Started my IVs yesterday. I was supposed to be going on colomycin and aztreonam, however because so many patients have started IVs this month the drug company, Calea have run out of aztreonam. Seriously! So I had a choice of either going on meropenem which I hate as it makes me feel like I am dying or ceftazidime which I haven't had for at least five years as it gives me headaches. I went for the ceftaz, I am having 2g three times a day rather than 3g twice a day which is the usual dose they give. Hopefully I won't get headaches!
Calea decided that because they had run out of azteonam they wouldn't tell the hospital and just provide me with colomycin. So when they called and confirmed the order to me, I asked them where the aztreonam was! Anyway the hospital then couldn't order the ceftaz until the day after as there is a cut off time, so I had a delivery of everything minus the ceftaz yesterday and then had a delivery of ceftaz today. This meant when I started my IVs yesterday I had to have the ceftaz dose as a bolus injection (through a syringe manually). I also had to have my first two doses at the hospital because I haven't had it for such a long time, incase of any reactions. Therefore I had the joy of making a trip there at 9pm last night.
Also I'd like to point out that I had forgotten how much ceftaz stinks. Have you ever smelt cat wee? That is how ceftaz smells, it is rank. It makes your wee smell the same and also it seems to even make your sweat smell of it! When I was doing my first dose, I swear I could taste it in my mouth! So if any of you see me in the next 2 weeks and I smell, you will know why!
Today has been joyful so far, colomycin is affecting my balance and concentration, hopefully it will wear off after a few days. I'm finding it difficult to type and pick stuff up etc, I've cancelled going shopping with my mum as I don't fancy walking around in a floaty kind of way, plus I am feeling sorry for myself and that affects your energy, infact I can't be bothered to do anything. I might try to go the the gym later, will see how it goes...
Wednesday, 27 January 2010
Monday, 25 January 2010
Heading Towards a Bad Place
I'm feeling really down today. The past week I've started feeling rubbish again, tired, aching, getting breathless easily, chest pains and sleeping in quite late. I had outpatients today and my lung function is back down at 36%, my weight is up abit at 54.5kg. So I am starting IV's tomorrow, this means I will be on IVs for my birthday and my night out I had planned.
I'm just sick of everything to be honest, I feel like no matter how hard I try it doesn't help. I'm seriously considering cancelling my gym membership, I feel the money could be used elsewhere and it's not like it seems to be helping.
It's like I never get a break, it's just one thing after another. My constipation is becoming an issue again and yesterday evening I had really bad pains just under my chest, I seriously felt like I was dying. I think it was trapped wind so nothing serious but it was so painful, I couldn't even stand up straight.
Petes parents came over yesterday and I cooked a Sunday lunch, after they left I felt so tired, my whole body ached and I just had no energy whatsoever. It was a real push to force myself to do my physio, to be honest I don't think I put that much effort into it. My point is, a normal person wouldn't be this knackered after cooking a Sunday lunch and having some guests over would they? I hate it, why can't I just be normal for awhile?
I even got mad at Coronation street the other day. For those of you that don't watch it (its a soap to you non Uk people reading this), Sally Webster got breast cancer. She had to have a lump removed and then was told she was going to be fine apart from needing some tablets and radiation I think they said. So basically she had about 5 weeks of worry, an operation and as far as we know is going to be fine, she didn't even feel ill because they caught it early. Then all they keep going on about is that she deserves a holiday and is brave, deserves a break bla bla. I know its not real, but this is how people think.
What about people like me and others with continuous, long-term illnesses? Where is our break? We put up with sh!t like that all the time, there is no break for us, no good news, no holiday to celebrate. Our lives are a constant worry. I'm not saying cancer isn't terrible, of course it is terrible and I feel guilty for even having these thoughts, I'd never wish it upon anyone. However it's always cancer that gets the limelight, if someone gets cancer its horrible, lets find a cure for cancer, raise awareness for cancer, be nice to people with cancer, set up charities for them. I heard on the radio the other day that a local charity had been set up to help cancer survivors get on with normal life. I wish I could survive CF and have someone help me get on with a normal life. No wait, just a normal life would be a start...
I don't like been this person I become when I'm feeling rough, and I feel terrible for complaining as there are loads of people more unhealthy than me. But perhaps there are even more that are healthier?
