Okay just when I've whinged till I can (almost) whinge no more about the hospital, they go and surprise me. Firstly I got there just before 12, called the nurse, and she phoned right down to phlebotomy (hahaha phlebby) to order my blood tests, I went in 5 minutes later (!) and got done with a BUTTERFLY needle, not a green one! Sadly the lady used the exact same spot as monday so although the needle was appropriately small it was THE most painful needle insertion I've ever had. Ohmygod the pain... cringe. It was fine once she took it out though. So then off I sauntered up to the ward expecting to have to wait for a reg to ask loads of questions, demand phlegm and lung functions, and take 3 hours to write a script... it was really busy up there so I was thinking it would be an epic wait... but actually the fact that they were inundated worked in my favour and I had no obs done, no tests, and no doctor. The CF nurse simply got Dr to sign a script for cipro, gave it to me and said to call if it didn't help, and sent me packing!! Easiest. Visit. Ever. So finally I've got what I wanted in the first place to clear up a straight ickle chest infection. Two weeks cipro and a bit of piece and quiet.
I'm actually feeling okay, although looking a bit pale and uninteresting... my breathing has stayed very good. I was worried last night about it and used the oxygen for a few hours, but definately haven't needed any today which tells me that it is just simple crappy chest and not the pneumonia flaring up. Phewwww.
Train journey was quite good except someone farted in the very crowded carriage on the central line. Why? Just... why? I bet the sod was getting off at the very next stop as well. Madness.
Other than walking to and from train stations (about 20 mins total) I didn't exercise as energy levels have been rubbish. But I figure that since the breathings stayed okay I'll get back out for a walk tomorrow. I'll aim to do 40 minutes which I don't see there being any problems with. Although Adz will be over, and since he's been very under the weather with his chest today, we may be taking it easy.
Poor Adz might have to go in AGAIN the poor bloke... I really really hope that this blip clears up especially as he also really wants to get back with his cycling and take up running. So frustrating.
Anymwway, not much else to report except to remind you all to stay happy and well and hold your farts in on busy trains. xxx
Thursday 26 February 2009
Wednesday 25 February 2009
Bring on the orals... Hahahaha. Orals.
Yeah - as usual I've found a way to be pissed off. My chest has felt slightly more rubbish yesterday and today... so obviously last weeks 'blip' was indicative of something brewing. I didn't do ANY exercise yesterday, ended up staying in bed till about 4pm, coughing up the most attractive lung oysters I've seen in a while, and feeling tight chested. Shizzle.
Look away now if you aren't in the mood to read a rantfest....
Soo, rewind to clinic on frid-waa. I go "I'm not as good as two weeks ago" and my lung function was still 61% (rubbish for me. It was 73% when I left hospital). And there's more green plugginess coming up. "Oh" is the answer I get. And Dr was reluctant to add any antibiotics 'at this stage' just in case it gives me some fantastical drug reaction that I've never had.... so basically she'd prefer to wait till I feel crapola, struggling to breathe again and needing IVs?!
And here's the other niggle - EVERY time I've gone to them ill, someone has to go to me "why did you leave it so late. In the future just let us know as soon as it comes on". Erm... JELLLOOOO? I seem to recall that the week before going in reallly ill, I called when I wasn't too bad, went over and got checked out, and got away with a course of orals and steroids for a week. Which was fine and all I thought I needed except it didn't work. Not my fault, not their fault.
But apparently to them... me getting ill is down to me hiding away and letting it all brew up nicely in to a great big mess. And yet she won't give me some freaking orals when I ask for them.
So since the bloods were done at the wrong time anyway on monday and have to be redone tomorrow, meaning I'll go back up to LCH for the third time in a week (but hey don't worry I've got nothing else I rather be doing) to be bled with a GREEN needle (the huge ones that I only use to draw up drugs!), and I've told them that I want to see a doctor while I'm there. Ha. I'm not letting this go... why is it now acceptable for me to be arsing around with half the lung function I had in september, coughing up muck and waking up full of it, just because they don't want to add anything 'yet'. How bad do I have to get then... all fun and games to Drs isn't it, yet they forget it's us living with it.
Right. Rant over. I expect I'll get no exercise again today because yet again I can't catch my breath just walking around the house.
Oh wellll, give it a week I think and I think I'll be on form again. And untill then I'll just have to do what I can. Take it sleazy, fellow penguins xxx
Look away now if you aren't in the mood to read a rantfest....
Soo, rewind to clinic on frid-waa. I go "I'm not as good as two weeks ago" and my lung function was still 61% (rubbish for me. It was 73% when I left hospital). And there's more green plugginess coming up. "Oh" is the answer I get. And Dr was reluctant to add any antibiotics 'at this stage' just in case it gives me some fantastical drug reaction that I've never had.... so basically she'd prefer to wait till I feel crapola, struggling to breathe again and needing IVs?!
And here's the other niggle - EVERY time I've gone to them ill, someone has to go to me "why did you leave it so late. In the future just let us know as soon as it comes on". Erm... JELLLOOOO? I seem to recall that the week before going in reallly ill, I called when I wasn't too bad, went over and got checked out, and got away with a course of orals and steroids for a week. Which was fine and all I thought I needed except it didn't work. Not my fault, not their fault.
But apparently to them... me getting ill is down to me hiding away and letting it all brew up nicely in to a great big mess. And yet she won't give me some freaking orals when I ask for them.
So since the bloods were done at the wrong time anyway on monday and have to be redone tomorrow, meaning I'll go back up to LCH for the third time in a week (but hey don't worry I've got nothing else I rather be doing) to be bled with a GREEN needle (the huge ones that I only use to draw up drugs!), and I've told them that I want to see a doctor while I'm there. Ha. I'm not letting this go... why is it now acceptable for me to be arsing around with half the lung function I had in september, coughing up muck and waking up full of it, just because they don't want to add anything 'yet'. How bad do I have to get then... all fun and games to Drs isn't it, yet they forget it's us living with it.
Right. Rant over. I expect I'll get no exercise again today because yet again I can't catch my breath just walking around the house.
Oh wellll, give it a week I think and I think I'll be on form again. And untill then I'll just have to do what I can. Take it sleazy, fellow penguins xxx
Tuesday 24 February 2009
The day that was fun-filled
Howdy. Yesterday was the blood-taking-oxford-circus-going-garfunkles-eating-starbucks-drinking day and it was pretty good!
Adz picked me up and we took the train from guildford station, cleverly using the blue badge to park down a quiet little street to save excessive walkag at such an arly stage in the day. This is what I fear I've become rather good at - energy conservation... I HATE being breathless especially in public and especialspecially when there's ages to go! Train journey was good if a tidgey bit busy... we sat on those fold down seats right by the loo. You know that train loo that smells really bad and everyone who comes to use it forgets to push the *close*button when they leave, so we took on the job of toilet-door closers since we were right next to it. Which was our good deed accomplished for the day...
