I saw my GP last week and he signed me off work for a month to see if I could get on top of things health wise. I must admit to be feeling a lot better, and also more energetic. Its hard to say whether this is due to just finishing my antibiotics or due to not being at work. I suspect its a combination of the two. So far I am not feeling bored or fed up, but I think this is because I plan to get back to work in a few weeks so it just feels like I'm on holiday just now. I do have a meeting with work this week to discuss reducing my hours, so in my own way I'm trying to be sensible. I know in the long term, working might not be helpful, but at the moment its best just to humour me. Everyone else does.

So what have I been doing with all this free time? I have been internet shopping. Oh yes. Christmas has started early in this house and there is no stopping me now. I have many excuses for this ridiculous behaviour, including the fear of becoming unwell mid-December with no shopping done (been there, done that) and also the fact I'm hopefully going to be at home when the parcels arrive. Last year I was no stranger to finding those little 'sorry we missed' you cards sporting a miniature map directing me to a collection depot 10 miles from my house, in some dodgy industrial estate (the kind where drug deals take place after dark), only to collect an item I probably could have bought in the corner shop. This year, I plan to receive all internet purchases before I return to work.

This great plan is already looking flawed. Why is it that when the post man is bringing junk mail and bills, he arrives around midday when I am sitting on the sofa, washed, dressed and looking serene; but when he is bringing parcels he arrives early in the morning when I am either in bed, on the toilet, or in a state of undress. I therefore arrive at the door with my hair at right angles to my scalp, my dressing gown on backwards over the infamous mismatched pyjamas whilst waving frantically at Seb shouting loudly "get back, get back! It's not for you". The postman's timing is uncanny, and I feel it goes beyond coincidence. Either he is in cahoots with the window cleaner, or they are in fact, one in the same.

In an effort to distract me from my internet shopping spree, and I suspect to try and save my sanity, mum has asked me to paint her a picture for her bedroom. Funnily enough this involved more shopping, as Andrew had to drive me into town to collect some supplies. Namely a canvas I could hardly carry and a bag full of paints. I have no idea what I am actually going to paint yet, and I do have a bad habit of just getting stuck in with no prior planning so its anybody's guess really. My main objective is simply to keep Seb's paws out of the paint, as on a previous occasion he stuck his two front paws in some bright orange paint. Had I been thinking clearly, I would have let him walk over a canvas, called it art, and sold it on ebay for a small fortune. You live and learn.

Today Seb helped me tidy the house. You may consider this a form of animal cruelty, but to be fair most of the toys on the floor were his.

My chest was still playing up after a week on the antibiotics, so being my usual patient self, I made an appointment at clinic to review the situation thinking I may need to start some IV antibiotics. Fortunately my tiny lung function was remaining stable and my oxygen levels were better. I explained that despite this encouraging news, I was still coughing excessively, felt out of breath and generally 'didn't feel too well'. She sat pensively for a few moments, contemplating the situation, then with an almost wistful look turned and said "you know Jacqueline, that at this stage, 'generally not feeling too well' is to be expected and something you need to accept". I was slightly taken aback, but recovered long enough to throw back my plea of "..but I don't feel well enough to go to work". Clearly in my head this is the medical yard stick by which the severity of infections are measured. She looked at me, one eyebrow raised in a quizzical fashion and said nothing. I could feel my face flush with embarrassment as I thought about the conversation we had just a week previously regarding work and its effect on health. Sheepishly I conceded that 'not feeling able to go to work' perhaps called for a lifestyle adjustment and not necessarily more drugs. After mulling this concept over and trying to look at the situation objectively, and not emotionally, I have decided to take some extended time off work..perhaps a month or two..and see what effect that has on my general well being. In that time I plan to mainly focus on two things; exercise and eating. I will also make enquiries into reducing my hours at work, so that my plans to go back are not completely unrealistic. At the moment I just need some time; time to contemplate and time to accept.

