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Posts Tagged ‘side-effects

I feel crap…

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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.

Tummy Troubles…

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I am still struggling with the tummy troubles. I have been taking the higher dose (120mg TDS) of Alverine Citrate for a few weeks now and I do think it has helped a little, despite the fact I have also increased the Reboxetine to 8mg in that time. I was getting less cramps at least, although I was still having problems with diarrhoea or constipation all the time. My appetite had improved a little, which must suggest things have been a little better.

Unfortunately that slight improvement has been completely negated by the events of last night. A warning – this post definitely scores high on a rating of too much information!

I had been feeling fine and had enjoyed my dinner of roasted ham, mash, kale and carrots. As I was getting ready for bed and just settling down to watch Newsnight, I got a sudden shooting pain in my tummy and next thing I knew I’d had a somewhat messy accident. :S :( I was so shocked and upset, it took me a second to act and jump into the bathroom (which is within a metre of the bed), although by this point it was far too late anyway. The bloke was horrified and just shouted at me, called me disgusting and hid in the back bedroom, whilst I stripped the bed and took a shower. :( I was feeling pretty rough by this point and thought I might be sick as well, but managed to keep that end under control! The bloke eventually realised I wasn’t very well and that he was being unreasonable and he apologised and started to make the bed. I didn’t know what to do with myself. He wasn’t going to let me in the bed after that, so suggested I got the air-bed out! At least that is plastic and cleanable in case of further episodes. I didn’t expect to sleep much anyway, so decided to do this and settled down under the spare duvet on the lounge floor.

I was awake most of the night and felt pretty rough, but managed to survive without any further accidents. I’m still feeling pretty dodgy now, although by now I could just be hungry. I am too scared to eat anything though.

I don’t really know how to say this, but the poo didn’t look good at all. Very dark brown, sticky, runny and lumpy including some undigested carrots. Not nice at all. The fact it happened so suddenly suggests things aren’t very happy in there either. If I could have done anything about it, I would have. There was no warning at all, except for the shooting pain that came with the attack. It literally came out and exploded like the lid off a pop bottle that had been shaken up. bleugh. Sorry. You don’t need to know that.

The bloke wanted me to book an appointment with Dr N, so I am seeing him this afternoon. I am not sure what he can say or do. I have no idea how I am going to tell him without dying of shame. Part of the reason I am writing this, is to practice describing what happened! I am far too British and shy to talk about poo. Even with a doctor. It has been hard enough to tell him of my tummy troubles so far, but this is an extra level of embarrassment.

I wasn’t sure about writing about this here as it is so embarrassing, but it is the latest thing to happen in the whole tummy troubles saga and something so horrible seemed worthy of note. After all, this blog is an account of some of the more grim elements of mental health. Coping with the side effects of medication is a big part of dealing with mental illness, so I may as well be honest about it.

My bloke was very shocked and not very impressed. He wants me to stop taking the Reboxetine if that is what is causing this. He said he doesn’t like living with an 80 year old. I agree. I don’t enjoy feeling like one.

I had been struggling with the increase in dose aside from this. My sleep has deteriorated and I only find I can sleep properly when the dose wears off in the morning, when I should really be getting up and taking the next dose. It takes ages to get to sleep, I am waking up all the time and struggling to get back off to sleep and I am having nightmares and feeling restless. It is exhausting. I was getting palpitations at night too, immediately after the increase, although that seems to have settled down a little after a couple of weeks at the higher dose. I felt really low in the first week or so too, but that also seems to have improved over the last couple of days, so maybe it is starting to have a more positive effect now. That said, I feel crappy today after the night I’ve had!

I am too scared to stop the Reboxetine though. I don’t want to go back to how I was before. I don’t want to end up really depressed and suicidal again. The perpetual low mood and vague depression of late is draining enough, but that constant despairing depression is much, much worse. I don’t know what alternatives there are. Maybe I should just go med-free and sod all the drugs and their stupid side effects. I still wonder if my mood would have resolved itself a lot faster if I hadn’t have started taking bloody medication. Then again, it may have killed me first.

