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

Today is the tomorrow that you worried about yesterday.

Sunday 28 February 2010

Beyond a joke

This isn't funny. It really isn't funny. I think, no, I'm certain that I have bronchitis. I've had it many times in the past so I know what it feels like and it feels like this. I'm bubbling away and my lungs are being ever so musical, and they have that itchy, scratchy, rubby, irritated feel about them, and I'm coughing like a heavy smoker, and I feel rubbish. My nebs give me some relief, but only about 20 minutes and then I'm back to where I started. I should probably be in hospital. I nearly gave in and called an ambulance last night, but in the end I couldn't face the prospect of the post-admission process of being carted around the city from hospital to hospital, so I'm hanging on until tomorrow when I can contact Ward 29 and go directly there ... although I'm still hoping that I can avoid hospital all together. I'm probably being naive.

I'm so, so sick of this. It's been one thing after another and I'm knacked. I would dearly love some respite from it - from the ceaseless bouncing from one illness to the next, and from feeling so unwell so much of the time. And while breathing is such a struggle I can't even get any proper rest. I'm exhausted.

I know that if I were a spectator to myself then I'd be urging myself to go to hospital sooner rather than later, and that I really ought to be going sometime round about now, but I just can't face the emergency admissions unit at RVI. While I was lying/sitting in bed last night I was saying to myself, 'This is stupid. Just call an ambulance. You would if it were anyone else,' but I couldn't do it. I thought about calling the out of hours doctor, but I knew that they'd just send me to hospital and I'd end up at the RVI's EAU anyway. If it gets absolutely desperate then I will give in before tomorrow, but right now I'd prefer to take the risk of staying at home ... maybe it's a stupid risk ... most likely it is ... part of me doesn't want to take the risk, but after last time on EAU's attached ward I just cannot face the prospect of that again. Of course, there's the possibility that even if I wait until tomorrow and contact Ward 29 that they won't have a bed, and then I'll be in the position of knowing that I have no choice but to end up in EAU until 29 have a bed. I hate this.

Am I rambling? I feel like I'm rambling. I feel like I'm not making much sense. I'm just fed up with all this and the situation I'm in. So very fed up and not feeling at all well.

Thursday 25 February 2010

Testing times

The last couple of weeks have been something of a challenge, which is part of why I haven't updated my blog.

It started with a standard review appointment with my asthma consultant, who described my asthma to a medical student as 'terrible' and then made the usual comment that there's nothing more we can do at the moment. In a last ditch attempt to try anything we thought we'd maybe give tiotropium a go seeing as it's probably the last thing we haven't tried to date. This would have to be in place of the ipratropium nebules as they're very closely related drugs and there's a significant increase of risk of side-effects such as glaucoma if used in conjunction. It was a gamble, but a gamble worth taking. It didn't work out though, and although it would've been nice to have been able to cut down on the time I spend using the nebuliser, and the generally quantity of medication I take, my lungs didn't like the change and began to go downhill. My consultant has gone on holiday for a couple of weeks so wasn't around when I called his secretary to explain the situation and get the official say-so to go back to my old meds, but she spoke to one of my consultant's colleagues and they've given that say-so.

The day after my appointment with the asthma consultant I had an appointment with my POTS consultant at the falls and syncope service. I had a huge number of questions for Dr N, and managed to get through most of them, although some of the time was taken up with questions to and from three medical students who were sitting in on the consultation. On the whole, I don't mind med students coming in, because they have to learn and they're going to learn best by having patient contact. There's been one occasion I can think of where I've requested a preference not to have a student present, but that was because I'd wanted to discuss a sensitive issue that might have needed some explanation to the student, and I didn't want to go into it. Anyway, this time I had no objection and it meant that the three third years learnt a little about POTS. As I'm still passing out a lot Dr N decided that it'd be a good idea to get a tilt table test done, and before I knew it I found myself being strapped to a bed and tilted to an angle of 70 degrees. The plan had been to leave me for thirty minutes and if I didn't pass out by then they'd give me GTN (this is supposed to make you more sensitive to fainting, or something), but I'm allergic to nitrites so I can't have GTN so they changed the plan to a forty minute test without GTN. After 6 minutes I was feeling really nauseous. After 13 minutes I was throwing up and almost out. At 13 1/2 minutes the test was stopped. In addition to the POTS diagnosis they've now also given me the vague diagnosis of vasovagal syncope, which basically means that I faint, so it's not a very informative diagnosis really. However, because I didn't actually reach the point of passing out, but was only very, very close to it, Dr N wants to repeat the tilt table test. I'm not looking forward to it, especially as, to use Dr N's description, next time they'll 'put me in a hoover bag'!!! Er, great... Apparently this will reduce the test time from 40 minutes to 20 minutes, but to be honest I can't see the use in this seeing as I only lasted 13 minutes last time.