I hate those loos - for one thing the smell makes you want to do that breathing just through your mouth thing that you do when you drive through the country side, and then you taste the smell and that's even worse than smelling the smell; and then also when you use one and you step inside and push the *close* button on the wall, the door closes REALLLLLY slowly! So you have to stand there not knowing what to do with yourself cause you can't start pulling your pants down or looking in the mirror till it closes and you lock it! Feels like stars in their eyes like you should wave goodbye at the onlookers and come out in a costume or something. Weird.
Anyway, Adz had to do his IVs after the first blood was taken then wait an hour and get more taken for levels, and I just had one lot to do, so we got a drink and drank it really slow till the hour was up. And also tried to fit in as many 'danger kisses' as we dared. *Teeheeeee* For reference, a danger kiss is a kiss that two CFs do when they know they are most at risk of being caught in close contact - in the hospital... hahahahahaha. We are BAD.
So after lingering at LCH for what seemed an eternity, we were free to roam in to the distance that was oxford circus. We had lunchen at Garfunkles (american bistro type place - very nice too), took some CRAZZZZY pictures of us with bo-selecta faces, then went to do some serious shopping. Dedicated we were... covering all three floors of topshop and topman twice untill our primal fashion urges were satisfied. Adz got some pretty fit looking jeans and tops which is his birthday pressie off meee, and in H and M I got a couple of things too. Adz also got me the coolest t-shit with the underground map printed on it which I just think is trendy as trendy pie.
As per, my breathing seemed better towards the tail end of the day, and actually I was quite pleased that both of us managed the walking around train stations, the walk to and from LCH from the underground (10 minutes a go), walking up and down Oxford street for a couple of hours, and made it back to waterloo in one piece. So I definately got my walking in, and I think that days like that are quite good for building my stamina up at the moment, as it's a long time to be on the go and I've had none of that since being ill, really. Obviously we were cream-crackered but in a good way, so today I expect that I'll have a 40-50 minutes walk and try and keep a good pace up. And perhaps a couple of short jogs thrown in if it feels good!
xxx
Adz picked me up and we took the train from guildford station, cleverly using the blue badge to park down a quiet little street to save excessive walkag at such an arly stage in the day. This is what I fear I've become rather good at - energy conservation... I HATE being breathless especially in public and especialspecially when there's ages to go! Train journey was good if a tidgey bit busy... we sat on those fold down seats right by the loo. You know that train loo that smells really bad and everyone who comes to use it forgets to push the *close*button when they leave, so we took on the job of toilet-door closers since we were right next to it. Which was our good deed accomplished for the day...
I hate those loos - for one thing the smell makes you want to do that breathing just through your mouth thing that you do when you drive through the country side, and then you taste the smell and that's even worse than smelling the smell; and then also when you use one and you step inside and push the *close* button on the wall, the door closes REALLLLLY slowly! So you have to stand there not knowing what to do with yourself cause you can't start pulling your pants down or looking in the mirror till it closes and you lock it! Feels like stars in their eyes like you should wave goodbye at the onlookers and come out in a costume or something. Weird.
Anyway, Adz had to do his IVs after the first blood was taken then wait an hour and get more taken for levels, and I just had one lot to do, so we got a drink and drank it really slow till the hour was up. And also tried to fit in as many 'danger kisses' as we dared. *Teeheeeee* For reference, a danger kiss is a kiss that two CFs do when they know they are most at risk of being caught in close contact - in the hospital... hahahahahaha. We are BAD.
So after lingering at LCH for what seemed an eternity, we were free to roam in to the distance that was oxford circus. We had lunchen at Garfunkles (american bistro type place - very nice too), took some CRAZZZZY pictures of us with bo-selecta faces, then went to do some serious shopping. Dedicated we were... covering all three floors of topshop and topman twice untill our primal fashion urges were satisfied. Adz got some pretty fit looking jeans and tops which is his birthday pressie off meee, and in H and M I got a couple of things too. Adz also got me the coolest t-shit with the underground map printed on it which I just think is trendy as trendy pie.
As per, my breathing seemed better towards the tail end of the day, and actually I was quite pleased that both of us managed the walking around train stations, the walk to and from LCH from the underground (10 minutes a go), walking up and down Oxford street for a couple of hours, and made it back to waterloo in one piece. So I definately got my walking in, and I think that days like that are quite good for building my stamina up at the moment, as it's a long time to be on the go and I've had none of that since being ill, really. Obviously we were cream-crackered but in a good way, so today I expect that I'll have a 40-50 minutes walk and try and keep a good pace up. And perhaps a couple of short jogs thrown in if it feels good!
xxx
Sunday 22 February 2009
Eeking out the energy.
Harrumph. In my flash of brilliance yesterday I became rather excited... only to get the breathlessness back a bit today. But no matter - I still manage 2 miles at a reasonable pace, with a stop halfway up the hill to catch my breath coz it was making me start to feel sick! But other than that fine really. And the cough wasn't tooo bad untill this evening, so all in all a better couple of days really!
I'm going to go to oxford street tomo with Adz which should be gooood. So I can get Daddio's birthday pressie, and have a nice lunchen of some sort together! This combined with our fun trip to LCH for bloods. We know how to live we do.
Thanks to those of you who've started following the blog! The more the merrier lol. XXX
I'm going to go to oxford street tomo with Adz which should be gooood. So I can get Daddio's birthday pressie, and have a nice lunchen of some sort together! This combined with our fun trip to LCH for bloods. We know how to live we do.
Thanks to those of you who've started following the blog! The more the merrier lol. XXX
Saturday 21 February 2009
Showing those oxygen cylinders where to GO!
Off you toddle, portable oxygen offerage, I won't be needing you. Ha. Today was a day of much betterness... and didn't I need it after yesterday!
This makes me more confident that the past few days were just a blip and hopefully now I'll be getting back on track. I was totally shattered after yesterday so slept for about 10-11 hours, then got up and did all my treatments, had toast AND fresubin so that's like 900 calories by 11.30, then showered without being really winded afterwards (!) and did my hair and makeup because my friend was coming round to pick me up. We journeyed over to Arundel for a light stroll round the shops and a cappucino (see I'm well classy inniit). Was so nice to see her and catch up cause we haven't for months!
After I got back I went out for my daily constitutional... walk. But decided I'd try and go further since my breathing seemed so much better. And managed a whopping 3 miles! At a decent pace (took me about 1 hour and it's hilly). Coughed all the way but breathing stayed fantastically good, and clearing loads of stuff is always a bonus anyway!
>Happy<
This makes me more confident that the past few days were just a blip and hopefully now I'll be getting back on track. I was totally shattered after yesterday so slept for about 10-11 hours, then got up and did all my treatments, had toast AND fresubin so that's like 900 calories by 11.30, then showered without being really winded afterwards (!) and did my hair and makeup because my friend was coming round to pick me up. We journeyed over to Arundel for a light stroll round the shops and a cappucino (see I'm well classy inniit). Was so nice to see her and catch up cause we haven't for months!
