Out Of Control – Me On Steroids

There I was, having been told that there was a good chance that my hearing loss was due to my own actions. Not an easy thing to deal with. Part of me absolutely felt angry with myself, was blaming myself; I have a natural tendency to be very hard on myself – especially when the consequences of my actions turn out to be severely negative. But, there was also another part that just felt confused, because whilst the second most recent overdose was certainly a serious one, the most recent one was one where I didn’t ingest more than about half a teaspoon of the chemical, and I couldn’t quite understand how it could have had such a drastic effect on my hearing. But, clearly it had.

The ENT specialist had prescribed a high dose of Prednisolone which I was to take for a week in the hope that it may reverse some of the recent hearing loss. The name of the medication did ring a bell at the time, but not loudly enough for me to clock why, so I went down to the hospital pharmacy and picked the medicine up. It wasn’t until I got home that I remembered that this was a medication which a previous GP had refused to prescribe when my asthma was really bad, because she felt it was too much of a risk, putting me on it. There were two reasons for this: firstly, that people with a history of serious mental health issues are particularly prone to react badly to this medicine, and, secondly, that I have in the past had extreme adverse reactions to three other medications [one of which I was reacting to when I took the second most recent overdose], so the doctors are always very cautious about prescribing any non-essential new meds to me.

But, there I was with the medication in my hand, not knowing whether or not it would really be a good idea to take it. Yes, this medication could potentially save me from needing cochlear implants down the line, but, at the same time, if I did have a really bad reaction I could end up putting myself at considerable risk. The ENT specialist wasn’t someone who knew me well [or at all, really], so when he prescribed it, he did it on the same premises he would for anyone else; ‘Worth trying, no harm done if it doesn’t work’, whereas I knew that this medication could spell real trouble for me.

There was a part of me that was genuinely scared of a bad reaction; I knew perfectly well the horrible feeling of being out of control because of a medication. I had been through it three times.. Yet, there was another part that so badly wanted to be able to do something to reverse the damage I had apparently caused.

I spent a week going back and forth, unable to decide what to do, talking it through with lots of people, knowing full well that, ultimately, it was still my decision to make. I did speak to my GP [well, technically, the receptionist spoke to her on my behalf], and she said that it would be ‘perfectly fine’ for me to take the steroids, and – after all – I had had no adverse reactions to the steroid injections I was given when treated for anaphylaxis.

In the end I decided that I would give it a go, because I knew that if I didn’t I would always be wondering ‘What if..? What if..?’.

Still, to be on the safe side, I decided to start the course early Monday morning, so that if I did have a bad reaction I would be seeing P. later that day. [With two of the three medications I had previously reacted badly to, it had happened literally within a few hours of taking the first dose]. I also had a doctor’s appointment on Tuesday, and scheduled a ‘just-in-case’ appointment with K., my synagogue social worker who I have been seeing semi-regularly, for Wednesday afternoon.

Monday came round and I took the first dose, which – as this was a high dose treatment – was a good handful of pills, making me feel as if I was actually overdosing on tablets. By the time I was due to see P. – about six hours later – I already knew something wasn’t right. I could feel things firing in my brain, rapid electric sparks in my head, and it was as if I couldn’t keep track of my own thoughts. It was a truly bizarre experience. – Anyone who has ever been seen by the mental health crisis team knows that one of the questions you will be asked during the assessment is ‘Are you having racing thoughts?’. Being prone to deep depression and suicidal ideation rather than mania I have always answered ‘No’ to that question, not really knowing what ‘racing thoughts’ actually were. I’m telling you, by noon that Monday I knew exactly what they were – and it was freaking me out, big time!

So, I had a crazy rambling session with P. that day, very unlike any other session I have ever had. I also spoke to H., my care coordinator, that same afternoon and she sorted out a referral to the crisis resolution team for Wednesday, as it was clear I was not in a good way and would likely need the extra support, particularly over the weekend.

On Tuesday morning I went to see the doctor – an absolutely lovely F2 who I hadn’t met before. By then I had taken the second dose of Prednisolone – more out of a sort of manic compulsion than anything else – and consequently the reaction was getting worse. I had also used a surgical scalpel and cut myself very badly in two places; enough to warrant stitches. The doctor’s reaction was ‘Come off these meds immediately – this is a really serious and abnormal reaction!’.

I explained to her the reason why I was on the treatment in the first place and why I was finding it hard to ‘just stop taking the meds’, and this young doctor was absolutely brilliant. She sat back and listened to me carefully and then took the time to make five or six phone calls – while I was still in the room – to get hold of an ENT registrar to find out what the implications of stopping the treatment would be for my hearing, so that we’d be able to make an informed decision. The ENT registrar told her that as treatment had been delayed by several months already [Urgent NHS referral, remember?] it was unlikely that my hearing would improve, that the specialist who prescribed the steroids probably felt it was worth a shot – even if it was a shot in the dark – because sometimes people do respond, even with delayed treatment. But, the registrar concluded, in light of the extreme reaction I was having it certainly wasn’t worth staying on the meds, as the odds of success were so small.

I felt really reassured in that moment that I wouldn’t be missing out if I ended treatment prematurely, because the odds of any improvement were so small. It made complete sense to stop taking the meds.

But, then I got home, and I was still hyper and there was so much in me saying that firstly I was already dealing with the adverse effects of this medication [the GP had explained that it would more than likely be a few days, maybe even a week, before the chemicals in my body would stop messing with my brain].. and it was only a few more days to go.. and what’s to say that I couldn’t have an equally abnormal positive reaction to these meds..? After all, my body is clearly highly sensitive to small chemical changes..

So, the next morning I took the third dose, against medical advice. This time it wasn’t manic compulsion that made me do it, but that part of me that just needed to hold on to hope, that simply couldn’t give up, even though everyone around me felt this was a very bad decision, indeed.

I spent time in my session with P. that day, exploring why it was so terribly hard for me to stop taking the tablets, even though the rational part of me knew that the chance of a positive outcome was incredibly slim – and that was really helpful, even with the chaos raging in my head.

