Hydro active challenge to see off CF

The big day itself!

2007-09-18T15:21:00.001+01:00

Hydro active 2007.

I woke up bright and early raring to go. Long-suffering A was forced out of bed on his only day off to make me beans on toast (figured I probably needed something a bit more substantial than a cereal bar) and I in the meantime spent an inordinately long time donning my pinkandsparkly fairy costume.

I drove my grandma, (who in a fit of madness had signed up to walk it too) and grandpa up to Hyde Park, and complete with rather large and glaringly pink banner, we walked up the road towards the main gate. As we reached the meeting point, I could already see clusters of pink winged people and other bright yellow ladies (CF Trust T-shirts) I got a round of applause as I arrived and whooped appropriately in return.

After some meet and greeting plus plenty of posing for photos I hollered at the Angels to head towards the starting line as it was by this time 5 minutes to 11. We trouped across the field, me leading the way (ON FOOT still can’t believe it) and squeezed onto the track to join the other 20 000 odd ladies who were eagerly raring to go. Events like this are just such amazing examples of human spirit. People walking for loved ones, for those they have lost, for those that have overcome adversity…I just love the atmosphere.

We were whooping with glee as we set off, helped somewhat by the rather nice group of armysoldiermen who were waving at us from a balcony. I quickly lost interest in carrying the huge banner I had made and my ever faithful Angels took it in turn to carry it (mum swooping in if ever a camera came into view).

Hydro active 2007.

It was gloriously sunny with a strong breeze; fantastic for keeping cool, not so fun for those carrying the banner and trying not to take off. First k was fine, and the second, then pain round my ankles began to kick in. I could feel the fluid swishing around (mm) and my ankles tightening as they inflated even more. I was determined to keep up a good pace as after all this is supposed to be a challenge; so many wonderful people had sponsored us I felt I really had to keep going briskly to make it worth their while.

As we approached 4k my legs ankles and feet were really beginning to hurt. To keep myself going I just remembered how last year it had been my entire chest and my lungs aching and burning, and how incredibly lucky was I just to have dodgey fatfeet this year instead of tiny fading breathers. Seeing I was struggling a bit Lucy gave my hand a good squeeze; nothing said but enough done, I knew I would get to the finish.

In the final k we approached a slight incline, various angels getting behind me to give me a bit of a helping hand! Then suddenly I could see the leafy shaded corner and had a flashback to seeing my two grinning physios waving me over to get me out of the chair exactly a year ago.

We turned that final corner and were hit by a wall of cheers; people lining the edges of the course shouting and encouraging everyone on for those final 500 metres. We moved ever closer to the finish and I couldn’t suppress the joy that was bubbling up inside me. With a rather loud whoop I broke into a run hearing “oh god she’s running!” from various shocked Angels and sprinted (well stumbled) towards the finish line.

The feeling of joy was just indescribable; what a rush, what a buzz, I just felt so alive!! People were throwing their arms around me, hugging me, squeezing my shoulders, everyone just so thrilled to be part of an event which was a million miles away from last year.

It wasn’t until we moved towards where the medals were being handed out that the tears came. Never in a million years could I have dreamt how this summer would be. Every day is so amazing, days like this even more so. I love my life so much, am so incredibly lucky, and to be able to share so much joy and celebration with so many people was just fantastic.

My ankles are still a little swollen but I feel absolutely fine. I am still grinning from ear to ear about it all, a huge well done and thank you to all my angels and lets hope the money we have raised for the CF Trust will go to find a cure and prevent children born today going through what I have been through.

www.justgiving.com/emilysangels2007

Some more piccies of the day:

I may have spotted the camera.

Thank you Angels xx

48 hours and counting!

2007-09-14T08:28:00.000+01:00

oops I have let this blog slip a bit haven't I....

But fear not, I am well and truly ready! Last weekend I walked the Harefield Fun Run and so am a bit more confident now that I can do this. All that really remains to be done is to try on outfit, make large banner...fun things like that.

I am a little worried today as my feet swelled up yesterday and haven't really gone down. I am going to ring Harefield later but I am just really hoping it doesn't affect Sunday. It can't really surely; I mean if I went there with a collapsed lung last year, some puffy feet surely can't really stop me!

Tortoise and the Hare

2007-08-23T13:12:00.000+01:00

FVC: 2.84 FEV1: 2.32

Treadmill: Half an hour!!! Av 4.7km/h
Cross trainer: 2 mins (what can I say I was knackered)
Weights: only arms completed.

I decided to try and attack this from a different angle this time. No matter how hard I try, when I am pounding away on the treadmill at 5km/h I can't seem to push myself over 20 minutes without risk of flying backwards off the treadmill cartoon-style. So I figured as distance is the important thing here (not speed) I would slow down as my legs began to seize up, but still keep going. And it WORKED! Added another 10 minutes onto my time, and felt ok afterwards! So if I can just creep up 5 minutes at a time over the next month, I think it'll be feasable that I can complete the whole thing. WOOHOO. Obviously not quite as fast as I would have hoped (was hoping to do it in an hour, hence the whole training at 5km/h malarky) but hey as others have pointed out, if I finish the whole thing at all it will be fantastic. So that's all I'm going to aim for.

This post is entitled Tortoise and the Hare for that reason. "Slow and steady wins the race" and all that. Actually this is a very important motto for me, as someone told it to my mum early on in my transplant when I was struggling to move forward at all, and it kept her going, then when I was conscious enough to understand things, kept me going too. Hopefully on the day it will prove correct again.

I got my running, no wait, walking number through in the post yesterday so now it is very very real! I am still trying to decide what to have on my banner. Oh did I not mention that? Clearly this isn't going to be hard enough so I will be attempting to carry a banner explaining my scenario all the way round the course. Have already got in mind people who I will pass it over to when my arms are killing me...

A brand new experience!

2007-08-17T11:39:00.000+01:00

FVC: 2.67 FEV1: 2.16

Treadmill: 20 mins av 5.2 km/h
Bike: 5 mins
All weights completed

This morning was really good. My mum and sisters picked me up bright and early as they were heading to aqua aerobics. I saw some of the class, it looks like fun, but I'm just not confident enough yet to go at someone elses pace; what if I need to stop then look like a fruitcake on my own? Anyway, whilst they splashed around "gracefully" I took myself off to the gym and did a really good workout. And even more excitingly I JOGGED for the first time!!!!!!! OK it was only for 60 seconds at a time before my legs felt like rubber, and I had to grip the handlebars as I felt so unsteady, but still YAY. Kept above 5km for the entire thing (except for 2 mins cool down) and felt extremely....well worked out afterwards.

With that and the bike combined I did just over 3k. I am a bit worried still though, less than a month to go and really I would have liked to be doing 4k in one go by now....I think September may be more of a struggle than I anticipated but am still determined to do it.

Good old treadmill.

2007-08-06T12:00:00.000+01:00

FEV1: 2.30 FVC 2.77

Treadmill: 18 mins av 5.2km/h
Cross trainer: 4 mins
All weights completed
Sit-ups completed.

