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

Today is the tomorrow that you worried about yesterday.

Wednesday, 30 December 2009

Review of the year 2009

It's time, once again, to review the year that has been. In no particular order (though probably the same as last year as I keep them on my computer) here are the questions that I ask myself and I ask you too.
  1. What has been your biggest achievement this year? Getting another first in my last OU course and gaining a Diploma in English Literature and Creative Writing.
  2. What made you laugh most this year? Probably watching W 'wash' her face with baked beans!
  3. What has been your favourite/most listened to piece of music this year? I've listened a lot to Eddi Reader after being introduced to her music in the late spring/early summer.
  4. What was your best holiday this year? I've had two great holidays this year - France and Somerset. They were very different and are difficult to compare, but perhaps France has a slight edge, just because it was so very long since I'd been abroad and also that my two gorgeous nephews were there for some of the time.
  5. What new skill, if any, have you acquired this year? Erm ... I'm not sure ... making shortbread, perhaps ...
  6. What's the best book you've read this year? 'The White Tiger' by Aravind Adiga.
  7. What is your happiest/fondest memory of this year? It melted my heart when I was in France and my older nephew, O, who was 2 1/2 at the time, came running up to me the day before my brother's family went home, threw himself onto my knee as I played with his baby brother on the floor and said, 'Aunty Becky, I will miss you when we go.'
  8. If you could spend next year as a film character, who would that be? Perhaps Hermione Granger. I'd have the excitement and adventure that Harry Potter has, but without the fear for my own life, and without having to study hard at the same time to gain good grades because knowledge comes naturally to her.
  9. What new hobby did you take up/old hobby did you reinstate this year? Cross-stitch. I've completed two this year, one of which I began 15 years ago, the other 10 years ago! I've also started another and need to find the time to get stuck back into it. I'm not sure where that time's going to come from though.
  10. What one thing would you really like to do next year? The gym marathon that I was supposed to do in October, but which got postponed first by an interruption in breathing ability and then by the development of POTS.
  11. What has been your best discovery of this year? That Miller Brands make 200 beers worldwide that they assure me are safe for me to drink as they don't contain any of the things I told them I'm allergic to!
  12. What news story of this year has had the biggest impact on you/do you most remember? I have trouble remembering what news stories happened this year, but I think the seige on the Mumbai hotel happened this year. That had quite an impact at the time - it was so terrible. The other news story that dominated the headlines and was impossible to get away from was, of course, that of swine flu.
  13. What's the best film you've seen this year? 'Slumdog Millionnaire'
  14. What was your best buy this year? Probably my slanket
  15. What has been your best day out this year? Hmm, possibly the day that W and I went to Fountains Abbey back in March. It was freezing cold, pouring with rain by the end of the day, but a great day with a wonderful time at the deer park where we got within a couple of feet of some of the deer.
  16. Is there anywhere you'd like to visit next year? Italy! W and I are going in April for her sister's wedding ... though we do have to book it ... best get that sorted soon, I reckon.
  17. Name one thing you did this year that you'd like to do again? Go back to the cottage that W and I stayed at in Somerset. I'd also like to go to Longleat again, which would be easy to do from the aforementioned cottage as it's only a few miles away.
  18. Who gave you the best advice this year? Hmm ... a difficult one ... perhaps the advice that my mum gave me on my final project for the creative writing course I did earlier this year. I'm sure her advice helped me to get that first I mentioned before.
  19. What new skill would you like to acquire next year? Erm ... I dunno ... maybe something computery, like how to do something I should know how to do but don't ... not sure what though. I'll think about it.
  20. What was your favourite TV/radio programme this year? Possibly 'Survivors' that was based on the book by Terry Nation, and for which I've seen a trailer for a second series starting in the next few weeks :o) As for radio it's probably been the Radio 4 comedy 'Cabin Pressure'.

So that's my review of 2009 with a smattering of thoughts about the year to come. What are yours?

Thursday, 24 December 2009

Christmas special

This is a very quick post as I'm away in London for Christmas. I'm staying with my brother, sister-in-law, and two nephews, and have come down here from Edinburgh with my mum and step-dad. It's lovely all of us being together, and wonderful to having Christmas with the children. O is 3 years old now, and D is 15 months old.

Somewhere along the line O has misheard 'Away in a manger'. In this house we are all now singing 'Baby in a power ranger.' :oD If you tell O that it's really 'away in a manger,' he says, 'but I don't know that one. Let's sing 'Baby in a power ranger.'' :oD

HAPPY CHRISTMAS, EVERYONE!

Sunday, 20 December 2009

Officially potty

I went to my appointment with the prof at the falls and syncope clinic on Friday. She'd had a chance to look at my 24 hour ECG and accompanying 'events' diary from the previous week, and she confirmed the diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). After reading the information about it on gpnotebook, where I first discovered it, I'm not surprised that POTS has been confirmed, and in fact I'd have been more surprised if the diagnosis had been something else, but I'm still not sure how I feel about it. It's good to have an answer. It's good to know the reason for what's been happening. It's good to be able to put all the pieces together. However, it's not a great diagnosis to have. POTS isn't curable, and given that I was to have something else wrong with me it would've been 'nice' if it had been something curable. At least there's hope that some of the symptoms can be treated and the prof has prescribed diltiazem to try to reduce my heart rate. She said that my heart is beating so fast at the moment that it's not working effectively, so my brain isn't getting enough blood or oxygen, which is why I'm passing out. Slowing my heart should stop the fainting. I'm hoping too that slowing my heart down to a more normal rate will mean that I might have a bit more energy again, because at the moment my body's in over-drive and I'm knacked a lot of the time. I forgot to ask how long the diltiazem would take to work, and at the moment I'm on what seems to be a relatively small dose of 120mg and my heart is still running at least around 130bpm when I'm standing. I've only taken three doses so far - Friday, Saturday and today - and I'm guessing it might take a few days or a week or so for it to kick in, but then one of my friends who's a doctor suggested that it should start to work fairly immediately so now I don't know - is the drug just not working or is it going to take a while to work?

One of the things that I was really worried about was that whatever is wrong with me was going to stop me from driving. My car is my ticket to freedom and independence, and because of my asthma it would be so life-limiting to have my driving licence revoked. This possibility wasn't something I'd initially thought of, but my mother suggested it and then at the beginning of last week she said that I may have to prepare myself for the doctor saying on Friday that I wouldn't be able to drive any more or for a period of time. It was worry about this that made me forget to ask about how long the diltiazem would take to work, and I really didn't want to ask the question about driving, but knew that I had to. Thankfully she said that I can still drive :o) I am so very, very relieved. She said that in relation to this there are a few precluding factors to driving: 1) if the dizziness I have is vertigo (it's not though - the world isn't spinning, it's the stuff inside my head that feels like it's spinning); 2) if I was fainting a lot sitting down; 3) if I didn't get any warning before fainting; or 4) if I didn't have time between warning and fainting to pull over to the side of the road. The prof said that she could see how terribly life-limiting it would be for me if I couldn't drive any more, and while of course she has to do what is right for the safety of everyone, it's a huge relief that she's said that I'm still okay to drive.

While I'm wondering how to get my head around the diagnosis of POTS it does bring together a whole variety of things for me. It seems that many of the apparently unconnected bits of me that don't work properly can probably be joined up by POTS, for instance it seems that many people with pots have a lot of common allergies, a lot of drug sensitivities and a lot of uncommon food allergies. I haven't written a great deal about my allergies here, but perhaps I'll tell you a little more about them in the near future. They're certainly complex, and I certainly have many uncommon anaphylactic food allergies as well as common allergies and allergies to meds.

Another thing that the POTS can account for is the thickening of the vitreous humour (particularly in my right eye) that has so far been accounted for by the long-term high-dose steroids I take for my asthma, even though this isn't a known side-effect of steroids. This thickening has caused the development of large black floaters in my vision that are annoying and sometimes get in the way when I'm reading. They're also a reported symptom in POTS.

