Let's have a pinkandspangly post!

To start it off in a nothing-but-positive manner, I shall include a picture of joy - well if you ignore my feet that is, but it is a pic of my gorgeous shoes (with sparkly charms on and everything) and the hem of my skirt (with sequins and everything).

So that is clearly one exciting thing. Perhaps even more exciting than that is what happened on Friday, when I was feeling oh so down and puffy. My mum was round helping me wash my hair when the phone rang. As she went off to get it, I quickly reminded her to say that I am "busy" not "in the bath" as she has a horrible habit of absentmindedly telling that to strangers, and I heard her pick up the phone and ask who was calling. This was followed by a prolonged silence on her part, and then "hang on let me just find the cordless phone to take her". My heart started pounding as my immediate thought was it must be my transplant centre, why else would they insist on speaking to me. She brought the phone through mouthing "you want to take this!" with a delighted grin on her face so puzzled I took the phone. It was cosmopolitan magazine, I have been nominated by my sister for an award and have gone through to the final few. True to form, I started crying predominantly because I couldnt believe my sister had a)done this and b)kept quiet about it. Handily, my mother started crying as well so I couldnt even pass the phone to her, so I pulled myself together pretty quick.

As many of you know already I have the best family in the world ever but this really does mean a lot. I shant go on about it as I have a feeling that she reads this blog and takes praise worse than I do, but suffice to say it really touched me.

Next wonderful and spangly thing is my mum's leaving do, which was last night, was a great success. Loads of people were there to celebrate the entity that is my mother, and she cried sporadically throughout the evening, which is a good sign (she cried before she even entered the hall which is fairly predictable for her and a sign of joy not sadness). So big YAY for all of those things! I am ignoring lungs and health for this post but will merely add that I am at present still home (another yay) not Bromptoning encore en fois. Am off to admire my shoes some more!

Just a quick update and small apology really - I know I am being really awful at replying to texts and emails at the moment, so sorry all you lovely friends who are contacting me only to hear nothing! I am feeling really quite rough, which is quite disheartening as true to my 5 year old nature, I got terribly over excited about being released and of course immediately assumed I would be back to normal. Unfortunately (but hardly surprisingly) I am not, and not only that but I appear to be back where I was when admitted, lying in bed puffing and panting with a rather painful ribcage and back, and back on my O2 mask. Humph. I would swear but princesses never swear.

The hospital think I need to come back in, I am not convinced, so we have compromised, they have doubled my steroids, and I can stay out for tomorrow - which is what I really wanted as it is my mother's leaving fitznells gathering and there is no way I'm not going to be there - and then I have to ring the ward sunday and report on how I am feeling.

As those of you who know me can imagine, I have that pouty sulky face on which I sport when someone forgets to feed me grapes or carry me around on a cushion or similar. I think the trouble is that my muscles are all just so tired from the effort of breathing. And you know when you sprain your ankle or something you arent supposed to put any pressure on it? Well I cant just not breathe to give my chest a break, which is probably where the catch twenty-two situation comes in.

Anyway am stopping moaning and getting a grip. And more importantly a snooze. Ooh, good news is that I put our Emily's Angels target up to £3000 and we crossed it straight away! Plus it is nice and sunny out which HAS to make you smile doesnt it?!

I am being discharged! Yaaay!

The team swooped in this morning, glanced at me and agreed that I am indeed safe to be released back into society. I will finish my IVs at home, but have to come back up to clinic next friday so they can check that I am well enough to stop them. I can't wait to get home to own bed, good food, and my man and my family. Bliss!

Today has been rediculously busy as we went up on community newswire (which is a National press feed so we are thrilled to be on there!) yesterday afternoon, so we have already been receiving phonecalls from various Media areas who would like to cover our campaign. A big hurray moment, as my mum would say. At 8.30 we had an interview with BBC radio Bristol, and we have been doing and setting up various other interviews all morning.

I am feeling rather tired but incredibly smiley, as this looks like it is going to be a good high profile month for organ donation, and even better it looks like our campaign will feature strongly. So YAY for spreading the word and raising awareness. National Transplant Week is 9 - 15th July so if you havent bought your T-shirt yet you can do so now by clicking here and wear it that week with pride!

It's day 5 of my rest and recoup (coupled with some IVs to batter whatever is wreaking havoc), and I am doing well - yay! Breathlessness is muchly improved, as is walking ability, due to a rather good techique taught to me by the physio, which involves pursing your lips as you breathe out (splints the airways open, I visualise lots of tiny matchstick scaffolding-type poles for some reason).

I progressed so rapidly at first that they were talking about discharge "after the weekend" on Friday. Sadly I took this to be a promise of release today, when in fact it turns out that they want to review me on Wednesday, which is ward round day, when all the doctors come round, some donning their white coats specially for the occasion, and stare at you in unison. Technically Wednesday is after the weekend, so I suppose they didn't lie to me as such.

