I think I've said before how, some time ago, I came to the understanding that depression is a monster that tells you lies. I've used this analogy a lot in my psychology sessions, and it's come to represent depression itself as a beast. I've described the experience of depression probably as many others have done - like being in a deep pit. Whilst it's quite an easy and obvious metaphor, it's also quite useful, because emerging from depression isn't usually (unlike my previous miraculous experience) a change that happens in an instant. Rather, there is a slow recovery, a gradual relief that can be difficult to see happening whilst you're in the experience. Using the analogy of the pit kind of gives a scale to the depression ... it means you can sort of describe how far down or up the pit you are; whether or not there are any signs of life in the soil or above the hole; whether or not you can see light at the top of the pit; how muddy the pit is and whether or not it's sucking you down further; and whether or not there's anything around that you can use to get out of the pit. I also imagine that the vicious beast - monster - of depression lives at the bottom of the pit, and the closer I am to the bottom, the louder and more numerous are the lies it is telling me about myself.
I was talking with my psychologist again during the last session about where in the pit I see myself as being at the moment. A couple of weeks ago, when I wrote Away with it, I/we thought that I was maybe half way up - things were still very difficult, but there was a bit of light at the top of the pit, and perhaps there was a worm (a sign of life) wiggling a little way out of a hole in the side of the pit. Talking in the last session, I said that I felt that I'd sunk a bit. I'm not on the bottom, like I was when at my worst point, but there was no sign of any worms for company, no signs of external life.
I often talk with my psychologist about the things that make me sink in to the pit, how I ended up there, etc, but my homework this week is to think about those things that have perhaps helped me to get off the bottom of the pit; the things that have helped me to ignore/challenge/not listen to the lies the monster tell me; the things that helped me to get as far up the pit as I managed to get before slipping back. It was suggested that perhaps I might write my thoughts about these things on my blog, and before the end of the session I'd decided that yes, I'd write about it here because, after all, I've shared with my blog readers much of my depression experience. This might take me a while because I haven't actually thought about it a great deal since my psychology session on Friday as my mum's been staying with me over the weekend. What follows will very much be me thinking out loud, so if it doesn't make a great deal of sense, that's why.
So, Things that have helped me so far in surviving/recovering from depression:
1. My psychologist and the sessions with her
S has been a constant for me during all of the distress. I have felt able to talk to her about anything and everything, sharing my darkest and most frightening thoughts, the true extent of my desperation. I've cried a thousand tears in front of her, broken down in uncontrollable sobs, and known that I've been safe to do so. I've trusted S with the most vulnerable and broken pieces of myself and known that none of it would be turned around and used against me (this is in contrast to someone else in an on-going situation, so has been a very pertinent point, and a significant trust). Unlike the multiple faces of the Crisis Assessment and Treatment Team (CATT), and the unreliable presence of the CPN, S has been there throughout without sessions being cancelled or postponed, and she is one person with whom I haven't continually had to relate the origins of my distress. Yes, S has been, and remains, vital in this process of defeating the beast and finding a way out of the pit.
2. Friends
I was terribly afraid of telling my friends that I was in the bottom of the pit and being devoured by the monster (and that's not how I put it to them when I did tell them). I was afraid because of all that I'd put them through during my previous severe (and very long) depression. I thought that maybe they'd be too afraid to stick around, not so much afraid of depression, but afraid of what depression has done to me before and how difficult that was for them to watch. So I tried to keep it from them this time. I tried to separate myself from them to pre-empt the pain I would feel if they couldn't cope with the depression again and opted to separate themselves from me. It turned out that all of that was one of the lies that the monster was telling me and got me to believe, because when I did ultimately 'come clean' to them about how desperate I was, they held me in their friendship. My close friends came to me, sat with me, and took gentle care of the pieces of me that they came across. They still do. They text, email, tweet, talk to me on FB, and come round to my flat. They encourage me to do things with them, to go places, and when I'm not physically well enough to do that, they come round. One of them has started tidying up my huge back yard for me so that it's a nice area for me to sit in or just to trundle through as my wheelchair access is at the back of the house. They encourage me to go out with them, meet them in the park for a trundle. They suggest that maybe they come over to bake cupcakes, just because it's a nice thing to do. They take me to shops I didn't know about to buy games for my Wii. One of them has sometimes phoned me in the middle of the night when she knows that I'm likely to be at me lowest, and she has talked with me for five hours, six hours, all through the night, during which time we've cried, we've laughed, we've done the whole spectrum of emotions and covered every subject imaginable and some you might not think about. They 'keep me safe' in all my insecurities about seeing mutual acquaintances in group situations that terrify me simply because I haven't seen others for so long and I dread the question, 'How are you?' One or two of those friends occasionally read my blog, and if those friends happen to read this I would like to say a sincere and heart-felt thank you. You are so very precious, and I hardly dare believe that I deserve such wonderful friends. Thank you.