Wednesday, 20 January 2010
Catching Up
I'm glad the weather is getting slightly warmer, I've taken Alfie for three walks since I last blogged, so getting out more now. Its all muddy because of the melted ice/snow so poor Alfie has to be washed after every walk, which he doesn't enjoy very much! But at least he is getting walked! It was so busy around the lake on Sunday, I guess everyone feels the same, they want to get out of the house, it's like a new found freedom! The lake is still frozen over, all the ducks walk across it showing off. It's so unfair they get to have all the fun!!
I really enjoyed yoga this Monday, maybe I am getting better at it? The hour went really fast and I didn't feel as achy the day after. I might start going with my friend who I met up with today, she is a member at the gym so said she might join me next week if she is not working.
I haven't seen this particular friend for years, we used to be best friends at school, inseparable at one point. Things change though, she went to a different college to me, then university and then went travelling. So I haven't seen her for years! I was quite nervous about meeting her, you never know how people are going to have changed. However as soon as we met up it was like we'd never been apart, I forgot how great she is and was sad to find out she is going away again in March. Anyway we had a good natter for 4 hours and caught up on everything, it's weird how you can not see someone for years and then totally feel comfortable with them again in about 5 minutes! We first met in year 7 in the practise fire assembly as my surname was Harrison and hers is Harris and we had to stand in Alphabetical order, we couldn't decide who should go first! Clearly it was her but at the time it was confusing for some reason! I love catching up with old friends, so had a really nice afternoon.
The mortgage stuff is still getting sorted, I don't know why it takes so long. The estate agents keep calling us trying to move it along but there is not much we can do! We are going to meet the mortgage advisor tomorrow to discuss life insurance etc, should be an interesting conversation since I doubt anyone would want to insure me! I have trouble getting travel insurance, never mind life cover!
I really enjoyed yoga this Monday, maybe I am getting better at it? The hour went really fast and I didn't feel as achy the day after. I might start going with my friend who I met up with today, she is a member at the gym so said she might join me next week if she is not working.
I haven't seen this particular friend for years, we used to be best friends at school, inseparable at one point. Things change though, she went to a different college to me, then university and then went travelling. So I haven't seen her for years! I was quite nervous about meeting her, you never know how people are going to have changed. However as soon as we met up it was like we'd never been apart, I forgot how great she is and was sad to find out she is going away again in March. Anyway we had a good natter for 4 hours and caught up on everything, it's weird how you can not see someone for years and then totally feel comfortable with them again in about 5 minutes! We first met in year 7 in the practise fire assembly as my surname was Harrison and hers is Harris and we had to stand in Alphabetical order, we couldn't decide who should go first! Clearly it was her but at the time it was confusing for some reason! I love catching up with old friends, so had a really nice afternoon.
The mortgage stuff is still getting sorted, I don't know why it takes so long. The estate agents keep calling us trying to move it along but there is not much we can do! We are going to meet the mortgage advisor tomorrow to discuss life insurance etc, should be an interesting conversation since I doubt anyone would want to insure me! I have trouble getting travel insurance, never mind life cover!
Friday, 15 January 2010
Google searches that bring up my blog!
The website I use to count how many times my blog has been viewed also shows what searches people have used to click on my blog. Some of them are so funny! Some I am slightly concerned about and some I am confused as to why they bring up my blog! Anyway I hope my blog helped them somehow... here are my favourite ones, enjoy!
- keep on getting me high so high ...we get so ... And I get so high I just can't feel i...And I get
- should one spit in the sink
- why does my chihuahua yawn at me when im talking to her
- why do i bring up green phlegm and have a bad taste in my mouthall the time?
- christmas in living room blogspot
- lung - abit rattly
- I broke out in sores after the Swine Flu Jag
- what happened when you spit in the sink?
- i was feeling sick and i went to hospital for a check up the nurse give me about 50 needles in my body
- Cipro blurgh
- CF army on me hand signal
- i get flu all the time is it because im underweight
- I have a confession to make. Actually I have a couple. But first off i'll state that I'm alright, everything's going to be fine. I took a minor overdose of co-codamol yesterday
- can drinking scandishake be harmful
- nutrizym in egypt
- swimming following swine flu jab
Thursday, 14 January 2010
Murder by Yoga
I'm quite fed up at the moment, I don't seem to have much to do!
