Relentless

I was discharged from hospital in Edinburgh on 9th April - earlier than I would have been had I been going home, but I went from RIE to my mum's and stayed with her and J for ten days. I'd have liked to stay longer, but I had to get home for various medical appointments - blood tests for immunology, blood tests for anaemia, an appointment with the GI surgeons, an appointment with my GP, an appointment with my psychologist...the list goes on.

I've had five or six weeks out of hospital, but then a week ago I woke up one morning and I was wheezing again. No warning, no apparent reason, no protracted relief from nebulisers. I persisted. I took things easy and didn't push myself. I kept a close eye on things. My lungs didn't ease up, and on Thursday I decided that I ought to get checked over by my GP. When I rang the surgery it turned out they were closing at midday for staff and doctor training, and it was already 11.40am (I'd had the gas man in changing my meter), so they had no appointments, but I mentioned to the new receptionist taking my call that my breathing wasn't very good and she said the doctor would call me. Five minutes later the lovely Dr T rang, said she could hear me wheezing, and that she would visit me at home. I tried to insist that I'd be okay to trundle to the surgery in my wheelchair, but the doctor said she'd much prefer to do a home visit. She knows me well. Dr T arrived within an hour, did a quick examination and assessment and said that she thought I needed to go to hospital, especially given that I was poorly enough to need a home visit. I applaud her stealth and sneakiness with that.

There were no beds on my usual ward at Freeman Hospital so I had no option but to go to A&E at RVI, and from there to the Emergency Admissions Unit (EAU). I was put in the monitoring bay - the part of EAU where the sickest patients go. It has a high turnover of patients with folk being moved in and out at all times of day and night. Lights are always being turned on and off as patients are attended to and tests are done. Monitors alarm constantly. Staff talk. Patients are ill. The patient who was next to me for twenty four hours shouted aggressive demands incessantly. I couldn't breathe and I was exhausted.

I came here on Thursday and it is now Sunday. I am still not breathing easily and I am utterly, utterly exhausted. At the insistence of one of the night shift nurses last night, who could see that the Monitoring Bay environment was doing me no good, I have been moved to a slightly quieter bay in the unit, thank goodness. But I am still exhausted. I am beyond exhausted.

It is only May and so far this year has been dreadful. This is my third hospital admission of the year, each one a battle for breath. No time to recover properly between admissions, and I'm done in. I can't keep doing this. I don't want to die, but I can't keep on like this either. I don't know what the answer is, and this isn't about feeling sorry for myself. I just don't have the strength, stamina, and energy any more to 'live' like this. I've run out of me.

Overwhelmed

Sometimes I want to write on my blog, but am too busy to give it the time it needs or I get distracted. Sometimes I need to write on my blog, but I get tangled up trying to work out how to write what I need to say instead of just sitting down and saying it. In recent months there has been so much to say that I've become overwhelmed by the enormity of it so have said nothing instead of everything. That makes for a redundant blog, which is not what I want. I want to write, and I want to write here. I want this place to be useful to others and to myself. The only way I can do that is to get to it and write, so please bear with me while I try to get back in gear.

I can't, at the moment, give a big update on all that I'd like, and it's probably best done in batches anyway. Right now I'm in hospital in Edinburgh, having come up to stay with Mum and J for Easter and it all going terribly wrong because I got a cold. I'm not in the best state of mind, feeling shocked and stunned at how ill I've been and how rapidly I deteriorated. I am overwhelmed by it, and kind of need to talk about it, but also don't quite know how to yet. I had only been out of hospital at home in Newcastle for two weeks and had come to Edinburgh for some recuperation. No chance of that with only one night at Mum's, so I began this fight for life with minimal reserves. Now I feel utterly depleted. Even the skin on the soles of my feet is exhausted, so while I try to get back to writing my blog as I want and need, please bear with me. It's near impossible to start a journey of a thousand miles even with a single step when it almost too much to think about putting your foot to the ground.

Longer than expected

When I wrote my last post I fully intended to write again very soon, but for one reason or another I haven't been able to.  I've written my next post in my head several times, with it being different each time because of what's been going on at the time, but because of that I've also rather lost track of how long it is since I actually managed to post anything.  At last I'm here, albeit two and a half months since my last posting.

So what's been going on for me?  Well, it's been the summer and traditionally a time when folk go on holiday.  I haven't really been on holiday as such, but I have been up to Edinburgh to stay with my mum on two occasions, each time for about a week.  I've taken the kitten - Isobel Artemis - with me each time and she's had no problem with the car journeys or getting used to a different environment, and has really loved darting up and down the stairs at Mum's.  I don't have stairs in my flat, so Isobel's first encounter with stairs was at Mum's, and each time we've visited she's had great fun galloping up and down them, sounding like she's wearing boots.  She's five months old now, and although young for it, she was spayed last week, mostly because she's desperate to investigate the outside world, but I don't want to risk her getting pregnant.  She's healing well, and hasn't had any problems at all, which has been a huge relief because I was worried that she was a little too young, even though the vet said she'd be fine because she's quite 'long for her age'.  I am completely besotted with Isobel and she's giving me so much pleasure and delight.