In good news. I got my driving license back!

I now have a 1 year license, so I need to stay sane over the next year or I will lose it again. Apparently, I will get a form 3 months before it expires to request a renewal. They will go through the medical enquiries again and decide if to reissue. No doubt it will take 5 months again to do that, so I will not be able to drive again for a wee while, but I guess we will see how it goes next time. If I get worse or am told by my doctors to stop driving for whatever reason, I have to let them know and presumably I will have to wait months for them to decide again, so I hope that doesn’t happen.

It is great to have my car back. I am looking forward to going places and having my independence again. I think it will make a big difference in helping my recovery. Being able to go where I want and not having to rely on public transport or lifts from the other half is going to be a massive help. I have a lot more choice about what I do with myself and will be tempted to go out more.

I had a drive on Saturday afternoon after I’d insured and taxed it and it didn’t feel too strange to be back at the wheel. The bloke went with me and we made it in one piece. My left arm has remembered where all the gears are and it felt pretty natural, so I am glad I hadn’t forgotten it all.

On Saturday night we went out in my car and got pulled over by the police! I wasn’t driving, the bloke was. It had flashed up on the policeman’s dash that the car was uninsured – obviously the database hadn’t been updated since I had only insured it that morning. I am glad I wasn’t driving or I’d have panicked. I would say I’d have shat myself, (I think I did on Saturday night!), but I’m not sure that’s appropriate now! *blush* At least we can say the police are on the ball! We were off to a beer festival and although my bloke was only going to have a pint as designated driver, we decided not to take the risk of being pulled over again later, so we left the car and got a taxi back. We went back to get it on Sunday morning and I took my first solo drive, driving my car back. I was okay, although I had forgotten which lanes I needed to be in a couple of times, so I made life harder for myself.

Anyway, I need to get ready for my doctors appointment. I haven’t got dressed yet and am just lying on the sofa with a blanket. Walking around makes me feel worse, so the temptation is to lie here all day. I have a meeting to go to this evening though, so will have to get up eventually.

Edit (3pm): Appointment with Dr N was very embarrassing and not too much help. I had been taking senna daily, plus the occasional dose of lactulose to counteract the constipation I was struggling with, but he thinks that won’t help on the maintaining control front, so I should stop that for now. If I don’t take it, I usually end up in pain and bloated from the constipation within a day. He has given me a script for something else to take if that happens, so we shall see how we go.

We talked about coming off the Reboxetine, but he didn’t think that was worth the risk at all. We don’t know if my mood picked up spontaneously or if the Reboxetine helped, but either way, my mood is a lot better and it doesn’t seem wise to mess around with it. I may have to drop the dose to 6mg if the problems persist, but I was struggling enough on that dose, so don’t suppose it makes much difference.

We talked about sleep and he asked if I wanted to try more sedatives, but neither of us really saw the point as they don’t seem to help all that much. He made the suggestion that actually getting back to work and having more brain stimulus may help, which in theory is true, but I never slept that great when I was at work. Even when I have been busy lately, it hasn’t made any difference, so I’m really not convinced by this. If anything if my brain is busy during the day, I really struggle to slow it down at night, especially if I get anxious too.

Mentioning work, I told him about seeing Dr Occy Health again on Thursday. He thinks I should push to agree a planned return to work as having a structure and plan may help give me something to aim for. I think he is right, although I am wary of the risk of too much, too fast. I told him about going in a couple of times and he agreed that was promising, although I also said that my work are very hesitant to let me rush back. They are being very cautious about how much I can do and when I can do it. I actually got told off for doing work-related activities whilst I was there the other day. We will see though.

Other things…

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Aside from the therapy assessment, there is a whole host of other things that I want to write about. I don’t really know where to start, but I’m going to have a go, because I think it may help me to get some of these thoughts down at last.

