Saturday, April 29, 2006

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

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

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

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

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

Wednesday, April 26, 2006

Mad or just completely insane...?

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

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

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

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

We are now sponsorable, yaaaay! Please visit and give as much as you can. Muchly Thanks!

Sunday, April 23, 2006

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

Attitude is everything?

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

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

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

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

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

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

Wednesday, April 19, 2006

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

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

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

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

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

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

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

Friday, April 14, 2006

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

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

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

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

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

Wednesday, April 12, 2006

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

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

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

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

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

Monday, April 10, 2006

Homeward bound? It looks like it - woohoo!!

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

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

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

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

Friday, April 07, 2006

Someone on the message boards brought up the question is it better to never have been born at all, than live with an illness such as CF.

This got me thinking (shocking I know) and so I managed to ramble at length about bits and bobs that it made me think of, and now I am replicating said thoughts here, as my IVs are still running and I cant go to sleep till they finish.

I think I can honestly say I have never thought "I wish I was never born". The main reason for this is no matter what horrible stuff happens, I have this huge backlog of positive and wonderful experiences that also happned and are still happening. And when stacking the two piles up and measuring them against each other, the good far outweighs the bad.

I have the most amazing life, am thoroughly spoilt, and am surrounded by amazing people that constantly provide me with love laughter and opportunities. To wish to be born without CF is another matter entirely. It would be a lie to say that CF doesnt interfere in my life and what I want to do and achieve, and it makes it increasingly harder. CF is not a good thing, and I dont think I could ever make it so, even if I really tried. However those who know me well will not be surprised to hear that I always try and seek a good thing out of any thought pattern or situation, some sort of silver lining which I can then focus my attention on.

I think the main thing about my CF really is that because of it, I value my life so much. For example, when it looked like I would have to drop out of my degree, it made me appreciate doing it so much more, loving all the lectures, assignments etc(total geek I know!) when all my friends were focussing on it not being quite how they expected it, or the workload, or the topics chosen. I know how much I love my life, because last summer I had to fight 110% to get through a rather nasty pneumothorax, surgery and resulting complications, and it was that drive to continue experiencing life that gave me the strength to do so.

I seem to view my CF almost as a seperate aspect of my life, which is quite lucky as it helps me not entangle the difficulties CF creates into how I feel about my general life itself - it is more a hurdle to be overcome whilst living life then a huge part of my life itself (just the way I see it). Whether we would change things or not, this is what we have, so what better way to live it than to make the best of it? I started off a blank slate, an empty shell, and I have had so many amazing experiences and learned so much, laughed so many times, bought so many shoes, eaten so much haribo etc that for me, the gain, that life experience, is worth it. That is what living is...

Chloe, who died in January wrote the CF definition on In it she went into details about many of the unpleasant elements that CF creates in her life and all the things that are made uncertain because of it. But she ended by saying "But I do know that at least it makes you appreciate life, and live it to the full without wasting any time, which is certainly a life worth living." I think she was a very wise 19 year old.

"This is my life, and I choose to love it"

Thursday, April 06, 2006

Got my early morning alarm call for blood gases today, I tried the "if I say I dont have a headache today can I get away without?" card but failed spectacularly. However it really wasnt that bad - the wonderful thing about it being so early is that I was still half asleep - and even better than that the results were good, my O2 level in my blood was normal (woo!) and my CO2 was a little high, but the doctor said for someone with my lung function that was a pretty good result. So muchly celebratingness all round then!

With things progressing well, and breathlessness periods decreasing I am setting my sights firmly on discharge on monday, and then this relentless blogging will slow a little as I shall have no daily medical notes to add!

Wednesday, April 05, 2006

First of all, apologies for the interesting layout my blog has chosen to take on - am rather clever in the fact that I seem to have created a new blank column on the right hand side, pushing my profile etc all the way down to the bottom of the page, and I have no idea how I did it or how to undo it. Superb. Any blogmasters please do feel free to help me...!

Ward round was this morning, which is where all the doctors, including the Prof (top dog) come round and all look at you kind of like an interesting coloured fish in a tank. I got bored of waiting for them to come round, so filled the sink with water to wash my hair, which naturally made them appear at my door ready to inspect me. Good news is that they are aiming for a release date of Monday, YAY! We talked about the possibility of a new port, but as this would require a general anaesthetic, which they said "wouldnt be without risk" (doctors talk for bad plan) we arent persuing that route at present.

