Hard times

I'm struggling today, feeling very emotional. I'm physically exhausted and emotionally weary,  and I'm sick of being in hospital. It's not quite two weeks since I came in this time - though I've a way to go yet until I'm well enough to be discharged - but I had only been out of hospital for two weeks after a three week admission, and I never did get properly better between times. It takes its toll.

The week after I got out of hospital last time I had various blood tests done at the GP surgery, some of the results of which I'm still waiting. One result I did get was my haemoglobin (Hb) level, which was a surprisingly healthy 136, but since coming into hospital again this has fallen to an anaemic level of 95. This is quite a drop in a relatively short time, but not terribly surprising as, for some reason, I have had/been having a gastrointestinal bleed. There was one day last week - I think it was Thursday or Friday - when it was pretty bad and the doctor was quite concerned, but it has eased off now, so while it hasn't completely stopped it isn't as bad as it was. They had been thinking that I'd need an endoscopy or sigmoidoscopy as soon as I'm off the aminophylline, but today the doctor said that so long as there are no more bigger bleeds then it can probably wait until I'm back in Newcastle. That's fine by me, but the anaemia won't be helping my energy levels or my ability to cope emotionally.

For all that I'm away from home, it's good that I'm in Edinburgh and close to Mum and J. It makes a difference having them around. That said, I feel a long way from my friends in Newcastle and the support they give me. Yes, I'm in contact with them via Facebook and some of them text me or send me private messages through Facebook, but it's not the same. I know that Mum feels the pressure too, not that she in any way begrudges me the visits or the time, but she's not young any more and doesn't have the energy she used to. While I'm in here she's having to make all my food for me too because the hospital can't cater for me with all my allergies, and again she doesn't begrudge
me the time and effort, but it is a lot of work for her. I worry about her getting worn out.

Yes, today everything is getting on top of me and I just want to cry. Occasionally a few tears escape, but my lungs don't yet feel stable enough for me to really let go...then there's also the lack of privacy. I'm in a bay with three others. They're nice enough, but I don't really want an audience for my upset. I want to get out of here. I want some energy and some mental strength too. I want to be better.

Review of the year 2013

It's that time again when many of us take some time to look back at the year that has been.  2013 has been a difficult year for me, but I'm still going to do the annual review, so here goes...

1. What has been your biggest achievement this year?  Probably just surviving it.  It's been tough in many different ways, and there were lots of times when I really doubted that I would get through.  I'm still alive, and I reckon that's a huge achievement for this year.

2. What made you laugh most this year?  Hmm ... I've had some good laughs with friends, particularly R and M.  Other than that, probably (repeats of) the TV show 'Miranda'.  Oh, and I went to see Eddie Izzard earlier in the year too, and he was very funny.
3. What unfulfilled hopes do you have for this past year?  I really wanted to get my book about my asthma finished, but I had a long, long time this year when I wasn't able to write at all.  I've done a bit to add to it, but not enough.
4. What has been your favourite/most listened to piece of music this year?  Hmm, tricky ... Probably not one single piece of music.  I've gone back to listening to a lot of church choral music this year, maybe because I've done more singing again.  I miss taking part in that kind of music, making the music, but I do love listening to it, so I've listened to a lot of CDs of excellent church/cathedral choirs singing anthems and canticles.
5. What was your best holiday this year?  I've only had one holiday this year - when I went to Dorset, with stop-offs on the way and way back at Stratford and Derbyshire.  It was excellent, and revitalising. 
6. What new skill, if any, have you acquired this year?  I'm not sure that I have.  I'll have a think and get back to you if I come up with anything, but I'm not sure there's anything.
7. What's the best book you've read this year?  Oh gosh.  I usually read a lot, but for much of this year I found it very difficult to concentrate on reading so I've only read about eight books!  However, the best of those was probably 'Tuesdays with Morrie' by Mitch Albom.  It's a memoir based around Mitch Albom's weekly meetings with his old university professor who now, twenty years after their first meeting, is dying.  It's a moving book, with both sadness and joy, but always full of life.
8. What has been the biggest challenge of this year?  Depression and the various reasons behind it, but particularly one very difficult situation that I haven't been able to write about on my blog, but that had repercussions through many aspects of my life.  In some rather complicated ways it got kind of tangled up with physical health stuff as well as depression, but things are at last settling.
9. What is your happiest/fondest memory of this year?  Despite the year's difficulties, I've been extremely lucky to have the friends I do, and my fondest memories of this year are those of fabulous friends who have shown me such love and gentleness, often at times when I was at my lowest.
10. Of what one creation of the past year are you most proud or pleased? I'm pretty pleased with some of the writing I have managed to do for my book, maybe in part because it's been so challenging to write, but if we're thinking of more artistic creations then I guess the piece of glass that I made at a glass workshop in November.  So far as skill is concerned, there was very little in it, but I know the frame of mind I had been in the morning of that day, how insecure and incapable I'd been feeling.  I got the fired pieces back just before Christmas, and I'm really pleased with the main piece that I spent most of the workshop working on.
11. What new hobby did you take up/old hobby did you reinstate this year?  Singing.  Actually, that's not strictly true, because I helped to start up Flotsam (the choir) at the end of 2012, but I've kept at it this year, despite the hospital admissions and various health problems.  This year I also took part in the Christmas choir at church, which I haven't done for about three years.  We don't usually have a choir at the church I go to, but every year at Christmas those of us who want have six or seven rehearsals in the weeks running up to Christmas and 'perform' at the service of Nine Lessons and Carols.  It was lovely to be a part of that again.
12. What one thing would you really like to do next year?  Finish writing my book about my asthma.
13. What was the saddest thing of this year?  There has been a lot of sadness this year.  One was at the beginning of the year when my dad had to move in to a care home; another, just a few short weeks ago, was the death of my wonderful friend Caroline.
14. What has been your best discovery of this year?  Probably the company Good Wine Online who specialise in sulphite-free and low-sulphite wines.  I'm extremely allergic to sulphites and have missed having a glass of wine, because sulphite-free wines are practically impossible to find in the shops.  I was very, very lucky to be given a case of twelve bottles of wine from GWO from my brother and sister-in-law for Christmas.
15. What news story of this year has had the biggest impact on you/do you most remember?  Gosh, a year of many news stories, with many of them being of particular note.  Possibly the two international news stories that I most remember are 1) The chemical weapons attack on the children in Syria; and 2)  The gunmen's siege of the shopping centre in South Africa.  Having said that, the news of Nelson Mandela's death was also significant.  I think a lot of the news stories about freak weather events, both abroad and in the UK, have also had a big impact on me - things that no-one can prevent and have potential to affect all regardless of status or wealth.  There seem to be increasing numbers of wild weather events causing widespread devastation.
16. What's the best film you've seen this year?  Another year when I haven't seen even half of the films I've wanted to see.  I've yet to see Philomena or Gravity, both of which or on my list to see before it's too late.  Perhaps the best film I saw this year was Les Miserables.
17. What was your best buy this year?  I think that has to be my Ugg boots.  Obviously I didn't get much wear from them through the summer, but they were great through the very cold spring and excellent again now.  My mum helped me buy them, and they were at her suggestion after I got frostbite in three of my toes in my left foot in February (actually, the night I went to see Les Miserables at the cinema).  My big toe has never fully recovered, and the circulation in my feet seems to be pretty poor, but the Ugg boots certainly help to keep my feet cosy.
18. What has been your best day out this year?  I was thinking about this in bed earlier today, trying to think of days out that I've had, and you know, they've been rather few and far between this year.  I had a nice day out with my brother, Dad, and step-mum around Easter time (I think my brother came up on his own, without his wife or children).  We went to Belsay and had a walk/trundle through the quarry garden to the castle.  Other than that, the other day/part-day out that sticks out was the glass workshop I mentioned earlier.
19. If there’s one thing you did this year that you’d do differently if you could, what would it be?  There was a misunderstanding and over-reaction (on my part) that led to an argument with an online friend.  It was resolved relatively quickly with the person it was actually with, but someone else jumped in on the act and raised it again months later.  If I could change that initial argument, misunderstanding, and over-reaction, I would.
20. Is there anywhere you'd like to visit next year?  Yes, there's a place nearby that opened almost two years ago, but to which I haven't yet been and want to.  It's a sculptured landscape called Northumberlandia and is only about 20 minutes drive away so I really don't have any excuse.
21. Name one thing you did this year that you'd like to do again?  The glass workshop.  Once I let go of the mangle of stuff in my head that day, I had a wonderful time and thoroughly enjoyed it.  I know that I will do it again because I got a voucher for Christmas from my step-dad for a full day's workshop at the same place :o)
22. Who gave you the best advice this year?  My psychologist.  She's given me lots of advice, or at least helped me to find my own advice, seeing as that's how therapy kind of works.  Actually, one of the best pieces of advice she did clearly give me was to share with my friends that I was depressed.  I was distancing myself from people, from my friends, in the fear that they'd distance themselves from me if they knew that I was depressed.  S made me realise the paradox in this and helped me to question the helpfulness of my action.  She suggested I tell some of them.  I have been blessed with wonderful friends who have embraced me in my depression and loved me through it.  I know it's not easy for them, but they've stayed with me all the same.  I thank God for them, and I thank S for her advice.
23. What new skill would you like to acquire next year?  I've forgotten the scraps of crochet that I learnt last year, but I'd like to learn to do it, and this time properly.  I need to persevere with it once I've started, and really acquire it as a skill.
24. What was your favourite TV/radio programme this year?  Broadchurch  I think I missed the first episode, but I saw the second with my mum and J when they were staying with me for a couple of days.  I got completely sucked in to it and loved it.  I was ridiculously excited when I discovered that West Bay, near where I went on my holiday, was where Broadchurch was filmed.  Fab.  Can't wait for a second series.
25. What would you like to make more time for next year?  Writing.  I have lots of time.  In many ways, far too much time, but I need to make sure that I dedicate a decent amount of that time to writing.  I need to stop thinking about it and just do it.  I need to stop talking about it and just do it.  I just need to do it.
26. What has been the biggest disappointment this year?  Most of the year has been a huge disappointment, and perhaps the resurgence of depression has been one of the biggest disappointments.  Some of the causes of some of that depression have maybe been bigger disappointments, but I suppose that ultimately I've been hugely disappointed in myself.  I have lost direction and lost some of myself, and that is an enormous disappointment.
27. What was the best or most enjoyable concert you went to this year?  Nigel Kennedy He's an odd chap, but a fantastic violinist, and his concert was amazing.  A huge mix of straight baroque, jazzed up baroque, and jazz, with a big eastern European influence at times.
28. What do you think was the best thing that you did for yourself during the last year?  Stood my ground when I needed to, even though it was incredibly difficult.  I sought the help that I needed to stand my ground, and to get through the protracted aftermath of it.  It was terrible in many ways, but has also been a huge relief - a step to getting myself back.
29. What is the biggest difference in yourself from this time last year?  I'm no longer in an abusive situation and I'm finding my way through the damage that was done.
30. What are you most looking forward to about next year?  Time with friends and time with family.  It's both my mum's and step-dad's 70th birthdays next year, and between the two they're having a joint birthday week away with all the family.  There's going to be immediate family like myself, my brothers, and my step-dad's brothers, but also extended family of my step-dad's nephews and their families.  I think various people will be coming and going through the week, but there's going to be one day of particular celebration when all those who can only come for the day will join us.  I'm really looking forward to the time away and the time with family.