3. Music
I've written a little about playing the piano again, and spending hours immersed in playing the violin again. I haven't been physically well enough to do any of that for several weeks now, but those were things I was doing when I was a little further up the pit than I currently am. But they haven't been the only musical things I've been doing. The choir I helped get up and running last year - Flotsam - is very important to me. Since being ill with the pyelonephritis again I've been too poorly to go to choir and I've found that really difficult. Choir gives me time with people (very important when I spend so much time on my own, unable to work, unable to get out much because of chronic ill-health) without having to interact too much with many if I'm feeling fragile. Choir gives me a place to belong, somewhere I can be a part of something good, a place where I'm the same as everyone else because we are all singing. Okay, so I can't be the same when they all stand to sing, but I'm kind of used to that, and it doesn't change the fact that I'm still singing just as they are. Flotsam's choir master is a dear friend who has known me (and I've known, obviously) since I was thirteen. He has seen me through some of the toughest times of my life, and even if I don't tell him any details, I always feel able to tell him if I'm not doing too well, and that has made Flotsam a very safe place to be. Of course, music itself can have an emotional effect, as I'm sure most of you have experienced for yourself, and the music we sing in Flotsam tends to be either uplifting or soothing. Music is also a part of me, something that has always been in my life, and has sometimes been my only way of expressing anything at all. It allows me to connect with the world - something in the world - that nothing else quite reaches, and it has been a creative outlet for me at a time when I've felt extremely stunted in my ability to creatively express myself in writing. It's not the same, but it helps.
4. Mum
During most of my previous deep depression I was largely unable to talk to my mum about any of my feelings. For various reasons I was angry with Mum, and I closed myself off from her. It was kind of necessary at the time, but there's been an enormous amount of healing that has gone on between us and we now have a wonderful relationship. Mum's support throughout this horrible time of depression has been invaluable and constant. She's phoned me often, but not intrusively so, and during the calls I've been able to tell her a lot of how I've been ... yes, at times I've held back from telling her everything, but in the end - maybe a few weeks down the line - I've been able to share most of those things too. Mum's been down to visit a few times, which has been very supportive, great company, and has provided much-needed TLC. Of course, there was also my trip up north to stay with her and J that unfortunately culminated in a hospital admission with pyelonephritis. Before I took ill, I was having a lovely, relaxed, gentle time with Mum and J, which felt nurturing and lightly refreshing. It was bad luck that I got so poorly and didn't really get over it while I was away so that it came back almost full-on shortly after getting home. The goodness gained by staying with Mum was largely erased, unfortunately, except that it helped me with number 5...
5. Making some decisions
Out of necessity, I'm going to be quite vague here. Firstly, there has been an on-going situation that has caused me a lot of distress. I'm not currently at liberty to expand on this for various reasons, but time with Mum, talking with Mum, and several in-depth conversations with my psychologist about the situation have led to me reaching a decision. I've yet to act on the decision made, but I'm working on it, and even coming to the conclusion that I have has helped.
There is another decision that I'm going to be equally vague about, but concerns something I've thought about a little in the past. I mentioned it to Mum when I was with her in Edinburgh, and since then have thought about a great deal. It's probably something for the long-view rather than to implement immediately, but I am beginning more detailed thinking about it, and have decided that I will most likely follow it through at some point. I think it's a good decision to have made, but will take considerable work. Anyway, enough of being vague.
6. Getting out
I've been too unwell with the recurrent pyelonephritis since coming home from Edinburgh to go out much at all. My days have been pain-filled and isolated as I've lain in bed or on the sofa trying to rest, trying to get/keep my temperature down, watching the clock for when the next antibiotic is due or pain killer can be taken, cuddling the cat whenever he's wanted and sometimes when he hasn't been too keen on it, watching daytime telly, and whiling away time on FaceBook. Before that I was trying really hard to make sure that I got out at least once a day. It might just have been to the shop, the park, a trundle around the local streets, or it might have been to town for some window shopping, or a wander along the quayside. I was avoiding driving anywhere because my concentration was so poor that I didn't trust myself to be safe, which meant that I couldn't take myself off to the coast - a place I usually manage to find some solace.
