A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Monday, 30 May 2011


Two of my friends got married on Saturday.  It was a lovely wedding and C, the bride, looked beautiful.  The occasion, though, reminded me of a conversation I had with my mother a few weeks ago.  It was a very surreal conversation, and one that you should probably never have with your mother.

I'll be graduating with my under graduate degree this September (I just sent off my last essay today!) and I'm having a party to celebrate.  My mum suggested the party when I was in hospital sometime last year or the year before, and it was just before my most recent admission that I started to organise the party and send out invitations.

Mum and J are very kindly paying for most of the party, and it was while we were discussing some of the costs that this surreal conversation took place, beginning with her saying, 'Of course, if you decide to get married next year then we'll have to have a re-think about finances.'

????????  'Yeeees, but I need a man, and a relationship with a man, before getting married becomes a possibility.'

'Hmmm.  Have you thought about maybe going to Thailand and getting a Thai bride?'

??????????!!!!!!!!!!!!!!!!!!???????????????!!!!!!!!!! 'No.  I can honestly say that I haven't.  And Mum, I'm not gay.  You do know that, don't you?'

'Yes, it's just ... Well, I thought with your liberal views, and all that...'

?????!!!!!!!????????  'Er.  Um.  Right.  I see.'  NO, I DON'T!!! What liberal views in particular????  'Well, um, I'm not gay, and I'm not going to Thailand to get a wife.'

'Oh.  Okay ... So you won't be getting married next year?'

'No, I think that's very unlikely.  Lovely as it would be to be getting married, I do want to marry a man, and I want it to be a man I love.'

I have no idea where that idea of hers came from, and I have to say that I felt as though I ought to be apologising for being straight.  I'm also rather perplexed as to why she seemed to think I might want a bride!  And a Thai bride!  This is the woman who was anxious about me being well enough to go to North Yorkshire, so I have no idea where this notion of me jetting off to Thailand came from.  And a bride from Thailand!!!   The conversation seems so wrong in so many ways.

Completely surreal.  Totally bizarre.

Saturday, 28 May 2011

Black Blood

Following on from my post Reflections I wanted to try to explain a little more about self harm (si), but I also wanted to try to take you into the experience, into the mind-set, although of course I can only take you into my own experience, not that of anyone else who has/does si.  To this end I've written 'Black Blood.'

It was difficult for many reasons to write 'Black Blood', not least because I had to take myself back to that deep, dark, painful time of depression and self-hatred - a place I remember so vividly, even though I don't live there now.  Perhaps the difficulties are worth it if they help just one person who reads this to understand a little more about si and the confusing experience it is with it's dreadful emotional pain and the conflicts that battle inside...

Black Blood

Wrapped up in the dark, trapped in the night and bound by a constricting sheath. I need to breathe. I need to break out of my prison. I need to know that I’m still alive. I am completely numb, yet I am also entirely filled with pain – the pain of my soul being murdered; murdered by depression. I need to know that I have some life inside me and I need to feel something other than the intangible death of my spirit. I need to break free from myself ... unleash myself from the binding of my skin ... cut myself free.

My mind whirls into an almost drunken calm. I know I will do this. I know I don’t want to, I know that I need to, I know I do want to, and I feel the jittery excitement of expectation.

I finger the flimsy blade gently, caressing it with both love and hatred. I have freed it from its plastic casing and now it is my saviour and my downfall. It has potential to pacify the monstrous depression and save me from certain death – suicide – but it could equally well kill me entirely ... if I choose; if it chooses ... if it catches the wrong thing; the right thing. Which will it be tonight?

The lamplight isolates me in the darkness of the night – a spotlight on my anticipated activity – and then momentarily glints back at me from the grey metal, like a single eye winking encouragement: ‘Come on. You know you need me.’ Evil. Enticing. Exciting. Energising.

The coil inside me frets.