I need to start giving myself some more time. I’ve taken a twitter hiatus lately to try and free up some time, but it doesn’t seem to have made any difference. If I was spending an hour a day or whatever (probably more like 3 if I’m honest!) on twitter, I want to know why I don’t have an extra hour spare each day?

I am not sure if I prefer to have twitter in my life or not. Leaving twitter should at least reduce the number of arguments with the bloke – twitter is quite often the trigger for them, but whether or not it really has remains to be seen. He will probably just find something else to criticise. If he gets to win the argument on twitter, he will go back to trying to get me to completely stop blogging as well.

It should in theory give me more time to do other things, but I don’t think it has made much difference. It is very much true that whatever you have to do, will always expand itself to fill however much time you have to do it in. It is the same in that I haven’t worked for 2 years, yet I seem to have filled my time with other things. I don’t quite know how I would squeeze work back into my life, although I’d work out how to somehow I guess.

I do feel like I’ve lost something without twitter. It gave me two things. A feed of interesting information about the world in general and a more personal support group from the madosphere. I am missing both of these for different reasons.

The lack of general stuff leaves me feeling just a little bit behind. Twitter is great in that it can keep you up to date with things, real time. I have to go to more effort to find out things and to keep on top of the latest goings on. If a band that I follow releases tour dates, they will usually tweet about it. Now I have to wait until I spot them on some listings or on their website. If someone posts a news story about something I’m interested in, chances are I’d see a link to it on twitter pretty quickly. I am having to pay more attention on BBC News to spot things of interest. I guess I can do without this info, but when you are used to having it fed to you all the time, it is weird to go back to having to look for it. Twitter is certainly convenient. You can pretty much find anything on there if you wanted.

I am missing the support group side of things too. I feel that by stepping away I am neglecting people and I really don’t want to do that. I hope that people don’t take my hiatus to mean I am not interested in them or don’t care about them any more. It is not about that at all. I feel like I am letting people down by not being there all the time. Of course I miss receiving the support of my twitter friends too. It is nice to know that there is nearly always someone out there to talk to if you feel like it. It makes the world a little less lonely.

I do miss it, but a lot less than I thought I would to be honest. I can live without it, which maybe surprises me a little. It is convenient though

I don’t know if I will go back, stay away longer or perhaps just change how I use it. Maybe I will go private for a bit? I don’t know. If you are waiting for me to go back though, don’t hold your breath.

I didn’t start out with this post to write about my twitter hiatus, but there we go. It was something I wanted to explain on my twitter feed, but hardly possible with 140 characters. At least by saying it here, I can feel like I haven’t gone without explaining myself.

_______

So what else is there?

Physically, I am struggling. I have been suffering with persistent “tummy trouble” and irritable bowel issues lately. It has been there for months now. I was too embarrassed to say much at first (no one really wants to share their toilet habits do they?) and I thought it would improve, but it just got worse and worse and has been making things pretty rough. Constipation, diarrhoea, both, often with urgency, occasional vomiting, frequent nausea, awful tummy cramps that rival the worst period pain, chest tightness/pain, bloating and lack of appetite… None of which are particularly fun and when it all happens at once it makes you feel pretty awful.

Dr N and I are both pretty sure it is the Reboxetine to blame. I saw the locum last week as Dr N has been on holiday for a few weeks. He got me to have a collection of blood tests to see if there was anything else to explain things, but they didn’t bring anything up. I phoned up for the results on Tuesday and the receptionist reeled off a long list of the ones that were clear, but said I should come in to see the doctor about my liver results. I had a suspicion that this would happen, as it has done in the past. Apparently, one of my liver hormone levels is slightly higher than it should be, but it has been for some time and it is actually a little better than it was earlier this year. The other doctor probably wasn’t aware of this, so wanted me to see a doctor, but Dr N wasn’t worried about it. He did tell me that I should really keep any drinking to a minimum though, as my liver will struggle with any heavy drinking. I don’t tend to drink very often or very much anyway, so this isn’t so much of a worry, but it is a little concerning if I am going to be taking this medication in the long-term. Dr N thinks it will go back to normal if/when I stop taking the Reboxetine and joked that I can hit the booze then, whilst chastising himself for being a bad doctor for saying so. I don’t relish the thought that my liver results make me look like an alcoholic though. It is probably worth trying to be careful for the time being, I guess.