Yesterday I escaped for an hour in the afternoon and was wheeled down the road in search of a purchase. I feel that as inpatients we should be given an inner london allowance, similar to that which teachers get, as shopping whilst in a hospital situated on the Kings Road is not good for my bank balance. To my delight and sheer unadulterated joy, I found a full length deep pink skirt with sequins at the bottom which of course I had to buy as it would have been foolish and silly not to. My nurse said retail therapy beats IV therapy and I have to say I am inclined to agree!

My lungs have been behaving less and less well in the last couple of days, and yesterday, when I attempted to get my cereal and a cup of tea for breakfast and ended up sitting on the floor in breathless tears - this reaction incidentally always amuses me, as I seem to get tearful when I cant breathe which is possibly the least constructive move ever as then I cant breathe even more, well done Em - I decided it was probably time to ring the hospital.

They had decided to start Introvenous antibiotics on Monday but after an hour of supressed expletives and still no veins allowing access, we gave up and I went home. Still seem to be going downhill so I am heading in for a little rest. Am hoping to have internet access in there but if I don't, that's where I am!

A year ago today…

It was a beautiful sunny day like today. I had been in London in my CF ambassador role at a meeting the day before so this was definitely going to be a rest day. I decided to embrace the summer with open arms and put on a sundress, a nice new one, but hey if you save these things for special occasions you end up only wearing them twice, nice clothes are there to be worn.

Rather typically, I was sitting at the computer when my lung collapsed. There was no huge coughing fit, I merely cleared my throat and felt what I can only describe as a similar “ping” to when the elastic on cheap underwear goes (have just betrayed a student secret of cheap undiebuying oops).

Enough of underwear…I felt a small ping and my heart started pounding. Now I am not psychic, I have never claimed to be, and I do not understand these things, but what happened next to this day doesn’t really make sense. I had no other sensations at this point but I leapt off my chair and walked quickly to Claire (my oxygen machine) and turned her up to the maximum 5 litre flow. I then grabbed the phone, realised I was still connected to the bloody internet¸ disconnected and dialled 999. Whilst doing this I opened the front door got outside and shouted “fire!” (absurdly following advice from some cheesy teen magazine advising if you are being assaulted to shout fire as people are more likely to come to your aid – who says magazines don’t teach us anything.) it was only at this point I really began gasping for breath. So the inexplicable part remains, how did I know what was about to happen therefore what to do? I had previously had a collapsed lung but it was a completely different experience and felt nothing like this, so experience would have fooled me further. Personally I believe it is an innate survival instinct which kicked in, but for whatever reason I had managed to get outside before my breath disappeared completely and I was forced onto my knees.

My next door neighbour was at my side in seconds closely followed by two other men. Amusingly (well I found it so, even in my breathless state) having shouted “fire” it turns out the latter two were firemen. My neighbour took the phone from me as I couldn’t speak enough to be understood by the operator and explained as much as he could. I managed to get them to understand the world “pneumothorax” (a remarkable achievement considering the volume of my speech and the chaos at the time) and the ambulance was on its way. One of the firemen sat and held my hand till the ambulance came. I think the only thing I said to him was “please don’t let me die”.

That was the beginning of my biggest challenge yet. My lung had obviously had quite enough, as even after surgery, stapling, a day on a ventilator to allow it to recover, the tear refused to heal, and the lung still was not inflating in an agreeable manner. Because it would collapse like an inebriated teenager unaided, I spent 6 weeks with a suction pump attached to me during which time I was attached to the wall which was not fun, I could literally go no further than the end of my bed.

Never one to do things by halves I also decided to get a couple of infections to spice things up a bit and required the odd blood transfusion and once a litre of fluids squeezed in extremely quickly by a nice doctor when my heart was dancing around at dangerously high levels. I spent a month in High Dependency unit, where it is customary to spend 24 hours and my weight plummeted to 6 stone (I have never liked the waif look.)

At first everyone was confident the lung just needed time to mend. Then as the weeks progressed and I was still on suction to hold the lung up, confidence dwindled. There was talk of me staying in till after my transplant which filled me with a quiet despair. After 6 weeks of being stuck to the wall I finally came off suction. Prior to this I had been moved to a side room, as things were stabilizing, which was an oddly daunting experience as in HDU there is always a nurse with you and suddenly I was alone for the first time in over a month.

I learned many things from this experience. That even when things look incredibly black, there is still hope. That things are never black and white, even in medicine. But most importantly, that you are stronger than you think, and this gives me a strong reassurance for my recovery post transplant.

Today is a huge celebration. That episode lasted 3 months and I didn’t fully get back to normal till around November time, and look at where I am now. From being told I might be in hospital or have a chest drain in indefinitely to going dancing, sightseeing and generally being a bit loud and naughty.