I went with Abby to the gym today. It's so much easier to motivate yourself when you have someone to go with. I headed straight for the treadmill, my faithful favourite whilst Abby went for the rowing machine which looks far too complex and scary for my liking. I maintained 5km/h for nearly all of it, but slowed down for 2 mins and sped up to a jog (first ever time!!!) for 2 mins. Jogging was very hard work, it must be different muscles that you use than for walking as my legs felt like jelly after seconds. Still it was a good morning and I feel invigorated for it. Just hope I can get my distance up before September...!

Why you should sponsor 2...

2007-07-24T08:27:00.001+01:00

Mary

When asked to write about my very special angel Mary, I thought 'of course', 'easy', 'why not?'.Now, here I am sitting down to write words I imagined would flow and I fear it might be impossible.

How do you possibly pay homage to one of the best people you have ever met? How do you pay tribute to a friendship, which spun the best part of 20 years??? Where do you find the perfect words only suitable for the perfect girl? How do you convey a lifetime of memories and a forever of gratitudes? I don't know!!!! I'm lost for words. (and I wish Mary hadn't distracted me so much in English class!)

I will however, do my best, and I'll start by telling you about her.

She came into my life early on, I think maybe in the swimming pool. And that was the start of it. The beginning of a beautiful, honest friendship, that I feel honoured and proud to have been half of.

Mary was the epitome of beauty, joy and radiance. She lived a life rich in everything and touched every heart that came her way. You could not but love this energising creature with a smile and a laugh that were utterly infectious. She never complained and took her illness in her stride. Always brave. Patient always. She was never 'sick', she just had CF. It was never an issue, never a problem, just a way of life.

She had hopes, dreams and aspirations just like every other girl. She had more courage and bravery then all the soldiers, in all the armies, in all the world. In lifes battles, nothing got in her way. She was so determined always. She was going to overcome her condition and never wanted any special treatment or recognition for her heroic ways.

Mary packed so much into her life, and she gave so much joy to mine. She liked holidays, spa trips, shopping, loved to gossip with the girls. Loved shoes, loved handbags, loved make up, loved fashion. She loved life. And most of all, she loved Alan.

As we grew up and got older and I started to read up and understand CF. I think I used to worry more about the future then Mary ever did. She had a wonderful attitude and would always say to me, 'what will be will be Clo'.

I knew God had great plans for her, I said this to her once and she said 'Oh, I'll make my mark yet!' Not only Mary, have you made your mark on the world pet, you're forever imprinted on so many hearts, in so many ways.

In 2005, Mary fronted the Irish Organ Donor Awareness Campaign,'My Life, Your Choice'. Although in desperate need of double lungs, Mary did his for transplant patients nationwide, not for herself. She simply wanted to raise awareness as the number of donors was depleting. On so many times she said, 'if one person gets a call after this, it will all have been worth my while'

This was Mary down to a T, always thinking of others, everything you would ever look for in a friend she had, Loyalty, Honesty, Beauty, Inspiration, Joy, Passion and support amongst so much more. She had a wonderful way of making everything ok, she often had an uplifting verse or poem or a cheeky grin or a simple 'cop on' or 'pull yourself together' that you couldn't help but pay head to. And God could she make you laugh, often til your sides hurt. (or until I thought she'd choke from the cough)

Mary was the type of person who when I was about to finish the book, PS I LOVE YOU, sent me a flower that day because she knew by time I got to the last page I'd be a blubbering mess. The card simply says 'because I know you'll be sad xxxx'. It was always four kisses. I'd give her three back. For that and for so much more, Mary, Thank you. She's the kind of person who had a card waiting to welcome me home after my travels. The sort of friend who organised my surprise 21st party.

We had plans to go to far away places and do so many things. Recent conversations often began with 'after your transplant', we'll do this and we'll do that, let's go here and let's go there. Of course we had unrealistic dreams too, but that's what dreams are for.

One of our plans from years ago was to drive across Europe in a camper van. This always makes me smile. And never fails to make people who know us laugh; everyone knows we wouldn't have space in a camper van for our shoes, handbags and cosmetics! Never mind actually journey somewhere in one! We may have set out on the trip but I have no doubts it wouldn't have been long before we phoned home for money to check into some posh hotel with a spa! And the laugh we would have had!

We planned our weddings, our dresses, bridesmaids, flowers, the works. The idea of Mary never been in any of that never ever came into play, not for a second. I was sure she'd get transplanted and live lifes dream. Her own positivity brushed off on all of us.

CF never held Mary back, if anything it gave her more of a push to do everything possible for her to do. She had such an amazing Aura and such a good outlook on life. All of Mary's CF friends whom I have befriended seem to all share this trait, I used to joke with Mary tat it must be built into the gene! I admire all PWCF and I know Mary did too. She found much comfort and solace, often inspiration in her CF friends.

To loose a friend to CF seems very wrong, I wonder why there is no cure, wish I was a scientist so I could invent one. Wonder why she couldn't have had one of my lungs (if we were compatible), I often used to ask her wouldn't one of my lungs be better then two of hers! She'd just laugh. I'd have given her both in a flash. I hope she knows I was serious.

To loose a friend so young is obviously something you never imagine. It's unfair, unjust, heartbreaking and wrong. To loose Mary is like having the life sucked out of life, its wrong beyond belief; it's something I can't describe. Something I know has not yet hit me. It's a huge void, a massive emptiness. It's lonely.

Under all the negatives, I feel honoured to have had a living angel in my life. I feel comfort in the fact she is now finally breathing easy and resting which she so deserves.

I feel thanks. Thank you Mary. For the good times. For your smile. For your flowers.

Thanks for your stories, for your gossip. Thanks for teaching me what life is about and that it's a gift. Thank you for your courage and bravery. Thank you for all the times you made me smile and the times you made me laugh so much we cried.

Thanks for the memories. Thank you from the bottom of my heart for being you. Sleep tight and breathe easy. Mind me from up there and give Daddy a kiss. I love you to the moon, beyond and back. We'll all be along in a while.

Keep me a seat.

xxx

This piece was written by Mary's best friend. Please, help us see off CF. www.justgiving.com/emilysangels2007.

Back on task

2007-07-24T08:12:00.000+01:00

FEV1: 2.16 FVC 2.65
Treadmill: 16mins at 5km/h
Treadmill on high gradient (hill training) 5mins.
Cross Trainer: 5 mins
Weights completed
Sit-ups done.

After naughty NAUGHTY slacking I have been back at the gym, hurrah! I went with my mother (it's always better with two) and decided to try and go up a gear despite the small pause in training. Having completely lost my jogging bottoms I had to put on what I may or may not normally use as PJ bottoms (they look like jogging bottoms, honest) resulting in gales of laughter from my mother.

I upped my speed and also increased the gradient a bit, and managed surprisingly ok. 5km/h is what I wanted to get to speed wise, and now to work on the length of time I can maintain it really.

Tiredness has come back into play. I am thinking it's probably because I am doing too much, but I am struggling to slow down. This week will be quieter though (that's what I said last week) and I will try and rest up a bit more.

Although I haven't been at the gym recently, I did do a huge walk round london the other day which we calculated to over 3km, and am still continuing to use the stairs all the time etc to try and maintain a basic level of training. Still moving forwards, but 5k seems like an awfully long way away, I really hope I can do this....

Learning to space it out.

