Today was so much better. I woke up at 7.30 a little while after IVs, did nebs and then got myself on the treadmill sharpish. And it was a really good old walk too, I did just over 2km in 20 minutes, half of it at 4% incline too! So I was chuffed with that, and knew it was going to be a better day today.
I had a sunny walk in the park after lunch, so that was another (very easy) 20 minutes, then just before dinner, I thought I'd better get on and do my hard sesh rather than have to wait hours after eating. I started off with 4 minutes at 6kph, then turned up the o2 to 10l and went on to do EIGHT, yes 8 (!) minutes at 8.2kph without stopping. I had no idea I was going to do that, as I set out to do 10 minutes total, broken in to maybe 2 fours and a final 2. But nope, I just seemed much more comfortable whilst doing it than last time and it would have felt such a shame to break it up when I felt I could do loads more. I was quite amazed after 6 minutes that I felt still relatively comfortable so I thought maybe I'd last another minute... then by focusing on maintaining my form and not hunching or leaning too much, and taking huge deep breaths in relaly sucking up the oxygen, I managed to go on till 8 minutes.
At that point I was very tired but I got my breath back quite fast just walking at 6, and after a four minute recovery, went for my next 2 minutes. It felt quite short compared, so I just had 2 minutes recovery walking, then thought why not just try for another 2 minutes? So I did!
Bloody brilliant... I can't even begin to describe how much my legs ached after but it was totally worth it! And the coughing only got to be alot right at the end whilst I did my recovery walk.
Covered just over 3km in 26 minutes, which is loads loads more than last week and I wouldn't have thought I could manage it then, especially since I'd already done a fair amount in the day.
Needless to say, totally knackered and after dinner I had the old tempy spikey come back, which meant I dozed off in bed untill about 8pm. Woops. It's come down by itself though, so I'm not entirely sure why I keep getting the little temperatures and chills in the early mornings and evenings. It's odd but I'm trying to not worry tooo much since I haven't had an actual fever and it does always go back to normal after a few hours.
Currently I'm waiting for yet another new venflon for my nighttime IVs, since this one has gone very painful and stiff. After less than two days. I'm getting so annoyed about this now. We had three attempts at a long line yesterday, no-one tried today, and here I am still running out of veins and having 4 stingy lots of medication a day through stupid little pieces of plastic that pack up and leave rock hard stringy veins in their wake. Can't wait till I get out and I can't deny that this is one of the main reasons why!
Still, it's not hindering my little joggettes so there is at least some balance between le bad and le bon.
Mummy bear is also venturing up tomorrow for much scrabble, yummy lunch and cuddles. Which will be loverry and very needed.
Well, less whinging today and hopefully even less tomorrow.
I want to do the same morning workout, then a little walk with Mum, then probably aim to do another jog session late afternoon. And then collapse, probably!
Laters xxx
Tuesday, 24 March 2009
Monday, 23 March 2009
Once spicy meatball of a bad day. Rolllll on tomorrow!
You know those days where you wake up and you know it just not gonna be a good one? Yep, today was definately one of those.
6am IVs... my venflon had completely tissued overnight and absolutely not one drop of saline would go through, so out it came.
Pissy foreign Dr comes in at 7am to put a new one in (ahahaha her again, bet she regrets last week) but not before going: "What has happened to the other one?" as if I'd DONE something to it because I'm so in love with having my veins stabbed at in the early hours. I just gave her 'the look' and went " It tissued, nothing would go through".
Stabby stabby, new venflonny number seveny... and since I've started doing my own IVs quite alot in here the nurse just handed them over and left me to it. Something was distinctly amiss though.. I felt that familiar shivery, washed out, wobbly feeling and my temp was just slightly up. So I didn't get up and do anything at all till 9am. And then didn't feel like even a walk so just washed my hair and attempted to eat something. Bleh. Lung functions were still brilliant, although that's pretty much a reassurance that my fitness is on the up and that my inflammation in the airways is normal. It doesn't really make me jump for joy anymore (ungrateful as that sounds) because I knw what's going on in my airspaces and that my gas transfer is rubbish... still, at least one thing goes my way now!
Ward round was okay since I knew they weren't going to be letting me out today. So far they aren't entirely sure what to do with me except carry on with IVs for a few more days, and see where that gets my gas transfer and see if my oxygen requirements start going down a bit. My consultant said she hoped to get me out of here by the end of the week but since they don't think I'm absorbing oral steroids and I'm apparently loads better on IV, we're a bit stuck. It seems to depend on whether my gas transfer improves at all this week, whether they can figure out a way to get me continuing to improve OFF iv steroids, and how much longer I'm going to need steroids for.
Oh the ISSUES!! She also keeps trying to gently give me a bit of a reality check over how my lungs will be in the future. Scarring issues ect ect. Like, she isn't sure my gas transfer will ever be normal, even though it'll get much better. So I'll always be more out of breath when I run ect. But that's something I'd kind of figured out anyway really.
Even so, I burst in to tears when she was saying it all because just none of it was what I want to hear. Why can't I get better off oral streroids alone?!! Why have my alveoli thickened up so much that now they'll always be less efficient?! And from that point onwards, I've officially cried on and off all day. All effing day. I hate it when you're like that... and I don't get it often.
