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.

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.

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.

Something I could do without

When I got the news about Nn I felt as though I couldn't cope with the stress of my stupid carers coming so I cancelled them for two weeks. It seems incredibly ridiculous that the people who are supposed to be helping me are actually causing more stress, but they are. Today was their first time back here and I was dreading it. I received the time sheet on Saturday so knew who to expect, and was dismayed to see that I'm stuck with the most incompetent of them all for each of this week's visits.

Tonight I wanted Stupid Carer Woman (SCW) to make a pasta sauce. I gave her a recipe. A very easy recipe for a basic tomato sauce with the addition of mushrooms and fresh basil, reminding her that both these ingredients would need to be very well washed because of the stuff that gets sprayed on them and to which I'm allergic. Fine. Left her to it while I finished off what I was doing on the computer, until she called me back asking if 'saute the onions' means to slice them. Feeling despair begin to spread over me I explained what 'saute' means, and went through the rest of the recipe for any more difficult words ... such as 'cook'!

I went off to have my bath, afterwards coming back through to find that what SCW had made actually looked okay. A huge surprise. I had my dinner about an hour ago, and was equally surprised that it tasted okay ... not fantastic, and it had a bit of weird after-taste, but okay. However, I'm now very itchy scratchy, rather wheezy, and my insides feel squiffy. I suspect that SCW didn't wash the mushrooms and basil very well, because this feels very much like an allergic reaction to something, and I haven't eaten anything else that I could be allergic to. I'm hoping beyond hope that this doesn't progress into anaphylaxis, but either way, this is something I really could do without.

...Forever and ever, Amen.

It was Nn's funeral on Monday. It was in Dundee. I went north on the train, staying in Edinburgh, and doing a day-trip to Dundee. I saw seals in the Tay as the train went over the bridge into Dundee station. Seeing them made me smile in the middle of all my terrible sadness, and in some odd way it seemed apt that I should see these wonderful, wild animals enjoying the sea whilst on my way to Nn's funeral, because Nn loved the sea, was a very keen surfer, and could be somewhat wild too. My older step-brother, Nl, took Nn's surf board to the funeral and placed it at the front of the chapel before the service. He talked about Nn and his love of surfing in the eulogy. The last time Nn used his surf board was with Nl a very short time ago and apparently Nn had been full of life...

...Nn's guitar was placed at the front too, along with a bottle of vodka and his Newcastle United shirt - all things that meant a lot to him and made a mark on his identity. Nn played himself out of the world - a recording of him playing his favourite song of his own composition was played over the speakers as his coffin went down into the whatever-it's-called-at-the-crematorium-where-the-coffins-go-at-the-end-of-the-service. He chose when to exit the world, so it makes sense to me that he played himself out when he left the world completely ... except that he can't take my memories of him away, or the Nn-shaped hole that he's left behind.

When on the train from Edinburgh to Dundee I suddenly felt like I didn't want to do what I was doing. I didn't want to be on the train to Nn's funeral and I didn't want to go. Except that I did want to go and I wouldn't have missed it unless there was no way I could get there or I was too ill. Really, what I didn't want was for Nn to be dead and for me to be going to his funeral, and I knew that going there would make it all too real and undeniable. It did. It is. It is all too real. But the funeral also made Nn's suicide more unbelievable. It has been shocking. I don't mean that in a 'how dare this happen' kind of way, but rather that I am shocked/stunned/surprised. Everyone was. My older step-sister, A, said as much in her talk during the funeral service - that absolutely nobody had expected this. You know, he'd been at work in the morning. He was due back at work later in the day. Instead he booked into an hotel room...

Some have said to me that I must surely be angry with Nn for killing himself. I'm not. I don't think I ever could be. Why would I be angry with someone, particularly a family member, for being so desperately unhappy? Yes, I am angry that Nn is dead, but that is far from being the same thing as being angry with Nn. He obviously couldn't fathom any other way out of his despair, and he made a decision not to suffer any more. I respect Nn. I respect his decision. He did what he had to do for himself, and I accept that, even if it hurts like hell that he's dead.

Nn is dead.

I still find that difficult to see on the page/screen. It's one of those things that makes it both too real and yet more unbelievable.