After I got back I went out for my daily constitutional... walk. But decided I'd try and go further since my breathing seemed so much better. And managed a whopping 3 miles! At a decent pace (took me about 1 hour and it's hilly). Coughed all the way but breathing stayed fantastically good, and clearing loads of stuff is always a bonus anyway!
>Happy<
Friday 20 February 2009
Same shizzle different dizzle. Clinic madness.
Today was the day of clinic... again. I go every two weeks at the moment for a check up which means several hours travelling and several hours at the hospital (London Chest) for checking me numbers, talking about them with various members of the team, grumbling about them with other patients, then chilling down in the bowels of the hospital waiting for pharmacy to count out pills and argue over dosages. Generally the way things go is that nothing goes how I want. Ha. Except that today was made about 100 x better by the fact that lovely bf Adam was also there for a check up and prod and drove me home in his georgeous convertable. Cheufferage... sweeeet. He also bought crisps and drinks at the hospy and was there to lurk in the corridor for general lurkage company. Thankyou Adz, lovely boy!
I was though, as usual, monumentally ticked off about my general progress. And now I'm annoyed at myself for being so ticked off because I AM better... I'm just not as better as I thought I'd be by now. For starters you go in and 'check in' in outpatients, then you wait for the nurse to write your lung function card out, give you a sputum pot for your donations, and then you skip along to respiritory function unit (RFU). Here, you step in to the 90 degree room, exchange pleasantries with the nice lady in there, and take a moment to poo yourself about your lung function. You sit in front of the ancient spirometer and get a nose clip pegged on, and then take a HEEEUUUUGGGE deep breath in, and blow in back out as fast and as hard as you can for as long as you can till you feel like your lungs are shrivelled little raisins, whilst the RFU technician goes "keep going, out out out out... keeeppp bbllloowwwinggg." in a really funny voice.
You have a bit of a rest then do it twice more... and this is why it's adviseable to erm... pay a visit shortly before RFU. Risky business this forced expiration. You then get a print out of your blows on a delightful bright yellow sheet of A4, examine it, grumble and/or make excuses to anyone unlucky enough to catch your wrath, and then storm breathlessly back to outpatients to hand it over. Height and weight are checked, something else to start making excuses for, and you go and wait to see individual members of le team.
I blew 61% for my lung function, so pretty much identical to last time. Except this time I didn;t have the excuse of tight back muscles and sore ribs. So this appears to be my actual % at the moment. Not wholly impressive. Furthermore my sats (o2 levels) were 93-94, where they were 97 two weeks ago. I know that's not really low especially when they were about 75 before, but nonetheless I could have done without them being lowered, at least with my fast breathing. Physio was therefore slightly concerned with the breathlessness issues and my not feeling as great as two weeks ago, and suggested portable O2 for my exercise to help me do a bit more. Needless to say I'm not keen to start back with O2 use as I just feel it's a total step in the wrong direction and wouldn't probably help me much anyway since I don't use any at rest. My weight was 43kg from 43.4 last time so more or less the same (BMI 18). And even though I reckon that's okay (I've got a small frame anyway), they're still on about me putting on weight and that I need to make more of an effort with food/eating/my high calorie supplements. Basically they like you to be fatties with CF and act as if having a BMI of 20 or over is brilliant for your lung functions and immune system... but to be honest I've been pretty much as healthy as I can be at lower weights than this, and I refuse to believe that packing on the pounds is going to really help my lungs that much. Although I do agree I should make more effort with my pathetic appetite... meh. Since I was a right little cow about drinking calshakes (600 kcal milkshake) anymore coz I've realllllly gone off them - too rich and sickly, I've started back with fresubin which is smaller and a bit more balanced and lower in fat, so it doesn't make you want to vomit after one basically. I'll have 2-3 of those a day which is an extra 600-900 calories a day. And I reckon at the moment I manage to eat about 2000 which is maintaining me minus a bit (and I do very little exercise right now). Ho humm...
Even though I admitted I'm not really as great over the past few days, I do actually feel quite well in myself and have plenty more energy ect than before, plus my chest isn't that gunky, so we're not changing anything or doing any more antibiotics for now. I have to go back on monday for blood tests though (no idea why it couldn't be done today). So more travelling... however my cunning plan is to combine it with going to oxford circus for SHOPPING! Well, shopping for my Dads birthday present, which will be a laugh. I'm thinking a nice new shirt, but I'm not sure as I got him a jumper for christmas. I will be buying him toffee from thorntons though, as I think if a gift giving occasion passed without me giving him toffee, he would probably be sent in to extreme toffee-deprived delirium and I would possibly be kicked out. Will also probably get come lunch somewhere with Adam and generally make it a worthwhile day out!
Exercise was limited today due to me being on a train or at the hospital all day, so it was just the walk between stations and from the tube to the hospital. I'll try and have a longer one tomorrow though and see how it goes. Hopefully these past few days have just been a slight blip and I'll be over it. However if I'm feeling worse I'll ask to redo my lung functions and sats and see if anything needs doing. I'm not going to hang around over it and let it get bad again even if it means being a tidgey bit of a hypochondriac.
Righto, sorry for the grumble and here's to tomorrow being a new day and a fresh start! xxx
I was though, as usual, monumentally ticked off about my general progress. And now I'm annoyed at myself for being so ticked off because I AM better... I'm just not as better as I thought I'd be by now. For starters you go in and 'check in' in outpatients, then you wait for the nurse to write your lung function card out, give you a sputum pot for your donations, and then you skip along to respiritory function unit (RFU). Here, you step in to the 90 degree room, exchange pleasantries with the nice lady in there, and take a moment to poo yourself about your lung function. You sit in front of the ancient spirometer and get a nose clip pegged on, and then take a HEEEUUUUGGGE deep breath in, and blow in back out as fast and as hard as you can for as long as you can till you feel like your lungs are shrivelled little raisins, whilst the RFU technician goes "keep going, out out out out... keeeppp bbllloowwwinggg." in a really funny voice.
You have a bit of a rest then do it twice more... and this is why it's adviseable to erm... pay a visit shortly before RFU. Risky business this forced expiration. You then get a print out of your blows on a delightful bright yellow sheet of A4, examine it, grumble and/or make excuses to anyone unlucky enough to catch your wrath, and then storm breathlessly back to outpatients to hand it over. Height and weight are checked, something else to start making excuses for, and you go and wait to see individual members of le team.