When I last saw Dr N about 6 weeks ago or something, he started me on alverine citrate as an antispasmodic, but so far it hasn’t helped all that much. I am having a few less of the sudden desperate trips to the loo, but still struggling with the pain and diarrhoea/constipation a lot. Today, he’s decided to double the dose, so fingers crossed it will have some impact. I am not sure I can carry on with these kind of problems for much longer. How anyone survives a life of IBS, I have no idea. Hopefully for me this will be temporary and I guess if it is caused by the Reboxetine there is always the option of stopping the meds, but I am not sure I like that idea.

The only good thing about all of this is that I have lost quite a bit of weight. Although that possibly isn’t such a good sign for my health. I put on a stupid amount of weight at the start of this year. Considering I wasn’t eating that much because the food was disgusting, I think I put on about a stone whilst I was in hospital in January and that continued when I came out. I don’t actually know heavy I got, because I stopped getting on the scales when it went over a certain number. I have pretty much always been overweight, although it probably bothers me a lot less than it should do considering my weight is not good for my health. However, over the last 6 months my appetite has disappeared and the weight has been falling off, without much effort at all. I have been more active over the summer, especially when I was travelling, but I think the loss of appetite has made the biggest difference. I often feel too ill to eat and most of the time I could quite easily go all day without eating anything. I am fed, because the bloke does virtually all of the cooking, but if he wasn’t around I’d live on the occasional bit of toast or the odd crumpet. I have lost all of what I put on earlier this year and more. My weight has yo-yoed a lot, but I am now somewhere near the lowest weight I have been since I was about 17. Admittedly, I am still many stone overweight, but I have lost over two stone and getting on for three. My clothes which had all got too small are now all too big. I am fed up of having nothing which fits properly, but I don’t really want to spend too much on new clothes if my weight is still changing. I have cleared a lot of stuff out, but I am reluctant to get rid of stuff in case I put the weight back on. We shall see.

Unfortunately, the way I am feeling physically hasn’t been helping my mood at all. In general, my mood has been dropping off over the last couple months. I felt a lot better during the earlier half of the summer than I did in the latter half and I felt a lot better 8 weeks ago than I do at the moment. At first, there were just a few warning signs and I did my best to ignore them. Whenever I noticed them and started to worry, I tried to stop myself because I didn’t want it to be a self-fulfilling prophesy. Worry that I was getting worse, so I got worse. Unfortunately, that strategy doesn’t seem to have helped much, as my mood seems to have dropped regardless.

I haven’t wanted to tell anyone that I am not feeling so good. I am disappointed that my recovery has stalled and almost feel ashamed. I wanted this time to be the time where I get well and stay well. Instead it’s a return to the old “one step forward, two steps back”. I am worried that if I am getting depressed again, then maybe I am to blame for it all. I wish I had made more of the time when I was well, because I don’t think I really appreciated how much better and easier things were.

I hadn’t wanted to write about it here, because I was worried about what the bloke would think, but he had noticed the drop in my mood, despite my best effort to carry on and pretend that nothing had changed. I didn’t and still don’t want to worry him. I do not want to go back to how things were when I was really ill.

I wasn’t sure I was going to tell Dr N today, but he knows me too well now and I think he could tell before I even said anything. I was there about the tummy trouble, but he asked me about my mood and I couldn’t tell him that all was fine. He seemed sad and a little concerned, but he was reassuring too. I think I feel a little better now that I am not hiding it so much.