At the middle of July/beginning of August I spent two weeks in hospital with my asthma.  I'd had a brilliant couple of days down in London for the Monty Python show and then drove back home on the Thursday.  I wanted to be back home in time for choir as it was the last Flotsam rehearsal before the summer break and we were singing at the wedding of a couple of choir members at the end of August.  In the end I decided to go straight to Flotsam so that I didn't have that post-drive slump at home and have to go out again almost straight away, but then as I was approaching Gateshead I realised that I was going to arrive a bit too soon so I decided to stop at the Angel of the North.  I was absolutely fine when I arrived and when I got out of the car, and fine when I got the wheelchair out of the car and had a little trundle around, but very quickly and suddenly I became extremely ill.  I couldn't breathe and my chest felt incredibly tight.  I got out my nebuliser and started to use it, but I could feel myself going - the world was going black and I was about to pass out.  I knew that if I passed out then I would die.  I could see an elderly man sitting on a nearby bench, watching me, looking concerned, but he didn't approach me or ask if I needed help, and then he started to disappear into the encroaching blackness.  Just as I was resigning myself to dying under the gaze of an angel, the drugs in my nebuliser started to kick in, the blackness started to dissipate, and my breathing started to ease.  For the first time ever I went from being absolutely fine to incredibly ill to fairly okay again in one 'sitting.'  It was a huge relief, but also very confusing because I didn't know how to deal with this new situation - would I continue to be okay?  Should I go to hospital?  Would I be alright if I went home?

When I got back in the car I looked in the mirror and could see that I was far from being the right colour, but my breathing did feel a lot better than they had done and I thought I was probably okay to drive ... although, in retrospect, I probably ought not to have done.  I had been very scared by what had just happened and was feeling rather shocked by it, all of which probably contributed to my decision to leave getting checked out until the next day.  In the meantime I decided that I would go to choir as planned because it was probably safer for me to be with people in the immediate aftermath of this than to go home and be alone all evening.

It took a long time - a good couple of hours - for me to get back to being the right colour, and during choir I was sweating a great deal and not feeling well, although my breathing remained okay given what had occurred on the way.  Perhaps because of the fear of the attack at the angel and being so close to passing out, I didn't tell anyone at the time quite how poorly I'd been (it would be like admitting it to myself), but I did go straight home afterwards rather than join others in the pub for an end of term drink.  And when I got home I was exhausted.

I had every intention of phoning my GP the next day to get checked over, and I set my alarm to wake me in time to phone for an appointment, but when morning arrived I was too tired to move.  I tried to wake up, but I couldn't.  My head didn't feel right.  In fact it hadn't felt right since I'd almost passed out in the asthma attack - it felt thick and heavy and I couldn't really think straight.  I went back to sleep, telling myself that I'd phone the doctor soon, but as the day progressed I wasn't able to stay awake long enough to make the call, and I was fumbling around doing my nebs practically in my sleep.  I don't know what happened to the day, but it disappeared, and the next thing I knew my carer for the day was calling my name from the hall.  I hadn't heard her ring the bell, knock on the door, or even phone me up, so she'd got the code for my keysafe and let herself in.  I managed to explain what had happened, but I still wasn't right, and she said that I seemed a bit confused.  I said that I wasn't, that I was just tired, but actually I think I was confused.  The carer stayed a while, made me a drink (I didn't want anything to eat), and phoned the office/on-call to tell them what had happened and how I was, and then she had to go.

I can't remember much about that weekend, except that my head didn't feel right and my lungs were slipping again.  My GP surgery is closed at weekends and I don't like A&E (plus, I didn't think I really needed to go to A&E) so I was hanging on for Monday.  When Monday morning arrived I managed to wake up to make the call to the surgery, got an appointment with one of the doctors, and went straight up to the surgery.  Part of me must have known that I'd end up in hospital because I had checked my hospital bag was ready, but part of me was still in denial, or maybe not thinking properly, so I didn't gather my meds together or take anything with me to the surgery.  The doctor was lovely, but clearly concerned so had me admitted to my usual ward at Freeman Hospital via an ambulance straight from the surgery.

At first the docs on the ward didn't do very much for me, but I could feel my lungs getting slowly tighter, and the nurses who know me well were concerned for me.  My consultant was off (his first sick leave in his whole career), and the registrar had opted to wait and see how things went with me before doing anything proactive, which was tiring and frustrating for me.  I didn't see the point of being in hospital if they weren't going to do anything different from what I could do and was doing at home, besides which I could feel my lungs getting slowly tighter and tighter.  The following day they agreed that the time had come to intervene and they put up the aminophylline infusion, which slowly, slowly did its thing and I started to get better, except that then the docs were too eager to get it down, despite my telling them that I need to be weaned off it very slowly.  It all went pear-shaped and I ended up back on it very soon after it'd first come down.  This time they kept it up until I was more stable, and as far as I remember it was up until after my consultant came back to work and could oversee the whole the process.  Eventually I was well enough to be free of the aminophylline infusion, and I could start to get some better rest before going home.

I was discharged two weeks after being admitted.  The general consensus was that there was most likely something at the Angel of the North to which I'm allergic - a pollen of some kind, probably - and that the confusion and headaches had been due to the lack of oxygen to my brain when I was so acutely unwell.  These seemed to get better with time and rest, although I was still extremely tired for about a week after I got home and did very, very little other than sleep or lie in bed for my first week home.

Since then my lungs have settled back into their usual state of unpredictability, but I've got back into life, taking each day as it comes.  I've been up to Edinburgh once since then and had some Mum TLC, which is always good for recovery from poorliness, and I've seen various friends at various times too, which help my spirits and remind me how lucky I am to have such lovely people in my life.

There have been a few other medical things going on throughout the summer and recent weeks too, but I'll post about them separately because otherwise it might be overload for both me and you.  Besides which, I've just noticed that it's almost 1.40am and I really ought to take myself to bed if I'm to have any chance of seeing any of tomorrow morning, which I'd like to do as I've been enjoying the sunny September weather.  So for now I'll bid you goodnight and I'll take Isobel for a cuddle in bed.

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.

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.

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.

Bits

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

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

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

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

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

Difficult

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

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

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

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

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

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

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

Three and a half weeks (part two)

Physically, I began to mend from the asthma attack, but emotionally, I was very shaken.  I hardly slept for days, too afraid to turn the light out, have the door shut, or relax enough to let sleep take over.  I had at least to be able to hear the nursing staff or anxiety would swell inside me.  The events of the attack, of my time in A&E, EAU, and ITU played through my mind again and again. I repeatedly relived the trauma, and the lack of sleep meant I had even less energy either to fight it or deal with it.  I had a total of ten hours sleep in the first eleven days of the admission, many nights not getting any sleep at all.  'Tired' does not describe how I felt.  Neither does 'exhausted.'  It was torturous.  Even when I did manage to snatch a little sleep, I dreamt about what had happened and never awoke feeling rested.