I mentioned the plan to increase my exercise and I am seeing the physiotherapist weekly to work on this. At my last visit she suggested we could join the cardiac rehab class, which is essentially a gentle exercise class mainly for patients recovering from heart attacks. You can therefore imagine that the average age of participant is well over 60, and some looking more like 80. So there we all are, about 30 oldies and me, littered round the gym hall all watching the physiotherapist intently and attempting to copy her moves. It started ok..stepping sideways, forwards, backwards and marching on the spot, all in time to some cheesy 60's classics blaring from the tape deck. Then we had to add in the arms. Now I always thought I was reasonably coordinated, having taken some dance classes as a child, but I discovered that, I am in fact, not. My feet and arms appeared to be incapable of moving in unison, and should the move involve the feet and the arms going in different directions it was fairly disastrous. Being very mature, I stared to giggle and behave in an inappropriate manner, exaggerating all the moves and making faces at my physiotherapist. Realising I may be disrupting the class and showing up my physio, I tried to control myself and stifle the sniggers. That was until I stopped to catch my breath and standing at the side of the class, scanned the room. Rod Stewart was blasting out 'Pretty Woman' and everyone was attempting a sort of knees bending and punching arms out in front at the same time maneouvre. One particular man, who looked in his late 70s, was going great guns; knees bending in time to the music, stooped over with his head down and enthusiastically punching the air with vigor. I think he was so caught in the moment he even had his eyes shut and may in fact have thought he was Rod Stewart. Looking round the room, it really was reminiscent of bad Christmas party where everyone has had a bit too much to drink. It all proved too much. I had an uncontrollable fit of the giggles and had to move to the seated area and compose myself. I was in fact unable to rejoin the class. Surprisingly I think the physio wants me to try the class out again, so in future, I best learn how to behave in public.

Lastly I better update you on Sebs little eyes. He was pleased to find it was the vet with the cookie jar and I was pleased to find his eyes looked much better and I could stop the drops. The vet has suggested I try to get Seb used to having his eyes examined, by rewarding him for letting me poke and prod at his face (well thats not exactly how the vet phrased it). This should be achievable, as Seb loves to perform in return for rewards. Sometimes when he is perfoming tricks, I think he is the smartest dog I know and then sometimes he clearly reminds me of his limitations. For example, in the morning he loves to come upstairs and burrow under the duvet, where he mashes himself against my legs and goes to sleep. The other morning it was hot and I was lying with my legs on top of the duvet. He came bounding onto the bed where he then stopped abruptly and stared at my legs. He sniffed at them, he pawed at them and had a good look round before deciding his best bet was to try and mash himself against them anyway. He lay there for a few seconds before deciding that this wasn't quite right. He tried all sorts.. draping a paw over my leg, draping two paws over, and resting his head on my leg before finally trying to clamber on top of them. Still thoroughly confused he rolled off and began alternating between frantically pawing my leg and the duvet, as if this action would somehow get my legs to go under the duvet. By this stage, I was feeling a bit sorry for him, so put both legs back under the duvet and pulled it back so he could climb under. He just stood in the middle of the bed looking completely bewildered and staring at where the legs had been, before throwing me a look that seemed to say " I dont know what you're playing at but its not funny". He then ran off to find Andrew. That dog has no sense of humour.

I may have been a little too smug a little too soon. I was back up at the hospital today getting myself kitted out with some oral antibiotics, as my chest decided it didn't want to play ball anymore. In fact it doesn't want to play any kind of sport, whether it involved balls or not. To be fair I don't feel too bad really, just more chesty and generally tired out. I've also been having recurrent headaches of late, so I am going to get my overnight oxygen levels checked when I finish these antibiotics. However I'm more inclined to believe these are tension headaches, and suspect its directly related to the fact I'm finding work a struggle at the moment and consequently worrying myself silly about the prospect of not coping.

It's interesting that I have been pondering about work; its pros, its cons and its role in my life, because my doctor brought up this very topic today. She was observing that in the last few months my health has not been at its most stable, and indeed, has probably taken a slight downward trend. She wonders why this is. She wonders whether work interferes with my ability to tackle my CF head on. She wonders whether I have my priorities in exactly the right place. She wonders whether I should be working at all. She wonders why giving up work would, to me, seem like my world had ended.