Thankfully, although things have dropped off, they are still better than they were a year ago or back in January. Most of the time they are still a lot, lot better, but I’ve been having some bad days. Last Wednesday was really rough. I felt truly awful all day. Cried on and off for most of it and at one point instead of sorting out the huge mountain of washing I’d put on the bed, I just lay down next to it and crawled under the covers for a while so I didn’t have to face it. I pretty much cried myself to sleep, but then woke up in a panic that I had less time to get everything done. We had guests around for dinner that evening and the house was a mess, so there was plenty to do.

Unlike usually when I have been depressed, I am not especially suicidal. The thoughts come and go, but it is not like before. I was chronically and painfully suicidal for so long, I thought it would never go away, but it did. Over the summer, I stopped wanting to kill myself. I had started to see the point in life and recognised that I could have a future where I didn’t feel at mercy to my moods or awful all the time. Thankfully, despite the fact I have felt pretty low at times, the suicidal ideation hasn’t come back with such ferocity. I think I have retained the hope that I can be well again. I had lost that before, but Reboxetine has given me that back. I thought I was always going to feel so depressed that I didn’t see any point in life. There are times when I feel like that again. When I think about relapse, I get so frustrated that again I am going backwards. This makes me feel pretty hopeless and I wonder what all the point is. I sometimes just want to throw in the towel and give up, but I am resisting. Occasionally, I do want to die. A lot of the time I don’t really care if I live. Even when I have been well, that hasn’t really completely gone away, but I am managing. The thoughts pass and for now I can handle them. Hopefully, it will stay that way.

I told Dr N today that I do think there is something in the seasons. He has asked me in the spring when I started to feel better if I thought there was and I said I didn’t know. When the Reboxetine showed the first signs of helping earlier this year, it was at the same time as the weather improved, so we weren’t sure if it was one or the other or both. Often my worst times have actually been in Spring, when most people are starting to feel better. However, I think about it now and I think the seasons do have some form of effect. My mood has definitely dropped in September/October for the last three years. Last summer I was better than I had been during the rest of the year (although still much, much worse than I was this year), but things went downhill from September. The year before was generally awful from June onwards, but it wasn’t until September that things completely fell apart and I first ended up in The Priory in October ’08. I used to struggle in October whilst I was at school too, but I always put that down to an increased workload and the fact it was usually a time for deadlines and the ramping up of rehearsals for Christmas concerts and the like. So maybe there is something in it? I don’t know. I just hope that January/February 2011 isn’t as bad as 2009 or 2010.

Anyway, I see Dr M on Monday. Dr N told me to mention the seasonal thing. He said it is worth knowing and perhaps we should be aware of the rough cycle of my moods as it may help us pre-empt things. I have tried to be aware in the past, but it is hard when you often forget how you have felt before, even when you try and keep track.

He said that she may choose to raise the Reboxetine, but he is worried about the side effects. I had of course thought of this too. I considered doing it myself, but thought I had better see what she said first. I am worried about the side effects too. Things are so bad on that front, that it may not be wise. It’s a bit of a chicken and egg problem, because the side effects are making my mood worse, but to counteract that drop in mood, I will probably have to make the side effects worse. I don’t know what is worst. It’s a hard balance to strike. I don’t think I can tolerate the side effects getting any worse unfortunately. They are trying my patience enough as they are. I had hoped that when I was settled on these meds, the side effects would subside and although some of them have done, the tummy troubles just seem to get worse.

Anyway. I have written enough for now. This is a long post and I must try and get to bed. I have been waiting for the bloke to come home from playing computer games with friends, but he is not back yet.

Good days, Bad days…

with 12 comments

I’ve had a lot of good days lately. My mood has picked up sufficiently that I am feeling almost “normal” at times now and certainly manageable at others. I have actually felt happiness or contentedness, something I wasn’t really sure was possible any more. My concentration has been improving and my confidence is growing.

I have started to contemplate the idea that I may finally be heading towards some form of recovery. Maybe, just maybe, we have found the drug that works, despite the problematic side effects.