If you have managed to read the entirety of this post I applaud you as it is ridiculously long, sorry about that. I want to end by suggesting a good deed for the day. A fellow lass waiting for transplant (not CF) suffered a similar collapse in February. She was on a ventilator for weeks and is still in hospital with no signs of an escape (also proof that I should be thankful for the recovery I made). She has a website with a guestbook on it, and her dad prints out the messages for her to read. Please go and leave her a message, about anything and everything, as I cannot tell you what the support from all my friends did for me, particularly on the hardest days. After that go out and enjoy the sunshine! YAY life!

This has been one of the busiest weeks in the history of creation of mankind. Well it has for me anyway. I really am so proud of my little lungs, they are champions really. Last weekend was the hen weekend! Woohoo! It was absolutely fantabulous. Saturday was probably the busiest days of the three, comprising of a bollywood workshop, meal out and a trip to the local club. All of which I attended. The instructor was called Dimple - fantastic name but made me slightly afraid as to me it suggested pole dancing or similar. Anyway she was lovely, a good combination of encouraging and praiseful, (is that a word?) yet pushed us a bit which we needed at times. We wafted around a lot attempting to be both graceful and energetic and it was really good fun. Most definitely provided me with a workout, and I had to switch to my mask half way (felt like a big deal, haven’t worn it out with friends before) but it was either that or pass out blue on the floor which I didn’t think was very in keeping with the bollywood style (no sitting down was not an option, I was having far too much fun.)

At the meal we presented the hen with a box of goodies including all the obligatory tack such as flashing L plate and handcuffs to attach to her person. With our hen still wearing all of these (with great style I must add) we trekked off to the night club, stopping en route for said hen to jump inside a fire engine and pose with a slightly stunned fireman. I must admit at the club I did feel overwhelmingly self conscious with my O2, as, let's face it it isnt something you see every day so people were looking. This was soon relieved by some bloke (nice guy, not the brightest crayon) asking me what it was. The music was loud so I simply gestured at the large word OXYGEN emblazoned on the side to which he paused looking at it then said "Yeah I know, but is it real?" Had me and the girls in stitches for some time afterwards at the thought of someone who overthinks things that much to go and get a fake oxygen cylinder and manage to obtain the tube and nasal specs to take out clubbing with her...

Sunday was a much needed “hangover roast” (thanks Mrs H) and Monday included a trip to the Green fair – a rather hippy event which we hijacked for our own purposes, namely to have a picnic in the sun with champagne, strawberries and scones. Imagine my delight when at the fair I stumbled across a stall selling adult sized fairy costumes! On finding a fushia pink one I was over excited to the extent of temperature induced pink cheeks, and could sadly think of nothing else until I had purchased said garment. I have a good reason anyway, I can wear it for the run in September. Otherwise I would never have bought it, honest...That weekend I also attended the 60th Birthday of a family friend, and instead of presents he requested donations for the CF Trust, raising over £1000. I am not very good at expressing myself in person about these things but I was very touched and it was a great do with muchly dancing due to his mauritian roots.

Being half term week, we took the opportunity to go away for a few days – cue minibreak to Wiltshire to see very special friendies and to stay in a cosy B&B in a room that must had been created especially for me – it was just SO pink and frilly! We had a wonderful couple of days down there, it was gorgeous and sunny which helped and we got out and about a fair bit, again my lungs doing admirably for such a busy time.

Yesterday was my youngest sisters birthday. She is 16 now, and I cant quite believe it. On our 16th birthday, each of us have had a big banner type thing made, which contains photos throughout our childhood with amusing captions creating a story underneath. I remember mine so well, I walked into the classroom of the music school I worked at on a Saturday morning and it was up on a huge silver sheet – obligatory naked baby photo and all. Smallest sister seemed to have a wonderful day yesterday anyway which is what it was all about – still not liking that she is so grown up, although she will of course always be my baby sister, the other one is 18 and living it up at uni and I still think of her as a tiny small! Mind you the two of them are far more grown up than me, I think they just let me pretend I am older therefore wiser to humour me.

Like I say, I am incredibly proud of my little lungs - they did an incredible job and I was able to do far more than I thought I would. Next week marks a year since my lung collapsed in a truly spectacular fashion. I am going to blog about it, so that I can get the memory out of my system (I am already having dreams about it which sounds v daft but am sure that will pass). If someone had told me the schedule for this past week when I was in hospital a year ago, I would have laughed. Well actually I would have breathed at them with a look of sarcasm and humour on my face. So what better way to mark a year later than to have been to 3 parties in a week plus a nightclub?! Just imagine what I'll be like with working lungs...

I went to that quiz on Saturday night, and had a really good time. It was very therapeutic in the way that it immersed me in the real world, that keeps on turning no matter what happens. It was held in my old school, and it is so strange going back there still! My whole family went and we joined forces with another family who are very old friends.

