6 days on...

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!

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.

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

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!

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....

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

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!

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.

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

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!

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.

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!

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

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

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.

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!

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

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.

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

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!

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

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!

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!