Postural Orthostatic Tachycardia Syndrome is a neurological condition - a dysfunction of the autonomic nervous system (that's the part of the nervous system that controls the body's automatic functions). The digestive system is controlled by the autonomic nervous system, and the prof told me that the POTS is most likely accountable for the Irritable Bowel Syndrome that I've had for several years, and it may also explain some of the upper right abdo pain I get, although this has previously been put down to cholecystitis and ulcers caused by the prednisolone and theophylline that I take for my asthma. It could, I suppose, be a combination of all three things. Another thing that the autonomic nervous system controls is sweating, and for a long while there have been times when I've had excessive sweating. This is embarrassing and makes me very self-conscious when it happens, but apparently this too can be attributed to the POTS.

There are various other 'little' things that the POTS diagnosis pulls together (including the non-asthmatic chest-tightness I've been getting, and maybe even weight gain), and suddenly it all makes sense. How I come to have it though is perhaps something we'll never truly know the answer to. It seems there are various causes of POTS, including viral and bacterial infection (pneumonia is particularly mentioned) and Lyme Disease, which I had back in 1997 when on holiday in Canada (and I actually haven't been off the steroids for my asthma since a month or two after this). There's also the possibility that it could, in my case, be caused by some of my asthma medication, so there's uncertainty around whether my POTS is primary or secondary, and I'll probably never know for sure, but that doesn't really matter because it doesn't change what's happening or the effect of it on me. The only thing the cause of it could effect is the prognosis. While it's not curable, about 50% of people who develop it after a viral infection get some relief after two to five years, while others who develop it for some other reasons have a very poor prognosis with distinct possibility of deterioration over time. I guess I have not to get too hung up about this aspect of things though and just get on with it. The important thing now is to work out how to live alongside this new companion.

There's certainly no denying that I am now officially potty.

Wednesday, 16 December 2009

Full speed ahead

I know that it's an age since my last blog entry, but things have been rather busy here in relation to the whole passing out thing. I mentioned in my last post that I was thinking of phoning the secretary of the consultant who was supposed to have referred me to the falls and syncope clinic. I did this the following day - last Monday - only to get through to a voicemail message saying that she was out of the office until 14th December. This meant that nothing was likely even to begin to get done about my referral, and I couldn't chase it up, until this week, which is a long time when you're fainting at least once everyday.

In my desperation for some kind of answer I went trawling the net again. I know there are huge dangers in looking for health information on the internet, but I really didn't know what else to do, so I went to my usual starting place - gpnotebook. I'd looked on here before in relation to these events and not come up with much, but for some reason, on this occasion, I very quickly found myself looking at a page I hadn't seen before and could hardly believe what I was reading as so many of the things listed under the clinical features fitted my symptoms. It was a page on Postural Orthostatic Tachycardia Syndrome (POTS). I'd never heard of this before, but as I read it I couldn't help exclaiming to the cat again and again that I thought I'd found what the problem is, but then I had the dilemma of what to do with this suspicion, and in the end I hit upon the idea of printing the info off, highlighting the symptoms relevant to me, and taking it to my GP. I know that a GP's heart can sink when a patient arrives with internet-acquired info, but I really didn't have anything to lose given that I was getting nowhere fast with the consultant, his secretary, and the previous GP I'd seen (the one who'd initially had me admitted to hospital, but then sounded exasperated and said there was nothing more she could do when I phoned her after my discharge).

First thing on Tuesday morning I rang the GP surgery, asked for an appointment with one of the GPs who knows me well and got one with Dr Cg for 11am. Because I haven't seen him about any of this passing out stuff I first had to explain what had been happening, about the admission to hospital, how pointless that seemed to be, how the consultant had failed to refer me to the falls and syncope clinic, and that now his secretary is away so nothing will be done for at least another week. Then I told him that his heart was probably about to sink and I gave him the info about POTS, saying that I'd found it online and wonder if this could be my problem. I was very pleasantly surprised by his receptiveness to the internet info, but I think this was helped by the reputability of gpnotebook (he said that he uses it himself sometimes, and I know that several of my doctor friends use it too). He read the info on which, as I said before, I'd highlighted the clinical features relevant to me, and to which I'd also added some other annotations to expand on some points. We then discussed it and he agreed that POTS may well be what I have. He gave this as a provisional diagnosis, but said that it needs to be confirmed (or otherwise) by the specialists, and they are the consultants at the falls and syncope clinic. My GP was aghast at the failure of the consultant I was under as an in-patient to refer me to the clinic, and said that I needed to be seen as soon as possible. I told him about my fainting whilst cooking just a few days earlier, and that my heart rate had gone up to 180 bmp (!) on the Sunday evening when I was changing my bed sheets (usually my carer does this, but the cat had been sick all over them, and I wasn't going to sleep in cat sick so I had to change the sheets), and he already knew that I live alone. Dr Cg said he'd fax through a referral himself, that he'd write 'URGENT' on it in big letters, that he'd write it in red even though the colour wouldn't show on the fax, and that he'd list some of my risk factors. I got the impression he was saying to the clinic, 'This case is urgent. No, I mean it. I really mean it! You absolutely must see this patient, because I really, really, really mean that this is URGENT!!!' He said that I ought to have an appointment for two or three weeks time. This still felt like a long wait, but a heck of a lot better than the nine weeks I'd been quoted by the clinic, and that's nine weeks after the referral has reached them, been read, and been processed. I went home finally feeling like I was getting somewhere.

On Thursday morning I went up to Freeman to be kitted out with the 24 hour ECG equipment, which did produce the predicted blisters despite the extra antihistamines, but I had little choice but to put up with it as it was important to get it done. Although I was feeling rubbish and didn't really want to do anything much I knew that lying on the sofa wasn't going to give a clear picture of what's been happening with me so I forced myself to be as active as possible, which isn't very active at the moment, but it's more than being stationary. Spending more time being upright meant that I spent more time doing unplanned close floor inspection, which is usually a very bad thing, but on this occasion it meant that I could record it in the events diary I'd been given and the docs would be able to see if the fainting related to anything going on with my heart. It was a tough day. During the afternoon, though, I received a phone call from the falls and syncope clinic telling me that they'd had a referral for me from my GP who thinks that I need to be seen quickly (he'd obviously been effective in his insistence that this is an urgent, and I mean URGENT referral), and would it be possible for me to go along to the clinic the next day! Of course it would! I couldn't believe it. Only a couple of days earlier I had no referral, thought I was going to have to wait until at least February or March to be seen, and now I had an appointment for the next day! Amazing!

So on Friday morning I first of all went up to the Freeman to drop off the 24 hour ECG kit. I asked who the results would be sent to and was told it would be the referring consultant, which is no good to me as I have no follow up with him - not surprising given that he's a gastroenterologist on the drying-out unit, but I somehow ended up with him as my consultant. I asked if the results could be sent to my GP, and was told that they could be if I wanted them to be, but the technician did look rather surprised at the request for some reason - weird. Anyway, with that sorted, I went straight over to the RVI to the falls and syncope clinic where all the staff were very lovely :o) I was seen very quickly and taken through to a kind of testing area with several curtained-off beds each with a set of monitoring equipment. They did a couple of pretty basic tests - primarily lying and standing ECG and BP, and continuous BP at rest for 5 or 10 minutes before the standing bit - and then I was taken through to see the consultant. She was lovely too, and is a professor with a particular interest in POTS and fatigue. She took a full history, asked various things to do with life-style and any other health problems I have, especially those requiring hospital over-seeing, and then, even before I mentioned it, she said that heamodynamically I fit the criteria for Postural Orthostatic Tachycardia Syndrome. However, just before I could ask for my honourary medical degree for my success in self-diagnosis ( ;oP ) she said that she wanted to see the results of my 24 hour ECG before confirming or rejecting the diagnosis. She looked on the computer there and then to see if the results had been processed, but seeing as I'd only handed the kit in about an hour before hand I wasn't surprised that they weren't on the system. She wants to see me again this week, and I have an appointment for 9am Friday when the ECG results will definitely be through and the prof will have had a chance to look at them. It's so good that I'm being see so quickly, though I have to say that it's slightly unnerving that the prof wants to see me two weeks running, because that never happens in out-patient clinics unless there's something to worry about. Mind you, I'm worried anyway. So on Friday I may come away with a diagnosis, and with that I may be able to start some kind of treatment, and that may help me to begin to feel better and not be passing out everyday. It would be so good not to have my heart pounding away at a rate of knots almost all of the time, and not be almost afraid of standing up because it's going to get unbearable and I'll end up passing out, or at the very least feeling really ill. Unfortunately, if I do come away with a diagnosis of POTS then the first line of medication treatment that's most effective for most POTS patients is a no-go for me - beta blockers. As the name suggests, they block the beta receptors, which are the exact receptors that some of my asthma meds stimulate. If I were to take beta blockers then I would quickly die from a severe asthma attack. There are one or two other options, so it seems, but I'm not going to look too closely into any of them until I know for sure whether or not this is Postural Orthostatic Tachycardia Syndrome, or if it's something else. However, what I have learnt is that if this is POTS then none of the treatments are curative, but rather they manage the symptoms. If I'm going to have to have something else wrong with me, which it seems that I am, then it would be quite nice if it were something that could be cured ... for a change. From my conviction that I'm right in my self-diagnosis, I suspect that God isn't planning on my having something curable, which is a bit pants if you ask me, but whatever it is my only option is to find a way through, a way forward, and to adapt to another change in life. I predict that I'll get fed up and have tantrums, but I also predict that I'll survive and I'll find ways to live life to the full, even if I have to check out the floors of all the places I go.

