Into the system…

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Posts Tagged ‘Dr Shock

Too much to say…

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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.

The ECT Experience…

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Whilst I was having ECT I never really wrote about it. I was in hospital with only mobile access to the Internet. I was exhausted, often in pain and not really in the mood for writing. Recently though I’ve been inspired by this blog and Seaneen’s appeal for ECT info to document my experience. I’m worried that if I don’t do it now, I’ll forget what happened all together.

Ultimately my experience with ECT was a failure. I had 11 treatments, some unilateral and some bilateral. I barely responded at all and in the end we gave up.

ECT was seen as the last resort. I was about as severely depressed as you can get and no one knew what else to do. I wasn’t sure about having it, but at the time I wrote that anything was worth a try. I think I was so depressed I didn’t really care what happened to me. I know I secretly wished it would go horribly wrong, so overwhelming were the thoughts about death.

I went into the treatment with a smidgen of hope as at least we were trying something. I felt little, but I knew my family wanted it to work. We had to believe it would work, as the alternative was too horrible to comprehend. Other patients at The Priory had been through ECT and come out the other end much improved. ECT had been lifesaving for them and I hoped it would be the same for me.

The procedure was a lot less scary than I had feared. We were woken early by the nurses, our blood pressure and temperature taken, then we were bundled into a taxi with the nurses over to Cheadle Royal. The Priory doesn’t have an ECT suite any more, so treatments were taken there.

There was a waiting room, where we’d sit waiting our turn. There was usually three or four of us being treated at the same time. Three from The Priory and a day patient from elsewhere. Eventually we’d be called into a prep room, where a girl would wash our forehead and neck and attach EEG stickers. Next we entered the treatment room. We’d climb onto a bed and Dr Shock would ask us how we felt. We would be attached to the monitors and then the anaesthetist would take my hand and try to insert a cannula.  This was where it got difficult to me. My veins are small and deep and finding one proved near impossible at times. Multiple attempts, hands like colanders and a number of bent needles later and we would be ready to go. After a few treatments like this, the anaesthetist ordered some microwave lavender bags, which I’d be given to warm my hands. ECT quickly became associated with the smell of lavender.

I’d never had a general anaesthetic before my first treatment and I didn’t know how I’d feel. I soon got used to the feeling. Twice a week for nearly 6 weeks, you have little choice. The liquid would ooze into my veins. I could feel the cold liquid flowing in my hand and then I’d drift off into a blissful sleep. When I was ill I’ve never had any other sleep as nice as that. Next thing I knew I was in the recovery area, oblivious to what went on whilst I was asleep.

Throughout my treatment and since, I’ve always been curious to see what happens in between those moments. I often wondered about asking if I could watch someone else go first, but was certain I’d be turned down. I know they apply a current to my brain and I have a fit, but what does it actually look like? Who does what?

A few times I awoke covered in blood. The cannula would slip out during the fit and I’d be left with a red tshirt. The first time it was a bit of a shock and slightly scary, but once I knew what had happened it was okay.

As we woke up, our vitals were taken regularly. Each of us would have a nurse, who would keep a close eye on us, administering pain relief if required. It was always required. An hour after our treatment we would be allowed up and given tea and toast, or water and toast in my case. Then we were bundled back into the taxi and taken back to the ward, where we usually went straight to bed.

At the time, the side effects weren’t so bad. I usually had a thumping headache, more so after the bilateral treatments. Sometimes I would ache all over. My jaw was often painful. My appetite was normally dodgy and I felt queasy from the anaesthetic. My memory seemed to be pretty much in tact. I’d written all my passwords and things down before I went, but I don’t think I ever needed to refer back.

I didn’t really mind the treatments, but I was frustrated at the lack of response. The night before each treatment we’d be given the BDI and would tick the boxes and I couldn’t see any improvement. I know my scores did improve a little, but one or two points is nothing when it is scored out of 60-something and the miracle I was hoping for never materialised. There were a couple of days after one of the early sessions where I became quite hyper and agitated for a short while, but that didn’t last either and could have been down to something else.

One of the others having ECT with me improved fairly rapidly, which was great news for her, but I remember feeling a little jealous. She was discharged from hospital before I’d even finished the treatment, although I think she had a couple of sessions whilst she was an outpatient. The other person improved gradually, but she did improve. She would have a boost for the first day or two after the treatment and the improvement would ebb away, but over time it seemed to ebb away a little slower. ECT definitely helped her to get better, although I don’t know how she is these days. I seemed to stay the same regardless. ECT wasn’t working for me.

Dr Shock would ask me each time how I felt and I never knew what to say. She would tell me I looked brighter, but it felt like she was only saying that to convince herself it was doing some good, not because she really believed it.

Towards the end, I knew we were running out of steam. I could see the medics were giving up. When the decision was finally made I wasn’t surprised but I was disappointed. I felt like a failure and I felt annoyed that it hadn’t worked. It was meant to be the cure and it failed. I felt like I should have tried harder to make it work. I worried it was my fault and that everyone thought it was my fault and that I just didn’t want to get better.

