’t really be able to increase it much more without pushing the side effects up into unmanageable territory. She asked if I’d heard anything about therapy, which I still haven’t. It’s getting a bit ridiculous because it gets pushed back further and further, but it doesn’t surprise me at all.

We talked about the fact I was seeing occupational health today and what I felt about it. She asked me when I next wanted to see her, which I felt was positive. I was given the option of two weeks, two months, whenever or never again. This would never happen with the CMHT, although I’m not sure how serious she was about never again! I suspect she may have had something to say about it if I chose that option. We decided I’d call her when I have decided though, based upon what was said at occy health and whatnot. She was good to point out I can call her whenever if I need to see her between appointments. I’ve been pleasantly surprised at how things have changed between me and Dr M. I didn’t like her at first and I really got the feeling she didn’t like me, but now she’s seen improvements and got to know me a little better and not the me she met when I was in hospital, things have improved. We shall see how things go. I don’t know what happens when I am passed back to the CMHT or discharged by her, but at the moment I’m appreciating the stability and glad I’m not being passed from SHO to SHO.

So today was occupational health. I have been worried about this one because the nice consultant I’ve seen in the past has left the firm. I have to confess to googling the new guy (another Dr G, so not sure I’ll be using that moniker for him) and I found out he has worked for the Health & Safety Executive in the past and has a more safety-focussed history than the last doctor – I got the impression ladders and chemicals were more his thing than mental health, but I could see he was an experienced occy health consultant, so he was going to have come across psychiatric patients at some point in his career. He seemed nice enough. Quite softly spoken and very keen to point out that he is not on anyone’s side and that he has my best interests and health in mind, so I guess that’s good to know. I’ve found that to be true for all of the occupational doctors I’ve seen. Every time, they’ve been supportive and they are not just trying to get me back in work. A pleasant contrast to the DWP/Atos Origin lot I guess, who only seem to care about declaring you fit for work (although to be fair in my case they didn’t).

We discussed how things were compared to last time I saw Dr R. In general, things have improved a little and the improvements have been maintained so that is good. He asked me how I felt about work and occupational health. I confessed to being in two minds – half the time itching to get back and on bad days, worrying that I’d never be well enough. He said that was to be expected, which I guess is true. I was pretty surprised that early on in the appointment he made it pretty clear he didn’t think I’d be returning any time soon. He feels it will be a long time before I go back properly and that I need to show stability for a while before we consider it. I was hoping to go back in some capacity soonish, so I’m disappointed really. I guess I have to slow down and wait and see how things go. I am aware that I shouldn’t rush things, but at the same time it’s about balance, because if I wait too long I will begin to feel useless and get frustrated.

He also said that a return will be very slow when it comes and it could be a very long time before I’m back at work properly. At first it will be just dropping into the office a couple of times to say hello and then maybe working an hour or two a week, building that up to a few mornings or afternoons and then we’ll see. I suspect I will get impatient with that approach, but I know it is what we have to do. I know though that I have a tendancy to do more than I’m meant to, so it will be difficult I think.

Now that I’ve been told I definitely can’t work yet, I feel a bit stuck. I’m having to wait and be patient and I am getting itchy. I had thought that I’d be going back sometime this summer. I expected to be setting a date to start a phased return, but I’m apparently not even ready to do that yet. I have to wait a couple of months before I see him again. If things have improved/stabilised then we can “possibly” start to plan a return. He did suggest three or four months before I next saw him, but I felt that seemed too far away. I’m worried I’d miss my window of opportunity to have some “normal” life. He agreed on two months or so unless I go downhill again in that time. He said I deserve to have a bit of happiness first, which I guess is a nice thought, although it also makes me worry he feels I won’t stay well if I do ever go back to work. I also wonder if I can be really happy if I’m not working. I want things to be normal. I want a career. I want to stay well.

In a way it is good. I know that I don’t have the worry of going back to destabilise things whilst I’m still not 100%. Maybe the therapy assessment will come through in time. It might be good to follow Dr R’s recommendation that I wait to see how I get on with therapy before I return to work. I don’t hold out much hope on that one though.