7. FaceBook
Okay, so this might sound strange to some, but I've found the contact with others through FaceBook valuable. At my very worst, when I wasn't able to tell my friends how I was, I didn't go there - I found it very, very difficult to interact with anyone in case I let it slip how I was - but when I did tell folk what was happening, FaceBook helped a lot. While I was isolated in my depression and by my difficulties in mixing effectively with others, I could roam around FB in the ethereal presence of others online. I have wasted many, many hours playing Bejeweled Blitz (sic) and Scrabble, clicking on links to You Tube videos posted by others, reading every status update of everyone on my friends list, and looking at millions of pictures of cats. To those of you who have never experienced depression and have busy, active lives may see all that time on FB as a total waste, but actually it's kept me connected to the world and reminded me of all people I know who are out there. It's given me something to do, and 'somewhere' to be.
I'm finding it very difficult now to think of other things that have helped. I'm sure there are more things, but I've been trying to write this list for three hours now and I'm brain-dead. Perhaps more will come to mind in the coming days, but I have more 'homework' to do ... and it's difficult, so it may be a while until I get back to you.
Tuesday, 25 June 2013
Sunday, 16 June 2013
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.
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.
Sunday, 9 June 2013
Not as planned
It feels like an age since my last post. I know it's ten days or so, but it feels so much longer because so much has happened.
I can't remember what day it was that I last posted, but in the early hours of the morning of the Thursday (30th) everything started to go horribly wrong. I lay in bed, trying to sleep and not doing too good a job of it, tossing and turning, and was a little worried that my lungs might go off because I'd had a bad day with them all during Wednesday. I just began to doze off around 3.30am when I got a sudden stabbing pain in my back around my left kidney area. At first I thought that maybe I'd just twisted and pulled something, but it kept coming back and was getting worse. I tried to ignore it. I took some pain killers. I tried relaxing. I tried different positions. Nothing helped and it was still getting worse.
I heard Mum get up for the loo at around 5.30am, and on her way back to her bedroom I called out to her. She came in to my room, saw that I was clearly unwell, took my temperature and sure enough it was 38C and climbing. It was obvious that I was going to need to see a doctor, and probably sooner rather than later as I was in so much pain, so I phoned NHS24 (the Scottish equivalent of NHS Direct/NHS111). The call handler asked a few basic questions then put me through to a nurse practitioner, who repeated some of the questions, asked a lot more, and made an appointment for me to see the out of hours doctor at 7am. The out of hours service covering the area where my mum lives is actually based in one of the out patient departments of the Royal Infirmary Edinburgh (RIE).
As I was in no fit state to drive, nobody else was named on my car insurance, and the insurance company was closed because it was well out of office hours, we had to get a taxi to the hospital (my wheelchair doesn't fit in Mum and J's car). By this time I was in agony, my temperature had risen to 38.7C, I was bright red, sweating, and feeling completely crap, so I wasn't surprised that the taxi driver guessed that we were going up to the hospital.
J and I arrived at the Out of Hours 'department' fifteen minutes before my appointment time, but the nurse took me straight through after the two doctors at the desk had glanced at me and looked a little horrified. The nurse took a history, took my temperature, had me give a urine sample (lots of blood in it), and quickly decided that I'd have to go round to A&E.
I have never seen A&E so quiet! There were loads of empty cubicles and hardly anyone in the waiting area, but I rather suspect that I wouldn't have had to wait long even if there had been more folk there. Anyway, I saw the doctor soon enough, who made me yelp with the smallest of touches to my left loin area, so ordered a CT scan and then dosed me up on pain killers - lovely IV fentanyl (about a hundred times more potent than morphine, to which I'm allergic). Oh my word, I could almost have laughed with the relief from the pain. It was practically instant, and as fentanyl's a strong opiate, it's not terribly surprising that I felt very spacey.
The doctor had been concerned that I may have kidney stones, which is partly why she ordered the CT scan, but thankfully the scan came back clear for stones, instead showing inflammation and confirming the other diagnosis of pyelonephritis. That's what I had back in February and it felt very much like that so I was expecting it to be pyelonephritis, but as there is a family history of kidney stones it could well have been that too.
I was admitted first to the Combined Assessment Unit where I was given some IV antibiotics, and eventually some more IV fentanyl too as I was close to screaming in pain. The CAU is just a stop-gap 'ward' though so at 1am I was transferred to a proper ward. I thought that I might have been taken to one of the renal wards, but actually I went to the respiratory ward. This may seem a bit daft at first thought, but actually it was because they were concerned that my asthma should be managed well because it's so brittle and unstable. Also, fentanyl has significant risk of suppressing breathing, and by this time I was needing it IV every hour, so it was actually a very sensible decision to put me on the respiratory ward.