Telling it as it is

Again, again, again, it's far too long since I last blogged, and again I apologise.  I've been wanting to blog since shortly after my last post, but there was something stopping me ... something I couldn't quite put in to words.  I've been thinking about this over the past few days as again I've had itchy fingers for blogging without actually putting fingers to keyboard.  It should have been obvious to me what this was about, but for some reason it wasn't until now.

Some of you will be aware that a couple of months back I had some trolls on my blog, and as much as I hate to admit it they got to me.  Coupled with the depression I've been battling even without the trolls, I've felt uneasy about sharing myself with the ether as I've previously done, but I've come to the conclusion that I can't let them win.  They are bullies and I can't let bullies win.  I can't even let them hurt me because they're not worth it - they're not worth that power.  So today I'm writing my blog.

Last time I wrote I said that things were improving in respect to the depression, and it's true that I'm not in the same place of crisis that I was earlier in the year, but over the past couple of weeks I've realised who unstable that improvement is.  It's not that I'm suicidal again (as I was earlier in the year), but I do still struggle.  Considerably.  A couple of things have happened in recent weeks that have shaken the weak foundations I was trying to build myself on, and consequently I've fallen.  I've seen my psychologist and again spent the session in tears, after a few sessions when I felt as though I could get my thoughts and feelings out without tears coming with them.  I'd got to a level where S thought that we should try making the sessions fortnightly instead of weekly, and I thought this might be manageable.  We tried it, and it was okay for a short time, but then at the end of last week's session S suggested she see me again this week because of my downward slip.  I was pleased to accept the increased frequency, even if it's only for a short time.  I know that for now I need that extra bit of support, but I don't like to suggest it myself because I know too that S's time is limited and in demand.

One of the things that's happened recently is that I've had yet another diagnosis added to my list.  I've been feeling unwell in a different way for a while so I went to my GP with some suspicions of the cause of the unwellness.  I thought I was developing diabetes, which is a common side effect corticosteroids, especially when you've been on them for a long time like I have.  I went through my symptoms with my GP, and as I had already been checking my blood sugars (BMs) some of the times I'd felt particularly unwell (I used to get low blood sugars for some reason so had a monitor from this time) I was able to tell the doc that BMs had been very erratic and often going up to between 11-13.  The GP said he was 90% sure that I was right, but wanted to do some other blood tests to confirm.  These were spread over about three weeks, so it was stressful time of kind of being in limbo - having a strong suspicion of diagnosis, but nothing actually confirmed, and no treatment when feeling so unwell.  Eventually the results came back and I was called back to the GP, and the results weren't quite what we were expecting.  In many ways this is a very good thing, but it's also confusing because I'd pretty much prepared myself for a diagnosis of diabetes.  The actual diagnosis that's been made is Impaired Glucose Tolerance (IGT) - basically pre-diabetes - but the perplexing thing is that with IGT I should not be symptomatic, and I am.

One of the gold-standard tests for diabetes is a blood test called HbA1c.  This measures the average blood glucose level over the previous three months, and for me this came back as borderline.  My GP is wondering if perhaps diabetes has developed relatively quickly so there's been a sudden increase in my blood glucose levels, but that because the HbA1c is an average then this has given a lower reading than it would if I'd been diabetic for the full three months.  Does that make sense?  So, the upshot is that I have to go for another HbA1c blood test at the end of January - exactly three months from first one.  However, the weirdness continues, because as well as the HbA1c I also had to have some fasting blood sugar tests (basically BMs done by the GP first thing in the morning before having anything to eat or drink), and these results were rather all over the place.  One was normal-low; one was normal-high; and one was high.  I am confused and my GP is confused.  I still have symptoms.  I still feel unwell, particularly with what I've come to term 'hyper-head' - a weird kind of feeling of pressure building up in my head, sort of a headache, but not quite a headache feeling, and it comes on when my BMs are high.  But even with hyper-head and other symptoms I'm not on any medication to alleviate any of it.  That's usual for IGT - not to have medication - except sometimes when it's steroid-induced, as mine is ... but then with IGT I shouldn't be symptomatic.