2007-06-23T15:48:00.001+01:00

Current FVC: 2.45 FEV1: 2.02

ooh I have been terribly naughty and not keeping this blog updated nicely!

OK so Tuesday:

Treadmill: 20mins at 4.3km/h
Cross Trainer: 5mins
1/2 Weights completed (I was tired).

Annoyed that I didn't do more at the gym, on Wednesday I did a 20 minute walk into town. This was clearly pushing it a bit however as I struggled to get back to the car, and once I got home fell straight asleep for 4 hours. I may space out my exercise a bit more than that in the future...

Pink in a world of black and white.

2007-06-05T18:12:00.000+01:00

FVC: 2.45 FEV1 1.97

Treadmill: 16 mins
Bike: 4.30 mins
Crosstrainer: 5 mins
All weights completed
Sit ups completed

Another round at the gym; I am getting slightly more confident every time. Even though I still blatently don't fit in (everyone else seems to be in white Tshirts with black bottoms, I am in a pink stripey vest top and pink jogging bottoms) I am getting to know the little customs - wiping down the equipment after use, working out which attachment goes on the weights, being able to work my own padlock first time, that sort of thing.

I was overjoyed at my progress on the Crosstrainer, which I found incredibly hard last time, until I looked at the screen and realised I hadn't upped the level at all therefore was actually working less hard than last time. Never mind. On the whole, pleased with my progress, and definitely enjoying it still!

How lovely bobbing along...

2007-06-04T17:44:00.000+01:00

FVC: 2.27 FEV1: 1.94

Went swimming yesterday, we took Abby as part of her birthday present. My transplant has clearly made me wussier when it comes to water as yet again I spent a rather long time edging myself into the pool. We did several lengths, then I raced my mother (and won. again. Ha) and then she decided it would be a bright idea to try running through the water as this would be harder work therefore better fitness training. The result was neither pretty nor highly successful. It probably made for amusing viewing though. A few more lengths later, and I decided to call it a day. Definitely more swimming done than last time, big yay for that!

Glossary

2007-05-30T16:57:00.001+01:00

FVC: This stands for Forced Vital Capacity. It measures the amount of air you can blow out in total from your lungs. Today (30.5.07) mine stood at 2.23 which is approximately 60% of predicted for my height and age I reckon.
FEV1: This stands for Forced Expiratory Volume, the one representing one second. It measures how much of your FVC you blow out in the first second, therefore indicating how strong/elastic your lungs are. Mine is currently about 1.81 which again is about 60%. The FEV1 is always lower than the FVC.
Sats: This is shorthand for oxygen saturations. The average healthy persons sats will hover between 98-100% although anything above 95% is fairly normal. Below 95% indicates problems. If sats drop below 90% it is customary for oxygen to be used. Sats should not be dropping below 85% if possible.
WBC: This stands for white blood cells. This count is measured on routine blood tests to keep an eye on potential infection. Normal WBC count is anything below 10.
CRP: This stands for C-reactive protein. CRPs are another blood test result, these are inflammatory markers, again raised levels are a sign of infection. Normal is below 5. Mine may or may not have climaxed at 500 before. (oops).
BP: Blood pressure.

sponge legs

2007-05-30T16:52:00.001+01:00

FVC: 2.23 FEV1 1.81

Treadmill: 18 mins
Bike: 4 mins
Cross Trainer: 3 mins
All weights completed.

Ohmygoodness I am so not naturally sporty! Neither is my brain it seems, as I jumped expectantly into the car, sped off to the gym...and realised I had not brought my gym bag with me. I had however remembered to bring my handbag which was of no use whatsoever and would get in the way prompting me to hide it in the car. I rang my mother to tell her and she errupted into gales of laughter. Supportive.

It is fantastic because I am now no longer out of puff merely from glancing at the equipment, but my legs are like pieces of sponge. The treadmill is definitely my favourite but something tells me I shouldn't just stick to that as I wont develop other muscles (no one professional is telling me that, that is my guess). The bike just kills my legs after about 2 minutes, but at least I managed a minute longer this time than last week. And did a great deal longer on the treadmill so yay!

Lung func staying ok, Harefield tomorrow so we shall see what they have to say about this persistant wheezing which keeps cropping up...oh and I am going to do a glossary post (idea nicked from Oli's blog) to explain these funny numbers I relay in various blogs and posts!

Training of sorts.

2007-05-29T15:32:00.000+01:00

Current Lung Function: FVC 2.37 FEV1 2.09

Saturday counts as a training day to me as I went to Thorpe Park. For those who have been (or been to any Theme park) the place is huge, and since I stopped using the wheelchair completely about a month ago now, I decided to try the whole thing on foot. We arived around 9am and were padding round all day till 5! I also suspect the amount of screaming I did on certain rides was good for strengthening the lungs.

It was hard work, and I had to sit down for breaks at quite a few intervals, but generally I felt really good afterwards (after a long sleep that is). Unfortunately neither Sarah or myself brought the pedometer so I don't know exactly how far I walked. Am guessing it was quite good training though! 2nd gym induction tomorrow, we shall see how it goes...

Angels take flight!

2007-05-24T22:59:00.000+01:00

Now I have posted my long and official type blog I can start waffling for real, woohoo!

Today I joined my local gym! This really was the most bizarre experience, I feel totally out of place amongst the lycra-clad lean bodies pounding along on the treadmill, but wore my nice pink jogging bottoms and a vaguely sporty looking vest top, and grasping my gym bag (purchased by my mother) tried to saunter nonchalantly in as if it were totally normal and acceptable for me to be there.

The man who did my induction was lovely. I may have scared him somewhat when actually confessing that my "small op" was a double lung transplant. I did however reassure him that I was safe to start gentle gym exercise and that I would double check again with my team and get a confirming letter. I have been walking half hour walks for a while now so I want to do a bit more, and I would like to work on my muscle strength which is quite frankly currently that of the pilsbury dough boy.

I was introduced to many daunting and formidable looking machines and attempted them one by one. I struggled greatly on the first two (bike and cross trainer) which was quite dispiriting, however once I got onto the treadmill I found a comfortable stride and was able to maintain it for 5 minutes (woo!) Bearing in mind in February I could not lift my own head, let alone walk, I feel this wasn't too bad a start.

I also learned what all the weight machines (which looked to me like complicated methods of torture) do and how to work them (I shall be asking for assistance next time I encounter them I'm sure.) After an hour wandering round and trying everything out, I left feeling slighty more confident and pretty determined to get stuck into this. Today revealed I have an AWFUL lot of work to do, I struggled with 3 minutes on the bike, but that is what challenges are for, so I should stop worrying about it and get going! Next session is wednesday, also with a trainer's guidance. Pink trainers check, sporty type water bottle check, bring it on....

Why you should sponsor...

2007-05-24T22:54:00.000+01:00

Welcome to the Hydro Active 2007! Before I start blogging I am going to attempt to explain things to new(er) readers. Even though I suspect the majority of you know lots about me (in fact possibly more than I do in some cases) I am going to start from scratch…

So first of all, why the CF Trust?

Cystic Fibrosis is the UK’s most common, genetically inherited, life threatening disease. It affects around 7500 people in the UK. CF causes an overly thick and sticky mucus to be produced, which interferes with the digestive system and damages the lungs. Predominantly due to the latter affect, the average life expectancy 31 years old.