I've only been in this hospital twice, and it's quite a big hospital, but very strangely I ended up not just in the same ward as last time (after I was in ITU on the previous occasion), but also in the same bed! The chances of that have got to be slim.
I have to say that all the care throughout my stay was excellent. My asthma was managed well, all my meds were prescribed correctly (that doesn't always happen when you're on a lot of different meds at unusual doses), there was good communication between the different medical teams (although I was on the respiratory ward, I remained under the care of the general medicine doctors), all were concerned to get my severe pain under control so got the Pain Team involved, the nurses were great, and they all seemed to manage with my allergies well too. I remember it being similarly excellent when I was in RIE with swine 'flu a couple of years ago, but the continuity of that excellence has made me even more confident in them.
So the care was great, but the illness was terrible. My temperature was high, my blood pressure was low (often around 85/45), I was rigourous (shaking from the high temperature), the pain was agonising, I was nauseous, and I was completely exhausted. The pain has continued, and I'm currently using fentanyl patches and nefopam to control it. But I have finished the antibiotics (which were IV for the first four days) and I have managed to get home. Actually, I was discharged early - too early really - because I had an appointment at one of the hospitals in Newcastle on Thursday that I was keen to get to. Had I not had that appointment then RIE wouldn't have discharged me when they did on Tuesday evening and I probably would have stayed with Mum and J for longer after discharge. As it was, though, I put J on my car insurance for 24 hours, and he drove me back to Newcastle in my car. We drove straight to my hospital appointment here as it was at 11am (we left Mum and J's house in Edinburgh at 7.20am), and J waited for me to finish before he drove me home, then did some basic shopping for me, and eventually he got the train back to Edinburgh in the middle of the afternoon. Bless him, he's ever so good to me and I so appreciate it all. I really don't think I would have managed to drive myself down that day, and I was exhausted enough as it was with what I did do.
I'm now at home, currently sitting out in the back yard making the most of the afternoon's sun, and the cat is curled up next to me in the shade - he is a limpet cat at the moment, not wanting to leave me alone for even a few minutes. I still have some pain, but I'm also still on the fentanyl patches and nefopam. I'm still extremely tired and lethargic, and I still don't feel properly well, but I am a lot better than I was when I was admitted to the RIE. My head is rather all over the place, and I feel somewhat shell-shocked by the pyelonephritis and hospital admission, and if I'm honest, I'm a concerned that there doesn't seem to be any explanation as to why I got pyelonephritis this time. In February it was due to having a catheter while I was ill with my lungs, but that wasn't the case this time, and neither did I have a lower Urinary Tract Infection (UTI) from which it could have spread to my kidneys. I don't know if this is something that's going to have to be looked at and thought about now that I'm home, or if it'll just get passed off as one of those things. I can't bear the possibility of this becoming something else I'll just have to learn to cope with - another chronic condition - because the pain is so, so terrible. I hope none of you ever have to experience it.
I can't remember what day it was that I last posted, but in the early hours of the morning of the Thursday (30th) everything started to go horribly wrong. I lay in bed, trying to sleep and not doing too good a job of it, tossing and turning, and was a little worried that my lungs might go off because I'd had a bad day with them all during Wednesday. I just began to doze off around 3.30am when I got a sudden stabbing pain in my back around my left kidney area. At first I thought that maybe I'd just twisted and pulled something, but it kept coming back and was getting worse. I tried to ignore it. I took some pain killers. I tried relaxing. I tried different positions. Nothing helped and it was still getting worse.
I heard Mum get up for the loo at around 5.30am, and on her way back to her bedroom I called out to her. She came in to my room, saw that I was clearly unwell, took my temperature and sure enough it was 38C and climbing. It was obvious that I was going to need to see a doctor, and probably sooner rather than later as I was in so much pain, so I phoned NHS24 (the Scottish equivalent of NHS Direct/NHS111). The call handler asked a few basic questions then put me through to a nurse practitioner, who repeated some of the questions, asked a lot more, and made an appointment for me to see the out of hours doctor at 7am. The out of hours service covering the area where my mum lives is actually based in one of the out patient departments of the Royal Infirmary Edinburgh (RIE).
As I was in no fit state to drive, nobody else was named on my car insurance, and the insurance company was closed because it was well out of office hours, we had to get a taxi to the hospital (my wheelchair doesn't fit in Mum and J's car). By this time I was in agony, my temperature had risen to 38.7C, I was bright red, sweating, and feeling completely crap, so I wasn't surprised that the taxi driver guessed that we were going up to the hospital.