I had another puffy episode today (banish all mental pictures of me beachball like, I mean of the lung variety) and whilst the visual image of me looking a bit like a fish out of water is vaguely amusing, (plus the added bonus that I stop talking for a prolonged period of time) it is somewhat annoying so they have started all sorts of new and exciting drugs to open up my airways a little. Hurrah! I have got to have blood gases done at 6.30am tomorrow (blood drawn from the artery to examine O2 and CO2 levels, not so nice); I get the feeling they are trying to persuade me to go home...

Tuesday, April 04, 2006

Had my lung function redone today, I was a little aprehensive as it was the lowest ever when I came in at a tiny rodent amount of 16% (0.5 litres, small bottle of coke or similar) but it has bounced nicely back up to my usual 0.7 litres, which is 22%. For some reason being above that 20% threashold makes me feel so much safer, so am a happy bunny!

I had a rather puffy day today, and consequently spent all afternoon lying very still indeed, feeling as though I was running a marathon. Breathless periods like that come and go in patches, and it is horribly frustrating as literally just breathing is tiring, and you cant not breathe for a period to rest! I have pulled my muscles due to the strain of the afternoon, but it's nothing a bit of paracetamol and some good rest on high flow O2 mask (hurrah darth vader is back) wont fix.

Off for an early night, hopefully lungs will play along a bit more tomorrow so I can get up and do some excerise, I didnt even leave the room today, not even to visit the hot chocolate machine! (this hospital has the best hot choc in the world).

Monday, April 03, 2006

A dear friend sent me a little book as a get well present - it is one of those books full of motivational and inspirational quotes. I love these little things, I collect them and stash them away for when I am feeling less than pink, so it has been great to have some new ones to muse through. I think my new favourite is as follows:

"Wake up with a smile and go after it, enjoy it, taste it, smell it feel it." Jo Knapp.

(I inadvertantly posted then so apparently my blog feels I have been talking too much recently, which is probably true..!)

Anyway! I really like that little sentence, as it seems to me a nice simple way of looking at life. The way I see it is this; we cannot be certain what is next, either today or in the future. We cannot be sure what will happen after this life. We do not know whether things will get better or things will get worse. But each day you wake up, one thing you do know is that you have a day lying infront of you full of possibilities. OK maybe less possibilities for some of us than others - mine rotate around IVs and oxygen at the moment! But still, a WHOLE day in which to potentially achieve and learn and explore all sorts! I am sure there is a small case of "simple minds, simple pleasures" with me, but I really do think you can get a lot out of the smaller things of life. I had the nicest bubblebath earlier, so relaxing, dont you just love it when you fill it to the brim with bubbles as if you are a filmstar or similar?!

Ooh it sounds lame when written down, but I am having a nice "high on life" moment (must be the drugs) and I think sometimes we over complicate things by trying to work out the whys and whos and reasonings and predict where we are going...I dont believe that you can have anything you want, as life doesnt work like that, but I do believe you have a huge amount of choice in the life you live, and how much you enjoy it.

I am really beginning to ramble now, so I shall stop. Before boring everyone to tears. Plus the nurse is here to do my blood sugars and considering I munched my way through a small bag of haribo earlier I am predicting a less than satisfactory result!

Oh yes - and health wise, things are definitely on the up, blood results returning to normal, appetite now that of a small mammal due to hydrocortizone and hoping for release within a week....well a bit of wishful thinking never hurt anyone!

Sunday, April 02, 2006

I am back in the good old CF ward, in "my room". I was transferred back over yesterday; as it is the weekend and hospital transport doesnt run after 5pm on a friday (because no one will need to move wards at the weekend clearly) it was up to my mum, A, and 2 friends to get me, my bags, and various machinary back across to the other hospital!

It was a most amusing transfer, the carpark attendants obviously slightly suspicious of my mum and A's non official dress refused point blank to let them into the carpark to pick me up. Muchly arguing ensued and eventually they were begrudgingly given permission. Sparkly slippers donned, bags all packed and ready to go, the small matter of getting the ultrasonic nebuliser (imagine small coatstand/crane like contraption on wheels) back across was another matter entirely, and as there was no way it would fit in the car, my two friends were talked into wheeling it down the road, trying everso hard not to look like two strange people with an obsession for stealing random medical equipment. At one point, they hit a ramp and part of it came unhooked, so as they panicked and tried to reattach it, we pulled up and A helpfully wound down the window and took a photo on his phone.

I do love my family and friends - I swear these things arent supposed to be fun!