There’s the sciencey bit, now what about how it affects me. I was diagnosed with CF at birth. I had what I would consider a very normal childhood; I had the strict daily regime of inhalers, antibiotics, enzymes, vitamins, steroids, nebulisers and physiotherapy but as it was all I had ever known I never really thought much of it.

As I grew older, inevitably Cystic Fibrosis began to affect me more and more. Admissions to hospital for intravenous antibiotics increased to combat the ever more present chest infections, but socially I continued to thrive in my own over excited melodramatic way.

The teenage years approached. I wore lots of black, (I did honestly), fought with my parents, did everything a normal teenager is supposed to, but in the background there was always the underlying and continuous readmissions to hospital, which to me merely meant a readjustment of my social schedule, for example to invite all my friends up on the train to come and get a takeaway and squash into my hospital room to watch a film. As I got to know the nurses better, we got into little routines. Monday night became takeaway night, the dinner man got to know my favourite dishes and the number of salt and pepper sachets I would take off by heart, and hospital didn’t seem alien or scary, just a parallel segment of my life I would occasionally slip into, feeling slightly lost whenever I would have to return to the real world and discover everyone else had moved on 3 weeks without me.

A levels flew by, and University loomed. By sheer fluke (and extremely good luck) I selected Bristol, which had the best CF centre imaginable. I was cared for magnificently and the team worked overtime to guide me through life on my own, which created many more obstacles (such as the lack of a carer when unwell) but also so many possibilities and wonderful experiences that it was worth it a million times over. I threw myself into my studies, and even more fervently into my social life. Time passed, my lungs worsened. I commenced overnight oxygen and was presented with a formidable machine which concentrated oxygen out of the air and pumped it out through nasal cannulae which smelled strange and felt weird on my ears. I decided I would not be intimidated by this large and noisy machine and named it Claire, after a girl I once met who was incredibly loud and somewhat annoying.

During one fairly regular hospital admission, after several weeks of IVs which weren’t really denting my breathlessness, my consultant quietly asked if anyone had ever spoken to me about transplant. I muttered in a somewhat nonchalant manner that yes of course I had heard of them, that’s what really ill people have. It was only later that night my mind began to wander and it suddenly occurred to me that he may actually mean in reference to me.

Several months of ups and downs later, I was referred to Harefield for a transplant assessment. I was told that a transplant may bring me a better quality and extension on life. That 50% people post transplant reach 5 years. That without one I probably had about a year left. I joined the waiting list.

Nearly two years later, after several severe collapsed lungs, a few near misses which had my family rushed to my bedside, and an acute feeling all round that we were running out of time, I received that call that I had been hoping and waiting for.

I love my life. I am incredibly grateful for what I have got, what I have had, and what lies ahead of me. But that doesn’t change the fact that Cystic Fibrosis will mean that my life is considerably shortened. And for far too many of my friends, it has already claimed their lives.

Three young people die of CF every week. I now have a second chance, some precious years, which many never got. But what I want is for children born today not to face this difficult uncertain future. I want a cure. I want treatments to improve. I want support such as things like the Joseph Levy Memorial Fund which is part of the CF Trust and which saw me through my toughest financial times at University to go on supporting people with CF who are trying to live their lives.

This is why I am walking in aid of the CF Trust. Please give whatever you can.

Thank you.

6 days on...

2006-09-09T11:08:00.000+01:00

I can't believe almost a week has past since the Hydro Active. I had the most amazing day, and am incredibly proud of my lungs, as I achieved more than I thought possible. Needless to say I used up probably a weeks worth of energy or more, so I have spent most of this week in bed recuperating and under strict instruction from my team done no exercise since (I think they are afraid that I am about to make this a regular occurrence, they really need not worry!) They were quite astonished that I managed 500metres, and I don’t think they can make up their mind whether to be impressed or whether to tell me off so I don’t do it again! Apparently they expected me to walk 100metres, which being a somewhat naughty sort makes me even more proud of my achievement.

I felt amazing afterwards I really did, therefore was slightly surprised that Tuesday’s X-ray showed my airleak had increased and my lung had deflated again. Hopefully this is only a slight setback, but it does mean that I am not heading home for a while yet, and am under careful observation once more. It just goes to show you what the combination of adrenalin, determination, and most importantly love and support can do for you.

I will continue to give updates as to my general life and health on my other blog, found at http://www.pinkandsmiley.blogspot.com/ but apart from posting when I have a final total (we are over £12 000 now!!) this blog will become inactive. The training is over, this particular challenge is finished, but I have much much more living to do…

Every penny counts: www.justgiving.com/emilysangels

Photos!

2006-09-04T12:23:00.000+01:00

I have posted some photos of the days events on my other blog, click here to see them!

Edit: There is also a slideshow viewable by clicking here

We are still collecting sponsorship so please if you want to send this blog address to anyone that might be inspired to sponsor, feel free! You can sponsor us at www.justgiving.com/emilysangels

Thank you again everyone for your support.

The big day itself.

2006-09-03T19:24:00.000+01:00

Adjectives and formal English vocabulary fail me right now so I shall start by using a phrase invented by my mother and saying I am currently Smilier than Mr Smiley of Smileyland. I am back safe and sound in the hospital, glowing with happiness after what has been an incredibly exciting day.

Being aware that I had a big day coming up, I settled down nicely last night, ensuring I had done extra physio and an extra nebuliser, and had everything within arms reach so I was sorted for a good nights sleep. Being completely prepared like this is a rookie mistake, it actually ensures you will not get to sleep at a nice early hour because you have something important the next day, a bit like if you know you have a big interview coming up so you don’t want bags under your eyes and are still frowning about that at 3am whilst watching the clock. Luckily I wasn’t as bad as that, but my lungs did throw a mini strop last night by being considerably achey and then deciding to bleed to make me sit up and take notice that they were in fact still in charge. I spoke to the on call doctor who gave me a quick assessment and verified that whilst we will keep an eye on the bleeding it wouldn’t hamper today’s proceedings.

This morning I was nervous, I really was. More that my body would let me down and I would miss out on stuff – once I run out of energy (generally much sooner than anticipated due to over excitement and silly behaviour) I have to stop, there is absolutely no choice in the matter, as if I try to carry on past that I do just fall asleep. I got up early to fit in all my morning tablets, physio, nebulisers and inhalers (and eat a bowl of porridge, check me out carbo loading as if I am some kind of real athlete) and then lay back down to recuperate. The troops (family) arrived at 8.45 to help with the important part, donning the costume, yay!

As we approached the park, my nerves began to subside, as it became clear my lungs felt they might actually enjoy today and so seemed to be cooperating nicely, probably out of nosiness rather than anything. Due to having an acute fear of running out of oxygen I had in fact accumulated the cylinder rations for the south east of England and put them in my car, perhaps overdoing it a bit but better be safe than sorry. We all met at the CF stand and the air was electric as everyone picked up and donned their pink sparkly wings, people gathering from all over the UK to form Emily’s Angels, so many meeting for the first time.

