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!!