But I just felt that way where you just can't hold it back anymore because of being so frustrated and dissapointed at it all. So I've mostly stayed in my room sulking, lol. Safer that way coz I don't want to be walking down the ward and suddenly start bubbling away!
I basically did a load of knitting, to stay relaxed and pass the time. And physio came round and was NOT going to leave without getting me on the treadmill. I explained I was feeling a bit off today and that I was just going to do a decent paced walk. So I had 20 very uneventful minutes walking, but did feel somewhat better having done it so at least I felt I'd done something constructive! 4 litres o2 to maintain sats at 91, at 6kmph, so all stable there.
I felt al chilly and weird again later so had a sleep and then a very easy 10 minutes on the treadmill, so at least I've done 30 minutes walking today. And my legs will probably feel nice and fresh tomorrow so I think I'll just write today off as one of those days, and get myself together!
Just gonna have to stick out this bit now till they figure out what to do with me lol.
Big glassy eyed apologies for the self indulgent drivle that has been todays post. Lets turn over a new leaf tomorrow I think!
Take care cheesies xxx
6am IVs... my venflon had completely tissued overnight and absolutely not one drop of saline would go through, so out it came.
Pissy foreign Dr comes in at 7am to put a new one in (ahahaha her again, bet she regrets last week) but not before going: "What has happened to the other one?" as if I'd DONE something to it because I'm so in love with having my veins stabbed at in the early hours. I just gave her 'the look' and went " It tissued, nothing would go through".
Stabby stabby, new venflonny number seveny... and since I've started doing my own IVs quite alot in here the nurse just handed them over and left me to it. Something was distinctly amiss though.. I felt that familiar shivery, washed out, wobbly feeling and my temp was just slightly up. So I didn't get up and do anything at all till 9am. And then didn't feel like even a walk so just washed my hair and attempted to eat something. Bleh. Lung functions were still brilliant, although that's pretty much a reassurance that my fitness is on the up and that my inflammation in the airways is normal. It doesn't really make me jump for joy anymore (ungrateful as that sounds) because I knw what's going on in my airspaces and that my gas transfer is rubbish... still, at least one thing goes my way now!
Ward round was okay since I knew they weren't going to be letting me out today. So far they aren't entirely sure what to do with me except carry on with IVs for a few more days, and see where that gets my gas transfer and see if my oxygen requirements start going down a bit. My consultant said she hoped to get me out of here by the end of the week but since they don't think I'm absorbing oral steroids and I'm apparently loads better on IV, we're a bit stuck. It seems to depend on whether my gas transfer improves at all this week, whether they can figure out a way to get me continuing to improve OFF iv steroids, and how much longer I'm going to need steroids for.
Oh the ISSUES!! She also keeps trying to gently give me a bit of a reality check over how my lungs will be in the future. Scarring issues ect ect. Like, she isn't sure my gas transfer will ever be normal, even though it'll get much better. So I'll always be more out of breath when I run ect. But that's something I'd kind of figured out anyway really.
Even so, I burst in to tears when she was saying it all because just none of it was what I want to hear. Why can't I get better off oral streroids alone?!! Why have my alveoli thickened up so much that now they'll always be less efficient?! And from that point onwards, I've officially cried on and off all day. All effing day. I hate it when you're like that... and I don't get it often.
But I just felt that way where you just can't hold it back anymore because of being so frustrated and dissapointed at it all. So I've mostly stayed in my room sulking, lol. Safer that way coz I don't want to be walking down the ward and suddenly start bubbling away!
I basically did a load of knitting, to stay relaxed and pass the time. And physio came round and was NOT going to leave without getting me on the treadmill. I explained I was feeling a bit off today and that I was just going to do a decent paced walk. So I had 20 very uneventful minutes walking, but did feel somewhat better having done it so at least I felt I'd done something constructive! 4 litres o2 to maintain sats at 91, at 6kmph, so all stable there.
I felt al chilly and weird again later so had a sleep and then a very easy 10 minutes on the treadmill, so at least I've done 30 minutes walking today. And my legs will probably feel nice and fresh tomorrow so I think I'll just write today off as one of those days, and get myself together!
Just gonna have to stick out this bit now till they figure out what to do with me lol.
Big glassy eyed apologies for the self indulgent drivle that has been todays post. Lets turn over a new leaf tomorrow I think!
Take care cheesies xxx
Sunday, 22 March 2009
'appy marthers day, a good one in spite of... well, myself.
Hey,
The first thing I thought about this morning when I woke up was "I hope they deliver those flowers okay and quite early" I got a call around 10.30 from the delivery man asking for directions, and they were with Mommy soon after. Phew! And it's a freaking good job they were delivered quite early because apparently the mothers day traffic was a total nightmare. 50 miles as the crow flies form our house to hospy, and it took the rents 3 hours to get here! So understandably they were frazzled when they arrived, and our lunchen in the parken was not to be untill 3pm! Lol, at least we were all ready for it!