I love the snow but it means I can't take Alfie out, even if I do its a 15 minute job just around town so not very scenic or peaceful. I might actually try go somewhere today because it's abit warmer, about 1-2 degrees now whereas the past week or so its been freezing or below. No matter how many layers I put on I still seem to feel cold! Alfie also gets cold even with his coat on, he needs some boots or something!! So we have mainly been hibernating and watching my Tudors dvds that I got for Christmas.
The purchase of the property is moving on now, the mortgage guy has told us we have the mortgage subject to the valuation etc so that's good. Apparently they need to manually check it because of my benefits but he doesn't think this will cause a problem, lets hope so!! I have been eying things up in shops I want like curtains and rugs, just need to save some money up! Which leads onto he fact I am trying not to spend any money so I can save up, hence why I am also bored!
I had to fill in a tax returns form because I work at my mums barber shop each week (I am classed as self employed). I could swear the advert says tax doesn't have to taxing. Well since I couldn't log into the damn thing, that made it more difficult! I phoned them up and ended up getting very annoyed with the 'helpline' man as he was not very helpful atall and keep asking me why stuff wouldn't be working, why would I know?! That's why I am ringing him! After having a go at him he actually started to be abit more helpful and we established I had locked my self out, but rather than telling me this it was telling me I didn't exist! Stupid thing.
I eventually got in and filled it in, I also have to put in my incapacity benefit as it can be taxed (but the first 28 weeks don't get taxed), I don't think from reading the booklet that disability living allowance is taxable. Anyway, if I have filled it in right which I highly doubt I have done, then they owe me some money. Bonus!
I swear the woman at Yoga is trying to kill me. I've started going on a Monday instead and I think the other people may be more advanced because it seems to be more fast paced and it makes me get so out of breath! She gets us to breathe in and out really slowly over a few seconds whilst doing the yoga positions, seriously she is trying to kill me! I also ache the day after, I do not think I am very flexible! It's all good for me but hard work. She taught us last week a way to breathe to try get air into all parts of our lungs, she said it helps increase lung capacity. Bing! My ears pricked up! Basically the three parts of your lungs each need to be focused on, so you breath into your lower lungs first for 1 second, then your middle for 1 second then upper for 1 second. She taught us how to feel our chest so we know we are getting the right parts. Then when you breathe out you do the same, breathe out of lower first for one second, then middle then upper. Then you increase the seconds if you can. In the class she had us going up to 3 seconds per section of the lung, I sometimes managed 2 seconds per section of the lung (so 6 seconds breathing in) if I was lucky!
I decided to try this when doing my acapella, it doesn't work when doing it breathing out however it does work when breathing in, it seems to make sure it gets air to all of your lungs before you blow out. I seem to be shifting more mucus anyway!
I am actually very mad at the gym I go to. When I went on Monday to the yoga all the disabled spaces were taken. There are maybe 30 or more disabled spaces so you would think I would get one! But no they were all full so I had to park by the entrance (the drop off point) as I refused to park at the back of the carpark. I complained to the lady at reception and queried if anyone checked as most of the cars I saw had no disabled sticker. She said 'well it's because of the snow and ice, people want to park closer', can you believe that?! She was actually saying it was OK to do! I told her that I was actually disabled and couldn't find a space and when it snows, people who are disabled need the spaces even more and don't just disappear for others convenience! She said she would have a word with the manager but I doubt she did so I'm going to make a proper complaint as I don't think it's acceptable. They should be clearing the carpark so this doesn't happen and also put signs up reminding people that snow doesn't make them disabled! Or/And get someone to give out the fines they 'claim' to give out if you park in a disabled space without a sticker.
I love the snow but it means I can't take Alfie out, even if I do its a 15 minute job just around town so not very scenic or peaceful. I might actually try go somewhere today because it's abit warmer, about 1-2 degrees now whereas the past week or so its been freezing or below. No matter how many layers I put on I still seem to feel cold! Alfie also gets cold even with his coat on, he needs some boots or something!! So we have mainly been hibernating and watching my Tudors dvds that I got for Christmas.
