Dread

Hi. Yes, it's me, the sporadic blogger. I just felt like posting a little update today, partly to get things off my chest I suppose.

Things have been, well, y'know, the same. Or worse. I'm not sure. Better actually, because I have been avoiding life like never before. Less anxiety because I haven't been shopping or done any cooking or cleaning or... anything. The cupboards are empty. Mr Man is starving. We've just been living off take-aways. But the counsellor said it's ok to avoid things that cause me anxiety, so that's ok. (?)

Well, it did help with my anxiety for a while, but now I realise we have things to pay and I have wasted all our money, so long term it's kind of made things worse. Now I have to go back to managing the anxiety of shopping and cooking with the added anxiety of worrying about money.

Some readers suggested ordering shopping online and having it delivered, which was a very good suggestion and I did try, but I had to register and fill in an online form which kind of brought on a panic attack and I haven't tried again since.

I feel like a failure. All I can do is apologise to Mr Man over and over again, but it doesn't seem to mean anything. "I'm sorry" doesn't cover it. It doesn't do my feelings justice.


I have an appointment with the counsellor again on Friday and I'm absolutely dreading it. I don't want to go because I'm still so upset by the things she said last time. I don't trust her anymore. She made assumptions about me without even giving me the chance to speak. I expect she thinks I'm trying to blame all my problems on the way Mr Man was treated in hospital in 2002, which I'm not, but she wouldn't know that because she didn't let me explain. It certainly was a major contributor to the anxiety that I was already suffering, but as you readers and other carers will understand, struggling to keep Mr Man safe was traumatic enough. They can't comprehend that. Despite all their training and qualifications, none of them truly know what it's like to try to keep the person you love safe, when they are genuinely suicidal for so many months, or even years. None of them know how hard it is to watch the person you love give up on life and lay in bed in their own urine, refusing to get up, refusing to eat and refusing to drink. None of them know what it's like when the person you love is persecuted every day by frightening hallucinations and there is nothing you can do to protect them from their own mind. And none of them know how it feels to place the person you love into the care of others, only to realise that you have placed them in even more danger. None of them understand these things.

I know, I should have recovered from all of this right? Mr Man isn't that poorly any more is he? So why haven't I been able to move on? I don't know the answer to that. And I don't know why it has rendered me useless in every area of life.


Other updates

Mr Man has been sporadic too. His mind becomes over active and he doesn't sleep for days, and then he burns himself out and sleeps forever. He swings from being a great entrepreneur to being an online gamer who doesn't feel well enough to handle life's responsibilities. He's been very understanding but unable to help me in practical ways. He still starves if I don't cook, and I still have to remind him several times a day to take his medication before he actually takes it.

Realisations

Some of this post has been deleted

I've been looking for reasons for why my anxiety has got worse recently. I think one reason is simply that my depression hasn't been under control since September 2007, and anxiety has always gone hand in hand with depression for me. Another reason directly relates to Mr Man. Although he has suffered occasional blips, Mr Man has been doing really well since his medication change last summer, and yes, that has been a cause of anxiety for me. He's doing so well that he is eager to start working again and wants to run his own business from home, but I am aware that his condition can change at any time - as it did a couple of weeks ago - and when it does I have to be ready to support him. Supporting him emotionally is one thing, but supporting him in running his business is something else. As much as I would like to help Mr Man run his business, I just can't cope with that sort of responsibility. Hell, I can't even cope with opening the post every day, and half of that is junk mail.

Another reason why his recovery scares me is that ultimately he would like to be able to cease claiming benefits altogether. I worry that the pressure of having to work once his benefits stop will make him poorly again. Maybe if he had been consistently well since last summer I wouldn't worry so much, but although generally he is much better, I have seen a lot of fluctuations during that time. He goes from being very focused with lots of business ideas, to burning himself out and feeling under pressure. I'm just not sure if he is ready for this sort of commitment, and yet I have to let him try because it's what he really wants to do. He has an appointment coming up to see someone at Working Links, so it will be interesting to see what sort of support they can offer him, if any. Of course, any changes in income will mean changes in housing benefit etc. and I'll be the one who has to keep filling in the forms and taking bank statements to the council.

I want to see him work because I want to see him happy. I know that he feels ashamed that he's not able to work. But it's just such a huge step. Maybe all of this has been worrying me more than I realised.

Not Fine

Some of this post has been deleted

Yesterday Mr Man was "not fine". He was very ill in fact. He was banging his head on his pillow in an effort to get the voices to stop. He didn't even hear me talking to him and seemed unaware of my presence until I put my arm around him. He told me he had to get on with his "work" again, and he had to mark himself with his number - 4064. I was worried that he was going to carve it into his arm with a knife or something. Later he got out "the folder". The folder has paper in it, and that is where he writes his "codes" and things like that - "work" that the voices have given him to do. He hasn't got the folder out since 2004. I couldn't believe his symptoms had deteriorated so much in such a short space of time, but I knew what the trigger was - we were supposed to be going out that evening to commemorate the death of Christ, and he was very anxious about it. Needless to say, we didn't go.

Mr Man is still unwell today, but much better than yesterday, and typically he doesn't remember much of yesterday. I say "typically" because it is quite common for Mr Man to be unable to remember periods when he has been acutely ill. He's been a little unwell for a while now though. Just a couple of weeks ago he spoke to his Occupational Therapist about how he was feeling. She was concerned enough to start visiting him every couple of days, and she even gave him her mobile phone number in case of a crisis, but he didn't want to talk to me about how he was feeling. I didn't mind; I understood that he doesn't like me to worry about him, and to be honest I was just glad that he was talking to someone instead of keeping it all to himself.

"Outside My Window" by Philippa King

Some Updates

After looking back through my posts I realise I haven't provided an update since July! Where does all the time go?

Back in July I had written that after nearly five years of taking Clozaril, Mr Man had stopped taking this medication suddenly and without warning, because he had had enough of the side effects. Once I realised what had happened he needed to have his Abilify increased and was also prescribed Quetiapine.

He remained on Quetiapine for about six weeks, until he finally decided he'd had enough of those side effects too. At least he made his intentions known this time, and actually, I thought it was good to see that he had a new found confidence and was taking control of how he wanted to be treated. His refusal to take these medications was in no way fuelled by any delusions, which is what distinguished these events from previous ones. He was able to reason logically and although recognising that he needed medication, he didn't want to take these particular ones.

He continued to do really well on Abilify alone, and the change in him was amazing. For all those years he had taken Clozaril, and we believed this was the best medication for him, and yet we didn't realise just how ill it was making him. Once he stopped taking the Clozaril the voices worsened slightly, but he felt - and still does - that the benefits far outweighed the slight worsening of symptoms. I will write more about this in depth next time, as I feel that people greatly underestimate just what mental health patients have to go through as regards these side effects, and then criticise them for ceasing medication.