I did incredibly well (if I do say so myself) at adhering to the strict “no talking” rule. OK so it wasn’t no talking, but I did talk considerably less than normal and sat very still most of the time, so by the time we got to the start line and actually set off, my respiration rate was still nice and slow and my muscles were hardly aching at all. The walk round was just lovely. It was cloudy at first, but as we set off the first signs of sunshine were beginning to break through. People were chatting merrily, my mother (who is even more excitable than me) louder than most started pushing the wheelchair with great enthusiasm however appeared to loose interest shortly after the start line and left me in the hands of other pushers for the rest of the race (thanks guys!). we had a nice rota going with people switching duties with wheelchair and huge O2 cylinder on a trolley, but the recently betrothed Mrs W and Abby did vast amounts of pushing, thank you both and all the other helpers.

I absolutely loved the entire thing, I was able to just sit there looking around at this huge multicoloured stream of humanity pouring round the corners of hyde park. Sponsored walks and runs exhibit human spirit at its best – people are driven by passion and by love, and the supporters round the edge are a huge part of it as they encourage cheer and clap throughout. We got a tad carried away in the enjoyment of it all and slowed to a bit of a saunter at one point but sped up again around the 3K mark and headed quickly towards and past 4K. As we past this mark, I felt the nerves begin to build again, I was desperate that once I got out of the wheelchair I would be able to walk from then to the finish, I really didn’t want to have to sit back down again, but was well aware I might have to. Suddenly I heard my name being called, and it was my two personal trainers (also known as my physios who had the task of getting me from “breathless at sitting” in July to “walking outdoors” today, not to mention the more formidable task of getting me to stop talking when walking) were there, they had calculated back from the finish and found a point which they estimated was just over 500 metres away, and they thought I could make it.

This was it, it was now or never, and I was definitely nervous. I had managed to walk about 400 metres in total on the corridors, but that often had breaks in, and so I had no idea if I would be able to do it. Fantastically, the watertight security had a nice open patch right next to the track so said trainers came down and walked with me, keeping a tight eye on my breathlessness score (signed on fingers, 1= not breathless at all, 10=so out of puff I sound like Thomas the Tank Engine and probably would not be standing at the time). The deal was to try and stick between 3 and 4 and that if I hit 5 I should take a break, which obviously in my head I moved up to 6 pretending I couldn’t quite count properly. I set off at a cautious pace, but was waving a bit too much which sensible people around me quickly put a stop to. After that I concentrated on breathing and walking and found myself moving steadily but quite comfortably round the corner of the track, and suddenly the finish line came into view.

I was trying hard to purse my lips as talk, but you try pursing your lips when your heart is dancing with joy so much you cannot help but break into a smile. I kept at a steady pace, I hit 5 about once breathlessness-wise but slowed a little and moved back down to a comfortable 4, and most importantly kept on moving. There were a lot of people shouting for us by this point, and whilst it was a bit of a blur I could see face after face of people who I knew and loved. Suddenly I could hear my voice on the tannoy, and the announcer was telling the crowds who I was (apparently I am waiting for a ‘double transplant’, not satisfied with one clearly) and why I was doing this. People were cheering and shouting, my Angels were all around and I was enjoying every single step.

As I approached the line my mind went sharply back suddenly to a very specific memory; I was in high dependency, so it must have been just over 4 weeks ago, and I had just got out of bed to sit on my chair for breakfast, and I couldn’t catch my breath. I was so breathless the nurse was sitting next to me talking to me trying to bring my heart rate down, and I remember having tears in my eyes, watching the chest drain bubble viciously as the air leaked from my colander-like lung, thinking if I can’t even leave the bed now I would never make it to Hyde park. There is nothing like meeting a target to mend your spirit and booster your confidence and I focused on the white line on the floor getting nearer and nearer. Having trained hoping to do 400 metres, approximately 530 metres after leaving the wheelchair I stepped over the white line. As I did so a cheer went up and I couldn’t help the tears escaping. I had done it. I hadn’t died from that lung collapse, I didn’t still have a chest drain in, I wasn’t stuck in hospital, I am alive, and I was outside, and I was stepping over a finish line of a sponsored walk. As I stood their getting my breath back, I noticed a CF Trust balloon go up in the air. It felt suitably fitting, because as well as doing this challenge for myself, and for people with CF, I was doing this for those we have lost to CF; for Gaz, for Chloe, for Kirsty, Amanda, Stacey, Sofia, and so many more.

We head back to the CF Trust stand to sit and chill with food and drink, and also give people a chance to mingle a bit and me a chance to grab and thank as many people as I could for their incredible contribution and support, how many lucky girls out there can claim they have 70 Angels helping them complete a challenge?! The adrenalin kept me going and my lungs decided I deserved a bit of mingling time too, so I was able to chatter away quite merrily and had a wonderful afternoon. It is only once I got back to the hospital and lay on the bed that I felt absolutely exhausted, but that is perfect and just how it should be, I now have my mask on and can lie here and relax, having had one of the most memorable and enjoyable days of my life.

Oh crumbs, this entry is so long I am not sure that blogger will actually let me publish it, it may spit it out in contempt. I will post some photos on here as soon as I can; a big thank you to each and every person who has supported me along the way, both from afar or here today in person.

www.justgiving.com/emilysangels

Final test run

2006-09-01T11:37:00.000+01:00

Today I decided (with much encouragement from my physio who I think just wanted a good laugh) to don the entire outfit which consists of: A cerise coloured fairydress, pale pink sparkly wings, hot pink tights, hot pink legwarmers, a hot pink wand, and trainers with hot pink markings and laces - and go for a test walk fully costumed!

I was pretty nervous and the typical symptoms of over excitement set in, freezing cold hands and feet, my heart rate up nice and high over 130 somewhere, and breathless before I had even started, but this is why it was so good to have a trial run, as things calmed down as I got more used to walking around with my huge array of pinkness on!

We walked slowly up and down the corridor, I was clutching a sponsorship form and sparkly pink pen and managed to gather another £60 of sponsorship en route which is fantastic! I also walked outside for the first time in 6 weeks; it is very different walking outside rather than indoors, and whilst it wasn't that much harder it was slightly more tiring.

The only thing I am slightly concerned about is I was absolutely exhausted after the training session. I desperately want to have some energy left post race so I can talk to people and thank people for all the amazing effort and support they have put in, but I may have to go straight to sleep if that is what my body is telling me to do. We shall see. But all in all I am very excited and confident that I have prepared for this as much as I possibly can. Tomorrow I will be going for very short walks only (just to stretch my legs and open up my lungs a bit) so this is it....come on Sunday I am ready!!

Best walk so far!

2006-08-30T19:08:00.000+01:00

I have had a wonderful day and am feeling incredibly positive, not only have I managed to escape home several times in the last couple of days but today I had my most successful training session so far. I walked all the way down the entire length of the ward without stopping (first time since this huge episode) and I really began to think I might actually be able to walk this last bit across the finish line.

I know with the excitement of the day and the difference of being outdoors not in a controlled environment it will be harder, but I think that I can walk a distance that I will be proud of, and even if I dont do as well on the day as I wanted to I can be proud in the knowledge that I have trained and worked to the best of my ability.

6 weeks ago exactly my lung collapsed, 2 days later I was intensive care. When I left intensive care I was unable to get out of bed without becoming frantically out of breath, and today I was striding along a corridor practically dragging the physio along (well slight exaduration but it felt like it!)