The purchase of the property is moving on now, the mortgage guy has told us we have the mortgage subject to the valuation etc so that's good. Apparently they need to manually check it because of my benefits but he doesn't think this will cause a problem, lets hope so!! I have been eying things up in shops I want like curtains and rugs, just need to save some money up! Which leads onto he fact I am trying not to spend any money so I can save up, hence why I am also bored!
I had to fill in a tax returns form because I work at my mums barber shop each week (I am classed as self employed). I could swear the advert says tax doesn't have to taxing. Well since I couldn't log into the damn thing, that made it more difficult! I phoned them up and ended up getting very annoyed with the 'helpline' man as he was not very helpful atall and keep asking me why stuff wouldn't be working, why would I know?! That's why I am ringing him! After having a go at him he actually started to be abit more helpful and we established I had locked my self out, but rather than telling me this it was telling me I didn't exist! Stupid thing.
I eventually got in and filled it in, I also have to put in my incapacity benefit as it can be taxed (but the first 28 weeks don't get taxed), I don't think from reading the booklet that disability living allowance is taxable. Anyway, if I have filled it in right which I highly doubt I have done, then they owe me some money. Bonus!
I swear the woman at Yoga is trying to kill me. I've started going on a Monday instead and I think the other people may be more advanced because it seems to be more fast paced and it makes me get so out of breath! She gets us to breathe in and out really slowly over a few seconds whilst doing the yoga positions, seriously she is trying to kill me! I also ache the day after, I do not think I am very flexible! It's all good for me but hard work. She taught us last week a way to breathe to try get air into all parts of our lungs, she said it helps increase lung capacity. Bing! My ears pricked up! Basically the three parts of your lungs each need to be focused on, so you breath into your lower lungs first for 1 second, then your middle for 1 second then upper for 1 second. She taught us how to feel our chest so we know we are getting the right parts. Then when you breathe out you do the same, breathe out of lower first for one second, then middle then upper. Then you increase the seconds if you can. In the class she had us going up to 3 seconds per section of the lung, I sometimes managed 2 seconds per section of the lung (so 6 seconds breathing in) if I was lucky!
I decided to try this when doing my acapella, it doesn't work when doing it breathing out however it does work when breathing in, it seems to make sure it gets air to all of your lungs before you blow out. I seem to be shifting more mucus anyway!
I am actually very mad at the gym I go to. When I went on Monday to the yoga all the disabled spaces were taken. There are maybe 30 or more disabled spaces so you would think I would get one! But no they were all full so I had to park by the entrance (the drop off point) as I refused to park at the back of the carpark. I complained to the lady at reception and queried if anyone checked as most of the cars I saw had no disabled sticker. She said 'well it's because of the snow and ice, people want to park closer', can you believe that?! She was actually saying it was OK to do! I told her that I was actually disabled and couldn't find a space and when it snows, people who are disabled need the spaces even more and don't just disappear for others convenience! She said she would have a word with the manager but I doubt she did so I'm going to make a proper complaint as I don't think it's acceptable. They should be clearing the carpark so this doesn't happen and also put signs up reminding people that snow doesn't make them disabled! Or/And get someone to give out the fines they 'claim' to give out if you park in a disabled space without a sticker.
Wednesday, 13 January 2010
A Fighter to the End
I'm very sad to say that Jess who received her transplant between Christmas and New Year has passed away.
This is not the way her Christmas Miracle was supposed to go, yet she was so very poorly and weak, she had waited for her transplant for too long. If she had received it earlier who knows? Not all transplants are successful, it's a risky procedure. However I think that every single time it is still better to at least give someone the chance. Been on the list gives that person hope to continue fighting, a future to look forward to.
Jess was such a fighter, this is a picture from a sponsored walk she did in 2009. Even in her last days she was determined to raise awareness of organ donation. Hopefully her efforts were not in vain. Please click here to join the organ donation register.
I didn't know Jess that well, however I followed her progress and she helped me with my cf presentation last year. She was well known on the cf forums and was a major advocate for the Live Life Then Give Life charity, she will be greatly missed. RIP Jess xx
This is not the way her Christmas Miracle was supposed to go, yet she was so very poorly and weak, she had waited for her transplant for too long. If she had received it earlier who knows? Not all transplants are successful, it's a risky procedure. However I think that every single time it is still better to at least give someone the chance. Been on the list gives that person hope to continue fighting, a future to look forward to.