I blew 61% for my lung function, so pretty much identical to last time. Except this time I didn;t have the excuse of tight back muscles and sore ribs. So this appears to be my actual % at the moment. Not wholly impressive. Furthermore my sats (o2 levels) were 93-94, where they were 97 two weeks ago. I know that's not really low especially when they were about 75 before, but nonetheless I could have done without them being lowered, at least with my fast breathing. Physio was therefore slightly concerned with the breathlessness issues and my not feeling as great as two weeks ago, and suggested portable O2 for my exercise to help me do a bit more. Needless to say I'm not keen to start back with O2 use as I just feel it's a total step in the wrong direction and wouldn't probably help me much anyway since I don't use any at rest. My weight was 43kg from 43.4 last time so more or less the same (BMI 18). And even though I reckon that's okay (I've got a small frame anyway), they're still on about me putting on weight and that I need to make more of an effort with food/eating/my high calorie supplements. Basically they like you to be fatties with CF and act as if having a BMI of 20 or over is brilliant for your lung functions and immune system... but to be honest I've been pretty much as healthy as I can be at lower weights than this, and I refuse to believe that packing on the pounds is going to really help my lungs that much. Although I do agree I should make more effort with my pathetic appetite... meh. Since I was a right little cow about drinking calshakes (600 kcal milkshake) anymore coz I've realllllly gone off them - too rich and sickly, I've started back with fresubin which is smaller and a bit more balanced and lower in fat, so it doesn't make you want to vomit after one basically. I'll have 2-3 of those a day which is an extra 600-900 calories a day. And I reckon at the moment I manage to eat about 2000 which is maintaining me minus a bit (and I do very little exercise right now). Ho humm...
Even though I admitted I'm not really as great over the past few days, I do actually feel quite well in myself and have plenty more energy ect than before, plus my chest isn't that gunky, so we're not changing anything or doing any more antibiotics for now. I have to go back on monday for blood tests though (no idea why it couldn't be done today). So more travelling... however my cunning plan is to combine it with going to oxford circus for SHOPPING! Well, shopping for my Dads birthday present, which will be a laugh. I'm thinking a nice new shirt, but I'm not sure as I got him a jumper for christmas. I will be buying him toffee from thorntons though, as I think if a gift giving occasion passed without me giving him toffee, he would probably be sent in to extreme toffee-deprived delirium and I would possibly be kicked out. Will also probably get come lunch somewhere with Adam and generally make it a worthwhile day out!
Exercise was limited today due to me being on a train or at the hospital all day, so it was just the walk between stations and from the tube to the hospital. I'll try and have a longer one tomorrow though and see how it goes. Hopefully these past few days have just been a slight blip and I'll be over it. However if I'm feeling worse I'll ask to redo my lung functions and sats and see if anything needs doing. I'm not going to hang around over it and let it get bad again even if it means being a tidgey bit of a hypochondriac.
Righto, sorry for the grumble and here's to tomorrow being a new day and a fresh start! xxx
Wednesday 18 February 2009
Gymage...Slow gymage, but GYMAGE!!
Howdy. Yesterday as promised I mixed things up a little bit and shuffled along to the gym with Dad (who was playing squash - he's quite good). The aim was to do my usualy walk plus a little extra as long as I could manage, and I'm pleased to say that I did!
I started with 30 minutes on the treadmill at 4-5 kmph, on a cross country profile, which was pretty much a simulation of what I've been doing everyday, then I did 10 minutes on a few of the weight machines. Nothing major, just some moderate weights and medium reps to get some tone and strength coming back.
After this I still felt pretty good so I went on the bike for 10 minutes. That was very hard actually... for some reason I was struggling with my breathing alot more than I do walking these days... maybe because you're leaning forward and squishing your lungs a bit? Don't know, but I perservered mostly because I was already getting looks for peddling so slowly and didn't want to look more of a loser. I recovered fairly fast though, and so decided to round it off with a final 10 minutes walking. So an hours exercise for me! Was shattered that evening, but in a good way.
I've found that the longer I'm able to keep it up and the more coughing I can get done early in the workout without tightening up, plus a decent cough right at the end of the workout, the better I seem to be throughout the rest of the day. I reckon this is for two reasons - firstly the most obvious, that I'm clearing stuff off my chest in larger quantities and from deeper down when I get really out of breath, plus it opens up little bits of my lung that stick together when I am shallow breathing (most of the time...) and gets more air in. Secondly, I can't help but feel that there is a non-measurable element that might come down to several factors - my body's physical perception of exertion, the way my muscles want to make use of oxygen ect that day, subtle changes in how well rested I am, and finally my psychological state.
It's all very well being able to state in amounts how your temperature is, what your lung functions are, oxygen saturations, weight, and amount of sputum you bring up daily, but actually the more normal these become, the more I'll have to accept that health and fitness as an entity aren't dependant on decimal points.
Being a sciencey person, I wish it were that easy, to be able to say that once my lung x-ray has cleared and my lung volumes are up that everything will be fixed. But actually it will be much more complicated than that in the long run. For instance my body's perception of exertion is one thing, but my mentail perception is another. How do I begin to know what's okay for me to feel like with increasing exercise? I mean, I'm not stupid, and I wouldn't go beyond real pain, faintness or irregular heartbeats. But at the same time, I'm not the average schmoe who's let themselves go a bit and for who extreme breathlessness after walking up the stairs would warrant a doctors visit... I already know exactly why this is happening to me, and now that I'm in recovery and know that I've lived through some pretty grim breathing difficulties, I have to put up with it for now. It's here and it's queer, but there's nothing I can do except get on with my 'pulmonary rehab' with the panting always there.
So what I'm trying to say is... with increasing ability to exert myself, I'm not entirely sure if it'll be the speed and effort level that go up with the panting and gasping still an issue, or if I should stay at the same effort until that subsides and I feel comfortable to move to the next level up. I suppose this is because in all honesty, I have no idea how long my breathing will be abnormal for. I mean I think it's a matter of months untill I see some major changes with my day to day breathing. And don't get me wrong, it's already miles better with not needing O2 ect. But to look at my chest x-ray two weeks ago... dissappointing to say the least. It looked as rubbish as when I was feeling my worst! Go figure. My Doctor says that quite often radiography is the last thing to improve, so this doesn't in any way mean that things aren't improving - evidently I'm way more healthy so we'll hang on to that for now.
I'm actually pretty optimistic about my infection levels too... I was so nervous that with the increased gunkiness, immune suppression from drugs, not being as active ect ect, I would pick up an infection pretty soon and be needing at least a course of orals if not IVs, but knock on wood, this hasn't been a real issue yet! And having been off IVs for 7 weeks this is quite good. I have got some infected looking stuff all the time, which due to the nature of CF is quite normal, but on days like today, where I cough up more and it tastes funny, I get slightly nervous. However as of monday I started my long term azithromycin (an oral antibiotic), which I was optomistic about as I think in the long term I do need some help to reduce the odds of infection just because I'm on steroids so can't fight it off as well. I also have colomycin, another antibiotic, which I make up from powder in vials and inhale with the nebuliser. This helps prevent pseudomonas growing in your lungs so hopefully I should be quite a germ free zone for a while!
Not much to report from today except I had a nice walk (!) for about 40 minutes. I tried to keep the pace up a bit too even though it was hard work at first with the coughing. However after this subsided and with a much clearer chest, I found the walk quite pleasant, and wasn't too breathless at all at the end. (Had a little 30 second jog too!)
Tomorrow I'll be spending a lovely day with my boyfriend Adam (he blogs too) who's also sporty and also trying to regain some fitness after a tough few months healthwise. So we'll have a walk together (I'm going to try and do some talking as we go as I need to start getting used to controlling my breathing better) and then chill, cook something ect ect. Should be loverly!