The tension threatens to strangle me and I tighten my grip; fingers turning white, ghostly in the halo of light from beside me, confirming something of my deadness. I look down at the pale, clean canvas of my arm and I hate it. I see the blue-black blood in the surface veins, assisting the transport of the poison that is in it – undetectable by any analysis, but there nonetheless, feeding the beast of depression. I need it out of me.

The coil winds further.

With an uncertain tenderness I place the cold slither of razor blade onto my arm and let it rest on my skin. The sharp edge tantalises the nerve endings, making them prickle with anticipation. They dread it. They adore it. There is an indentation, but the weapon does not yet break through the suffocating membrane. I am waiting.

I am waiting.

The night envelopes me.

I am waiting.

I am alone in the dark; alone with depression; alone with an all-consuming detestation of myself. Then with a fury that explodes like a silent volcano I press down hard, I pull back my hand, and I swipe at my skin. I rip into it like a savage battling through the undergrowth hunting its prey. I will not give up the quest. Layer after layer, through taut, white skin; through yellow jelly fat; through strings of veins; past tense cords of tendons, and I feel nothing. I continue my search – there must be life hidden somewhere in the dark corners of my being. Somewhere. I slash my way through the jungle of myself until at last I see the purity of bone – a white angel that smiles at me through the gape in my arm. It has caught me before I have killed myself. It has saved me from myself. It weeps blood and the tears form rivers down my arm and onto the tissues I’d arranged as a comfortable pillow for my limb before the massacre had begun.

And then I feel the pain.

It is a shock.

It is a relief.

Now I cry from my eyes as well as my arm, both in silence, both in the dark. Full of hatred. Full of calm. I am alive. I do exist – the physical pain tells me so.

I watch the blood-well in my arm. It fills and it spills, and what has been poisonous is now pure – the black blood having turned red as soon as it hit the air. My body has taken a breath through my grinning skin and I am relaxing. Calm is descending. The hunt is over and the beast is slain. Red rivers show my tracks, and slowly they too begin to ease up, no longer desperately trying to escape the confines of the deathly, tight shroud that shackles me to myself. It thickens. It oozes. It creeps. It stops. It sticks to me, reminding me that although it is now free it is still a part of me. I despise it. I love it. I wipe it from me, easing it off my skin with the tear-damp tissues I’d held to my face. I mother myself and I tend to the wounds of the injured child before me – this limb that feels detached from me, yet is a part of me. I weep for it; I weep for myself; but I rejoice because I have proved that something of me still lives, even though I had to slice through the repugnant wrapping that engulfs me to find it.

I sit with the remnants of the beast strewn around me.

I come back to myself more fully.

I re-enter the world, although still in darkness.

Reality hits.

Now that I know that I exist I realise that however much motherly love I give myself I cannot repair the damage I have done. But I also cannot afford to beat myself up about having done it ... I have already done the beating. No, now what I must do is prepare another soft pillow, this time of padded bandage, in which to tenderly wrap the damaged arm with its trapped angel smiling from within. Now I must brace myself for a battering of scorn, resentment and abhorrence for my self-loathing act of destruction ... of survival ... from medics at the hospital. They will hate me as much as I hate myself, and their hatred will feed the beast, refuelling its energy and resurrecting it from its resting place.

Tuesday, 24 May 2011


I can't get into my local pharmacy.  You'd think that of all the places that'd be wheelchair accessible it'd be a chemist shop, but no, my local one has a step about 6 inches high at the door and no ramp.  It doesn't even have a door bell.  Helpfully (or not), it has one of those large push-buttons with the wheelchair symbol on so that the door opens automatically and a wheelchair user doesn't then have to negotiate holding the door open as they try to go through, but that's not an awful lot of use when you can't actually get up the step to go through the door.  It's a bit rubbish really, especially as I'm there quite frequently to get the huge prescriptions of meds that keep me alive.  When I go there I use that push-button on the outside of the shop, keeping my elbow on it so that the door doesn't then close on my face after a few seconds, and knock the letterbox until someone at the till on the other side of the shop notices me.  Either that or I ask some passing person if they can tell a member of staff that I'm there.  I will eventually be seen to, but have to wait outside while my script is being prepared, and this can take some time.  It's not so bad if the weather's good, but it's no fun at all if it's freezing cold, pouring with rain, or blowing a gale, and it also makes me feel very much like a second-class citizen.