Jess was such a fighter, this is a picture from a sponsored walk she did in 2009. Even in her last days she was determined to raise awareness of organ donation. Hopefully her efforts were not in vain. Please click here to join the organ donation register.
I didn't know Jess that well, however I followed her progress and she helped me with my cf presentation last year. She was well known on the cf forums and was a major advocate for the Live Life Then Give Life charity, she will be greatly missed. RIP Jess xx
Monday, 11 January 2010
Compliance over the Christmas period!
Over Christmas and New Year I didn't miss any treatments, physio etc. I haven't included tablets in this as I find them quite easy, I just take them sometime in the morning and then before I go to bed. Regardless of how drunk or tired I am. So here's how I did my physio and nebs:
Christmas Eve - We went to church at 4pm and then were getting picked up for my Nana's party between 5-6pm. So as soon as I got home from church I did my evening physio and pulmozyme. I then did my evening tobi when I got home from my Nana's, doing your tobi when drunk makes it much more fun.....
Christmas Day - We had to be at my dad's for 10.30am so we got up at quarter to 8 to make sure we had time to open presents, get ready and for me to do my physio and tobi neb. Then when we went to my mums and I took my physio and neb stuff along with me. We didn't finish out Christmas dinner until about 5pm and then wanted to get to my aunties. I had to wait awhile to let my food settle, then did my physio and pulmozyme neb whilst everyone else was playing on band hero. I was really jealous they were having fun and I was stuck doing my stupid physio, but needs must and all that! Then we had to wait an hour for me to do my tobi (if done within an hour of pulmozyme, the tobi stops the pulmozyme working). This meant we were late to my aunties but least it meant I got my treatments done.
Boxing Day - This was quite difficult to plan. We went for chinese at 5pm and then went to my aunties afterwards. This meant I could not do my evening physio before we left as it would have been too early, I would have had to do it about 3pm! So what I did is do my pulmozyme at home and then took my physio stuff and tobi with me in the car. I figured the tobi was OK in the boot of the car as it was at least 0 degrees outside so cool enough to not be in the fridge! Once we got to me aunties I put the tobi in her fridge (could have left it in the car though). After about an hour of been there, Pete and I went upstairs and I did my physio in one of the bedrooms and my tobi neb. I didn't wash all the stuff, I planned to wash it when I got home. Pete didn't have to go upstairs with me, but it's nice to have some company when you are going to be there for about 20-30 minutes!
We got a taxi home and I left my stuff in the taxi! Panic! I didn't realise when we first got in and was putting other stuff in the steriliser then wondered where my acapella and tobi chamber was. Luckily the taxi firm decided it wasn't worth keeping and Pete went to pick it up the next day. Phew!!!
Visiting the In laws - The Thursday-Friday between Christmas Day and New Years Day we went to see Pete's family and stayed over. With regards to tablets I just take what I will need in one pot, I know what all my tablets are and don't need to split them in to days. I know what I take and when. I did my morning physio and tobi neb before we left and then I did my evening physio and pulmozyme neb in a separate room. Pete came with me for some company again. Again I put my pulmozyme and tobi in the boot whilst we drove over, to keep it cool and then it went in their fridge. Pete got me a clean towel from the cupboard to put everything on to dry once I had washed it. I then did my evening tobi neb whilst we were watching a film, I'm not bothered about doing my nebs infront of Petes family.
The next morning I did my physio and tobi neb in the bedroom we stayed in after we'd had breakfast, and then we were home for my evening physio which I did earlier than usual because it was New Years Eve.
New Years Eve and Day - New Years Eve I just did my physio and pulmozyme abit earlier than usual then I did my tobi when we came home that night. Again, I was very drunk and surprised I even managed to put it together. I was shortly sick afterwards so not sure if the tobi neb contributed to this, however I think the alcohol was the most likely culprit...!
