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!