Two and a half years ago I asked them if they had any plans to get a ramp.  They didn't, but after my enquiry they applied for planning permission.  Excellent!  Not so excellent has been the council's response.  When there was a 'trend' for ram-raiders the pharmacy put up concrete bollards in front of the large, glass frontage, and these have since caused a problem with getting planning permission for a ramp.  Goodness knows why.  Anyway, I got a bit fed up with waiting so checked the progress of the ramp planning permission on the council's website, and came up with nothing.  I couldn't see any mention anywhere of an application having been made.  Hmmm.  I contacted my local councillor to see if he could help, after all he was so helpful with getting the snow cleared for me so I could get to the doctors at the height of that awful weather in December.  He made enquiries.  He contacted the regional manager of this national pharmacy chain.  They sent an email back to him saying that they had no plans to install a ramp at this store and hadn't set aside any money to do so.  My friendly councillor pointed out that they were in breech of the Disability Discrimination Act, and low and behold they agreed to have a meeting with Mr Friendly Councillor ... only then there was a change of regional manager and the new one had to get up to speed with her new role before she could meet with Mr Friendly Councillor.

I was at the pharmacy again yesterday, sitting outside in the 60-70mph winds, when the store manager came out.  I've been hassling her intermittently about getting a ramp in the hope that she'd hassle her boss and the hassle would continue up the chain, and something somewhere seems to have worked, because yesterday she told me that they've been granted planning permission for a temporary ramp.  This is fantastic, though I do wonder what a temporary ramp is, and how temporary is temporary, and does it mean that they're just going to have a ramp for a short while and then take it away again, or are they actually going to replace the temporary ramp with a permanent one.  Whatever, it's great that I'll be able to get into the shop at last, even if it is only for a short time.  Mind you, there's no saying how long it'll take to get this temporary ramp installed.

On the window of the same store is this sign (apologies for the reflections):

It tickles me.  I know the two pieces of information on the sign aren't supposed to be linked, but the fact that they appear on the same sign, and there's a complete lack of punctuation, does make it look as though they will charge for any help they give to the disabled, elderly, or those with children ... and it does kind of fit with the attitude the regional manager has appeared to have regarding ramp access to this store.  It really does tickle me, though :o)

Saturday, 21 May 2011


I've been thinking about Nn's death, and whilst it's bound to have a significant impact on me I wonder if it's had more impact because it was suicide.  Death is a taboo subject in most of society, and suicide is even more so.  I'm going to talk about it here though, because not only has it raised itself in my life now, but it also had a significant presence in my life in the past. 

I suffered from disabling depression for many years.  I was drowning in an emotional sea of black treacle that sucked me down into its depths and so nearly suffocated the life out of me.  I spent a significant amount of time in my twenties in hospital with depression, and to be honest I didn't believe that I'd ever be free of it.  I wanted more than anything to be 'normal', to be happy, but the more I wanted these things the less achievable they seemed to become. 

I self-harmed.  Actually, I started to self-harm (si - self injure) when I was in sixth form, though I always hid it as much as I could, but as I got older and the si became worse it was impossible to hide from everyone, because it was too severe to patch up myself.  Very few people understand self harm and think of it as attention-seeking behaviour.  Perhaps it is for some, but not for me - I never wanted others to know, and I hid it as best as I could, but when the cuts wouldn't stop bleeding or were too severe and deep for me to manage I had no option but to go to A&E or my GP to get sewn up.  No, for me si was a huge mix of things.  To a certain extent it was about tantalising death - I didn't care much if I lived or died (and later I definitely wanted to die), and venturing that close to arteries, tendons, bones, ligaments, etc was almost like letting fate decide.  But ironically, si was often also about survival.  I hurt so much and so deeply in my soul.  The only thing that told me that I wasn't physically dead was the emotional pain I was in.  Oddly, I often didn't feel the physical hurt of cutting myself until sometime after I'd done it, and then it was almost a relief because it was a different kind of pain, a tangible pain, something I could see and was justifiable.  If I hadn't cut I would've imploded more entirely, I'm sure.  Contrary to the 'tantalising death' thing, si was also almost the opposite of death ... it let the edge off the agony and stopped me from killing myself ... a kind of letting off steam from the pressure cooker... 

