Buddha Baby





This is a projection of how I may look by next year should I continue my current weight gain. I think its rather attractive. Well, it may be a little bit of an exaggeration, but I have now regained all the weight I lost over the summer (about 10 pounds in total) so if anyone wishes to now refer to me as 'Buddha Baby' it would not be entirely inappropriate. I think I have managed this due to a combination of consistently eating breakfast and making sure this is something appropriate like weetabix, instead of my usual choice of, for example; 2 chocolate digestives, one savoury mince pie, one slice of fruit loaf, one caramel log, or 2 chocolate truffles. I have not stopped eating the above selection of goodies, but have instead moved them to a more sensible 'supper' slot, which has been created by attempting to do my night time physio earlier in the evening. These small adjustments all appear to add up (to 10lbs in fact). I have no doubt that the period of time off work has also aided this weight gain, and this gain has in turn kept me infection free over the past 5 weeks and also pushed my lung function back up to what it was earlier in the year (as was measured at clinic last week). So I am delighted that my month long sabbatical was indeed worthwhile.

Speaking of work, I am now into my second week back. I didn't post about it last week, as I was a little disappointed with my first day back, which had left me feeling washed out and exhausted. However I suspect this the normal first day back feeling most people would experience, and I have found it to be easier this week. The 10 am start was definitely the way to go, as I now have enough time to complete all treatments and have the added bonus of missing the rush hour traffic. Winner.

Now my dilemma for this week is deciding whether I should go on a 2 week course of intravenous antibiotics prior to Christmas in an effort to ensure good health over the festive period. In some CF centres the use of 3 monthly IVs is advocated regardless of whether patients are symptomatic, but in my case, I never get to 3 months without needing them anyway. However, although I had some oral antibiotics about 5 weeks ago, I have now been off IVs for almost 3 months. Record breaking stuff. Logically you could therefore assume that I would be likely to require IVs before or during the Christmas period, and therefore logically it would be better to strike now and have them done and dusted by Christmas day. However,if you take into account the fact I feel quite well just now, it would then appear rather illogical to pump myself full of intravenous drugs that will predictably make me feel not so well due to side effects and add another hour or two off treatments onto my day. Also from past experience, I can become unwell within weeks, if not days, of a course finishing, so it does not even come with any guarantees. I will debate this over the coming week. The fact I both suggested it and agreed to it at clinic last week is irrelevant. I think I am entitled to change my mind. Fifty times a day it would seem.

Chicken Soup for the Soul

I spent this morning making chicken soup (with stock made from an actual chicken no less).. and it really is good for the soul. Not the chicken soup itself (although it was rather heart warming), but the ability to do something constructive and useful with my time, with the added bonus of creating simple lunch solutions I can freeze for those times when all I can find in the cupboard are savoury mince pies and chocolate digestives. The fact I knew how to make chicken soup is a direct result of mum' s frequent visits during which she attempts to mould me into a mini-me. Worryingly it would appear that she is succeeding.

On a serious note though, I have discovered, not surprisingly, that doing at least one constructive thing a day on the days when I'm not at work is indeed good for the soul, and more importantly, is necessary for a healthy mind. Everyone at some stage dreams of a days rest, tucked up on the sofa watching day time TV, but when this becomes your reality it can fast become your nightmare. There is nothing quite so depressing as wondering where your day has gone, then realising you have in fact dedicated it to Trisha, Phil and Fern...and are now recounting stories from your marathon viewing to anyone who cares to listen. As much as it is important to takes thing easy at times, it is also important to achieve the balance between activities that give you pleasure and those that give you a sense of achievement. In fact pleasurable activities become even more so, when you have also completed a more accomplished task (for example, sitting down to enjoy a cup of coffee and some trashy TV after completing the housework is so much more satisfying).

Unfortunately the problem is that with declining health it can become more difficult to complete any tasks, and indeed I have found that day to day achievement based ones generally seem to be more physical e.g cleaning, shopping, cooking, running errands. In this instance it is important that I recognise my limitations (hence my mum visiting so often and taking on my errand running, dog walking, cleaning lady post), but it is also important that I don't simply sit back adopt the sick role, throw my hands in the air and my towel in the ring. Quite frankly, I am still completely capable of throwing the towel in the washing machine instead. The other difficulty with CF in particular is the fluctuation in health and hence fluctuation in ability. I can go from being able to take the dog for 10-15 minute walks and managing a short stroll round the shops, to barely being able to tie my own shoelace. Literally. So what I have to be careful of is not always assuming I can't do something because I couldn't yesterday, but vice versa assuming I will be able to do it tomorrow because I could today. So in essence I need to push my self to achieve what I can do today, however small or large an accomplishment it might be, because unfortunately through this journey towards trasplant many of these simple tasks may become much harder, if not near impossible. I also need to retain as much of daily normality as possible to ensure an easier transition post transplant..can you imagine having given up all the most boring accomplished based tasks pre-transplant only to discover you no longer have an excuse to avoid them afterwards? I can't imagine I would be shouting "Oh yay, I now have two new lungs, where is the iron?!" Its not a head transplant I'm having.