Aptly naming ourselves "Eat, drink and be merry", we were most definitely the most raucous team there! I am atrocious at quizzes, but somehow round by round we excelled, and it began to emerge that we were clear contenders for first place. Actually when I say somehow I know exactly how, my dad is incredibly clever and seems to know something about everything, and my sister is following suit with that ability to remember random facts and trivia. I do not have this ability, in fact I think I am the complete opposite where even quite simple facts and bits of knowledge just seem to drop out of my head. Sadly the round I excelled in was the Kids TV round - not my proudest moment, but at least I contributed!

I have been to the cinema twice this week, seeing Confetti and the Da Vinci code and thoroughly enjoying both. This is another perk of me doing much more walking in training for September as I have gained a lot of confidence in how far I can walk. It sounds stupid but I sometimes have visions of me walking through somewhere like a cinema, which if you add up the number of individual paces is fairly large, and then becoming too puffed to leave, therefore having to live there and survive merely on pick-and-mix and popcorn. Actually that sounds quite enjoyable, providing the pink and blue fizzy bottles which are my absolute favourite in the whole wide world are there...there werent any on either trip this week, but I was very brave and didnt return home immediately in disgust.

Other than that (and FAR too much talking, but I blame the interesting and fun people that keep visiting me for that) I have done very little this week in anticipation of this weekend. It is a very dear friends hen weekend and I am far too over excited about it all. I am unusually organised and have ordered double prescriptions of oxygen cylinders etc so that I am able to participate as much as possible; bring on a weekend of laughter fun and festivities! YAY!

Chris, aka Clockwatcher passed away this morning, 10 days after his transplant.

It has been a difficult and sad week for the CF community with a few people going through critical patches and two deaths. My thoughts are first and foremost with their families and friends at this sad and trying time.

My msn name at the moment is “stop the ride, I want to get off.” I am sure everyone has felt this at some time or another, in relation to a certain aspect of their life. That life is hurtling forward and there is nothing you can do to slow it down or to control the direction.

For some reason I feel the need to justify (more to myself rather than anyone in particular) my wishes to undergo transplant. It is a risky operation, and a big one. It is not a cure. They explain all these things when you go for assessment. But for me, it is vital that I am listed for it, that I then have this sort of suspended half life whilst I wait, and that I face those risks head on. For one central reason really and that is that I have to have something to aim towards and fight towards. I always do, that is why I set myself strange nonsensical tasks and embark on scatterbrained projects, because I need an aim to drive me forward. I need to focus on that transplant, and the possibilities which follow, in order to find strength when things do get a bit tough. And that is what works for me personally.

Either way, I think when receiving the sad news of someone’s passing, you should always take one specific thing from it: that you are still here. And I am. I am still here, still able to see friends, to talk and to laugh and to live. And whilst you cant change the past, and you cant predict tomorrow, you can take today and grab it and dance around a lot until you are thoroughly exhausted, (both in energy and in money if necessary!).

I am going to a quiz tonight with my family. We are meeting some family friends there, and we will have a great time and a good laugh and I will come home shattered and ready to sleep! Part of me doesn’t want to go out, I want to sit quietly and reflect and think and ponder my own future. But I will go and I will do so in memory and respect of those who have lost their fight, because I can and I should.

First thing and most important thing I want to say today: People rock. They really really do. No I havent seen Love Actually to many times, people are just lovely. I got so many lovely responses and messages from people after my last slightly self wallowing post, and well people are just lovely (I know my vocab is rather limited at present, bear with me!) If I said thank you to everyone every time their support perked me up, I would be saying it all the time. So thank you. And I wont say it again I promise!

I had just finished posting last Thursday, and was sitting trying to feel more motivated and proactive instead of feeling sorry for myself, when the phone went, and it was UK Transplant, asking me if I was available the next day to talk on ITN news about organ donation. Being shy and retiring as I am I paused - for breath - and then (slightly over enthusiastically) agreed to do it. So friday morning Sue Saville came round to ask me some questions, and Friday lunchtime on ITN news, there I was, taking my tablets with a doleful look in my eyes, and looking pleasingly yellow I felt, I normally think I look to well in these things! It went ok, bar the rather abominable piano playing which I was somehow talked into as they like to have clips of every day type activities whilst discussing the rather less mundane topics of transplants and death. All in all it went well, and a huge YAY moment for national coverage, plus of course I was wearing my T-shirt!

Last weekend was lovely - it marked 7 years for me and my man, and we had a really lovely time. My lungs werent complying quite as much as I would have liked, but we bought two new films instead of going to the cinema and had a little home movie session instead. Then went out for a really nice meal on the Sunday evening.

I have also resumed training (yay!) as my physio came round on tuesday to assess how things were going, and we went for a walk together - my first walk using my mask. It went fine, surprisingly ok, and better than that my oxygen saturations were good, and my lung function was also better than it has been in a while. So wooohooo!