I also had a good chat with K. that afternoon. She was characteristically open, direct and honest with me both about her anger and her disappointment that I had carried on taking the medication in spite of what the doctor had told me, and in spite of the fact that I had felt completely reassured at that point that I wasn’t missing out. I told her that I would think very carefully about handing the meds in to P. the next day, but I was also clear that I wasn’t prepared to make any definite promises, because I simply didn’t feel that I could. So much of me felt out of control and I just couldn’t say that I’d be able to do that, come morning.

Oddly, the thing that made me realise just how out of control I really was wasn’t the fact that I had cut myself so badly, but the fact that I found myself at a McDonald’s having a Big Mac.. I’ve been a vegetarian for something like twenty years, and I keep sort-of-kosher, so for me to sit down and eat something like that goes against so much of what I believe in. It is something I simply wouldn’t ever do, if I were in control of my actions..

I did end up giving P. the tablets the following day, but not before having taken a fourth dose that morning, this time – again – in a very compulsive manner. There was no reasoning whatsoever, just acting: I simply couldn’t not take them. This made me realise that I really needed to view the tablets in the same way I did my scalpels and cords [all of which I had handed in to P. two days earlier, feeling too out of control to be safe with them]; while I was still having this strange reaction I just couldn’t manage the tablets responsibly.

It took a good while after that final dose before I felt completely back to my normal in-control self, and I carried on working with the crisis resolution team through the weekend and most of the following week, just to be safe.

I am really glad that I had as much support available to me as I did during this time, because it was incredibly frightening to be so out of control. The experience was very different to other times when I have felt out of control. Whilst what came out in the midst of this whole ordeal – feelings, thoughts etc – were things that were almost certainly already brewing inside, it was – at least the way I look at it – triggered by outside factors. And that’s quite a scary thing.

All the very best,

xx

Consequences Of One’s Actions

A lot has been going on in the last few weeks [or is it months?] since my last proper post. There have been some serious ups and downs, and I don’t quite know where to start.. So, I’ll just start with what’s on my mind right in this moment: my hearing. Or, rather, the lack thereof.

I’ve not really written about this before, because up until about a year ago, it’s not really been too much of an issue, or at least it has been an issue I have had the luxury of being able to ignore.

As my long standing friends will know I lost a big chunk of my hearing many many years ago, when I was about twenty. I was doing voluntary work at an orphanage in a village outside a village outside another village, in the Middle Of Nowhere, India. It was Diwali, the Hindu festival of light, and as a special treat for the children we had bought fireworks and penny crackers, which they were allowed to set off. All was going great, big bright smiles all around, lots of happy dancing and singing.

Until one of the kids threw a firecracker up in the air and it exploded right next to my left ear. My whole world went silent in an instant. It was one of the most terrifying experiences of my life, that sudden and complete absence of sound. I remember screaming, but not being able to hear the sound of my own voice.

Over the next hours and days some hearing in my right ear did come back, but the hearing in my left ear was almost entirely gone. I managed to see a doctor when I went into town a few days later. He very carefully examined my ear and hearing and confirmed the damage with a simple “This is not good” and a slow, sad shake of his head.

And that’s pretty much how it’s been until recently. I knew I could probably be helped by wearing a hearing aid, but I simply wasn’t ready for it, and since I was able to use the remaining hearing in my right ear well enough to compensate for the loss in the left, I just left it at that. Something was broken, but not enough to bother fixing it.. There has been a lot of “If you want me to hear you, you’ll need to walk on my right – if you’re only going to talk rubbish, stay on the left” going on over the years, but all in all, through a combination of lip reading, context deduction and plain ol’ guesswork, I’ve been able to fake hearing pretty darn well. It’s amazing how easy it is to just laugh when everyone else laughs at the end of a joke you haven’t even heard, or to cover up giving the wrong answer to a question..

However, a bit over a year ago I started noticing that I was no longer as able to compensate with my ‘good’ ear as I used to be, and – being fifteen odd years older – I decided that it was kind of silly to routinely pretend being able to hear when I couldn’t, and that I should really do something about it. So, I went to have a test.

The results were shocking; not only was the hearing in my left ear really poor, my right ear was also significantly worse than I had thought. I was advised that I was a prime candidate for double hearing aids, and that I should get my GP to sort out a referral [private hearing aids are horrendously expensive].

A number of months later I was finally given an appointment at an NHS hospital. Only by the time I had that second round of hearing tests there had been a distinct further drop in my hearing, particularly in my right ear, and as this wasn’t normal I needed to be seen by an ENT specialist. The audiologist told me that this kind of drop could quite possibly be down to an acoustic neuroma – a fancy way of saying that I might have a brain tumour affecting my hearing. Consequently, an Urgent Referral to an ENT specialist was made. For those of you who don’t know, an Urgent Referral in NHS/ENT terms means ‘probably around three months’. Thus, I spent three months trying to not give myself cancer by worrying about this possible tumour, while not being able to hear what people were saying, since hearing aids can’t be issued while you are still under investigation.

The three months passed and I very nervously went for my appointment, having absolutely no idea what to expect. It turns out that in those three months since my last appointment a second drop in hearing had occurred. More bad news. On some level I kind of knew this, but I had talked myself into believing that the drop was ‘just in my head’, that it was simply down to a higher awareness of my hearing loss, having now stopped pretending to be able to hear when I can’t – but – the audiogram clearly showed that this was a genuine drop, and not something I had imagined.

The ENT specialist sat me down and took an extremely detailed medical history, after which he concluded that it was exceedingly unlikely to be an acoustic neuroma, as only 13 people in 1,000,000 have them, and that my sudden sensorineural hearing loss [SSNHL] was far more likely to have been caused by my two most recent overdoses, as the drops follow that pattern precisely, and the chemical I had taken is well known to cause hearing loss in those who survive the overdose.

Needless to say, to me, this was quite a powerful emotional bombshell. I had been medically cleared after those overdoses and there had seemed to be no lasting damage.. But, clearly, this was not so, and I was now seeing the consequences of my actions in black and white.