Due to the worsening of the voices it was decided that now would be a good time to begin CBT, specifically to help Mr Man to cope with them. I think this was a good time for Mr Man, because although the voices had worsened, his insight was still good and he was thinking much clearer. I'm not sure if this would have benefited him when he was delusional as the focus is very much on questioning the voices and answering back.

He was still uncomfortable with the idea of having to see a psychologist, which of course would have been another new person involved in his care, so his Occupational Therapist, Sandra, has taken on the task. I must say, although we were unsure of her at the start, she has been very supportive of Mr Man over the past six months. Mr Man has felt able to open up to her and feels that she really understands - so rare, yet so important. She has also looked into things for him that he is interested in doing which he would never have been able to cope with before, such as taking exams for example.

So, that is the update so far. Although we have to continue to maintain a balance of what Mr Man can cope with, he is doing much better than previously, especially as he is more mentally alert and able to occupy himself. He even coped with going to a gathering of my family over the holidays, which he was actually looking forward to! I can't even remember how many years it has been since that has happened! Eight maybe? He was a little worried that the kids would be shy of him but they played with him as easily as if they had seen him every week.

So things are definitely looking up. And I have even begun watering my plants again, which apparently is a sign that my depression is lifting!

I will post more soon on side effects and other reasons why people stop taking their medications, and the huge changes in Mr Man since he stopped taking Clozaril.

Still

It's been five years this month since the last time Mr Man was in hospital. Over those years Mr Man has gradually improved and there are things he can cope with now that he couldn't cope with back then - simple things, like answering the door when someone knocks. He still has his off days, but he seems to have improved even more since he stopped taking his Clozaril and had his Abilify increased back in July, simply because he is more able to occupy his mind now that he doesn't feel so drugged.

He's not been feeling very good for the past couple of days though. He tries to carry on as normal if he has plans to go somewhere, but the rest of the time he tends to sleep more to try to escape the voices.

Tonight I heard him moving around in the bathroom more than usual. Despite the fact that it has been five years since he last cut himself, I found myself rushing up the stairs to make sure he was alright. I still worry that this will happen, even after all this time. Will I ever be able to let go of the trauma of the past?

Updates

Thank you to everyone who has asked how Mr Man is doing. I’m sorry to have kept everyone waiting so long for an update; since the weekend I seem to have swung from being mentally very alert and hardly sleeping, to feeling like a zombie and sleeping at every available opportunity. I expect this is a normal reaction to stress, and my sleep patterns seem to be governed by the perceived level of need from Mr Man – now that he is sleeping more soundly, I am too.

Dr Hillary was able to go back into work on Monday afternoon, and she obviously felt that seeing Mr Man was more of an emergency than whoever had spoken to the receptionist that morning, as she called to say that she would come for a home visit after 5pm that day.

It was important for her to establish why Mr Man had stopped taking his medication, as this would have a bearing on which direction her care would take. She was happy to find that it wasn’t due to any loss of insight, or command hallucinations, but because Mr Man had simply had enough of the side effects (I will write more about this soon). She was also concerned that Mr Man could be suffering from rebound psychosis after stopping his Clozaril so abruptly, but again, was happy to note that this didn’t seem to be the case.

Actually, I have been very surprised that Mr Man’s symptoms have not deteriorated as much as they have in the past. I suspect that the Abilify he takes has helped him far more than anyone realised. About four years ago Mr Man skipped some Clozaril, hoping to control some of his side effects, and at that time he became very ill, very quickly. He was careful not to skip more than one dose at a time so that he wouldn’t have to be reintroduced to the drug (which is when the side effects are at their worst), but within days he was sitting right up close to the TV, with a note pad and pen in hand, insisting he had to write down “codes” from the commercials for “the company”.

At that time he was also taking Risperidone, but the worsening of his symptoms without the Clozaril was dramatic. This could lead some to conclude that maybe the Risperidone wasn’t really up to the task, but it’s interesting to note that when the Risperidone was reduced before the introduction of Abilify, there was a marked deterioration in his symptoms then as well, even though he was still taking Clozaril. This is why I say that the Abilify has obviously helped Mr Man more than anyone realised, as it really seems to have kept him afloat this time. I can’t help wondering if some of Mr Mans current psychosis is in fact rebound from stopping the Clozaril abruptly, and I wonder if he would have managed on Abilify alone if the Clozaril was reduced gradually and the Abilify increased slightly. Perhaps we’ll never know.

Of course, from Mr Man's point of view he's not doing very well at all - the voices have worsened, his anxiety is worse, and he is struggling to "hold it together" as he put it. I've no doubt of the internal struggle he is having to remind himself of what is real and what is not, and I know that when the voices worsen it becomes very distressing for him, but he hasn't lost his insight and become completely delusional so from my point of view he is doing very well. He even spent some time in his studio this evening. I still keep running up the stairs every time I think I can hear him in the bathroom though, so deep down I know the potential for further deterioration in his symptoms is there.

Dr Hillary praised my good sense (her words) to increase Mr Mans Abilify over the weekend and has decided to keep the dose at the increased level of 15mg instead of 10mg. She didn’t want Mr Man to continue relying on Diazepam for sleep though, because of its addictive nature, so after also noting Mr Mans heightened anxiety (he was shaking from head to toe), she prescribed him Quetiapine, also known as Seroquel. Quetiapine has a sedative effect and is sometimes used for the treatment of sleep and anxiety disorders, although it is primarily an anti-psychotic medication. So hopefully it will cure everything! So far it seems to have had the desired effect – we’re both sleeping better and I’m not even the one taking it!


On a Lighter Note

After researching Quetiapine on the internet I discovered that it is highly sought after by inmates in US prisons, referred to as “Suzie Q”. I told Mr Man that if he decides to cut out his medication again to give these ones to me instead of throwing them away – I might be able to sell 'em!

And Hannah, from Coloured Mind and Scattered Thoughts, raised an interesting point in the comments section about crisis teams and early intervention. Dr Hillary mentioned this during her visit. She said if we wanted to be referred to the crisis team we should let her know before Thursday. It seems one actually has to be referred to a crisis intervention team before they can intervene, which really isn’t any use if you’re suddenly having a crisis out of the blue, is it?

The Question of Emergency

I called our local Community Mental Health Team this morning to book an emergency appointment with Dr Hillary. Unfortunately she wasn’t at work today as she was having an emergency of her own, and Mr Man was refusing to see anyone else. Additionally, Mr Man has decided that he doesn’t want to start taking Clozaril again (which I will write about later). His Care Co-ordinator is on holiday, so the receptionist put us on hold while she spoke to a nurse.