I had my 'early' session at about 9am, and OMG did I feel the running from last night in my legs. So. much. pain. And chesty poos was pluggy and horrible for some reason. Still, I decided that since I would not be able to run on them in this way, I'd go for a walky PB instead! Covered my 2km in 20 minutes! At incline of 3-4% as well, so really not a bad little workout after all. I pretty much just whiled away the rest of the morning and chilled till Ma and Pa arrived, couldn't muster the strength to do much else really! And since it was not that warm and we were so hungry when we got to the park, we only walked for about 10 minutes in total. So at least this gave my legs a good chance at recovery before attempting to run again this evening.
7.30pm and off I toddle in to the day room, thinking of roughly 10 minutes jogging within a 30 min workout. And I managed 8 in total. Not overly rubbish but not as good as I'd hoped. My legs were just so painful and I was coughing sooo much all evening that I ended up with stomach cramps and stitch in every single interval I did. Plus the coughing was affecting my breathing rhythm which is never good.
I did manage to cover 3.4km in about 30 minutes though, all on 2-3% incline. Which isn't bad going in context, it's just frustrating when you're as impatient as moi, and you want to make more progress with every work out.
I guess I need to reassure myself that things get easier bit by bit, and THEN you increase the time/intensity. And it won't happen with every single workout either. It wouldn't when I was fast, and it won't now.
I think maybe before I keep getting ahead of myself and expecting my lungs/legs to be able to cope with longer and faster intervals all the time, I should just be positive that the intervals I have been doing are feeling that bit easier, and that running for 8 minutes a day would never have happened a month ago. It's really not that long since I could barely even have a 5 minutes shower without crashing out on my bed for half an hour afterwards.
Maybe the reason I've been getting dissapointed with it so easily is just because with the amount of 02 I'm having to do it, I expect my body to work normally with it... whereas it's just a bit more complicated than that! Just gonna be baby steps... but they're forward steps.
So in light of appreciating the fitness I HAVE got, I think I'll be fairly conservative for now, and aim for not more than 8-10 minutes of jogging everyday. Then hopefully in a week or two, this will feel much easier and I'll be comfortable to up it by another couple of minutes.
Added to this is the confusion about when I'll go home! They just don't let on much. In my mind, I'm good to go but I need the portable oxygen sorting if I'm going to be able to carry on exercising effectively. I don't want to hang around here for much longer just for the simple fact that I'm hypoxic on walking. They've said themselves it's not going to get better overnight, yet they seem to want to keep me here to see how much better things can get through having IV steroids.
I'm so annoyed that they don't see it my way! They said the x-ray had improved when I was admitted, so obviously the oral prednisolone was (if very slowly) doing it's job... and yet they're apparently so impressed with the hydrocortisone that I'm carrying on with it. But they've not said how long for, why and what they're actually wanting to see with me before they'll consider me ready to get home. I need to know what I'm aiming for otherwise how can I possibly plan ahead and plan for fitness type things when I'm out?! Hopefully they'll shed more light on it when I ask tomorrow. See what lung functions ect do... blah, blah, blah.
I'll let yas know! Take it easy guys xxx
The first thing I thought about this morning when I woke up was "I hope they deliver those flowers okay and quite early" I got a call around 10.30 from the delivery man asking for directions, and they were with Mommy soon after. Phew! And it's a freaking good job they were delivered quite early because apparently the mothers day traffic was a total nightmare. 50 miles as the crow flies form our house to hospy, and it took the rents 3 hours to get here! So understandably they were frazzled when they arrived, and our lunchen in the parken was not to be untill 3pm! Lol, at least we were all ready for it!
I had my 'early' session at about 9am, and OMG did I feel the running from last night in my legs. So. much. pain. And chesty poos was pluggy and horrible for some reason. Still, I decided that since I would not be able to run on them in this way, I'd go for a walky PB instead! Covered my 2km in 20 minutes! At incline of 3-4% as well, so really not a bad little workout after all. I pretty much just whiled away the rest of the morning and chilled till Ma and Pa arrived, couldn't muster the strength to do much else really! And since it was not that warm and we were so hungry when we got to the park, we only walked for about 10 minutes in total. So at least this gave my legs a good chance at recovery before attempting to run again this evening.
7.30pm and off I toddle in to the day room, thinking of roughly 10 minutes jogging within a 30 min workout. And I managed 8 in total. Not overly rubbish but not as good as I'd hoped. My legs were just so painful and I was coughing sooo much all evening that I ended up with stomach cramps and stitch in every single interval I did. Plus the coughing was affecting my breathing rhythm which is never good.
I did manage to cover 3.4km in about 30 minutes though, all on 2-3% incline. Which isn't bad going in context, it's just frustrating when you're as impatient as moi, and you want to make more progress with every work out.
I guess I need to reassure myself that things get easier bit by bit, and THEN you increase the time/intensity. And it won't happen with every single workout either. It wouldn't when I was fast, and it won't now.
I think maybe before I keep getting ahead of myself and expecting my lungs/legs to be able to cope with longer and faster intervals all the time, I should just be positive that the intervals I have been doing are feeling that bit easier, and that running for 8 minutes a day would never have happened a month ago. It's really not that long since I could barely even have a 5 minutes shower without crashing out on my bed for half an hour afterwards.