Bring on Sunday, I am determined to enjoy every minute of it, because I am very lucky to be here with the possibility of participating and because many many wonderful people are coming together to help me raise as much as I can for the CF Trust.

These shoes were made for walking....

2006-08-23T22:31:00.000+01:00

On my other blog (see the menu on the right) I have waffled on and on about shoe selection so I shall try and keep most of this to exercise!

I have increased my training sessions from 1X daily to 2Xdaily as of today, and the first attempt went really well. I was obviously having a good day too, as my heartrate didn't rocket or anything, although this may have been due to me talking a bit less and concentrating on breathing a bit more.

We still haven't worked out the length of the ward (attempting to discuss it today with two physios who are incidentally also female was most amusing as we came to the conclusion after much serious debate that actually none of us had the faintest idea) but I do know that I am increasing in stamina a tiny bit from little signs, such as heartrate and speed of walking. I need to sit down at about 30 yard intervals I think, but seeing as I will have the wheelchair right next to me this shouldn't be a problem.

Only 11 days to go now and I am getting excited but also a tad nervous. I am not quite sure how well my body will cope with all the excitement (I am not very good at sitting still and being quiet, ask anyone who has ever met me) but we have now raised over £6500 which is a staggering amount and all the more inspiring to get there and get across that line!

www.justgiving.com/emilysangels

Highs and Lows

2006-08-20T13:32:00.000+01:00

As I knew all along, my training regime is definitely not a stable nor ordinary one! One day I will be able to do the entire length of the ward in a comical manner (with high knee kicks and all sorts) and the next I will be breathless after 1/4 of the distance. But still variety is the spice of life, and of course that does mean if I have a bad training day, I know there is every possibility the next day will be far more successful. I had quite a painful drain in from Friday to Saturday which I thought would interrupt training somewhat, but then to my surprise on Friday afternoon I managed the entire length of the ward again, after only managing 1/2 the day before! This was fantastic as it helped me accept the pain more because the drain was obviously doing its job and allowing the lung to inflate more fully.

Sadly my lung decided that it didn't want that drain in thank you very much, and quite literally pushed it out yesterday. So today I am back to feeling that dull pressure on my lung, which isn't painful, it just makes me breathless a lot quicker, so I have done less exercise today. I marched (my idea of marching may vary from yours both in speed and height of leg raising!) on the spot for 2 mins this afternoon, and will hopefully do another walk later. Every little bit helps though, and I am staying positive that on the day of the challenge it will be a good day and I will be able to walk my furthest distance yet!

Training again!

2006-08-15T15:40:00.000+01:00

Today was a fantastic boost for my morale as I walked the entire length of the ward with the phsyio! I am thrilled as it makes September 3rd seem all the more achievable. As always I wrote more detail in my other blog but thought I should update this one as it is training!

My physio is being really encouraging, and we are trying to work out a way to measure my progress, perhaps by secretly sticking stars at various intervals along the corridor or something so I can track how far I am walking each time.

YAY for training, come on September 3rd!

Rehabilitation.

2006-08-14T13:18:00.000+01:00

After a very up and down few weeks, where I have gone as low as it is possible to go and still survive, and then shot upwards improving at an astonishing rate, I moved out of the High Dependancy Unit (for the second time!) and back to the CF ward yesterday. The chest drain is out (woohoo!) and things are definitely looking more stable (she says touching all the wood in the vicinity) and so I have been talking to the doctors and physios about setting up a programme to help me get my strength back.

Essentially my poor little lung muscles are exhausted, similar to how ones leg muscles must feel after completing a marathon or something I suspect, when they just seize up and refuse to function nicely. Plus being tied to the bed because of the suction pump and chest drain has resulted in significant muscle loss in my legs, which were really rather scrawny anyway! So the physio is coming back this afternoon to help me work out a plan of exercises to do, which I intend to get cracking on straight away, so I can start working my way back to some sort of normal strength.

I am determined to be there on September 3rd, but obviously it would be even nicer if I could actually walk some of the distance as well. I had worked so hard and managed to get myself up to quite a good distance, but need to start again now as at present moving from the bed to the chair leaves me breathless.

The fantastic thing is that this challenge really gives me something to aim towards and so I will hopefully attack my rehabilitation and exercise with more gusto (does anyone say gusto anymore?!). I always work better with a target in sight, and the thought of getting across that finish line with all those wonderful Angels who have given up their time and energy to be there, not to mention the hundreds of people who have sponored us, is more than enough inspiration!

Minor setback

2006-08-01T16:53:00.000+01:00

Well perhaps not so minor, but am determined that it will only be minor in the long run! On Wednesday the 19th I suffered a pneumothorax (collapsed lung) on the right side, and then a further two in the following 24 hours, putting me in a critical state in intensive care for a short period. My rather small body has yet again proven to be stronger than anyone could have hoped and I am now fighting back hard, and was back on the exercise bike 24 hours after moving out of intensive care.

I have no reserve capacity on my lungs, so I know how vital it is that I cherish each and every bit I have by exercising and medicating them as much as I can to preserve my lung function. I still have a chest drain in as my lung hasn't mended yet, but we are taking each day as it comes and each day there is notable progress, with my amazing family and my hospital giving 100% support. A much more full account of my escapades can be seen on my other blog, by clicking here.

On a much more bright note, we now have over £4300 worth of sponsorship so a huge THANK YOU to every single person who has donated. I have also been named fundraiser of the month by Justgiving, which is a lovely gesture, so a big well done and hurah to the whole team, come on Emily's Angels, we are going to do this and raise loads of money and I am going to walk over that damn finish line chest drain or no chest drain!

Long time no post!

2006-07-12T18:52:00.000+01:00

Ooops, sorry for the huge lack of posting on this blog, hopefully those who follow my main blog will know that it is because I have been out and about doing an awful lot of living, so for good reasons!

It has taken me some time to get back to strength from my last infection, but I am gradually getting less breathless and able to do more. when I first came out of hospital I was extremely breathless moving from one room to the next, but now I am much more mobile, which in turn will help strengthen my lungs further, hurrah! My physio came yesterday and checked my lung function and oxygen saturations, both of which are fine and stable. I am building up again on the walking front, and itching to get back to my good old wanders down the road.

It is National Transplant Week this week, and excitingly Emma and I were invited to the launch at the House of Lords, where I did a speech (which Emma was forced to contribute to due to my lungs not liking the idea of talking solidly for 10 minutes).

We have also been on various news items both on TV and radio round the country, so a busy week, but a good one. Whilst talking is infact like training, as it leaves me very tired (although some may dispute whether that is due to poorly lungs or the sheer volume of chat) I think it is really time that I got my training back on track, so will be dragging my sister down the road with me once more in the very near future - watch this space!

Photo 1: Sue Saville interviewing us for ITV news.

Photo 2: Me and my "I'm serious here" face and excessive gesturing.

On first attempt at publishing this blog I appear to have got far too over excited and published it three times, perhaps subconsciously trying to make up for the long gaps between updates. Hopefully it's correct now!

Hospital and pursed lips.

