Quick Update

It would appear that I am not in Daily Mail today. I have yet again misled everyone into buying a copy. I can assure you that I do not have shares in the paper. I think, however, they should be paying me commission. I have emailed journalist to ask if she knows when it will be (unless of course they have ditched me altogether). I don't think I will mention it again, as I'm annoying even myself now.

Off to pack for London now..

Adapting

I am thankfully starting to feel better now, so will hopefully avoid the threatened hospital admission and be able to take my trip to London next week as planned. However, unfortunately, I am still feeling very breathless on any exertion which has been limiting my activities to those which generally involve little or no movement. That would be lying in bed, sitting all day on the sofa and walking between the two. Funnily enough, it becomes a little 'samey' after a while. I decided today I would try and take Seb out for a short walk and get myself back into some sort of exercise routine. I made it to the end of the road and back at what can only be described as a snails pace. Seb normally 'trots' when he is out for a walk, but today I was moving so slowly he had to do this weird skulking motion, not unlike a prowling cat. He looked really odd - I was secretly pleased though, as I hoped it would distract any passers by from the fact I was shuffling along like an old lady.

Although I can laugh, I also feel frightened by this new lack of mobility. I feel as if my world is slowly closing in on me, that gradually more of the things I love to do are being snatched from my reach and I am left with a feeling of increasing isolation. Today I just wanted to take Seb a long walk, to enjoy the fresh air and to feel I had accomplished something. Instead it was more like a hobble along the street, then 5 minutes sitting in the hallway recovering enough energy to remove my coat and the dogs lead, before taking up my trusty place on the sofa once more. A bit of an anticlimax all round. I am hoping things will improve over the next week with the oral antibiotics, and maybe its just taking longer to recover because this infection has lingered on. I know that I will find ways around these ever evolving issues. I will adapt, learn and develop new ways of coping; all I can do in the the face of such a fluid and changing situation. I just wish the goal posts would stay still for a little longer, that's all.

As a coping strategy to being stuck in the house this week, I have been trying to take photos of the birds in my garden. There have been lots of fledglings in the past week, so I've borrowed dads super dooper zoomy camera to try and capture some of the fluffy wee things (as illustrated in my photo of the week). I ventured outside with the camera earlier to try and take some shots from the top of the garden. As I slowly skulked up the garden path, in my stealth bird watcher like way, I became aware of someone or something following me. Yes, it was Seb. He feels the need to investigate everything and proved to be a great hindrance to my bird photography plans - wandering into shot, chasing off potential customers and leaving doggy nose prints on the camera lens. Needless to say most of the shots ended up with Seb as the main subject. No surprise there then.

Since we don't give Seb any toys, he has to resort to playing with small twigs:




If I don't update during the week its because I'm off to London on Wednesday for the awards ceremony, and more importantly, the Mary Poppins show. The awards show will be shown on Saturday 2nd June on Five Life at 7.30pm. The Daily Mail article should be in this Tuesdays health section. If its not, then I suspect the interview I gave was either:
a) to a bogus journalist
b) to an entirely different newspaper
c) a complete figment of my imagination

I wouldn't be surprised if it was C. I did momentarily think the fan at my bedside was a giant face last night - the lights were off and I was half asleep, but I'm not sure that entirely explains it. Best not to tell people these things eh? Oops too late.

The Monday Blues

Well, I said I would give it until Monday and then decide what to do about my 'not feeling so good' scenario. Things didn't really improve and after developing a temperature last night, I decided it would be sensible to get checked over today. The doctor confirmed that the infection appeared to be grumbling on and we agreed on an initial trial of some oral antibiotics, which have worked well for me in the past. He wanted to avoid IV's just now, since its only 1 week since the last course, but if I'm not improving by the end of this week I will need to go into hospital to start some different IV's and get a general overhaul to make sure we are on top of things. I have started to lose weight again, and really cannot afford to go down that road, so its back to the nesquick and carrot cake diet for the foreseeable future. I can, however, think of worse diets to go on.