The following few days were doctor-/appointment-free and on the Monday evening W and I went to the theatre to a fantastic production of Pride and Prejudice at Theatre Royal. It was great fun, and the company (Theatre Royal Bath Productions) really brought out the humour in the story. We both really enjoyed it, but it turned out that we also both picked up a cold while we were there. I had to do what I could to ignore feeling coldy and grotty and the ensuing lung-grumpiness as I had another late essay to write for my OU course. I eventually got it done and sent off into the ether towards my tutor on the evening of Wednesday last week, but then proceeded to feel grottier with the cold. Miserable.

The next day I had an appointment for a sight test at the optician - the 'usual' optician, not the hospital optician I go to every six months. My prescription has changed again (though not by much), but I'm not getting new lenses just at the moment because the optician says she thinks my cataracts are now at a stage where they need removing. Things have been getting cloudier/mistier and the light scattering has been getting worse, so I knew that the cataracts were getting denser even if maybe not all that much bigger. I know the cataracts themselves are still pretty small, but they're dead central so interfere with vision significantly, and I've been aware that the one in the right eye is definitely getting worse. The optician wrote a letter to my GP suggesting a re-referral to the opthalmologist and I now have an appointment with them for 1st April. The thing is that last time i saw the opthalmologist she said that she'd be extremely reluctant ever to operate on my cataracts because of the risk of the anaesthetic on my asthma. She said that there's even a risk using local anaesthetic so really wouldn't be keen to do the op. But I'm not keen on going blind, and personally I'd rather take the risk, especially as I know that Dr H (my asthma cons) can give advise and be involved if need be. I have a whole host of thoughts and emotions running through me with this ... I don't want to go blind so I want the cataract removal op; I don't want to die from asthma so I'm nervous about the risks to my lungs; I don't want to have cataracts in the first place and I slightly resent the steroids I take for my asthma that have caused them in the first place; I don't relish the idea of any kind of surgery, full stop; I'd love the world to be clearer again and know that once the cataracts are removed then there's almost zero chance of them returning (the only possibility would be if they didn't remove every little scrap of lens). I'm nervous, impatient, anxious, excited (at the prospect of clear sight, not at having surgery!). Very mixed up.

At around 3am I woke up with my right eye stuck together and I immediately knew that I'd picked up conjunctivitis, most likely from the optician. I got up, gave my eyes a bit of a clean so that I was a little more comfortable, but they still continued to dribble their nasty gunk, and as the night went on the gunk got gunkier and my eyes got sorer. The right was definitely worse than the left, which would fit in with the optician having fiddled more with my right eye as she had a good look at the cataract in that eye. I phoned the optician in the morning just to make them aware, rather than to complain, but they were ever so defensive saying that they'd had no other complaints and it was 'probably just a coincidence'. I'm still sure I got it from there, and I wasn't really complaining, just telling them so they could make sure their equipment/opticians are clean and infection-free. Anyway, I ended up heading up to the walk-in centre for some chloramphenicol eye drops, so that was another medical contact. Drops in hand (well, drops in eyes really ;oP ) I went home to gather my things before taking myself up to Edinburgh for the weekend. I was staying with Mum, getting a bit of much-needed TLC and was planning on meeting up with a couple of OU friends, one of whom I'd never met before and was visiting Edinburgh from Portland for the weekend.

It was lovely to get some parental cossetting, especially while I was feeling so yuck with the cold, conjunctivitis and increasing lung-grumpiness. The lung-grumpiness was getting worse though and I started to produce pond life so on Sunday morning I ended up phoning NHS24. I needed some antibiotics before things got too nasty. I have to say that both the people I spoke to on NHS24 were very good and responsive, taking my medical history on-board with appropriate significance. Within half an hour I had an appointment with the out of hours doctor at the OPD at Edinburgh Royal Infirmary, so Mum, J (step-dad), and I got ourselves together and took ourselves off to the ERI. Again, I was impressed by the thoroughness of the doc (an experienced GP and out of hours doc), and appreciated his concern and reluctance to just prescribe some antibiotics and send me on my way, even though I didn't want to end up round the corner in A&E. The doc had taken a history from me and was subsequently aware of my potential to crash with my asthma, so he phoned through the medical registrar, explained my situation and discussed the best plan of action. He then called for a porter and I was trundled round to Immediate Care in A&E, where I was examined, x-rayed, jabbed with a cannula, had bloods taken, and nebulisers given. All the staff were lovely, and the doctor was very on the ball, and clearly concerned, though I think more by my history than by my presentation. He said that at that point I was 50/50 for admission, and I think that I had I not had my parents with me then he would definitely have admitted me. Even with them there he was very reluctant to let me go, and it was only after a few hours of observation that I was allowed home. I didn't feel great, but I didn't feel as though I needed to be in hospital, and with antibiotics now in hand things should settle. Settling grumpy lungs can be a bit of a long job though and they're still not very happy. In fact, today I've been barking like a seal :o(