Although still completely worn out and sleep-deprived, by the second Saturday of my admission I was beginning to feel a little better.  Not great, but my lungs were easing and I began to think that maybe it wouldn't be too long until I got home.  I was well enough to have the catheter removed, which had been in since I'd arrived on ITU, and a little after midnight on that Saturday/Sunday the nurse took it out.  It was a relief because I'd often been able to feel it in my bladder, lightly scratching my insides.

Catheter-free, I managed to drop off to sleep sometime around 2 am, but I woke again at 5 am.  I didn't feel right.  I got up and went to the loo - my first reclaiming of toilet rights - and then I knew that things weren't right.  There were all the signs of a UTI: pain, cramping, smelly urine, malaise distinct from the sleep-deprivation.  I told the nurse.

By 8 am I was getting cramping in my bladder and abdomen at times other than when I went to the toilet, and then I felt like I'd been punched in the lower back.  It was getting rapidly worse.  I needed painkillers.  I had very few inner resources to deal with the pain and I couldn't help but cry with the pain.  But that was nothing.  Within a couple of hours I was in agony.  Everything kept seizing up.  Spasms starting either in my bladder and working their way up to my kidneys, or starting in my kidneys and working their way down to my bladder.  The most intense pain I've ever had, nothing touched it, and all I could do was cry out in agony.  I was shivering with cold, but my temperature was up near 39C so the nurse removed my blanket, opened the window, and put on the fan.  She took a urine sample, sending some to the lab for analysis after dipping it on the ward first and finding that it showed 'very positive for everything that shouldn't be in it.'

I spent the next thirty hours or so crying out in excruciating pain, my body lurching from one spasm to the next, feeling like I had razor blades and ground glass in my bladder, and someone pounding on my back with a baseball bat.  I had a severe case of pyelonephritis.  The doctor started IV fluids and IV antibiotics, regular and 'as required' painkillers, and antispasmodics.  Nothing worked quickly, and all I could do was lie on my side calling out in pain.

Then the weird obsessions and hallucinations started.  First of all it became vitally important that I remember the name of the cat in the James Bond films.  I couldn't remember.  I had to remember. It was vitally important that I remember.  After hours and hours of racking my mind it came to me.  At least, I thought it had come to me.  I sat up and called out 'Odd Job'.  Of course, now I know/remember that this isn't the name of the cat, but at the time it satisfied my necessity to remember it.  Then I kept becoming aware that I was chuntering to myself.  I couldn't tell you what most of it was, though I do remember lying facing the wall saying, 'It's disgusting. Really disgusting.  Dis. Gus. Ting.

During the Monday I was sure there were two three-and-a-half-foot tall cockerels in the corridor.  It didn't surprise me and they didn't seem out of place, but they were really noisy.  They shouted out incessantly: 'COCK-a-doodle-doo!  COCK-a-doodle-doo!'  I've since worked out that this was some weird interpretation my brain was making of the nurse-call bell, but at the time it was two over-sized cockerels that wouldn't shut up.

That night I got scared, really scared.  I couldn't see it, but I knew that somewhere there was a mermaid for which I was responsible.  I was being told to feed it fish.  I couldn't do it.  It seemed wrong.  It seemed like cannibalism to feed fish to a mermaid.  I didn't know what the consequences would be of refusing to feed fish to a mermaid, but I decided that I'd have to bear them.  And then I wondered if mermaids actually did eat fish because, after all, big fish eat little fish, so maybe I would just be starving the mermaid for no reason.  The ethics of it all bothered me greatly, and I was afraid of what would happen to me for refusing to do what I was being told I must.  I was genuinely scared.  I know it sounds funny now.  I know it's laughable.  I know that it's ridiculous to wish that I'd seen 'The Little Mermaid' so I knew what Ariel had eaten.  I know all that now, but at the time I was afraid.  At the time it was far from funny.  And because I remember that fear and anxiety so clearly, the humour of it is detracted for me.

Although it was all very real, I gradually came to realise that maybe it wasn't quite right.  My brain felt wonky.  It was the high temperature and the toxins in my blood from the kidney infection, but of course I didn't know this then, and I was scared.

Over a period of days, the weird thoughts and hallucinations faded, and the pain began to ease a bit, but it was completely exhausting and I was drained.  I had nothing left.  I cried.  My tears didn't taste right.  No salt.  I still cried.  In fact I was so completely done in that I didn't have the energy to stop my tears.  I wasn't dead, but I wasn't alive either.  I was in a state of existence.  I have never felt quite like that before.  It wasn't like the feeling of existence in depression ... it was deeper, physical, entire.  Never in my life have a felt like I had absolutely nothing, that the only 'thing' I might have is God.  Never have I been so physically and emotionally crumpled that I didn't have the energy to hold myself before God and ask for his mercy.  I was entirely reliant on my friends to hold me up, to pray for me, and for God to see their faith and have mercy on me because of it.  I sent a text to friends at church asking them to pray, telling them, 'I need the strength of Lazarus when I have the strength of a worm with no wriggle.'  I was broken and crumpled.  I was a heap.  I had nothing and could do nothing.  I really didn't know if I had the energy to live, or if I did live, had I the energy to get well?  I lay in the bed, tears cascading down my face, trying to accept that I was completely dependent upon God's grace, knowing that I could offer Him nothing, and feeling completely devoid of anything.