I guess this time of year is the best to be off too. Summertime. I won’t have to worry about taking time off for holidays. I can make the most of the sunshine, when it happens. I felt awful for most of last summer and I didn’t appreciate it. I am appreciating the sunnier days now.

I guess I can also stop feeling guilty and worrying about being on ESA and in the support group. When I have a good day and I feel normal, I wonder why I’m not at work. I am in the support group, which means I am meant to be too ill or disabled to ever consider seeking or returning to work. Until recently I thought that was the right decision, but as things have improved and I have got keen to return, I wasn’t sure I fitted that criteria any more. I always hated the thought that I was too ill to consider working, even though I knew it was true, but I find it even harder now I am not so sure. Before, I did fear I’d never go back. I couldn’t see any sign of improvement, but I hated the fact that others didn’t have much hope of improvement either. Now I can see that improvement I want to work. I loved my job and I miss it more than ever now. To be told I’m still not well enough to consider working is sad and hard to admit. The upside is though I should stop worrying they will accuse me of benefit fraud. I am not allowed to work even if I want to, so I have to accept that. Without the blessing of Occupational Health I can’t go back.

I just can’t shake off the feeling I am being held back, but at the same time I need to stop myself trying to run before I can walk. I’ve been off work for two years and during that time I’ve been very ill. I know that. 6 months ago I was in hospital. A few months ago I was still threatening to kill myself. Things have improved a lot in a short period of time, but unfortunately that doesn’t mean they can’t change back in a short period of time either. I hope they won’t. I don’t think they will, but it seems I have to prove that these improvements are going to hold out and I can reach some form of stability, before I can consider myself well.

Hmm. We shall see. We shall see.

p.s. I did a quick edit on this post on 9th June. I ran out of time yesterday so the last couple of paragraphs had been somewhat rushed and I didn’t say everything I wanted to. I also didn’t tag things properly. There is still more I can say on this, especially as I spoke to HR today, but I will leave that for another post.

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.

Nothing Changes…

with 5 comments

That’s how it feels at the moment. Everything is the same. Nothing has changed and I’m fed up of it.

I don’t know what to do with myself because everything feels pointless. I try and keep busy, but when I do it all feels meaningless and that only leads to frustration. I have enough frustration already.

I saw Dr G earlier today. I had to wait an hour as she was caught up due to an emergency. I hated every second of my wait. I get so, so nervous every time even though I’ve seen her so many times before. I just can’t seem to get over it. I sit there and feel sick and can’t sit still and it’s just horrible.

The appointment itself was fairly uneventful. She told me the CMHT have been in touch, which I guess is positive. She said that she needs to call a Dr B to discuss things and handover. As Dr N said to me the other day, I’m collecting a whole alphabet of doctors slowly. She didn’t know how long it would take for everything to get sorted out though. It could still be a while before I get some more support.

I kinda told her about Thursday, but didn’t say so in as many words. I think she got the idea, but didn’t bat an eyelid. I don’t think anything I say to her surprises her. She’s used to the constant suicidality. I wonder if there’s any point saying any of it. I am trying to be more honest about things and it doesn’t seem to help. I wonder if I’d be better off going back to playing the roles I was playing before and pretending things are okay, even though they clearly aren’t. The thing is that wasn’t working either. I just don’t know what to do any more.

Writing this blog isn’t easy any more. I can’t be truthful. The bloke always gets upset with me, whenever he reads the truth. I don’t know how to be honest and not upset people. I am still trapped.

Every time my partner reads my blog, he expresses his wish for me to stop reading other people’s blogs. He thinks that we bring each other down by writing about our depression and all being depressed together. He doesn’t understand that this community is like group therapy, only free and accessible at any point.

There really is little to tell between this blogging community and a Support Group at The Priory. There you are in a room with a number of strangers, some you may know already through therapy and others you may not, and you all talk about your current issues and moan about your depression, whilst the others chip in with comments and try to offer support. Here, we all write about things and support each other with comments, but instead of being confined to two hours at a specific time and costing hundreds of pounds, the support is available 24/7 and is completely free.