2006-06-18T00:27:00.000+01:00

After managing to survive my hectic week with astonishing poise and style, my lungs then decided that they had been big and brave a bit too much recently, and at the slightest hint of humid and muggy weather, promptly threw in the towel and had a big strop. This resulted me being carted into hospital on Thursday, as I couldn't really do much except lie down and puff at people, so came in for some rest, Intravenous (IV) Antibiotics, and general TLC. Struggling to breathe even when my O2 mask was on, and I was lying still wasn't a particularly nice feeling so I was relieved to be admitted.

In an almost apologetic manner my little lungs have made a remarkably swift recovery, and I am almost well enough to continue the IV treatment at home (yay!). Obviously training has gone completely to pot, however I take full advantage of the physios when I am in, and request twice daily visits, and go for walks with them as often as they will take me (not sure whether that makes me a model patient or an annoying one!). So I have been doing daily walks, twice daily when I can, just up and down the corridor, at first about 20 ft then sitting down to catch my breath, and gradually building it up from there. My physio taught me a fantastic technique yesterday where you purse your lips as you breathe out whilst walking, it cuts down on the air trapping which my lungs are renound for and in turn increases the length of time before I am completely out of puff. The only drawback (for me) is that I can no longer talk when walking. Not that I am supposed to anyway, as the physio always tells me off for doing so, probably to give her ears a break more than anything else!

I think the most frustrating thing about these exacurbations in relation to training is that you go back to square one, and have to build up from the bottom - where the out of breath stage is merely putting on the shoes to go walking - all over again. However I am already moving forwards again, and hey, no one ever said this was going to be easy...wouldn't be called a challenge really then would it?!

A hectic week!

2006-06-07T09:02:00.000+01:00

Last week was one of the busiest weeks in the history of mankind - well it was for me anyway! I managed to do so much I really cant believe how well my tiny lungs behaved, and I am incredibly proud of them.

I have been into london, bollywood danced, eaten large meals, been to a night club (first ever time since starting to use oxygen a year ago!) been on a minibreak, to the theatre and to my sisters 16th! I reckon that's enough to make anyone need a week in bed!

In between each activity I put my mask on and went straight to sleep, which is one of the reasons I think I was able to participate in so much, so needless to say there was no training done. However I thought I would post a pic or two of my exploits to show that really I have been doing a great deal of exercise which probably counteracts the lack of actual training!

As for news on the challenge itself, we now have a team of over 60 Angels and have now passed the £2000 mark which is just fantastic! But even more exciting for me than that (sadly) is the fact that I found an adult sized bright pink fairydress which I immediately purchased because let's face it, it isnt every day you see one of those for sale. So I will be donned in a floaty dress with fushia netting and sequins....come on September!!

Pic 1 - supposed to be bollywood dancing but I appear to be laughing more than anything...

Pic 2 - climbing a large rock, before we noticed the sign that said "do not climb on the rocks". Oops. Excuse technological incompitence which is why I appear to be lying sideways as I cannot work out how to turn the photo round!

Finding the balance

2006-05-25T16:21:00.000+01:00

I have been rather bad and not had a proper training session since last Tuesday. This is for a variety of reasons. Life with a mouse-sized lung function is all about compromise. Actually, I suspect life is all about compromise wherever and whoever you are, but I digress. You have to learn to plan ahead, and to calculate "amount of energy spent" for each activity (bearing in mind getting dressed counts as a physical activity) and then work out if you have enough to do everything you want to do, and if not, something has to go.

Last week was a tough week emotionally as I wrote about in my other blog, and being the slightly emotional person I am it involved some tears, which seem to affect my body much like a day at the athletics track should. I also need to ensure I am well for this forthcoming weekend, as it is the hen weekend of a rather amazing friend, and I am extremely over excited and want to be there for as much of it as I can.

So as a result, the training has been bumped. I have had to wear my mask quite a lot over the last week or so just to alleviate breathlessness at rest, so it's probably a good thing that I am not striding about the town at present! I am thoroughly looking forward to restarting after next week, and am really motivated by reading how other team members are doing with their training, I will hopefully add them as weblinks along the side of this page. Please please dont forget to sponsor us (click here to do so now!) the promise of muchly fundraising is after all how I have persuaded over 50 ladies to don pink and sparkly wings in the middle of Hyde park!

Training resumed

2006-05-16T15:22:00.000+01:00

After a thorough resting period (surprisingly well behaved for me!) I resumed training this afternoon. My physio came from the hospital to do a check on how I am keeping and to assess me when walking.

Needless to say she was spot on about needing to use the mask - I felt so much better using it, and was able to walk at a faster pace, plus I felt less shakey afterwards. It also enabled me to walk and talk, although my physio did tell me on several occasions to concentrate on breathing (though this might have simply been to give her ears a rest from my incessant chattering!)

The walk went well, my physio was pleased with how well my oxygen saturations stayed up, and I was thrilled with the pace I was able to keep with my mask on. So it is a big YAY all round.
I am hoping to resume twice weekly training and now I am using my mask, will gently increase the distance as well.

We now haveY over 50 angels which is absolutely fantastic! We have also passed the £1000 mark which is just incredible in such a short space of time. I am over the moon, but it simply makes me want to raise even more money! I am just so excited about the thought of being able to walk across that finish line.

Pause in training.

2006-05-10T10:57:00.000+01:00

Technically yesterday should have been one of my training days, but am feeling a little under the weather so being sensible (first time for everything) and taking it easy.

My lungs are ok but my heart rate is dancing around at a phenomenal speed, therefore I thought pushing myself probably wasnt a good plan last night. I went to watch a friends play, which involved a limited amount of walking, so that will do for Tuesday's session. Plus Saturday's mountain climbing was an extra session, and I knew that I would have to be flexible and inconsistent in my training so I am trying not to feel annoyed at having to miss it.

It is frustrating, as I am a rather overexcitable 22 year old with 100 year old lungs (one lung function test gave me the reading of "lung age: over 100 years" - charming!) so really would like to just bounce up and down the road in a repetitive and child-like manner. Not only would my lungs not tolerate that, I think my family would disown me, so I shall be calm and well behaved instead!

Edit - I just phoned my physio to have a chat, and told her I may or may not have got a bit overexcited on Saturday and done two flights of stairs, to which she howled with laughter, before confirming that yes, that may indeed be why I am currently feeling a little bit under the weather. She explained that stairs is one of the tougher cardiovascular exercises (they use it as a recovery assessment post transplant) and so she is extremely impressed that I managed it and not at all surprised that my body is somewhat cross with me. I have been instructed to take it easy till next tuesday, when she is coming here and we will go for a walk together.

She also thinks I should use the mask when exercising, which in all honesty I am really not very happy about as I have never worn my oxygen mask in public before. It makes me look like Darth Vader, I might scare small children. Nevermind. But it is just another hurdle really, and I am sure once I have been out once wearing it I will be fine.

Stairs! YAY!

2006-05-08T15:09:00.000+01:00

Not strictly part of my training regime, but on Saturday I went to visit some friends who live in a flat which is up 2 flights of stairs.

Last time I went, I was carried, which I did rather enjoy, but I decided this time that I wanted to give the stairs a shot myself. So with my lovely friend carrying my O2, I walked (albeit extremely slowly!) up one flight of stairs, stopped for a slightly lengthy breather, then walked up the second.