She came back and explained that there “isn’t a real emergency” so Mr Man could come in and see Dr Hillary on Wednesday.

I accept that there are unavoidable circumstances which mean that Dr Hillary can’t be magically brought into work in a puff of smoke, but it’s that phrase “isn’t a real emergency” that bothers me – as if I’m being accused of overreacting again. I suppose she’s right; Mr Man hasn’t chopped his own head off and he hasn’t been running up and down the street naked screaming blue murder (subject to change). But really, those are the kind of emergencies where I would be looking for an immediate assessment to have him admitted into hospital, and it wouldn’t matter which doctor he saw. This situation is an emergency to us because we want to avoid a hospital admission.

Admittedly, Mr Man’s symptoms haven’t deteriorated as quickly as they have in the past when he has skipped some medication, although I suspect he is keeping much of it to himself and he is sleeping most of it away with the aid of Diazepam. If they had, I would be much more worried about him than I am. Still, I won’t be leaving him at home alone any time soon, to avoid any real emergencies.

Best Laid Plans

Mr Man saw his psychiatrist, Dr Hillary, recently. We discussed the worsening of the voices, and also an interesting symptom which he has not admitted to previously – his auditory hallucinations actually include hearing music. Obviously this is not a symptom that is bothersome to him, and the music that he composes is a recreation of what he hears. This takes us back to the subject of psychosis and creativity, and raises the important question of how or how much of these symptoms need to be controlled.

For the most part Mr Man has been coping very well with the level of symptoms he currently experiences. It’s probably not what most people would call a “normal” life, as there are still many areas that cause him problems, but compared to just a couple of years ago his quality of life has improved dramatically. He regularly plays table tennis and has been able to interact with other players and form new friendships, albeit not close ones. He also composes music, writes computer programs, and designs websites.

Obviously increasing medication would greatly impact on his ability to carry out these activities due to the side effects of drowsiness and lack of concentration. As Mr Man said himself “I don’t want the music to stop”, and yet some of his symptoms are still distressing to him. For this reason it was decided that now would be a good time to refer Mr Man to a psychologist who specialises in psychosis, so that he can help Mr Man to learn how to “talk back” to the voices. I feel this is an important step, and now would be the ideal time; Mr Man has good insight into his illness, and has been progressing steadily.

However, I fear these plans are about to be put on hold for a while – Saturday evening I discovered that Mr Man has not been taking his medication.

I had noticed over the last few days that Mr Man’s anxiety had been increasing. By Saturday afternoon he didn’t really know what to do with himself. He was fidgety and felt clammy. He’d sit on the door step and then come in again 10 seconds later. He was feeling hot then cold. He also had this very strange look in his eyes that I had not seen before. His eyes were wide with a “crazed” look – I’m sure to others it would have seemed quite scary. I put it down to the anxiety. Thankfully we still had some Diazepam left from when he was prescribed it previously. It settled him for a while, but later that evening he became very negative about life and everything in it.

As I gave him a reassuring cuddle I asked him: “How come you’ve been feeling so poorly just lately? Have you missed some of your tablets?” He avoided eye contact but nodded to confirm that he had.

At a time like this, establishing and maintaining open and honest communication is essential. A person suffering from psychosis will already be feeling confused and anxious because of the voices, so no matter how scary or shocking, I always try to be supportive and never react emotionally to anything that Mr Man tells me, as this would only raise his anxiety further and possibly make him feel that he can’t confide in me. I say this, not to make myself sound amazing, but because it is an important factor when dealing with someone who is suffering from psychosis, and yet one that is easily neglected.

“Ok, which ones have you missed” I asked him calmly, still cuddling him. Mr Man started to panic:
“I’m not going back into hospital”
“No, that’s ok; I don’t want you to go into hospital either, but I need to know which tablets you have missed”

He told me it was his Clozaril, also known as Clozapine. I needed to know how many doses he had missed. He kept repeating that he wasn’t going into hospital, and now I realise why he was panicking so much – he had missed too many doses to be able to just go back on to his usual dose. *Please see footnote.

"Missing Clozapine" by Philippa King

We talked for a while and I reassured him that I wouldn’t let anyone take him back into hospital. We made a deal. I promised to keep him out of hospital, but in return he has to be completely honest with me about how he is feeling – I can’t keep him safe unless I know how he is feeling, and if I can’t keep him safe then I can’t keep him out of hospital. We have to work together. He promised, and we shook on it. I know I will have to remind him a few times because his memory will worsen as the voices become more intrusive, but so far I feel confident that we can overcome this together.

In saying that, I had a sleepless night on Saturday night wondering if I really will be able to keep my promise. I couldn’t have done this before, but his symptoms are not new to me anymore. In fact, I think I would cope less if he ended up in hospital again. I’m actually more worried about the side effects of starting his Clozaril again than the worsening of his symptoms. I really don’t think that hospital would help him at the moment, as none of his usual distractions would be available to him. He can’t concentrate on much at the moment, but we are watching an enormous amount of Star Trek and Babylon 5 to help keep his mind occupied!

I called the out of hours doctors surgery on Saturday evening, and they put me in touch with the on-call Psychiatrist. I was keen to start Mr Man back on the Clozaril as soon as possible, but there was no way of being able to get hold of any low dose tablets. He told me I would have to wait until Monday morning and contact Mr Mans usual Psychiatrist. That means another two nights without medication. In the mean time he said I could increase the Abilify that Mr Man takes in the morning, and give him Diazepam for his increased anxiety.

So now we wait until Monday morning. But what makes a person stop taking their medication in the first place? This will be the topic of a post in the near future.



*The problem with Clozaril is that there are some very serious side effects, and so guidelines are very strict. It cannot be prescribed by a GP and high street pharmacies do not stock it. Previously it was licensed solely for the treatment of “treatment resistant Schizophrenia”, although I have read recently that it can also be used for psychosis associated with Parkinson’s Disease.

Patients on Clozaril have to be monitored very closely as it can lower a person’s white blood cell count dramatically, leaving them defenceless against life threatening infections. Due to this and other serious side effects a person is usually admitted into hospital when starting treatment, not to mention the fact that they will probably already be very ill with the symptoms of psychosis. When a person first starts treatment of Clozaril their WBC is tested once a week for six months, and the person is only given one weeks supply of medication at a time. After six months the patients WBC will be tested every two weeks for a further six months, and then every month for the duration that they take the drug.