The lingering chest infection means I am now off work again, having only been back for one week. I think I have probably been off work more than I've been at work this year, which is a little depressing. I am trying to be more sensible about taking time off when I'm not well, so I guess I will just have to accept the situation and realise that I cannot control these things, no matter how much I would like to. My work, as always, are being very supportive. The secretary did however suggest that I might just be taking time off due to the embarrassment of the impending Daily Mail article, which is sure to be passed round at the Tuesday team meeting. I told her is is likely to be a tear jerker, and she should count how many boxes of tissues are used and let me know. The article will either be in tomorrows paper or next Tuesdays, to coincide with the awards. I don't think you will miss it - there will probably be a huge photo of me, possibly on a nebuliser, and possibly staring forlornly out the window. I am rather hoping they have used the photo of Seb licking my nose instead, if only for comedic value.

For anyone interested (not sure who would be) my bathroom is progressing nicely. The stud finder and pipe cutter were used appropriately under professional Father-in-Law supervision, and there is now a shiny towel radiator on the wall and a laminate flooring underway. My dad was very helpful over the weekend. He was especially helpful at taking Andrew to Homebase and B+Q on "emergency visits for emergency supplies" which consisted of various power tools and accessories to add to Andrews collection. They would both come back with a pre-planned story about why this tool was essential, what else it could be used for in future, and how great a deal they got on it. I think dad deliberately left half his tools at home as part of a master plan in acquiring new tools for Andrew. I suspect its a bit like woman and shoes. Dad if you are reading this - I am on to you.

Lastly, you might notice that I have added a Guest book. It has the option of leaving private messages if you don't want everyone else reading your comments, or just leaving a general message. I don't think its really necessary but I saw it on someone else's blog (sorry Em!) and I wanted one too.

STOP right now!

My clinic appointment on Tuesday was a mixed bag really. The good news was that my chest sounded a bit better and my weight was reasonable, the bad news was that my lung function was exactly the same as it was pre-IVs and I still don't feel on top form. However the doctor told me "you have to accept that sometimes the IVs just don't work as well as they do at other times". Oh, ok then. I now feel much better.

I completely understand the need to avoid frequent courses of antibiotics, and indeed, I don't even want to go back on any just now. I just want to feel better, to have enough energy to get through some simple daily tasks without feeling I need to lie down and to maybe wake up one morning and actually feel ready to face the day. I don't really accept that the way I have felt the past couple of days is the way I am going to feel from now on...after all, I was feeling pretty good only a few weeks ago, and really enjoyed my few days in York. Maybe this is just a getting back to work tiredness, maybe its this miserable weather or maybe the infection is lingering on. I don't really know, but I am giving it until Monday and then....well I don't know what happens then. I will have to wait until Monday.

On a more upbeat note, an odd thing happened this morning. I tried to prevent a traffic collision my holding my hand up in the STOP position, like a police man directing traffic would do, except I was in my car at the time. I was driving along the road, and due to parked cars and some road works, there is only room for one car (mine). I reach the end of the road and another car is turning in, but they do not see me because they are too busy smiling and waving to someone standing at the roadside. I detect a potentially dangerous situation and I do the most logical thing. I adopt my stern 'official' face and hold my hand up in an authoritative STOP signal, and hold it there. (I suspect this may be along the same logic that sees me breathing in very deeply to make myself smaller when parking in a tight space). Goodness knows why I did not toot the horn, although to be honest I'm not even sure I know where my horn is. Fortunately the woman turned round at the last moment and saw my car, and unfortunately also saw me sitting in it signalling her to stop with my hand. I tried to nonchalantly turn it into a waving motion - a kind of friendly 'hello there little lady'. I think it may have been too late though and the puzzled look on her face told me so. The worst of it is, she actually lives across the street from me so I can't even fade into anonymity, although she probably already knew I was weird.

I am going to leave you with some pictures of Percy the Pigeon, who likes to take a daily bath in my garden. Usually for at least 30minutes at a time, during which time Seb has to stay indoors, as in the absence of squirrels, he likes to chase pigeons. I add these photos because I wish my life was as simple as this...

