Posts Tagged ‘ECT’
Am I Being Fair…?
A question that is plaguing me and my relationship at the moment.
My partner has been objecting to what I’ve written about our arguments lately. I am not sure he appreciates me writing about our relationship in such a public, but one-sided way. Maybe it is unfair to expect him to sit back without the opportunity to say his piece, but I need somewhere to work all of this out. I need to know if I am making sense. I need someone to listen.
He is of course right that I am only showing my side of the story and I am not giving him the opportunity to defend himself. Maybe I could let him write his own post, give his own argument, but I’m not sure it would be suitable for publication! ;) It is true though that much of what I have written has presented the facts and I am not trying to criticise or upset him with these posts. He did indeed call my illness a “stupid teenage fantasy” and does indeed make little snide comments about my blogging, so he cannot argue with that.
He tells me though that I do not realise how much the things I write hurt him and that I shouldn’t portray him as some big evil monster. I don’t mean to do that. He isn’t. We really do have our problems at the moment, but I don’t think he acts with any malice. I don’t think he gets any pleasure out of annoying or hurting me. He just doesn’t know how to deal with everything that is going on. I’m pretty sure he genuinely tries to understand better, but I am just not sure that it works.
One thing he said was that his sulking is not in any way aimed at me. He said that when he read about me stopping my medication he was really angry and that when he went off to sulk he wasn’t trying to manipulate me, he was just taking time out so he didn’t do or say something he may regret. That seems fair enough. There are times I have to take myself away from a situation. The problem is though I am unsure. Even if he doesn’t mean it that way, it still puts me on the back foot and makes me feel guilty. Of course he says that is my problem and that I shouldn’t think everything is about trying to hurt me. I guess it is my own fault for feeling guilty, but perhaps he should find another way of staying in control and maybe he shouldn’t give me the cold shoulder when I try and find out what is wrong.
When I said that our long conversation (argument) on Saturday night didn’t get us anywhere he was upset as well. He felt it did help and that we were getting somewhere. He argued that I am always seeing the negative in things and that we’re never going to get anywhere if I continue with that attitude. Yes, we did say things that needed to be said, but I am unsure if we actually got any closer to finding a solution. I know that he was trying though.
We had another one of those conversations on Sunday night. He said he’d been making a concious effort all day on Sunday not to make the biting comments I find so frustrating, yet I can’t say I noticed an improvement. This confuses me. Are things really not as bad as I think they are, but because of the negative nature of depressed thinking I am feeling things more acutely? Am I just making things up to taunt myself with?
We seemed to spend a great deal of time discussing the merits of twitter. I do think things have escalated on the blogging-hatred front since I started using twitter more regularly. You may remember that I wrote a blog post about my feelings on twitter about a month ago. I myself was sceptical of its merits, but I have come around because I do genuinely think it is helpful and dare I say it? I enjoy it. I enjoy being in the middle of discussion between an interesting group of people. I like the fact that twitter is taking my blog to new audiences. I like the fact it is quick and I can log my thoughts without having to dwell or develop them.
One of his arguments was that 140 characters is far too little to say anything constructive. I thought that too at first, but I am amazed at what you can actually convey through a few short messages. Thoughts after all aren’t logically constructed into sentences and paragraphs when you have them, so sharing a few snippets can still get across the same message.
His other was that he doesn’t understand why I want to broadcast little snippets of info to a bunch of strangers. He doesn’t really understand why I want an audience on my blog. I know I didn’t really start writing this for an audience. I started as I hoped it would be therapeutic, but I have found it helpful, interesting and encouraging to know there are people out there that care. I have met people who I do genuinely count as friends and I have received a great deal of useful advice and support. I wouldn’t get all that from a paper journal hidden under my bed.
As for twitter and an audience. I only really intended it to be aimed at my blogging audience. Little extra snippets of information for those that already read. Little updates for when I don’t have the words for more. It has developed into a new outlet though and also a new source of readers to this blog.
We also talked about me and my illness. His main argument was that I do not try hard enough to get better. This is an argument I hate, because it implies such a lack of understanding about mental illness, that I thought I could have changed by now. It doesn’t matter how hard I try, it isn’t going to take this illness away. I may be able to ease some of the symptoms, but that will be as far as it goes. Yes, I know that lifestyle changes can be useful and I even know that eating better and exercise can help, but it is not a panacea. The eat better, exercise more, be a better person stuff just doesn’t wash.