It sounds small, it took about 10 minutes, but I cant really express how damn chuffed I feel. I wanted to run around punching the air and cheering, but was rather tired!! Not feeling any real ill affects except for quite a bit of chest pain today, but I get chest pain regularly and it isnt anything some painkillers cant fix...

Proof my training is working, and that excercise is beneficial! YAY!

Session no.4

2006-05-05T17:12:00.000+01:00

It is a friday, the sun is shining, and it is just generally glorious outside. So perfect weather for training session number 4!

Because of the lovely weather, there were a few more people out and about, in their front gardens etc, which was a little bit nervewracking. I am a bit self concious walking about as I am a)slow b)wearing tubes up my nose and c) sound somewhat like a steamtrain in labour, however I would only advise someone else to stride on by and hold their head high so I did the same. And of course naturally no one noticed and/or cared.

We walked the entire length of the road and back, and I didnt pause once, although I did have to slow right down half way as I was becoming more and more breathless and really didnt want to have to stop altogether. As it is so gorgeous out we decided to push it that little bit further and walk on a bit further before turning back. At this point I did have to move my O2 up to 4 litres, but that is fine, as it enabled me to finish the walk a lot more comfortably and meant I didnt stop once! YAY!!

So once again a success, really do love this walking malarky, I just wish I could walk further as then it would last longer. Think I will start driving to a park and walking there so I can sit down and relax in the sunshine midway.

photo - coughing which ensued after photo two in the previous post. Laughter makes great physiotherapy!

3rd walk and photoness.

2006-05-02T17:09:00.000+01:00

Yay!

Been for my 3rd walk today, up and down my road again with my sister being my ever faithful assistant. This one was probably actually more physically demanding as a) Abs was also acting as official photographer (looking more like creepy stalker who instead of helping poor girl with oxygen ran behind taking photos) and b) we kept laughing as every time the camera was produced I developed a kind of tin man walk. Hmm. Hopefully have managed to put up some pics of me in action.

Anyway after much hilarity and a 3rd party
taking some of the last snaps, we got back indoors. I felt good whilst walking, my lungs were doing really well today, but afterwards I did feel rather dizzy and had a bit of chest pain. Hey ho, I put that down to the laughter rather than anything else!

The team is now up to over 40 members which is FANTASTIC. We are looking at purchasing pink and sparkly wings for all members to link us together - I have a feeling I have already posted about this but as you can see its one of the elements at the forefront of my mind!

photo1: Not posed at all then...

photo2: Laughing and walking, what a multitasker!

Sponsorship and ice cream rewards

2006-04-29T09:35:00.000+01:00

The justgiving page which allows people to sponsor us online went up a couple of days ago and thanks to wonderful support and generosity we are already up to £270! Yay!

Inspired by people jumping to sponsor us so early on, I went for my second big walk yesterday. It was slightly longer than Tuesdays, as I walked down my parents road and back. I think I was having a less good day as well, as I found it much tougher. My heart rate went well over 170 and so as I have previously been instructed to do, I paused to allow it to sink back down to human levels!

As we made our way back down the road, an Ice Cream van pulled up, music blaring away. Abs decided that an ice cream reward was in order so we purchased one each and for the parents, which bought me yet another recovery period as we deliberated, chose and paid, and then made our way back to the house.

So training session number 2 - a success, but much harder. Was left feeling more breathless and more tired, but as with everything with CF there are good days and bad days, so training session number 3 will definitely be a good day, I can feel it!

We are now sponsorable!

2006-04-27T12:10:00.000+01:00

Yay!

Due to getting far too over excited I already have the justgiving page up and running. This means people can sponsor us online, which makes it a lot easier, so please take a look!

I have named the team "Emily's Angels" - I wish I could take credit for the name but I cant (well done Fi) but they are absolute Angels doing this and I am really looking forward to it!

So please please take a look at our page and sponsor us if you can! www.justgiving.com/emilysangels

Let the training begin

2006-04-25T17:56:00.000+01:00

Two posts on the first day, I am fairly sure that this will be a one off!

Today I decided to test the water and go for a little walk. It may sound strange, but I hardly ever walk any kind of distance. Walking is extremely tiring, lugging a heavy O2 cylinder with me doesnt help, and so to allow me to live my life and do as much as I can, I use the wheelchair for any considerable distance.

I asked my sister to come round after school to be my oxygen bearer, and we set off for a gentle saunter down the road. Having someone else to carry my oxygen, I didnt find it too bad. I set off too fast to begin with (as I always do, it's impatience I think) and had to slow right down, but after a while found a comfortable pace, and managed to walk all the way down the close and back! WOOHOO!

I actually really enjoyed it, I havent gone for a walk in well over a year. Actually one of the things I am most looking forward to after my transplant is leaving the house, with just my keys in my pocket, and setting off down the road. No oxygen cylinder, no mobile phone, no one to assist me, just going for a walk. I cant explain how alien the idea is at present, and itwill be a very surreal and probably emotional experience, but I cant wait.

Back to the present...my aim is to gradually build up the distance I can walk, and I am very aware that this will be a repetative exercise, as every time I have a chest infection I will be back to square one. But today was great so yay for a good start!

The challenge!

2006-04-25T17:04:00.000+01:00

On 3rd September the women's hydro active challenge - a 5 kilometer run (walk or wheel!) - will take place in Hyde Park.

Last year, my good friend Sarah got her act together and rallied the troops to run for the CF Trust. My mum and sister were amongst those running so I went along for moral support, and had the most fantastic day. The atmosphere was wonderful, everyone cheering and encouraging the runners, I shouted as loudly as I could, which was a strange experience as I still had my chest drain resulting in most of the air escaping out of my side rather than past my vocal chords!

Anyway! Inspired by last years efforts, I decided I want to join in this year! I will be in good old denzel (my wheelchair, so named because there arent enough denzels in the world) and be waving merrily to everyone as I am pushed round the track by some poor soul.

However I decided that I need to make a bit more effort than that in order to justify sponsorship, so after speaking to my doctors and physios, I have decided to train, and hopefully, if health allows it, I shall walk the final part of the course. I will have someone pushing the wheelchair nearby with someone carrying my oxygen walking along side me.

I feel that this is a good idea for a number of reasons but mainly the following two:

It is good to have an aim. There is a chance I will be too ill to do this come September, but there is no harm in hoping and believing I will be well enough. Obviously the perfect outcome will be that I am unable to participate as I have just received my transplant (YAY) but I have been waiting nearly 14 months and not even had a false alarm, so I need to set myself little goals to accomplish to ensure that I stay motivated and focused on something other than "waiting for that call".

This will force me to up my exercise! I am hoping that by having something to work towards, I will be more inspired to exercise regularly, which will be good for my general health, muscle strength and lungs, whether I am able to participate in september or not. Being as fit as you can be is vital to ensure the best possible recovery post transplant, so the way I see it, this is a good plan either way!

Some lovely and amazing people have decided to join me in this challenge, so we will shortly be setting up a sponsorship page online, and I am hopeful that we can raise loads of money for the CF Trust. We are currently discussing the most important details, such as what to wear (the idea of doing this dressed as pink sparkly fairies is so very tempting...)

This blog will contain updates about the team, our fundraising efforts, and my own personal training journey towards this challenge.

YAY!