I was back at the doctors' surgery yesterday too, because out of nowhere at around 9pm on Tuesday evening I started having intermittent waves of excruciating stabbing pain in my stomach/liver area. The GP made sure it wasn't pleurisy, which she said in my case is considered an emergency (!). Thankfully it isn't that, but I didn't think it was anyway. Other than that though she seemed a little uncertain as to what it is, but options include an ulcer (which would probably be medication induced), chest wall inflammation, or muscular (but it doesn't feel muscular). The plan of action is a passive wait and see if it settles on its own, and she's given me some pain killers. It is a little better than it was, though it hasn't gone yet and I'm dosing myself up when I can. I'll see how it goes over the weekend, and I'm hoping that it'll be much improved by Monday, whatever it is. I've had an ulcer from some of my meds in the past, and although the pain is presenting differently, it's a similar type of pain, so I wonder if this is another ulcer. Even if it is it could heal itself so I'll see, and I'll hope.

Today has been a pyjama day. I've done very little, barked like a seal, wheezed a fair bit, done an hour and a half's study, felt guilty about not having done more study, but not guilty enough to actually get productive. I will get down to it. I have to. I've got several weeks to catch up on, but on a positive note, that essay I mentioned earlier, I got 88% for!

Monday 8 February 2010

A bit less Wensleydale

Last time I posted I was feeling pretty emotionally crumbly, but things in that respect have improved over the past five days or so. I think this was in part down to an appointment with my new psychiatrist. I've seen a psychiatrist for many years now, initially because I was extremely depressed (for reasons that I won't go into), but I've been really well in that respect for almost seven years. Of course I've had the occasional reactional blip, almost exclusively in response to my physical illness, but they've been short-lived and understandable. I now see the psychiatrist because of the emotional impact that my asthma has, but I don't see them very often these days simply because I don't need to - I generally cope a whole lot better with the things that life throws at me. In fact several years ago the psychiatrist I was seeing at the time said that he wouldn't discharge me because I cheer him up too much :o) That was two psychiatrists back.

The psych services are very unstable with extremely little consistency, which I think is terrible as it's one area of medicine where the development and maintenance of a trusting doctor-patient relationship is vital, but it's just not there. Maybe it's doctor burn-out, I don't know, but whatever it is I'm now onto something like my 12th psychiatrist in 14 or 15 years! Things have been more stable since the middle of 2003, although I am now onto the third psych since then.

Usually psychiatrists are fairly good at telling you that they're going to leave, but the last one didn't tell me and the first thing I knew about it was when I received a very strange letter from the community mental health team (CMHT) that I think I mentioned a few posts back. The name and address at the top of the letter were mine, but it then went on with 'Dear Lesley', told me that the appointment I'd been expecting just a couple of days later with Dr G had been cancelled and a new one made for me with Dr M - a psychiatrist I hadn't seen for two years - on 32nd January. Hmmm, someone obviously wasn't with it! I phoned the CMHT to ask them what was going on, and while they couldn't account for the date or the wrong name, they assured me that the letter was for me and that the reason my appointment was to be with Dr M was because Dr G had left. Oh. News to me. They said they'd send me another appointment, this time for a date that existed, so I waited, and I waited, and then I got a letter saying they were sorry that I couldn't/didn't attend an appointment with a Dr T on 30th December. Had I known about it (and had I actually been in Newcastle) then I would've gone, but I didn't go because I didn't know ... and anyway, who was this Dr T? I phoned the CMHT again, explained my reason for not attending and asked who Dr T is, and the answer? A new psychiatrist. Really? What a surprise. Oh well. Eventually, having supposed to have had an appointment with Dr G at the beginning of November, I saw Dr T on Monday just gone. I hadn't realised how uncertain I was about meeting yet another psychiatrist until afterwards. It's not just the prospect of having to get to know yet somebody else, explaining the past and my current health/disability, but also the prospect that it's yet another locum so there's no real point in going into things in too much detail or working out their approach to 'treatment'. I had nothing to worry about. Dr T has taken on a permanent position, is fairly young, a lovely, approachable woman with a good sense of humour, on the ball, and not too quick to jump in with medication. Like almost every other doctor I've seen in the past couple of months she hadn't heard of POTS before, but as this has been the thing that's impacted so enormously on my life over recent times, this is what I needed to talk about. She was open to learning about POTS, and of course was concerned about the impact it's having on my life both physically and emotionally. She also said that if there's ever a time when I'm not well enough to get to my appointments with her, if I give her a few days notice then she's quite happy to come and see me at home! This is amazing. This is how the mental health services should operate, but it's not something that's ever been offered to me before. Occasionally Dr M would come to see me in the Freeman when in with my asthma, but it wasn't something that had specifically been offered, rather something that I asked if it would be possible.

After my appointment with Dr T I was hugely relieved. I knew I was in safe hands, and that those hands are here to stay, and I'd also been able to off-load a bit of the trauma of the past few month's life-changing on-set of POTS. I'd been miserable, crying, scared, and emotionally crumbly, but now I'm not so Wensleydale (like the cheese).

It's a huge relief, all of it.