Into the system…

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

Posts Tagged ‘PD

Too much to say…

with 12 comments

I have lots on my mind and plenty that I’d like to share, but the time and motivation has been lacking. I wish I could just empty my head onto this blog, without having to go to the effort to sit here and type. When I am lying awake at night, I think about what I’d like to post, but I rarely make those posts a reality. It would be brilliant if I could make posts happen just by thinking of them. It would make me a much better blogger and would save me a lot of time. It would give me something to do when I can’t sleep. It would also mean that this post wouldn’t have taken over two weeks to materialise.

So the big news is I’ve started therapy. Or rather I’ve started the assessment sessions for therapy with the new psychologist.

The first few appointments have been okay I guess. During the first appointment we mainly talked about the practicalities of therapy and she updated me on the changes going on in the service (change in Trusts). She asked me a bit about what has been going on for me lately and how I feel therapy can help. I didn’t really know what to say, but found myself talking about the whole diagnonsense malarky. I was scared about getting onto such territory, but I guess the fact I felt able to bring it up must suggest I was relatively comfortable talking to her. I was worried about how she would react but she seemed reasonably sympathetic and supportive of my concerns. I told her I was unhappy about how they were so quick to change my diagnosis to a PD, especially when I was obviously unwell and not exactly demonstrating my usual behaviour. I think she understood, but I don’t know if she agreed as such.

I felt completely exhausted after the first appointment. I had to go straight to work and had a few errands to run and wasn’t in any frame of mind to do so. I was feeling really dazed and found it was impossible to concentrate. I didn’t get anything useful done at work, but at least I didn’t have anything important to do. I got lost twice that afternoon too. Despite looking up directions, I would forget where I was going before I got to the first junction and have to pull over and look them up again. In total, I probably spent over an hour driving in circles on that day trying to find the depot to collect a parcel. One of the places I’d been to hundreds of times before too, which is even more frustrating because I never used to get lost. If I’d been somewhere, I could always find my way back. Not any more.

The second appointment was a lot less structured than the first and felt like it went all over the place. We covered ten billion things, yet I don’t know how much was relevant. It felt like we were skipping over things too quickly and completely missing out others. I guess it is hard to know where to start when there is so much history to cover and so many different layers. The appointment went in no time and I can barely remember anything which was discussed. At the end she suggested we tried to start from the beginning for the third appointment and she asked me to put together a timeline of key events, separated by good times and bad times. I’d done timelines and histories before, but was a bit worried about putting it together again and leaving things out.

So the third appointment was meant to go over my time line, but we ended up talking a little about the second appointment first. When we did get on to the timeline we didn’t get very far. We only managed to cover up until the end of primary school really. She asked a lot of questions, mainly about my family and what life was like as a child. I can barely remember, so this was hard and I didn’t know what to say. I have a few clear memories and a lot of fuzziness. The session disappeared in no time. We’re meant to be picking up on it again next week. Fingers crossed we will cover a little more. There are only two more assessment sessions left.

Aside from therapy I have got very little else done over the past few weeks.

I saw Dr N a couple weeks ago and we discussed the medication question. He hadn’t got the letter from Dr M. He said it usually takes her a while. I explained what her suggestions were and we discussed it. He thinks Quetiapine should be a definite no, which I agree with. He didn’t think it helped me the first time around and as I’m already on the Lamotrigine as a mood stabiliser he is not sure it will help. He was really keen for me to come off the Reboxetine though and was keen to find an alternative. He said that I have been “really quite unwell” since I started it. I know I’ve been struggling a lot with the side effects, but I’d never really considered the physical illness to be all that important even though it is problematic. I have always thought the mental improvement was worth it. When I was so depressed before, it was just a relief to feel different. He is not so sure that Reboxetine is good for me though. He still isn’t even convinced the Reboxetine was responsible for my mental improvement. I don’t know. He seems to like the idea of trying Mirtazapine. He considers it a more effective anti-depressant and thinks it will help with my sleep. We talked about the weight gain and he said I could always stop it if that became a problem. Overall, he seemed to want me to take it and he offered to write me the script, but I wasn’t so sure. I mentioned that the bloke wasn’t keen on the idea and he said that didn’t surprise him. It’s so common for people to want you to take less pills, not more. To be fair, I’d like to take less pills, but I know that is probably not a wise option. I decided I’d like to wait and think about it a while longer though. I also mentioned that I’d got the therapy appointment through and he agreed that therapy may be a reason to hold off making any changes right now. I wouldn’t be able to tell if something was making me worse or know what to blame. So that’s how I left things. I am going to see how the first few therapy appointments go and then decide. I could try and hang on until Spring and then maybe I can manage with a lower dose of Reboxetine again anyway, but we don’t know. It’s another case of “we shall see”. It’s a phrase I seem to use often at the moment.

