Shuffling

It's a ridiculous length of time since I last posted, for which I apologise, but I really don't know what to say.  I'm sort of shuffling along, and I guess things are a little better than they were, but it's hard to see it day-to-day.

I'm not getting very much from the CPN, and have given up any expectations I had.  It's not that she isn't coming to visit, but more a difference in personalities, a clash of ideas of what might be helpful, and ... hmm ... how do I phrase this? ... I don't feel respected.  She obviously isn't a Christian, which shouldn't matter, and hasn't mattered in the past with other clinicians, and actually it shouldn't impact at all on the patient-CPN relationship, but it does because she dismisses my beliefs as unimportant at best, and as a sign of mental illness at worst.  I don't necessarily expect her to share my Christian beliefs, but I do expect her to respect them and not treat me as a nutter simply because I have a Christian faith.  I don't have extremist beliefs.  I'm not part of some strange cult or sect.  I am part of an Anglican Church community in the neighbouring parish to where I live, and within that community, some of my views are quite liberal.  All of it is far removed from anything that could be considered even remotely crazy.  So yes, it's tricky with her.  I feel as though I have to seem willing to try and at least give it a go, but I no longer have any expectations of helpfulness.

It's not just the thing about her response to my faith, there are other things too.  I suppose most significantly is that a lot of the time she makes me feel like I'm just a case study for her student.  I'm 'good experience' for her; I'm 'something interesting to look up' when they get back to the office; I'm a 'good example of a high functioning, intelligent depressive'; I'm 'a complex and interesting case' for the student to follow through, and 'Oh, wouldn't it be good if the student could see [me] get well, although she's only on this placement for another three week.'  No pressure then!

Thankfully I still have the psychologist who continues to be helpful.  The sessions are hard work, but I trust the psychologist and feel able to tell her anything, even if it's sometimes difficult to say the words.  The difficulty is in expressing myself or trusting myself with the words (which, I am aware, sounds odd), rather than difficulty with trusting the psychologist.

There's still a degree of crisis management being needed in the psychology sessions, and when it's not quite crisis management it's kind of one step removed from that - maybe day to day management rather than minute to minute.  Eventually I will be doing some specific work on the flashback aspect of the PTSD, but the psychologist wants me to be a lot more stable and feeling much more robust than I currently am because it's very demanding.  I know this from previous CBT I've had for totally different reasons, so in many ways I'm in no hurry to start this work, but on the other hand, 'life' with PTSD is crushing.

Between appointments with the psychologist and the CPN I do feel like I'm just shuffling.  I keep trying to write, but it keeps not happening - you have born witness to my lack of writing even on my blog - although I have managed to do some editing last week for an acquaintance's End of Module Assessment for their current Open University course.  My brain wasn't in the best place for doing it, because concentrating is still difficult, but it did make me feel useful and it was productive, so the hard work was worth it.  The other thing I have been doing is playing the violin a bit.  I used to play a lot.  At one time in the past it felt as though my violin was an extension of me, and although I'm not back to that stage, it does feel good to have that creative outlet again.  I started off with playing the piano again a few weeks ago, and I'm still doing a bit of that, but I get different things from the piano and violin, and it kind of feels like the bit of brain that does the violin playing is perhaps next to the bit of brain that does writing.  I'm hoping that the violin-playing bit might nudge awake the writing bit and get it working again.  I've mostly been playing one piece of music - Bach's Concerto for Violin and Oboe in D minor, although I've been playing the oboe part on the violin as this is the part my old violin teacher had me play.  It may only be three movements long, but I can spend a couple of hours playing, replaying, and taking this piece apart.  I play along to a CD recording so that I get the experience of playing the whole piece with an orchestra.  I'm not sure my neighbours appreciate it, but I try to ignore that and instead get absorbed in the music.  Even though I'm not able to do it every day, I think the fact that I can do it at all is progress, and maybe, just maybe it'll even help me progress further.