He doesn’t tell me to stop writing anymore, but he doesn’t understand that I can’t write and not read. The help I get from reading others experiences is valuable and I would feel guilty if I kept writing my blog and people commented but I could never read their blogs in return and offer my support. That just wouldn’t work. It would be all take.

He tells me it is my choice, but the problem is it feels like it’s no longer my choice. The blog doesn’t feel as helpful as it once did, now I feel I can no longer be honest. Every time that I am, I end up with a fiancĂ© that either stops talking to me or cries at me. That’s not helpful, even if the comments I get are.

I don’t know what to do anymore. I don’t just mean that about my blogging, but about everything. I find myself with empty days, not knowing how to fill them, because everything I could possibly do feels pointless and a waste of time when all I really want is to not be alive. I find myself thinking over new plans and strategies, but fear that none of them will work. I find myself wondering how to get myself out of this mess and as much as I try to force myself to take positive steps, I just don’t know what is worth trying. When is all of this going to change?

Hope or Hopeless?

leave a comment »

Reading back over my last post, I’m struck by the hopefulness of it. I didn’t think I felt especially hopeful when I was writing it, but that is the sense I feel looking back. At the time, I thought I was going through the motions, self-censoring my words to make it seem like I was hopeful. I had it in my mind that I would not return from London. I had it in my mind that I had to present that I was okay and going to be safe down there for my partner’s sake, but deep down knew I’d be battling against the safety measures that I had put in place.

As you can see, I have returned from London, so maybe my hopefulness was genuine? Maybe I realised that I would overcome my suicidal wishes and survive the weekend? I don’t know. My hope is as fleeting as my moods.

It was touch and go at times. On Sunday night, I genuinely thought I would not return. I had a clear plan in mind and was preparing myself for it. I was on the edge. I didn’t want to go home. I wanted to die. I got scared by my mind and the clarity of it and forced myself to take double sleepers to knock myself out. I think they worked. By morning, I woke feeling less certain of my plan and keen to get home. I felt mildly optimistic and even, dare I say it, happy?

How can one’s perspective on things change so quickly? I don’t know if I am coming or going. I don’t know if I am full of hope or hopeless.

My weekend, overall, was good. My mood was unstable, as is the usual, but I did enjoy Saturday night. Lots of alcohol and lots of dancing and I was okay. Moments of withdrawal and sadness descended if I stopped to breathe, but I kept them at bay with a relentless performance of “coping”. I tried to live in the moment, something we are continually preached about at The Priory. It was enough to keep me going and even enough to let me smile a little and actually believe in it and mean it.

Sunday was a slow one and much harder. I didn’t have an alcohol hangover, but a mood one was definitely apparent. We didn’t do much. Stayed in the flat most of the day and went for food in the evening. There was no pressure and with that, I could manage. I had to battle against the thoughts in my head, but without any need for a performance, I could concentrate on that and concentrate on the moment. It was okay.

Last week I didn’t see past the weekend. I didn’t expect to see today. A friend of mine said to me on Friday, life is like driving in the dark. You can only see as far as your headlights allow you, but you know that if you keep going you will see a little further and if you keep going like that you can go all the way. I think that is how I’m living life at the moment. I can’t see very far. I don’t really want to see very far, but I am still getting through each little bit. I just hope that my headlamps don’t go out any time soon or the fog doesn’t get any worse. I’m still struggling and I hate it.

My mood dropped again yesterday. I was at The Priory and although Art was reasonably relaxing, Support was uncomfortable. I was agitated, unable to stay still and the conversation was irrelevant to me for most of the session. I sat and tried to listen, but all I could think about was my unrealised plans from the weekend. When it was eventually my turn to speak, I unleashed my frustration at my mood. My frustration at the speed in which it twists and turns. I did not know what else to say and neither did anyone else. Their depression is explained by divorce, family issues or work stress. Mine is explained by nothing. By faulty brain chemicals or a disordered personality? I do not know and I still don’t have any answers. I am fed up of it.

I don’t know what else to say anymore. On Sunday, I had lost all hope. On Monday, it returned. Yesterday, it was wavering. Today, I do not know.