I have been foolish though in thinking the bad days had passed. I had hoped that I wouldn’t feel that bad again, at least any time soon. I really didn’t feel good yesterday. I woke up feeling low and felt worse as the morning went on. For the first time in a while I felt seriously suicidal, as opposed to the passing thoughts that had been floating around, but which I could brush off relatively easily. I was having to really fight the urge to just thrown in the towel. I felt anxious and uneasy. I’ve been struggling with strange dreams and nightmares lately and they were bothering me. Everything just felt wrong somehow. I wanted to crawl back in to bed and hide there. It felt like nothing had changed. I thought I was past all that, but I was wrong.

Things did start to improve again yesterday evening, but I am feeling a little shaky still. I feel like I’ve been knocked off balance and I’m struggling to right myself.

I am trying to tell myself that this is normal, recovery isn’t a smooth process and bad days are to be expected, but it doesn’t ease the disappointment. Telling myself this didn’t make yesterday any easier.

I hope that things will pick up again, but I am worried that this will set me back. One of the things I struggle most with is the idea that I will never be completely well again and there is always a fear of relapse. A bad day is like a mini relapse and it makes me question if it is all worth it. What is the point in carrying on, if in 6 months, a year, 20 years I end up severely depressed again and try to kill myself? My thinking may be screwed up, but I just wonder if I may as well get it over with.

I had been thinking about going back to work. I do miss it and I’ve been missing it even more when I’ve felt okay. I wonder why I am not there. I know I have only just seen Occy Health and I agree that I’m probably not ready to go back just yet, but I was starting to think that I will be able to do it. Even 3 or 4 weeks ago when I was there, I doubted it would ever be possible. A run of good days has made me think it is, but this bad one has put the doubt back. I worry that it would only take a couple of bad days at work and I would be back where I was before.

I’m still really struggling with the future. I panic when I think about what lies ahead. I am scared of therapy. I am scared of going back to work. I am scared that I will relapse. I am scared of commitment in all shapes and forms. I am scared of getting married. I am scared of buying a house. I am scared of getting old.

I am frustrated, because I was meant to be seeing Dr M on Thursday and I got a phone call today to say she has cancelled. I am disappointed, as after yesterday I felt I could really do with seeing her again soon. I wanted to discuss the Reboxetine. I think it is time to increase it to the “therapeutic dose” (4mg b.d.). I hope that those extra 2mgs will be enough to stave off the bad days. I just hope it isn’t enough to tip the side effects into not-worth-it territory. She was also going to discuss what we can do to ease the side effects, particularly looking at sleep again – the insomnia is the biggest problem. I quite wanted to know what ideas she had come up with since I’d last seen her.

I now have to wait another 2 weeks. It is going to end up being 6 weeks between appointments by the time I eventually see her and we were aiming for every 2-3 weeks, so that’s not so good. It may still be better than the CMHT, but I could have done with seeing her sooner.

I guess I will just have to manage how I am. We will see what happens. I’d like some more good days.

Reboxetine…

with 27 comments

I’ve been taking Reboxetine for a couple of months now. I started on a stupidly low dose and even with that I started to struggle with side effects. It has been increased a couple of times now and the side effects are a nightmare… BUT I THINK IT IS WORKING!

Reboxetine is meant to be taken in divided doses; 4mg morning, 4 mg at night, but I haven’t even got that far yet because of the side effects. One of the biggest problems is insomnia. I started on 2mg in the morning which wasn’t so bad, but then they needed to add the night time dose and that pretty much stopped me sleeping at all. I couldn’t even tolerate taking 2mg at night without it keeping me awake. So they decided to move the full 4mg dose to the morning, which was a little better. I still wasn’t sleeping very well (around 4 hours a night), but it didn’t seem to make things much worse than normal.