I'm sure there was something else I was going to say, but my mind seems to have turned to mush and suddenly I can't think where this post was going.  I guess it's part of the shuffle - it's a bit directionless, but with a general hope that it might be vaguely forwards.  Um, yes, so er, I've completely forgotten where this was going so I'll stop, but I'm hoping to get back well before the time between this post and the previous one.

Beyond the CATT

It's the early hours of the morning and, yet again, I can't sleep.  I haven't slept properly since just before my hospital admission in the middle of January.  I am chronically sleep deprived, utterly exhausted, but getting to sleep is a real problem.  Even once I do eventually get to sleep I dream of violent and upsetting things, or have dreams based upon the realities of what happened during my last admission.  No sleep is restful and I am so tired that I feel as though my brain is melting.

The whole sleep thing is doing nothing to help my mental health in general, and it's most likely making things worse.  I'm doing all that I can to help myself - doing all that's asked of me and suggested to me by the professionals and helpful friends - but the extreme tiredness is crippling and inhibits any success those things may have.

In the past week I've also been finding things more difficult because the supportive input has been cut back.  The crisis team (CATT) said they thought it was the right time for me to be moved on and have my care transferred to the Community Mental Health Team (CMHT) as they can provide more long-term support.  The problem with this for me, though, is that CATT were coming to see me at least every other day, but the CMHT can only come a maximum of once a week, and I feel like I still need more input than that.

I was appointed a Community Psychiatric Nurse (CPN) from the CMHT, and on Wednesday last week I had a joint meeting with her and a member of CATT who'd seen me quite a lot during my time on their caseload.  It went okay, I guess, but it's going to take time to get to know my CPN, how she works, and what she can do with/for me.  She came again on Monday, and to be honest I didn't feel like it was very helpful.  I was feeling distracted by the chaos in my flat caused by the arrival of my new cooker at the weekend, which was sitting in the living room until it could be installed later in the week.  I couldn't think.  I couldn't concentrate.  I couldn't work out my feelings.  The phone kept ringing with junk callers, and although I let the answer machine take the calls, I still felt distracted.  In fact, it all felt rather disorienting, even though I was in my own home.  I couldn't connect either with the CPN or with myself, and it didn't help that my lungs were being really twitchy too.

We made another appointment for her to visit me, but that won't be until Wednesday next week.  That's nine days between appointments, which is an almost incomprehensible length of time for me at the moment, and so very different from the two days (at most) between appointments I've been having with CATT.  I've been told that I can still call the CATT helpline number if I need to, and I have done once, but seeing as I'm not really under CATT's care any more it feels like I'm breaking the rules ... even though I'm not.  Yes, this is something only I can change, but it's not easy.  Nothing is easy at the moment.

You know, the other thing that I'm finding difficult about all of this is the simple thing of me needing to have this referral to the CMHT, and to be needing a CPN again.  I'm disappointed in myself, hugely disappointed.  Depression had been an awful part of my past that I'd moved away from.  I'd got my antidepressant dose down to the bare minimum.  I'd had very little contact with any of the mental health services for a number of years, and last year had finally been discharged by the psychiatrist.  I had two months short of ten years of freedom from depression, despite increasing difficulties with my physical health.  I studied hard and got two degrees, writing the majority of my essays for those degrees in hospital, sometimes in my head while I was fighting for life in intensive care (distraction from the horrendous things happening to me).  Suddenly I've ended up back in the midst of depression.  I've had input from the crisis team, and now I have a CPN again, and a re-referral to the psychiatrist.

This is not what I want!  This is not who I am supposed to be any more!  I'm so angry at myself for ending up back in this place and needing these people and services!  I had opted for life, but now it feels like all life has been sapped from me again, and I'm so cross that I've let myself fall back so very far, and worst of all is that I don't know how to get out of this.