I had my dental hospital appointment as well a few weeks ago. That was to discuss the TMJ (jaw joint) problems I’ve been having. I had an x-ray and after a long wait the consultant poked and prodded and moved my mouth about, to come to the conclusion it’s a cartilage problem. She didn’t really offer any solutions to this problem, other than the usual stuff. I was aware of the normal management techniques already – identify habits such as nail biting, night-time grinding etc, do some simple jaw exercises and take ibuprofen regularly. She agreed that there was no evidence of night-time grinding from my teeth, so she doesn’t think a splint or mouth guard will help. She did notice that I had short, bitten nails, but I actually tend to pick at them with my fingers rather than bite them. So she’s given me some jaw exercises anyway and I see her again in 3 months.

There was one weird thing about the appointment though. The consultant reminded me an awful lot of Dr Shock, who was in charge of the ECT. Considering I attribute the jaw problems to the ECT, I found this very unsettling. I don’t really remember what Dr Shock looked like, but this consultant was an equally large woman and I remember her voice was very similar. Something about her manner reminded me of her too.

Thinking of ECT, I drove past the hospital today. I have been past a couple of times since I had the treatment and every time I go past I feel a bit weird. I think of the taxi trips over to the other hospital and the strange nervousness that went with it.

Last week I had another appointment with Dr Occy Health. It was a strange appointment, made stranger by the fact he misunderstood me near the beginning and it only become clear towards the end of the appointment that he was mistaken. When I said I was still only working 6 hours a week, split over 2 days, he thought I was working 6 hour days, twice a week (12 hours). This is understandable because it is what we were aiming for. He went through most of the appointment under the assumption I was fine, had met the 12 hour target and we should set a new target of 15 hours by the end of Feb. I didn’t realise until he went to dictate his letter at the end. We had to back track quickly and he said we should just stick to the 12 hour target for now then. He was keen to stress that managing the 6 hours was an achievement, but I felt like I’d let him down a little. He seemed so pleased at my supposed progress, it was a little disheartening to admit I’d not made the target. Admittedly part of the reason for not making that target has been the reluctance to increase the hours from HR. Rehab Consultant Woman happened to contact me when I was at my worst in December and she had been somewhat concerned that I was struggling. It seems she passed this message on to HR, which is why they wouldn’t increase my hours. I hadn’t realised this at the time. Despite the fact I have been struggling a little, I’m not sure extra hours will make it worse. If anything it may even help. I often feel that the 3 hours I am working is not long enough and I try to cram too much stuff into that short period of time. A little bit more time may help me slow down. I don’t know. Then again, I don’t have enough work to fill 3 hours, so how I expect to fill 6 I don’t know.

Anyway, I should sign off. My mood is still up and down and all over the place. I’m managing though for now. Not getting much done aside from work, doctors/therapy appointments and walking the dog, but I am treading water I guess. It is a struggle, but I just have to keep reminding myself I’m miles ahead of where I was this time last year.

I hope everyone else is coping okay. Sorry I’ve been rubbish at commenting and stuff lately. I’m trying to read what I can, but I am also trying to step away at the same time. I find myself losing time and unfortunately reading blogs seems to eat time pretty quickly, so I am holding back until I can find the time.

I feel crap…

with 23 comments

I’ve got a much longer post in the making about returning to work and all that jazz, but right now I just need to whine. The other post doesn’t portray much of how I’m really feeling. It is about recovery, yet at the moment that seems like a strange concept.

I feel crap. Not just a little crap, but really crap.

I’ve been trying to avoid admitting this, but pretending things are okay never does me much good. Maybe if I’m more honest and accepting of how I feel, it will help to ease the pressure a little? I am trying so hard to keep functioning that I am probably making myself worse. I don’t know, but I need to do something and I hope that writing about it will help for a moment.

My mood has dropped. Not just a little bit, but a lot. I could feel depression creeping up on me again, but this past 10 days or so have been far, far worse. During the past week, I have felt worse than at any other point in the last six months. My mood slumped at the end of September /early October, but it didn’t slump this far or this fast. Things had picked up quite nicely since then (and the increase in Reboxetine) and I thought it was just a temporary blip, but now I feel awful and I’m less sure it will be temporary this time.

Every morning is a real struggle at the moment. It is hard for anyone at this time of year, waking up when it is dark and cold outside, but this is more than just winter blues. When I wake up from yet another night of broken sleep and nightmares, I feel the familiar cloud hanging over me. It is a cliché, but it is definitely there, dark and cold, looming over the bed. I realise that it’s back. Depression is here and I am hit with a daily dose of disappointment that I haven’t woken up feeling any better. The sense of dread about yet another day hits me and I want to hide under the cover and never come out.