Very, very, very slowly I began to surface.  A combination of the medications and my friends' prayers saved my life.  Again.  But recovery was slow, and it took a long time from there to get well enough to come home.  Eventually I did, but in truth I was still a way off being well.  I'm still not 100% physically, and I'm far off 100% emotionally.  I'm still exhausted, and I'm still not sleeping well.  If I'm honest, I feel traumatised by the whole experience, and it's perhaps more difficult because part of me feels as though I should be used to this kind of thing by now.  I'm not used to it.  I don't think I ever will be.

Double dip

I've been too ill to post. I was beginning to recover somewhat from the asthma when I sufdenly got extremely poorly with a severe kidney infection. I'm coming through that at last, but I have no energy at all, and no reserves to draw upon. I promise I will do a full update when I can, but at the moment I haven't got either the physical or emotional strength. Hopefully I will do soon.

Which way?

I'm struggling with my lungs.  I've been struggling on and off since the beginning of the year, but it's getting worse.  Getting to sleep is a real problem, and once I do eventually get to sleep I keep being woken with a tight chest and wheezing.  I'm tired from it and tired of it.  I'm not yet needing to go to hospital, and there's still a chance that it might improve ... or perhaps that's wishful thinking.

Last night was bad.  This morning was bad.  The early afternoon was bad.  I spent the day in bad until 6pm, and then only migrated to the sofa in the sitting room to watch telly and to be up when W came round to say hello.  This evening has actually been a little better, but I'm still wheezing despite all the nebs.

I have a horrible feeling about this.  I have a slight panic whirling around inside, as though my body is preparing itself for an assault, a fight.  The night before last I was bradycardic with a pulse rate of only 48 bpm, which I've noticed often happens a little while before a big asthma attack.  I don't know why it happens, and neither does my consultant, although he was interested to hear about it.  Because of this, I'm not really sure whether or not to take the ivabradine that I'm prescribed for POTS as it reduces my heart rate (that's it's purpose).  Most of the time I still need it, and I get very symptomatic with a multitude of symptoms if I don't take it, but should I take it when there's a chance of periods of bradycardia?  The other thing to consider is, that when I'm in the throes of a severe asthma attack, conversely to this pre-attack time, my heart rate can go extremely high, which is also dangerous.  If I take the ivabradine as prescribed then my heart rate doesn't usually go to the high extremes it will without it, although this reduced tachycardia often confuses medics in the emergency situation as tachycardia is a symptom of a severe asthma attack.  It's all so complex.

As for what I'm going to do about my lungs, I don't know.  I suppose my plan is as always and to see what happens, but I hate this waiting, and I hate the exhaustion that comes with difficulty with breathing.  It consumes everything, because while I can do other things, at least part of my mind is always occupied with the act of breathing, which is exhausting in itself.

I saw the GP last week about the vitamin D preparation issue (I'm now waiting for a phone call from the GP surgery's pharmacist).  Even though I go to the surgery in my wheelchair - Noah - I like to walk from the waiting room to the consulting room.  When I did this last week I had to take a seat and a breather before I could speak to the doctor about why I was there.  We didn't talk about my breathing at all, not that I really saw any reason to as my GP can't do anything more for me until I need an ambulance, or in the event of an infection he can prescribe antibiotics.

Last night I thought that I had a high temperature, but it was only 37.4C, which is up a little, but nothing to worry about, and I don't think I've got an infection.  Saying that, W wasn't quite so sure about that when she came over this evening ... She also reckons I'll end up in hospital fairly soon.  She might be right, though I'm hoping otherwise.  Am I being unrealistic?

I don't know.

I may be seeing a doctor of some variety in the near future :o(

Full of busy

Since I got back from Edinburgh I've had a very busy time, which is why I haven't been around on here, but I promise I will try to make time for blogging again.

Last week was my first week back at university after the Easter holidays, and this term I have three modules for my MA running concurrently.  Two of them only have a few weeks left, but they both then have assignments that need to be written.  One of these modules has two pieces of work, but the first is only a short piece of 750 words - a review of an event - and I've done that already.  However, I do need to seriously start working on the longer essay.  I do have a bit of time till it's due in - 6th June - so I'm trying not to get stressed out about it.  The problem is, though, that I can never be sure when I'm going to end up back in hospital, so I can't rely on having all the time until the essay's due in to actually write it.  Alongside that, there're are also the other two modules, and whilst I've done the first draft (and a couple of redrafts) of the piece I'm doing for the novel writing workshop module, there's still a bit to do for it, and there's the entire piece for the Writing for Children module.  I've only just started that module and as yet have only a very basic idea of what I'm going to do for it. I'm looking forward to getting stuck in to it, but it's going to be a challenge, I know that for sure.  The assignment for Writing for Children is due in on 11th June, so you can see that I have a lot to do at the moment.

So I had three classes last week, and each class is two hours.  That might not sound like much, but it's hard work when you're doing it alongside life with POTS and chronic severe brittle asthma, and although I find that writing and studying sustains me, the effort of going to classes can be exhausting.  Overall, it's a great thing, which is why I keep on doing it, but it also means that I'm constantly battling with the conflict of wanting and needing to study/go out, and wanting and needing to rest.  Last week was a week when I couldn't do as much resting as I needed, and consequently I spent a lot of the weekend recovering.

Aside from study, last week, I also had my assessment appointment with the health psychologist.  I was nervous because I didn't want it to end up with the same outcome as when I saw the psychologist at the difficult asthma clinic.  As I've said previously, that concluded with the psychologist giving me a verbal pat on the back for having come so far since I saw a psychologist in the department years ago, and then basically being sent on my way.  This time I needed the psychologist to understand that what I'm dealing with now is a whole lot of different things from what I was dealing with nine years ago.  I needed to get across that the issues I need help with at the moment are issues about now, issues to do with my health and how the lack of health is impacting on my life, the upset of that, and the difficulties of adapting to ever shifting boundaries of limitation that my health is imposing.