It may not sound like much really, but actually it's all been stressful, and the lack of anything to alleviate any of it is difficult because I can do nothing to make myself feel better.  The suggestion at this stage is diet control, which would be fine if there were much I could do to alter my diet, but I already eat a high fibre diet with wholegrain pasta, rice, and bread rather than the refined white stuff (I'm allergic to the white varieties, which is too complex to go in to here); I don't eat many refined sugar products; I don't/can't eat ready meals - all main meals are cooked from scratch by my carers - because of allergies, and that's also in accordance with a pre-diabetes diet.  I haven't yet found any major changes I can make to my diet to suit IGT other than to reduce the number of oranges or other high fructose fruits I consume.  Oh, and reduce the amount of fruit juice I have, not that I've drunk litres of it before now.

You know what's ridiculous about all this?  The cat (Zach) was diagnosed with diabetes in the summer.  When I got home from hospital in August I was really worried about him because he'd lost loads of weight and just didn't seem right.  I took him to the vet thinking that the problems with his kidneys may have returned/worsened, and actually that's what the vet initially thought.  She did some blood tests, and much to her surprise his kidney function was back in the normal range, but his blood sugar was high.  She did a test similar to the HbA1c, and after a half hour wait the results were back and diabetes was confirmed.  Zach was immediately started on insulin injections twice a day, initially on a low dose, but further tests a couple of weeks later showed the insulin had to be increased.  He's now a lot better, has his energy back, is back to running around the house, eating properly again, and loves to munch on people again too (this isn't something I enjoy, and try not to let him do it, but he's particularly 'characterful').  He'll have to go back for another full day of tests in a month's time - just before Christmas - to see how things are going with his bloods through the course of the day, but he's so much better.

When I first started to notice my own symptoms, I thought I was imagining it, or just had too much empathy with the cat, or something.  To be honest it was kind of a relief to have the doctor confirm that something was awry, but actually I'd much rather have nothing more be going wrong.

Is it petty that it's all been getting to me and contributing to my depression?  It some ways it feels it is; in others it seems reasonable.  I could just do with some time of no added stress, but it doesn't look like that's going to be any time soon, what with all this, various other big on-going stresses, and my lungs playing up.

I didn't really mean for this to be a moan, so apologies for that, but I guess this is me not being defeated by the bullies - I'm telling it how it is.

A little bit of a few things

I'm far too aware that it's far, far too long that I wrote a proper post, any post at all in fact, but particularly a proper one.  I haven't even finished showing you photos of my holiday, but it's even longer since I actually wrote anything.  Part of my absence is because I've been trying to gather myself.  This year has been tough, very tough, in many different ways.  I've shared some of the depression here, and some of the physical illness, and some of the other stresses, but there's been a fair bit that I haven't shared.  Some of it I can't talk about here, not yet anyway, but I think it's enough for the moment just to say that there's more going on behind the scenes than most are aware of.

I've needed a bit of space.  My holiday helped, but there's always a certain amount of post-holiday gathering that needs to be done to get one back in to the real world.  That can be tough when the real world has been tough.

I still have a fair amount going on - difficult things/situations  to deal with - but I'm slowly beginning to feel a bit more ... more me.  I think the start of term has helped somewhat, not that I'm a student these days, but choir (Flotsam) only runs through term time, and it just feels like there's generally a bit more structure around with other things going on.  Having said that, I did sign up for a short writing course at Newcastle University again.  It's actually a course - Memoir Writing -  that I did as a module towards my MA, but the short modules are open to the public too.  After not having my brain function in the right way for 'proper writing' almost all year, I was feeling closed up, blocked, trapped, and I thought that the short course might help to open things up again.  It did.  Six weeks of prompting, encouragement, recapping on technical aspects, etc really helped, and I wrote close to 10,000 words towards my book.  After almost a year of practically zero words, that's a huge improvement.  I hope I can keep up the momentum, but finding motivation for anything is still challenging at times.

One major difference between now and a few months ago is that I am able to look forward to things.  I was trying to keep putting things in the diary before, but mustering up a sense of excited anticipation for anything I would ordinary have looked forward to wasn't happening.  I'm a way up that hole now and can enjoy the anticipation of good things ahead.  Last weekend I went over to a friend's for chocolate fondue with a few others to help R celebrate her birthday.  I had a lovely evening with lovely people, lovely fondue, and a fun game of Apples to Apples, which I'd never heard of before.

On Tuesday a couple of us went to a local fireworks display.  Twenty to thirty minutes or so of colourful explosions filling the dark November sky really does help to blow dust from the brain - that and friendship :o)

Tomorrow afternoon I'm joining some friends for a workshop in glass work.  I'm not quite sure what it's going to involve, but I'm really looking forward to it.  The anticipation of fun with others, learning something new, something creative, making something, it's all good, and I love that I can enjoy the anticipation.

There's been some health stuff going on over the past couple of weeks.  I don't really want to discuss it at the moment because I don't have firm answers yet.  I've had various blood tests, and have another - hopefully the last for a while - on Monday, after which I'm hoping my GP will give me some of those answers.  When he does I'll tell you about it, but to be honest, I've been finding it all rather overwhelming lately and haven't wanted to think about it too much while I still don't have a truly confirmed diagnosis, even though the doctor is 90% certain of his preliminary diagnosis.

Part of the process of gathering myself has been evaluating where I'm at in a slightly more general way than just the immediate present.  For quite some time I've had ideas of possibilities for myself and my life, but they all ground to a halt when I got trapped in the great pit of depression.  In reality, the possibilities never really disappeared, but I was so far down the pit that I couldn't see the possibilities over the top of the hole.  I'm climbing out of that pit now, and every so often I get a little glimpse of things that are waiting at the top.  I've caught sight of one of those possibilities, and after failing to believe it for a while, I'm now thinking that maybe it could happen - maybe I'll get out of the pit, climb over the edge, and have those possibilities become realities.  I'm digging a foothold in to the edge of this hole to give me more of a grasp to the edge.  I'm trying to climb up and eventually out, and one of the things I've done that I'm hoping will get me out is arrange a meeting.  I have a meeting next week with one of the professors in the English department at Newcastle University to informally discuss the possibilities of doing a PhD in creative writing.  There are a lot of things around it to discuss, with funding being a major issue, and my health not being insignificant either, but it's something I want to do.  I do.  I really want to do it.  You know, even ten years ago I didn't think I was intelligent enough even to do an undergraduate degree, but I got a First class honours in my BA.  I actually started my post graduate studies during my last year of my undergraduate degree so got my Post Graduate Certificate in creative writing within a month of undergrad degree ceremony.  A year later I got my MA.  I want to go further.  I want to do a PhD, and not just for the sake of it, or to prove anything to myself or anyone else.  I want to do it because I love learning, I know what my proposal would be, I know what I want to get out of it, and there might be possibilities for me once I've done it.  The earliest I could possibly start would be next September, but I know too what I would do between now and then - the book that I've been working on for a while.  The meeting next Wednesday is one huge mass of possibilities, and the outcome of it could have a huge impact on the rest of my life, even though it's informal.

This, all of this, the possibility of a PhD, the love of education, what I get from writing, what I hope I give through writing, my music, my singing, my health, my creativity, my friends, my friendships, fireworks, games, fondue, and words, these are the things that help make up me.  These are my possibilities.  These are all important in rediscovering myself.  Gathering them all together again, back in to the pot of me, takes time because they've been spilled out and scattered in dark corners of the pit, but I'm finding them again, and I'm more hopeful that before too long I'll be standing at the top of that deep hole and shouting, 'Hello folks, I'm me again.'