Maybe the reason I've been getting dissapointed with it so easily is just because with the amount of 02 I'm having to do it, I expect my body to work normally with it... whereas it's just a bit more complicated than that! Just gonna be baby steps... but they're forward steps.
So in light of appreciating the fitness I HAVE got, I think I'll be fairly conservative for now, and aim for not more than 8-10 minutes of jogging everyday. Then hopefully in a week or two, this will feel much easier and I'll be comfortable to up it by another couple of minutes.
Added to this is the confusion about when I'll go home! They just don't let on much. In my mind, I'm good to go but I need the portable oxygen sorting if I'm going to be able to carry on exercising effectively. I don't want to hang around here for much longer just for the simple fact that I'm hypoxic on walking. They've said themselves it's not going to get better overnight, yet they seem to want to keep me here to see how much better things can get through having IV steroids.
I'm so annoyed that they don't see it my way! They said the x-ray had improved when I was admitted, so obviously the oral prednisolone was (if very slowly) doing it's job... and yet they're apparently so impressed with the hydrocortisone that I'm carrying on with it. But they've not said how long for, why and what they're actually wanting to see with me before they'll consider me ready to get home. I need to know what I'm aiming for otherwise how can I possibly plan ahead and plan for fitness type things when I'm out?! Hopefully they'll shed more light on it when I ask tomorrow. See what lung functions ect do... blah, blah, blah.
I'll let yas know! Take it easy guys xxx
Saturday, 21 March 2009
Flat as a pancake... but a fluffy american one, not a crepe.
Ahem. I'm just gonna get this out in the open now... I slept in till 9.30 when I was practically shoved out of bed by the day nurses wanting to change the sheets. And it certainly didn't go unnoticed - "You're sleeping late. You're normally the first one up!" Well, at least my weekday efforts have been recognised ;-)
Thing is, I woke up at 6 when someone came in to do my IVs, but the venflon was no more, had blocked and leaked everywhere so it had to come out. And then Dr on call kindly came round for a good old stab at 7.30am. The same Doctor who told me no point in doing a long line on tuesday. Hope she was really annoyed having to do it. HarHar.
I had planned to get up around this time, once obs had been done and I finally had my morning IVs, but promptly fell back to sleep. Oh well, I guess I needed it.
So eventually I got up and very reluctantly did just 10 minutes walking on an incline of 5 to try and make the most of it, since I really didn't feel up to much. In fact, my temperature was slightly raised and I felt shivery, so this might have been why.
Still, that 10 minutes helped with clearance a tadge and it's always good to move around first thing to get this fluid moving off my limbs!
Still felt absolutely knackered and was all pale and faint, so I basically just did all my drugs and had a wash and got dressed ect, then lay on my bed dozing for the rest of the morning! Lushing it up on the weekend, I dunno.
Good thing was that come a doze/telly sesh and lunch and several teas, I felt pretty good again! And after 2pm IVs, I decided to venture oot and aboot in to the depths of Oxford street. I don't know why I do it to myself really... going on saturdays then getting really grumpy at all the other shoppers for just being there. How dare they! Still, I had a good old walk to and from the station, around Oxford street and all that, which I tried to keep going at a really brisk and important 'things to do' pace, weaving in and out of all those wanderers who were havin a faaaggg. Nice.
I did spend rather too much on some new clothes... I just really wanted some nice trendy tees and a little denim skirt. And a jumper. Ahem... Don't tell Mum and Dad.
It did cheer me up loads though and to be honest, my new clothes will benefit many on the ward since I won't have to recycle all my nice clothes as much and smell. That's my story and I'm sticking to it.
Couple of hours after dinner I did my harder session, where basically I warm up by doing 4 minutes at 6kmph on 4l O2, then ramp up the o2 to 10l and do 2 lots of 4 minutes at 8-9kmph with about 3-4 minutes walking in between and a 5 minute walk to cool down on 4l o2. So 8 minutes running today, the reason I didn't push on for a final 2 minutes was that I want to run early tomorrow since Mum and Dad are coming hopefully, for mothers day pleasantries. Can't wait to see 'em as always. We do have a good laugh together and you know when you just miss cuddles!
So I figured if I manage 3 lots of 2 minutes jogging in my early session, it doesn't matter so much if they are here when I'd normally do the session. However I'm hoping to then also do another 6 minutes in the evening. Aim for PB!!!! 12 minutes I hope! I'll see how the legs feel though. And I'll get a walk outside with the rents too.
I just hope I can get up with relative ease tomorrow! Earlier night maybe will help.
Sees yas xxx
Thing is, I woke up at 6 when someone came in to do my IVs, but the venflon was no more, had blocked and leaked everywhere so it had to come out. And then Dr on call kindly came round for a good old stab at 7.30am. The same Doctor who told me no point in doing a long line on tuesday. Hope she was really annoyed having to do it. HarHar.
I had planned to get up around this time, once obs had been done and I finally had my morning IVs, but promptly fell back to sleep. Oh well, I guess I needed it.
So eventually I got up and very reluctantly did just 10 minutes walking on an incline of 5 to try and make the most of it, since I really didn't feel up to much. In fact, my temperature was slightly raised and I felt shivery, so this might have been why.