So why do I keep working(and intend to for the foreseeable future)? In part it probably stems from some fairly dysfunctional core beliefs I have about myself. About the fact I define myself largely by my achievements and my ability to achieve. I strived hard to succeed at school, so I could secure a place at university. I strived hard at university to secure myself a successful career. And now I strive at my career...to secure what? My future. My happiness. My sense of self worth. Deep down I know that the only sure thing work will bring me is money. And we all know what money can't buy you. I know my future is my own to mould and to sculpt and to discover as it unfolds. Its something that will come around regardless of where I work, what I work as, or whether I work at all. My happiness is something that lies within myself and can probably only flourish when I stop worrying about my future. My sense of self worth is, I suspect, even more complex but if I'm looking for affirmation that I'm someone worth knowing, then surely I need only look to my family and friends and the question is answered. However, putting this frightening glimpse into the psyche of Jac aside, I do have some far more sensible and practical reasons for continuing to work. Quite simply, it gives me a reason to get up in the morning. It gives me a structure to my life and shifts my focus from health to something far less tedious and it means I am not 'just waiting' on my transplant. I enjoy my work, and I love meeting people and hopefully making a difference to someone. I am not yet ready to give that up and in fact I intend to hold onto it fairly tightly, possibly until its prised from my gnarled little fingers. I will however slacken my grip on the reigns a little, and I am planning to reduce my working hours. It seems like a fair compromise to me.

On a lighter note, I will leave you with the latest installment of Sebs eye fiasco. The return visit to the vet, did as suspected skin me another few quid, but unfortunately did not result in an 'all clear' verdict. In fact it was even worse than not all clear; it was 'still looks red AND has now spread to the other eye'. Seb was not impressed by the vets rough handling and prying open of his eyelids. Especially since this was not followed up by a small dog biscuit from the cookie jar (his usual vet has a cookie jar). In fact to illustrate just how unimpressed he was with the whole situation, on leaving the treatment room he casually sauntered past reception only pausing momentarily to lift his leg and pee up the desk. As you can see, I have brought him up well. Anyway, we ended up leaving the vets with different eyedrops, to be applied..wait for it..four times a day. Four times?? I was barely managing once daily drops. Six days later and I can safely say that Seb is pretty much traumatised by the whole scenario. A scenario that involves him being wrapped tightly in towel, with only his face showing, to prevent him batting the eyedrop bottle with his paws (which he had discovered to be very effective stalling tactic). We are due back at the vet tomorrow and I am hoping and praying for a positive outcome. Seb is simply hoping and praying its the vet with the cookie jar.

The CF nurse just phoned to remind me I'm due to have my port flushed on Friday. This is fantastic news. It means I have been off antibiotics for nearly 4 weeks! Over the past few months I have barely been getting past 2 weeks before needing at least oral antibiotics, so I'm feeling strangely smug. I am also wearing a strangely smug expression. Its verging on scary though, so I am now reverting to a more comfortable and relaxed expression. Worryingly this is slightly scowl like. I have bad habit of frowning inadvertently and therefore looking like I strongly disapprove of what's being said, when its more likely I am in fact not even listening ;-)

The nurse also asked how I was getting on with the NG feeds, and had I made any decisions about removing the peg tube yet. The short answer to the last question is "no". I just can't decide what to do. I feel very much trapped in a no win situation at the moment. I have managed fairly well with the NG feeding, however I remain extremely anxious about the prospect of removing the peg tube. Its like my safety net. I can manage to get the NG tube down at the moment, when I'm well...but what if I was feeling sick? (which is often); what if I have a cold with runny nose and tickly throat?; what if I need oxygen and therefore have tubes jostling for position on my face; what if I need to do extra bolus feeds during the day?; what if I have a sinus infection (which again, is often)? Even writing that list is making me hold one hand over my peg tube in case a passing mad man steals it. Yet on the flipside, the damn thing is still sore. Its reached a new plateau of pain; not quite as sore as before, but still sore enough to make me swear (under my breath of course, and only posh swear words like "drat") at least once a day. On balance though, Seb makes me swear (and pray at the same time), more than once a day and I'm not having him removed. Yet.

Speaking of the fluffy creature himself, I will now update on the eye drop fiasco. I have now discarded all attempts at both the 'softly softly' and the 'stealth' approach. Sadly I had to also abandon the giant dog treat outfit. The hire shop only had a 'bonio bone' outfit. Seb doesn't like bonio bones. I think they are too dry and tasteless. And they are clearly not cheese (which he would kiss a cat on the lips for). Anyway, I have now progressed to hard line tactics. Namely getting him into a headlock while Andrew administers the drops. To be fair I am taking the most dangerous position, especially since he is so wriggly that I had to mash his head against my head for extra leverage. Quite obviously I was taking the risk of having my nose bitten off, but instead I found my eyeball being nearly licked out of its socket. Thankfully while Seb was engaged in this endearing, yet 'wrong on many levels' activity, Andrew got a couple of drops on target. I am due back at the vet tomorrow for a follow up, so we are all hoping for the all clear and no more drops outcome. An all clear that costs another £30 no doubt.