Now then, it's stupid o'clock and I should be in bed so I'm going to make up a hot water bottle and take myself off to the land of nod. If I don't get back to you before, then I'll certainly let you know how things go on Friday.

Sunday, 6 December 2009

Saving my bacon

I was supposed to have my swine 'flu vaccination at the GP surgery on Tuesday. I went along to the appointment, the nurse went through the usual precautionary questions, and then we went through the ingredients of the vaccine and it turned out there was something in it I'm allergic to - a sulphate. She went through to speak to one of the doctors who said that in light of this, they couldn't give me the jab without my first speaking to my asthma consultant, especially as it transpires that a lot of people with multiple allergies are having adverse reactions to the injection. I came home, rang my consultant and left a message with his secretary, who phoned me back on Thursday saying that Dr H (my consultant) had weighed up the risks and decided that I should have the swine 'flu vaccine, but that they should give it to me in hospital, so I went up to the ward on Friday morning. It was a very strange experience waiting to be injected with something I knew I was allergic to - planned anaphylaxis ... very odd. I wondered if it was something similar to being on death row, although for very different reasons - ultimately to have my life saved, rather than certainly ended.
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Dr. H came to see me before the ward round, went through the risks (i.e. anaphylaxis and death!), got me to sign the consent form, and then had the F1 put a cannula in so that I could have IV chlorphenamine (Piriton) before being given the vaccine. This would hopefully stave off an allergic reaction, although it would also make me sleepy.
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J, the Charge Nurse, came with the IV and the jab, asked if I was ready, pumped me full of chlorphenamine, waited 5 minutes for it to whoosh around my body, then stabbed me in the arm with the potential killer jab. All we could do then was wait and see what happened, but at least I hadn't blown up into a Becky balloon and dropped dead immediately. After a while my lungs started to get tight and my sats dropped to 91%, but they were sorted with a couple of oxygen-driven nebulisers, and everything else was okay, thanks to the prophylactic chlorphenamine. I stayed on the ward until just gone 7pm to make sure all stayed okay (there can be a delay in the occurance of a reaction, and if there has been a reaction (which the lung-grumpiness was almost certainly due to) there can be a second wave reaction later), and then I was free to go home. It was a weird experience walking onto the ward in the morning as I'm usually gasping and struggling to breathe at all when I arrive on Ward 29, and it was even weirder to walk off the ward the same day ... a good experience though :o) And hopefully, I'll now be safe from getting swine 'flu :o) My bacon has been saved!
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The same cannot be said regarding the whole passing out thing, which is still going on. When I was discharged from hospital the week before last with this the doctor had said that I should get an appointment for the falls and syncope clinic for two weeks time, which would mean I ought to be seen next week. This being the case I was expecting an appointment letter sometime during last week, but nothing came so I phoned the clinic on Thursday to ask what was happening. When I explained what I'd been told about getting an appointment for two weeks time the receptionist laughed and said that there was at least a nine week waiting list. She then went on to tell me that the consultant hasn't even put the referral in yet! The swine! Not only has he not done what he said he would, but I was told porkies about the time-scale, so now goodness knows how long I'll have to wait. I'm going to call the consultant's secretary on Monday to ask when I can expect the referral to be sent, and perhaps say that I'm not impressed that it hasn't been sent all ready as it's really not good to be passing out practically everyday, and not safe either - I fainted while I was cooking the other day, and it could've been really bad if I'd fallen onto the hob ... although it may have speeded up the referral, I guess ...
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On a positive note, I have got an appointment for the 24-hour ECG, which may throw some light on what's going on, but only if it's something to do with my heart. Anyway, I go for that next Thursday morning, and then obviously have to go back on Friday morning, but I don't know when I'll get any results from it, or even who the results will be sent to as the referral to the falls and syncope clinic hasn't yet happened and I'd thought it was going to them. I might ask if it can be sent to my GP so that I can at least know it's going somewhere, and somewhere I can access them.
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Now then, keeping on the theme of pigs - having my bacon saved from swine 'flu, swines of doctors who don't do what they say they're going to, and flying pigs for getting appointments - I was sent an email the other day that made me laugh a lot. I thought I'd share it with you so read on for a giggle. Oh, and apparently it really was sent to David Milliband.
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Nigel Johnson-Hill
Park Farm
Milland
Liphook
GU30 7JT
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Rt Hon David Milliband MP
Secretary of State.
Department for Environment, Farming and Rural Affairs (DEFRA)
Nobel House
17 Smith Square
London
SW1P 3JR
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16th July 2009
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Dear Secretary of State,
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My friend, who is in farming at the moment, recently received a cheque for £3,000 from the Rural Payments Agency for not rearing pigs. I would now like to join the "not rearing pigs" business.
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In your opinion, what is the best kind of farm not to rear pigs on, and which is the best breed of pigs not to rear? I want to be sure I approach this endeavour in keeping with all government policies, as dictated by the EU under the Common Agricultural Policy.
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I would prefer not to rear bacon pigs, but if this is not the type you want not rearing, I will just as gladly not rear porkers. Are there any advantages in not rearing rare breeds such as Sadlebacks or Gloucester Old Spots, or are there too many people already not rearing these?
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As I see it, the hardest part of this programme will be keeping an accurate record of how many pigs I haven't reared. Are there any Government or Local Authority courses on this?
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My friend is very satisfied with this business. He has been rearing pigs for forty years or so, and the best he ever made on them was £1,422 in 1968. That is - until this year, when he received a cheque for not rearing any.
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If I get £3,000 for not rearing 50 pigs, will I get £6,000 for not rearing 100? I plan to operate on a small scale at first, holding myself down to about 4,000 pigs not raised, which will mean about £240,000 for the first year. As I become more expert in not rearing pigs, I plan to be more ambitious, perhaps increasing to, say, 40,000 pigs not reared in my second year, for which I should expect about £2.4 million from your department. Incidentally, I wonder if I would be eligible to receive tradeable carbon credits for all these pigs not producing harmful and polluting methane gases?
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Another point: these pigs that I plan not to rear will not eat 2,000 tonnes of cereals. I understand that you also pay farmers for not growing crops. Will I qualify for payments for not growing cereals to not feed the pigs I don't rear?
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I am also considering the "not milking cows" business, so please send any information you have on that too. Please could you also include the current DEFRA advice on set aside fields? Can this be done on an e-commerce basis with virtual fields (of which I seem to have several thousand hectares)?
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In view of the above you will realise that I will be totally unemployed, and will therefore qualify for unemployment benefits. I shall of course be voting for your party at the next general election.
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Yours faithfully,
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Nigel Johnson-Hill

Wednesday, 2 December 2009

Good things

While I'm having a rough time physically at the moment I think I need to spend a bit of time thinking about the good things and appreciating the positives. It can be all too easy to get trapped in the misery cycle, and sometimes making space to think about what's good in life is enough of a pick up to keep motivated, so here's a little list of some of the good things in life:

  • Friends. They are a wonderful gift and friendship is one of the most valuable things you can be given. I'm very lucky to have the amazing friends that I do.
  • My slanket. This is my new favourite possession and I now firmly believe that every household should have at least one.
  • The cat - Zach. He's completely nuts so keeps me entertained; is very cuddley (when he's not eating me!); and is great company.
  • A long lazy bath and freshly pumiced feet. Ah, the little things...
  • Heinz baked beans - the tasty, nutritious, Becky-friendly standby when cooking is too much to think about (I had them for tea tonight).
  • My nephews. The oldest one is three today and I spoke to him on the phone this evening. Both he and his brother (who's fourteen months old) never fail to make me smile :o)
  • Books. They feel good; they smell good; and they're easy to get lost in.
  • BBC Radio 4. It's an education. It's funny. It's interesting. It's dramatic. It's entertaining. Sometimes it can even be a little boring :oO but I listen to it anyway and often learn something.
  • Pyjamas - sheer comfort.
  • Music. I love listening to it and love making it. I managed to get to Christmas Choir practise last night and it was fantastic to be able to sing again for a bit. I was completely wiped out afterwards and today, but it was worth it.
  • Wednesday mornings when my carer comes. Once I've let her in the flat she usually sends me back to bed either to sleep or to listen to the radio and drink the cup of coffee that she always makes me as soon as she arrives.
  • Good neighbours. For many years I had horrendous neighbours in the flat above, but for the past three years or so I've had a lovely couple living above me, who keep an eye on me and always ask if there's anything they can do to help.
  • Creativity. I love it that I can do arts and crafts, and get pleasure from making things for people. I made my nephew's birthday card the other night and was really pleased with the result, but the real joy was that he liked it too and made a point of thanking me for it (and 'all the lovely birthday parcels') on the phone this evening :o)
  • An active mind. Sometimes when the body isn't up to much it can be frustrating to have such an active mind as I want to be doing all the stuff that I'm thinking about, but mostly it's good. It keeps me occupied. It keeps me interested in life, and life beyond myself. It gives me the ability to read and enjoy all sorts of things.
  • Comedy. I love a good laugh. I should sort out another trip to the Hyena Comedy Cafe with friends. It's not exactly cheap, but it's good fun ... maybe something to do in the long, dark days after New Year to help us giggle our way towards spring.
  • Better deals on utilities. I had a call from Virgin Mobile yesterday offering me a better package on my mobile phone than the one I already have with them - more minutes, more free texts, less money, and 3 months completely free as I was happy to keep the handset I've got. Hurrah!
  • Hot chocolate. Mmmmmmmmmmmm.

Ya see? Life's okay really. Sure, my body's not working very well at the moment, but all in all I do okay, with the best of people and the best of things - both big and small - that keep me ticking over. I have a heck of a lot more than a lot of people in the world, and for that I'm grateful.

What are you thankful for in your life? Maybe we can remind each other of some of the things that we take for granted but really ought to take more notice of.

Thursday, 26 November 2009

All the king's horses and all the king's men

I have been in hospital again since I last posted, but this time not for my lungs. Last Thursday afternoon I got fed up with this passing out and dizziness thing so I phoned the GP surgery to see if by any chance they had any appointments for that day or the following. I spoke to one of the receptionists who I know very well and she said that they only had emergency appointments. I said that I didn't think it was an emergency but told her what had been happening, and it seems that my idea of a GP emergency is very different from theirs and the receptionist urged me to take one of the emergency appointments for early that evening. I did. I went up for 5.30pm and was seen by the on-call GP at around 5.50pm. She was very concerned, decided that I needed to be in hospital and was all for calling an ambulance. I said that I didn't want an ambulance - I spend too much time in them and don't like them (and I also didn't think that my situation warranted one) - so she asked how I'd get up to the hospital and I told her that I was certain a friend would take me. I think she thought that I wouldn't go to hospital and said, 'Well ... okay ... but you must go to hospital and you must go today.' I promised that I would and then I went back to the waiting room while she wrote the letter for the hospital. As it turned out, the EAU (Emergency Admissions Unit) at RVI didn't have any beds at that time, but were expecting to have one around 8pm so I was to go up for then. This actually worked out better for me as it meant that I could go home, get my hospital case and sort out one or two other things, although none of this was easy while feeling so poorly.

My friend J took me up to EAU, and we were there for around 8.30, but it didn't matter that we were a little late, and it couldn't be helped anyway as J had work and family stuff.

The initial thought (mine, my GP and the hospital docs') was that maybe the anaemia was causing the fainting, dizziness, increased non-asthmatic breathlessness, palpitations and occasional slight chest 'discomfort', and that perhaps my Hb had dropped even further, but actually my Hb had picked up a bit. At 9.7 it's still low, but that's certainly better than the 8 it was at, and although it's possible that the anaemia is causing the symptoms it seems unlikely. I was admitted beyond EAU (you can be sent home from EAU after an initial assessment) for further tests and at 1am I was transferred to one of the holding wards at RVI. For some reason, at 3am they suddenly decided that I needed a chest x-ray! Why? I wasn't in for my lungs. I still have no clue why they did it and why, given that my lungs were in their normal post-hospital state, nor why it had to be done at 3am. I rather suspect that it happened to be a time that the radiographer had nothing to do. Then they did an ECG, which I can understand, but it's all very complicated as I'm allergic to the ECG electrode pads - my skin blisters - so it was a matter of get the stuff ready, get the pads on and the wires plugged in, get the ECG done, get the pads off, and immediately wipe away any residue of glue/conduction gel with alcohol gel. The trouble is that ECGs will only pick up what's going on at the particular time, which is about 1 minute duration, so nothing transient or intermittent is going to show, and sure enough, all the ECG showed was that I was tachycardic, which I could've told them anyway.

In the morning I had two doctors come to see me, one of whom stayed very quite while the other talked at me. He turned out to be a consultant. He said that my symptoms could just be a reaction to having been ill recently, or that it could be vasovagal syncope, but beyond that he wasn't very sure but didn't think he'd do any more tests at this time. He went away. I found this very unsatisfactory given that I was passing out about once a day and feeling dizzy pretty much all of the time, and that all vasovagal syncope really means is 'faint', and being told that I might be fainting because I'm fainting didn't seem like a good enough reason to me because people generally don't just fall about the place for no reason. I told one of the nurses that I wasn't happy and she got the more junior doc to come back to me (I don't think he was very junior - maybe an ST1, ST2 or an SpR). He was much better on his own, much more receptive and actually listened to me. I told him that I didn't agree with the consultant's suggestion that it may be a reaction to having been ill as I live in a state of chronic illness, and while I'd had an acute exacerbation I've had worse attacks before and this has never happened after any previous attacks. He agreed. I also said that vasovagal syncope wasn't really an explanation of any kind, and actually how could they know this is the cause if they weren't going to do any kind of test for it. He looked a bit awkward, was surprised that I actually knew what vasovagal syncope is (I think they'd been hoping to pass me off with a long, impressive-sounding word), and then said I probably needed to be in hospital a while longer to keep me safe if nothing else, seeing that I live on my own. I wasn't thrilled with the prospect of another admission, especially as I'd only been out of hospital for 9 days or so, but at the same time I wanted something to be done, or at least looked into. I was transferred to ward 16 at Freeman Hospital a little later on. I'm still puzzled as to why I was on Ward 16, because although it is ostensibly a general medical ward, it's actually more specifically a gastro ward, and more specifically still a drying-out unit. Not really where you'd expect to find someone who's passing out, and unfortunately this was reflected in the care that I got as they seemed to have little clue what to do with me. I didn't see a doctor at all over the weekend, even after passing out in the bathroom, and I ended up feeling as though I was having to do all the thinking of possible causes so I wrote a list and gave it to the docs when I did eventually see them on Monday. To be fair, the two docs I saw on Monday were nice and were, more importantly, receptive to my suggestions and went through them. They agreed that although some of my symptoms suggest vasovagal syncope they don't entirely fit, and also there still has to be a reason why the vagus nerve would be being hypersensitive. We'd eliminated orthostatic hypotension as a possible cause by doing lying and standing BP, and while my BP dropped a bit on standing it was only by about 10mm Hg and still within normal range. The registrar said that while it was unlikely that the anaemia's causing it as my Hb is picking up, it is still a possibility in which case it should resolve itself as my Hb picks up further, and that should happen as the supplemental iron gets further into my system. I suggested that maybe it's an inner ear thing. She didn't think it sounded quite like that, but said that the F1 (junior doc) would come back and have a look in my ears to be sure, but actually that never happened. The other possibility is that it's something to do with my heart, perhaps it skipping a beat, and she said that they'd do a repeat ECG, although again this would only be a one minute snap-shot of that particular moment so wouldn't necessarily be terribly helpful. However, she said that they would order a 24 hour heart trace, which will be 'fun' given my allergy to the electrode pads and I think I'm just going to have to dose myself up on multiple antihistamines for the duration and put up with some skin blistering - better to have that and maybe get an answer than have no chance of getting an answer. She's also referred me to the falls and syncope clinic so I'm now waiting for an appointment for that to come through, but it will be a couple of weeks at least till I'm seen there. In the meantime I've been discharged. I'm no better than I was before I was admitted and I'm still falling about the place randomly. I'm hoping that it will resolve itself just as it started, but there aren't any guarantees, and while it's still happening I'm scared and I feel very vulnerable. My friend S who's a GP was surprised that I was discharged home without any review of care needs, given that I live alone and there's a very real possibility that I could crash to the floor and crack my head on the furniture or break a bone; and the hospital chaplain was also very surprised. He tried to say something about this to one of the nurses and was flabberghasted by the unconcerned 'uh huh' response that he got. Since I got home he's been ringing me every so often to make sure I'm okay, or as okay as can be expected in the circumstances, and he's also been in touch with the charge nurse on Ward 29 to let him know what's been going on (nobody on Ward 16 thought to contact my regular care team even though this all started getting a lot worse very shortly after my admission on Ward 29). The charge nurse has since phoned me twice to see how I am, and has said that he's concerned about me. He also said that he'll tell my consultant what's been happening, so at least there's joined up care there, even if it's atrocious that this has had to be instigated by the hospital chaplain.