I don't si now.  I haven't si-ed for 8 years.  The last time I cut/si-ed was 22nd April 2003, though of course I will always bear the scars.  There's nothing I can do about that, but I refuse to be ashamed of them, and whilst I hid the wounds at the time, I refuse to cover my scars for the sake of others now.  If people don't like what they see then they don't have to look, but I have to live with the scars everyday, and if I allow others to make me feel ashamed of them, then I'm allowing others to make me feel ashamed of myself.  There is a stigma to mental illness and depression, but there oughtn't be, and I won't, if at all possible, be ashamed because of the depression I've suffered from in the past, or the actions that depression led to.  Depression is horrendous enough without adding extra guilt into the mix.  So yes, I have the scars, and whilst I don't flaunt them (I'm not proud of them either - they're just a part of me), I don't hide them away unless I want to, and yes, there are some situations in which I will do that for myself, and sometimes for my mother as I know that she can sometimes find it difficult.

Self harm so nearly wasn't enough to keep me alive though, and for a long time I was intermittently suicidal.  For years, in fact.  It reached a head in 2002/2003, during which time I took several overdoses (very significant ones, far removed from any category of 'a cry for help'), and tried to hang myself.  That is where I feel a particular connection to Nn in his final act.  Unlike Nn, I was found just as everything was going black and disappearing into a haze somewhere beyond the sound of the familiar wheeze of constriction, this time from strangulation rather than asthma, but the same sound nonetheless.  Despite being in hospital with depression at the time, I hadn't expected to be found until after I'd succeeded, and I was distraught when I realised that I hadn't succeeded.  Nn was in a different physical situation from me and had no interruption, but I do know something of what he experienced in those last minutes of his life, and that has made me reflect a great deal on his death, his life, my life, my past depression, my subsequent fights for life through multiple asthma attacks, the whole complicated thing of 'life'.  It fills me with such huge sadness that Nn felt such despair that he chose to kill himself ... and I remember the despair I felt myself when I was suicidal.  I remind myself that this is remembered despair, not the feelings of today, and I remind myself of the fantastic moment of miraculous cure.