I am heading back to bed now as my lungs are screaming at me and feeling rather bruised. Totally worth it though - last night was also absolutely fantastic as I went to watch QI being filmed. Stephen Fry is an absolute comic genius and it was extremely amusing. Brilliant night, but am now heading to bed to recouperate. Laughter is most definitely good for the soul and most probably the immune system, but it hurts the lungs somewhat when they are tiny wee!

After pondering for a while on whether to post this, I have decided to do so, as the whole point of this blog is to be honest, even when I dont think my own emotions are very good ones!

I found out today two people who I know of have had their calls for transplant in the last 48 hours! This is absolutely fantastic news, and when I read about Clockwatcher's on his blog I was over the moon, and immediately jumped onto the forums to post about it.

It is always such a lift when you hear someone else has had their call, it is a boost of reassurance to hear that another person has receieved those lungs they have been so desperately waiting for, almost like a confirmation that it does happen, as sometimes it can feel like this is all a bit ficticious.

But then I seem to get a slight down (ok, big down) feeling, one of jealousy I suppose if I am being brutally honest. I mean how awful is that?! I think it almost feels as though it pushes me towards that 50% that doesnt get it in time, which again is rediculous and unneccessary.

I think there is only one other person I know who is waiting who has not even had a false alarm, like myself, and whilst this has absolutely no bearing on whether you get your transplant or not, it sometimes plays on my mind. Almost as if the false alarm is the dress rehearsal, therefore necessary for the final performance to go ahead. Completely false belief of mine, as the transplant centre have reassured me, but I cant help my imagination being a tad overactive. But after 14 months of waiting, with absolutely no news whatsoever, you cant help but think about these things at times.

Right. Now that moment of selfishness and self-pity is over (see I do have them, I am normal!) I will pick myself up, tell myself what I would tell anyone else, which is to stay positive as it cant hurt and might well help, and tonight will have a celebratory drink for the two recent recipiants, here's to a fast and smooth recovery and a fantastic new lease of life with healthy new lungs!

Inspired by www.pimpmysnack.com on which students (I am assuming, as they have the most time and creative energy to spare) attempt to create ubersized versions of their favourite snack, my friend Justin and I got down to business on Thursday night to create our very own contribution, (which we are submitting to the site today) so here we have it: the method for our "Big up Bassetts" (ie gigantic liquorice allsorts).

1.Lay out ingredients. Marvel beauty of untouched individual elements.

2.Open pre-purchased allsorts and examine and scrutinize with great precision. Consume a few for research purposes.

3.Use red and yellow food colourings to create pink and yellow icings respectively by mashing appropriate amounts into fondant icing. Use pre-purchased allsort for colour chart type comparison.

4.Attempt to create brown icing by adding red yellow and blue food colourings. Create weird grayish pink colour, re-examine colour mixing knowledge you were taught in art GCSE, persevere, and eventually reach a vaguely pale brown colour (which will later be used as “padding” due to not making enough yellow)

5.Time to melt the liquorice sticks. With carefree abandonment chuck sticks into glass bowl above boiling pan of water, in naïve belief that they will melt in similar style to chocolate. 20 minutes later begin to panic as sticks start to mold themselves to bowl.

6.Hurriedly scrape sticks out of bowl into greaseproof paper and replace in bowl. Cover, realize water is boiling over, and uncover.

7.After a further 15 minutes, examine paper parcel hopefully and discover still very solid sticks. In a fit of rage, hurtle entire paper parcel directly into boiling water.

8.Finally achieve some sort of sticky goo consistency, tip onto greaseproof paper sheet and begin to gracefully roll into shape. Discover liquorice is in fact substance of satan and hammer unrelentlessly with rolling pin. Allow to cool and cut into neat(ish) square shape. Use discarded edges to form round centre.

9.Return to coloured icing blobs. Split pink into two balls and roll into squares to sandwich liquorice square. Roll out yellow into long sausage shape, realize it will appear too thin round its liquorice centre and in a moment of genius use pale brown failure icing to pad the centre of the yellow tube (as discussed in step 4).

10.Repeat step 7 with further liquorice strips, but with newly discovered wisdom (having learned how resilient liquorice goo becomes) wrap in two separate packages in required oblong shapes before boiling. Assemble with matching fondant sticks to create checkered allsort.

11.Place “big up bassets” on a decorative surface along with original allsorts, and admire handiwork. Consider becoming professional chef or similar. Far too much effort and energy required for this project, but amusement value and final result definitely worth it.

Since I decided to get all over confident and plaster photos all over my blog making updates has become decidedly more tricky, as I am not quite as good at this as I like to think! In my training blog today I wanted to put up a couple of pics of me walking up and down the road, and managed to post the same one 3 times. Still not quite sure how!

Bank holiday weekend has been and gone, and it was all gorgeous and sunny so I hope everyone had a good one - mine was great! I had lunch out with my parents on the Saturday, which was lovely, and then Sunday and Monday some lovely friendies from Uni came to visit. That was great, as I havent really seen either of them properly since we graduated, so it was great to spend some good time catching up and gossiping!

