A favourite quote and a way by which to approach life.
Wednesday, 26 November 2008
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
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
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
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
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.