I am

It's such a long time since I've blogged - too long.  Part of the reason is that when I was in hospital I didn't have my computer and found it such hard work typing out my posts with one finger on my phone.  I also had an awful lot going on, and needed a bit of space to deal with some of it ... not that I've really managed that.  However, I am now out of hospital after a five week admission and have been on holiday.

Very briefly, I had great holiday with a good balance of doing fun and interesting things and taking things gently.  I went first for three nights in Stratford-upon-Avon, then for a week in west Dorset, and finally for three nights in Derbyshire (actually it was Staffordshire, but close to the Derbyshire border and with a Derby post-code).  I'll post more about my holiday next time, but there's something else I want to talk about now.

So what I want to talk about is something that was said to me while I was in hospital.  It was said by someone who I had had some difficulties with for a few months, but whom I'd previously considered a friend, and it was said during my last hospital admission at the time when I was on the respiratory ward, but had slipped back, was having to fight hard, and was back on BiPAP.

The basic situation was that I went on to Facebook (via my phone) when I was on the respiratory ward after not having been on at all while I was in ITU and HDU.  I went in to a group of which I had been a part for a number of years and was asked by a couple of members how I was and what had happened.  I said a little of what had happened, how things had been, and that I was struggling again.  One member of the group then asked me more about what had happened so I expanded on what I had already said.  Another member of the group - the one with whom I'd had previous difficulties - suddenly exploded at me.  She said a lot of things, both in the group and in private messaging, but the most hateful and despicable thing was when she said, 'You're life is too different from mine or anyone's here to comprehend living.  You should stop trying to live.  Your existence is offensive.'  As admin of the group, she then expelled me.

I'm not repeating this here to vilify her or to gain sympathy, but rather to explore some of the issues it raises for me.

At the time this was said I had been off all antidepressants for a week.  They'd been suddenly stopped in ITU in case they had played a part in my low calcium levels and the terrible loss of muscle/neuro control.  This is not how antidepressants should be stopped in usual circumstances.  The combined consequence of this and my physical situation/illness was that I was extremely emotionally unstable and feeling very depressed.  I was also finding it unbelievably difficult to comprehend everything that had happened in the previous nine days.  I didn't think I could get through the second wave of physical fight that had hit me, and I was questioning whether or not I actually wanted to survive because to do so meant only to have to face the same situation again some time in the future.  With what was said, I was then hit with the thought that I had no right to live.  Someone I had previous trusted had declared my life unworthy, and I couldn't help but think that maybe they were right.  Maybe I shouldn't be alive.  Maybe she was right and my existence is offensive to those who live 'normal' lives.

Maybe all of us who struggle to stay alive actually have no right to life.  After all, in previous times there wouldn't have been the medical science to keep us alive.  Perhaps, according to the rules of natural selection, we should die out and let the healthy people get on with developing a super race.

I began to believe this.

I began to believe that I ought to give up trying to breathe, that I should take off the BiPAP and give in to the suffocation.

The doctors kept checking on, not knowing what had been said, what I was thinking, how I was feeling.  They kept looking worried, and the ITU Outreach team and anaesthetists kept coming to see me.  I kept doubting that I had a right to life.

But what about others I know, friends around the country with the same condition as me.  If I didn't have the right to life then neither did they ... but that's not what I believed for them.  Whether or not I should be alive, the life I have had has been made richer by my friends, including those who have regular severe asthma attacks and those with other life-threatening/life-limiting conditions.  They may not now be able to contribute to the country's economy - like myself - but they are still valid individuals, and they still positively contribute to the lives of others.  I don't often feel as though this is true for me, but I try to challenge it by looking at the evidence - the fact that I have friends.  They aren't my friends out of sympathy (that is not friendship), but I guess because I must give them something they value...

The question of the right to life goes on: where do you draw the line?  I mean, at what point is one's life considered unworthy?  Is it based on how much you cost the health service?  Or the amount of medication you need to take?  Or the number of days per year you are unable to work?  Is it based on how much of a challenge your illness/disability is to others?  If so, then who are those others - officials, medics, politicians, a public poll?  What about if you weren't born disabled/unworthy of life, but became so later on?  Should those people be 'involuntarily euthanased'?  If so, then when does that become murder?  Or does murder only apply to healthy, worthy people?

My life challenges me, so I'm not surprised that it challenges others too, but I didn't ever think that it would be considered offensive.  Obviously it does offend some ... well, it's certainly offensive to at least one.  What can I do?

For now I have made my decision: I will continue to offend that individual by continuing to exist.

I cannot apologise for my existence.  I cannot apologise for the way my ill-health challenges that individual and anyone else it has such an effect upon.  That challenge is their response, their feelings, and therefore their responsibility.  That's not to say that I'm not hurt by the belief that I have no right to life - I am, I'm deeply hurt, and I'm hurt by the timing of this being said to me - but I won't let the cruelty of one person kill me.  For now, even while I continue to have doubts about my worthiness, I will keep existing for those who outnumber that cruel individual - for my family and friends who, for whatever reason, want me to be alive.

Stability

Eight days after entering ITU I was recovered enough and stable enough to be moved to a ward, my usual ward at Freeman Hospital. I'd managed to wean down the BiPAP a fair bit, although I did still need it at night and for some periods in the day. I still had some abdominal pain, despite the appendicitis having been treated, and the surgeons were still wanting to do an investigative laparoscopy because scans had come back clear. They were still 'discussing' this option as I left the unit and their hospital, but I'm thankful to say that the medical doctors weren't going to risk putting me under an anaesthetic for anything at that time.

The ambulance trip between the hospitals was very uncomfortable, mostly because by this time I was terribly water-logged due to the right-sided heart failure. I'd been on a fluid balance chart (measuring how much fluid I take in and how much I pee out), so we knew that during each day of my admission I'd retained between 500 - 750 ml fluid. That's a lot! After 8 days that's somewhere around 6 litres! It felt like it. My torso, thighs, hips, and waste were incredibly swollen, even my arms were pudding-like. In fact the only part of my that wasn't blown up like a baloon was the lower half of my legs that had surgical stockings squeezing the fluid upwards. My skin was stretched to splitting point, and it felt as though it would tear if I moved and caught it on the bed sheet, so bumping around in the back if an ambulance was truly excrutiating, let alone with the additional mystery abdominal pain.

We arrived on the ward at long last, and I shuffled my pained, exhausted, and weary self into the bed. Not quite as delectably comfortable as the moving airbed mattress I'd had in ITU, but comfy enough, and more importantly I was with my usual care team - almost my friends; almost my second family.

I couldn't sleep. I've had a huge amount of stress recently, and the trauma of all that had immediately prior to, and during, the admission so far was filling my mind. But eventually I dozed, though only for three-quarters of an hour,  when I woke once again unable to breathe. I had nebs, and more nebs, and the doctor was called. She did blood gases, which weren't utterly dreadful, but they were far from good, so the BiPAP pressures were increased again, having only just begun to drop them a smidgeon earlier in the day. I wasn't quite back to square one, but I wasn't that far from it either, with my potassium levels destabilising again and my infection markers rising. I was back on BiPAP full time, unsure again if I was going to survive. I didn't know if I had the physical energy or mental strength to get through, to live, and part of me was questioning the futility of it - why fight to survive this when it will only strike again in the future if I do. Part of me did give up, maybe even died. My only option was to ask my friends to pray, and leave It for God to decide. I don't know why God makes the decisions He does, or how He got me through it, be He did in the end, and I'm still in the world. It's more than I expected.