There is something to be said for it. It may not have actually lifted me out of my depression, but I think it did help keep me safe whilst I was at my worst. I suspect my insurance wouldn’t have renewed the funding if I didn’t need to be kept in hospital to have the ECT and at least whilst I was having the treatment I was often too exhausted and unwell to act upon the suicidal thoughts that were so strong at the time. Maybe if I wasn’t being told to wait and see if it worked, then perhaps I’d have been more determined to kill myself. I don’t know. I guess you never can know. Maybe I’d have been even worse if I hadn’t have had it, although I don’t know how much lower I could have got.

After the failure, came the assessment from Dr P and the diagnosis of Bipolar II Disorder. It was suggested that my lack of response to “traditional methods of treating depression”, showed that I wasn’t suffering from “straight” depression. I had suspected that for a long while before, but I don’t know why it took ECT to decide this as I know ECT can be used to treat Bipolar Disorder too. I am grateful for the ECT for accelerating this diagnosis, but it seems an awful lot to go through just to get another assessment.

The long term effects of ECT have only been showing themselves over the last few months. I didn’t think the memory loss was significant, but as you go through life there are reminders of what is missing. People mention things that happened and I have no recollection of them at all. Silly things like ordering a meal in a restaurant commenting that “I’ve not had this before”, only to be told that I did back in April when I went there with my parents. Not only had I forgotten my order, but I’d forgotten I’d even been there with my parents.

It’s not just from the treatment period either, but before too. A lot of last year has disappeared and I only have my blog and my family’s memories to remind me. Distant memories that were once clear are now fuzzy or gone completely. I have lost a lot more than I’d realised at first. They say that the memories will come back with time, but I seem to be forgetting more, not less. I don’t know if it’s just because as time goes on I find out about more of what is missing.

I don’t think my short term memory is that bad. I am forgetful, but I’ve always been a little. For most people it is the short term memory that is worst, but I seem to have got off fairly lightly on that front. I guess this is something.

I’ve alluded to this at other times, but I think ECT has had an effect on my thinking ability too. It’s hard to know for certain, as depression can stunt your cognitive abilities too, but I am not as sharp as I used to be. My partner often says that I’m slow. I am not very quick on the uptake at times. I find it harder to think and harder to solve problems. My arithmetic seems worse than before.My concentration is poor. Even when I’ve been a little high, I don’t feel as capable as I did before. Things I used to find easy can be a challenge. I feel like I’m a little blunted. I pride myself on my intelligence, yet I don’t feel as bright. I wonder if I’ll ever regain what I used to have and if this will improve.

Along with the memory and cognitive effects, there is a physical side effect. The right-hand side of my jaw has been problematic ever since. It locks and it grinds. Sometimes I can’t open my mouth at all. Other times I get shooting pain right through the side of my head, where my jaw is stuck or out of place. I don’t know if there is a solution, but I suspect I will be stuck with this for ever now. It may not be anything major, but it can hurt and is annoying.

I don’t think I’d mind these effects at all if ECT had worked. If I was now stable and free of depression these issues would be worth it. It’s just that for it all to be in vain, it seems a lot to go through for no gain.

I am still disappointed. ECT had been that final resort and was something I could hold in my mind as a possibility for change. For me, I always need to know that there is another option and this was just another one that we have exhausted. When I have run out of options then I will really give up. I don’t think I’d go through it again, even though for some it can work a second time when it had not the first.

All that said, even though ECT didn’t work for me, I still wouldn’t discourage people from trying it. You have to weigh up the potential benefit with the possible effects, but if it works, I think it is worth it. It is usually only used when all else has failed and in that case what else do you have to lose? I have seen it work for others, I am just jealous it didn’t for me.

Is it helping…?

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I’m fed up of people asking me if I think the ECT is helping. I really don’t think it is yet, but I hope that it will eventually. I keep being asked if I think it is. Dr Shock said she thinks I’m looking brighter. I don’t feel brighter. My bloke said he thinks I’m a bit chirpier. I don’t feel chirpy. I think it is just my mask confusing matters and hiding how I really feel.

Today, we had a walk as part of our afternoon therapy session. I wouldn’t have been safe on my own. I saw a broken glass bottle and I wanted to pick up the pieces and shred my arms with it. I saw a load of holly berries and I wanted to try and eat a load and see what would happen. I just still don’t want to be here. I don’t know if I dare admit that as I’m already on high level observations and high risk level. I’m going for a meal with my parents and bloke this evening. They’ve come to the relatives support group again. I think they must have found it helpful. I just don’t know if I trust myself but I don’t want to let my family down so I’ll just have to try and be good. I don’t want to be good though.

Anyway. I need to stop writing this on my mobile. It’s making my fingers ache! Take care everyone. X

Written by intothesystem

Tuesday, 17th March 2009 at 7:10 pm