Still, that 10 minutes helped with clearance a tadge and it's always good to move around first thing to get this fluid moving off my limbs!
Still felt absolutely knackered and was all pale and faint, so I basically just did all my drugs and had a wash and got dressed ect, then lay on my bed dozing for the rest of the morning! Lushing it up on the weekend, I dunno.
Good thing was that come a doze/telly sesh and lunch and several teas, I felt pretty good again! And after 2pm IVs, I decided to venture oot and aboot in to the depths of Oxford street. I don't know why I do it to myself really... going on saturdays then getting really grumpy at all the other shoppers for just being there. How dare they! Still, I had a good old walk to and from the station, around Oxford street and all that, which I tried to keep going at a really brisk and important 'things to do' pace, weaving in and out of all those wanderers who were havin a faaaggg. Nice.
I did spend rather too much on some new clothes... I just really wanted some nice trendy tees and a little denim skirt. And a jumper. Ahem... Don't tell Mum and Dad.
It did cheer me up loads though and to be honest, my new clothes will benefit many on the ward since I won't have to recycle all my nice clothes as much and smell. That's my story and I'm sticking to it.
Couple of hours after dinner I did my harder session, where basically I warm up by doing 4 minutes at 6kmph on 4l O2, then ramp up the o2 to 10l and do 2 lots of 4 minutes at 8-9kmph with about 3-4 minutes walking in between and a 5 minute walk to cool down on 4l o2. So 8 minutes running today, the reason I didn't push on for a final 2 minutes was that I want to run early tomorrow since Mum and Dad are coming hopefully, for mothers day pleasantries. Can't wait to see 'em as always. We do have a good laugh together and you know when you just miss cuddles!
So I figured if I manage 3 lots of 2 minutes jogging in my early session, it doesn't matter so much if they are here when I'd normally do the session. However I'm hoping to then also do another 6 minutes in the evening. Aim for PB!!!! 12 minutes I hope! I'll see how the legs feel though. And I'll get a walk outside with the rents too.
I just hope I can get up with relative ease tomorrow! Earlier night maybe will help.
Sees yas xxx
Friday, 20 March 2009
Astronauticus face maskus for thou with the rubbish alveolus
Another rollercoaster of a day here at hotel chest. I'm not totally sure what to make of it all, as usual!
First thing was good, I got up and did 20 minutes treadmilling, quite easy, to limber up for my seshho with physio later. Legs and chest felt good doing that. Just as I'd finished my drainage and nebs and about to go back on the treadmill at 11, the Dr told me to go down to RFU to do my gas transfer thingy.
And that's pretty much where my mood was set in to a bad one... the last, and only other time I'd done a gas transfer was in December when I wasn't quite at my worst, but still pretty bad. It showed the my lung 'effectiveness' if you like (the amount of oxygen you actually diffuse in to your blood from what you breathe in) to be 41%. (Quite shit)
So here's me all... well my sats at rest are dead good now and my x-rays better ect ect so it MUST have increased. And it was 37%. (More shit).
So my effective lung function, despite having regained great volume and flow, is hovering at 40%.
I guess I knew it would still be kind of low since I'm so hypoxic when I exercise... but I just really hoped I could have a better number to look at to prove that things are really improving. So I felt a bit sad, to be quite honest.
After that I came back up and started the session with Physio, who now wanted to see just how much O2 I need to maintain sats above 90 when I jog.
Answer: 10 litres. Holy moose.
And for obvious reasons, you can't have more than 5l through nasal specs, so I'll be using a mask for my running now. Just not quite as neat and discreet, I have to say. But at least my sats were good! I did 10 minutes in total, in 2 x 4 minutes, and 1 x 2 minute intervals. Even though it was knackering, it was more because of my legs being tired and not used to the running then from lactic acid build up, which I was getting straight away before.
I was still grouchy and dispondant after the result of lung function, and then to really help things along, dr came back and told me to go for a ct scan to make sure that the pneumonia wasn't flaring up (they weren't impressed with my gas transfer). Of course I knew that it wasn't, coz I know how I felt when it was there badly.
Nonetheless, it was quite good to do a CT since I could have a sneakery peakery at the images and could instantly see that it was better. Much less grey all over the place.
Later on my consultant popped in which was a surprise, to tell me the good news - she'd been over the CT with the other consultant and they were both really chuffed at the difference!! Apparently there's a load of scarring which we knew, and still some shadowing which explains my unimproved gas transfer. BUT, there is far less of the shadowing and no more consolidation which means that the pneumonia is 'there' but not active. So yeah, a good cheer up that I definately needed.
I also had my walk outide, lovely as per, and glad it was nice and sunny still when I finally got the chance to get out! So there was my 3 sessions totalling an hour all done by 5pm, so I've had the evening to relax and recover. Good stuff.
Plans for the weekenders... hrm. I'll aim to get the morning walk and mid morning run sessions done at the same times as today, then probably will go for a little wander in London to go round the shops for a bit. Just to break it up a bit because weekends are sooo quite here in Bethnal Green!
Maybeeee topshop. Hahaha. But probably only to try on stuff, complain that topshop gear 'never fits right, and is made for people with really long bodies and really teeny ribcages' conclude that H and M kids is the only place I ever find anything decent to wear, then lurk in the sweet section of Topshop and buy something I know I'll actually get some use out of.