Nearly four weeks since I was admitted and I'm still in hospital. Although the Freeman ITU Outreach Team were assessing me several times a day,  everyday, for about a week after my transfer, I've managed to stay on my usual ward, the only change being that soon after I arrived I was moved to a room right next to the nurses' station where they could more easily keep a very close eye on me. I've been off BiPAP now, after a slow wean, for a week I think, but then there was the reduction in aminophylline to get through, and with the fluid retention and heart failure, this was becoming a pressing concern. We know from experience that I have to do a very slow wean off the aminophylline or my lungs go off again and I'm back at the beginning. We had to take a risk this time, and although it was still slow in comparison to most, we had to go more quickly than we usually would. The sooner they could stop any extra fluids the better for my heart,  which still isn't it great shape. I'm told it could take some months for my heart to recover, even if/when the fluid reduces, and that this time is somewhat dependent on how well behaved or otherwise my lungs are during that period. Certainly this time I've been knocked well of course,  though that's not surprising given the complexity of the admission and the many complications along the way. I am incredibly weak, can barely walk at all, although last night I did begin to insist that I have help to walk through to the en suite toilet instead of using a commode. Regaining toilet rights is always a big step along the road to recovery, physically and emotionally. Everyday I have a short session with the physios, with one of them supporting me and the other following behind with a chair for when I'm about to pass out with the effort. I don't feel like I'm making much progress, if I'm honest, and I get really frustrated, but the physio tries to be encouraging and she keeps reminding me how poorly I've been. Part of my reclaiming of toilet rights is self-imposed physio, because I know that while it's really hard work and I'm pushing myself hard, it's only by doing the work that I'm going to get stronger.

The mystery of the abdominal pain in addition to that from the appendicitis still hasn't been solved. It's still very much there, being painful at a score of 5 or 6 out of 10, despite copious pain killers. There was a snuffle of excitement when I contracted another UTI because they thought that could be the cause, but the antibiotics did their thing, the infection was cleared, and the pain has remained. At the end of last week the consult suddenly decided that I should have an xray of my spine to check that I haven't developed a crushed vertebrae from the long-term high-dose steroids. He thought the pain could be referred to my abdomen by nerves, but the xray has shown that this is unlikely,  because while it does show some wear and tear of my spine, they've decided it's not yet signigicant or something to worry about (though personally, it doesn't fill me with joy to know my spine is worn and torn). Next up, I'm told, is the gynaecologist,  not that they have any specific concerns they want investigating,  but rather just to cover all bases. I've almost given up on finding an answer, and I'm very much feeling like a lab rat undergoing test after test after test. The consultant says he tries to he reassured by the clear scans and xrays, etc, but actually he is a bit concerned. He wants, if possible,  and for as long as possible, to 'keep things non-invasive', but says that it might in end up with investigative surgery. Maybe I'll see if it settles itself. Maybe I've had enough of being prodded and poked and tested and scanned. Yes, I most definitely want to be pain-free, but there aren't any guarantees that investigative surgery would find anything or fix anything, so then what?

Now I'm tired - physically drained and emotionally exhausted. I have a lot of pressing on-going matters and situations to deal with, and then there's the fall-out from having been so poorly for so long and with so many aspects to it. I was struggling with depression before this admission began, as you know, and the unexpected and atypical nature of it has compounded that. What I really want now is to get well enough to go home; cuddle the cat who I'm missing dreadfully; perhaps take the cat with me for a few days at my mum's; and go on holiday as planned at the end of the month. I want to recuperate, regenerate,  spend time with friends and family. I said to my psychologist on the phone the other day that I feel like I've lost myself somewhere - with all that's happened and still happening, I've left myself behind and I don't know where. I'd like to find where I am, go meet myself, and bring myself back to somewhere familiar. Good familiar. I can't do that while I'm still on hospital, so I need to get home as soon as is realistically possible, but as yet I still don't have a date for discharge.

Thankful

There are a various things going on for me at the moment, most of which I can't discuss in this public arena.  I'm afraid I'll have to be vague and just say that it continues to be a difficult time, so to counteract this, and to lighten the mood of my blog from recent months, I'm going to spend a bit of time thinking about things for which I'm thankful.


1.  Poisonous ivy

Specifically, I'm thankful for the poisonous ivy that's growing up the side of the house opposite mine at the back.  The ivy has been there for years, and other than cheering up a drab wall has been of little note, but this year it has provided a safe place for a pair of blackbirds to nest.  I live in a built up area only a couple of miles outside of the city centre, and very few houses in my immediate neighbourhood have gardens that encourage small birds, but there has been a noticeable difference in recent years.  Maybe it's the conservation work done by 'Friends' of the park down the road, or perhaps folk have been putting bird seed/food out, but over the past few years there has been a rise in the number of small birds in the area (as opposed to pigeons and sea gulls).  We've had a lone blackbird for the past two or three summers that has sat on the chimney stacks and filled the air with beautiful song.  I love blackbird song, and this year the air is rich with it because the lone male has found a young lady blackbird and the pair have nested high in the poisonous ivy opposite.  Apparently blackbirds have two or three broods a year, and my neighbourhood pair are already on to their second.  It's wonderful.  It's not often very noisy at the back, so if you're very quiet and listen carefully, you can hear the tiny chirruping of the chicks in the nest.  As the chicks have grown, the adults - particularly the male - try to entice the youngsters from the nest with a morsel of food and a short whistle of song.  With a lot of encouragement, the fledglings dare to take their first tentative flutters from the safety of their nest and soon learn to fly with confidence.  I love watching this circle of life unfold almost in front of me, and listening to the variety of beautiful blackbird song, and every so often one or other of the adults will venture in to my yard in their hunt for food.  I'm not quite sure what it is they find on the concrete or amongst the flower pots, but they always seem to go away with something in their beak.  Yes, I'm thankful for the blackbirds, and for the poisonous ivy for giving them a safe place to nest.

2.  Friends

I have some wonderful friends who have stuck by me in both difficult times and good.  They text me, phone me, come round to my flat, take me out for an afternoon, send me cards in the post and private messages on Facebook, make me cups of tea, invite me round to their homes, make me laugh, share my tears, sit with me, go with me to the coast or the park, swap a little part of themselves for a little part of myself.  At times my trust in friendship has been challenged by folk who have presented themselves as friends, but have turned out to be far from that.  Those around me now are genuine, safe, trustworthy, and true, and to know that for certain after betrayals that have been is very precious and definitely something for which I am thankful.

3.  Sunshine

It feels like a long time since we had any prolonged sunshine up here in the north-east of the country - perhaps a couple of years - but the last week or so has been beautiful.  Today has been a fair bit cooler with temperatures back down to 16-17C, but I don't mind because the forecast is for it to warm up again tomorrow and Friday.  Sunshine lightens me.  Of course it doesn't take the stresses away, it doesn't make them smaller, it doesn't make them any easier to deal with, but it does force in a smidgen of light.  The warmth of the sun entices me outside, even if it's just to the back yard, and wraps itself around me, like a hug from God.