In some ways I still cant quite believe I am no longer a student, I think because I am in this limbo between studenthood and working grownup I can still con my brain into thinking I am still a student, but also it just doesnt feel like the University experience, which seems so large and daunting when approaching the beginning of it, is actually over. The photo I have included is of me and some of my friends (including the two lovely ladies who came down this weekend) at Graduation. I had been in hospital for 7 weeks, and was still incacerated, trying to recoup after my collapsed lung, its subsequent operations and resulting infections. The hospital wouldnt confirm whether I could go until the day before, as they wanted to see that I was physically ok to do so, but I was given day release and it really was the best day.

We went to Tesco's today, normally a rather mundane activity, but as we drove past the entrance, we saw the electronic scooter style wheelchairs lined up. Feeling emboldened and egged on by a certain man (who I think wanted a laugh at my driving) I decided to test-drive one round the supermarket for the first time. The first 15 minutes were incredibly amusing as I struggled to get to grips with just how sensitive the controls were, and every time I attempted to move forwards in a gentle and sedate style I would rapidly shoot towards some poor unsuspecting soul in a jerky and rather frightening manner.

Eventually I got to grips with it quite well, and managed not to kill/damage anyone or anything. It was really good fun, and I was enjoying the rather empowering feeling of dictating where I wanted to go in the shop (I am usually sitting in Denzel therefore my "pusher" gets to decide) and so I must have been grinning a bit manically as people kept talking to me! Still would rather be a grinning maniac that people feel they want to talk to than go unnoticed. No wonder I studied drama.

I just updated my training blog and on doing so realised (yes I am very fast and very bright) that there is a title option, and also that I have been filling in said title option on that blog. Annoyed at my own incompetence (observant readers can probably see there are absolutely no titles whatsoever on this blog) I rushed over to this one to see if I really had just not seen the box, but there is no such option here! I wonder why? Maybe the template has been rejigged since I started blogging, or perhaps when I managed to make my layout go all wonky I somehow deleted the option (which would mean it was here and I did overlook it for approximately 4 months so I hope that isnt the case).

Enough ramble. I went for training session number two which as you can see on my other blog was a success. I am enjoying it in general, not to mention terribly over excited at the prospect of septembers event being great fun, and I think there are many benefits to this plan of mine.

One of the best things about this training is that I am learning to pace myself. I am absolutely appalling at doing so - as I usually only do things that require a sudden spurt of energy, such as getting dressed, or getting from the house into the car, I push myself to rush through it and get it done, and then sit gasping and breathless with a usually prolonged recovery time. I have been told off for this by various physios, however on speaking to other people with CF I think this is quite a common method of attack. Plus I am just terribly impatient, and doing things slowly frustrates me.

Perhaps it is because although I have the lungs of a 95 year old (actually, one lung function print out I read said "lung age: over 100 years." Mmmm, wrinkly!) my mind, motivation and of course the rest of my body and health is that of a 22 year old...well mind is sort of that of a toddler but I digress. The point being the rest of me wants to run around as normal. When sitting stationary, I feel like I could leap up, stride out of the door, round to the shops, pick up a bag of shopping, stride back and cook a meal (stop sniggering all those people who know me better than that). And I think even though I know I cant do these things, when it comes to physical activity I have to do, such as washing my hair, I find it very hard to do in an abnormally slow fashion.

So this training is making me pace myself. Because I know I have quite a distance to walk, particularly if I dont want to get stuck at the other end of the road, and so I set off at a sensible and regulated pace. And according to medically people that is a much more sensible way of doing things and much better for me. We all know what's coming....YAY!

Mad or just completely insane...?

I had a "brainwave" a few weeks ago (I will do myself damage one of these days) in fact I think I was in hospital at the time. Places for the Women's Hydro Active challenge opened at the beginning of April, and this reminded me of last year, when I went along to cheer on a group of lovely ladies who ran it for the CF Trust. My mum and sister were amongst the runners last year, and both did incredibly well, despite my mums training regime being somewhat interrupted by me being in hospital all summer, so she did most of it on the exercise bike in my hospital room! It is this event which my mum is pictured in the entry below, energetically (and noisily) making her way round the track.

The atmosphere was just incredible and it was the most wonderful day, with everyone cheering and encouraging each other. I had such a great time, and decided that I would quite like to join the fun this year, so I rang the helpline to verify that I was ok to go round in a wheelchair, and signed up!

Being pushed around in good old Denzel isnt really a sponsorable (not sure if that is a word...it is now) achievement in my opinion, so after speaking to my doctors and phsyios, I have decided to try and do some training with the aim of walking the final stretch of the course. Obviously should I get called for my transplant or should my health decline this may throw a spanner into the works, but there is no harm in aiming for it, and a wonderful team of people are rapidly accumulating to accompany me, so together we are hoping to raise lots and lots of money for the CF Trust. I have started a new blog to keep track of training and challenge related info, and am muchly excited already!