Right, enough ramblings for one day methinks, happy tatas xxx
I started with 30 minutes on the treadmill at 4-5 kmph, on a cross country profile, which was pretty much a simulation of what I've been doing everyday, then I did 10 minutes on a few of the weight machines. Nothing major, just some moderate weights and medium reps to get some tone and strength coming back.
After this I still felt pretty good so I went on the bike for 10 minutes. That was very hard actually... for some reason I was struggling with my breathing alot more than I do walking these days... maybe because you're leaning forward and squishing your lungs a bit? Don't know, but I perservered mostly because I was already getting looks for peddling so slowly and didn't want to look more of a loser. I recovered fairly fast though, and so decided to round it off with a final 10 minutes walking. So an hours exercise for me! Was shattered that evening, but in a good way.
I've found that the longer I'm able to keep it up and the more coughing I can get done early in the workout without tightening up, plus a decent cough right at the end of the workout, the better I seem to be throughout the rest of the day. I reckon this is for two reasons - firstly the most obvious, that I'm clearing stuff off my chest in larger quantities and from deeper down when I get really out of breath, plus it opens up little bits of my lung that stick together when I am shallow breathing (most of the time...) and gets more air in. Secondly, I can't help but feel that there is a non-measurable element that might come down to several factors - my body's physical perception of exertion, the way my muscles want to make use of oxygen ect that day, subtle changes in how well rested I am, and finally my psychological state.
It's all very well being able to state in amounts how your temperature is, what your lung functions are, oxygen saturations, weight, and amount of sputum you bring up daily, but actually the more normal these become, the more I'll have to accept that health and fitness as an entity aren't dependant on decimal points.
Being a sciencey person, I wish it were that easy, to be able to say that once my lung x-ray has cleared and my lung volumes are up that everything will be fixed. But actually it will be much more complicated than that in the long run. For instance my body's perception of exertion is one thing, but my mentail perception is another. How do I begin to know what's okay for me to feel like with increasing exercise? I mean, I'm not stupid, and I wouldn't go beyond real pain, faintness or irregular heartbeats. But at the same time, I'm not the average schmoe who's let themselves go a bit and for who extreme breathlessness after walking up the stairs would warrant a doctors visit... I already know exactly why this is happening to me, and now that I'm in recovery and know that I've lived through some pretty grim breathing difficulties, I have to put up with it for now. It's here and it's queer, but there's nothing I can do except get on with my 'pulmonary rehab' with the panting always there.
So what I'm trying to say is... with increasing ability to exert myself, I'm not entirely sure if it'll be the speed and effort level that go up with the panting and gasping still an issue, or if I should stay at the same effort until that subsides and I feel comfortable to move to the next level up. I suppose this is because in all honesty, I have no idea how long my breathing will be abnormal for. I mean I think it's a matter of months untill I see some major changes with my day to day breathing. And don't get me wrong, it's already miles better with not needing O2 ect. But to look at my chest x-ray two weeks ago... dissappointing to say the least. It looked as rubbish as when I was feeling my worst! Go figure. My Doctor says that quite often radiography is the last thing to improve, so this doesn't in any way mean that things aren't improving - evidently I'm way more healthy so we'll hang on to that for now.
I'm actually pretty optimistic about my infection levels too... I was so nervous that with the increased gunkiness, immune suppression from drugs, not being as active ect ect, I would pick up an infection pretty soon and be needing at least a course of orals if not IVs, but knock on wood, this hasn't been a real issue yet! And having been off IVs for 7 weeks this is quite good. I have got some infected looking stuff all the time, which due to the nature of CF is quite normal, but on days like today, where I cough up more and it tastes funny, I get slightly nervous. However as of monday I started my long term azithromycin (an oral antibiotic), which I was optomistic about as I think in the long term I do need some help to reduce the odds of infection just because I'm on steroids so can't fight it off as well. I also have colomycin, another antibiotic, which I make up from powder in vials and inhale with the nebuliser. This helps prevent pseudomonas growing in your lungs so hopefully I should be quite a germ free zone for a while!
Not much to report from today except I had a nice walk (!) for about 40 minutes. I tried to keep the pace up a bit too even though it was hard work at first with the coughing. However after this subsided and with a much clearer chest, I found the walk quite pleasant, and wasn't too breathless at all at the end. (Had a little 30 second jog too!)
Tomorrow I'll be spending a lovely day with my boyfriend Adam (he blogs too) who's also sporty and also trying to regain some fitness after a tough few months healthwise. So we'll have a walk together (I'm going to try and do some talking as we go as I need to start getting used to controlling my breathing better) and then chill, cook something ect ect. Should be loverly!
Right, enough ramblings for one day methinks, happy tatas xxx
Monday 16 February 2009
A snort on the wild side
Today was an early start - first one in like forever. This is for a number of reasons - 1) I've become quite lazy and like my sleep; 2) I haven't really had anything to get up for except medication and coughing, which I do and then fall asleep again and 3) I've got used to feeling so ill and breathless/tight chested in the morning tha frankly it's easier to just sleep through it and deal with it later on.
This brings me on to the post title... I still have this residual stiff chest thing, which makes it really quite painful to take a full breath in and fill my lungs without immediately coughing and spluttering afterwards. This has improved, but has gone on for so long now that I subconciously clench my belly muscles and inspiratory muscles to 'clamp' when I'm about to inflate my lungs during say... coughing fits, post sneeze, and yawning! This results in a snorting sound in the back of my throat... very very annoying and very funny too as it's like I've got no control over making pig noises!
Just thought i'd share that with you...
Anyway early start and fairly successful too - not too badly breathless although when I got over to uni to sort out some things I noticed the difference between walking in the morning (which I haven't been) and walking in the afternoon with a clear chest and more relaxed lungs.
Still, I got my 30 minutes in so another day another dollar really.
Tomorrow I'm going to the gym, so will know what pace I'm doing, can push a bit harder as I'll be on a treadmill, and will do some weights afterwards!
Bring on the weights. Haha.
This brings me on to the post title... I still have this residual stiff chest thing, which makes it really quite painful to take a full breath in and fill my lungs without immediately coughing and spluttering afterwards. This has improved, but has gone on for so long now that I subconciously clench my belly muscles and inspiratory muscles to 'clamp' when I'm about to inflate my lungs during say... coughing fits, post sneeze, and yawning! This results in a snorting sound in the back of my throat... very very annoying and very funny too as it's like I've got no control over making pig noises!
Just thought i'd share that with you...
Anyway early start and fairly successful too - not too badly breathless although when I got over to uni to sort out some things I noticed the difference between walking in the morning (which I haven't been) and walking in the afternoon with a clear chest and more relaxed lungs.
Still, I got my 30 minutes in so another day another dollar really.
Tomorrow I'm going to the gym, so will know what pace I'm doing, can push a bit harder as I'll be on a treadmill, and will do some weights afterwards!