I don't feel like I'm being very coherent today. Maybe it's because I'm still trying to make sense of it all myself, and that I'm trying to make sense of my emotions that are all over the place. Right at this moment I feel a little disconnected from my emotions, like it's the safest place to be emotionally or I'll become overwhelmed and dissolve into tears again, which is what I do at regular periods throughout the day. Other times I remember Nn and I smile, or feel the remembered frustration that siblings can induce when you're young. A lot of the time I feel terrible, terrible sadness, and almost all of the time something is reminding me of Nn.

You know, it was my birthday on Tuesday. It felt almost inappropriate to have a birthday this year. I got home from Scotland around lunchtime and a little later on I met W in town. We went for a quick drink in the sunshine before my OU tutorial. I was exhausted and didn't really have it in me to concentrate very well through the tutorial, but I did the best I could, and then W, L (from my tutor group) and I went for another drink. I had several, partly for birthday celebration and partly for inappropriate mind-numbing. Nn would have approved.


I want him back.

Lost

I've been wanting update my blog over the past ten days or so, but I don't know what to say. I have been lost for words in a very real sense, yet my mind has been full to bursting with thoughts and memories, and I've been overflowing with feelings and emotions. Nn's sudden and unexpected suicide has had a huge impact on me. Everything I do, everywhere I go, everything I see sparks a memory, although rather strangely most of them have been from when we were both quite young. Nn as a boy scratting in his Lego, always making some amazing vehicle that would end up being blasted to pieces by his toy helicopter, usually while he/we watched The A-Team.

Saturday afternoon trips down to the little cinema - The Forum - in Hexham for a cheap showing of something or other. I think that's where I saw The Empire Strikes Back.

Coming back from a holiday on the Isle of Skye and stopping at a wonderfully long and deserted beach on the west coast of Scotland not too long after we'd arrived back on the mainland. A bright, sunny afternoon that warranted a break in the drive. Dad and K (my step-mum (she died in 1996 and I have another step-mother now - B)) went for a stroll up the beach; I don't remember what my brother M was doing, though he may have been with my brother C who was running up and down the beach and in and out of the sea in his usual hyperactive way; while Nn and I were mesmerised by the millions of tiny sand eels that were wiggling their way out of the sand and flapping, seemingly desperate, on the surface. We thought that maybe they would die if they were left to their own devices so the two of us set to task 'rescuing' them. We each picked up as many of the wrigglesome creatures as we could, ran to the water's edge and tossed the sand eels back into the sea, then ran back to rescue more. It was a fruitless task because the sand eels popped up out of the wet beach quicker than we could gather them and throw them into the water, but we spent the best part of an hour trying to save the lives of these little creatures. It was only when a fisherman who'd been gathering sand eels as bait, and had been watching us for quite sometime, told us that the sand eels would be fine if left on the beach that we gave up, although I'm not sure that either of us really believed the fisherman. He was the only other person on the beach besides our family, and he had a bucket full of sand eels that squirmed like live spaghetti.

Later on that long drive from Skye to Newcastle (an 11 hour drive!) we saw a pair of golden eagles. Nn loved birds of prey and had spent all week hoping to see a golden eagle. Dad pulled the car in by the side of the road where several others had also stopped to look at the birds. Our binoculars were buried somewhere deep in the car amongst the camping stuff so we borrowed those of one of the other people who'd stopped. Nn was beside himself with delight. A golden eagle! Two golden eagles! He'd seen the elusive birds for himself, and the only thing that would've made it better for him was if he'd been able to reach out and touch them as they flew.

Smiles. Big smiles. He so often had a great big smile when he was a young boy. Of course this changed when he became a teenager, simply because he was a teenager. In his early teen years he'd spend hours in front of the mirror, preening himself, trying to look like Tom Cruise (and there was a passing resemblence), and then he'd practise clenching his jaw in just the way that Tom Cruise does in films like Top Gun. Nn loved Top Gun. We had it on video and he'd watch it again and again, sometimes whilst scratting around in the Lego, but later making Airfix models of Tomcats (his favourite fighter planes) or Phantoms (my favourite fighter plane ... not that I'm hot on fighter planes - it was a case of sibling infection). We both got a cheap airfix plane from the market one weekend. We thought they were a bargain until we got them home and opened the instructions. There were no diagrams and the writing was all in Japanese or Cantonese or something. Neither of us were going to be beaten by this, and we perservered, but it was no easy task and there was a lot of cursing that went on in the living room that day while we sat there trying not to superglue ourselves to the furniture in our frustration.