As you may expect, I have very little energy at the moment, and I'm quite emotionally drained by the whole thing too, but I've had to put what energy I do have into sorting some practical things for myself - things that Ward 16 should really have done. I already have the community care alarm in my flat, but I called them yesterday to ask for a review of needs and they've been out this afternoon. They're going to get me a falls detector, which I think must detect the speed that you go down otherwise it would go off if you lay down in bed I suppose. I don't know when I'll get that, but I think I remember them being quite quick when I got my initial alarm. The other thing I've done (and it makes me cross that I've had to do this myself as this really is something that Ward 16 ought to have done) is contacted social services for a reassessment of care needs. Now obviously I'm hoping that this is a transient thing that will resolve itself, but there aren't any guarantees, and at the moment I'm not particularly safe. I don't want 24 hour care if I can avoid it, because I don't want to feel like I've got someone peering at me all the time, but perhaps someone popping in to check that I'm not crashed out on the floor bleeding to death from cracking my head on the furniture or something, or maybe even someone to do some cooking as I'm not really terribly safe using the cooker at the moment in case I pass out while I'm doing that. It's all very difficult and I don't know what the answer is if I'm honest, but I think I need a reassessment so I phoned them yesterday and explained the situation. They were very nice and said to leave it with them, which I did and they've been in touch this morning. The earliest they can come out is the end of December. They said they have me down for Christmas day! Well that's not going to happen, is it, partly because I doubt they work on Christmas day, and secondly because I'm going away for Christmas. It looks like it'll probably be around New Year's Eve, and actually I'm away from 19th-30th December, so I'm guessing that it could even be early January before they can get to me. Not ideal, and I'm not terribly sure how I'm to get through the next 5 weeks or so if this continues, although my friends have been keeping a close eye on me since I got home on Tuesday evening, which is lovely of them. As I said before, it makes me cross that I've had to do the phone-running and organising all this myself, and if it weren't for some of my friends who either work in the system or know the system then I wouldn't have a clue where to begin, which then makes me angry for others who may be left in a similar situation to myself and don't have the knowledge of friends like I do. It's all very unsatisfactory.

So here I am, back at home, feeling ill, no better than before I was admitted to hospital on Thursday, still falling about the place on my own, no reassessment of care needs for 5 weeks or so, and no diagnosis as yet. At least I have a referral to the falls and syncope clinic, even if I do have to wait a couple of weeks for the appointment (and maybe longer as the hospitals are moving over to a new electronic system of some kind that nobody seems very sure how to work, so the chaplain said that I may need to do some chasing of my appointment. Joy). I'm scared. I'm trying not to worry, but I am scared and I feel very vulnerable, and sometimes I feel down right miserable. I also feel quite helpless and don't know what I can do about that.

Friday, 13 November 2009

A bit of a mix

I'm home. I got home on Tuesday evening after a lengthy wait for some of my meds that had inadvertently been left by the pharmacy hatch rather than being sent up to the ward. They'd been ready for three hours when they were finally located and then collected. Oh well, such is life. I never expect a quick getaway from hospital so I just get on with the wait and while away the time (or should that be 'wile'?). Anyway, I got home in the end and it's great to be here. The cat has been ever so cuddly >^..^< It's wonderful to be in my own surroundings with my own things and no hospital clatter :o) The only thing is that I'm exhausted and finding it hard work being at home too. My lungs aren't fairing too badly given how recently I've been discharged. The main problem is the anaemia and the iron. It's wonderful that the pharmacist managed to find a preparation of iron that I'm not allergic to, but I am having other side-effects - gastrointestinal effects that are getting me quite dehydrated, even though I'm trying to drink loads of water. I'm told these effects should wear off fairly soon, but in the meantime it's not pleasant and isn't helping me achieve a general feeling of wellness. And there's the anaemia itself. My Hb was still around 8 when I was discharged, which was a bit controversial, but as I have a suppressed immune system, and I'm a sitting target for infection the longer I'm in hospital, it was thought that I'd probably be better off at home. I agree, except that I don't feel great and I can't do very much of anything ... even staying upright is a bit of a challenge at times so I'm spending a lot of time sofa surfing and thinking about doing some study to catch up, but I don't have the mental energy to concentrate :o( I must get my head around some study at some point though, because I'm getting quite behind with my course now. I'm hoping that the gastro effects of the iron will soon sort themselves out, and that then I'll feel a bit better in that respect. The iron will take several weeks to have full effect on my Hb (so I'm told), but I should hopefully begin to feel some benefit much before then. I have to go for blood tests at my GP surgery the week after next to check that my Hb is starting to come up, and if it isn't then they're to look closer into the cause of my anaemia, but I sincerely hope that things are significantly improved.

One of the very disappointing things of this whole situation is that there's no way that I'm going to be up to doing my gym marathon on 25th. I know it was an (over) ambitious date to set in the first place, but I needed to set a new date when I did ... and now I'm going to need to set another one. This is something I desperately want to do, and I will do, but I'm not going to be stupid and do myself in in the process. I want to do it before Christmas, and I want to do it before the pre-Christmas craziness gets too crazy, so I'm now proposing to do it on 15th December. This gives me four and a half weeks from now to get back on track with health and fitness, and is hopefully more realistic than 25th November. I am disappointed, but I know that I'll do it, and in the end there'll be an even greater sense of achievement. Oh, and it gives people more time to sponsor me, or donate through my Just Giving page.

So yeah, a bit of a mix - it's great to be home. It's great to have my creature comforts and be with my little black creature (the cat). It's not so great feeling not so great and being so worn out. I'll press on and come through in the end, and while I wait I'll snuggle up in my cosy new slanket that I'm loving :o)

Monday, 9 November 2009

Sensitive

Friends are a wonderful gift and something I value most highly. I am extremely thankful for all my friends and know that life without friends is a very lonely life...



...And this is where this post gets extremely tricky. I don't want to come across as selfish, self-pitying or bitter - I'm not - but there's something I want to say that might be challenging.



Life is fragile and this is something I'm confronted with everytime I have a bad asthma attack. I am almost always faced with the very real possibility of my death, and however many times this happens I never get used to it. It's been previously said to me by friends that I've got through the attacks before so I'll get through again, but this isn't necessarily the case and it actually makes me feel pretty isolated, because it's a denial of the reality of the situation. It denies my experience. It denies the truth. It negates my fears. I know it's a defence mechanism for them so that they don't have to think about mortality - mine or their own - but it's unhelpful. The fact is that each time I go into crisis I am fighting for my life, and the fact is that I've already out-lived my life expectancy.