A starting dose of 12.5mg is gradually increased to a therapeutic dose of between 350 and 600mg. At one time Mr Man was taking 800mg a day, but after a certain level the therapeutic benefits fail to increase whilst the side effects continue to worsen. The correct therapeutic dose will be different for everyone, and can be affected by other medications that are taken. A blood test can be taken to establish the correct dose for each patient. Currently Mr Man has been taking 300mg daily.

The starting dose is exceptionally low as there are other complications associated with taking Clozaril. Suddenly starting on a larger dose can result in coma or cardiac arrest. For this and other reasons, once a person has missed two consecutive doses of Clozaril they have to be reintroduced to the drug with the starting dose of 12.5mg.

Over protective

End September 2002 - beginning October 2002


As previously mentioned, the voices have worsened again for Mr Man recently, telling him to cut himself. So far he has managed to resist carrying out their demands, but it’s funny how the fear that he will follow through never completely leaves me.

Most of the knives in our house aren’t very sharp but I do own a craft knife from years ago when I went through a phase of card making, and I keep this well hidden. I needed to use the knife recently and I had to wrack my brain to try to remember where I had hidden it. Mr Man walked in on me as I retrieved it, and it made me jump like a naughty school girl trying to hide a secret. It was still stained with Mr Man’s dried blood from 2002. It was the only time he had ever cut himself at home, and yet I still fear it could happen again.

Mr Man had been in hospital for about 4 months. He was still an inpatient at the Psychiatric hospital but he was at home with me for the evening on home leave. I’ve discussed previously why it was difficult for me to have Mr Man at home on home leave, but equally as difficult to refuse.* Things were really starting to come to a head; I could see that Mr Man’s condition was deteriorating, but the only member of staff who recognised this fact was his primary nurse, who unfortunately didn’t seem to be at work that often, or was working nights. The other staff, including the consultant, was under the illusion that Mr Man wasn’t suffering from psychosis at all and never had, and that he wasn’t a risk to himself either, despite recently having been through several assessments which indicated otherwise.*

Mr Man had cut his arm whilst on the ward two weeks earlier, with razor blades. The poor lad that found him had only just been moved from the Psychiatric Intensive Care Unit to the Acute ward, and had to be taken back to PICU because of the shock. Mr Man was assessed and found to be suffering high levels of psychosis, and was a high suicide risk.* He was placed on level 3 observations, which meant he was checked every 15 minutes – as if it takes longer than 15 minutes to seriously harm yourself. These observations never lasted long anyway; maybe a day or two, and the following week Mr Man’s consultant suggested that Mr Man go home over night for some leave. This caused a huge row between the consultant and Mr Man’s primary nurse, who was the one that carried out the assessments and seemed to be the only person who took Mr Man’s symptoms seriously; not to mention my own ability to cope. She overrode the consultant’s decision, and told Mr Man that for the time being he was only to have a couple of hours home leave at a time, and no overnight stays.*

During those hours I followed him everywhere. I tried not to make it obvious, but whenever he needed the toilet I would find something that I needed to do upstairs. I told the staff I was doing this, in an attempt to get them to understand how worried I was about Mr Man's safety. They told me I was being over protective and that I needed to allow Mr Man to take responsibility for himself. They said I was "hindering his recovery". So on Tuesday 1st October when Mr Man was at home for a couple of hours, I followed their advice and allowed him to go to the toilet alone. I knew it was wrong. It felt wrong. There was something in his face that told me it was wrong. I patiently waited down stairs. When I heard the floorboards creaking I knew he wasn’t sitting on the toilet, so I went upstairs. And that’s when I found him.

He had cut the inside of his forearm lengthways with the craft knife, and was prodding around inside with his fingers. “What are you doing?” I shrieked, as I took the knife out of his hand. He was clearly very distressed. “Please don’t be upset with me, I had to do it. They told me I had to get the aerial out”. It was difficult for me to be a calming influence when inwardly I was panicking. I know now from reading medical blogs that I probably didn’t need to panic quite so much as there was no arterial spurt, but at the time the cuts looked deep, and finding him in such a state was traumatic.

"Cut Out" by Philippa King

I didn’t know what else to do except take him back to the ward. He really didn’t want to go, but I managed to persuade him by explaining that I didn’t know how to dress his wounds and that the nurses would know what to do. I wrapped his arm in a clean tea towel and we made our way back to the ward. The cuts were worse than last time, but he wasn’t monitored under any level of observation this time.

The next two weeks were probably the worst two weeks for both of us, as Mr Man’s symptoms continued to deteriorate, and the staff continued to ignore it, but I will write about that another time.

So when Mr Man says that the voices are telling him to cut himself, I know that the danger is real, although I also know that Mr Man is learning to cope better and resist their demands. I don’t follow him around like I used to, but I still make sure that temptation is hidden out of his way. I don’t hide every knife in the house, and if he really wanted to he could find a way to cut himself, such as with razor blades as he has before. But when just a momentary lapse in his resolve could result in such traumatic circumstances I don’t see the point in unnecessarily leaving very sharp knives in view. I don’t think that is being over protective, do you?


*These points have been discussed previously in the post "Patient rights verses patient safety"

Updates

Some of this post has been deleted

Some time during the winter months Mr Man’s CPN, Mark, had a job change, so now Mr Man has a new Care Co-ordinator; an Occupational Therapist who we will call Sandy.

Being an Occupation Therapist, she wanted to do something practical to help Mr Man with his anxiety. Since he has already been on every anxiety management course imaginable with little or no success, it was decided that she would go for a walk with Mr Man every two weeks to gradually build up his exposure, and to talk him through how he was feeling during the walk. This seemed like a reasonable plan, and she turned up the following week without an appointment as planned; prior notice would have given Mr Man time to worry about it. That was 3 months ago. This could have been a great opportunity for her to establish a relationship with Mr Man, if she had followed through, but since then she has only come to see Mr Man once, with a trainee in tow.

I think the plan was supposed to be that I was to carry on what she had started, as after the first walk she said “Maybe Mrs Man could go out for a walk with you next week?” and since then there has been no mention of her taking another walk with him. This irritates me because on one hand they are very fond of telling me to step back and that Mr Man has to learn not to be so dependant on me alone, and yet on the other hand they expect me to be the one to support him in all of their wonderful plans for him; not to mention the fact that I don’t always have the physical or emotional energy to undertake these endeavours due to my own health problems.

How do I stop the darkness from rolling in, for Mr Man or myself?