4.  The cat and the vet

Zach is so precious to me.  He is a wonderful cat with enormous character who seems to know when I'm upset, when I'm ill, and when I need cuddles.  He also loves to come for cuddles when I'm lying on the sofa with the computer perched on my legs and tummy; he leaps up, on to my feet, clambers around the side of the laptop, sits on my chest in front of the computer screen, and purrs in my face.  Not particularly helpful for typing or seeing any of what I'm trying to do on the laptop, but his purrs are irresistible so he more often than not gets the cuddles he's demanding.  He's got his summer coat at the moment (obviously), which seems to be a great deal thinner than his winter one, and as he's aged he's lost a fair bit of muscle mass.  He's still very fit and healthy, but he'll be sixteen later this month so he's getting to be an old man and I can feel the bones of his spine when I stroke down his back.  He spends a lot more time sleeping now than he used to, although he still has a lot of crazy running around times, and he is still fantastic company.  I love Zach so very much and I'm thankful for the love and joy that I get from him.  He hasn't often needed a vet for anything very severe (only twice in his life), but even the little things they do for him make me thankful that they are there.  I had to take him last Friday because his claws needed clipping.  They'd needed to be done for a couple of weeks, but with stresses of recent times I'm afraid that they'd been somewhat forgotten about, and then on Friday he got the two innermost claws on his front paws entwined in each other when he was clawing at his scratching post.  He couldn't get them unhooked so I had to help, which wasn't easy and he was obviously distressed about the situation.  I explained to the veterinary nurse what had happened when I took him for his claw-clipping an hour later and she had the vet take a look at him.  The poor little lad has sprained one of the toes on each of his front paws, but he's okay, and after keeping a close eye on him for the past 5 days I think he's probably healed now.  So yes, I am thankful for the vet for keeping my precious little lad healthy and checking him over for free last week.

5.  My wheelchair

When I think what I used to be able to do it almost seems unreal ... it certainly feels unfair at times.  One of my brothers and his family are going camping this summer, which is something I used to love.  The last time I went camping was in 2006 when I had an amazing holiday on my own, camping my way around the country for four and a half weeks.  It was meant to be three and half weeks, but I extended it after spending a week in hospital (including ITU) in Cornwall, not letting a little thing like the inability to breathe stop me from having the holiday I'd planned.  It was fantastic, but I suspect that I'm not very likely to camp again as there's a significant lack of electric plug sockets in a tent from which to charge a powered wheelchair.  All the same, I'm thankful for my wheelchair - Noah - because it gives me other freedoms - the freedom of independence in the outside world.  Of course, there are limitations as many buildings still aren't fully accessible, and much of the countryside isn't at all wheelchair friendly, for example, but I can go out, on my own, on the bus, in to town, to the park, along many public footpaths further afield if I go out in the car. I don't have to rely on family, friends or carers to push me in an attendant-assisted wheelchair, or on my lungs for breathing to use a manual wheelchair, or on my balance (POTS) and lungs for walking.  My independence is important to me, and I'm thankful that I have access to a means to maintain that independence as much as is possible.

6.  My mind

Okay, so depression is awful, but depression isn't all that my mind has given me.  I'm thankful that I have the mind I do, because with it I can think things through, I can reason, I can consider, I can be logical, and I can be illogical.  My mind gives me choices and the capacity to make decisions;  it allows me to challenge situations and concepts; it contributes to my creativity; it helps me to recognise emotions and identify why I feel what I do when I do.  Without my mind I would not know that there are things for which to be thankful, and I wouldn't know that I am thankful for those things.

7.  God

The ultimate 'thing' for which I am thankful is God.  Without Him I would not have my mind, my thankfulness, my being, or anything else which deserves thanks.  I thank God for God.

The pit and the monster

I think I've said before how, some time ago, I came to the understanding that depression is a monster that tells you lies.  I've used this analogy a lot in my psychology sessions, and it's come to represent depression itself as a beast.  I've described the experience of depression probably as many others have done - like being in a deep pit.  Whilst it's quite an easy and obvious metaphor, it's also quite useful, because emerging from depression isn't usually (unlike my previous miraculous experience) a change that happens in an instant.  Rather, there is a slow recovery, a gradual relief that can be difficult to see happening whilst you're in the experience.  Using the analogy of the pit kind of gives a scale to the depression ... it means you can sort of describe how far down or up the pit you are; whether or not there are any signs of life in the soil or above the hole; whether or not you can see light at the top of the pit; how muddy the pit is and whether or not it's sucking you down further; and whether or not there's anything around that you can use to get out of the pit.  I also imagine that the vicious beast - monster - of depression lives at the bottom of the pit, and the closer I am to the bottom, the louder and more numerous are the lies it is telling me about myself.

I was talking with my psychologist again during the last session about where in the pit I see myself as being at the moment.  A couple of weeks ago, when I wrote Away with it, I/we thought that I was maybe half way up - things were still very difficult, but there was a bit of light at the top of the pit, and perhaps there was a worm (a sign of life) wiggling a little way out of a hole in the side of the pit.  Talking in the last session, I said that I felt that I'd sunk a bit.  I'm not on the bottom, like I was when at my worst point, but there was no sign of any worms for company, no signs of external life.

I often talk with my psychologist about the things that make me sink in to the pit, how I ended up there, etc, but my homework this week is to think about those things that have perhaps helped me to get off the bottom of the pit; the things that have helped me to ignore/challenge/not listen to the lies the monster tell me; the things that helped me to get as far up the pit as I managed to get before slipping back.  It was suggested that perhaps I might write my thoughts about these things on my blog, and before the end of the session I'd decided that yes, I'd write about it here because, after all, I've shared with my blog readers much of my depression experience.  This might take me a while because I haven't actually thought about it a great deal since my psychology session on Friday as my mum's been staying with me over the weekend.  What follows will very much be me thinking out loud, so if it doesn't make a great deal of sense, that's why.

So, Things that have helped me so far in surviving/recovering from depression:

1.  My psychologist and the sessions with her

S has been a constant for me during all of the distress.  I have felt able to talk to her about anything and everything, sharing my darkest and most frightening thoughts, the true extent of my desperation.  I've cried a thousand tears in front of her, broken down in uncontrollable sobs, and known that I've been safe to do so.  I've trusted S with the most vulnerable and broken pieces of myself and known that none of it would be turned around and used against me (this is in contrast to someone else in an on-going situation, so has been a very pertinent point, and a significant trust).  Unlike the multiple faces of the Crisis Assessment and Treatment Team (CATT), and the unreliable presence of the CPN, S has been there throughout without sessions being cancelled or postponed, and she is one person with whom I haven't continually had to relate the origins of my distress.  Yes, S has been, and remains, vital in this process of defeating the beast and finding a way out of the pit.

2.  Friends

I was terribly afraid of telling my friends that I was in the bottom of the pit and being devoured by the monster (and that's not how I put it to them when I did tell them).  I was afraid because of all that I'd put them through during my previous severe (and very long) depression.  I thought that maybe they'd be too afraid to stick around, not so much afraid of depression, but afraid of what depression has done to me before and how difficult that was for them to watch.  So I tried to keep it from them this time.  I tried to separate myself from them to pre-empt the pain I would feel if they couldn't cope with the depression again and opted to separate themselves from me.  It turned out that all of that was one of the lies that the monster was telling me and got me to believe, because when I did ultimately 'come clean' to them about how desperate I was, they held me in their friendship.  My close friends came to me, sat with me, and took gentle care of the pieces of me that they came across.  They still do.  They text, email, tweet, talk to me on FB, and come round to my flat.  They encourage me to do things with them, to go places, and when I'm not physically well enough to do that, they come round.  One of them has started tidying up my huge back yard for me so that it's a nice area for me to sit in or just to trundle through as my wheelchair access is at the back of the house.  They encourage me to go out with them, meet them in the park for a trundle.  They suggest that maybe they come over to bake cupcakes, just because it's a nice thing to do.  They take me to shops I didn't know about to buy games for my Wii.  One of them has sometimes phoned me in the middle of the night when she knows that I'm likely to be at me lowest, and she has talked with me for five hours, six hours, all through the night, during which time we've cried, we've laughed, we've done the whole spectrum of emotions and covered every subject imaginable and some you might not think about.  They 'keep me safe' in all my insecurities about seeing mutual acquaintances in group situations that terrify me simply because I haven't seen others for so long and I dread the question, 'How are you?'  One or two of those friends occasionally read my blog, and if those friends happen to read this I would like to say a sincere and heart-felt thank you.  You are so very precious, and I hardly dare believe that I deserve such wonderful friends.  Thank you.