The psychologist I saw wasn't someone I recognised, but then it is nine years since I was last going to the department regularly so it's not surprising that some staff have changed.  However, as I've taken part in extensive therapy before I wasn't afraid of actually talking to the psychologist, and found that I was quite easily able to open up and talk to her freely.  I have to admit that I was very surprised at how emotional I got when I was talking to her.  Most of the time I try just to get on with my situation and my life, making the most of what I have, but having the opportunity to talk to someone impartial about all the upsetting things made me very tearful.

One of the things I want to have the chance to talk about is the loss of my hopes and dreams.  I had many.  I've lost most of them.  I've made new dreams and have different hopes, but they don't stop me from grieving the loss of those that I had, and those are things that I need to be able to share and come to terms with.

It was a productive appointment.  As far as a psychology appointment can be good, it was, and I really felt that psychologist I saw got a handle on the issues I'm dealing with and understood their far-reaching consequences.  All through the appointment, though, I was wondering if I was touching all these sensitive issues only to have the psychologist turn around to me at the end and say that she couldn't help.  However, much to my relief, she said that she thought the referral was completely appropriate and that she did think the department would be able to offer me some input.  It may not be with her, but if it was to be with one of her colleagues then she'd pass on everything I'd told her (she took notes while we talked), and it'd only be with her colleague if it was going to be quicker for me to start with them than with her.  Unfortunately all that can be offered is six to ten session, but she assured me that should I need more from them in the future then my GP could re-refer me.  It's a shame that there isn't any on-going support these days like there used to be, but this is a lot better than nothing and hopefully it'll give me a bit more emotional strength to deal with what I have to.

Now the other thing that I did last week, that is totally different from any of the other stuff, is that I had a birthday :o)  I have lived another year beyond my life expectancy, although it's been a challenge to get through at times, as you know.  My birthday was on Thursday, so a university day, and a full one at that with two classes - one in the morning and one in the early evening.  I took a cake into my first class of the day and shared it with everyone, which made it all very jolly, and everyone's papers very chocolatey ;oP  Between classes I met with W and we went to the cinema to see 'The Pirates: In an Adventure with Scientists'.  It was great fun, light-hearted, and just what was needed for an afternoon film showing on my birthday.

On the Friday evening I went to Gibside.  This is a National Trust property on the edge of Gateshead and County Durham.  It's a lovely place, and somewhere I enjoy going whatever the weather, which is just as well because the last couple of times I've visited it's either been snowing or raining.  It was raining on Friday, but it didn't matter.  Every Friday between 6pm and 9pm they keep the walled garden open while the rest of the grounds are closed, and in an area next to the walled garden they have picnic tables and log burning braziers in a beer garden.  They serve beers from a local brewery, Fentimans soft drinks (also made locally), cakes, snacks, and ice-creams.  They're all sold from a little hut, which unfortunately isn't directly wheelchair accessible, but when they saw that I was sitting out in the rain they came and said that if I wanted to go inside they'd open up the main shop as there's a way through that to the rest of the hut.  As it was I was fine because we were sitting under a huge picnic table parasol, and not far from one of the braziers so it wasn't too chilly.  The rain also eased off a fair bit while we were there and at one point we had a gorgeous double rainbow.  I'd post a photo of the rainbows except that I haven't actually downloaded them onto my computer yet.

I'd invited a fair few people to join me at Gibside, but I left it a bit late to ask, and actually a lot of folk were away at various different places.  However, several people were able to come and I think all had a good time.  I know I did :o)  I don't think any of those who came had been to the Gibside beer garden before, but I think it is somewhere we might all end up again, though perhaps on a slightly less soggy evening.

As I mentioned before, I didn't do a huge amount at the weekend as I was recovering from the busy week I'd had.  This week has so far seen me back at university, doing some of the homework I've had from university (I still have some to do), an appointment with the physiotherapist at the hand clinic, two trips to the dentist as I had a filling fall out on Friday afternoon, and a quick visit to ward 29 for a portacath flush.  Not exactly a relaxing or fun-filled time, but all necessary.  I still have another two classes at university to go, more homework before tomorrow afternoon's class, and a follow-up appointment with the surgeon at the hand clinic.  Thankfully, I have a nice day with W planned for Saturday, so that will redress the balance somewhat :o)

Right then, I'd better get myself to bed or I'll never manage to get myself up in the morning in time for my class, which this week is an hour earlier than usual as the tutor has to go and host an event at the Hexham Book Festival in the early afternoon.  I wish her luck, but I so wish I could have that extra hour in bed ;o)

Home again, home again, jiggety jig

I made my escape on Tuesday last week, but haven't got around to posting until now because I've been getting my bearings again and settling back in.  It takes a surprising amount of energy to come out of hospital, especially after two admissions in such quick succession, and no real respite of any kind in between.  Hmmm, come to think of it I should probably retitle this post as 'Home again, home again, floppety flop.'

It's good to be home.  It's good to be surrounded by my own belongings and to have the cat give me cuddles and purrs.  It's good to have my own space and not have an institutional timetable running my life.  It's something of a relief too not to know what my blood pressure is, or my temperature, or my oxygen saturations, or my respiration rate, and it's good not to have to score my pain on a scale of 0-10.  Instead, I live in blissful ignorance of all these things and get on with what I can of living.  The only trouble being that I'm completely knackered and not completely well.  In fact I was back at the GP's on Friday, and in a bid to stave off a resurgance of the bugs he's throwing another week's course of antibiotics at them.  I think they're working, and I'm feeling less lurgified than I was at the end of last week.