"The Darkness Rolling In" by Philippa King

Mr Man would like to start running regularly, to try to lose some of his medication weight, but this is going to be difficult to put into practice. Obviously he doesn’t feel able to run alone, and I really don’t have the health to support him in that way. It would be nice if someone from the Community Mental Health Team could take half an hour out of their day to run with him, but these people don’t want to give you the practical help that you actually need; they prefer to hold “Well Being” classes to just tell you what you should and shouldn’t be doing – if you can overcome your anxiety to get there in the first place of course. I wonder if this is partly due to wanting to maintain a certain amount of professionalism and emotional detachment, or whether they just don’t care enough to do anything even remotely outside their job description.

More recently Mr Man has been experiencing some fluctuations in his symptoms. We expect this from time to time, but when the symptoms are particularly bad there is usually a trigger, such as a stressful situation. No such situation springs to mind, but the voices have been telling Mr Man to cut himself again. More about that in my next post.

“Care” in the Community

I’m aware that Mental Health workers sometimes read this blog, and some have previously commented that it helps them to see things from a different perspective. So this is a message to all those who provide “Care in the Community”.

Don’t get shirty when a “service user” who can’t even remember to change his underpants doesn’t return your calls. And if he has a spouse who usually takes care of these things for him, take a minute to think about why she might be letting those things slip at the moment.

Sometimes there are more important issues in life than your appointment schedule running at 100% efficiency.


Edit: After making such a fuss last week, she failed to turn up for a scheduled appointment with Mr Man today, and she didn't even call to cancel. Maybe life has taught her a lesson in "more important issues"?

Respite

Dictionary definitions of the word Respite:

• to relieve temporarily, esp. from anything distressing or trying; give an interval of relief from
• a usually short interval of rest or relief
• a (temporary) relief from harm or discomfort

Respite comes from Old French respit, from Latin respectus, “a refuge, a retreat”


Mr Man went into his respite home again recently. It’s one of those necessary evils that both of us hate. If I’m going away somewhere Mr Man can’t cope with either coming with me or staying at home, and so he needs to go into “respite” accommodation. I know I’ve complained earlier in the year that there are not enough respite beds, but that doesn’t mean that we like using them!

The day that Mr Man goes in is always a stressful one, and we tend to leave everything to the last minute; pointlessly trying to delay the inevitable. I feel so cruel dropping Mr Man off there when I know that he hates it there so much. He feels insecure being away from the familiar surroundings of our own home, but we both know he won’t cope being on his own. At least when he goes into the respite home he always stays in the same room, which helps to give him that sense of familiarity that he needs. Also, I worry about how he will cope while I’m away. I don’t trust the staff to notice if his symptoms worsen.

"Respite" by Philippa King

We both tend to avoid contact with the people who work there as much as possible. They’re pleasant but clueless, and so laid back that they’re almost levitating in a horizontal position. It’s frustrating to say the least. The presence of one member of staff in particular makes Mr Man feel extremely uncomfortable as he used to be his manager when he worked for Royal Mail, and they didn’t get along at all. Neither of them has brought up their past relationship, and they’re pleasant to each other, but it’s very awkward.

Mr Man tends to just stay in his own room most of the time. He takes his laptop with him and connects to the internet using his mobile phone as a modem, and he also has a little gadget that he takes with him that he can watch all his favourite films on.

He did spend some time in the living room this time though, comforting a woman who was also a “guest” there. Now bear in mind that there is only one respite bed and Mr Man was in it, so this lady has either just been discharged from hospital and her stay there is part of her rehabilitation into society, or she is staying there as a form of “crisis intervention” – in other words her mental health is deteriorating and she is not coping at home, so they move her to this home in the hope that they can stabilize her before she deteriorates further and needs a hospital admission - after all, prevention is better than cure, and rehabilitation homes with unqualified staff are cheaper to run than psychiatric wards which require proper nurses. Bearing that in mind, I’m not quite sure how this “crisis intervention” thing is supposed to work; the staff have no say over medication or any other form of treatment or therapy. In all honesty they appear to be nothing more than baby sitters.

When Mr Man first stayed in this home I was quite impressed with the relaxed atmosphere and the fact that the staff room door was always open. Rather than making themselves unapproachable by hiding away in the office for their gossip and tea, the staff have an open door policy whereby guests can just walk in to the office at any time of the day or night for a chat. This is so different from the hospital that Mr Man was in where patients were treated like naughty school children, left queuing outside the office door, and were not allowed out of their rooms after a certain time.

However, going back to the lady that Mr Man was comforting, what she needed was more pro-active care rather than re-active*. As she struggled to hold back tears she explained to Mr Man that she felt too shy to just walk into the office and announce “I need to talk to someone”. Once again I suppose it comes down to the age old problem of these staff members not being psychic; they can’t offer help unless they know it’s needed. But surely discernment would be a good quality to possess for a job like this?

To be honest I’m not sure what qualities or qualifications are looked for when these people are employed. I mentioned previously how Mr Mans Key worker, Jim, unhelpfully tried to offer me various dates for Mr Man to stay as a substitute for the actual dates I needed – not very helpful when you have a hospital appointment for an operation on a specific day. He has also rather tactlessly suggested to Mr Man that he should stay more often to give me a break at home, as if Mr Man is a burden to me. If it didn’t make me so angry it would be laughable considering the cutbacks in respite accommodation. How could he possibly stay more often?

This time when I booked the dates for respite Jim booked Mr Man in for the Sunday night “just in case”, in addition to the Friday and Saturday I had asked for, despite the fact that I had already told him that Mr Man would be picked up by his sister on the Sunday morning. I couldn’t be bothered to argue with him. The less time spent in conversation with him the better. When I dropped Mr Man off I made sure that the staff were aware that Mr Man would not need the bed on Sunday night, but they left him booked in saying “It doesn’t matter”. Well, obviously not to them, but as someone who struggles to get the dates needed for Mr Man, especially now that there is only one respite bed for the whole of the north of the county, I feel it is a shocking waste of resources to book a bed for use when you know full well that it will remain empty. What happened in the summer is a classic example; I didn’t know until less than one week before I was due to go away whether the bed would be free on the Thursday night or not. Is this the kind of attitude that staff have at all of these kinds of homes?

To be honest I’m beginning to wonder whether it’s really worth all the stress just for a few days away. This last time that Mr Man stayed there I was incredibly worried about him as he began to feel very down on the Saturday. I couldn’t sleep that night because I was so worried about him and ended up phoning him at about 2am to make sure he was ok. Even after all this time I can’t shake the thought that he might seriously harm himself or even attempt suicide. I suppose after living with that very real fear for so long it will never leave me entirely. My only comfort is that when he is in the respite home he is not completely alone, so if I suspected that something was seriously wrong I could get the staff to check on him.

On Sunday evening I was so relieved to have him home again with me. Our true respite.