Many have said, 'You've come through it before, so you can come through it again.'  That's not helpful.  It's really not helpful.  Last time I 'got through it' because I had a miraculous healing from God at 4pm on Monday 5th May.  My healing wasn't anything to do with me, or medication, or circumstances, or psychology, or psychiatry, or anything else.  The healing was from God and was instantaneous.  I'm not a fool and I know that not only can I not expect this to happen again, but it is incredibly unlikely to happen again.  The chances of it happening even once are minuscule, let alone twice.  I have no experience of coming out of depression in any other way, and as it was nothing that I did then I don't know how to get to that point.  I don't know how to get well, and that scares me.  And I feel so guilty because I feel as though God gave me that amazing gift of my miracle moment and I can't have looked after it well enough because here I am back in depression.  I've let God down.  I've let everyone down, myself included, but I am ashamed to have let God down.

Trauma

I'm afraid to say that I'm still not doing well on the emotional front.  Part of the reason I haven't posted for so long is because I've wanted to be more positive and more like my usual self when I've posted, but I've come to realise that if I do then then I'll be waiting a very long time, as will you.  The fact of the matter is that things are tough - very tough - the Crisis Team are still seeing me every two days, and I'm still phoning their support line most nights.

Most people wouldn't think of asthma as traumatic.  Most people think of it as a mild condition of childhood that's easily treated with a couple of puffs of an inhaler, and at some point the child will grow out of it.  This can be the case for some, perhaps for most, but for a minority asthma can be severe (and anyone with any 'level' of asthma can have a severe attack at any time).  For some, asthma can be life-threatening, and for an even smaller minority it can be repeatedly life-threatening.  I'm in that minority of the minority, but just because I've gone through a huge number of life-threatening/near-fatal asthma attacks, it doesn't mean that it gets easier.  Yes, I know what's happening, and I know what to expect in terms of treatment, but I never know if I'm going to survive.  The fear never goes away.

I'm good at keeping as calm as possible when I'm in the throes of a severe asthma attack - it's been commented on by medical staff more than once - but the fear and anxiety is merely under control, rather than absent.  It has to come out sometime.

For several years I have seemingly bounced back after each severe attack.  I've been tired, and it's taken a while to get my physical strength back, but I often haven't given enough attention to the emotional trauma.  Instead I've thrown myself back in to studies, concentrated on whatever essay or piece of creative writing I've had to do, and looked towards getting my degrees.  I have those degrees now.  I don't have essays to produce or books to study.  I don't have a guided focus.  I do have the two books I'm meant to be writing, but I can't concentrate on them.  I can't focus.  I can't get my words out sufficiently.  Even writing this is a real struggle.

To some extent, all these things have provided distraction when I've been discharged from hospital, but the counter-side is that they've also stopped me from dealing with the trauma of the events.  My last admission was particularly traumatic.  I felt traumatised at the time of the attack, and in the days immediately following it (after I'd been transferred from ITU to the respiratory ward), but then there was the severe pyelonephritis (kidney infection) on top of it all, and the combination has been overwhelming.  I have now been diagnosed as having Post Traumatic Stress Disorder.

My psychologist is good - helpful, attentive, works with me in partnership, works me hard, and I trust her.  None of that makes therapy easy - therapy is never easy - but it reduces any anxiety I have about talking about some aspects of the trauma.  However, at the moment we're having to fire fighting therapy - crisis management - so planning sessions from week to week isn't really working. Instead we have to deal with whatever is the most pressing and distressing thing at the time.  They're all connected, all part of the PTSD and depression, but some of the 'symptoms' are themselves distressing.

I was going to write some more, but I keep zoning out (dissociating) - one of the PTSD symptoms I've recently been finding very distressing (at least in the aftermath).  It's taken me two hours to write what I have!  Maybe I'll write some more about this at another time, but for now I'll have to leave it here.  Apologies if this doesn't all make sense.