Sounds a laff! Righto poppets, take it sneezy!
xxx
First thing was good, I got up and did 20 minutes treadmilling, quite easy, to limber up for my seshho with physio later. Legs and chest felt good doing that. Just as I'd finished my drainage and nebs and about to go back on the treadmill at 11, the Dr told me to go down to RFU to do my gas transfer thingy.
And that's pretty much where my mood was set in to a bad one... the last, and only other time I'd done a gas transfer was in December when I wasn't quite at my worst, but still pretty bad. It showed the my lung 'effectiveness' if you like (the amount of oxygen you actually diffuse in to your blood from what you breathe in) to be 41%. (Quite shit)
So here's me all... well my sats at rest are dead good now and my x-rays better ect ect so it MUST have increased. And it was 37%. (More shit).
So my effective lung function, despite having regained great volume and flow, is hovering at 40%.
I guess I knew it would still be kind of low since I'm so hypoxic when I exercise... but I just really hoped I could have a better number to look at to prove that things are really improving. So I felt a bit sad, to be quite honest.
After that I came back up and started the session with Physio, who now wanted to see just how much O2 I need to maintain sats above 90 when I jog.
Answer: 10 litres. Holy moose.
And for obvious reasons, you can't have more than 5l through nasal specs, so I'll be using a mask for my running now. Just not quite as neat and discreet, I have to say. But at least my sats were good! I did 10 minutes in total, in 2 x 4 minutes, and 1 x 2 minute intervals. Even though it was knackering, it was more because of my legs being tired and not used to the running then from lactic acid build up, which I was getting straight away before.
I was still grouchy and dispondant after the result of lung function, and then to really help things along, dr came back and told me to go for a ct scan to make sure that the pneumonia wasn't flaring up (they weren't impressed with my gas transfer). Of course I knew that it wasn't, coz I know how I felt when it was there badly.
Nonetheless, it was quite good to do a CT since I could have a sneakery peakery at the images and could instantly see that it was better. Much less grey all over the place.
Later on my consultant popped in which was a surprise, to tell me the good news - she'd been over the CT with the other consultant and they were both really chuffed at the difference!! Apparently there's a load of scarring which we knew, and still some shadowing which explains my unimproved gas transfer. BUT, there is far less of the shadowing and no more consolidation which means that the pneumonia is 'there' but not active. So yeah, a good cheer up that I definately needed.
I also had my walk outide, lovely as per, and glad it was nice and sunny still when I finally got the chance to get out! So there was my 3 sessions totalling an hour all done by 5pm, so I've had the evening to relax and recover. Good stuff.
Plans for the weekenders... hrm. I'll aim to get the morning walk and mid morning run sessions done at the same times as today, then probably will go for a little wander in London to go round the shops for a bit. Just to break it up a bit because weekends are sooo quite here in Bethnal Green!
Maybeeee topshop. Hahaha. But probably only to try on stuff, complain that topshop gear 'never fits right, and is made for people with really long bodies and really teeny ribcages' conclude that H and M kids is the only place I ever find anything decent to wear, then lurk in the sweet section of Topshop and buy something I know I'll actually get some use out of.
Sounds a laff! Righto poppets, take it sneezy!
xxx
Thursday, 19 March 2009
No freedom... yet.
Allo,
I appear, as usual, to be VERY much mistaken in my judegements. Just because when Drs and Nurses keep telling you you'll be getting out/finishing your IVs ect ect... it's quite customary to believe them. But nope, apparently the only person who I should listen to from now in is my consultant. Having not had a long line put in on monday or tuesday because the registrars kept telling me I'd only be on IVs till the end of the week, now it seems I really should have got one in to last till monday. Very grrr! So many unneccessary and painful venflons later, I'm still having IVs till monday. As planned... I wish people would get their facts right before just giving false hopes to us!
Never mind though, as all in all it was a good day and my chest is still pretty good. Mum came up and although we had to hang around for late ward rounds and an x-ray before finally getting our walk in the park, it was worth it and we did have an action packed game of scrabble while we waited. And tea and cake after... yummers.
I got up rather late compared to other days, as in 8.30! Woops... and by that time someone was already on the treamill for a bit, so I basically just decided to get up and chill out rather than my usual 2k morning sesh. Later on the physio wanted to do my oxygen levels whilst walking anyway, so I had a 10 minute brisk walk then.
I put it on 6kmph, 2% incline and started with no 02 at all just because I like to see what I'm working with. And 1-2 minutes in, sats were 78. Which is always a bit sad when they go in the 70s, especially since I was only walking. Ho hum though... at least it was a fast walk! So slipped the old nose specs back on on 3-4L, and maintained sats at about 90-92. Lovely and helpful and scarily knowledgable as the physio is, she did keep asking me loads of questions whilst I was doing it, even though she'd told me to focus on big deep breaths through the o2 pipes... so yeah, understanderbly, my sats dropped to 83 right at the end of the 10 minutes coz I was trying to talk! Waste of my valuable oxygen!