You may not have seen the list of 'Facts about me' near the bottom left of this page, but there's a fairly random list down there of snippets about me.  Third on the list is, 'at 4pm on Monday 5th May 2003, walking down one of the grimmest streets in Newcastle, I experienced a miracle.'  This was at the height of my suicidality.  My world had been the deepest, darkest shade of black imaginable for what seemed like forever.  I couldn't remember what it was like to live in a colourful world, or to feel that I was doing anything beyond existing.  I had no hope of anything ever changing.  At the time I was being desperately let down by the mental health services, who I believe were actually making my situation worse, and I was so nearly, so very nearly successful in my suicidal acts.  And then 4pm on Monday 5th May 2003 happened.  Nothing had happened to change my world; no event had taken place; nobody had said anything or done anything; no change had been made to medication; but suddenly everything changed.  I was walking down Westgate Hill in Newcastle, which several years earlier had been voted the 4th grimmest street in the country (what an accolade!), when I suddenly felt something I didn't recognise.  It worried me that I didn't recognise what I was feeling, and the worry caused me to glance up from my fixed focal point of the grey pavement just ahead of my feet.  The grim street was still shades of grey, but the grey buildings were topped with bright red tiles and looked over by an intensely blue sky.  My eyes hurt with the colour.  It was like regaining sight after years of darkness.  It was astounding, astonishing, amazing.  And that feeling, it was becoming more overwhelming.  What was it?  It was the feeling of being alive!  I wasn't just existing, and I wasn't in a monochrome world any more!  I was alive and living in technicolour!  I texted my mum.  I texted that for the first time in years I suddenly felt alive!  I have been alive ever since, never having returned to those depths of depression.  Sure there are low times, especially after near-death experiences, or other significant events, but they're different from depression - they're normal responses to difficult circumstances/situations/events, and they don't last.  Monday 5th May 2003 was my rebirthday, a miracle day.  I was a Christian before this wonderful event, for many years before the event, and I never stopped being a Christian throughout my depression, but I felt forgotten by God.  I felt as though I didn't matter, and questioned why I felt that I should matter as there were so many other, much more important things going on in the world, but it saddened me that I didn't matter even to God.  And then God showed me that He hadn't forgotten me, and that I was as important as anything else on His 'to do' list, and that He really is there even when we think He's busy with something else.  I don't think anyone ever expects a miracle to happen to them.  I certainly didn't.  I feel incredibly privaledged to have experienced a miracle, and for it to have been so completely life-changing ... life-giving.  I wish with all my heart that Nn could've had the same miraculous event occur in his life.  I am so thankful that God stuck his oar in when He did with me, saved me from myself, from my suicidality, and gave me colour and life again.  It's just over 8 years ago that it happened, but I remember it as clearly as if it happened today.  It still fills me with awe, I still get excited when I think about it, and I know that I am truly blessed.

Tuesday, 17 May 2011

Let's get positive

Okay, it's time for some positivity around here. Things have been tough for a while so it's time to spend a little while thinking about and appreciating the good things. Here goes:

+ Holidays and time away with family.
+ Baby cuddles with J, the newest member of the family who will be 12 weeks old tomorrow.
+ Nephew therapy - J, O, and D are all adorable and life-affirming.
+ The restorative qualities of the countryside.
+ Luxuriously long baths with easily controlled water temperature that's just perfect.
+ Friends. They're such special people who give so much, and are a true blessing. I am very lucky to have so many wonderful people in my life, and I thank every one of them for being the person they are.
+ A five minute break in the rain on a wet day when the sun peeps through the cloud and reminds you that the gloom will pass.
+ Cross-stitch and creativity. I love that I can be creative and relax with a little sewing. I'm working on a cross-stitch for baby J - a Mr Men height chart - and I did a little this evening before coming to bed.
+ The ability to consider various perspectives of an argument. I mention this in relation to my studies at the moment, rather than any actual argument. I'm slowly getting round to thinking about the final essay for my OU course, and while we were watching Bhaji on the Beach this evening (a set 'text' for my course) I was having interesting thoughts about it in relation to the essay.
+ Interesting people around me with whom I can have interesting conversations on a wide variety of subjects.
+ Meds that finally seem to be making a bit of an impact on the fluid retention :o) It hasn't gone yet, but progress has been made and I'm slowly deflating :oD
+ Blackbirds. I love their song. This year there's been one for the first time (or the first time that I've noticed) around my flat. There's also one that comes and sings in the courtyard outside the room I usually have in Ward 29, and it didn't let me down during this latest admission. I heard a cheery little blackbird this evening too as I went for a five minute wander with O and D before their bedtime.
+ Dongles and mobile broadband! It is by the power of such things that I come to you now, and through which I'm able to keep up with my online friends even while I'm away or when I'm in hospital.
+ Werther's Originals. A sweet that I'm not allergic to, and that I particularly enjoy, although I usually only have them when I'm in hospital as I seem to forget about them the rest of the time.
+ Good quality sleep. There's nothing quite like a restful night.