Anniversary

Two years ago today my younger step-brother went missing and killed himself.  We didn't know that he'd killed himself until he was found three days later on 6th April, but it was on 3rd April that he went to a hotel and hanged himself.  I hadn't seen him for some time before he did that, but all the same, I miss him so much.

I feel completely alone with my grief, and yes, I am still grieving.  There isn't really anyone who knew Nn with whom I can talk about him, or talk about missing him and still grieving for him.  I tried a while back, but my feelings were nullified because they 'found him very difficult.'  There seemed to be a complete absence of acknowledgement that Nn had been a significant figure in my childhood and in my growing up, simply because this person had only known him in the latter years of his life when he was ravaged by years of drug abuse.  Yes, I know that he had become a challenging character - I don't deny that - but he wasn't all bad and he never had been.  He was still my step-brother.  He had been a big part of my life for a lot of years.  We had shared a lot of what life had thrown at us.  He was important to me.  But none of that was remembered or seemed significant to the person I tried to speak with, and I was squashed.

No one else seems to want to talk about him.  Never.  Not about anything.  Not his life.  Not his death.  Not the times we all shared together.  Not the times he found it so difficult to be with anyone.  Sometimes I even wonder if they remember him at all.  I do, and I miss him.

I have a thousand and more memories of Nn whizzing through my mind this morning, some good, some not so good.  All of them important to me.  We were children when we entered each others lives - I was nine; Nn was seven - and from then on we spent every weekend together and hundreds of weeks of school holidays together.  We shared a parent/parent-figure.  He envied me because the parent was biologically mine, but I envied him because he had every day with that parent.  There was rivalry, but there was also friendship and shared interests, and thousands of hours of play together.

The memories I have are now all that I have of him.  Well, those and a couple of photos.  I will never see Nn again, and the last time I was in the same room as him was at his funeral.  I didn't even get to be at the scattering of his ashes because I was ill in hospital, and I so wish I had been able to be there, to see him off, to watch him catch his very last waves ... His ashes were scattered at sea because he used to love surfing.  I can go to the beach where he learnt to surf - where I did body-boarding while he surfed because I never could get the hang of standing on the surf board - but being there with my memories of him is a million times different from being there with him, or seeing him there.  I watch others on the same stretch of surf, I remember Nn, and I miss him so much.

I think about him two years in the past from now.  I think how he would still have been alive at this time of day.  I think about him being at work, because he did go to work that morning, but I also think about the distress he must have been feeling too.  I think about how twelve hours from now he was probably either dead or preparing for death.  I think about how he would have checked himself in to the hotel knowing that he would only leave it dead.  I think about annoyed and frustrated his employers probably felt that he didn't turn up for his afternoon shift.  I think about what Nn may have been doing while he was supposed to be at work.  I think about his mobile phone picking up messages while he hung dead in the hotel room.  I think about him being there for three days.  I think about the person who found him.

I think a lot of things.

I miss him.

I cry for him.

I cry for me.

Bits

I hate feeling like this.  I hate being so unhappy, tired, and anxious all the time.  I try to relax with distraction, with breathing exercises, with systematic relaxation, with some of the principles of mindfulness, with making myself go out and about even when I don't feel like it, with music, with the radio, with the telly, with almost anything I can think of, but nothing works long-term.  By the end of the day I'm exhausted from lack of sleep the previous night, from anxiety, from flashbacks, from the depression itself, from trying to distract myself from all of this.  I run out of ways to cope (or making a pretence of coping), and all the mess comes rising to the surface.  I can't sleep.  The images, sensations, feelings, anxieties, negative and intrusive thoughts, and all the upset crowd in on me and threaten to drown me.  By this time I'm beyond being able to distract myself any further, having had to do so all through the day, and I feel like I'm drowning.  I don't sleep.  I cry.  I toss and turn.  I relive the traumas that haunt me.  Alone and afraid, feeling weak and vulnerable, I lose myself in my upset.