Asthma attacks are not only frightening, but also extremely lonely experiences. When I'm in the midst of a crisis I can't breathe enough to speak. I can't tell anyone how scared I am. I can't ask for anything I might want. There may be plenty of physical contact but it's from professional carers and almost exclusively involves the touch of a stethoscope, the prod of a finger, the jab of a needle, invasive and painful blood tests. Of course I appreciate that this is all absolutely necessary in the attempt to keep me alive, but it's all so impersonal and clinical ... and lonely. What I crave for at these times is not only for my life to be saved, but also the gentle touch of a friend; the company of somebody who cares about me for me; someone to hold my hand; or just have someone be with me, sit with me, help me through by being there with me. I truly appreciate how difficult it must be to watch someone you care about go through the experience of a severe asthma attack, but I don't believe it's actually as difficult as going through it. I also appreciate how difficult it is to be made to confront the reality of death and to consider your own mortality, but again, I don't believe that's as difficult as having a head-to-head with death. Now I'm not saying that I want crowds of people or a bedside vigil when I'm in crisis, but the company of a friend and that possibility of caring, non-clinical touch would sometimes be so very much apreciated. Yes, this has happened sometimes, and W in particular has been amazingly wonderful in this and many, many other respects, but usually people stay away until I'm well on the mend ... perhaps easier to face ... guaranteed to stay alive in the immediate moment. Of course these visits are extremely welcome and very important to me as well, but in a different way.



I entirely understand that people have busy lives and that they need to get on with them. I don't want to be the centre of attention. I don't want to appear to be ungrateful for all that my friends do for me and the time they give me when they do visit ... it's just ... Well, I need people when I'm desperately ill, when I'm scared, when I'm trapped in the isolation of my head because I can't tell anyone my fears or my needs because I don't have the breath. I need people to sit with me and just hold my hand when I'm in that post-attack big sleep. I may only be intermittently aware of their presence, but the fact that someone cares about me and is prepared to sit and be with me during those times fills me with hope, appreciation, love, and thanks. I know that it's boring sitting with someone who's asleep. I know that it's still difficult witnessing the aftermath of the struggle for survival, but it's through that struggle and in the aftermath of it that I most need love and support...



... I don't want to die alone or lonely. Would you?









********************


This has been very difficult to write and I've been very unsure about posting it. I don't want my friends to feel unappreciated or got at. I just want to be honest, tell it how it is and maybe make all of my readers consider what they can do to help someone in the moments of life and death. Even if you feel that what you are doing is nothing, or that there is nothing that you can do, the fact of being there can be the most valuable thing you can do or give.

Sunday, 8 November 2009

As expected

It happened. I splatted. I just about lasted the Thursday, although I was going downhill significantly by the evening and knew that I’d end up in hospital by Friday. I think I mentioned that I had to go to my GP early on the Friday morning anyway for my blood results, the conclusion of which was that I’m anaemic and they didn’t know how to treat it because all the iron preparations they could find had something in that I’m allergic to. After we’d talked/gasped through the blood results the doc asked, ‘So how is the breathing?’ which really was a rhetorical question in the circumstances. My short answer was, ‘Rubbish. I’m going to hospital after this,’ and I’m sure that had I not told her I was going to hospital, going directly to hospital and not passing go, that she’d have called the ambulance there and then. She looked fairly reluctant to let me out of the surgery in the first place, but I just about managed to explain that I’d seen my consultant the previous day and we had a plan.

I got home and I got worse, probably precipitated by trying to walk and by having to make various phone calls to the hospital to get hold of my consultant. By this time my fantastic friend W had come over, ready to take me up to the Freeman as soon as we heard back from the consultant’s secretary to say that the ward had a bed for me, and within fifteen minutes of the call we were on the ward ... and I was going further downhill. I think that once I get to hospital sometimes my body kind of knows that it’s in a safe place to let go and I get worse ... it’s a bit weird really, but it’s happened on more than one occasion. So anyway, from then it was a long, hard battle, with the intensive care docs coming up to see me regularly and phoning the ward to check on me at other times. I really, really hate ITU so was relieved to struggle through without having to go there, but I know it was a close call. It took something like 22 hours for things to eventually settle to a more manageable state, and of course afterwards I was completely exhausted so I fell into my post-attack big sleep. My lungs still weren’t great, but they were a whole lot better than they had been on admission and I was able to sleep reasonably well, until I had a very rude awakening on the Sunday morning with my lungs having gone into tight spasm again and I was right back at the beginning. I had another 20 or so hours of battle and ITU coming up and phoning up regularly, and with being so exhausted from the previous struggle to breathe it all felt so much harder. Somewhat amazingly I got through it without having to be taken downstairs, but it was a close call again. It really is horrible. It’s a full day’s run at a sprint, unable to stop for any kind of rest, with no breath or energy to eat to keep you going, and barely able to drink because you’re putting everything you have into breathing quite unsuccessfully and timing the two things so that you don’t choke isn’t easy. Add to this the feeling that you’re trying to breathe through a tiny straw with a pillow stuffed in the end and you get a fraction of an idea of what it’s like.

I made it through. I survived. I fell back into that exhausted and exhausting big sleep and I stayed that way for three or four days, through lighter chest-tightness that the nurses recognised and treated as required, but I was too exhausted to wake up very much for. It’s a strange experience, though it’s not an alien experience for me.

Now I’m mending, with the aminophylline drip down and the oxygen reduced to two litres (I was on 60% so that’s a huge improvement). I’ve been out of bed a few times – the first time only for one exhausting hour, but the next day for four hours, and today I’ll push myself for a lot longer. I need to if I’m to get home, and I’m hoping for that around Tuesday, provided I can get off the oxygen easily enough. This is slightly complicated by the fact that my anaemia has got a significantly worse, with my haemoglobin (Hb) having gone down to 8, which means that my blood doesn’t have the same oxygen-carrying ability that it ought to. It’s also making me feel very light-headed, very tired and generally unwell. However, because my Hb is now so low the docs have had to find some way of treating it, and because there are significant risks with blood transfusions they were reluctant to go in that direction, so they got pharmacy onto the case. One of the pharmacists – Matthew – spent a large part of last Friday investigating iron preparations, including phoning all manufacturers of iron preps. He checked, he double checked, he triple checked and eventually he succeeded in finding one that he was 99.9% sure wouldn’t send me into anaphylaxis and kill me. He brought them to the ward, and the doc gave me my first dose, though he asked for a lesson in using my epi-pen first, which was quite amusing in that he very nearly stabbed himself in the thumb with the pen, despite my giving what I thought were clear instructions. Mind you, he is a bit of chocolate teapot doctor – he’d come in a couple of days previously saying, ‘You know, I don’t think ferrous sulphate has sulphate in it,’ sulphates being one of the things I’m dangerously allergic to. Now I might be wrong, but I’m fairly certain that chemists don’t just pull random names out of a hat when they produce drugs, and I’m guessing that the name ‘ferrous sulphate’ is something of a clue that it contains sulphate. So anyway, after the epi-pen lesson and near-incident I took the first dose of the iron preparation that Matthew had found and I didn’t immediately die – hurray! However, there’s a four hour period of danger between consuming an allergen and it causing an anaphylactic reaction so it was a rather anxious wait for all of us, so I had my epi-pens and call-bell to hand, and each time a nurse went past my room they asked how I was. Thankfully all went smoothly, I’m still alive with no adverse reaction and I’ve had several doses since. This is a huge relief, not only the lack of reaction, but also that the anaemia can now hopefully be sorted and I’ll begin to feel better in that respect soon, although it can take several weeks, even a couple of months, to get the full benefit. At least I might stop passing out/nearly passing out before long, and that would definitely be a good thing.

You know the irony of my admission on 30th October is that this was the date I was supposed to have been doing my sponsored gym marathon to raise money for the Ward 29 – the ward I’m in. I had always put the proviso in that I would only do it on that date if I was able to breathe well enough, which obviously I wasn’t, but I had really hoped that I’d be able to do it when planned. I’m still going to do it, and I’m now planning it for 25th November. I know this isn’t far off and I have to regain strength and fitness in a fairly short period, but I am determined to do this. Nothing I can do, and no amount of money I raise, will ever be a big enough thank you for all the ward does for me and for keeping me alive against the odds. The advantage of having to postpone the gym marathon is that it gives more time to gather more sponsorship, so if you haven’t already and you’d like to please sponsor me/donate through my Just Giving page

Thursday, 29 October 2009

Broken

Everything's been a bit broken round here lately, which is partly why I haven't been around for ages, because amongst other things my internet connection decided to die. It's back now (obviously) and so am I ... except that I'm on the cusp of a hospital admission :o( In fact my consultant wanted me in today from clinic, but I couldn't because I was looking after my dad today, so as a temporary measure the Dr H put my prednisolone up to 150mg!!! I'll be going in tomorrow ... provided I don't splat completely in the night. W is on night-watch - bless her, she's wonderful - and will either take me up to the hospital tomorrow or follow me to A&E if I end up there through the night, which I'm hoping I won't. I don't think I will, but I've been wrong before, as we all know.