Speaking of sleep, I think it's about time that I got on with getting some. I feel better for having done my list of positive things though :o) It can really help to concentrate on the good things sometimes, and to remind oneself of what they are and how lucky one is to have them.

What are the good things in your life right now?

Saturday, 14 May 2011

Home and away

I made it home from hospital! I'm not 100% well, I'm still having some renal difficulties, and I'm still terribly swollen with water retention, but I'm okay enough to be out of hospital. Hospitals are great places to pick up infections too, so the sooner one can escape the better, especially if your immune system is suppressed, as mine is from the huge doses of long-term steroids. I'm already a chronic carrier of MRSA, and I don't need anything else to take advantage of my vulnerability. Besides which, I was getting miserable just from being in hospital for so long (18 days I think) and with the various complications that had already occurred. Being MRSA positive is great for getting you your own room (you have to be isolated from other patients) and therefore some privacy, but spending 18 days mostly on your own with life-threatening things happening to you, and on the back of your step-brother's suicide, is not always the best thing for one's mental health. Yes, in that respect I was more than ready to come home, and as I've said before, there's a certain amount of physical getting better that I believe can only happen once you get home anyway. So I escaped yesterday (Friday) evening around 5pm I think it was, and was sat on the sofa with Zach purring all over me 15 minutes later >^..^< I did a huge amount of nothing last night, although W popped by to see how I was doing, and I began to think about coming away.

Last year we had a family holiday in North Yorkshire over my mum's birthday - a gathering of the clans consisting of Mum and J (step-dad); my brother M, his wife, N, and their boys, O and D; my brother C and his wife S; and me. We all had such a lovely time at the cottages we stayed at that we decided to do the same thing again this year, albeit a few weeks later than last year's trip, and this time with the addition of C's and S's 12 week old baby, J. It was planned for this week, and still happening whether or not I'd be able to make it because of being in hospital. It was looking unlikely that I'd be able to go and I think the prospect of missing out was perhaps adding to some of my miserable feelings of the past few days. I have made it though! I am currently in a cottage called 'Badger' in a place not very far from Thirsk in North Yorkshire. My nephews O and D are asleep in the room next to me, although they took a lot of settling tonight, and only eventually went off to sleep after many times of being put back to bed and the last thing O (4) was heard to have to said to D (2 1/2) was, 'That's it, D. I don't think I can do any more rampaging tonight.' :oD Mum and J are asleep in the room across the landing. The rest of the clan are over in the other cottage we've rented here, 'Fox'.

I had a slow morning this morning, gently gathering things together; sorting out meds; stroking Zach; being purred on by Zach; being eaten by Zach (he wasn't at all happy to see me packing a bag so soon after such a long disappearance, and he was definitely letting me know of his disgruntledness); going to the post office to collect a parcel I'd missed being delivered whilst in hospital; making bread to bring away; sorting out some OU stuff; and filling the car with petrol. All very relaxed. All quite tiring given that I only got out of hospital yesterday evening and didn't sleep brilliantly as I never do on my first night out of hospital. I then pootled off southwards at about 4pm, arriving 66 miles away from home about an hour and a half later. The drive was easy with very little traffic, which reduced the number of crazy drivers to negligable. I have to say that I was quite exhausted by the time I got here, and I haven't been out of the cottage since landing, but I'm hoping to be able to relax, unwind, destress, recuperate, heal, and renew my spirit with this family time in the countryside. I will have to do some study while I'm here as I have the final essay for my undergraduate degree with the OU to do. It's supposed to be in by 27th May. I've applied for an extension because of my hospital admission, but after my experience of being refused last year despite being very ill I don't hold out much hope. Anyway, it'd be good to get the essay (ECA - End of Course Assessment) done and sent on time if at all possible, even if it's not going to be my best work. I have to keep reminding myself that I only need to pass this course, and that the level of pass doesn't affect the classification of degree I'm going to get as I've done things backwards (as is my way) and I'm finishing my degree with the foundation course I should've started with, and foundation courses don't contribute to degree classification. Of course it'd be lovely to get a Distinction if I could (and my overall course assessment scores fall well into this bracket), but it doesn't affect anything if I don't, so I actually only need to get 40% in the ECA to pass it, rather than 85% for a Distinction. So yes, I have to do some study while I'm here, but I also need to let myself be restored in body, mind, and spirit. The past few weeks have been very difficult. Here's hoping I can go home on Thursday feeling more like myself.