Playing to the Gallery



Since last posting I have learnt two important, yet costly, facts:

1. The list of official veterinary diagnoses include rare conditions such as "Wimpy dog" and "Playing to the gallery"
2. "Wimpy dogs" who enjoy "playing to the gallery" generally result in large and unnecessary veterinary bills.

I shall explain further..

It started off as an average Wednesday. After running some errands I was relaxing on the sofa, and Seb was amusing himself in the garden. He normally scratches the back door when he wants back in, and after an unusually long period of silence I went to check he had not escaped from the garden (again). In fact he had not escaped but was instead sitting on the doorstep holding one bloodied paw out at a funny angle, and looking very sorry for himself. He hopped into the house on three legs and just stood there looking bewildered. I scooped him up and laid him on the couch so I could inspect the paw. Realising something unusual was happening (he is not normally allowed to lie on the couch), Seb lay back with all legs in the air, looking quite pathetic and folorn. On closer inspection I could see he had caught a nail in something and it was bent inwards, digging into the pad of his foot and bleeding. I managed to get an appointment at the vets for later that day, and in the meantime Seb lay in his basket holding the foot up in the air and looking perplexed. If I left the room, he would slowly lift his head up with great effort, as if the sore foot was now also affecting the muscles in his neck. You know the way someone who has the cold shuffles about in a pathetic fashion, just to remind you they are ill.

On seeing the vet, he was at first worried that Seb had broken his leg because he wouldn't weight bear at all. On examination however, it appeared to just be the loose nail, which the vet pulled off with one swift move. Despite the removal of the offending nail and a painkiller injection, Seb still refused to put the paw down and stood there defiantly holding it out at 90 degrees. The vet appeared amused, and said "I think there is an element of playing to the gallery here..he should be able to put the foot down now". I was instructed to keep the foot dry and clean with salt water, and if he still refused to walk on it by the next day to come back.

Next morning and Seb was still hopping around like a strange lopsided bunny, holding the foot out in a dramatic fashion just in case we had forgotten he was an invalid. So it was back to the vets for further inspection. There was nothing obvious to be seen, but since he still refused to put the foot down at all, an x-ray under sedation was now deemed necessary and I had to leave him at the vets for the day. The fact that when the vet was examining his foot, Seb was also licking her face at the same time, made me a little suspicious of how sore the foot really was.

I returned to collect Seb at the end of the day, to find him hopping merrily about the veterinary practice with his little bandaged paw looking quite pleased with himself. The vet explained that she had looked carefully at the x-ray and could find nothing wrong. She then hesitated before announcing "I think its really a case of a wimpy dog". The official diagnosis. Wimpy Dog.

It cost me a grand total of... *drumroll* ... £160 to discover that Seb had a broken nail, is a total wimp and enjoys a bit of amateur dramatics. Well, you know the old fable "the boy that cried wolf"...I'm going to read that story to Seb tonight and he better take heed.

I tried to take this video on my mobile last night to demonstrate the little hop-a-long dog. Due to the poor quality, I took the second video using my camera barely 10 minutes later. In that time, Seb had decided after 2 days of no weight bearing and £160 vets bill, that he could in fact walk on the foot after all and no, he would now not be performing for the amusement of my blog readers. Born actor I tell you.

Returning to work and driving hazards

Well this is my last week signed off before I go back to work and I am already feeling anxious about returning. I thought all this lounging about the house would give me far too much time to dwell on how I was feeling and make me overly focused on CF, with my daily routine involving an analysis of symptoms and what they might mean. Interestingly quite the opposite has occurred. Not having the pressure of going to work has made me much less focused on how I feel on a day to day basis, and much more able to just take things as they come. When I'm working, I am much more stressed when I have an 'off' day because I then have to decide whether I am just tired, a bit run down, have an infection brewing, or am just having 'one of those days' that the rest of the non CF population are also susceptible to. I then have mini battles in my mind over going to work, not going to work, seeing how I feel in the morning, seeing how I feel when I get to work, phoning the hospital, not phoning the hospital. These internal conversations with myself can go on for some time, and tend to eat into more useful activities, like watching TV and relaxing, or more importantly, sleeping. The most likely conclusion to these events is that I phone mum and ask her, because clearly she has the answer to everything.

Anyway, despite my anxieties I am looking forward to going back to work. I do really enjoy it when I am well, but unfortunately even my little 4 hour shifts can feel like an eternity when I don't feel so well. However I have now had my hours changed to start at 10am, which should be much easier, and I have also have vowed to actually stay off work when I am unwell regardless of whether this happens the same week I go back. Now I hope someone will remind me off this the next time I ignore my own advice.