He is worried that I am pinning all my hopes of recovery on finding a wonder drug and/or therapy and that I am not going to do anything myself to get better. I am hoping that one day I will find a cocktail of medication that helps. Most of the people I know that have had some recovery have been aided in that by medication. It is often pointed out at The Priory that you should take a three pronged approach to recovery: medication, therapy and lifestyle change. By pinning my hopes for recovery on therapy and medication I am not being lazy, just realistic. I would also hope that the fact I have hopes for therapy (when the NHS finally get their ass in gear) does suggest I want to do some of the work to get better myself. Therapy is far from an easy process and involves a great deal of hard work, work which I am going to have to do.
As an example of how I am being lazy and not trying hard enough, he says that I haven’t done anything to improve my sleep, except take a few pills. I have tried medication, but I’ve been through the sleep hygiene stuff too. Admittedly I’ve made less effort in recent months, but only because I have given up hope. I have spent years swinging between hypersomnia and insomnia, although in recent years I’ve been firmly in the insomnia camp. I have tried all sorts of things and nothing has succeeded in restoring “normal” sleep. What is normal is questionable anyway, because there are times when 4 hours is fine, other times when 4 hours is no where near enough and even times when 4 hours feels too much. Sometimes I can have 2 hours sleep and feel fine. Sometimes I can have 2 hours sleep and feel awful. Other times I can have 7 hours sleep and still feel exhausted. I guess it’s all linked to mood, but I guess it also means my sleep will never be great.
He suggests I need to follow more of the CBT and self-help stuff we went over at The Priory. Setting myself a routine and activity scheduling. I do need to get back into a routine, but it is understandable that things go haywire over Christmas. I know activity scheduling was something that was always encouraged at The Priory, but I never really found it helpful. I also worry that this is just another means for exerting control. He can try and make me follow a routine he approves of and if I don’t stick to it, then he can get angry and tell me I’m not trying hard enough.
His latest suggestion is that I only use the internet/blog in the evenings to try and contain the time I spend on here, but I fear this is merely so he will be around at the time I’m doing it. Of course him being around will mean I will spend even less time on here because the automatic guilt-trip will be triggered and secondly, he will be able to keep an eye on me whilst I do it. When I tried to go online this morning, forgetting this had been suggested, he got angry at me and told me I was only allowed online at night and that I should do as I’m told. I had never agreed to following his suggestion, yet he was determined to enforce it. I am not sure I’m comfortable with his assumption that I will do as I’m told
I can’t remember what else was discussed on Sunday. I don’t exactly enjoy the arguments and I have found my short term memory seems to be pretty selective. Some of the bits that provoke the strongest emotion and reaction stick, but the rest slips through my hands like sand.
I do remember that I gave up before the bloke was ready to stop. I couldn’t take any more of the argument and at 2am or whatever it was I was too tired to discuss anything properly. He was annoyed at this, but I couldn’t help it. I didn’t want to start the discussion then anyway. It would be a lot easier to talk about such things when I’m actually functioning properly.
The thing is now I am confused and conflicted. I wonder if I’m being fair. I wonder if this is all my fault and if I am overreacting. I wonder if I am just seeing the negatives all the time. But things have got to the stage now that I am always suspicious of his motives. Is he trying to make me feel bad so that he can control me? Is he trying to guilt trip me into compliance? Is he just saying all of this to get his own way?
I wonder if anything will ever change. I really don’t know what to do.
Alison suggested on my last post we had some time apart and it is something I have thought about a lot myself, but I do not know how feasible it is. I hope that him going back to work will help. At least it will give us a few hours space. His cold is now improving, but his attempt to get to work this morning proved futile due to the snow. Both routes out of the village towards Warrington were difficult – one impassable and one almost so and he didn’t want to get stuck on the way back, so he turned around and came home. Unless it dramatically warms up overnight there’s little sign of him getting there tomorrow either. We’ve had another couple of inches since he got home this morning.
Even if he does get to work soon, a few hours apart probably isn’t going to be enough to help. Would a temporary separation be useful? It might make us realise what things we miss about each other and it might give me some space to get better. Our relationship was once long distance and it is true that absence makes the heart grow fonder. I just don’t know if he’d be happy about it and I don’t even know if I could. Things are not good at the moment and I wonder how Dr N and the CMHT will react if I am on my own. I wonder how I would cope. I worry that I would end up in hospital, perhaps not because he would get me sectioned or maybe even not because I couldn’t cope, but pretty much because there is no where else for me to go. I can’t exactly go home – my support is up here and I’d go mad after a couple of days with my parents anyway and I don’t really have any friends I could stay with. I don’t have anywhere else to go.