Actually, before I go up to the hospital tomorrow I have to go to a GP appointment because I've been breaking in ways other than my lungs and my blood results came back today. It's all a bit long to give a blow-by-blow account, but to say that I've been passing out/nearly passing out rather a lot and have had various other random symptoms. After a series of appointments and blood tests it turns out that my anaemia has got worse again and that my ferritin levels are low, although the receptionist didn't tell me how low. Anyway, I have to go for an 'urgent' appointment tomorrow morning, which means that there's a slight risk that the GP will be freaked out by my lack of ability in the breathing department and will want to send me to A&E before I get a chance to get up to Freeman. I'm hoping not, and the fact that my consultant is expecting me to call should help prevent the risk of despatch to the General Hospital where A&E is. Let's hope that the GP trusts me to get myself sorted with my lungs and that she can sort me out with regards the anaemia and low ferritin. The problem, as we discovered before, is that there doesn't seem to be any preparation of iron supplement available that doesn't contain something that I'm not allergic to (are there too many negatives in that sentence for it to make sense?), and the pharmacist suggested that the only solution might be to see if it's possible to have a preparation made up especially for me, but this would cost £70 - £100 a time and so would probably require PCT funding. I suspect that's a long and complicated process, but I can't keep on passing out and collapsing in a heap so something's going to have to be done.

So that's a quick update from a slightly broken person who had a broken internet, but who now has a mended internet and is hoping to get mended herself very soon.

I'll be back soon with more of an update, more info and hopefully more breath.

Sunday, 11 October 2009

Cathedrals and the bishops

Sorry for the long absence since my last post. It's been a combination of being busy, some days not feeling 100%, and working on some of the photos I've wanted to put up here. So the next installment of my holiday in Somerset ...

After W and I had been to Wookey Hole we took ourselves to Wells, which is only about 2 miles away. It's a lovely little city, with some very old buildings that look a bit drunken, propping each other up along the edge of the street, but just off the main street (at least the main street that we found) and square are two buildings that are far more stately in their presentation. The first is the Bishop's Palace, which has been home to the various bishops of Bath and Wells of the past 800 years.

This is the moated entrance to the grounds of the Bishop's Palace. You can just see some cygnets on the water, and I read in the palace that the swans on the moat/river learnt many, many years ago to ring a bell that's attached to the wall and be fed by the occupants of the palace. The swans have passed the skill down from generation to generation so that apparently they still ring the bell for food even today, though I have to say that we didn't witness this.

And this is the side view of the palace and one small section of it's lovely gardens. You can see it's proximity to the Cathedral by the Cathedral's tower peeking over the top, but I'll come to that in a mo. The gardens of the Bishop's Palace are lovely, and although it was wet we had an amble around and enjoyed the atmosphere. There were a number of sculptures in the gardens that were part of the Somerset Arts Festival, so we took our time looking at some of them, and there was one that I particularly liked of three swans in flight ...


It's not the clearest photo of them, but it gives an impression. There was something very pleasing about the simple lines and the gleaming metal that reflected the grace that these birds have.

Going back from the palace into the market square, and then almost doubling back on yourself through a little arch way in the corner you follow a path for a short distance and come face to face with this ...

The Cathedral. It's quite an awe-inspiring sight, and you need some time outside it just to take in it's size and splendor. However, as you'd expect in a building of such grandeur on the outside, there are some wonderful sights to take in on the inside too.

This is a detail of some lace work that's at least a few hundred years old, so far as I remember. It's in a small cabinet, in a darkened corner of the bottom end of the cathedral, but I stumbled upon it and thought it was beautiful and amazing. Think of the work that's gone into it, and how amazing it is that it's lasted all these hundreds of years.

The other Cathedral we went to was Bath Abbey. Bath is another beautiful city, though it has perhaps a bit more elegance and grandeur in it's whole demeanour than Wells. The Abbey isn't as awe-inspiring from the outside as Wells Cathedral is, but it's still very fine and far from small ...

And here are some photos of the interior ...



Monday, 28 September 2009

Over and under

My holiday to Somerset is over and I'm back home, but for last week this little cottage was my home.



It has to be said that W and I had a fantastic time away and did a heck of a lot. I had been hoping to blog during the course of the holiday to let you know what we were up to, but we were so busy that I didn't have time, so I'm going to do a series of retrospective posts, starting with our trips to Cheddar Gorge, Cheddar caves, and Wookey Hole. We didn't go to Cheddar and Wookey on the same day, but it seems appropriate to put them in the same post.

The first part of our trip to Cheddar was a bus tour up the road that ran through the middle of the gorge. We'd actually just driven down this road so had seen some of its splendour already, but as I'd been driving and having to negotiate some very tight blind corners it was good to be able to look around freely without risk of causing an accident. Here are a couple of photos of the gorge from the bus tour.


We then made our way to the caves, which are as spectacular as the gorge (even if some of the audio guide is a bit naff and touristy at times) with some amazing stalactites and stalagmites. This first photo from inside the caves is a view up the roof of the cave and it's a huge funnel-like hole that yawns at you from above.

And then you come across a cage of Cheddar cheese ripening in the cave! Although it's not strong, you can smell it as you approach the area.

This one is an amazing cathedral of stalactites dripping down off the wall and must have taken many, many thousands of years to form. Quite stunning.

And this is one of my favourite photos from inside the caves. I love the amazing structures of the stalactites and stalagmites, and also their perfect reflections in the water. I also like the subtle colours and it's wonderland/fantasy world feel.

More stalactites ...
There are two main sets of caves at Cheddar - Gough's Cave and Cox's Cave. I can't clearly remember which of the above photos are taken in which cave, but they are both spectacular ... until suddenly, in Cox's Cave, you are walking down a narrow set of rocky stairs, having seen some wonderful structures of nature, and you come across this ...

It has to be the most rapid change in mood of a place I've come across for a very long time. No longer are you wandering the caves in awe of God's creation and imagination; suddenly you're distracted by a whole Lord of the Rings theme going on. It's quite fun, but it comes upon you so unexpectedly and I burst into fits of laughter the moment I saw the disembodied head with the glowing tiara, initially forgetting that W couldn't see what I was seeing as she was behind me on the stairs. When it came into her line of sight she too burst into laughter, which in turn made the German blokes behind her begin to giggle. The rest of Cox's cave is taken over by the LOTR theme and here are just a few of the photos I took.


At the end of our exploration of the caves, and the weird LOTR experience, we decided that we really ought to try to see the gorge from above. This is no easy task for two brittle asthmatics, one with the added complication of anaemia (me), and the other (W) with the added complication of arthritis, but we're a stubborn and determined pair so we headed off up the steps that take you up the first part of the cliff and then headed on up from there ... slowly ... very slowly ... very, very slowly at times. It was worth it though ...

After our long (and possibly slightly foolish) hike along the gorge walk we had a much easier descent. It was still down a fairly rugged path, but it was downhill and that makes a lot of difference when it comes to breathing :o) We both managed to avoid any breathing crises during the walk though, which I think we deserve medals for :o)
We came out of the woods at the bottom of the gorge walk onto the road and had to amble our way along this to get back to the car near the tourist part of Cheddar - by the caves' entrances and gorge walk steps. It was a longer road walk than I'd anticipated, but it wasn't arduous, the temperature was pleasant enough (it'd been a beautiful, sunny day), and we came across some wild goats that we watched by the roadside for a while.

I really like this next photo of one of the goats ambling its way through the roadside trees. The sunlight just makes it for me.


And just after seeing the wild goats I saw something out of the corner of my eye do a little scurry on the ground to my right. I turned and saw this little chap.