3.  Music

I've written a little about playing the piano again, and spending hours immersed in playing the violin again.  I haven't been physically well enough to do any of that for several weeks now, but those were things I was doing when I was a little further up the pit than I currently am.  But they haven't been the only musical things I've been doing.  The choir I helped get up and running last year - Flotsam - is very important to me.  Since being ill with the pyelonephritis again I've been too poorly to go to choir and I've found that really difficult.  Choir gives me time with people (very important when I spend so much time on my own, unable to work, unable to get out much because of chronic ill-health) without having to interact too much with many if I'm feeling fragile.  Choir gives me a place to belong, somewhere I can be a part of something good, a place where I'm the same as everyone else because we are all singing.  Okay, so I can't be the same when they all stand to sing, but I'm kind of used to that, and it doesn't change the fact that I'm still singing just as they are.  Flotsam's choir master is a dear friend who has known me (and I've known, obviously) since I was thirteen.  He has seen me through some of the toughest times of my life, and even if I don't tell him any details, I always feel able to tell him if I'm not doing too well, and that has made Flotsam a very safe place to be.  Of course, music itself can have an emotional effect, as I'm sure most of you have experienced for yourself, and the music we sing in Flotsam tends to be either uplifting or soothing.  Music is also a part of me, something that has always been in my life, and has sometimes been my only way of expressing anything at all.  It allows me to connect with the world - something in the world - that nothing else quite reaches, and it has been a creative outlet for me at a time when I've felt extremely stunted in my ability to creatively express myself in writing.  It's not the same, but it helps.

4.  Mum

During most of my previous deep depression I was largely unable to talk to my mum about any of my feelings.  For various reasons I was angry with Mum, and I closed myself off from her.  It was kind of necessary at the time, but there's been an enormous amount of healing that has gone on between us and we now have a wonderful relationship.  Mum's support throughout this horrible time of depression has been invaluable and constant.  She's phoned me often, but not intrusively so, and during the calls I've been able to tell her a lot of how I've been ... yes, at times I've held back from telling her everything, but in the end - maybe a few weeks down the line - I've been able to share most of those things too.  Mum's been down to visit a few times, which has been very supportive, great company, and has provided much-needed TLC.  Of course, there was also my trip up north to stay with her and J that unfortunately culminated in a hospital admission with pyelonephritis.  Before I took ill, I was having a lovely, relaxed, gentle time with Mum and J, which felt nurturing and lightly refreshing.  It was bad luck that I got so poorly and didn't really get over it while I was away so that it came back almost full-on shortly after getting home.  The goodness gained by staying with Mum was largely erased, unfortunately, except that it helped me with number 5...

5.  Making some decisions

Out of necessity, I'm going to be quite vague here.  Firstly, there has been an on-going situation that has caused me a lot of distress.  I'm not currently at liberty to expand on this for various reasons, but time with Mum, talking with Mum, and several in-depth conversations with my psychologist about the situation have led to me reaching a decision.  I've yet to act on the decision made, but I'm working on it, and even coming to the conclusion that I have has helped.

There is another decision that I'm going to be equally vague about, but concerns something I've thought about a little in the past.  I mentioned it to Mum when I was with her in Edinburgh, and since then have thought about a great deal.  It's probably something for the long-view rather than to implement immediately, but I am beginning more detailed thinking about it, and have decided that I will most likely follow it through at some point.  I think it's a good decision to have made, but will take considerable work.  Anyway, enough of being vague.

6.  Getting out

I've been too unwell with the recurrent pyelonephritis since coming home from Edinburgh to go out much at all.  My days have been pain-filled and isolated as I've lain in bed or on the sofa trying to rest, trying to get/keep my temperature down, watching the clock for when the next antibiotic is due or pain killer can be taken, cuddling the cat whenever he's wanted and sometimes when he hasn't been too keen on it, watching daytime telly, and whiling away time on FaceBook.  Before that I was trying really hard to make sure that I got out at least once a day.  It might just have been to the shop, the park, a trundle around the local streets, or it might have been to town for some window shopping, or a wander along the quayside.  I was avoiding driving anywhere because my concentration was so poor that I didn't trust myself to be safe, which meant that I couldn't take myself off to the coast - a place I usually manage to find some solace.

7.  FaceBook

Okay, so this might sound strange to some, but I've found the contact with others through FaceBook valuable.  At my very worst, when I wasn't able to tell my friends how I was, I didn't go there - I found it very, very difficult to interact with anyone in case I let it slip how I was - but when I did tell folk what was happening, FaceBook helped a lot.  While I was isolated in my depression and by my difficulties in mixing effectively with others, I could roam around FB in the ethereal presence of others online.  I have wasted many, many hours playing Bejeweled Blitz (sic) and Scrabble, clicking on links to You Tube videos posted by others, reading every status update of everyone on my friends list, and looking at millions of pictures of cats.  To those of you who have never experienced depression and have busy, active lives may see all that time on FB as a total waste, but actually it's kept me connected to the world and reminded me of all people I know who are out there.  It's given me something to do, and 'somewhere' to be.


I'm finding it very difficult now to think of other things that have helped.  I'm sure there are more things, but I've been trying to write this list for three hours now and I'm brain-dead.  Perhaps more will come to mind in the coming days, but I have more 'homework' to do ... and it's difficult, so it may be a while until I get back to you.

Progress report

'Progress' isn't really the right term to use as there hasn't been much of it.  Since I came home I've had something of a relapse, and haven't been able to do very much at all.

Earlier in the week, when the fentanyl patch was due to be replaced I thought I'd see how I went without it, thinking that I won't know what progress I'm making if the patch is so effective as to eliminate my pain, or perhaps it's that the pain is no longer a problem.  In a matter of a few hours it became clear that pain was still a problem.  My kidneys were again thumping me in the back, and then I noticed some bladder pain on urinating.  I slapped another patch on and waited for it to take effect, but as the levels of fentanyl in my system had dropped during those few hours without a patch, I had to wait some time for the drug to kick in again.  The pain gradually lessened, but I was still utterly exhausted, and then my temperature started to rise again.

I knew there wasn't a lot of point in phoning the GP surgery to get an appointment to see a doctor as it was the middle of the afternoon, and it's usually fairly impossible to get an appointment if you phone any later that 8.50am.  I rang anyway, on the off-chance that there might be a cancellation, which there wasn't, but I went on the call-back list.  After putting the phone down it occurred to me that, even if I couldn't get to see a doctor that day, I really ought to speak to one as my temperature was back up to 38.7C.  I rang them back, explained to the receptionist that I'd been in hospital, and that things were now deteriorating again.  He suggested the on-call doctor phone me back at the end of surgery.  That was fine by me so I waited.

One of the very good things about my GP practice, isn't just that all the doctors and nurses are very good (and the reception staff/secretaries too), but they also give each patient what time they need, rather than insisting that each patient consultant must be a maximum of ten minutes.  Of course, the downside to this is that the doctors quite often run behind.  Many complain when they have to wait, but personally I don't mind, because I know it's down to the doctors putting the needs of each patient first.  But on this particular day last week it meant that the doctor didn't get to call me back until 6.25pm.

I explained again about having been in hospital with pyelonephritis and how, since being home, I'd had a resurgence of symptoms.  He said that given the history, it was probably safe to assume that the pyelonephritis was back/hadn't ever gone away properly, and said to resume the antibiotics.  The problem was that the surgery was officially closed, the pharmacy was due to close any moment, and I was too ill to get up to the surgery to collect the script anyway.  He asked if anyone would be able to collect the script for me, but I didn't think there would that evening.  However, someone may be able to the following day.  The doc told me to keep a close eye on my temperature and if it rose much more overnight I was to seek medical help, but otherwise he'd leave the prescription at reception for me to get in the morning.