I know I need to keep functioning and I am forcing myself to keep going, but it is getting harder. On some days I have to go to work and there is plenty for me to do the rest of the time, so I have no choice but to keep going. I force myself out of bed, but it is getting later and later and the incentive to do so is diminishing. I was making myself get out of bed by 9am at the latest, no matter how badly I’d slept the night before, but I can’t do that now. Most mornings I am forcing myself up at 10am, but it was later than that yesterday. If it carries on like this, before long it will be lunchtime before I usually get up. I am doing my best to stop that happening.

I feel guilty when I am like this. I chastise myself for being lazy, but I don’t want to be. I just can’t find the motivation to not be. I know the bloke would chastise me too and that makes me feel more guilty and makes me want to hide how I am feeling. It is nearly always the motivation that goes first. Motivation is tied to noradrenaline and that is what the Reboxetine is meant to be working on, but it doesn’t seem to be doing enough at the moment. I need to get it back, but even forcing myself to do things isn’t likely to help much. It will just tire me out and make me frustrated when I can’t seem to cope.

I am still going to work. I refuse to admit defeat on that. I can’t give up on work. I don’t want to let people down and I don’t want to admit that I can’t cope. I’m worried that everyone will blame this relapse on work and say that I can’t do it. Maybe work is to blame, but I don’t see how it can be. It is not stressful and I was enjoying it at first. It felt really good to be going back and I had definitely missed it. I was being careful not to push myself too hard. My four hours a week were going really quickly, but as my mood has dropped, time has slowed down to a crawl and my last few shifts have felt excruciatingly long, despite being so very short. I have been struggling to find the motivation to go as well and have arrived late a few times because I had been putting off getting ready. My concentration appears to be slipping and I have to keep stopping to remind myself of what I was meant to be doing. I had run out of work the other day as well, so it felt like a complete waste of time and boredom was not helping my mood, but I have now got something new to do, which made it a little easier today.  I will manage though. I have to.

I am struggling to do much else at the moment though. Fighting depression and carrying on with work is sapping all my energy. There is housework to be done, but I am trying to get by with the bare minimum. I sit and stare at the laptop, but I don’t do much with it. I am barely bothering to read blogs or even the news at the moment. I spend too much time hitting refresh on facebook or hotukdeals, because they require little attention. I leave emails unanswered or unsent because I can’t concentrate long enough to write them properly. I am trying to knit a hat for my sister’s Christmas present, but it is slow progress and I keep making mistakes, despite switching to an easier pattern. I tried to go Christmas shopping on Monday, but I was so indecisive I barely bought anything and it took the whole day instead of the few hours I had planned. I have voluntary stuff to do – website updates and press releases to write, but I am putting it off.

I did manage to cope with fundraising at the Christmas Fair on Saturday though, which was a relief. I had been dreading it because I didn’t know how I was going to cope. Adrenaline helped get me through the day, which was a long one to say the least, but I survived. I was working with a decent bunch of girls for most of the day, so at least I had some support and there were plenty of yummy cakes to cheer me up, but I was flagging by the end of the day. We raised a decent amount of cash, which I guess makes it worth it. I felt completely frazzled afterwards though. I had to go out for the bloke’s work do in the evening, but I was exhausted and didn’t really want to go. I did and it was a nice enough evening, but I think I’m still recovering from the late night and long day. Everyone else was drunk too and I was driving, so that didn’t help me enjoy it. My head was so fuzzy, I have no idea how we got home safely. Not good really.

I curiously did the PHQ-9 and the BDI the other day, because I saw reference to the PHQ-9 somewhere and I suspected my scores would show I was depressed again. Scores of around 20 and 30 respectively puts me right on the Moderate-Severe threshold on both scales. I don’t believe that it has got that bad so quickly and I think severe is pushing it, but moderate depression is probably a fair assessment at the moment. Strangely, my scores are worse in different areas to where they used to be, but it’s still higher than I had expected. My BDI score did get up to the late 50s/early 60s though when I was really unwell, so there is a long way to go before I get like that. I did a retrospective scoring for how I was during the summer, just to compare and I would have said my PHQ-9 was about 4 or 5 (not depressed/mild depression) and my BDI around 8 (mild depression?). Things have definitely gone down hill. I think my “natural” state is probably a little on the low side anyway, but this is more than that.

Physically I feel awful as well. Tummy troubles continue. I spent one afternoon last week rolling around in agony. The pain in my gut was just so bad and it came on so suddenly I didn’t know what to do. It was probably the worst attack that I have had and it took a few hours to settle down to a dull ache. My appetite was hit by it and still hasn’t really recovered. My bowels just can’t seem to find any sort of rhythm or pattern, no matter what laxatives or diet I am eating – eat eggs and I end up with diarrhoea, eat beans and I can end up constipated. It makes no sense at all.