Now, I'll just pop my leg in and test the water temperature..

Now, if I just lower myself in gently, I'm sure I can fit myself into this..err..plant dish...

Ah, that's it. Give myself a good scrub now. It's been a whole 24 hours since I last did this..

Now, I will just lie here sunbathing for another half hour. That will really wind Seb up.

N.B I am fully aware that taking serial photos of pigeons is odd behaviour. Now leave me alone.

Just a Spoonful of Sugar...

Well, it has been a much quieter week. Thank goodness. Health wise I really needed some rest to try and get over this chest infection, which has lingered on a little longer than normal. I do feel like I am getting somewhere now, but will be getting checked out at the clinic on Tuesday just to make sure the IV's have done the trick. I also took delivery of my new oxygen concentrator, so hopefully it will allow a more restful sleep and make me feel a bit more refreshed in the mornings. I have only had it for 2 nights, and today I did feel more alert and rested so it looks promising. I suspect however that the real test will come when I get myself back to work (hopefully this week).

My good news of the week is that I have booked tickets to see "Mary Poppins" when we are down in London for the awards. I have my suspicions that this would not have been Andrew first choice of show, however I have been gently trying to enthuse by giving him regular renditions of "A spoonful of sugar" and "Chim Chiminey" (complete with actions I might add). I do wonder if karma was at work when after one too many outbursts of "A spoon full of sugar helps the medicine go down" I then suffered a 'sugar incident' when unpacking the Tesco shopping. Having taken delivery of my internet Tesco order, I was trying to unpack the bags and put everything away. This activity does make me considerably out of breath - there is something about bending down that makes me really out of puff (tying shoe laces are surprisingly difficult). I finally got to the end of the shopping bags, and was carrying a bag of sugar across the kitchen before standing on my tiptoes and attempting to launch it onto the top cupboard shelf. I was nearly blinded by the spray of sugar granules, before realising there was in fact a hole in the bottom of the sugar bag. Looking over my shoulder, I could see a trail of sugar making a glittery path across the kitchen tiles, along the work surface, and into the cupboard itself. Feeling tired and breathless I momentarily considered the idea of simply closing the kitchen door and leaving it for Andrew to deal with. But I'm not that cruel. Instead I opened the back door for some fresh air, started sweeping the floor and then climbed on a chair to reach the sugar laden shelf. Balanced precariously on the chair, feeling considerably out of breath as I try to clean the sugary mess, I see Seb out the corner of my eye, trotting past in a nonchalant manner, carrying one of my trainers. I dived off the chair to try and avert the impending danger, but it was too late. He was out the door and half way up the garden, rolling about in the wet grass with my trainer. Obviously having no footwear on, I couldn't go outside and Seb ignored my cries of "come baaaaaaaaaack". So, in a mature fashion I shouted loudly out the back door "Well you can keep the trainer. See if I care!" before slamming it shut. I really hope the neighbour wasn't in her garden.

I have been doing a bit of painting this week, as we are smartening up the bathroom, so needed some new pictures. I won't say much about the bathroom itself as it is a work in progress. Suffice to say that when Andrew asked to borrow my dad's 'stud finder' and 'pipe cutter', my dad made an emergency visit to find out exactly what he was up to. I'm sure it is all under control. Anyway, that also reminded me that I promised to post a picture of the sunflower painting I did for mums new kitchen a few weeks ago.

Sunflower

Bathroom Pics

Stardom




Warning: This is a VERY long post. What can I say? I had a busy week.

This week I had the daily mail interview, filming for the awards and the photographer taking pictures for the newspaper. So much for a week off work to recover from this chest infection. I am feeling absolutely shattered today, but my chest does seem to be improving, so hopefully a quiet weekend will get things back on an even keel.