Seb, it's time for your eye drops. Where are you?

I survived the first week back at work and despite being absolutely exhausted, I have at least made a start and will just take it a day at a time. Unfortunately I have been coughing a lot more this week. Since I am otherwise feeling ok, I have, by a process of deduction, concluded that I am in fact allergic to either early morning starts, or work, or a combination of the two. I have yet to decide on a treatment plan. Avoidance seems appealing, but perhaps not practical (largely from an earning money stand point). Desensitizing would involve going into work late and then over a period of time starting a little earlier every day. Again, appealing but verging on grounds for dismissal. So I guess I will have to adopt the "complete exposure therapy". In simple terms this means stop whinging and get the hell on with it. This is my new motto. I think it has a certain ring to it.

Healthwise, I'm still having problems with my peg tube. I got so disheartened and frustrated by it this week, that in a little hissy fit I may have phoned the CF team and demanded its removal. This was met with a slightly flustered response, a degree of umming and ahhing, followed by an urgent appointment with the doctor to "discuss". Discussion ensued, and I put my case forward that pain from peg site was limiting both physical activity and eating. Both of which are fairly crucial to my well being. Obviously I cannot simply stop my overnight feeds, so would need to resort to nasogastric feeding (shoving tube down nose on nightly basis). From the doctors perspective he was concerned, firstly, that removal of tube would not eliminate the pain, as the cause is not entirely clear. Secondly that the original peg was so difficult to insert that having another one should NG feeds fail would not be a simple procedure, and lastly, that transplant team would, in light of current poor weight, conclude that he had in fact lost his marbles. We came to the mutual conclusion that I should NG feed for 10 days and then review whether I still wanted peg tube removed.

I have therefore NG fed for past 3 nights, and it has been ok (well as ok as shoving tube down nose can be). However I do have some niggling concerns about this route. The main one is chronic sinus problems making NG tube painful, my motivation to use NG tube if feeling very unwell and also the fact I cannot disconnect it easily. I had therefore found myself having to carry the entire feeding pump and litre bottle of feed with me to the bathroom at 3am (in the dark). Clearly if I just happened to be consuming any whisky liquers prior to bedtime, this could prove dangerous, and at worst fatal.

Strangely the peg tube hasn't been as sore since I commenced the NG feeds. This could be one of three reasons: 1. Total co-incidence 2. Not using peg is allowing it to settle 3. Peg tube over heard discussion about imminent removal and is now pretending to behave in order to avoid expulsion. (Sometimes at night I think I can hear a small but definite "mwah haw haw") So in summary, I will NG feed for 10 days and then review. If peg improves I shall keep it for time being but it will be strictly placed on a good behaviour order.

My other news involves Seb and his hardships. This week I had to take him to the vet with a sticky eye. I really did not want to be charged £30 for a 3 minute consultation to be informed he had conjunctivitis, so had been bathing his eye with saline for a few days and hoping he has just poked it with a twig or something, and it would spontaneously improve. After 5 days, I thought I was perhaps being neglectful and suddenly panicked at the thought of Seb going blind (queue sad music and camera shot panning in to small dog with one eye and single tear drop). Spurred on by by melodramatic thought process, I hastily made an appointment with the vet for that afternoon. After checking in at reception I sat down in the waiting area, and Seb jumped up and sat in the chair next to me. We sat like this, side by side, for a few moments before I noticed the receptionist looking at us with a somewhat bewildered, yet amused expression. I slowly realised that it was perhaps not normal for the animal to also sit on a chair while waiting to be seen. However at £30 a pop, I figured Seb was entitled to lie down across 3 chairs should he feel like it. After all he is the patient. The outcome was that I left after 5 mins with bottle of eye drops and a dog with one eye dyed bright orange.

I have since been experimenting with ways of getting these drops into the dogs eye (i.e not on his head, eyelashes, nose or living room rug). My first approach was stealth like, and while he lay asleep I swooped down opened one of his eyes and fired in the drops. Needless to say he did not stay asleep for long and has now taken to sleeping with one eye open. Just to be sure. The next approach involved me holding a treat in front of him as distraction, while Andrew came in from the side and unexpectedly squirted some drops in his eye. I tried this one by myself earlier but he has cottoned on, and managed to somehow watch the treat with one eye, whilst never losing sight of the eyedrops with the other. I am currently still planning my third ambush. It may involved me dressing up as a giant dog treat, but I have yet to determine the final details.