On New Years Day I did my morning physio in our bedroom as my friend and Pete's friend had stayed over and I don't like doing it infront of them. I knew they could hear me, but as long as they don't see me I'm not bothered! I did my tobi neb infront of them, that doesn't bother me.
So you see, all it requires is abit of planning and some will power! I'll continue to go through days as they occur when it's more difficult than usual to be compliant, for example when we go on holiday, social activies interfere etc.
Christmas Eve - We went to church at 4pm and then were getting picked up for my Nana's party between 5-6pm. So as soon as I got home from church I did my evening physio and pulmozyme. I then did my evening tobi when I got home from my Nana's, doing your tobi when drunk makes it much more fun.....
Christmas Day - We had to be at my dad's for 10.30am so we got up at quarter to 8 to make sure we had time to open presents, get ready and for me to do my physio and tobi neb. Then when we went to my mums and I took my physio and neb stuff along with me. We didn't finish out Christmas dinner until about 5pm and then wanted to get to my aunties. I had to wait awhile to let my food settle, then did my physio and pulmozyme neb whilst everyone else was playing on band hero. I was really jealous they were having fun and I was stuck doing my stupid physio, but needs must and all that! Then we had to wait an hour for me to do my tobi (if done within an hour of pulmozyme, the tobi stops the pulmozyme working). This meant we were late to my aunties but least it meant I got my treatments done.
Boxing Day - This was quite difficult to plan. We went for chinese at 5pm and then went to my aunties afterwards. This meant I could not do my evening physio before we left as it would have been too early, I would have had to do it about 3pm! So what I did is do my pulmozyme at home and then took my physio stuff and tobi with me in the car. I figured the tobi was OK in the boot of the car as it was at least 0 degrees outside so cool enough to not be in the fridge! Once we got to me aunties I put the tobi in her fridge (could have left it in the car though). After about an hour of been there, Pete and I went upstairs and I did my physio in one of the bedrooms and my tobi neb. I didn't wash all the stuff, I planned to wash it when I got home. Pete didn't have to go upstairs with me, but it's nice to have some company when you are going to be there for about 20-30 minutes!
We got a taxi home and I left my stuff in the taxi! Panic! I didn't realise when we first got in and was putting other stuff in the steriliser then wondered where my acapella and tobi chamber was. Luckily the taxi firm decided it wasn't worth keeping and Pete went to pick it up the next day. Phew!!!
Visiting the In laws - The Thursday-Friday between Christmas Day and New Years Day we went to see Pete's family and stayed over. With regards to tablets I just take what I will need in one pot, I know what all my tablets are and don't need to split them in to days. I know what I take and when. I did my morning physio and tobi neb before we left and then I did my evening physio and pulmozyme neb in a separate room. Pete came with me for some company again. Again I put my pulmozyme and tobi in the boot whilst we drove over, to keep it cool and then it went in their fridge. Pete got me a clean towel from the cupboard to put everything on to dry once I had washed it. I then did my evening tobi neb whilst we were watching a film, I'm not bothered about doing my nebs infront of Petes family.
The next morning I did my physio and tobi neb in the bedroom we stayed in after we'd had breakfast, and then we were home for my evening physio which I did earlier than usual because it was New Years Eve.
New Years Eve and Day - New Years Eve I just did my physio and pulmozyme abit earlier than usual then I did my tobi when we came home that night. Again, I was very drunk and surprised I even managed to put it together. I was shortly sick afterwards so not sure if the tobi neb contributed to this, however I think the alcohol was the most likely culprit...!
On New Years Day I did my morning physio in our bedroom as my friend and Pete's friend had stayed over and I don't like doing it infront of them. I knew they could hear me, but as long as they don't see me I'm not bothered! I did my tobi neb infront of them, that doesn't bother me.
So you see, all it requires is abit of planning and some will power! I'll continue to go through days as they occur when it's more difficult than usual to be compliant, for example when we go on holiday, social activies interfere etc.
Wednesday, 6 January 2010
White Winter
It snowed quite heavily yesterday although nothing compared to Scotland I believe, I think we got about 20cm of snow. It took us 2 hours to get to my mums, it usually takes about 15 minutes! The main roads out of where I live had not been gritted, infact the gritter went past after we had queued on a road for over half an hour at 9am, too late if you ask me! The reason for the queue is that at the end of a road there is a slope and basically people couldn't get up it, there were loads parked on the side that had given in. Pete and I got quite worried as because the traffic was so slow we kept having to start and stop, not great when you know your car is going to struggle! We did manage it but only just! Go mini!!!! The motorway was fine, but that's no good if it takes an hour to get onto it!