The ENT person said that it was possible that the SSNHL might not be permanent, and that a short, high dose, course of steroids might jump start some hearing cells in my ear, partially reversing some of the loss. Ideally this kind of treatment is given within days of the hearing loss occurring, rather than months later, so it was in no way certain that the treatment would work, but he felt that it was definitely worth giving it a go, because whilst there wasn’t really anything to be done about the hearing loss caused by the initial blast trauma, there was still a slim chance that the more recent drop could be helped. I’d still need hearing aids, he told me, but I might be able to avoid cochlear implants further down the line.

I’m going to end this update here, simply because this is already a massively long post, but, I will write more about what happened with the steroid treatment and my hearing in the next few days.

I feel very aware that I haven’t really talked about the emotional impact of not being able to hear, or the fact that part of my hearing loss may have been caused by my own actions, and I hope that I will be able to touch more on that in the second part of this saga, because – of course – this is a big deal.

Until then, do be kind to your Selfs.

xx

PS. I’ve yet to sort my PC out, so I do apologise if the formatting of this post is a bit rubbish; it was all typed on an iDevice, and that’s a lot fiddlier than one might imagine..

I’m Alive, I’m A Mess

It’s been a physically and emotionally exhausting few days and I really ought to be asleep right now. It’s 4.30am at the time of writing, yet, inspite of being tired in the extreme sleep evades me.

Things have been shaky in the last few weeks, to say the least. A lot of flashbacks, and on top of that I’m on a hormone triggering treatment which makes me even less stable than normal. We are talking an emotional rollercoaster of going from blue skies to pitch dark in seconds flat, up and down, round and round. Not an enjoyable ride in any way, shape or form.

And at some point in the midst of all that my poor impulse control won over the utilisation of coping strategies; I decided that having a bit of ethylene glycol would be a good idea. I think it was only a tiny amount to start with, certainly less than a mouthful. I knew that was a really bad idea, and the following night when I felt the urge I rang the mental health crisis resolution team under whose care I’ve been the last three weeks (with a break in the middle, where I went to stay with my sisters). It was about 1am when I rang and talking seemed to help; by the end of the call I had agreed with K., (the person who was working the night shift), that I would come in to see them at ten that morning and bring the bottle of ethylene glycol for safe disposal. That felt both scary and good. It’s kind of hard to explain, but there is something about having the means to kill myself readily available that feels like a safety net of sorts, something that gives me a feeling of being in control. Twisted logic, for sure, but there you have it. But, it also felt good, the idea that someone would relieve me of this deadly stuff,would, in a sense, save me from myself.

Two hours later I once again felt myself plummeting into darkness and I picked up the phone again, since I had found it helpful the last time, and talked again to K. for some time. I may have come across somewhat incoherent because she asked me if I had ‘tasted’ any more of ‘that toxic chemical’. I said I hadn’t but in the same instance shot a glance at the plastic bottle and it was immediately clear that there was a whole lot more than ‘less than a mouthful’ missing. Alarmingly, I genuinely have no recollection of downing a large amount of this sickly-sweet substance. In fact, and I said as much to K., I wasn’t even sure if I had actually drunk it or maybe just spilled it. Or when this had happened. Still, as there was certainly more than a lethal amount missing from the bottle I agreed to let K. call for an ambulance – but, not before saying ‘Can you wait half an hour to call so I can have a shower first?’, to which she calmly explained that having a shower at three in the morning when you have potentially consumed enough poison to kill yourself was hardly a priority. So instead I started stuffing things into bags: iPad, iPod, mobile, chargers, clean underwear, toothbrush, EpiPen, my journal, a random bunch of puzzle cubes and even my prayer book. I have no idea where this sudden organisational skill came from, I normally have to write lists to make sure I don’t forget things when I pack a bag, but there I was, five minutes later, fully equipped to spend a long time in hospital, should it come to that. Then I told K., who was still on the line with me, that I was going to go outside to wait for the ambulance, promptly grabbed my bags and made it down two flights of stairs and out onto the pavement outside my house.. where I laid down to sleep while I was waiting for the ambulance to arrive. K. kept talking to me, trying to convince me that while it was OK to lay down, if I was too dizzy to stand up, I really needed to stay awake.

The paramedics arrived and got me into the ambulance with some difficulty as my legs refused to carry me properly. They asked a tonne of questions, all of which I answered in something of a drunken stupor. K. had already told them what I had taken, which was probably a good thing as they would more than likely otherwise have assumed I was just another overly refreshed Saturday night party-goer, and might not have realised that time was pretty darn critical. Also, I had brought the bottle with me so they could see exactly what I had drunk and how much was missing. I mainly just remember babbling like crazy in the ambulance before passing out, and the paramedic pinching at the nerves on my shoulders over and over to get me to stay awake.

In A&E I was first put on a drip of pure ethanol, which is one of two antidotes to ethylene glycol poisoning, followed by a number of rounds of Fomepizol. Hurt crazybad, I can tell you that much for nothing. (Imagine the sting of cleaning a wound with rubbing alcohol, and then imagine that kind of stuff going straight into your bloodstream, and you’ll get a fair idea).

The side effect of this, having bare spirit pumped into me was that I got drunker than I have ever been in my life. I’m not someone who drinks particularly often, so I have a very low tolerance to alcohol, and here they were giving me as much as they could based on my weight. Suddenly absolutely everything was hilarious beyond comprehension. I was giggling and rambling and apologising left right and centre, trying to explain that They were making me drunk. In the midst of that I decided that sending a text to let people know I was in hospital was a good idea, only – I discovered later – the text made very little sense, and I managed to send it to a whole bunch of people I wouldn’t knowingly have sent them to.

At one point a friend of mine, having seen my text, rang me (this was as I was being wheeled into a ward, still apologising profusely for my drunkenness) and all she got was me laughing, unable to explain what had happened. Later, when she came to visit me, she said that it wasn’t exactly what she had expected when she called to hear if I was still alive..

Whilst being drunk was not all that bad, it did mean that I was sick a lot. I have a sneaking suspicion that there was a miscalculation as to how much ethanol they were giving me, because last time I was rushed to hospital for having done something very similar (that time, completely on purpose), I remember screaming in pain as the ethanol went in my arm, but I don’t remember being drunk, nor being repeatedly and violently sick.