As has been mentioned before, I don’t think I am well enough to make any big decisions on our relationship whilst I am still in the acute throes of this illness. I am pretty sure things would be a lot easier if I was well. My illness has skewed the power relationship and I think that has escalated the worries about control. I think he wants to control me, because he wants to keep me safe. I am in a weakened position naturally, because he is my carer and ultimately if he wanted me in hospital he could make it so. Before I was his equal and I had things of my own and they gave me freedom. I had my career and my work friends, both of which I have lost through illness. I find it hard because I don’t feel I have anything of my own any more and that only adds to the feeling that I have no freedom anymore.
Admittedly we argued before I was ill, but it is true that arguments are a fact of life in relationships and things have been so much worse lately. The problem is, I can’t really remember the good times. A combination of depression and the effects of ECT means they’ve pretty much gone. I can barely remember our engagement. It makes it very easy to think that our relationship is all bad and maybe it should be over, when really things are just a little difficult at the moment and there is a lot going for us. NYE was our 7 year anniversary. That’s a long time and we must have been doing something right to get this far.
You would be forgiven for reading this post and thinking that our relationship struggles are the only thing going through my mind at the moment, but they are not. These struggles are the thing which I feel most able to write about, but on top of all this there are other struggles going on. I want to write about them, yet I am scared about doing so. The depression is pretty intense, but the agitation is back again and the only respite I have is my appreciation of snow. I love snow and it has been a welcome distraction from the worst of my thoughts. Sadly I know that as the snow melts that respite will disappear and I will be left with the misery that fills the rest of my mind. I do not relish that thought.
Back in time…
It felt very strange to see DP again yesterday. It was like going back in time.
On my way there I was trying to remember what he looked like, but all that came to mind was the fact he was bald. When I got to the therapy centre, it took me a minute or two to recognise the building. It kinda made me realise how fuzzy my memory is of last year. I still blame ECT.
Memories started to come back though. Silly things like waiting in the kitchen until he was ready, taking off your shoes (both of us without undoing them!) and the blue sofas lined up against the wall.
We didn’t dwell on the paperwork. CORE outcome measure form and a couple of consent forms and that was it. A pleasant contrast to last week’s 50 minute form filling marathon!
Then of course he turned to me and asked me to start. I knew he would sit there in silence for the full hour if necessary, so it didn’t take me long to get going. I had taken notes with me, hoping I could update him on the last 18 months quickly without having to say anything. Sadly he wanted me to talk over things myself. I kinda knew that was coming.
I went over the main points. Last summer, The Priory, February’s overdose, ECT, Bipolar diagnosis and since. All the stuff I’ve been over a million times now. I can’t really remember, but I don’t think he said much at this point. He never did say much. I think he was a little shocked though.
The conversation moved onto what use the sessions are going to be. He seemed doubtful as to whether there was any point in working together for only four sessions. I explained the theory – that it would give me a little support in the interim and help me identify areas to work on long-term, but I am not sure he agreed. I am wondering if he just doesn’t want to work with me again. I am worried that I might have scared him off. I don’t know. I feel quite paranoid about it all.
We talked about how things are now. He asked what the current situation was care-wise, family-wise etc. I filled in some gaps. We talked about my mood too and that being what it is at the moment we got onto the question of self-harm and suicide. I think he was a little concerned and possibly a little panicked. I do wonder if he is used to dealing with this, but then surely most people in therapy have considered such things?
He pointed out that my risk level means I am a “red flag” client and he will need to talk to the EAP about whether or not we should continue. I remembered this from last time. I was a red flag last year and I’m not sure there has been a time since when that status would have been lifted. I am wondering if he is using this as a way to escape me. The other EAP therapist didn’t bring it up, but nothing has changed really when it comes to risk levels. I pointed out that the EAP were aware of my situation when they took me on this time and I hope that means it won’t be a problem, but he said he still wanted to talk to them.