Bring on the weights. Haha.
Sunday 15 February 2009
Finally some good news!
After several months of nothing but pants-ness, I can finally say I'm noticing real changes in my exercise tolerance. Last week I was still having alot of difficulty after just 5-10 minutes walking and would still have times where despite wanting to complete my 30 minutes, I was reduced to a grunting, blue-tinged pile of tracksuit after 10. Of course these were the bad days - on good days 30-40 minutes was a hard workout but manageable.
Today though, out I strolled expecting the panting and nagging cough to creep on at any moment and whilst I did have my usual physio-induced-chest-clearing cough, it didn't tighten up and go on for agesm and get this - the little bit of a puff I had going on actually subsided once my coughing reduced. So I was actually hardly out of breath!
I mean I was breathing hard, but in a way which I associate with exercise, not in a way that was really unsettling.
AND, I went up my normal hill to the 0.75 mile point, then up the next huge hill which I have done but only on expceptionally good days and very very slowly at that, then a little bit further along after that WITHOUT ANY RESTS. Bloody fantastic it was.
I met my Mum coming back, and we walked the last half together, chatting a bit. Which sounds all normal and mundane - except that a week ago I couldn't walk and talk at all. Not ever or else I felt totally out of control with my breathing. But I actually talked in proper senteces, and got to the front door hardly even breathless.
So that was a 2 mile walk, about 40 minutes, with talking and without collapsing in to a chair afterwards! Result.
It's so odd how I can have long periods with no change whatsoever, and then sudden big improvements. Odd, but also amazing when it happens.
I actually really enjoyed my walk today for the first time in long while.
Of course I'll take it all with a pinch of salt and not get upset IF tomorrow isn't as fantastic and I am more breathless. Because I've had a taste of my old self again there's just one more thing to keep me motivated to carry on plugging away at it.
I do however feel slightly sorry for the CF team who I'll be seeing on Friday... they've had enough of my ramblings about training ect, and now will have to endure me going on about my walk. Sorry! Hopefully since my rib and back muscles are far less tight and painful (they were very battered and very sore from the violent cough - which is much less now) my lung functions will be up. I couldn't get a decent volume up because of not being able to take a really deep breath in. So I'm hoping for 70%! And I'm no longer worried about oxygen saturations - they were effing marvellous at rest last week - 97 all the way!
Today though, out I strolled expecting the panting and nagging cough to creep on at any moment and whilst I did have my usual physio-induced-chest-clearing cough, it didn't tighten up and go on for agesm and get this - the little bit of a puff I had going on actually subsided once my coughing reduced. So I was actually hardly out of breath!
I mean I was breathing hard, but in a way which I associate with exercise, not in a way that was really unsettling.
AND, I went up my normal hill to the 0.75 mile point, then up the next huge hill which I have done but only on expceptionally good days and very very slowly at that, then a little bit further along after that WITHOUT ANY RESTS. Bloody fantastic it was.
I met my Mum coming back, and we walked the last half together, chatting a bit. Which sounds all normal and mundane - except that a week ago I couldn't walk and talk at all. Not ever or else I felt totally out of control with my breathing. But I actually talked in proper senteces, and got to the front door hardly even breathless.
So that was a 2 mile walk, about 40 minutes, with talking and without collapsing in to a chair afterwards! Result.
It's so odd how I can have long periods with no change whatsoever, and then sudden big improvements. Odd, but also amazing when it happens.
I actually really enjoyed my walk today for the first time in long while.
Of course I'll take it all with a pinch of salt and not get upset IF tomorrow isn't as fantastic and I am more breathless. Because I've had a taste of my old self again there's just one more thing to keep me motivated to carry on plugging away at it.
I do however feel slightly sorry for the CF team who I'll be seeing on Friday... they've had enough of my ramblings about training ect, and now will have to endure me going on about my walk. Sorry! Hopefully since my rib and back muscles are far less tight and painful (they were very battered and very sore from the violent cough - which is much less now) my lung functions will be up. I couldn't get a decent volume up because of not being able to take a really deep breath in. So I'm hoping for 70%! And I'm no longer worried about oxygen saturations - they were effing marvellous at rest last week - 97 all the way!
Saturday 14 February 2009
You start at the beginning.
Or at least I do. No choice there, because while there's the same sporty person inside of me, further down theres a pair of lungs which are only just beginning to do their job again. It's like that R. Kelly song in reverse: "My minds telling me YES... but my body's telling me noo!"
At my worst, only 40% of the air that reached my alveoli (air sacs responsible for getting oxygen in and carbon dioxide out of the blood) actually got through to my blood, and since my airways were so inflammed and clogged, only about half the air I tried to breathe in, went in. So as you can imagine, breathing like a fish out of water got me no-where and even with oxygen I was pretty much laid up. Thanks to nuclear doses of steroids and antibiotics, I'm in a much better way now - about 60% lung function and gas exchange has probably doubled. So these days, I'm very breathless on exertion, like walking around or going up the stairs, but I breathe almost normally at rest. It's quite a lovely feeling to have, not gasping 24 hours a day, but with exercise still difficult, the temptation can often be to avoid it.
I know, I loved getting out of breath and doing lung-busting workouts before, so why not now? Hard to explain, but it's a different type of breathless... It comes on thick and fast, it burns, and it fills you with dread that you might not get your normal breathing back. Since my lung disease is a restrictive one as well as obstructive, I can't take very deep breaths yet and so am stuck with fairly shallow breathing for now.
Of course I'm harping on here about how difficult things are, but the aim isn't to make excuses for slow progress or set myself up for failure - it's to remind me how low you can go and how you can get back on track regardless. The goal in 'training' isn't to get fast quick or even get particularly fast at all, but to gradually get my old breathing back, and to gradually be able to run freely again. My body and mind are getting there and the way I see it, they may always just be a step or two ahead of my lungs.
Hence the name of this blog... If I have to put up with alot of pain in the beginning, it'll be worth it to coax my lungs out of their current state. The rest of me has to set a good example and my lungs will have to get on with it as best they can.
The plan is really to gradually add in teeny bits of running to my walks, which are getting more and more comfortable. Right now, I pick up in to a jog-shuffle for about 30 seconds on the last half of the walk... then take a couple of minutes to catch my breath, and carry on walking back. When this is more or less comfortable and I no longer have to stop altogether after the 'run'. I'll increase it to a minute. when that's comfortable, 90 seconds, and so on and so forth. Hopefully after some time things will pick up somewhat quicker, and the increments can be increased. This way, I can build up to 20 minutes of running without too much bother. No time frame as of yet, because I've yet to find out how long it'll take for me to feel comfortable with the 30 seconds.
We shall see.