I had to stay in hospital for a day and a half, on constant drip, most of the time in both arms. It’s still too early to say if I have done any permanent damage to my kidneys and if so, what the extent is, all I know is that I my vision is extremely blurry and I have been sick a number of times even this morning.

I am out of hospital now, back under the care of the crisis resolution team, but as neither I, nor they, think it’s a good idea for me to be on my own just now, an assessment has been set up for later today at Drayton Park Women’s Mental Health Crisis House. As regular readers will know, I have stayed there in times of acute crisis before, and have found it helpful in turning a negative trend, so I really hope that following the assessment they will offer me a place.

Sorry for making this a somewhat long-winded entry, but I think I just really needed to get it all out.
I think I am still a very long way away from truly absorbing how close I got to dying, and writing is often the best way for me to process things.

Do be kinder to your Selves than I have been to my Self.

Much love,

xx

PS. If you are one of my many wonderful friends who received my drunken text and who tried to get in touch with me later, but couldn’t get through and didn’t hear from me: something went wrong with my mobile and I could only send texts, not receive them, and incoming calls only worked sporadically. So, please don’t think I was ignoring you, I simply didn’t get your messages and consequently didn’t know to respond to them.

For some reason this song is playing in my mind. (Although the title of this post is actually from another Heather Nova song).

Nuts, Allergies & A New Perspective – An Anaphylactic Adventure

20130413-231923.jpg

Allergies. Always a fun thing, and something which I have lived with all my life. I mean I am allergic to pretty much everything: apart from having bad asthma and being lactose intolerant I am also allergic to tree pollen, grass pollen, dust mites, strawberries, kiwis, pineapple, cats, dogs, horses, rabbits etc etc…..and NUTS.

Up until fairly recently I’ve always been pretty ‘lax about it all. I mean, sure, it’s annoying having to chug down antihistamines by the bucket load all year round, and being all itchy and stuff is not much fun, but all in all I have been pretty unconcerned about it. In spite of having been rushed to hospital a number of times, I’ve just never really taken any of my allergies particularly seriously, never thought of them as something potentially life-threatening. That is until a little while ago, when, having inadvertently eaten something which contained nuts at a seder meal, I went into anaphylaxis.

It was a delayed reaction, so I was already on the bus on the way home, when it struck, and when it did, boy did it strike hard and fast. Even though I could instantly feel that this was very different to an ordinary reaction or to an asthma attack, I of course got my inhaler out and started puffing away. Only it wasn’t helping. At all. And this is when I got really scared. My tongue was swelling up and my throat was closing, and I really didn’t know what to do. Thankfully the guy who was sitting next to me [who didn’t know me at all] must have also realised that something was very seriously wrong, because – without even asking me if I needed help – he got his phone out and called 999 while at the same time [incredibly impressively] had the presence of mind to call out to the driver to stop the bus so he could tell the emergency service where we were. Within only a few minutes the paramedics arrived [one of the definite advantages of living in a big city], gave me a shot of adrenaline, transferred me to the ambulance, hooked me up to an IV drip and took me to the hospital. They gave me another shot of adrenaline and added some sort of steroid – I think – to the drip. To be honest, even though they told me exactly what they were doing, I wasn’t really with it enough to properly take it in. All I know is that by the time I got to the hospital I was breathing fine, and so as soon as the doc came to see me I was like “Can I go now?”

Not knowing all that much about anaphylaxis I figured that all was fine and well; the adventure was over, I was exhausted and just wanted to get home and to bed. But the doctor insisted on me hanging around. By the time I finally got discharged it was just gone 2 a.m. Had I known at the time about the high risk of anaphylactic relapse once the adrenaline stops working, I probably would not have badgered the doc to discharge me ASAP.

I was clearly in shock, because while waiting for the doctor to agree to discharge me I updated my Facebook status with a comment about being at A&E of Hospital X, when in fact, it later turned out I was actually at Hospital Y. Just as well that I turned down my friends’ very kind offers of coming out to see me, ‘cause I would have sent them to the wrong hospital.

The day after, I was still pretty blasé about the whole thing, joking about it with some friends I was meeting up with. Even their telling me off for not ringing them had much of an effect. It wasn’t until later that evening that it finally hit home: I could have died. In fact, had the stranger on the bus not acted as quickly as he did, I most likely would have.

As a consequence I have now been to see my GP and have been issued with an EpiPen and strict instructions to never ever take any risks with nuts. I have trained friends and house mates alike on how to administer the injection, should I be unable to do so myself, and I read food labels religiously.

This experience really has jolted me into action, into taking my allergies seriously. And it has also highlighted something quite important: that although I in an odd way feel almost OK with the idea of suicide, should life get me to that point, I would not want to die without feeling that I was ready for it.

I’ve spent a number of sessions with A. talking about this. About the difference between choosing to die and just dying. I know it’s a bit of an odd concept, but in many ways it makes sense. It’s not the dying I’m necessarily afraid of, it’s the not being ready, the fear of not being given the chance to say goodbye to those I love.

This, by the way, should not be interpreted as me saying that I am going to kill myself tomorrow, or even the day after that; it’s just a way for me to explain why, suddenly, I feel almost paranoid about eating things. It’s that unpredictability factor, the inability to control things. I can check and double-check food labels, but there are no guarantees. And it really scares me.

So, from now on, my EpiPen and I are joint at the hip.

xx

PS. Why oh why is word check telling me I mean ‘profylaxis’ every time I type anaphylaxis..?

Being Unwell And Feeling Cared For

Cure For The Ill

Cure For The Ill

I’ve been unwell. Still am, actually. Pneumonia. It’s a bit of a long-winded story, but in short it involves leaving a psychotherapy session early for the first time ever, thinking I was better when I wasn’t, and ultimately on Friday having to go see the doc urgently.

I had just left a session, and on the train home I suddenly had this terrible pain in my chest. And it was a pain I had felt before; two years ago I had a pneumonia, and this was what it felt like.

Anyway, once I got to the doctor’s, she had a good listen to my chest, took my medical history and told me she felt confident that what I had the previous week was more than likely a flu virus, but that I had milder symptoms than most, since I’d had the flu jab, and that despite this my immune system was compromised enough for me to develop a pneumonia. [Ironically, the reason I have the jab every year in the first place is so as to make sure I don’t come down with secondary complications, such as this..] Since I have a history of pneumonia, starting in exactly the same way [top right lobe a week after having had another illness] and because my asthma was kicking off like crazy, she decided that she’d rather start me on antibiotics straight away, than wait for test results to come through.