If you want to join us please let me know, the more the merrier. Oh and the chances of us wearing something pink and sparkly is beyond high!

We are now sponsorable, yaaaay! Please visit www.justgiving.com/emilysangels and give as much as you can. Muchly Thanks!

A fellow blogger whos son has diabetes wrote an entry which included a link to my post on life and its worth (this one). Reading said entry, plus the varied comments from other people which followed inspired me to post an old bit of rambling (which I am fairly sure I havent posted before, sorry if I have) on mental attitude and positivity. I wrote this after a discussion on the CF forum on positive thinking. There were many different opinions, many arguing that this was the way forward but equally as many stating that actually it isnt as easy as that, some people cannot just "think" themselves happy. Oh and the picture included is to illustrate why I used my mum as the example of genetic factors! This was during a 5k run last year, and from the picture you would be forgiven for thinking she had just won and not that a)She was less than 1k into it and b) Approximately 15 000 people had already past this point! Anyway, here it is...

Attitude is everything?

There's been a really interesting discussion on the boards tonight, and it’s got me thinking. It’s about positive thinking, picking yourself up, and moving on with life. Anyway due to some v good points raised in the discussion, I was thinking about my own state of mind and its origins so to speak. Basically I am an optimist, or that is what I would class myself. Mind you I label myself as that with the following quote in mind:

"I am an optimist, unrepentant and militant. After all, in order not to be a fool an optimist must know how sad a place the world can be. It is only the pessimist who finds this out anew every day."

I love life, I have a great time, and I am generally a very happy bunny!! But ok, how does this state of mind come about? It’s definitely not down to circumstance, I know that much! Is it pure luck? Was I born with it? Is it genetic? (Anyone who has met my mum could argue that that is the root cause) or then again, environmental? (same evidence applies).

I have to say, I am inclined to think it is because I talk myself round to it. I am definitely lucky that I find it easy enough, most of the time, as I am pleased by the simple things in life (simple minds, simple pleasures) but at other times it takes all my energy to do so, as when things get tough you sometimes have to REALLY work hard to decide that you wont let it beat you, no matter what.

Maybe it is a matter of choice. A matter of taking responsibility for ones own state of mind. Maybe it is far harder than that, and more beyond our control than we can imagine. Or maybe it is a mixture of both. In which case positive thinking and a determination to enjoy what you have and make life great can’t hurt can it? After all, one life, one chance, and whilst we can’t change circumstance, we can change how we think.....

nb - have only just noticed photo was missing. Am technological wizard. Honest.

Today was my yearly checkup at Harefield, my transplant hospital.

It was a bit surreal, I just always have a slight knot in my stomach when going there, as it makes all this transplant stuff seem so real (stupid comment as it is infact real) but that is where the actual operation will take place etc, so it does feel a little strange going there. We drove up in Sammy car, and arrived about 10.30ish to get all the tests done, blood, Xrays, lung function, ECG and obs.

All the staff at Harefield are just so lovely - the phlebotamist (bloodtaking lady for those unmedical bods) chatted away to me telling me which her favourite bottle was (a toss up between the one with the red lid as it matches the blood nicely and a slimline black one as it looks rather classy) which made me giggle, always nice when they are removing 16 bottles of blood from a vein they just told you was so small they would have to use a paediatric needle.

Tests all went fine, and then we went across to have lunch and a break, and then back to the main centre to wait to be called into clinic. I was seen today by one of the surgeons, who was very nice and thorough and went through everything much the same as last year.

We talked about the transplant rate at present - last year performed 26 lung transplant ops (I think around 14 of those were double). He also said this year has been slower so far, although this month has been good. These numbers are just so small, and a really good push for me to keep ploughing on with this campaign. I think the biggest thing I want to highlight in the campaign is the number of next of kin who refuse consent (many overriding the persons registration on the donor list). This is why it is SO important to talk about your wishes with your next of kin. Which of course is why we did the T-shirts, as if you own one of those your wishes are pretty clear! www.livelifethengivelife.co.uk buy one buy one buy one!

OK getting off my milkcrate and sitting down nicely now...So everything went fine at Harefield, I am now all taped up on a groovy little portable heart monitor for 24 hours whilst they check out my heart which has got into the habit recently of dancing about merrily which I do not appreciate.

Easter weekend was fantabulous, lots of family orientated stuff including the traditional annual easter egg hunt at my grandparents (in which I may or may not have thought we were searching for 9 eggs each when infact it was 8, therefore had everyone else looking for my extra ficticious egg for about 10 mins before my grandma realised) and my bedroom is now a GORGEOUS pale pink with a deep dusky pink wall behind the headboard of the bed. YAY!! Very excited, it is beautiful, fit for a princess you might say...