*In behavioral medicine, proactive often refers to a treatment approach where a therapist initiates contacts as opposed to reactive where the responsibility for contacts with the therapist is entirely on the client. - Wikipedia

Progression or Regression? Part Two

The situation with Mr Mans health continues to be confusing for me.

His Table Tennis nights had dwindled down to once a week towards the end of the summer, but now that the season has started again he’s back to playing four times a week. Despite playing more often, the anxiety he experiences before he goes out seems to be getting worse instead of better, even on practice nights. But once he gets there and starts playing he seems completely fine, unless he is just doing an amazingly good job of hiding it, like he did at the wedding the other week.

When I went to pick him up last night he was chatting away to other players, and you could almost forget there was anything wrong with him at all. But once we returned home he kept telling me how unwell he was feeling and he even reverted to banging his head repeatedly on the wall – something he hasn’t done since the last time he was admitted into hospital in 2003.

When I think about it, he hasn’t composed any music for a few days now, and he’s nearly set fire to the kitchen twice recently, so I suspect he is struggling with concentration at the moment. Until recently he was coping quite well with cooking – something he has been doing more of since the worsening of my own health this time last year.

I get it so wrong sometimes when I’m looking after Mr Man, even after all this time, probably because the level of what he can cope with keeps changing. It’s so confusing. Also, it’s hard not to react to a situation sometimes. After hearing him banging his head repeatedly, I went into the kitchen to give him a cuddle and some reassurance. However, when I walked into the room he was just sitting there in the chair whilst the chip pan oil was burning and filling the room with smoke. “What on earth are you doing?” I shrieked. “I’m just waiting for the oil to cool down” he replied. “But the gas is on underneath! It’s burning! Look at the smoke! Can’t you see it’s burning?”

I should have thought more rationally about the situation before I freaked out the way I did. My reaction only made him feel worse. It’s never a good idea to freak out at someone suffering from psychosis; it only adds to their anxiety and confusion. He has enough going on in his mind as it is. If I had thought about it calmly I would have quickly concluded that he obviously wasn’t feeling well and shouldn’t even have been attempting to cook food. He’s never done anything like this before; he usually knows which gas setting to use so he obviously wasn’t thinking clearly. I should have just switched the gas off and given him his cuddle. Why did I even think he would be well enough to cook food after he had told me he didn’t feel well?

The confusion psychosis causes can be frightening and disorienting, like thick plumes of smoke.

"She Shouts" by Philippa King

So the question “Progression or Regression?” should really be aimed at me. Am I progressing or regressing in my role as carer (or even wife)?

Progression or Regression?

Sometimes I just can’t tell.

Mr Man keeps a lot of how he feels to himself. Often I have to rely on visible “signs” of symptom fluctuation, such as pacing the floor and looking out of the window a lot, and then I ask him specific questions. Occasionally he makes the statement: “I don’t feel very well” without prompting, but he doesn’t elaborate on what that means without very specific questions. Simply asking “In what way?” produces the response “All ways”. I have to actually ask: “Are the voices worse?” and he’ll nod to confirm that they are.

Mr Man appears to be coping very well at the moment. He’s been keeping himself incredibly busy in his studio, either by composing music, writing computer programs or designing websites. This is obviously a good thing and shows that his level of concentration has improved dramatically.

Also, he actually came to a wedding with me at the weekend, and I was amazed at how well he coped. In the past he would have been throwing up, shaking, sweating, and looking extremely pale, but although I know he was feeling anxious he controlled it very well and showed no visible signs of it. We were both relieved to find that it was a relatively small occasion, but we didn’t stay for the whole evening; the ceremony, the meal, and the speeches were more than enough for Mr Man. Once we stood up to leave Mr Man couldn’t get out of the building quick enough and I found myself chasing after him!

But besides the expected worsening of symptoms since the wedding, there have been other little things that make me wonder if Mr Man is doing as well as it appears.

Recently he’s taken to sitting on the front doorstep. Initially I thought this was a step forwards as he’s usually anxious about being outside where “the voices can see him”. But then I realised this was merely an extension of looking out of the window, which he does because he believes people are watching the house. I asked him one day if he was getting some air, but he told me he was “just keeping an eye on things”.

"The Threshold" by Philippa King

Also, although I’m glad that he has been keeping himself busy and distracted in his studio, this also means that he is neglecting himself more than usual. After sleeping a lot myself the other day, I woke in the evening to find that he hadn’t had anything to eat or drink all day.

I was amazed to find that he had actually washed his own hair last week, and again, this would appear to indicate progress. He said it was because he didn’t want to wake me, but I suspect it was because he was trying to escape the anxiety of being forced to have a bath. He didn’t escape it though; I made him have a bath before the wedding. But there’s something about bathing that makes him revert back to something resembling the man I cared for before his first hospital admission. He suddenly becomes withdrawn and depressed, and he just sits there with his head hanging low, unwilling or unable to wash himself; I can’t tell which. He says he hates getting wet, and having a bath makes him feel “exposed”, but unfortunately it’s one of those necessary things that I have to make him do sometimes.

Generally though, I would still say he’s doing much better than previously. Although his symptoms worsened after the stress of the wedding, it wasn’t as bad as when he went to a committee meeting for his table tennis club a couple of months ago.

Mr Man seems reluctant to admit that he is improving though. I wonder if it is because subconsciously he worries that if others think he is improving then too much will be expected of him, or that he won’t be given the support that he still needs. That must be a very real fear for people recovering from mental illness, especially as so many people only seem to be able to understand “ill” or “well” and nothing in between. “In between” can be very confusing though.

Under Pressure

My brother and his family live in Norway, and for the past four or more years he’s been asking me the same question: “When are you coming to visit us?”

As I’ve told him time and time again, I would love to visit him in Norway but Mr Man wouldn’t be well enough for the journey, and he couldn’t cope with being away from the home for more than a few nights, either in Norway or in a respite home.

Everyone keeps telling me how it would do Mr Man so much good if he would go - the fresh mountain air and picnics by the sea; it’s so tranquil – as if one trip to Norway will cure him forever. Now wouldn’t that be great? But back to planet Earth...

Until recently, getting to the part of Norway where my brother lives meant a long drive to Newcastle, followed by a ferry, followed by another long car drive, followed by 3 more ferry trips and car drives – about two days of travelling in all. Now that there is a more direct flight, we would “only” have to drive to Stansted airport which is maybe a couple of hours away, and fly for a couple of hours as well. That’s great. But Mr Man can’t stand being in the car for a couple of minutes, so how exactly am I supposed to get him there?