So, home I went, antibiotics in hand. Crashed into bed, and this is where I’ve been stuck up until just now. I have to say, antibiotics are a wonderful thing once they kick in. You really do feel so much better, very quickly. Of course there was always a chance that the pneumonia I had was viral rather than bacterial, in which case the antibiotics would have done nothing for me, but ‘thankfully’ it turns out that it must have been bacterial.

While in bed I have been thinking about being unwell. It’s something I have a fair amount of experience with. You see, I have a really poor immune system, and so whenever something’s going ‘round, I tend to catch it. I mean, I had swine flu long before it became fashionable. But, also – as I have mentioned in previous posts – I am prone to what I call psychosomatic fevers. Other people get upset tummies when they are stressed out; I get a temperature. And this is what’s been on my mind, these last few days; the relationship between having a genuinely poor immune system and getting psychosomatic illnesses.

You see, I don’t think it is entirely chance that I get ill very easily, weak immune system aside. When I was little I was always seen as someone who could look after myself, someone who was responsible and dependable and able, far beyond my years. My parents tended to assume I’d be OK on my own, and mostly I was. I’m sure it was sometimes hard for my parents, this fierce independence I had; not so easy parenting a child like that. But, at the same time, they were very busy people; three other kids, one of whom really rinsed them clean of any energy they may have had. So, as confusing as it may have been for them, I’m guessing it was also something of a relief that I didn’t seem to need much looking after, that in fact, I was perfectly able to look after myself as well as anyone else.

But, when I was unwell, it was almost as if my parents’ parenting instincts suddenly kicked in, as if this was the kind of parenting they could understand, could relate to. After all, they are both trained in healthcare professions. This was something they knew what to do with. And so, as a consequence, when I was unwell, those were times when I truly felt like a child, like they were my parents and I was in their care.

At all other times I always felt equal to my parents. I always felt like I was an adult, just like them. And to a large degree, I think that’s how they and other adults around me saw me, too. But when I was sick, well, I could allow myself to be the child I really was.

So, is it so strange that I am prone to getting ill? Even now, as an adult, when I am ill, both of my parents will call me, will want to know how I am, will maybe even worry a little. This in contrast to other times, when I am nearly always the one to call them, nearly always the one to ask what’s going on for them.

Of course, something like pneumonia is a very real illness, it’s not psychosomatic, not imagined, not exaggerated, but in the midst of feeling so terribly poorly, I also do feel cared for, in that very special way.
Just like I did back then.

Psychology..
It’s interesting stuff.

xx

How I’ve kept myself busy. The Square-1 cube puzzle. It’s a fair challenge, getting it back into a cube shape, and then getting all the colours right.

Square-1

Square-1

Flashbacks, Rubik’s Cube & Replacement Therapy

Had a couple of pretty good days this week. A blessed change, let me tell you. Even managed to go into town one day to do a bit of shopping. Can’t even remember the last time I did that. Didn’t stay out for a particularly long time, only a bit over an hour, but it was still good.

I’m flying out to Sweden in a couple of days time. I’m a bit nervous about it, the actual flight. I really hope it will be a good day of fewer flashbacks. That said, I have come up with something that does help me cope with them when I’m out and about; repeatedly solving the Rubik’s cube.

I kind of discovered it by accident. The Rubik’s cube had until January of this year been one of those puzzles I had never been able to solve, but always felt I should be able to solve. Then in late December I came across a video of Justin Bieber solving it. In about a minute and a half. Justin. Bieber. That really was the drop for me. I mean, seriously, if Justin Bieber could do it, then surely so could I? Right? So I set about figuring out how to do it. In fact, I even set myself a goal of being able to master the cube in less than 2 minutes, by the time this break in therapy is over.

Took me four hours of straight and stubborn trial and error before I finally cracked it the very first time. After that it took me more than ten minutes to do it, start to finish, so I carried on working at it. Slowly I got faster. I learned a few shortcuts and solve-time went down even further. And still I kept at it. Until I felt confident I could out-cube young master Bieber any time of the day. I’m now down to a semi-respectable personal best of 51 seconds. [I say semi-respectable, but of course I'm nowhere near the current world record, set by Feliks Zemdegs, at 5.66 seconds] (Ed.: New world record set by Mats Valk at 5.55 seconds in March 2013).

In the process of doing this, I realised that I had been having significantly fewer flashbacks, and that those that I did have, were much shorter, because my brain was already kind of half-way out of them, focusing on solving the Rubik’s cube.

So, in the last several months, I’ve brought my cube with me pretty much everywhere, and it really does make things easier. Up until I discovered this I would usually just stay in, because the things I needed to do to come out of a flashback were things that were either self-soothing grounding techniques, which – while very effective and calming – look very odd from the outside, if you don’t know what I’m doing – or they were things that could be done fairly discretely, but were down-right unpleasant for me [like using smelling salts or sharply snapping a rubber band against my wrist].

Yes, I look like the biggest geek ever sitting on a bus or train solving my cube over and over, but at least it is something that both works and isn’t nasty. Also, you’d be surprised at how many people strike up conversations with you, when they see what you’re doing. It’s such an instantly recognisable and iconic toy, most people have something to say about it.

Anyway, I’m hoping that this little trick of mine will make the flight to Sweden a bit less difficult. My sister and nephew will be meeting me at the airport, so once I land, I should be OK.

I’m staying with my sister for a week, and my other sister is also coming over, so I’m really excited about this trip. I’ve not seen them since my birthday last year. Also, I am hoping that spending time with my sisters will help me out of this pretty serious dip I’ve found myself in.

I’m also going to stay at my father’s for a couple of days. Feel a bit nervous about that. I’ve not seen him in about two years. We do keep in touch through occasional phone calls, but I’ve not visited him in the last couple of years. I’m hoping seeing him will be OK. I think going to visit him is a lot less emotionally charged than going to see my mother, who still lives in the house I grew up in, where there are reminders of the abuse I experienced all over the place. My father’s place is very different, in that respect. At the same time, of course it’s not just the place that is the problem with going home; it’s also the inter-personal conflicts this family trauma has caused that I have to deal with. And that, of course, is the same regardless of where I see my family. So, we’ll have to wait and see how it goes.