We'd been told by the bus tour guide that there are water voles in the area so at first we thought that maybe this might be one of them (neither W or I are great at wildlife identification), but after a bit of internet research I rather think that this might be a much more common Long-tailed mouse/Wood mouse. Regardless of it's rarity we enjoyed it and it didn't seem to be particularly nervous of us either - it ran around us for ages, played with a leaf that was next to me and scurried over the toes of my walking boots. Eventually it nipped off towards the grass, but not for long and only after we'd been watching it and taking photos of it for a good ten minutes or so. I don't suppose any of you are able to confirm our identification of it as a Long-tailed mouse/Wood mouse, or suggest what else it might have been, are you?

That was about it for our excursion to Cheddar, so next is a little bit on our trip to Wookey Hole, which was actually the following day. Wookey Hole is touristy in a different way to Cheddar - more theme park-y. However, rather than an audio guide that is at times slightly irksome (as is the case at Cheddar), the tour of the caves at Wookey is guided by a person - a man. During the tour he tells the legend of the Wookey Hole Witch and how she is said to have been turned to stone by the incantations of a priest and his splashing her with holy water. The photo below is of the rock that is said to be the witch turned to stone.

The caves at Wookey are enormous and have incredibly deep rivers running through them. Some of the rivers look to be only a couple of feet deep, but this is an illusion given by the clarity and purity of the water and the lack of surface movement as there's no wind. In most places the rivers are actually several meters deep! You can't tell the depth of the river in the photo below, or see the illusion of its shallowness, but you can get some idea of the scale of the place by the rowing boat ... and this wasn't the biggest opening in the caves by any means.

Here is a much bigger cavern. This was taken whilst standing on a bridge that must only have been about a third of the way up the height of the cave. The place seemed to go on forever, and it was difficult to comprehend how deep into the land we must have been.



The caves were amazingly spectacular ... awe-inspiring ... magnificent. And then you step outside and come face to face with this ...


It's a bit of a shock to the system to go from the wonders of nature hidden deep in the Earth to an over-sized, plastic gorilla. Get into the spirit of it and it's okay, but it does feel quite random. However, W and I did get into the spirit of it and I took several more photos of what was to come, and it's very different from the beauty of the caves.
This guy might only be plastic (or something else, but definitely not real), but he's still a bit scary, don't you think? Kind of wonderful in his way ... perhaps ... maybe ...

And then you come across this fellow and his mates. They stare at you from around the gardens, lurking in the bushes, although they have a hard time hiding seeing as they're so big and some of them are painted quite gaudy colours. Still, they're fun and we were there to have fun so we got on with enjoying ourselves and got into the spirit of it.

So that was our jaunt to Cheddar and our trip to Wookey Hole. Both were great fun and we saw some amazing works of nature, which I've tried to give you a flavour of, but it's difficult to do so in such a limited space and only a few photos. For a true impression you really need to go there and experience it, but then I guess that's the case for most things in life.
I'll be back soon with another instalment of our Somerset Sojourn.

Sunday, 20 September 2009

We've arrived

W and I have arrived in Somerset after a fairly easy journey yesterday. It was long – about 7 hours all together – but it didn’t seem that long because of the company, although the traffic was pretty heavy most of the way.

The sat nav did a wonderful job of getting us here, except for the last little bit where it took us to the wrong house, but the woman there was friendly, helpful, and directed us to the manor house. Our cottage is attached to the manor house, which has a brook that serves as a moat. It’s very, very lovely here and ever so peaceful. When I woke up this morning I lay in bed for a while listening to the sound of nothing but a crow :o)

The cottage and the manor are both very old, with parts of the manor house dating back to Norman times! Obviously we don’t get to see inside the manor as it’s lived in, but we are right next door (actually, we’re attached to it), and the cottage is full of character – big, old beams, a slopey floor upstairs, a wood-burning stove in a huge, stone fireplace, walls that are 2-3 feet thick, and a twisty little staircase ... which I fell down last night and banged my back really hard. It winded me completely so for a moment I wasn’t able to breathe, and apparently I went completely white, but in the end I was fine; just sore. I feel a bit battered today, but nothing that’s going to spoil my time here.

So today is a lazy day. We’ve had a looooong lie in, and now we’re lounging in the living room. In fact W is still in her pjs even though it’s almost 1:30pm :o) We’re planning on going for a look around Frome sometime this afternoon and then go to one of the local churches this evening. W is a Baptist where as I’m Church of England. It doesn’t really matter as it’s the same God, but the worship is different so what we’re used to is different. We were talking about it last night and trying to decide what to do about going to church – we both wanted to go to a church today – and in the end I came up with a plan: we could go to the Baptist church this evening, but go to evensong at Wells cathedral when we head off there later in the week. Anyway, it’d be crazy to go to Wells cathedral and not go to evensong.

Well, W has gone off to get dressed so I’ll make steps to get ready for going out. It looks like a lovely day out there so we’d better make some use of it.

Catch you later.

Monday, 14 September 2009

Off again

Next Saturday I'm off on holiday again, this time for a week in Somerset with W. We've rented a cottage in Rodden, near Frome. It's attached to a moated manor house, looks lovely, and because it's out of season then it's just within our budget :o) I've been to Somerset before, but not this part of it, and I'm really looking forward to exploring the area. We have a whole host of things planned, and I'm not entirely sure how we're going to fit it all into a week, but I'm sure we will. Here's a quick run down of some of the places we're planning on going to, some of which are already booked:

Longleat. I wasn't originally planning on taking the car here, because of the risk of it being wrecked by the monkeys. Instead we were going to arrive by public transport so that we could take the safari bus, but it seems that the poor monkeys have some kind of infection that they're not supposed to be able to get as their an isolated community, so the monkey section is closed. I think it's less likely that a lion or giraffe is going to come and sit on the car and pull it apart.

Cheddar Gorge. Apparently I went here as a very young child, but I don't remember it at all and I've wanted to go for years. It's actually part of my reason for suggesting to W that we go to Somerset.

Wookey Hole. I'm not entirely sure what to expect at Wookey Hole. I think it's something like Cheddar Gorge, but a bit kind of theme parky. We'll see. There's some kind of myth about witches and they have people dressed up as witches. They recently employed someone as a new witch, who is allegedly being paid £50 000 a year!!!!!!

Wells Cathedral. I've heard wonderful things about Wells Cathedral and wanted to see its wonders for myself for quite sometime, so I'm looking forward to this. It might be a bit of way to drive there from Frome - I'm not very sure - but it doesn't matter.

Stourhead. This is a National Trust property that is said to have beautiful gardens. I guess whether or not we get there depends somewhat on the weather, but it'd be nice to go if we can, and it's one of the places that's suggested on the cottage website.

Bath and the Thermae Spa. I went to Bath in 2006 and loved it - it's beautiful and full of history. The Roman Baths are fantastic and the abbey is lovely. The thermae spa is right next to both of these and you can bath in the naturally hot spring water on the roof top with the abbey towering above you on one side, the stone-carved Roman soldiers at the Roman baths on another, and views of the rolling countryside of the Chew Valley on another. There's a lot to see and do in Bath if you want to, and during the time that we're in the region Bath also have the Children's Literature Festival running, which is just perfect timing for my new course so we'll probably take a look at that.

Stonehenge. This is another place I went to in 2006, but definitely worth a second visit. It was smaller than I'd expected, but had such an enigmatic atmosphere. It was fascinating and I'm looking forward to going again. I didn't explore any of the surrounding country and the other stone circles in the area so maybe W and I will while we're there ... if it's not too cold and wet (I'm desperately hoping for good weather while we're away).

It's going to be quite a packed week, and if we're going to get it all done then we'll have to do more than one thing some days. I hope we have some time to relax and enjoy the cottage too amongst all the activity and don't come back exhausted and in need of a holiday ;o) It should be great fun though and I'm really looking forward to it. We go on Saturday. It's quite a drive from here and I'm expecting it to take at least 6 hours, but I've put W onto my car insurance for the week so that we can share the driving if need be. Having said that, I do enjoy driving.

Right then, I'd better sign off for now and make my way to the gym for some more training for my gym marathon at the end of next month. The training's going pretty well, but I'm definitely having to pace myself so that I don't get too exhausted or push myself too far too quickly and end up in hospital. That would be counterproductive, wouldn't it?