After a little natter with the Doc just after, and a quick x-ray (which I must say is a HUGE improvement on the last one I saw - just a load of scarring... but hardly any solid white chunks), we went for our 30 minute jaunt round the park and to the little cafe. And did it all fairly fast and chatting, so a good workout really.
I planned to do my little running sesh at about 8.30pm to allow food to go down... then had a teeny temperature spike so fell asleep untill that time, when someone else went on the treadmill for a while, so I kind of hung around till about 9.45 to do it. I did 3 minutes brisk walk, 2 minutes jogging, another 3 minutes walking, another 2minutes jogging, then 6 minutes walking to cool down. So only 4 minutes jogging tonight... short and sweet. However, the physio is coming at 11am tomorrow for my session, where I want to do 10 minutes, so at least my legs won't be too tired. I'll do 20 minutes first thing to stretch them out a bit first and make sure I'm awake!
And I mean it... finished by 8am latest to ensure that I actually get on it, and that I'm recovered in time for the big one! I think I'll try and push really hard for the running bits, as I really want to get that 10 minutes again. I'll have to see what my sats do and how tolerant of low sats the physio remains! Then to the park if it's nice... will be in order.
So... more IVs, more IV steroids (boooo) and then a firm "We'll talk" on monday. I shall let you know how my sesh went... oh the excitement.
xxx
I appear, as usual, to be VERY much mistaken in my judegements. Just because when Drs and Nurses keep telling you you'll be getting out/finishing your IVs ect ect... it's quite customary to believe them. But nope, apparently the only person who I should listen to from now in is my consultant. Having not had a long line put in on monday or tuesday because the registrars kept telling me I'd only be on IVs till the end of the week, now it seems I really should have got one in to last till monday. Very grrr! So many unneccessary and painful venflons later, I'm still having IVs till monday. As planned... I wish people would get their facts right before just giving false hopes to us!
Never mind though, as all in all it was a good day and my chest is still pretty good. Mum came up and although we had to hang around for late ward rounds and an x-ray before finally getting our walk in the park, it was worth it and we did have an action packed game of scrabble while we waited. And tea and cake after... yummers.
I got up rather late compared to other days, as in 8.30! Woops... and by that time someone was already on the treamill for a bit, so I basically just decided to get up and chill out rather than my usual 2k morning sesh. Later on the physio wanted to do my oxygen levels whilst walking anyway, so I had a 10 minute brisk walk then.
I put it on 6kmph, 2% incline and started with no 02 at all just because I like to see what I'm working with. And 1-2 minutes in, sats were 78. Which is always a bit sad when they go in the 70s, especially since I was only walking. Ho hum though... at least it was a fast walk! So slipped the old nose specs back on on 3-4L, and maintained sats at about 90-92. Lovely and helpful and scarily knowledgable as the physio is, she did keep asking me loads of questions whilst I was doing it, even though she'd told me to focus on big deep breaths through the o2 pipes... so yeah, understanderbly, my sats dropped to 83 right at the end of the 10 minutes coz I was trying to talk! Waste of my valuable oxygen!
After a little natter with the Doc just after, and a quick x-ray (which I must say is a HUGE improvement on the last one I saw - just a load of scarring... but hardly any solid white chunks), we went for our 30 minute jaunt round the park and to the little cafe. And did it all fairly fast and chatting, so a good workout really.
I planned to do my little running sesh at about 8.30pm to allow food to go down... then had a teeny temperature spike so fell asleep untill that time, when someone else went on the treadmill for a while, so I kind of hung around till about 9.45 to do it. I did 3 minutes brisk walk, 2 minutes jogging, another 3 minutes walking, another 2minutes jogging, then 6 minutes walking to cool down. So only 4 minutes jogging tonight... short and sweet. However, the physio is coming at 11am tomorrow for my session, where I want to do 10 minutes, so at least my legs won't be too tired. I'll do 20 minutes first thing to stretch them out a bit first and make sure I'm awake!
And I mean it... finished by 8am latest to ensure that I actually get on it, and that I'm recovered in time for the big one! I think I'll try and push really hard for the running bits, as I really want to get that 10 minutes again. I'll have to see what my sats do and how tolerant of low sats the physio remains! Then to the park if it's nice... will be in order.
So... more IVs, more IV steroids (boooo) and then a firm "We'll talk" on monday. I shall let you know how my sesh went... oh the excitement.
xxx
Wednesday, 18 March 2009
It was a day of recovery. Sunny recovery though ;-)
Hola,
Well, as predictimondo, my legs remained pretty tired and achey from the massive increase in erm... my using them over the past few days. Which is fine, it means I'm getting WORKOUTS!! Not physiotherapy... workouts. Ha. So I basically got up early (7) first and foremost to wash my locks before the severe drought that was to be in Caplin. Then on to business - a 21 minute walk on the treaders covering 2km. So a PB of late, since it's normally been taking me about 24 minutes to cover the 2k. AND I did it at 3% incline so nerrr. The legs kind of held out but I pretty much could tell that today was not going to be a running day lol.
Instead, I decided to just go to the park after lunch and do 2 laps at a decent enough pace (no O2 remember!) for a 40 minute 'sesh'. So I'v still done an hour's walking today, much more than I would have been doing a few weeks back and this was an 'easy' day!