I had the Sunday Mail interview over the phone on Thursday morning. It took 1 1/2 hours and she asked me so many questions I lost track of what I had and hadn't said. I think it will be very much a human interest story, as she wanted to tell my life story chronologically with facts about CF interspersed. She did explain that in order for people to read the article, you have to have that human interest angle, but I think I will find it very difficult to read, as I like to underplay any difficulties in my life, where as a good newspaper story will only serve to high light such issues. In fact the interview itself was emotionally draining, as she asked so many questions about both my sisters, and although I don't mind talking about them, it is hard to divulge such personal details to a complete stranger. On the positive side however, she was extremely interested in the issue of raising organ donor awareness, particularly as she has known someone who lost their fight with CF while waiting on a transplant. I hope that this message will come across in the article, and I will then at least feel that it has been worthwhile. I am not yet sure when the article will be printed, but it will be in the Tuesday health section.

I had arranged for the Daily mail photographer to come yesterday afternoon, after the filming for the awards, as I thought I could just wear the same outfit and my hair would at least be clean. However then journalist then informed me I had to "dress smartly, preferable wearing a skirt" with "no denims, no black, a pale top and plenty of make up". Ok then, that's me told! I then have a phone call from the "hair and make up artist" who would be popping round before the photographer arrived. This was getting more and more surreal, and I was becoming increasingly nervous about what was going to happen. As arranged the make up artist arrived yesterday afternoon just as the filming team were packing up, so I had to do a quick dress change and sit still to be 'beautified' before the photographer arrived. The make up was very nice, but far stronger than I would ever wear (although I'm reassured this is necessary for newspaper as the print quality is so poor). I am stating this now, in case I look like a dolly bird and anyone who has never met me thinks that my 'normal look'. Anyway, the photographer then arrived and promptly asked if he could take his shoes off so he could stand on my furniture. Okaaaaaaaaay. I then had to pose in various positions holding my nebuliser mouthpiece, while the make up and hair lady kept diving in between photos with a lip gloss and comb, to 'touch things up'. I kid you not. At one point I was standing in my bay window looking forlornly through the glass, while pretending to nebulise. Unfortunately my neighbours across the street chose this exact time to unload their supermarket shopping from the car, and I could see them looking over, wondering what the hell I was up to.

The 'photo shoot' then moved into the garden, where he asked me to sit on the grass. Seb having been shut outside in the garden clearly decided he would be left out no longer, so casually wandered into shot and lay down facing the camera. The photographer seemed to think this looked good and preceded to take lots of photos, asking me to move Seb into various positions. Have you ever tried to get a dog to sit where you want and face the camera on request?? Not an easy task. Seb however, played up beautifully for the camera, prancing around and jumping up on his hind legs to lick my nose repeatedly. When we moved onto to some other shots, that did not involve Seb, he decided it would now be a good time to steal the photographers bag and run round the garden at high speed so no one could catch him. Fortunately the photographer saw the funny side of the situation and in fact left me standing like a stooky, so he could go and take photos of Seb's antics as he raced round the garden, spurred on by the attention being focused in him again. Talk about stealing the lime light.

The filming was probably less stressful in a way, and not as bad as I had expected. They would pose a question, which I would have to incorporate into my answer, so that it looks on the film as if I am talking unprompted. This didn't take too long to do and I think I came across ok. Although I was inadvertently trying to put on my 'TV' voice. I am not sure what this will sound like, but I was going for 'polite and intelligent' and suspect I may just have achieved 'polite but pretentious' instead. I hope not. The cut away shots should be amusing, as they largely involved Seb. I was feeling particularly smug about this, as both Emmie and Anders (fellow CF'ers also going to awards) set the challenge that I would not be able to get Seb into the film. I didn't even have to ask, because as predicted Seb forced his way into the limelight by running back and forth in front of the camera. They asked me to throw a ball for Seb. I did so and Seb just looked at me, looked at the ball and ran off in the opposite direction. Prima Donna. They then asked "does he do any tricks". Tricks? Of course he does tricks I reply. So there followed a Seb variety show, involving play dead, hide the treat, dance, spin and generally look like a circus dog. I personally didn't think he was really up to scratch, being confused slightly by the outdoor setting and the strange people, however the camera man seemed delighted with his efforts. I always knew he was destined for stardom......Hollywood here we come.