J and I arrived at the Out of Hours 'department' fifteen minutes before my appointment time, but the nurse took me straight through after the two doctors at the desk had glanced at me and looked a little horrified. The nurse took a history, took my temperature, had me give a urine sample (lots of blood in it), and quickly decided that I'd have to go round to A&E.
I have never seen A&E so quiet! There were loads of empty cubicles and hardly anyone in the waiting area, but I rather suspect that I wouldn't have had to wait long even if there had been more folk there. Anyway, I saw the doctor soon enough, who made me yelp with the smallest of touches to my left loin area, so ordered a CT scan and then dosed me up on pain killers - lovely IV fentanyl (about a hundred times more potent than morphine, to which I'm allergic). Oh my word, I could almost have laughed with the relief from the pain. It was practically instant, and as fentanyl's a strong opiate, it's not terribly surprising that I felt very spacey.
The doctor had been concerned that I may have kidney stones, which is partly why she ordered the CT scan, but thankfully the scan came back clear for stones, instead showing inflammation and confirming the other diagnosis of pyelonephritis. That's what I had back in February and it felt very much like that so I was expecting it to be pyelonephritis, but as there is a family history of kidney stones it could well have been that too.
I was admitted first to the Combined Assessment Unit where I was given some IV antibiotics, and eventually some more IV fentanyl too as I was close to screaming in pain. The CAU is just a stop-gap 'ward' though so at 1am I was transferred to a proper ward. I thought that I might have been taken to one of the renal wards, but actually I went to the respiratory ward. This may seem a bit daft at first thought, but actually it was because they were concerned that my asthma should be managed well because it's so brittle and unstable. Also, fentanyl has significant risk of suppressing breathing, and by this time I was needing it IV every hour, so it was actually a very sensible decision to put me on the respiratory ward.
I've only been in this hospital twice, and it's quite a big hospital, but very strangely I ended up not just in the same ward as last time (after I was in ITU on the previous occasion), but also in the same bed! The chances of that have got to be slim.
I have to say that all the care throughout my stay was excellent. My asthma was managed well, all my meds were prescribed correctly (that doesn't always happen when you're on a lot of different meds at unusual doses), there was good communication between the different medical teams (although I was on the respiratory ward, I remained under the care of the general medicine doctors), all were concerned to get my severe pain under control so got the Pain Team involved, the nurses were great, and they all seemed to manage with my allergies well too. I remember it being similarly excellent when I was in RIE with swine 'flu a couple of years ago, but the continuity of that excellence has made me even more confident in them.
So the care was great, but the illness was terrible. My temperature was high, my blood pressure was low (often around 85/45), I was rigourous (shaking from the high temperature), the pain was agonising, I was nauseous, and I was completely exhausted. The pain has continued, and I'm currently using fentanyl patches and nefopam to control it. But I have finished the antibiotics (which were IV for the first four days) and I have managed to get home. Actually, I was discharged early - too early really - because I had an appointment at one of the hospitals in Newcastle on Thursday that I was keen to get to. Had I not had that appointment then RIE wouldn't have discharged me when they did on Tuesday evening and I probably would have stayed with Mum and J for longer after discharge. As it was, though, I put J on my car insurance for 24 hours, and he drove me back to Newcastle in my car. We drove straight to my hospital appointment here as it was at 11am (we left Mum and J's house in Edinburgh at 7.20am), and J waited for me to finish before he drove me home, then did some basic shopping for me, and eventually he got the train back to Edinburgh in the middle of the afternoon. Bless him, he's ever so good to me and I so appreciate it all. I really don't think I would have managed to drive myself down that day, and I was exhausted enough as it was with what I did do.
I'm now at home, currently sitting out in the back yard making the most of the afternoon's sun, and the cat is curled up next to me in the shade - he is a limpet cat at the moment, not wanting to leave me alone for even a few minutes. I still have some pain, but I'm also still on the fentanyl patches and nefopam. I'm still extremely tired and lethargic, and I still don't feel properly well, but I am a lot better than I was when I was admitted to the RIE. My head is rather all over the place, and I feel somewhat shell-shocked by the pyelonephritis and hospital admission, and if I'm honest, I'm a concerned that there doesn't seem to be any explanation as to why I got pyelonephritis this time. In February it was due to having a catheter while I was ill with my lungs, but that wasn't the case this time, and neither did I have a lower Urinary Tract Infection (UTI) from which it could have spread to my kidneys. I don't know if this is something that's going to have to be looked at and thought about now that I'm home, or if it'll just get passed off as one of those things. I can't bear the possibility of this becoming something else I'll just have to learn to cope with - another chronic condition - because the pain is so, so terrible. I hope none of you ever have to experience it.
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