In general, my body feels really run down. I have a cold sore and have had a few spots break out lately. I think I may have a urinary infection of some form. I’ve spent most of this week constantly needing to wee, although thankfully it hasn’t felt burny/stingy, so I’m not sure. Last night, a lymph node at the back of my head (behind my right ear, up from my neck) has swelled up and it is really painful. It feels like someone has hammered something into the back of my head and that they are constantly notching up the pressure. I couldn’t sleep at all with it last night. I had the same thing happen on the other side a while back and it took a few days to go down. I hope it does soon. I am not sure how much longer I can take this.

I went and saw Dr N this evening. I was hoping he could at least suggest something to fix my body, if not my mind. Sadly he didn’t have much to offer either. That may be partly because I didn’t know what to say to him. I didn’t tell him all that I wanted or meant to. I seem to have forgotten how to talk about this stuff and I keep forgetting things I should do or say.

He asked me what had triggered my mood. I said I didn’t know. Possibly the time of year, but I’m not really sure. He asked what support I was getting from the CMHT. Nothing is the answer I gave and the truthful one too. I had a phone call last week to tell me they’ve “closed” my case, because I no longer have a worker. They had forgotten to sign off my old CPA when my social worker C left, which was back in June, but someone had found it and said they would send it off to me so they could close my case. Dr N had received a copy too, remembering that there was an apology attached to the front. I don’t know what he thought about that. He asked what other support I have. I reminded him that I am still seeing Dr M as an outpatient, but I won’t see her until January now. He asked about the psychology referral. I’ve not heard anything. He sighed at that.

He mentioned that her last letter suggested that I drop the Reboxetine a few days a week to see if that helps the side effects. She suggested either going every other day – 6mg one day and 8mg the next or even 8mg in the week when I have to work or am at home alone and 6mg at weekends when I have more support. Dr N said he thought the latter may be worth a try, because he hopes that improving how I feel physically may ease my mental symptoms too. He doesn’t think 6 or 8mg will make that much difference either way to my mood, but it might help with the tummy troubles. I am not so sure about the idea, especially in light of my dropping mood. In fact, I’d even tried a few days on a slightly higher dose – 10mg (an extra half tablet), just to see if that could kick my mood back up quickly. No such luck though. I guess it is worth a try.

I didn’t know what else to say to him and in the end we just wished each other a good Christmas and I left. I walked out and finally started crying. I’ve needed to for days, but the tears hadn’t come. I don’t know what to do to stop this decline and I don’t feel like I have anyone to help me. I am scared about Christmas and January and all the memories that this time of year is dragging up. This time last year I was telling myself I just have to get through Christmas. I am doing the same now. The problem is, last time I got through Christmas, only to try and kill myself when January came. I don’t want that to happen again. I am not as bad as I was back then. Things have moved on a lot in the past year. I have hope that my mood can recover again, where as last year I had no hope at all, but I am starting to feel more and more helpless and I fear that I will always be waiting for the next relapse. I am terrified that every time I try to live a normal life, depression will come back and bite me. I don’t want that to happen. My mood has to pick up soon. I need to keep going.

This only seems to scratch at the surface of what I am thinking right now. I am scared. I am worried about what everyone will think. I don’t want to let everyone down. Everyone has been so pleased about the progress I had been making and seemed to be excited about me getting better. I had been so pleased too. I thought I was getting my life back. I am going back to work at last. I am driving again. Everything seemed to be getting back to normal. Things seemed to be going really well. Then I am hit with this slump in mood and I don’t know what to do with myself. I know recovery is a difficult process and I’m always going to have set backs, but this feels different. It isn’t just a bad day or two. Nasty thoughts are creeping back in. I am having to put on my happy face. Life feels like a struggle, rather than just being life. I hope it is just a blip. I really do.

I’m also scared about the diagnosis stuff being stirred up. I was recovering, medication was helping, my condition wasn’t pervasive and untreatable, so I couldn’t have had a Personality Disorder. If I’m getting ill again then people will probably start thinking that it was just a co-incidence and that I do have a PD after all. Maybe I am being paranoid, but I am scared about this. I was glad that I had responded to medication. I may have been treatment resistant, but at least I was treatable.  Now I just feel like a failure. It will be back to the theory that I need therapy if I am ever to recover and I will be blamed for not recovering. No doubt I will never get offered therapy anyway, even if I need it, but I was hoping I didn’t need it. I don’t know. I don’t want to think about it. Whenever I think about what went on earlier this year about my diagnosis I get panicky, anxious and upset. It seems to hit a nerve and I have to stop thinking about it.

I hate feeling like this. We will see how things go. At least I have admitted it now. I have been carrying around these thoughts like a guilty burden. I have been secretly acknowledging the depression, whilst denying it in the hope it would go away and that no one else would find out. I feel like I am letting everyone down. I wanted to have a “happy ever after” for this blog and then I’m back here again whining about depression again. That isn’t what I wanted. Sorry.