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

Today is the tomorrow that you worried about yesterday.

Wednesday, 26 November 2008

Not 100%

For once it's not my lungs that are making me feel under the weather, though I'm not 100 per cent. There are some nasty bugs going round at the moment, one of which is a sickness bug. I'm not sure whether I'm coming down with this or if it's just coincidence, but for the past couple of days I've been feeling rather nauseous, and today I've had a headache and a bit of a sore throat. It's nothing major, but the risk is that I do end up being sick, in which case I won't be able to keep my meds down and my lungs will go off on a strop. Because I have IBS I take an anti-sickness med everyday anyway (not actually for nausea/sickness, but because it speeds up my insides), so yesterday afternoon I doubled the dose to the max allowed in the hope of keeping things under control. I have to keep an eye on things, not only because of the potential consequences of sickness and my asthma, but also because there's the very slight possibility that this is being caused by the methotrexate I take for the asthma. I'm not overly concerned about this possibility because I know there are bugs going round and I know several who've had it, but I need to be a little wary. If the symptoms are down to the methotrexate then the chances are that I'll have to come off it as it would be indicative of more serious side-effects.

Methotrexate has been a last-ditch attempt to do anything for my asthma as there simply aren't any other options until science catches up with my disease, as my consultant put it. There are mixed reports of its efficacy, but when I first started taking it I did seem able to reduce my dose of oral steroids - prednisolone - that had been at 60mg or more for over a year. However, over the past few months I've had several bad attacks, which isn't any different from previously really, but I haven't been able to reduce the pred again after the post-attack increases. I'd managed to get the steroids down to 30mg at one point, albeit fairly briefly, which was huge progress, but the dose has gradually crept back up to 60mg, although I'm slowly trying to tickle it down a bit again. Anyway, the upshot of this is that my consultant is now not sure that the risks of taking methotrexate are balanced by the benefits and is questioning whether I should stay on it. I still want to stay on it, but I can see his point ... I guess I don't want to give up on the hope of its usefulness though. There simply isn't anything else that can be offered to help my asthma so letting go of this one hope is a very big thing, and I don't think I'm ready to do that yet so long as the methotrexate isn't doing me any harm.

I'm hoping that this slight off-colourness is either bug related or preferably just exhaustion as the fatigue after the last asthma attack hasn't abated yet. It's taking a very long time for this tiredness and lethargy to lift, and I'm a bit fed up with it ... I'm also a little uncertain as to why it's taking so long to pick up. Here's hoping it will lift and that all the other off-colourness symptoms disappear very quickly.

Monday, 24 November 2008

Picking up

I was quite miserable in my last post, as I'm sure you could tell, and I stayed quite miserable for most of last week. By the second half of the weekend I was beginning to pick up and now I feel as though I'm actually making some progress. I still don't know why this most recent attack should be causing me more distress post-event than others, and why it continues to run through my head like a film clip on repeat, but it's gradually losing some of its intensity and I'm able to concentrate on others things a bit more. It's helped that I've had contact with friends, and also been reminded that I need to take some of the initiative in instigating some of this contact. I've seen several people over the past few days, and even though I haven't always been up to much it's been great to have company. Today's actually been one of those days when I haven't seen a soul and haven't actually stepped outside the house, but I've been okay with that and haven't felt lonely. In fact I've actually done a bit of reading for my course, which has also served to ease some of the panic about being so very behind again. I'm still behind, but I'm picking my way through the course material and slowly making my way towards where I should be up to.
One thing that really didn't help my emotional state last week was the death of my step-dad's mother. She wasn't someone I knew particularly well, but she did feature in my life and it's always a shock when someone you know dies, even when it's half expected. She'd been ill for a while and I think that she was tired and pretty much ready to let go of life ... that doesn't make it any less sad though ... not really. It's her funeral on Wednesday, but it's in Woking, Surrey, so I won't be going (too far). I will be thinking about her though and praying for her. She was 94.

It takes a while to process death. A death also makes you consider the mortality of other people you love (as well as your own, but that's a fairly regular feature of my life anyway given the nature of my asthma), and this has also been the case over the past five days since Barbara died with the continued illness of another member of my family. This isn't to say that they're about to die ... it's just ... well, it's just where my thoughts are taking me ...
A couple of other things have contributed to my emotional wobble, things that I won't delve into at the moment. For now though I'm coping a little better than I was and I'm relieved to be picking up and coming out of the other side of the misery. There were a couple of days there where I couldn't hold back the tears however hard I tried, and these days that's really not like me. Once I decided to give into them, rather than trying to push them away all the time, I began to pick up, and then I was given the boost of friendship and company too. Friends really are a tonic to the soul.
The other thing I picked up the other day was my camera. I find that viewing the world through the lens makes me look at things differently and gives me a different persepective on the smaller aspects of life and the world. It makes me appreciate the detail again. It's ages since I put any photos up so here are a couple that I took the other day.

Autumn in Jesmond Dene

Robin Red Breast

Autumn in close up

I'll leave you with that for now.