Other than the two walks I've been totally knackered feeling all day... not in an ill sort of way, just because of doing loads but that's ace anyway because I've pretty much got most of the day to do these self indulgent exercise, rest, eat, repeat type cycles in here. Passes the time nicely.
And I reckon just the whole thing of being in the ward makes you feel a bit jaded too, coz it's just not home! The waterpipe crisis was not too bad like I thought it would be... and I got to have a little recky of rivierer ward too. It's shite! Well old fashioned and not as clean looking as caplin... and the staff were giving me the eye for walking in... as if they hadn't been told people from caplin would be using the loos...tsk tsk. Glad I'm over here in the posh unit even if we do have momentary water shortages!
Chest wise, I'm doing well still, I'm coughing away but it's turned in to more of a dry, loose tickly sort of cough not all tight and gluggy. My sats are totally awesome at rest still, like I've been getting 98!! I mean that's bloody good. It's just the old overnight and exercise thingy where they drop away to the 80s. Ah... I'm a child of the 80s and I can't hide it! I've been doing all my sessions alone so no pulse oximetre of late, but I imagine I'll be sticking with the same 02 requirements for a little while - 3-4 litres for exertion and 1 litre overnight. S'all good though. I reckon come the day where I take the old portable cyclinder out for a proper run, people will think I'm some astronaut in training or something. Cooool.
I'm really hoping they take me back off hydrocortisone tomorrow and maybe even finish IVs and get out before the weekend... I don't think there's anything else that can be achieved with more antibiotics now since my infection levels are totally stamped now. And you guessed it, I still hate IV steroids!! My weight is a joke - 44 this morning, 46.3 this afternoon, and then probably somewhere in between now. Proper yo-yo-er me. I can feel it when I'm bloating out - my fingers are all puffy and my shoes feel tight lol!
My loverly Mum is coming up tomorrow, which is always fabby. Totally breaks up the time when we can have loads of chats and cuddles and dinner at the nice veggie restaurant!
Exercise for tomorrow... I think today will have done my legs a world of good to get over the past few days, so I think I'll go for 10 minutes jogging again. And the usual 40-50 minutes walking. Bring it onnnn xxx
Well, as predictimondo, my legs remained pretty tired and achey from the massive increase in erm... my using them over the past few days. Which is fine, it means I'm getting WORKOUTS!! Not physiotherapy... workouts. Ha. So I basically got up early (7) first and foremost to wash my locks before the severe drought that was to be in Caplin. Then on to business - a 21 minute walk on the treaders covering 2km. So a PB of late, since it's normally been taking me about 24 minutes to cover the 2k. AND I did it at 3% incline so nerrr. The legs kind of held out but I pretty much could tell that today was not going to be a running day lol.
Instead, I decided to just go to the park after lunch and do 2 laps at a decent enough pace (no O2 remember!) for a 40 minute 'sesh'. So I'v still done an hour's walking today, much more than I would have been doing a few weeks back and this was an 'easy' day!
Other than the two walks I've been totally knackered feeling all day... not in an ill sort of way, just because of doing loads but that's ace anyway because I've pretty much got most of the day to do these self indulgent exercise, rest, eat, repeat type cycles in here. Passes the time nicely.
And I reckon just the whole thing of being in the ward makes you feel a bit jaded too, coz it's just not home! The waterpipe crisis was not too bad like I thought it would be... and I got to have a little recky of rivierer ward too. It's shite! Well old fashioned and not as clean looking as caplin... and the staff were giving me the eye for walking in... as if they hadn't been told people from caplin would be using the loos...tsk tsk. Glad I'm over here in the posh unit even if we do have momentary water shortages!
Chest wise, I'm doing well still, I'm coughing away but it's turned in to more of a dry, loose tickly sort of cough not all tight and gluggy. My sats are totally awesome at rest still, like I've been getting 98!! I mean that's bloody good. It's just the old overnight and exercise thingy where they drop away to the 80s. Ah... I'm a child of the 80s and I can't hide it! I've been doing all my sessions alone so no pulse oximetre of late, but I imagine I'll be sticking with the same 02 requirements for a little while - 3-4 litres for exertion and 1 litre overnight. S'all good though. I reckon come the day where I take the old portable cyclinder out for a proper run, people will think I'm some astronaut in training or something. Cooool.
I'm really hoping they take me back off hydrocortisone tomorrow and maybe even finish IVs and get out before the weekend... I don't think there's anything else that can be achieved with more antibiotics now since my infection levels are totally stamped now. And you guessed it, I still hate IV steroids!! My weight is a joke - 44 this morning, 46.3 this afternoon, and then probably somewhere in between now. Proper yo-yo-er me. I can feel it when I'm bloating out - my fingers are all puffy and my shoes feel tight lol!
My loverly Mum is coming up tomorrow, which is always fabby. Totally breaks up the time when we can have loads of chats and cuddles and dinner at the nice veggie restaurant!
Exercise for tomorrow... I think today will have done my legs a world of good to get over the past few days, so I think I'll go for 10 minutes jogging again. And the usual 40-50 minutes walking. Bring it onnnn xxx
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