Despite all the pleasures of being back at home, I have to admit that I'm struggling a little emotionally.  I think some of this is post-infection and the aftermath of pneumonia, but there's also the whole thing of getting my head around having been so poorly yet again.  It's draining - emotionally and physically.  I am completely worn out, and yet I'm trying to get on with what I can of living, so I'm back at university already (I went back on Thursday), and I've a fairly busy week this week with seeing family (my brother M and his family are coming up for a few days from tomorrow), as well as test-driving a couple of WAVs, sorting out missed hospital appointments, and trying to make time and find the energy for some writing.  It's too much really, and today I have somewhat resembled a heap of misery and grumpiness for most of the day. Actually, I was doing okay first thing, at least I thought I was, although I could feel all the mess not too far below the surface and was trying to ignore it.  Then my mum phoned to see how I was doing and all of a sudden I dissolved into tears and spent the next 45 minutes being a gibbering wreck on her.  Most of the rest of the day has been much the same ever since, only it got a little worse when my carer didn't turn up this evening with no call.  W came to the rescue, came round, and cheered me up just by being here, even though she had to bring her poorly guinea pig with her and he died while they were here :o(  Very sad.

So yes, it's a bit of a mix and I'm rather lacking in jiggety jig, but all in all it is good to be home, and I'll work my way through the emotional debris somehow ... in time.

Horrible hodpits

Today has been a miserable day.  A very fed up sort of a day.  Today I have been well and truly stuck in the hodpits.  Physically, things are slowly improving and the consultant is keen to try to get the aminophylline down tomorrow morning.  I don't feel fantastically stable, but I do feel better than when we tried to reduce the aminophylline last Friday, and I've been doing okay the last couple of days on a reduced dose, so hopefully all will go okay.  My lungs feel a bit twitchy and gunky still - more than usual at this stage of things - but it's right that we try to get the aminophylline down and see how things go.  After all, I need to get the drip down before I can begin to think about getting home.

Home is definitely where I need to be heading towards.  I'm so sick of hospital.  I'm sick of being ill and of the relentless nature of it all.  It's months and months since I've been truly well and it's taking it's toll.  I feel like I lose myself to illness ... like I become nothing but illness, with only illness to talk about and only illness playing any part in my life.  The life of illness is not a life, it is existence.  It is the mere getting through each day, but without any other real purpose.  This is why I try to live a real life as much as I can when I can, because we all need purpose and reason and positive things.  I need things other than medicine to keep me ... real. 

Right now I feel like I am a container for disease and decrepitude.  I feel so seperate from all that makes me who I am.  I ought to have started back at university last week, and now I don't know if I'm going to have missed so much that I'm going to have to defer a year.  I worry about that.  It's not what I want to do, but at the same time, I don't want to compromise my chances of success on the course simply because I've been ill - the result would reflect my illness, not me.  I can't do anything about this until I get home and can speak to the course director, but it doesn't stop me from fretting.

I will write.  I have been writing in my head.  I have a couple of bits and pieces floating around in my mind that I want to put down on paper for my book, but I haven't had the brain power to think in a writerly matter.  Writing will keep a bit of me real.  Thinking about the writing keeps that bit of me alive, but I actually need to do it if I'm to sustain the life, and for that to happen I need just a tad more energy.  I'm so exhausted.

When I think of how active I used to be I marvel at myself, not that I was anything marvellous or special, but just that I could do all those things.  In actuality, all I did were the things of normal living, but so many of those things are so far removed from what my life has become that they now seem amazing to me.  I never thought I'd be reduced to lying in a hospital bed, day after day counting the holes in the ceiling tiles, and every day knowing that there'd still be sixteen hundred in each one.  Okay, so I won't be here forever, but I know that when I leave it will only be a temporary departure, and that when I return there will still be sixteen hundred little holes in each ceiling tile, and that when I return I will be back at the beginning of another fight for breath.  If I'm lucky I'll get through it, but it's never without its scars because even each scratch of an interruption in life leaves its mark.

Maybe none of this makes any sense.  Maybe it's all a huge ramble that means nothing to anyone but me.  Maybe I'm just feeling sorry for myself.  Maybe so.  That doesn't matter.  The fact is that I'm miserable, and to be honest, I think it's reasonable that I'm miserable about it all sometimes, and maybe it's even reasonable that I tell you about the misery, after all, you have the choice of whether or not to read it - I don't have the choice of whether or not I experience the things I do.  Yes, I will allow myself to wallow for a while, because sometimes wallowing can be the healthy thing to do.  Wallow then let go knowing that I've given myself permission and the time to feel what needs to be felt.  To misquote Michael Leunig, 'Let it go.  Let it out.  Let it all unravel.  Make it a path on which to travel.' (The Prayer Tree, 1990).

As predicted

I didn't last very long at home after my last post, and as I thought I might, I ended up back on Ward 29 the following day.  I'm still on the ward.  I struggled on at home for as long as I could, but the point at which I decided enough was enough was when I thought that I'd just have a rest from what I was doing and sit on the sofa for a bit while I caught my breath, only to realise that all I was in fact doing was sitting on the sofa doing nothing but thinking, 'Gosh, this is hard work.'  I phoned my vicar to see if he knew of anyone who might be able to take me to the Freeman, and then phoned J on the ward.  Thankfully J had a bed for me and the vicar easily managed to find someone to bring me up to the hospital as lots of people were gathered praying for me.

I've been pretty ill.  It turned out that I'd picked up streptococcus pneumonia just before I was discharged from my previous admission, and of course anything that effects the lungs is liable to set off my asthma.  I've been on the aminophylline infusion and the oxygen since I came in, and I was on IV antibiotics for several days before being changed onto orals.  These were stopped yesterday as I have been getting bad tummy pains, which have most likely been caused by the antibiotics, and indeed the cramps have lessened somewhat since stopping them.  I'm still getting quite uncomfortable at times, and needing pain killers, but the pain certainly isn't as bad as it was yesterday or the day before.