For some comedy value I thought I might mention the incident at the traffic lights the other day. Andrew had been driving my car, and being a good foot taller than me, he has to adjust the seat fairly drastically. So I got into car and put the seat back up, pulled it forward and put the steering wheel back into position. I didn't get off to a good start, as I was wearing my big boots, which although sensible and flat have grips in the shape of a large rubber foot print (you have to see it to know what I mean, but rest assured they are not the best footwear for driving). I more or less shot out the driveway at high speed, in a jolty fashion... you know the way when you can't feel either the clutch or the accelerator through your shoes, so just have to hazard a guess at clutch control. By the end of the road, I was getting the feel for things, but now felt a little to close to the steering wheel so decided at the next set of traffic lights I would move my seat back. I got to the next set of lights and went to move the seat back a notch. I didn't move back a notch...I FLEW back at high speed as far as the seat would allow. Obviously being a midget, I could not longer reach the pedals, so my feet shot off both the accelerator and clutch, causing the car to simultaneously stall and roll forward at the same time. I managed to grab the handbrake and at least stop the car moving, but was practically sitting in the back seat, and pinned in this position by the seatbelt. It was to be expected that the lights would now change to green. Fortunately the cars behind did not toot at me...I am not sure if they perhaps saw my started and slightly horrified expression in the mirror, or whether they thought I had just gone crazy and felt it safer to just leave me well alone. I did eventually manage to haul myself forwards by holding onto the steering wheel with one hand, and operating the seat lever with the other. Then feeling slightly startled and still wearing my big boots, I shot of round the corner with an excessive revving of the engine. Moral of this story is: never wear big boots with comedy grips when driving, and small people should never adjust position of a car seat unless parked in driveway or similar.

So I think I've now received the last of my internet purchases. Thank God. I was able to luxuriate in bed this morning without the fear and trepidation of the door bell ringing at some unearthly hour. Throughout my little internet spree, the post man managed to arrive twice when I was half undressed, three times when I was tucked up in bed sound asleep and another occasion during a stand off with Seb, where he was sitting up on the couch and I was frantically shouting "'Off!" while waving arms. At least the postman was useful on this occasion, as for Seb, the door bell is a signal to run at high speed and pogo up and down at the front door. It is a frosted glass door and he therefore makes a complete spectacle of himself. Nothing new there then.

I had my meeting with work to discuss reducing hours, so my contract has now been changed to three half days a week, instead of four. I have the option to reduce this further to two half days if necessary in the future. I think having the extra day off during the week will be helpful for catching up with rest (and highly important activities such as hair appointments and meeting friends for coffee). I am also having a further meeting with my current boss, to see if I can adjust my starting time a little. I currently work 9am until 1pm, but I think a later start (maybe 10ish) would make a huge difference. This would give me more time to do my physio and nebulisers, without having to get up in the middle of the night to do so. I do at least feel a little more in control of things, and maybe all these small tweaks to working life will make all the difference. At least the difference between being able to work at the moment, or not. A somewhat important difference.

On a completely random note, I have decided I am very prone to what I think is referred to as 'false economy'. Two examples from past week alone:

1. I find out where the nearest Aldi's is, because mum tells me they have wrapping paper at 99p for 10 metres. Bargain. I find nearest Aldi's (20min drive) and buy the 99p paper. I also buy £28 worth of other "stuff". I cannot fully account for this stuff, and I'm not entirely sure why it cost £28. But at least the paper was only 99p.

2. I go to "pound shop" to buy pack of chew bones for Seb at cost of £1. I manage to spend £9. Again I cannot account for this £9, other than knowing I must have purchased nine items. I only needed one item.

Moral of story: in future only keep £1 in my purse and no switch card.

For some light entertainment I will leave you with another clip of the marvellous performing Seb. This is his 'play dead' trick in response to the fingers pointing at him like a gun while saying Bang! I am so easily amused.

I have been constructive this week and have finished the canvas for mum. As the canvas was fairly big (almost 1 metre wide), I had to mostly stand to paint. I like to sit when painting..it tends to tame me a little, and means more paint on the canvas and less on the wall, floor, my clothes and Seb. Fully realising the dangers of standing when painting, I was suitably attired and had donned my little blue lab coat. I have no idea where this originally came from; I only know my dad gave me it years ago so its original use was probably related to lying under cars or something of that ilk. It goes down past my knees (best to cover as much clothing as possible) and I look pretty ridiculous. I was absolutely convinced the post man was going to come (or the window cleaner) whilst I was dressed in this highly fashionable wee number. The post man did not come...the post man thought it more amusing to wait until 7.40am this morning when I was all tucked up in bed, sound asleep. He is such a thoughtful man.

I have added a photo of the canvas. The little people look a bit like my mum and dad (although apparently dad said "who are they meant to be?" Clearly this has nothing to do with my artistic skills and everything to do with the fact he has no idea what the back of his head looks like).