I was supposed to have gone up to Edinburgh on Saturday and be spending this week up there with my mum and step-dad.  When it came to it, I didn't feel able to go and actually needed to stay here where the professional support is trying to hold me up.  My mum and step-dad came down to me for Easter instead, and last night/early this morning Mum checked in on me to see if I was asleep.  I wasn't.  I couldn't.  My insides were churning and my mind whirring in never ending arguments with myself, thoughts and general mess.  She sat with me, held my hand, and stroked my head like she did when I was a young child.  I felt so little, vulnerable, and fragile; and tears slipped from my eyes and dampened my pillow.  Eventually I felt safe in Mum's comfort, some of the anxiety was quelled, and sleep came.  I stirred a little when Mum got up off the side of my bed and went back to her bed in the living room, but I had been reassured.  I turned over and went back to sleep for four and a half hours.

Today I've caught myself chastising myself for needing that little girl comfort, that reassurance, but it helped, and I remind myself that it shouldn't matter that I'm 38 and needing what I had last night.   I have to tell myself that whatever I need at the moment to help me feel better, to relax, to have a rest from the brokenness is okay.  The chastising part of me continues to poke at me, and it's a battle to keep hold of the gentle, nurturing self.  I don't always succeed.  In fact, I often don't succeed.  I argue with myself and yet somehow manage to lose the argument.

One of the members of the crisis team (CATT) told me today that he thinks I can come through this.  I want to believe him because I so hate feeling this way, but I'm so tired that I'm not sure he's right.  I do all that I'm asked to help myself - I do more than I'm asked if I can think of anything - but nothing to date has made any great impact on my distress.  That, in itself, adds to the distress.

I don't remember if I'd said this to you before or not, but a few months ago I said to my psychologist that depression is a monster that tells you lies.  The logical part of my brain still believes this, but the bit that is over-powered by the monster can't hold on to this and believes all that Depression tells me.  I'm trapped.

Defeated

It's ages since I've posted.  I haven't known what to say.  I still don't know what to say.  I don't know where to begin...

...I'm struggling.  A lot.

I went to an appointment with the psychologist a week past Friday, which was supposed to be an hour long, but turned in to two hours.  Basically, I am a mess.  The psychologist wanted to call the CAT Team (Crisis Assessment and Treatment Team - for people experiencing mental health crises), but I was extremely reluctant for her to do so as I'd had such an awful experience of them ten years ago.  At that time they made things much, much worse for me and I swore that I would never let them in to my life again.  It's an indicator of where things are up to that, after much deliberation, discussion, and upset, I was persuaded to let the psychologist call them.  She talked with them at some length, expressing her deep concern for me, and suggested that I be admitted in to hospital for a while.  They said they would come out to my home to assess me that afternoon.

The psychologist seemed very unsure about letting me out of her office, unsure that I would be able to 'keep myself safe.'  To be honest, I wasn't sure I could do that either, but eventually I agreed to do so long enough to get home and be assessed by the CAT Team.

The CATT arrived as a trio - doctor, nurse, and medical student - forty-five minutes later than they said they would be, which wasn't a great start, but the nurse was one I recognised from the ward when I'd been an in-patient with depression many years ago.  That helped me to feel a little more at ease as I remembered he was one of the better nurses.  I spent an awful lot of my time with the CATT in tears, much as I'd spent my time with the psychologist, and after quite a lengthy assessment the three of them went and sat in the car outside to discuss me.  When they came back in five minutes later they had decided to opt for home treatment with daily visits and a 24/7 'carer's line' phone number.  My feelings about this were, and have continued to be, very mixed.

These past ten days have been bloody awful.  I'm not going to go in to details, but suffice to say that I'm not really coping with 'life' at the moment.  I have a couple of 'big' things going on, but primarily I'm in a state of post traumatic stress from my recent hospital admission, and severe depression from the accumulation of traumatic asthma attacks (and some other things too).