We tried reducing the aminophylline on Friday, which I thought was a tad premature as I still didn't feel steady, but the consultant was eager to give it a go.  We did.  It didn't work.  After a few hours at a reduced dose my chest was very tight and wheezy again and I felt like I was beginning to really struggle once more.  I was already totally exhausted as I haven't been able to have my usual big sleep this time, I think because the chest tightness and wheeze has been so long and protracted, and I was coughing so much too at the beginning of the admission.  Anyway, the infusion was put back to full rate on Friday evening and stayed there till today.  It's been reduced again this afternoon, and although I can feel a difference I don't feel dreadful so that's improvement I guess.  I'm nervous though, and getting through the night without 'events' will be the big test.

I hadn't had time between admissions to deflate from the horrid water retention, and of course it's only got worse with this admission.  However, this time I have been put on big doses of furosemide, which has helped somewhat although I'm still whale-like and hating that.  Speaking of whales, I've become even more like one as I've developed a barnacle problem in my mouth.  Well, the doctors call it oral thrush, but I'm convinced it's barnacles ;o)

Did I tell you that last time I was in I had a dream that I had to pour custard into my ears?  In this dream it was very important that I pour custard in my ears and it was very important that I do it correctly.  In my dream I succeeded, and it seems that the dream was almost prophetic!  Not that I've actually gone and poured custard in my ears, but I did go almost completely deaf in my right ear and partially deaf in my left ear, and it felt like they were full of custard.  It turns out that streptococcus pneumonia bugs can cause ear infections as well as lung infections so the deafness and creaking in my ears has probably been that, but I remain resolute that I have custard in my ears and barnacles in my mouth ;o)  Actually, the custard is dissipating now and I can hear better again, and the barnacles have been helped by a course of fluconazole, but that finished today and my mouth isn't quite better :o(

All in all it's been a horrible time, and for all that I'm much better now than I was when I came in, it's felt like a terribly long haul with one thing after another.  I'm also completely whacked.  This is the first time I've had the computer out and it's totally exhausting.  The nurses have said it'll probably take me six to eight weeks to get my full strength back ... just in time for another admission then, most likely :o(  Still, I'm not thinking about that.  What's important at the moment is to get better from this round of fight, and then to get home.  How I long to be home, and stay there!

Progressing

I'm nine days down the line of admission and I'm progressing well, surprisingly well.  I felt rough with both the asthma and the 'flu at the beginning of the admission, but things have been going okay, and rather amazingly I'm hoping to get home tomorrow!  It's a long while since I had an admission of under a fortnight, so to be getting home on day ten will be really quite something, though I know that I'll have to be sensible and take things easy when I get out of here.  That said, I don't think it's going to be too difficult to take things easy as I'm still very tired, which is probably a combination of the asthma and the 'flu virus.  As you most likely know, I quite often launch myself right back into life with little time for proper rest and recuperation, but this time I'll have to be sure that I do as I'm due back at university a week on Tuesday and it's going to be a heavy semester.  I have two-thirds of a two year MA to do in two-thirds of one academic year...

For all that this admission hasn't been too bad in the scheme of things, it'll be a relief to get home.  I know that I will have to pace myself, and that I will probably keep tiring easily for a while yet, but I'm definitely emotionally ready to get back to my own place.  During the past couple of days I've felt the beginnings of the hodpits lurking within, not in a major way, but enough to feel their niggle every so often.

Yesterday I had a bit of a taster of how exhausting getting back into life this week is going to be as I had an appointment at the RVI for follow-up with the plastic surgeon after my Carpal Tunnel Syndrome op six weeks ago.  Obviously I had to go to the appointment from here, which wasn't as straight forward as it ought to have been as Patient Transport Services (PTS) were pretty rubbish.  My appointment at the RVI was for 9.45am so PTS said I needed to be read for pick up from the ward at the Freeman anytime from 8.15am.  I'm not a morning person by any stretch of the imagination so 8.15am often feels like the middle of the night, especially when I've been poorly.  However, the nurse came and woke me at 7.30am and I was up, washed, dressed, and ready for pick up by 8.15am as requested, but PTS didn't arrive until 9.55am - ten minutes after my appointment at the other hospital.  Thankfully, the nurse here phoned through to the clinic and told them I was going to be late, and said that she'd call them again when I'd left the ward, but I'm not sure that would actually have been an awful lot of use to the clinic as PTS then went and picked up two other patients before finally setting off for the RVI.  They then dropped off one of these other patients before they took me to the clinic I was due at, arriving for my 9.45am appointment at 10.40am!  I was not impressed at all.  However, I was thankful that I was still seen in clinic as they could easily have refused.  In the end I was only in the consulting room with the surgeon for all of five minutes max, during which time he assessed the result of the surgery I've had, was pleased with progress, said I could drive again without problem, and told me I should have the other hand done now.  That'll be within the next six weeks, but last time I was told this I ended up having the op eleven days later, so it could be almost anytime from now.  I know the op needs to be done, so it's better to get it out of the way, I suppose, but I feel a little shell-shocked if I'm honest.  No time for rest or a break from hospitals.  I suspect it's contributed to the hodpits niggles.  I hope I get at least a few days of relative normality at home before I have the surgery...

Now, on a completely different subject, one of the meds I take is a steroid nasal spray.  For some reason (probably financial) the pharmacy here have this time sent up nasal drops instead of a spray.  It's the same medication, just a different method of administering the drug.  The trouble with drops and noses, though, is that drops go down and noses go up, so I was a little perplexed as to how I was supposed to get the drops into my nose.  I came up with the radical idea of reading the patient information leaflet that comes with the drops, and low and behold there were instructions!  Much to my amusement the instructions suggest that the patient stand on their head and then maintain their upside position for at least one minute!  I'm in a room of my own so I haven't been able to see if others have been prescribed these drops, and if so whether or not they're standing on their head, but I haven't been aware of any other patients assuming a general upside down position for at least a minute, although one of the nurses did say that she'd been given these drops recently too and she'd had to get help from some of her colleagues to help her with the upsidedownness.  The blasted nasal drops don't even come with a cushion, which you'd think they ought to if the manufacturers are suggesting those who use them stand on their head.  What's more, I can tell you from experience that assuming an upside down position rather impedes breathing ability ... and then of course there's the POTS, which certainly doesn't agree with being upside down.  I have been rebellious.  Oh, no fear, I've been taking the meds, but I haven't been standing on my head.  No, I've been much more refined and have, instead, been tilting my head all the way back before squeezing the drops into my nose.  It seems to get them far enough back as they drop all the way down into my throat ... which is perhaps a little too far, so maybe they won't be doing the job...  One thing is for sure, I won't be asking my GP to change my regular prescription, but at least the idea of a ward full of folk who can't breathe at the best of times now having to stand on their heads to administer their medication made me smile :o)

Anyone for a nasal drop?