Tuesday, 10 May 2011

What next?

I feel rubbish and I'm afraid this is likely to be a bit of a moan.

I guess I'll start with the good bit, which is that my lungs are improving and I'm now off the oxygen. My oxygen sats are a little on the low side, but that's fairly normal for me when I first come off the O2 and my body gets used to doing without the extra. It's fine. They'll sort themselves out.

All is not well though, and the bladder and kidney spasms I was experiencing progressed into renal colic with excrutiating pain that ultimately caused me to pass out and end up in a very distressed state. Yesterday was a day of total agony with the renal colic, and today hasn't been great either, although it hasn't been as protracted as yesterday. When I'd been transferred from the RVI to ward 29 I had gone into urine retention, so had needed to be catheterised. There was thought today that the catheter might be aggravating my bladder and making the renal colic worse so it was removed this morning, and it does seem to have lessened the pain a little, although when it comes it's still bloody awful. However, it also seems that I've developed a urinary tract infection, with blood in my urine, which is making me feel rubbish and ill, and totally worn out. It's one thing after another, and all on top of Nn's death, and I feel like I'm running out of resources.

Then there's the whole thing of how I ended up in here this time - the allergy and subsequent asthma attack. Social Services are having to do an investigation into what happened because of the severity of the consequences. This is probably a good thing, but it is somewhat anxiety provoking. I don't want the carer who prepared the fated meal to become a scape-goat for the inadequacies of the system, and I don't want to be faced with negative attitudes myself when I eventually get home and have the carers back. I don't particularly want the same care agency to resume my care, because I think it might be quite difficult and ... well, can I trust that the same mistake won't be made again? Perhaps it'll mean greater vigilence by the carers when preparing my meals, but not necessarily. I don't know what the answer is. Anyway, the main thing is this protection of vulnerable adults high risk assessment investigation that's going on. A social worker conducting the investigation spoke to the staff on ITU when I was there, and they've also spoken to W to ask for her account of events. They were in contact with the ward here last week asking if they could come and interview me 'at some point in the next day or two', which I presumed to mean they'd come last week, but nobody came. The ward sister contacted Social Services about it yesterday and apparently they still plan to come and interview me, but didn't say when it'd be. In the meantime they sent up one of the hospital social workers to ask a few of the questions they had, although she also said that the investigating social worker would definitely be coming to interview me along with someone from the care agency! It's hanging over me now, causing me stress. I'm trying not to think about it, but it's difficult. It seems like a huge thing to be going on, and totally out of my control. Of course I can see that it needs to be done, after all the event nearly cost me my life, but I don't have much in the way of resources to cope with the enormity of it ... and as I say, I don't want the carer involved to be scape-goated. The agency are contracted to provide a particular service for me so they should be able to provide staff with adequate training and skills to provide that service. The fact is that they don't, so it's the system that's really at fault, not the individual. I just don't know what's going to happen or what attitude I'm going to presented with when I'm interviewed.

Sometimes life gets on top of me. Now is one of those times.