At my worst, only 40% of the air that reached my alveoli (air sacs responsible for getting oxygen in and carbon dioxide out of the blood) actually got through to my blood, and since my airways were so inflammed and clogged, only about half the air I tried to breathe in, went in. So as you can imagine, breathing like a fish out of water got me no-where and even with oxygen I was pretty much laid up. Thanks to nuclear doses of steroids and antibiotics, I'm in a much better way now - about 60% lung function and gas exchange has probably doubled. So these days, I'm very breathless on exertion, like walking around or going up the stairs, but I breathe almost normally at rest. It's quite a lovely feeling to have, not gasping 24 hours a day, but with exercise still difficult, the temptation can often be to avoid it.
I know, I loved getting out of breath and doing lung-busting workouts before, so why not now? Hard to explain, but it's a different type of breathless... It comes on thick and fast, it burns, and it fills you with dread that you might not get your normal breathing back. Since my lung disease is a restrictive one as well as obstructive, I can't take very deep breaths yet and so am stuck with fairly shallow breathing for now.
Of course I'm harping on here about how difficult things are, but the aim isn't to make excuses for slow progress or set myself up for failure - it's to remind me how low you can go and how you can get back on track regardless. The goal in 'training' isn't to get fast quick or even get particularly fast at all, but to gradually get my old breathing back, and to gradually be able to run freely again. My body and mind are getting there and the way I see it, they may always just be a step or two ahead of my lungs.
Hence the name of this blog... If I have to put up with alot of pain in the beginning, it'll be worth it to coax my lungs out of their current state. The rest of me has to set a good example and my lungs will have to get on with it as best they can.
The plan is really to gradually add in teeny bits of running to my walks, which are getting more and more comfortable. Right now, I pick up in to a jog-shuffle for about 30 seconds on the last half of the walk... then take a couple of minutes to catch my breath, and carry on walking back. When this is more or less comfortable and I no longer have to stop altogether after the 'run'. I'll increase it to a minute. when that's comfortable, 90 seconds, and so on and so forth. Hopefully after some time things will pick up somewhat quicker, and the increments can be increased. This way, I can build up to 20 minutes of running without too much bother. No time frame as of yet, because I've yet to find out how long it'll take for me to feel comfortable with the 30 seconds.
We shall see.
Friday 13 February 2009
And the rest is history...
Very very warm and sunny greetings from a not very warm and sunny place. And in advance for those who take an interest in my blogging and my journey, thanks very much for joining in!
So here is me, past one in the morning, and I've taken the plunge to a world of blogging... another lighthearted pastime while I feel a tidgey bit as if my life is on hold. No screw it... my life is officially on hold in almost all respects.
Oh woe woe I hear you say... but wait - I don't mean it like that! Because with all the dramatically enriched and self involed drivvle I can possibly keep back, I'm happy to have a life to put on hold.
Backtrack to November 6th of last year where I packed my rucksack with not enough things and headed over to my CF team with a stinker of a chest infection /asthma flare up...
In I went for 2 weeks IV antibiotics ect to get rid of my 'bugs' (pseudomonas and MRSA for anyone who might wonder - very boring and same-ey CF bacteria). And on the treatment went, when after two weeks of very good treatment and improved breathing I developed 'mystery' high fevers and unexplained tiredness and weightloss.
Ho hum, thought I who, whilst slightly confused and annoyed at the imminant prolonged stay, could only see this as a blip and was pretty happy to have got my lung functions back up a bit.
As more and more things got ruled out and I had more and more tests done to get to the root of my fevers, I became rather short of breath and my gunky cough came back with avengance. Somehow although my lung functions hadn't dropped much at all at this point, I was quite worryingly hypoxic at the slightest exertion and getting more breathless by the day. A repeat chest x-ray was shocking to say the least and I appeared to have developed severe pneumonia. Which would have made sense except my bugs had settled and I had already had over two weeks of numerous antibiotics.
A CT scan was as scarey as the x-ray and after two bronchoscopys with a biopsy, I was found to have developed cryptogenic organising pneumonia, or COP. Or also called Bronchiolitis Obliterans Organising pneumonia (BOOP). I prefer the former, which is shorter, easier, and also doesn't put a lighthearted spin on a pretty evil illness. I refuse to associate cute sexy cartoon characters with extensive and life threatening lung inflammation.. but that's me and my ways.
Anyway what I'm saying is that I got really more ill than I've ever been in my entire life, had at least four instances in which I wasn't sure if I'd be around in 3 minutes let alone 3 months, and after a lengthy hospital stay and some very difficult early stages of recovery I'm still in one piece. And contemplating ways in which to get the old me back in action. Enough medical bits for now... on to some sporty stuff.
Before these past few months I was a rather keen runner and ahem... gym bunny. My fitness and ability to get out and have a whole part of my life dedicated to running was paramount to me and always will be although my priorities have changed for the time being.
I ran for my county several times in national championships, ran 10ks, 5ks, road relays, cross country, track and anywhere I could really! I would run to wake up, run to wind down, to calm my nerves for exams, to console myself after said exams, to socialise, to prove myself, and to just... run. What I love about it is that almost anyone can run, and almost everyone has different reasons for doing it. It's such a personal thing, or not if you don't want it to be, you can achieve for others, although one would hope that you end up doing it just for you.
All you need is a decent pair of shoes and you. Well in reality if this were true I would not have aquired some truly magical items which I blame running for costing me. And my boobs would be like golfballs in a pair of tights. But you don't need much is all I'm saying.
At my fittest, before a somewhat unfortunate entire year with my health, I ran a 10k in just over 40 minutes. And for me this was great, but onwards I was striving for a sub 40, and then a sub 38. Ahh, much plannage, but not much do-age... you might be thinking. But having just upped my mileage to around 40 miles a week, loads of cross training, and added circuits and weights, this was definately becoming possible.
I won't divulge in to the following few months for now but all you need to know is that this level of fitness declined for a fair spell and having fluctuated over the year, was beginning to make real progress until november.
I've heard that many things will change your priorities in regards to your goals, desires, needs, and even principles, but never truly understood how that would feel. To have a bodily function such as breathing stripped from you is a formidable experience that I wouldn't wish on anyone and I hope that no-one reading this ever really knows the feeling.
Where do I stand now with my 'fitness'? Fitness is a funny word and the meaning's changed for me almost overnight.
Before, fitness almost transpired to invincability - strength, speed, constant improvement and constant progress, never missing a work out, and never blaming anything other than myself for lack of this. It would never have meant being able to go up a flight of stairs without needing a break or a 5 minutes to catch my breath afterwards. And not needing oxygen blasting away up my nose to function. Which is why I can't bring myself to say with seriousness how fit I am. I'm now fit enough to be out of hospital and fit enough to do a bit of socialising and some quiet study (I deffered my university year). I'm fit enough to stay awake all day and to travel to my hospital appointments alone, and all this to us is remarkable progress in a couple of months.
Thankful and sentimental as I am to be 'getting there', I can't help getting some comfort in numbers and figures instead of just relying on how I feel. I currently walk at a decent (that's not brisk, it's just fast enough to appear normal and not like a human snail) pace for 30-40 minutes a day. NO oxygen... athanku avery much.