Grumpy pants

When the cat gets stroppy, which happens quite a lot with Psycho Kitty, Zach, I often affectionately call him Mr Grumpy Pants.  The past couple of days I've been doing the typical 'pets reflecting their owners' thing and have been Miss Grumpy Pants.  I'm just sick of being in hospital now, and every little thing has been niggling me and making me tetchy.  Poor W has got the brunt of it, which she really doesn't deserve, but more than that, I just feel naff when I'm grumpy.  I get fed up with myself for being grumpy, and of course that makes me even more grumpy.  Okay, so there's plenty of valid reason for me to be fed up, but I don't like feeling negative and miserable, and stroppy.  I let a smidgen of it out much more appropriately earlier this evening by having a couple of dribbly tears on one of the nurses, but nothing very much.  They're so lovely here on Ward 29 - let me feel however I feel, are genuinely interested in whatever those feelings are, and know exactly how to handle each individual occasion.  So this evening I got a hug, a glass of milk, and chat time.

A little earlier I was talking with one of the other nurses about my desire (and need) to get home.  I'd told the junior doctor I saw yesterday that I was hoping to get home at the end of the week, but she'd been very non-committal because apparently my white cell count is still a little high, indicating there's some residual infection.  I've been so poorly this time, and had such a major set-back after an initial improvement, that the nurse today thought that maybe the doctors would be a little more cautious than usual about sending me home.  None of us want me to have another flare-up of infection and bounce right back, but personally I think I'll be fine to be going home as I'm not spiking any temps or anything.

In a bid to make headway home I came off the oxygen late this morning and have been pottering around the room a bit more than I had.  I've had one or two periods of puffiness, but nothing major and nothing that didn't settle easily enough.  Although I really want to get home as soon as possible now, I've resigned myself to being here tomorrow, but I'm hopeful for Saturday.  The nurse I spoke to about it this aftenoon thought that might be realistic enough, and hopefully the docs will think similarly when I see them in the morning.  I should be seeing the registrar and the consultant (not my consultant as he's away this week, but one of the others who I know very well), and they're usually guided by how ready I feel for home, so I'm gunning for discharge on Saturday - just in time for fireworks :o) although I won't mention that to the docs ;oP

Don't worry, I won't go pushing to get home if the doctors really don't think I'm up to it, but my white count wasn't massively high, and I'd go to my GP at the first sign of any reappearance of infection.  I do need to get home now though.  Even if I get home on Saturday, it'll be almost four weeks since I was admitted, and there's only so much getting better one can do in hospital.  A certain amount of recovery comes when you immerse yourself back into life, and anyway, hospitals are fantastic places for picking up more infections, even simple ones like the cold I got that caused the chest infection and set-back I had the other week.

Yes, I need to get home.  I need my own space and own surroundings, and I need my cat.  I need to be able to process all that's happened, get my head around how poorly I've been (the nurse I was talking to this evening said that she's been really scared for me this time, and have scared all the doctors too), and also have the opportunity to grieve for a friend who died last week.  Rachy was someone I'd initially met through the discussion boards on the Asthma UK website, but had got to know her well through another group and then through text contact.  We may never have met in person, but we were still friends, and I'm missing her.  I won't say anything more about that for now, because it's all a bit too raw and unprocessed, but I thought I'd let you know that it's something going on for me, and is contributing to my upset and general grumpiness.

Now I should probably try to sleep.  I haven't slept well for several nights with my mind working overtime, even though I've been really tired.  It won't be any good me trying to persuade the SpR and the consultant that I'm okay to go home if I'm both grumpy and looking exhuasted.

Slow decline

When I was in London I picked up a bug. It started to go to my lungs, unsettling them greatly, and I ended up being given antibiotics by Dr H when I saw him in clinic on the Thursday before my party. I kept myself going for the party and had a great time, despite being below par. The antibiotics seemed to clear up any bacterial infection, but my lungs had already been set off on a downward slip and they're still going, but it's slow, very slow. I'm sick of it. I know that it's beyond the stage of doing a u-turn and getting better, but it's taking so long to slip that I'm getting very weary of it. I'm not too bad if I sit still, but as soon as I start to move I get very breathless and wheezy, and night times are rubbish.

I don't know what to do. There's not a lot I can do, which is why it's such a difficult place to be stuck. I'm not yet sick enough to be going to hospital, but I'm not very functional at home either. I've thought about seeing my GP, but there's little point as there's nothing they can do. I'm on all the medication they can give me 'in the community', and I'm nebbing as frequently as I can, and more.

I could email J on the ward and ask his advice ... but I know that he won't really be able to offer me anything until things go into crisis. It's so wrong that I have to wait for crisis before I can get help, but that's how things seem to be at the end of the medical treatment road. It's rubbish.

I'm tired of it now; tired of the slow decline. I just want it over, want it to snap so that I can (hopefully) fight through it, and then (hopefully) have a break from it for a few weeks. I'm tired. I need it over. I'm stuck.

Slow progress

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

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

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

All mixed up

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

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

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

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

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

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

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

Nothing is right.

My step-brother is dead.