(By the way, for some reason adding photos messes with the format of my posts and seems to do away with clear paragraphs, which is why I've inserted the occasional full stop, otherwise it'd just look like there weren't any paragraphs at all.)

Wednesday, 19 November 2008

New addition to Blogs I Read

I just want to point out a new addition to the list of Blogs I Read. It's Watching Geordie Life and worth a read. Take a look if you've got a spare moment or two, and enjoy :o)


Sometimes it all gets a little too much. Now seems to be one of those times. I don't know why it is that I can cope really well with some attacks and, although a real struggle to survive at the time I get through and move on, but some attacks leave their mark. I've been having trouble getting over the trauma of my most recent admission and I feel really quite fragile. Maybe it's not helped by still being so worn out by it, and I suspect that I'm also a little lonely as I've spent most of my time on my own since I got home. I'm usually fine being alone, but I feel rather in need of friendship and support at the moment, and whilst I know that my friends do care about me a lot, and also support me a great deal, I'm feeling a tad isolated right now. I think some of this is residual from the isolation experienced during a severe asthma attack, because whilst I can be surrounded by medics and nurses during the attack, I can't speak. I can't tell them what it's like. I can't say that I'm afraid. I can't stop what's happening. I can't participate - things happen to me, some of which hurt. I can't do anything more than try to breathe and try to stop thinking about the possibility that the next breath, or attempt at breath, might be my last. I am the centre of the activity, but I am alone in the experience.

Sometimes I cope okay, other times I struggle to get over the trauma. The variation is random, and for some reason this makes the more difficult times harder to deal with.

I don't like feeling like this - vulnerable, fragile, weak. It's disconcerting, and although I know it is different from depression, it has elements to it that remind me of the terrible depression that I've suffered in the past. Maybe it's the lack of control, or the teariness, or the loneliness that I talked about before. I remind myself that this isn't the same, that I will get through without sinking into a depression, that this is reactional to a traumatic event, and probably a normal reaction to being in a life-threatening situation. I will come out the other side and get back on track, but for now I have to find my way through, doing what I can to help myself. The problem with this is that I'm still so tired from the events and it's taking such a long time to recover that I'm limited in what I can do, so I have too much time for thinking and not enough energy to counter the traumatic memories with nice things ... with the company of friends.

Sometimes it's tough being chronically ill, and sometimes it's not easy to stay positive despite a desire to do so. Sometimes it's all a bit of a struggle. Sometimes things are frightening, and sometimes it's not easy to tell people that you're scared and lonely.

Sunday, 16 November 2008

With thanks

Less than an hour after writing my last post I was in dire straits and had the paramedics coming for me. The speed with which I deteriorated was startling, and within 10 minutes my peak flow dropped from 100 to unrecordable. I'd had a couple of friends on stand-by for a few days for when I needed to go in, so I called them and even though one of them was in bed asleep they both came round straight away and were here just before the paramedics, who themselves arrived very quickly. My friends N and J hadn't seen me in quite that state before so I think they were a little shocked, as were the paramedics, who I have to say were brilliant, got me straight into the ambulance where they tried to cannulate me, but with my veins being so overused they didn't actually manage to get one in, but they did give me subcut adrenaline in the hope that it'd help. Unfortunately it didn't help and I think I was actually a little worse by the time we got to the hospital. N sat in the front of ambulance with one of the paramedics on the way to the hospital and was told that the crew had been on all weekend, and although it was by then Monday, I was their first call who wasn't a drunk! Apparently they said that my call had made them feel like they'd done something worthwhile and reminded them what the job was all about. How awful that paramedics can be made to feel like they're not worthwhile and are used as a taxi service for people with nothing wrong with them other than the consumption of too much alcohol. I am so very thankful that they do the amazing work that they do.

When we arrived at A&E I was taken straight into resus where there was a bit of a panic about getting a cannula into me, which was proving very difficult and took several people several attempts, but they were eventually successful. Thank God. They quickly gave me all the drugs they could, but they're limited in what they can give me as I'm allergic to a couple of the ones that are often given for severe asthma attacks, so all they can do is give me what they can and then wait and hope. Unfortunately things were taking rather a long time, I had silent chest, my oxygen levels were low on high flow oxygen, my blood pressure was occasionally going a little too low, my breathing rate was apparently 40 breaths per minute and my heart rate was somewhere around 160. All in all, I was really ill and not improving, so the A&E reg called in the anaesthetists, who were obviously worried and wanted me in ITU. There weren't any ITU beds in the hospital where A&E is, and there weren't any at the hospital where patients are usually transferred to from A&E. There was one at the Freeman, but because there's no emergency admissions unit there, and it was 'out of hours', the ITU reg at Freeman said that they couldn't take me. The A&E anaesthetist got onto his boss, who turned out to be the medical director on call, explained the situation, and got the message back that an essential bed couldn't be blocked in such circumstances and that I was to be admitted into Freeman's ITU under my own consultant who, as you know, is based at Freeman on Ward 29 anyway. Now I know that my asthma is severe, and I know that it gets life-threatening, but there's something inescapable about the reality of it when you have an anaesthetist standing at the end of your bed exclaiming down the phone to the director of medicine that he has a patient with severe life-threatening asthma in desperate need of an ITU bed. It hits home. It's frightening ... maybe because the doctor's fear become apparent. I am so thankful for his persistence though and for all the help that he gave me. He called in another anaesthetist (from her home!) to go with me in the blue light transfer from A&E to the Freeman, although she first of all had to put an arterial line into my wrist. I have to say that I was a little scared by the fact that I needed an anaesthetist to escort me in the transfer as this is a sure sign that they're not 100% confident that I'm not going to make it across the city without crashing. I did make it, thankfully, and even more thankfully I just managed to avoid needing ventilating.