Really missing therapy at the moment. Actually not just therapy, but A. It’s hard trying to find a good balance; to not switch all emotions off in order to protect myself, and at the same time not allowing myself to go too deep into my feelings and risk getting stuck and acting out. So, a therapy session or fifty would be pretty darn dandy right about now.

I’ve had about a million people asking if there isn’t anyone else I could see while A. is on maternity leave. The truth is, that if I really wanted to, of course I could find someone to see short term. In fact, I considered seeing our newly appointed social worker at shul, for a while. But, the thing is – I do have other people to talk to. I have my sisters, my friends, even the Samaritans. So, it’s not just talking I need. It’s something else, too. It’s that special space that therapy creates, and most importantly, it’s the therapeutic relationship I have formed with A. over the last three years. [Three years today, I just realised – Happy anniversary us!] It’s not something that can be easily emulated. And I think that, as hard-going as it is – not having therapy, not seeing A. – it would frustrate me to no end, trying to create something similar to what I get from therapy. Looking for something different feels much more productive.

Anyway, it’s getting late.

Thanks for staying up with me.

All the very best,

xx

For more posts tagged Rubik’s Cube, including one using the Rubik’s Cube to talk about identity, click here.

My Life Today

My Life Today

When You Have No Voice – Making A Decision To Communicate

It’s been a long time, I know, but I’ll try to put you all back in the picture, as I know you will have all been eagerly awaiting my next update. [What? No?]

In the last few weeks I have been dealing with one of those much dreaded periods of flashbacks, and things have often felt completely and utterly hopeless. The flashbacks have by no means gone, but there have been a few days every once in a while when there have been fewer, and I’ve been able to find at least a little breathing space in between. When things are bad, that’s the time to focus on small blessings.

At the beginning of last week I had to go into hospital for a whole battery of tests and examinations. Part of these was a gynaecological exam, which for me is essentially an equivalent to psychological torture through physical means. I always try to prepare whoever is doing the exam by explaining that I come from a background of having been sexually abused as a child, and that these exams are pretty much garanteed to trigger off flashbacks; in short that they may need to brace themselves for my emotional response. They then usually say something along the lines of “Don’t worry, darling, I’ve seen it all before”, which is of course very kind and much appreciated, but it generally tends to become apparent that this is not really the case. When they’re faced with the sobbing heap these exams turn me into, it’s often clear that I react worse than most people they’ve examined. This then spirals into this odd cycle of them feeling sorry for me, and me feeling sorry for them having to carry out the exam on me..

So, not nice at all.

This particular nurse was absolutely fantastic, though, I have to say. It was very obvious that she was affected by my reaction to what she was doing, but because she was very open about that, I found that somehow reassuring and it in many ways it helped bring me out of the flashbacks and back into the here and now where we both were.

Concurrent with the flashbacks and general depression I have this week come down with some seriously nasty bug. This bug, by the way, is completely unrelated to the hospital thing, unless I have really lucked out and managed to contract MRSA while I was there..

At first I thought it was just hay fever, as this is the season when I usually have to stay indoors with my inhaler close to hand at all times. Had a very painful throat – not sore – painful, something I don’t usually get with my hay fever, but initially I just assumed that my body had decided to take my allergies to the next level. As it turns out this wasn’t it. Came down with a 39C temperature [that's 102F, if you're so inclined] in the middle of the week, and it’s been going ever since. So, what with the painful throat and the fever I’ve essentially had to be on paracetamol non-stop. It’s not great, Ibuprofen tends to be more effective, but for various reasons I am currently banned from taking that particular pain reliever, so there you go.

Feeling miserable on all levels is not a great place to exist and things have been unbelievably difficult. I know my last entry was pretty dire, and from there I suppose you could say things went south. Having no therapy has been really challenging, it feels like years until A. returns from maternity leave. But, I am still around, still fighting – even if the evidence of this has not been posted on my blog.

This Friday I had been invited to two sedarim – the special meal eaten by Jews on the first night of Pesach, but instead I spent the evening in bed, fighting flashbacks and this blasted bug. Last night I had booked a place at the communal 2nd night seder at my shul together with many of my friends. I did make it there, in fact even went for a pre-seder drink with one of my friends, but didn’t make it through the meal. Was feeling incredibly rough and then began having flashbacks, and I had to make the decision that I needed to make sure I could make it home safely before things got even worse. Hated having to leave, but as it turns out it was probably a wise choice.

This morning I woke up having absolutely no voice.

I have lost my voice in the past, but never quite this completely, and it’s kind of an interesting thing; the second you discover you have no voice [in my case when I began recording a voice message for my sister] you realise how much you rely on it.

I don’t usually use my phone or computer on Shabbat or during religious festivals. This is not so much because it’s biblically and/or rabbinically decreed that one should not use iPads or Blackberrys during festivals, as much as – being a modern reform Jew – I’ve made the informed decision that for me stepping away from all my techie gadgets and disconnecting for a bit makes those times different to other times. I am normally contactable at any given moment, day or night, be it through texts, Facebook updates or tweets, and so I like to make Shabbat and festivals different and special to other days, through unplugging in this way. Admittedly, most of my friends think this is completely bonkers, but hey, it’s just the way I roll.

However, since that accidental-on-purpose over-dose the other week, I decided that it’s actually a lot more life-embracing to temporarily break that self-imposed rule than to keep it. Which is why you are seeing this update today, during a week I would normally steer clear of modern technology.

To help me through particularly rough patches over these past few weeks I have often sought support over the telephone from my sisters, my friends and the Samaritans, regardless of whether or not this has been on Shabbat. Being able to talk about what’s going on, both physically and psychologically, makes me feel less like I’m on my own in this.

So, as you can imagine, waking up this morning, with no voice at all, has come as a bit of a shock, and has left me feeling very vulnerable. Which is why I’m sitting here now, writing this..