Monday, 9 May 2011

Slow progress

Not long after my last post I was very ill. The allergy progressed so that I was very itchy, bright red, nauseous, vomitting, wheezing, and beginning to swell. I took lots of antihistamines, which reduced the swelling and lessened the itching, but my breathing continued to deteriorate. I texted W to say what was happening, and she came and took me to A&E. At my first time of texting W I hadn't been sure whether or not I'd need to go to hospital, but in the end there was no doubt about it, and although we ought really to have called an ambulance W whizzed me up to A&E herself. Things were bad, but they weren't dreadfully dreadful, although I did get sent straight through for immediate treatment without any waiting around, and then I found myself in resus. I spent the night in the monitoring bay of the Emergency Admissions Unit (EAU) unfortunately getting worse, and increasingly tired, but somewhat overlooked as the place was busy with too few staff and several poorly patients. The disadvantage of being somewhat used to severe breathing difficulties is that I am now able to keep relatively calm through it all, which may seem like a good thing, and is to a degree, except that it can give a false impression of how ill I actually am. The gentleman in the bed next to me was quite distressed with his own breathing problems through the night so the staff concentrated on him, which is good, except that it menat that my needs weren't observed until much later. By the morning it was clear that I was in quite a desperate situation and I ended up in ITU on BiPAP for 22 hours. W was with me a lot of the time, despite having work to go to and a huge essay to complete for the last of her graduate diploma. And she told me that when she was leaving ITU for work at one point the sister pulled her aside and said that although I was a doing a little better I still may not survive. This doesn't give me any information I didn't already know for myself, nor W, but when it's said it confirms the truth and is hard-hitting. I'd much rather know these things for sure though - be told the whole truth - so I respect their honesty, and I think W does too. It's hard though. It's always hard. Thankfully, I did make it through and eventually I made it to the respiratory ward, although my usual ward 29 at Freeman didn't immediately have any beds so I had to go to the RVI resp ward. I don't like it much there. Maybe it's partly because it's not where I'm used to and I don't know the staff, but the whole atmosphere feels frenetic and disorganised, and staff-centred to me. They don't know me. I don't know them. They don't know that I know my illness better than them and they seem to find it hard to accept the fact that I do. I was still pretty ill while I was there, and I was getting more stressed out by being there too, so it was a huge relief when I was eventually transferred to Ward 29.

It's very slow progress, and I've been in hospital for 2 weeks now. The breathing is eventually settling and I managed to get off the aminophylline infusion on Friday (at least I think it was Friday...). I've now be transferred back onto oral steroids from hydrocortisone injections and have stopped having to have the intravenous antihistamines as well. All that is good. I'm still on oxygen at the moment, but a fairly small amount now. I'm utterly exhausted though. My body definitely feels as though it's been poisoned and as though it's taking a long time for the toxins to be shot of. Actually, the main problem now is that I have absolutely horrendous water retention. As you know, I've had some difficulty with water retention in previous admissions, but this time it's the worst it's ever been. My skin is splitting because it's so stretched with fluid. The stretch itself is painful. Most of the fluid is around my middle and my hips - hugely gathered around my hips so that I must be almost double my usual size (no exaggeration). My body is so overloaded that my bladder and my kidneys keep going into horrendous spasm, producing pain like I've never had before. I'm now on some meds to help with the spasms, and they certainly help the intensity, though they can still be protracted and very painful indeed. I'm on fairly high doses of diruetics as well as I have so much water to shift and my body wasn't shifting any of its own accord, but still there doesn't seem to be any significant reduction. The nurses say they can see the water sloshing around inside me when I move! I can't fit into my pyjamas. I can only stand to have the hospital gown tied loosly around the top of my neck because any pressure at all on my skin hurts. I did manage just about to squeeze into the bath for the first time today, but it wasn't easy and it was painful. It's demoralising. It's painful. It's embarrassing. It's uncomfortable. It's miserable. Everything hurts. I'm so heavy with the extra fluid that my back hurts if I sit for long or stand for just a few minutes. The weight of the fluid around my middle and up my chest is pressing on my lungs and making breathing harder, and a few days ago an x-ray showed some fluid on my lungs because of the oedema, although this at least seems to be clearing.

I'm miserable. I feel like a beluga whale. I'm sore. I'm in pain. I'm exhausted. My mind is in a blur from the events of the past two weeks and the unexpectedness of the allergic reaction. I'm thankful and surprised to be alive, but I'm so worn out and so sick of hospital.