Hurrah for Good Friday! Had a lovely lazy morning, munching bagels and cream cheese, and watching Pride and Prejudice (the film version, which whilst I still prefer the TV series I did actually quite like, there were some lovely shots and interesting uses of Mise-en-scene....geek alert, shutting up now).

This afternoon, the girlies came round, bringing our traditional "as much food containing sugar and E numbers as we can find" hoard. And it was an impressively vile mountain of sweets, containing the regulars like flying saucers and haribo, and a few new additions, such as rainbow coloured fizzy strips (sickeningly fabulous). It was a fantastic afternoon, muchly giggling ensued, hightened by being slightly high on E numbers I suspect.

When they arrived I was very rudely still eating my lunch (it was 3pm but I had a late breakfast!); I thought they were acting a bit weirdly, and as soon as I put down the bowl they presented me with a gorgeous jade green photo album, which will hearby be known as the book of fashion sins I think! It was crammed full of photos throughout our highschool years, and as I flicked through it this huge torrent of memories came flooding back. The greasepaint, relationship will they/wont theys and adrenalin rushes of the school plays. The consequential and infamous cast parties, which would always see someone ending up in a new relationship/dumped/arguing with a friend/similar all important highschool crisis. Sleep overs, in which we consumed hideous amounts of sweets similar to those consumed today except for some reason we took delight in piling them all up on one huge tray and creating photographic evidence of our consumption). Parties - birthday, christmas, new year, halloween, whatever the occasion...and it is worrying how many of them involve fancy dress!

Prompted by this photo album, we spent the majority of the afternoon reminiscing, its funny so much of it seems so long ago (god I sound old) but then again a lot of it feels like it was only yesterday. It really reminded me just how lucky I was to have such a jampacked life at that age, I was involved in so many clubs and social activities and really had a great time at school.

OK enough nostalgia! Needless to say I had a fabulous day, and am happily tired now (tired in that nice way of I have actually done something as opposed to just being drained). I am starting to look less pale today too, woohoo! Looking forward to a weekend of familyness, with a nice big easter sunday meal at my grandparents to look forward to. YAY.

There's no place like home....that saying is so true!

I got home and just lay down on my bed, it was absolute bliss. As I lay there, I had the weirdest sensation, like all my muscles weakening, and my breathing slowing down, it was actually quite frightening. Then I suddenly realised it was just my body relaxing; I think I had literally not relaxed properly for 2 1/2 weeks which is why it felt so strange. To be fair the hospital environment is not particularly conducive to relaxation, and the saying "a hospital never sleeps" is definitely true.

I fell asleep pretty quickly, and next thing I knew I was being woken up at 9.30 for a bit of dinner. Fell asleep again after that and that was the most amount of sleep I had had in weeks. YAY!!! In the hospital I had IV drips started at intervals of about 4 hours, and the most sleep I ever got was between 1.30am and 6am, so it was a gorgeously indulgent feeling waking up at 10.30 yesterday morning.

Tiny lungs are beginning to behave as well, so am determined to build up a bit of strength and start doing more excersise, as I found the daily walks up and down the hospital corridor quite rewarding, as I could watch myself build up pace and distance, and then reward tiny lungs with haribo/hot choc or similar (ok my lungs didnt really feel the full impact of the reward but I enjoyed it).

Best feeling ever - my gorgeous hot full to the brim bubble bath that I was fully immersed in last night. And the garden looks gorgeous too, everything is so much greener and things blossoming and budding everywhere. YAY.

Homeward bound? It looks like it - woohoo!!

Have been holding off all day posting this, just so I dont tempt fate, but it is looking like I am off home because the pharmacist just came up to write up my TTAs (that stands for drugs 'to take away' I think, although have never actually had that confirmed). The docs this morning said that I could go on the provision that my blood results were ok, and whilst I havent had that vocally confirmed yet, a pharmacist being sent up is a fairly good indication as the doctor will have had to write the script in the first place.

So just finished my last set of IVs and they are not finishing a moment to soon, my headaches and nausea are definitely getting worse with them so YAY for no more IVness! I have an absolute mountain of stuff to pack up - I accumulate things very quickly here, but I love that, it makes it feel more homely. How I am going to get the flowers and the balloons home I havent quite worked out yet! We are waiting for the doctor to come and have a quick final chat before we take the longline out, and then I can go home!

Things I am most looking forward to: my bed, sitting on my sofa with the fire on in the evening, gorgeous home cooking, fresh air and sunshine, and most of all, having a long hot bubble bath and being able to completely immerse myself and not have to keep a bandaged longlined arm out of the water. YAY!!!!

Ooh, and have added a guestbook, as it has the option of posting private messages. (argh this entry just posted itself without me asking it to again - I wish my computer and I got along better). So hopefully next time I write will be from the comfort of my lovely lounge, looking out onto the garden at the birdtable, which I am fairly certain wont have had any birdseed put on it since I came in. Poor george!