The dose was increased though about 3 weeks ago and we now have a problem. I can’t really take a larger dose all at once because Reboxetine has a fairly short half life and wears off pretty quickly. It was suggested I took 4mg in the morning and 2mg at lunchtime. The problem with the lunchtime dose is I often forget. If I’m out and about I don’t normally remember to take it with me or even if I’m home I keep telling myself I’ll go take it and never do. If I end up taking it mid-afternoon or evening I have a nightmare trying to get to sleep. If I take it late at night I usually get to sleep initially, but wake up an hour or two later and spend the rest of the night awake. Even if I take it at the right time I still have a problem sleeping. The only time I seem to be able to sleep properly is around 7am-10am in the morning when the meds have worn off, when ideally I should be getting up. I am struggling with the lack of sleep and I’m pretty sure it isn’t helping ease my headaches.

Aside from the insomnia there is a plethora of other side effects to contend with:

Sweats are a big problem and at times I get so hot I seem to start shaking or I feel faint and dizzy. This happens even when it is really cold outside and I’m wearing short sleeves. I must look ridiculous going around in short sleeves when everyone else is wrapped up in coats and scarves. I end up carrying my coat around everywhere because I can’t bear to wear it, but that means I get wet!

The Reboxetine has killed my appetite too. At the moment it is not unusual for me to eat nothing all day, for my bloke to cook me dinner and for me to eat half of it and then give up. The only thing I seem to want to eat is sugar. Everything else makes me feel sick, especially chicken for some reason. I don’t know if that has something to do with the fact I spent a weekend throwing up a couple weeks ago and one of the things I’d eaten was a chicken slice, but it’s a little annoying. I’m fed up of the nausea. It does have an upside though. I have lost a bit of weight over the past couple of weeks, although I’m sure if I wasn’t just eating sweet things then I probably would have lost more. I may be eating less than normal, but I think I probably eat healthier than this usually.

I am still getting the occasional attack of upper abdomen/chest pain too. It was assumed this was down to acid reflux and it does seem to have eased off over the past couple of weeks, so maybe the omeprazole has helped on that front. I just hope it doesn’t get worse now that I’ve completed the course of meds.

Add the common medication annoyances of constipation and dry mouth to the list and you have a pretty comprehensive list of side effects. The stuff is making me feel pretty rubbish, on the physical side at least.

The side effects do seem to ease off a little when my body has had a chance to get used to the dose, but it is really not fun in the meantime. Dr M is pretty concerned about the side effects too. She has been reluctant to increase the dose each time I’ve seen her, although she knows she needs to. I’m not even on the recommended dose yet (4mg b.d.) and she thinks I will probably need a high dose eventually, so that means I’ve got a few more of these increases to tolerate. I hope that by persevering the worst will pass, but I know that every time the dose is increased again, all the nasty side effects will be back worse than ever. I don’t know if I can handle it getting any worse. I almost wonder if she should just stick the dose up to full strength and see what happens. I think I’d rather feel absolutely dreadful for a couple of weeks, rather than pretty rubbish for a couple of months. I just don’t know if I’d tolerate it or not.

Dr M even seems to be considering taking me off the Reboxetine because of the side effects, but I am loathe to give up on it yet. I can feel it improving my mood and that is a big thing for me. It is the only antidepressant to have done that without sending me completely doolally. I have tried so many different antidepressants and other medications that I had kinda given up on the idea that I’d ever find something to lift my mood. This has changed that. I now have some hope that medication may eventually help me.

I hate though that I find something that may actually help my mind and my sodding body won’t tolerate it. If I find something my body can tolerate, it does nothing for my mind. Why can’t I have both? There must be some meds out there that will work and not make me feel ill?

So, yes. The side effects may be doom and gloom, but I do think it is working. My concentration is improving and I feel able to do more. I don’t actually mind getting up in the morning now. I may be knackered from the lack of sleep, but at least when I wake up I am not filled with this absolute dread of facing another day. It may sound clichéd, but I feel a little lighter. I don’t feel like I am being crushed by this overwhelming sadness any more. Things are by no means fixed, but they are definitely better than they were.