My brother recently sent me this beautiful picture of the scenery where he lives, and asked me the same question yet again, as if somehow seeing the view will miraculously make Mr Man well enough to go.


When will people understand that their “gentle encouragement” doesn’t help me to find a solution, it just depresses me? I’ve learnt to accept my situation the way it is, so why can’t other people just accept it as well? Why do they have to keep reminding me of what I can’t have instead of encouraging me to be grateful for what I’ve got?


I have the same problem with my family when it comes to babies. As I’ve explained before, when Mr Man and I married it was actually me who was the sick one. From the moment we married my family asked me nearly every week when we were going to start a family, especially my Mum. I would try to explain to her that I didn’t think we would be able to cope because of my health problems, but every week she would ask again and we would go through the same conversation every time. In the end I had to explain to her how painful it was for me to discuss it. I didn’t need persuading; I wanted a baby desperately, but I just wouldn’t be able to cope. She finally let it go.

Then of course Mr Man became ill too. We always said we would review the baby situation when we had been married for 5 years, but on our 5th anniversary Mr Man was an inpatient on a Psychiatric ward. He had been there for 5 long months and had attempted suicide 3 weeks earlier, and at that time I couldn’t imagine him being well ever again.

Strangely, I remember sitting with him at the hospital and out of the window I could see two metal brackets attached either side of a post for hanging flower baskets, and I thought how much it looked like a womb and ovaries. Empty ones. Barren. I would sit there every evening looking at the same sight. A constant reminder of my situation.

Of course, Mr Mans health has improved dramatically since then, and I have gone through various stages of remission and relapse. For a while we seriously considered having a baby, but for some reason we didn’t hear about this “well known fact” that Anti-Psychotic medication causes fertility problems until Mr Man had already been taking them for a few years. Despite being childless and of child bearing age, no one considered it important to tell us. We started going to a fertility clinic for investigations, but since I relapsed again we cancelled our other appointments.

It’s probably because we seriously considered parenthood for a while that I now have problems with my family going on about children again.
“You’re not getting any younger, it might be too late soon”
“Thank you Mum, I’m aware of that”
What exactly am I supposed to do about it? I don’t have a magic wand. I can’t make Mr Man well. I can’t make myself well. I can’t make us fertile.

So, as I said earlier:
When will people understand that their “gentle encouragement” doesn’t help me to find a solution, it just depresses me? I’ve learnt to accept my situation the way it is, so why can’t other people just accept it as well? Why do they have to keep reminding me of what I can’t have instead of encouraging me to be grateful for what I’ve got?

Not quite out of the woods

The last few days Mr Man hasn’t been feeling very well. The voices have become intrusive again and he’s been anxiously pacing the floor and standing by the window checking for people watching the house.

I know I have to expect that his symptoms will fluctuate, but it’s so disheartening when he’s been doing so well. I just hope that this isn’t a result of the extra responsibilities he has taken on recently, and I hope that he will still feel able to manage them.

Some Updates

The daughter of the man mentioned in my post entitled “Helpless” managed to get her Dad to the Community Mental Health Day Hospital last week, and he saw a psychiatrist there. His medication has been changed, and his daughter bought him a mobile phone so that she can ring him daily. Despite having a full time job and being a single parent with two children to look after, she has realised that she now has to take control of his care, and has decided to go with him to all of his appointments.

The strain of the previous weeks events, coupled with the realisation of her responsibilities as her Fathers carer, finally took its toll on her over the weekend, and she broke down in tears. I spoke to the new* Carer Support Worker at the CMHT today to get some support for her.

Funnily enough, the first question I was asked was “Who is her Dads Care Co-ordinator?” I don’t understand why people who actually work in mental health automatically presume that people always have access these services, when they know full well that these services are limited and many people are going without. Anyway, the lady said she would look into the matter and find out why he doesn’t have a CPN, and also contact the daughter to offer her support.


In other news…
Mr Man is doing exceptionally well at the moment. He keeps surprising me by taking on more and more responsibilities.

In my last update I wrote that as well as attending Table Tennis practice regularly, he was also taking part in the Summer League and helping out with coaching. Despite the Summer League and the coaching being held on the same night, and thus taking him out of the house for 4 ½ + hours on that night, he seems to be coping with that very well. He has also started going to practice twice a week now instead of just once a week, and this week he has decided to go to coaching nights twice a week as well! That will take him out of the house four times a week!

His offer of redesigning the club website has been accepted, which now means he is a member of the Clubs Committee, and last week he attended a Committee meeting. After the stress of having to speak up at the meeting about his plans for the website, he began to feel very unwell and the voices started becoming very intrusive. He excused himself and sat in the locker room for a while and had a drink, and then returned when he felt able to. Obviously he is still having problems from time to time but he is coping with his symptoms much better now.

And finally, Mr Man has also been asked to Captain his team next season. It seems that since it was announced at the Committee meeting that Mr Man will be able to save the club nearly £200 a year in hosting fees, he has become flavour of the month!



*This new position is something I had been meaning to write about for ages. I suppose now it is a topic for my new blog.

And On a More Positive Note…

My last post left me trying, unsuccessfully, to chase the Black Dog away for the rest of the day. Cinnamon Swirls didn’t fix it, and neither did driving up and down the dual carriageway at 70mph with Craig David damaging my eardrums. But when I picked Mr Man up from his table tennis practice tonight, all my sadness seemed to melt away as I listened to him enthusiastically detail his evening.

Mr Mans table tennis season came to an end last month with his team finishing in second place in division two and with him just narrowly missing third place for the average number of games won. Considering he had two relapses during this time (one caused by stress and the other due to a medication change) I think he did amazingly well. Next season he will go up into the first division.

Last summer he didn’t cope so well once the season had finished as he had nothing to focus his mind on, but I’m pleased to say that now his club have their own dedicated premises so they will be able to stay open for the whole summer. A summer league has been organised, which Mr Man is taking part in, and the premises can be hired throughout the summer for practice.

I am amazed at how well Mr Man is doing at the moment. When I think back to the beginning of the season, he didn’t want to mix with players outside game nights, and he often didn’t want to go to practice nights either. When he did go he only stayed for about 45 minutes. He started going more regularly when he started losing games on game nights! After a while he increased his time at practice nights to an hour and a half, mainly for my benefit, so that I would have time to see a friend for an hour in between dropping him off and picking him up. He started chatting more with other players, and at the summer league earlier this week he even exchanged numbers with one of them! His new friend text him today, and they arranged to go to practice earlier than usual, so he was there for two hours this evening. His friend can’t make it next Friday though, so they’ve decided to practice together on the Saturday!