Brill, very good, but I want to run again. Like, I really want to run. Not possible for more than 30 seconds at the moment or I would do myself damage, but becoming a realiy for some future point. I can't put any sensible time frame on this because I can't even talk whilst I walk for now, but I remind myself how far I've come in the past month even, and it just seems that bit more real now that this time next year, I'll be able to not think about going upstairs without upsetting my breathing, I'll be able to laugh and chat when I walk with other people, and just maybe, I might be entering a race or two.
I'll be entering just because I can. No watch poised at the start, no eighteen nervous wee stops because 10 seconds difference over my 5k would be tragic, and no taking it for granted that I'm there and I'm doing it.
For now, that's enough info I think (!) and from now, I hope that this blog gives some light relief from those post - less than inspired training run moments - remember how far you've come! I hope it provides interest from a sciencey point of view and anyone wanting to learn about life with an illness, and most importantly to me, I hope there might be someone who can take comfort in my ramblings, if they are in some similar situation. I'd like to think that I can learn from this blog that almost anything is possible and that almost nothing is so important and serious that you can't enjoy it.
Here's to the start of a MISSION... An important, serious and enjoyable mission.
So here is me, past one in the morning, and I've taken the plunge to a world of blogging... another lighthearted pastime while I feel a tidgey bit as if my life is on hold. No screw it... my life is officially on hold in almost all respects.
Oh woe woe I hear you say... but wait - I don't mean it like that! Because with all the dramatically enriched and self involed drivvle I can possibly keep back, I'm happy to have a life to put on hold.
Backtrack to November 6th of last year where I packed my rucksack with not enough things and headed over to my CF team with a stinker of a chest infection /asthma flare up...
In I went for 2 weeks IV antibiotics ect to get rid of my 'bugs' (pseudomonas and MRSA for anyone who might wonder - very boring and same-ey CF bacteria). And on the treatment went, when after two weeks of very good treatment and improved breathing I developed 'mystery' high fevers and unexplained tiredness and weightloss.
Ho hum, thought I who, whilst slightly confused and annoyed at the imminant prolonged stay, could only see this as a blip and was pretty happy to have got my lung functions back up a bit.
As more and more things got ruled out and I had more and more tests done to get to the root of my fevers, I became rather short of breath and my gunky cough came back with avengance. Somehow although my lung functions hadn't dropped much at all at this point, I was quite worryingly hypoxic at the slightest exertion and getting more breathless by the day. A repeat chest x-ray was shocking to say the least and I appeared to have developed severe pneumonia. Which would have made sense except my bugs had settled and I had already had over two weeks of numerous antibiotics.
A CT scan was as scarey as the x-ray and after two bronchoscopys with a biopsy, I was found to have developed cryptogenic organising pneumonia, or COP. Or also called Bronchiolitis Obliterans Organising pneumonia (BOOP). I prefer the former, which is shorter, easier, and also doesn't put a lighthearted spin on a pretty evil illness. I refuse to associate cute sexy cartoon characters with extensive and life threatening lung inflammation.. but that's me and my ways.
Anyway what I'm saying is that I got really more ill than I've ever been in my entire life, had at least four instances in which I wasn't sure if I'd be around in 3 minutes let alone 3 months, and after a lengthy hospital stay and some very difficult early stages of recovery I'm still in one piece. And contemplating ways in which to get the old me back in action. Enough medical bits for now... on to some sporty stuff.
Before these past few months I was a rather keen runner and ahem... gym bunny. My fitness and ability to get out and have a whole part of my life dedicated to running was paramount to me and always will be although my priorities have changed for the time being.
I ran for my county several times in national championships, ran 10ks, 5ks, road relays, cross country, track and anywhere I could really! I would run to wake up, run to wind down, to calm my nerves for exams, to console myself after said exams, to socialise, to prove myself, and to just... run. What I love about it is that almost anyone can run, and almost everyone has different reasons for doing it. It's such a personal thing, or not if you don't want it to be, you can achieve for others, although one would hope that you end up doing it just for you.
All you need is a decent pair of shoes and you. Well in reality if this were true I would not have aquired some truly magical items which I blame running for costing me. And my boobs would be like golfballs in a pair of tights. But you don't need much is all I'm saying.
At my fittest, before a somewhat unfortunate entire year with my health, I ran a 10k in just over 40 minutes. And for me this was great, but onwards I was striving for a sub 40, and then a sub 38. Ahh, much plannage, but not much do-age... you might be thinking. But having just upped my mileage to around 40 miles a week, loads of cross training, and added circuits and weights, this was definately becoming possible.
I won't divulge in to the following few months for now but all you need to know is that this level of fitness declined for a fair spell and having fluctuated over the year, was beginning to make real progress until november.
I've heard that many things will change your priorities in regards to your goals, desires, needs, and even principles, but never truly understood how that would feel. To have a bodily function such as breathing stripped from you is a formidable experience that I wouldn't wish on anyone and I hope that no-one reading this ever really knows the feeling.
Where do I stand now with my 'fitness'? Fitness is a funny word and the meaning's changed for me almost overnight.
Before, fitness almost transpired to invincability - strength, speed, constant improvement and constant progress, never missing a work out, and never blaming anything other than myself for lack of this. It would never have meant being able to go up a flight of stairs without needing a break or a 5 minutes to catch my breath afterwards. And not needing oxygen blasting away up my nose to function. Which is why I can't bring myself to say with seriousness how fit I am. I'm now fit enough to be out of hospital and fit enough to do a bit of socialising and some quiet study (I deffered my university year). I'm fit enough to stay awake all day and to travel to my hospital appointments alone, and all this to us is remarkable progress in a couple of months.
Thankful and sentimental as I am to be 'getting there', I can't help getting some comfort in numbers and figures instead of just relying on how I feel. I currently walk at a decent (that's not brisk, it's just fast enough to appear normal and not like a human snail) pace for 30-40 minutes a day. NO oxygen... athanku avery much.
Brill, very good, but I want to run again. Like, I really want to run. Not possible for more than 30 seconds at the moment or I would do myself damage, but becoming a realiy for some future point. I can't put any sensible time frame on this because I can't even talk whilst I walk for now, but I remind myself how far I've come in the past month even, and it just seems that bit more real now that this time next year, I'll be able to not think about going upstairs without upsetting my breathing, I'll be able to laugh and chat when I walk with other people, and just maybe, I might be entering a race or two.
I'll be entering just because I can. No watch poised at the start, no eighteen nervous wee stops because 10 seconds difference over my 5k would be tragic, and no taking it for granted that I'm there and I'm doing it.
For now, that's enough info I think (!) and from now, I hope that this blog gives some light relief from those post - less than inspired training run moments - remember how far you've come! I hope it provides interest from a sciencey point of view and anyone wanting to learn about life with an illness, and most importantly to me, I hope there might be someone who can take comfort in my ramblings, if they are in some similar situation. I'd like to think that I can learn from this blog that almost anything is possible and that almost nothing is so important and serious that you can't enjoy it.
Here's to the start of a MISSION... An important, serious and enjoyable mission.
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