Health and Horse Racing

Health wise, I'm not so good this week but I went up to the hospital yesterday and got kitted out with some IV antibiotics, so hopefully will be feeling in top form again soon. I had expected to need some IV's fairly soon anyway, but hadn't anticipated feeling quite so unwell quite so suddenly. It's funny how these things can just seemingly come from nowhere and catch you unaware. I also had a sleep study done last week, where I spent a night in hospital getting my overnight oxygen and carbon dioxide levels monitored. I had been experiencing some bad headaches on wakening in the morning, which can sometimes be due to a build up of carbon dioxide overnight, so it was best to get this checked out. The test basically involved some large clothes pegs clipped to my ears and a wire running from one peg to a monitor. Needless to say I didn't sleep very well. Fortunately however the carbon dioxide level was ok - a little higher than normal but not enough to cause the headaches (or any concern). The oxygen was lower than the last time it was recorded overnight, and it was decided that starting some overnight oxygen would be a reasonable step to take. Although in a way this signifies a deterioration in my health over the past months, I feel surprisingly ok about it all. Mostly because the purpose of the oxygen is to hopefully allow a more restful sleep (your body tends to wake itself up when you oxygen levels dip too low) and therefore can increase energy levels the following morning. At the moment my biggest struggle with getting to work, is the getting up and ready part, which I tend to do in slow motion due to feeling so physically tired. I am hoping this will be a little easier with the oxygen, although I appreciate that not everyone benefits in this way. I also appreciate that it is fairly unusual to have made it this far along the transplant route whilst avoiding overnight oxygen, so I really can't complain at all!

On the more positive news front, my mum and dad hosted a very successful horse race night in aid of the CF trust and the Butterfly trust (CF family support services). In one evening they managed to raise an impressive £2656.89. I include the 89 pence because myself and Corey painstakingly counted the money ourselves (please note that any error in this total is Corey's fault entirely). It was a good night, and I was especially pleased when my horse "Puff-a-Long" came from behind at the last second to win its race. However I think I could hear cries of "Fix Fix" when both Andrews horse, and his brothers horse went on to come first in their race also. Probably just a sign of good breeding....or something.

A small update on the CF awards front. I had a phone call from their PR agency this morning to tell me that they had sent out a press release regarding the awards, and a few people were interested in my story. Eeeeeek! In main, the Daily Mail were very keen to do an exclusive story (I think for their Sunday paper). I agreed that I would speak to the journalist, but that I really needed to know what angle they are taking with this story, and ideally would like to see a rough draft of the article before it is printed. I have had some cringe worthy experiences in the past when our family agreed to do some awareness raising articles at the request of the CF trust. One example was an article for a well known Sunday paper, where mum said something along the lines of "You have faith that treatments will improve, or a cure will be found". This was translated into "They pray together as a family every night that a cure will be found in time" printed under a large photo of the family. I was mortified going into school the next day, fearful that all my classmates now had this visual image of me kneeling with my family, our hands clasped in prayer saying a few rosaries before bedtime. Another article claimed that "Jacqueline plays basketball on a regular basis to keep herself fit". I was very interested to read this, as to my knowledge I did not play basket ball and I certainly hadn't mentioned basketball during the interview. I then realised they must have noticed the basket ball ring we had put on the side of the garage a few years earlier. Talk about making assumptions. Back in school again, I had to explain to my friends that no, I was not a secret basket ball player in my spare time and nor had I pretended to be one. Needless to say I stopped agreeing to do these articles after a while, and became very tired of the sensationalist angle they always have to take. However I do feel a certain obligation to raise some awareness of CF - in particular that it is no longer the childhood disease it once was. Most people with CF are now living well into adulthood, and more importantly, they are managing to lead a so called 'normal life'. If the article is going to be related to the awards (as opposed to a sob story approach) then I think it's a positive message for young people with CF, and their parents to read; the message that people with CF can go to university, can work, can get married, can be the proud owners of naughty little dogs like Seb, and essentially can live an enjoyable and fulfilling life.