He asked me about a verbal contract too. He wanted me to give my assurance that I won’t do anything to harm myself whilst I am seeing him for therapy. A repeat of the request from the EAP counsellor really. I struggled to give it, not because I have plans to do anything, but for other reasons. I think part of the reason is not wanting the added guilt. The guilt I get from wanting to break those assurances, because the suicidal thoughts are still so strong. I feel bad for even having the thoughts. I guess my reluctance is also to do with the fact I don’t trust myself any more and don’t see the point if I can break my promise. I had given my assurance to people I wouldn’t act when I made the attempt back in February and it wasn’t enough. I have assured myself enough times that I shouldn’t act, yet it wasn’t enough in the end. There have been other times though that making a promise to someone has been enough to make me think more than twice, so maybe it is worth it.
Towards the end we talked about next steps.
He thinks I should be getting more NHS support at the moment. I think he may be right, but I wonder what support there is. What point is there in the crisis team? I’m perpetually in crisis and I don’t think it would be helpful. What point is there in contacting the CMHT or asking for a urgent psych appointment? Useless social worker, J is on holiday and Dr D didn’t know what to do with me when I saw him last month anyway. What point is there in bothering Dr N any more than I already do? He has nothing more to offer me.
As we finished up, DP told me to email or text if I need to, which I am grateful for. I guess the fact he offered that option shows he cares and is trying to help. He certainly didn’t have to.
Overall the session was hard work and quite strange, but I left feeling relieved. I think it was helpful. I don’t know though. It is hard to tell.
In other news, today I had a phone call from the therapist I saw last week wondering where I was. The EAP had forgotten to contact him to say I wouldn’t be seeing him again. I wish I’d cancelled myself now, but I just didn’t know what to say. I feel bad that he was waiting for me. I hope the EAP pay him for the mix-up!
The ECT Experience…
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.
Freedom is regret…
I’ve had the New Post page open all day, yet I’ve still not written anything. It is weeks since I last wrote a proper post. I still have a lot I want to say, but the words just aren’t flowing at the moment. They run around my head in a flurry of thoughts, but I can’t seem to convert that stream of conciousness into type.
I don’t really know how things are. On some levels I am improving. I am functioning a lot better and have been a lot more productive lately. I am doing things, going places. In many ways I could maybe even pass as okay. On a good day maybe even well!?
I’m enjoying Creative Remedies more than I expected and it is proving good to get me out of the house. I have been working on the website for them and I am quite pleased with the results. I struggled at first with concentration but I managed to get it together in the end. It just takes me longer to do anything these days. My brain just isn’t what it used to be. My thinking has slowed down and my memory and concentration aren’t there. I do wonder how much ECT has affected my thinking power for life. I wonder if I’ll ever be able to work at the level I used to be at.
I have had a little more freedom of late, which I guess comes from people thinking I’m a bit better. I’ve got the bus to and from Creative Remedies a couple of times and spent a little time wandering around town on my own or out with the Creative Remedies folk. It feels good to be out and about. It feels good to be out with others, not just my bloke. It feels normal. It isn’t normal to not be allowed anywhere on your own.
I’ve also had the odd evening at home whilst my partner has been out. This week, I’m even spending three days alone, whilst he’s doing some contract work for his old employer. Time alone is never easy though. I wish it was. I both relish and dread it. I look forward to the freedom and the time to do as I please, but dread the thoughts it generates. There is the constant wish to “make the most of the opportunity”. The thoughts that I should just get on with it and kill myself. Getting through each period of time should be an achievement, but it just fills me with regret. Regret that I didn’t take the opportunity. Regret that I’ve failed yet again to end my life. Regret that I didn’t even try.
So of course, nothing has really changed. The bottom line is I still wish I was dead. I still think about making that wish a reality, every single day. I still struggle to get through a day without hurting myself. I don’t know if this is ever going to change. It feels like it has become the norm. I think it would be strange not to feel like this.
On the outside I may be improving. I may be functioning better and superficially at least I seem okay, but the inners are still faulty. I am frustrated that despite any improvements I still feel awful most of the time. I am coping and I getting through each day, but I don’t know why. I am frustrated that my thoughts still race, the impulses are still there and I still want to die. I don’t want to give up on recovery, yet I find it so hard to keep on.