I guess that even when you haven’t got an audible voice, you can still find ways of making yourself heard.

Do be kind to yourselves,

xx

Because Tomorrow Might Be Good For Something

*

“..I’m not crazy, I’m just a little unwell
I know, right now you can’t tell
But stay awhile and maybe then you’ll see
A different side of me..”

*

I guess there are no easy ways to talk or write about this, but as this is supposed to be an honesty-focused blog I’ll just tell it to you straight: last week I accidentally on purpose overdosed on my medication. It really wasn’t a bid to end my life, at least I don’t think it was [although I accept that others may disagree]; I didn’t even take all the tablets I had, but it was still a significant enough dose to potentially do some damage. I know my meds pretty well, and I would like to think that I know what would and wouldn’t kill me, but, the truth is – of course – that there is no way to know for sure just how much a of a medication would be lethal for a specific individual; what’s safe for one person may well be fatal for another. In some weird and rather irrational way, it was more like I was testing if it would be possible to swallow enough tablets in one sitting to get to a lethal dose. I think that was my confused logic, anyway, [which, obviously, isn't logic at all].

I did frighteningly well in terms of establishing that it would indeed be possible, had I wanted to take more pills than I did. But, the second I had swallowed the first lot I instantly regretted it, and I decided I should go to A&E, since the meds I’m on [Amitriptyline] are known to be very toxic. In fact, the highest therapeutic dose is not that far off a dose that would be classified as toxic, and that is the precise reason why Amitriptyline is only prescribed as a last resort, when all other types of anti-depressants have failed.

Again, entirely irrationally, I decided that rather than calling for an ambulance I would get on a night bus to my local A&E, so I got myself out, started walking to the bus stop and only just missed the bus, so I carried on walking in the general direction of the hospital. After a while I began to get really unsteady on my feet, but was still clear enough to realise that passing out on the streets of London on a Saturday night would not be a great idea, especially with a lot of drunk people out and about. So I went back home, got on my bed and blacked out before I could call for an ambulance.

When I woke up it was all dark, so I thought that it was still night, but when I looked at the time on my mobile I realised that it was in fact the next evening, and I’d been out cold for nearly 24 hours and had missed several calls and texts from worried friends. This really freaked me out, since I normally wake from even the quietest of noises.

That evening I again attempted to get to A&E, but was simply still too wobbly and I had to give up and go home again. On Thursday I had an appointment with my GP, and I told her honestly what I had done, and that since I don’t even really know why I did it, or at least, the logic in the moment really wasn’t logic at all, I really needed some extra support. She heard me and then asked whether I wanted to call the mental health crisis resolution team myself, or if I wanted her to do it. I opted for the latter, because I know I would most likely have gone home and talked myself out of ringing them.

So, at the moment I am seeing the crisis team every other day. I’m not suicidal, at least not on a conscious level, but I also think that having some extra support over the next few days is a good idea, wherever that support comes from.

The crisis team, being tied to the NHS, have, as they always do, questioned both my therapy and my therapist on the grounds that they are not NHS and must therefore automatically be harmful to me.

That really makes me angry, since I am a big believer in psychotherapy in general, and in my therapy in particular. For me, psychotherapy is the most appropriate way of disentangling my thoughts and emotions, and to ultimately get away from the intrusive flashbacks and nightmares which push me to act out in this rather extreme way.

That said, what with my therapist being on maternity leave, I do feel that as much as the crisis team and I have very different ways of understanding psychotherapy and the effect it has, I am still glad to be seen by them, because it means that, should I act out again, or miss a scheduled appointment [whatever the reason] they would send the police and ambulance round to check on me, as I am in effect an out-patient and they have a duty of care. Also, they are available to talk to 24/7, should I find myself struggling with thoughts of self-harm or suicide. I can’t promise I would definitely call them if that happened – in fact – I’m fairly certain that I wouldn’t, but at least the option is there.

Hopefully things will improve soon, so I can start looking forward rather than backward, because, who knows..

;

“..tomorrow might be good for something..”

;

xx

;

Heading, and quotes at the beginning and end of this entry are from Matchbox 20‘s track Unwell. © Rob Thomas

Long-term therapy vs. short-term crisis resolution

I’ve been thinking about how to update my blog the last few days, but I’ve not felt able to do it. Partly because all my energy has been channelled towards fighting my way out of a flashback. Again and again and again. Times a million. It really has been kind of never-ending – and the only way that has worked to give me any kind of longer break has been to either make myself black out or to cut, neither of which is particularly healthy.

To say that it’s been a difficult few weeks would be a severe understatement. It’s been pretty relentless, and at times I’ve really just wanted it all to end, because there is only so much a person can cope with. The crisis team have been quite good (well, the nurses more so than the pill pushing doctors) – but it’s also been hard to find myself back in this system. Also, I’ve felt that the crisis team has been quite critical of the therapy I’m doing with A,, and they have frequently asked me if it’s really helpful to have this kind of therapy when it’s made me have such terrible flashbacks. Also, my relationship with A. has been questioned. More than once have they asked me if I’m not a little bit too attached to my therapist. My answer throughout has been that it’s not the therapy which is causing these flashbacks, it’s a combination of going home and then returning a week before therapy resumed, in conjunction with a number of other factors.

I’ve defend both my choice of therapy and the relationship I’ve worked so hard to form with A. on numerous occasions, but it’s tricky when you’re talking to people who see medication and CBT as the cure for all ills. It’s not so easy to explain that the whole point of therapy is that you form a close relationship with your therapist, and that it allows you to look at other relationships and see how they may be played out as little echoes within the therapeutic relationship. That in my veiw CBT is a bit of a band-aid, masking deep-rooted problems, and wouldn’t be at all appropriate for the kind of issues I’m dealing with. That, yes – this is really hard work, and yes it does bring difficult things up, but that it’s my feeling that the only way for me to be able to find some sort of peace within my past is to dare look at all those difficult things and realise that I can in fact survive the pain. And that’s what the work I do with A. is all about.

Despite this difference of opinion, having the involvement of the crisis team has also been of value – I’ve felt held by the fact that I’ve been seeing them on the weekends, when I don’t see A., and that they’re available to talk to on the telephone 24/7. It does help. But, that does in no way mean that I’m any less committed to the work I’m doing with A. I see it more as a crutch between sessions – for the time being – so that I can carry on with what I do in therapy.