I had an x-ray done when I was in A&E, which other than the usual hyperinflation of asthmatic lungs showed a shadow near the bottom of my right lung. They gave me IV antibiotics in the hope that it was a patch of pneumonia, but they (and then ITU) said that they weren't convinced that it was infection as I didn't have a temperature. I had this uncertainty hanging over me for several days, and I have to say that I was quite scared. The last thing I needed was another problem with my lungs, particularly anything sinister such as cancer or fibrosis (which is a potential complication from one of the drugs that I take to treat my asthma - methotrexate). This has to have been the first time in my life that I've prayed to have pneumonia, but pray I did, and so did my friends. Eventually sputum samples revealed that I did have pneumonia, which thankfully meant that other more sinister causes for the shadow on my chest x-ray could be ruled out. Unfortunately the sputum sample also showed that the MRSA that I've had in my nose and throat for several years has now made it's way into my lungs. In theory this shouldn't cause me any more of a problem than it does in my nose and throat, but I know from a previous time of having MRSA in my lungs that it generally slows down the recovery process for me and makes my lungs more unstable/'twitchy'. This may, in part explain why it's taking me so long to recover this time.

So I made it to Ward 29 in the end, although I have to say that I was actually still quite unwell when I got there, and the staff looked a little surprised that I wasn't still in ITU. After another long, sleepless, breathless night, many nebulisers and hours longer of aminophylline later, things did at last begin to settle, and sometime in the afternoon of the day after I arrived on Ward 29 I was breathing well enough to sleep. I was woken at intervals for nebulisers and other medication, though mostly I stayed at least half asleep even then, but otherwise I slept almost continually for 4 days. I was still very tired and lethargic for several days afterwards, and I'm actually still fairly exhausted. I just feel wiped out by it, which I guess isn't all that surprising given the severity of the attack, the pneumonia, the length of time of my struggle to keep fighting for breath, the anxiety over the shadow on my x-ray and the general stress of being in a life-threatening situation, but I just don't feel right and it's getting me down a bit.

So now I'm home. I've been home for a couple of days, but too exhausted really to update my blog or do anything much at all besides plenty of sofa surfing. If I'm honest, I feel slightly traumatised by this most recent attack. I'm not sure why ... I mean, it's not like I haven't had severe life-threatening attacks before ... some attacks just seem to take more out of me than others, and this seems to have been one of them. I'm okay, and I'll be okay, but I am a bit tearful and have the acute stage of the attack running through my mind quite a lot.

Having said all that, I am immensely grateful to all who played their part in keeping me alive and in caring for me during my recovery. I thank them all whole-heartedly, and I thank my friends too for being there for me, particularly N and J, and for those who came to visit me on the ward.

I'm thankful that I survived again, however tough it was.

Monday, 3 November 2008

Count down

I got to the medieval party on Saturday :oD It was fantastic and I had a wonderful time. I will do a separate post about that, but probably not for a week or so, because now the adrenaline that's been keeping me going over the last couple of weeks is fast disappearing and I think that I'll be heading for hospital either tonight or tomorrow :o( My peak flow is making a rapid decent from it's already low levels to even lower readings, and if I continue on as I am then I may only make it an hour or so until I'm calling for an ambulance ... and maybe a friend to accompany me through the completely rubbish admissions system that will (if I'm admitted tonight) cause me to be ferried all over the city between hospitals over the next day or so :o( I would perhaps have contacted the ward a little earlier on, but I've been to see a member of my family whose not well and their spouse needed an opportunity to do some important sorting. It's difficult writing about this, because I have to be somewhat vague so as to maintain the anonymity of the people involved. I want to respect their privacy and be sensitive to their situation whilst also representing that part of my life. So anyway, I wasn't grand this morning, but not as bad as I am now, so when I got a call asking me if I'd go up (I got a lovely meal whilst there too :o) ) I said I would, and also that it'd be good to see them. However, I've deteriorated while I've been there and have hurried home as I've had a not too great experience of the hospital that is nearest them. Now I'm home I'm pottering, slowly gathering bits and pieces together for an upcoming hospital admission, whenever that may be. I always have my case packed, but I need to gather my meds; update the list I keep of all my meds so the docs don't have to trawl through a huge carrier bag full of bottles and boxes; and it's always good to have one or two things with me for when (hopefully) I'm starting to feel better.

So on that not so cheery note, I will leave you for now and get on with my gathering, and then wait for the point of splattage.