A label…
Earlier today, I had my second opinion meeting and review with Dr P. I wasn’t given much notice. The ward doctor, Dr C, just said he will be over in a few minutes and fifteen minutes later I was sat in a room with him and Dr C answering questions. It was a bit like the nth degree. My memory is sketchy and I struggled a little, but I gave him an overview of my moods over the past few years. He was keen to find out if I’d had any ‘up’ periods and although I have, I don’t want to exaggerate any of them so didn’t really know what to say. I just tried to explain how I was at various points in time. He had a little bit of knowledge about my history before he started and seemed keen to get an overall picture of my mood cycles. He asked about my agitiation also. It was a different approach to Dr G, who was more keen to get an idea about how I felt and what I thought. They’re polar opposite doctors, but both good at what they do.
Anyway, Dr P eventually said that based on my lack of response to ECT and anti-depressants he believes I have bipolar II disorder and thinks that ADs are not going to be helpful. I hadn’t realised that my lack of response to ECT could be seen as a test for bipolar. If I had recurrent depressive disorder, I’d likely to have had some positive response to the ECT, but because I haven’t, it probably suggests that anti-depressants are not going to work for me. He talked about how some people with bipolar II do not respond to ADs or traditional treatments for depression such as ECT and that was why he was suggesting that diagnosis.
He wants to start me on an old school mood stabiliser, so is putting me on Depakote. I am a little scared as I’ve heard bad thinks about Depakote, but everyone responds differently to different drugs and anything has to be better than the current situation. He is keen to take me off anti-depressants altogether. I’m glad it’s not lithium anyway.
He asked me what I thought and said that he suspected it didn’t really come as much of a surprise. At the time, I said not. I told him I knew a reasonable amount about the condition as I had friends with it and I had in the past suspected that it fitted. Thinking about it since though, it has been a bit of a shock. I’ve been seeking a diagnosis for so long and not received one, so to finally have one is a bit of a shock. It’s an unpleasant surprise too because I know that it can be an awful condition to have and I’m not sure I really want it, even if it does fit. After all, the last year has not exactly been a barrel of fun.
Dr G doesn’t yet know the outcome of the meeting. She isn’t in work today, but she is coming in tomorrow to see another patient so Dr C has written her a letter telling her about the meeting. I may end up seeing her tomorrow to discuss. I’m a little scared about her response to all this as I’m not sure what to expect. I presume she was aware that this was a possibility, because she wouldn’t have got Dr P involved if it wasn’t. Everyone is aware that Dr P is a specialist in mood disorders, especially Bipolar, and if anyone is going to spot it, it will be him.
Generally, I am still absorbing the information. I have suspected I would eventually end up with this label for a while, but it feels weird to finally have it. Dr G has avoided it so far and I wonder why, yet she obviously had her suspicions or she wouldn’t have got Dr P involved. I just hope she agrees with what has been said and is comfortable with it.
I think this has given me a little bit of hope. Things are changing, which is something positive. Hopefully, the new medication regime will improve the situation. I know it isn’t going to change things overnight, but it might pick things up. There is also the fact that this diagnosis should ensure I get more support. The CMHT referral is going through and they are trying to arrange a CPN before I am discharged from The Priory. The bipolar II diagnosis will give that referral more strength and also mean that the NHS pays more attention when I need support.
Aside from that meeting, I also have my GP coming to see me later today. I am a little nervous as there are a lot of things I have to cover with him, but he is lovely and I need to get over that fear. We shall see anyway.
Online…
I wrote a long post about a week ago with the intention of posting it when I got internet access, but I seem to have lost it.
I now have internet access. I’ve worked out how to use my new upgraded mobile phone as a modem in Linux and it appears to be working for the time being. I struggled with it for hours recently, but this time I just plugged it in and it seems to do the trick.
I have very little else to say as I’m really, really tired, but I will update properly soon. ECT really is draining. Even more so, when the canula falls out leaving you and your clothes completely drenched in blood. It’s really not what you want to wake up to.
Anyway I must sleep before I collapse. Night x
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.
Written by intothesystem
Thursday, 3rd February 2011 at 9:35 pm
Posted in Into the system...
Tagged with blogging, childhood, clinical psychologist, commenting, concentration, dental hospital, diagnonsense, diagnosis, dissociation, dog walking, Dr M, Dr N, Dr Occy Health, Dr Shock, ECT, family, HR, Lamotrigine, medication, Mirtazapine, mood, NHS therapy, occupational health, PD, personality disorder, phased return, primary school, psychologist, psychotherapy, quetiapient, Reboxetine, Rehab Consultant Woman, return to work, therapy, therapy assessment, timeline, TMJ, work, x-ray