Following yesterday’s adventures at A&E when I had my cuts stitched and SteriStripped – with a tetanus shot thrown in for good measure – R. from the crisis team came down to have a chat with me, and she said that she felt that my self-harming behaviour was going in the wrong direction, that it was escalating rather than subsiding, and that she felt I needed more support than what the crisis team can offer, and she suggested she make a referral to Drayton Park Women’s Crisis Centre.

I’ve stayed there in the past – years ago – and it has been helpful, so I agreed to R. making the referral. I think Drayton Park could be a safe option while I’m in the middle of this crisis. To me it seems like a happy medium – I’ll still be able to see A., but rather than going home to a lonely room battling flashbacks and urges to self-harm, I’d be going back to Drayton Park, where I’d be able to talk to someone about my urges to self-harm. Also, I know that they will be a lot more encouraging in terms of doing the type of work I do with A. han the crisis team has been.
Fair enough, I’ve never actually been at Drayton Park when I’ve been in therapy, but I have several friends who’ve stayed there and have felt that the Drayton Park staff have been very much in favour of them carrying on seeing their therapists while they’re staying at Drayton Park. Essentially what they say is that your therapist is your long-term support and who will help you with long-term goals, and Drayton Park is a place to feel safe while being in the middle of a crisis. It’s a short-term add-on support system, not a replacement for your long-term aims and goals.

Anyway, I’m meeting with one of the workers at Drayton Park tomorrow for an assessment, and it still remains to be seen if they’ll deem it appropriate to offer me a place for the week.

Think it’s time to hit the hay now – hopefully I’ll be able to sleep a little more than I have been in the last few nights..

Be kind to yourselves.

xx

Little S At Six Months

Little S At Six Months

Survival – Knowing When You Need Help

Things aren’t going so well.
Downward spiral at breakneck speed, I feel frightened at how quickly I’ve gone from doing really well to finding myself stuck in a pattern of inward turned anger and self-harm. A few weeks and I’ve managed to undo all the hard work I’ve put in these last four years.

Realising that I’ve lost control of things I have been forced to accept that I need someone to help me, and so on Monday I called my GP to make an appointment. Couldn’t get one until Wednesday, and let me tell you, that felt like a very long way away.

These last few days have really have been rollercoaster like, oscillating between trying to stem flashbacks by using cords and scalpels and later on feeling very very angry with myself for not having been able to stop myself from going back to this very destructive behaviour. And it’s becoming increasingly erratic. This morning I woke up and immediately reached for a fresh scalpel to punish myself for having, the previous night, used a cord coiled around my neck to make myself pass out. – There’s no logic to it, and I can see that. Yet, I don’t seem able to stop myself from acting out in this way.

I’ve been trying to do things in the last few days to try to prove to myself that I’m not quite such a bad person as I sometimes think I am. To show myself that I’m not a waste of space, that I am of some sort of value to the community. But it’s hard to hold on to those thoughts when it has to come through external actions rather than from some internal place..

Saw my GP this morning. I say my GP, but really, I saw a GP. I saw Dr H., a newbie doctor, in her own words. This turned out to be a pretty good thing; she listened to me and seemed to really take in what I was telling her, in contrast to some GPs who’ll whack out the ever-so-patronising “How Depressed Are You?” multiple choice questionnaire at the earliest possible opportunity in a bid to avoid having to actually listen to the patient. Given this opportunity to be heard I tried to be as honest as I could with Dr H. It’s hard, when you’re a bit of a people-pleaser like me, and you don’t want to make the other person feel bad, but I think I did OK.

Dr H. made the decision that she didn’t just want to start me on some meds, but that I needed to be seen by the mental health crisis team. She asked me to wait in the waiting room while she sorted it all out, as she didn’t want me to leave the clinic before she knew for sure that I’d definitely be seen by the crisis team. A reassuring touch, I have to say. I’ve certainly come across doctors who say they’re going to make a referral and send you off with a “Don’t call us, we’ll call you” style parting phrase.

As it turned out the crisis team wanted to see me at noon, so I essentially ended up going straight from the GP practice to the Highgate Mental Health Hospital. Felt quite anxious about going there, as I was still experiencing flashbacks and I was worried that I’d become too confused and disoriented on my way there. Also, I didn’t know what to expect. It’s been several years since I’ve been in touch with any form of NHS run mental health service. A lot of my work has been aimed at getting away from this system.

Then I was thinking of the advice I would give – and have given – friends who have found themselves struggling in the way I am right now: accept any help you can get, whatever that may be. This is not a time for pride, it’s a time for survival.

Talking to two members of the crisis team I did feel a lot better. They reassured me that their aim is to support people struggling with self-harm and suicidal ideation in their homes, rather than pushing people into wards, which may not at all be the best for a person. They did – of course – make it clear that if they felt I became more destructive and posed a serious danger to myself they would have to put me on a section order, but that their aim was to find alternative ways of supporting me. They made the decision – based on my previous history – that they’ll want to see me every day for now, and also asked if I would give them permission to liaise with A. regarding what would be the best way to go about things. Initially I didn’t feel comfortable with that, but in the end I decided that maybe it could be helpful to not try to keep different parts of my life separate. As I was a little unsure of A.’s number I told them I would ask A. to call them instead.

My session with A. today was quite difficult. I was just feeling so low, so defeated at finding myself back in this very dark place. I’m finding it very hard to motivate myself to not give up, keep falling into thinking that no matter how hard I try, no matter how hard I work, I will always come crashing down..

A. said a few things that made me feel a bit better, made me feel like I’m not entirely on my own. But it’s still very very hard. She also added an extra session for me this week – first thing tomorrow morning – which felt comforting. Also I have been given the number for the crisis team, which is a 24 hour care service, so I can call and talk to someone on the crisis team at any time between seeing them in person.

I hope this will help stop me falling any further. Because last time I felt the way I feel right now I drank half a litre of anti-freeze and ended up in ICU..

So, if you have any to spare, thoughts and prayers are much appreciated.

xx