I have a great friend, JM, who also happens to be a GP, though not at the surgery I'm at.  However, he knew I'd been ill and was struggling a fair bit at home.  Just as I put the phone down from my own GP, JM called me to say he was just leaving work and could he drop round on his way home to check me over.  Bless him.  He came, he wasn't too impressed with the bedraggled heap that lay before him on the sofa, and I told him of the conversation with my GP.

At 8.25 the following morning, JM rang my doorbell.  He'd left a specimen bottle with me the previous evening, suggesting that I drop a urine sample round at my GP surgery, and this morning he'd come round to collect it and take it to the the surgery for me (that's friendship!).  Having dropped off the sample, he then picked up the prescription my doc had left at reception for me, went to the pharmacy, and was back at my flat by 9.10am.  I downed the first of the antibiotics and took myself back to bed.

I was rather hoping that the antibiotics would do their stuff very quickly and that I'd soon be better, but it hasn't worked like that.  Four days in to this course of antibiotics and my temperature is still going up to 38.2C fairly regularly, and on Friday it was 38.9C.

I am completely wiped out.  I have no appetite, I feel nauseous when I do eat, and at random other times too.  I have been out to a couple of hospital appointments during the week, but have then been knocked for six and unable even to get dressed.  Each day, usually in the afternoon, I've eventually managed to scrape myself out of bed in order to slop myself over the sofa, where I've stayed till late evening when I've duly scraped myself off the sofa and slopped back on the bed.  Time is passing, but I don't feel as though I'm making much progress at all.

JM has been keeping in contact via text, and has dropped by several times either to see how I'm doing and to leave me some fresh milk, juice, and fruit (he is ever so good to me).  Today we had a brief text conversation and JM suggested I see my GP this week because the antibiotics really ought to have me feeling a lot better by now.  I might try to get an appointment tomorrow, or I might see if the doc will do another phone consult with me, which would save me from having to drag myself to the surgery while I feel so crappy.  I'll see.  I have the CPN coming round tomorrow afternoon, and that might be quite enough for one day.

I am absolutely fed up with this.  I'm sick of being poorly and being exhausted.  After so long with such terrible pain, it now gets to me if I even have just a little niggle - I just can't be bothered with it and don't have the patience for it.  Most of all, this prolonged physical illness with pyelonephritis is not helping my mental health in the least.  I don't have the strength, energy, mental or physical capacity to do anything that might be at all helpful in easing any of the depression symptoms, and the pyelonephritis itself actually makes me feel more depressed.

I just want to be better.  I want to be physically better, and I want not to have this horrible depression hanging over me.  So far, this year has be crap.

Away with it

I haven't been away since Christmas.  I was meant to be going up to Edinburgh to stay with my mum and step-dad over Easter, but when the time came, I wasn't able to concentrate enough to drive that far safely.  Actually, I was barely driving at all because I didn't feel it was fair on other road-users for me to do so at the time, such was my lack of concentration.  In the end, Mum and J came down to me for a couple of days over Easter, and Mum's been down to stay with me a couple of times on her own since then too.  At last, I have made it up north to stay with them.  To be honest, my concentration still wasn't very good on the drive up, but I don't think I was dreadfully unsafe (I wouldn't have come if I thought I would be).  Thankfully the roads were pretty quiet too as I came up in the middle of a bank holiday weekend (Sunday), and it was a fairly easy run.

My sleep is still very erratic, and I don't know whether it was just the change of scenery or what, but last night was very unsettled.  I felt all wrong.  I can't really describe it ... just sort of out of place, which isn't something I usually feel at Mum's.  I think perhaps it's just the weird way that things are at the moment, but it was most unnerving, and it contributed to me not getting to sleep until after 6am.  Of course, this meant that I then didn't wake up terribly promptly, and eventually Mum woke me with a cuppa at 12.30pm.  There's something very lovely about being brought a fresh cup of tea in bed, don't you think?

The good weather seems to have left Edinburgh as soon as I've arrived (typical!) and today has been very blustery and a tad chilly.  Not that I went outside to experience the chilliness - I took J's word for it when he popped to the shops.  No, I have done very, very little today, almost to the point of beginning to go a little stir-crazy.  I have, though, played the piano.  Mum has a wonderful baby grand piano in the living room, which, for some reason, I've shied away from playing for the past couple of years, perhaps just because I haven't been playing much at home either.  However, I have played a little more at home recently, so I decided to bring some music up with me in case I got itchy fingers, especially as I don't have my violin with me.  I spent an hour or so this afternoon sight reading some Scarlatti sonatas, and playing one that I used to be able to play, but which hasn't seen the light of day for maybe seven years or so.  That one's the Sonata in B minor (in case you're interested), and it's odd because although I haven't played it for such a long time, I have 'sung' it in my head a huge number of times during these past difficult months.  Actually, it's a piece that has often come to mind at a variety of different points in life during those years that I haven't played it.  I've no idea why.  Anyway, I can't say that I brilliantly today, by any stretch of the imagination, but my fingers did seem to remember most of it - just enough so that at times I would forget to read the music and I'd then very quickly forget where I was up to and lose my place.  I have to say, it makes a big difference playing a proper piano to playing my digital piano that I got 21 years ago.

There are few things at the moment in which I can really lose myself, and from which I gain solace, but music is, at last, providing a bit of both again.  I still don't have the right words to do the writing that I really want to be getting on with, but I am reassured by the presence of creativity in a different area, perhaps a neighbouring area of brain.  That's what I'm hoping, anyway, and it does kind of feel like that.  It feels like the music might gently tickle the writing 'muscles' and nudge them in to action.  I know that I need that to happen, but I'm also just trying to take comfort in the creativity of the music itself.  I can lose myself in music, and whilst listening to music can achieve that to a degree, it doesn't satisfy the fidgetiness of emotional upset/distress.  In fact, when I'm depressed I find it very difficult to sit quietly and just listen to music.  I get so much more from actually making music at these times, and I get different thing from making music with the violin, from doing so with the piano, or by singing.  Although it's still very hard to feel very positive about anything very much, I can tell that the slightly alien feeling that's been nudging my insides since doing more music again has been the feeling of pleasure.  I have to keep reminding myself that that's what the feeling is so that I don't get frightened by it and run away.  I know that sounds odd...

So tomorrow I may well have another tinkle on the piano while Mum's out at her painting class and J's out at his bridge class (yes, they've taken to retirement now ;o) ), although that does rather depend on my managing to get to sleep at a relatively reasonable hour (it's already 12.45am) and getting up in the morning.  Mum will get back home from her art class soon after 1pm, and I'm hoping that, after we've had a little lunch, we may then go out to the countryside for a bit.  The weather forecast isn't fantastic, but it's better than Wednesday, and it would still be lovely to see the hills and the loch at Flotterstone.

I'm not up here for long - just a few days - but maybe this short time away from home will help.  Sometimes a change of scenery can interrupt the monotony of everyday 'life' when you live alone, can't work, aren't studying, and aren't well enough to do all the things you think you might if you didn't have the 'usual' commitments of family and work.  Sometimes feeling constantly exhausted and poorly isn't quite so miserable when I'm in a different place or seeing people - friends or family.  Sometimes, a bit of time away can help me through the relentless battles with my health.  That's what I'm hoping from these few days, though I'm not spending too much energy on hope in case I'm disappointed.

I'll sign off now.  See if I can shut my mind down and get some rest.  See if I can sleep tonight so that I can get up in the morning.  I will listen to the silence around me and hope it drowns out the noise of my thoughts.

Shuffling

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

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

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

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

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

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

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

Beyond the CATT

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

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

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

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

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

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

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

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

Trauma

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

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

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

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

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

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

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