I have come to a stand-still, defeated by all that has happened, unable to bounce back as expected, as I have done previously.  I am trapped, once again, by the monster of depression, and above all else, I feel as though I have let everyone down.  Myself included.  God included.  Especially God.

I am continually told that I'm strong, but believe me, I'm not.  I am now very, very broken and very, very weak.  It isn't helpful to tell me I'm strong, so please don't.  I need to be allowed to be however I am, and telling me that I'm strong makes me feel even more as though I've let everyone down because I know that I am so very broken right now.

Difficult

Hmm, I'm supposing you've guessed that I'm having a difficult time at the moment, that I'm not really coping too well.  Not a lot has changed since I last posted, and I haven't updated till now because I haven't wanted to bore you with the same old stuff over and over ... I reckon once in a while is okay, though, right?  So here it is...

I saw the psychologist a week ago.  As has always been the case with her, she was good.  It's never easy, and it's hard to say with such things that they're ever good experiences, but I think I've been lucky to be allocated the psychologist I have.

I'm not going to say anything about the content of last week's therapy session, because that's between me and the psychologist, but what I will say is that I was honest with her.  I had to be, and really, what is the point of therapy if you're not going to be honest with the therapist?  The session actually went a little over time, which is very unusual for therapy, but such was the nature of the session and of my need.

Two hours after my appointment with the psychologist I was due to see my GP, and by the time I got there my psychologist had already phoned the doctor to express her concerns.  She also tried to persuade the doctor to prescribe some sleeping tablets for me as I'm getting very little sleep and finding it incredibly difficult to get to sleep (it's more often than not at least 5am, and it's not unusual for it to be 7 or 8am before I get to sleep).  The lack of sleep is most likely contributing to my state of mind and general state of stress of at the moment, but the GP won't prescribe sleeping tablets of any description because all of them can suppress breathing.  She doesn't want to risk that with me, and tells me it's not worth it, and I can see where she's coming from, but I'm knacked.  I'm trying all the 'sleep hygiene' stuff, but it's not currently working for me, and I'm spending most of each night getting up after another 30 minutes of failing to get to sleep, sitting in the dark/dim light, doing very little, going back to bed, and failing to get to sleep.

So yes, the GP talked with me, but of course has no quick fix, or in fact any fix, but she's there.  The psychologist has been away this week, so the GP wanted to see me instead so that she could keep an eye on me/things with me.  I saw her yesterday.  Nothing much to report, but again, she's there, and it's probably a good thing that she knows the state of play even if she can't do anything about it.  As others have said, she too said that it's just going to take time, but she understands the complexities of my situation with recent events still fully to get my head around, and multiple factors around my health in general.  It's not about feeling sorry for myself; it's about coping with the challenges my health issues lay before me, the impact they have on my life, the way they've changed the course of my life, and how they continue to change every aspect of my life, always moving the boundaries.  Lots of things.  Too many things to try to mention, and perhaps I don't want to mention them simply because that feels like trying to justify them.  I'm not going to get in to that.

The psychologist is back next week, not until the end of the week, which seems like an impossible time away, but I suppose it'll arrive eventually.  In the meantime I have four other hospital appointments to get myself to next week, one of them at the ridiculous time of 9am.  Not so ridiculous if you have a normal sleep pattern, but if I don't get to sleep till 7am, then that'll leave me with about half an hour's kip.  I can only hope that the night before that appointment is better than anticipated.  To be honest, a week of hospital appointments isn't really what I need at the moment. I could do with some time trying to concentrate on things other than my health - or lack of it - but next week I have no choice.

I feel like I'm beginning not to make much sense or that I'm going round in circles.  Maybe it's more in my head than coming out like that on the 'page', but I think I'm going to have to end this post here.  Perhaps next time I post I'll be somewhere closer to myself, but apologies in advance if I'm not.