I know this probably sounds like nothing unusual to other people, but to me it is a real breakthrough. Mr Man hasn’t interacted with others as well as this since about 2001.

He played really well tonight. Now that he is taking Citalopram he seems to be coping much better with his anxiety, and no longer needs to use Diazepam, so his reactions are much quicker. Tonight he outplayed a premier division player who won 85% of his games last season! Not surprisingly then, Mr Man has been asked to help out with coaching, which he has agreed to (and seems to be looking forward to), even though the summer league is on the same night of the week, so it will mean being out of the house for about 5 hours on that night! I asked him if he thought he would be ok, but he didn’t seem worried, he just said “Well if I don’t cope very well I’ll just tell the bloke who organises it that I’m not very well, he’ll understand”. This surprised me as Mr Man doesn’t usually like to admit that he is unwell, in case people ask what is wrong.

He has also decided that he is ready to play in two leagues next season, which will mean more nights out of the house, and he has volunteered to redesign the club website, and to update it weekly, so he has lots of things planned to keep himself busy and his mind occupied.

I am so proud of him. He has shown amazing strength and courage.

Medication Update

It’s been a while since I have written a full update on how Mr Man is doing and recent appointments and such. At the beginning of October I wrote how Mr Mans Risperdal (Risperidone) had been changed to Abilify (Aripiprazole) which he now takes in addition to the Clozaril that he has been taking since 2003. The change over period was a bit shaky, with Mr Man becoming quite paranoid and delusional, believing that our visitors were spies and questioning whether he was really ill or not. I had to keep a closer eye on him than usual for a little while, especially at medication times, as once he starts down that slippery slope of paranoia and delusion he is likely to start skipping medication secretly, which then of course leads to all kinds of problems.

It’s quite hard to gauge how much the Abilify has helped with Mr Mans positive symptoms as the changes have been gradual over a period of 7 months now. Also, for the two months before the switch these symptoms had worsened due to being on his own for two nights when there were no beds at the respite home, so to compare fairly with the Risperdal I would have to think back to over 9 months ago, which is quite difficult. It’s very obvious that the negative symptoms have improved now though and he has fewer side effects than before; he is usually more alert and less drowsy now, and his concentration is much better. In fact over the last 6 months or so he has accomplished a great deal and generally seems more motivated to engage in his hobbies. He has even talked about working again, and is keen to start his own web design business, although only if he can work from home and never leave the house!

I would also say that he is starting to interact better with more people now. Although he still can’t really cope with too many people all at once, he is definitely more willing to have company now and the list of individuals that he feels comfortable with is slowly growing.

One thing that the medication change hasn’t helped with is Mr Mans growing levels of anxiety. It’s difficult to say whether or not this problem still would have continued to worsen if he had stayed on the Risperdal, but the anxiety in itself isn’t a new problem. As I mentioned previously, Mr Mans CPN is taking this problem much more seriously now and last time he visited we talked about it at length. If only we had known more about anxiety when Mr Mans problems first started to escalate. We were using gradual exposure when we first started to tackle this issue, probably back in 2004, but Mr Mans anxiety suddenly and dramatically increased while he was out of the house on his own one day, and since then he hasn’t had the confidence to try it again. What we didn’t realise at the time though is that this experience is common and is known as the “anxiety burst”. Apparently, what we should have done is continue with the exposure, but at the time I didn’t know this and I was worried about pushing Mr Man too much and causing a relapse of his symptoms.

We saw Mr Mans Psychiatrist recently and discussed this ongoing anxiety problem. She decided to introduce an antidepressant called Citalopram, which is an idea that has been on the cards for a long time for various reasons but she felt that Mr Man needed to be more stable on his other medications first. Citalopram is the antidepressant that I take myself, and is well known for helping to control anxiety. Also, his Psychiatrist mentioned that it can help with “compulsive tendencies” as she called them, which is another problem that Mr Man has been suffering from. The most intrusive compulsive thought that he has, which is compounded by the voices, is that he feels he needs to continually add numbers together, such as 1 and 1 is 2, 2 and 2 is 4, 4 and 4 is 8, and so on, until he reaches 65,536. He always stops at that number and then starts all over again. When I asked him why, he said that there are 65,536 numbers that can be represented by 16 bits in binary. Now, binary is a concept way over my delicate little brain cells, but apparently it begins at 0 (zero) and the highest number in 16 bit binary is 65,535, which is 65,536 numbers in total including zero. I still don’t really see the connection myself, but it all makes perfect sense to him, and the more I said I didn’t understand the more detail he went into which confused me even more.

I can see why people say there is a fine line between genius and madness.

Finally

He finally “got it”. Mr Man has been suffering from high levels of anxiety for so long and his CPN just kept telling us “It’s normal to suffer a certain amount of anxiety” and “Just keep doing it (whatever was causing the anxiety) and it will get easier”. Well, a few weeks ago we were getting ready to go to a friends’ house for dinner and Mr Man started throwing up due to his anxiety. And now Mark finally gets it. He finally understands what we mean when we tell him that what Mr Man suffers from is not a “normal” level of anxiety. He finally agreed to speak to Mr Man’s Psychiatrist about possibly changing his Diazepam to something else. Finally. But did it really have to come to this?

Generally speaking, Mark seemed much more human than usual during his last visit. I usually find it difficult to take him seriously for two reasons: one is that he looks like he ought to be a group member from The Village People; and two is that it’s difficult to take someone seriously when you feel like they haven’t got a clue. But this time, instead of handing out useless pieces of advice like colour swatches at a “blind” convention, he actually asked questions, and more importantly, he listened to and accepted what we had to say regarding Mr Mans anxiety. Finally.

After explaining how upset we were about the cutbacks at the respite home, he addressed the issue of my carers assessment and asked me: “Is this why you want a carers assessment? Are you hoping that once your needs are recognised they will be met?” I agreed that this was the case and he simply replied with “They won’t be. The services just aren’t available”. He then went on to explain how they are expecting many more thousands of pounds to be taken away from these services, and job losses too. No wonder he didn’t seem so cocky that day. “I feel a letter of complaint coming on” I said*, “Please do” he replied. I actually felt like we were on the same side for once. Finally.

Before he left, Mark still felt the need to advise Mr Man not to let his recent experience make him give up trying to go out, which Mr Man rather resented. He obviously still doesn’t appreciate how hard Mr Man tries to fight these feelings. Every week he forces himself to go out to play Table Tennis, and he physically shakes so much that even the other team members have started to comment on it. But he still goes, week after week. I’m very proud of him.

Maybe one day Mark will be too. Finally.



*This was nearly 3 weeks ago but as mentioned in my previous post I have been avoiding writing this letter until now.