And later, much later. Several years later and a different house later, waiting for ages, and eventually knocking in the door in desperation while Nn sat strumming at his guitar, composing songs on the toilet.

I came across a recording online of Nn in interview and playing a couple of his songs (and one by someone else) on a Scotish radio station. It made me cry. It's not that he was the best of song writers (though he wasn't bad), and his untrained voice could be rough around the edges, but hearing him sounding happy in the interview, hearing his liveliness, although also hearing a sadness in his music made me cry. It made me miss him more and more. It made me desperately sorry that he had become so desperately unhappy and lost ... so unhappy and lost that he hanged himself...

...It's his funeral on Monday. I'm going up to Edinburgh tomorrow to stay with Mum and will go to the funeral from there. I'll only go to Dundee for the day, going back to Mum's in the evening and coming home on Tuesday. I'm going on the train. I usually drive to Edinburgh, but I thought it best not to in the circumstances. Too emotional a trip.

So sad. So terribly sad. I keep wishing it'll turn out not to be true, that Nn is still alive... I keep crying because I know it is true and he was so unhappy. I cry for his desolation as much as I cry for the loss of such a fantastic person. Poor Nn. Poor, poor Nn...

All mixed up

It's been a strange time since I last posted. My lungs are still on the slip, and it's getting tedious. I've had a load of study to do for my OU course with an assignment that had to be in by today, and which I somehow managed to get done and sent off yesterday despite being exhausted. The exhaustion isn't helping the POTS and I've been feeling quite ill with that, and the tinnitus has been particularly bad. This in turn has made sleeping really difficult, and for several days/nights I haven't got to sleep until at least 6.30am, but in an attempt not to get the days completely upside down I've only given myself about 4 hours sleep. I've also thought that still getting up at a fairly reasonable time might mean that I have more chance of sleeping the next night, but it doesn't seem to have worked that way. And then today happened and my brain has turned to mush.

I got a phone call this morning from my brother M. He'd had a text from our step-sister A. Yesterday our younger step-brother Nn killed himself. I'm in shock. I don't know how to feel. I alternate between crying and numbness, and between intense activity (as much as the lungs allow) as distraction and complete inertia and inability to do anything at all. I can hardly believe Nn is dead... and seeing those words together on the screen make it all so real and stark - my brother (albeit a step-brother) is dead. Dead. What a horrible word.

It's so tragic, so awful, so unexpected ... yet Nn had struggled for years so maybe it shouldn't be such a shock. But it is. It really is. He'd messed things up for himself along the way, but he'd always had huge potential, and knowing him when he was younger you'd never have predicted this as the inevitable for him. Never. He was a talented actor, a good musician (although mostly self-taught), something of a comedian. He always thought he was about to make it big, but it never quite happened for him and instead of doing the things he enjoyed and was good at, he spent the times he was well enough to work (mentally well enough) mostly being a salesman in various designer clothes stores. He hadn't been well enough to work much over the past several years. He'd done a bit, but not a lot, and I don't think the drifting helped him, because he also lost most of his enthusiasm for the music, acting, comedy. And yesterday he lost himself entirely, and we have lost him too... but it's a lost from which he can never be found again...

I have a million and one things whizzing around my head at a thousand miles an hour, yet I feel like I've lost my words. A few friends have been in touch since I've told them about Nn, and a couple of them have reminded me that they're here for me if I want to talk. I kind of do, but I have no way of saying what I'm feeling. Even writing this is a challenge, not just because of the content, but because I don't know how to express the complexities of my feelings.

...Too much. So tragic. Such a waste of a young man who could've been so much. So horribly sad. He was thirty four.

I can't comprehend it, except that I can because I know myself what it is to feel so desperate that killing yourself feels like the only possible way out, and although I'm well beyond those feelings I've been reminded of them today. The memory of them has come flooding back, and that's making the news of Nn's suicide all the more difficult, even if it does give me an understanding that perhaps most don't have...can't have.

I can't think straight. This is a ramble. I don't care that it's a ramble, but I hate it that I can't make anything make sense even to myself - not just the situation, but my own words.

Nothing is right.

My step-brother is dead.