The intrusive thoughts are less and have changed too. I sadly can’t report that the suicidal thoughts are completely gone, but they are different and less often. Before, I had reached a point where I was absolutely certain that death was the only sensible option. It was all that I could think about and it didn’t matter what I was doing or how busy I was, it would be in my mind and it was the ultimate goal. I wanted to die and I spent all day thinking about how I was going to do it as quickly and painlessly as possible.

I am not certain any more though. I still find life and the future pretty hard to comprehend, but I don’t see suicide as inevitable now. I am still struggling to resist the urge to just give up on everything, but I haven’t already given up. The thoughts are mainly impulsive ones now, rather than the pervasive ones that were there before. Generally, the thoughts are kept at bay when I am busy and they only really hit me when I am anxious or upset, or at night when I am struggling to sleep and have time to think. I am keeping myself busy to push the thoughts back, but I can’t do that forever.

When I do stop to think, I am scared. I am scared that it won’t take much to push me back down the slope. What if I have to stop taking the Reboxetine because of the side effects? Will I get worse again? What if I don’t keep getting better? Will I give up again in frustration? What if I just give in to the impulsive thoughts that linger? What if, what if, what if?

I am scared by the thought of recovery. I am frightened by the future. I have spent so long assuming there is no future, it is impossible to know what to do with one. I don’t know how to live my life if I actually get it back. Dr M and New Social Worker ask me what I want to happen in a month, 6 months, a year’s time and I have no idea. I have no real aspirations because I have given up on them all.

I wrote about wanting to go back to work, but I am not sure I can actually do it. It is too hard to comprehend. I have been off for so long I don’t know if I can remember what it is like to work. Illness, ECT and medication have all messed with my brain and I don’t even know if it functions enough for me to work anymore. I feel so stupid and slow these days.

I am worried that I am not strong enough to recover. I am scared of therapy. I worry that it will make me so much worse in the short term that I won’t be able to cope. I don’t even know what it is meant to achieve. If my mood is improving with the medication, maybe it is more down to chemicals than Dr M is willing to admit? I know there are other problems, but I don’t know how therapy is going to help. I don’t even know if or when it will ever happen. I’ve been waiting so long it is pretty hard to imagine ever coming to the top of the list!

I feel like a coward. It seems so much easier to just give into the suicidal thoughts even now. I know things are improving, but I am too scared of what lies ahead. I have got so used to the idea of suicide that it is almost comforting. It is strange. Suicide is a coping method, as much as a get out clause.

I know I just have to face it. I know I need to stop worrying and thinking about it, but I can’t help it. I guess everyone facing the idea of recovery has these thoughts. I have been trying to ignore them, but they have been niggling away at me.

I have to fight these thoughts. They fuel the negative and intrusive thoughts that linger. I am trying.

Written by intothesystem

Thursday, 1st April 2010 at 9:25 pm

The ECT Experience…

with 3 comments

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.

A Bumpy Road…

with 4 comments

An awful cliche, but it sums things up. Not only am I still all bumpy with this damn rash, but I am still struggling.

I don’t really know how I feel because I’m up and down and numb all at once. Right now, my head is fuzzy and I keep feeling very dizzy. It means I can’t really think.

I am now getting moments where I feel okay. Better than okay even. I am thinking about what I could be doing and wondering if I can get on with life. The problem is, ten minutes or two hours later, I am feeling as bad as ever again. I am suicidal and see no future at all. I am trying to control the impulses, but I find myself not wanting to. This constant swinging is frustrating as each mood undermines the other and I find myself wondering what is the point if I am going to keep having these swings. It’s just a reminder of the grim reality of this condition. This has been a problem all weekend, but I found myself just pretending everything was okay, even during the bits that it wasn’t. Damn that automatic mask!

Ward round today and it seems my NHS support is not organised or forthcoming. This scares me as my health insurance funding is being stopped in 10 weeks as I’m now diagnosed with a long term condition. Damn my new diagnosis! Aside from that, ward round was productive and I feel a bit more prepared for tomorrow’s discharge.