Because it took so long to get to my mums we then stayed there all day, Pete couldn't go do his jury service (he's not actually been assigned to a case yet so wasn't necessary he went in) as all trains were cancelled so we played on band hero and had a roast. Good times!
The snow is providing some fun for Alfie, it is up to his chin and there are all these trails in the garden where he has been which he now uses to get around. I've videoed it for you, I can't upload it for some reason so put it on youtube, click here to watch it. I don't know how to add youtube videos onto my blog properly, someone please teach me!
Edit - thanks Tori! xx
Monday, 4 January 2010
Compliance
Over 2009 I have become very compliant with my CF treatment, it was part of my aim to reach fev1 of 60% which never happened but at least I tried!
I was thinking how compliant I had actually been and I think I have only missed 3 physio sessions out of 730 (since I do physio twice a day). These were a) on my wedding day, I only did physio in the morning b) coming home from Thailand due to time differences and been on a plane I missed a session somewhere along the way c) the wedding we went to in November because there was noway I could do it in the evening really as we didn't have a room. There may be a few others, however I think I'd remember as I have been very determined.
It's a shame these kind of achievements are not recognised so that I can get a pay rise or a bonus, sadly it goes unnoticed by the world and I don't even feel better for it, it just keeps me going. I just have to try and think that if I hadn't done this, I would be worse off that I am, not great compensation but it helps a little.
Many people with CF find it extremely hard to be compliant with their treatment, I can't blame them. It's not easy! Some have said it's their New Years resolution, so I'm going to blog about times I find it difficult to be compliant so try help them overcome problems they also face.
So first this is my treatment routine (doesn't include gym and tablets with food)...
Morning (sometimes early afternoon!) : morning tablets, morning physio which is usually pep mask with me patting my lowers, I do 4 on each side sometimes 5 if very productive. Followed by tobi nebuliser on the i-neb (I do tobi all the time, I do not do one month on, one month off). Cleaning it all and put to dry.
Evening : Physio, I either use the acapella (I do 10 cycles of 10) or get Pete to pat my uppers whilst I use my pep mask (4 on each side, sometimes 5) followed by pulmozyme through the i-neb, clean it all and put to dry.
Late Evening (or at least an hour after the pulmozyme) : Tobi through the i-neb, clean it and put everything in the steriliser for the night. Take evening tablets.
So that's the basics, its quite easy to do if you can be bothered (a task in itself) and nothing gets in your way e.g. nights out, getting up really early etc etc
Factors that help me be compliant
I was thinking how compliant I had actually been and I think I have only missed 3 physio sessions out of 730 (since I do physio twice a day). These were a) on my wedding day, I only did physio in the morning b) coming home from Thailand due to time differences and been on a plane I missed a session somewhere along the way c) the wedding we went to in November because there was noway I could do it in the evening really as we didn't have a room. There may be a few others, however I think I'd remember as I have been very determined.
It's a shame these kind of achievements are not recognised so that I can get a pay rise or a bonus, sadly it goes unnoticed by the world and I don't even feel better for it, it just keeps me going. I just have to try and think that if I hadn't done this, I would be worse off that I am, not great compensation but it helps a little.
Many people with CF find it extremely hard to be compliant with their treatment, I can't blame them. It's not easy! Some have said it's their New Years resolution, so I'm going to blog about times I find it difficult to be compliant so try help them overcome problems they also face.
So first this is my treatment routine (doesn't include gym and tablets with food)...
Morning (sometimes early afternoon!) : morning tablets, morning physio which is usually pep mask with me patting my lowers, I do 4 on each side sometimes 5 if very productive. Followed by tobi nebuliser on the i-neb (I do tobi all the time, I do not do one month on, one month off). Cleaning it all and put to dry.
Evening : Physio, I either use the acapella (I do 10 cycles of 10) or get Pete to pat my uppers whilst I use my pep mask (4 on each side, sometimes 5) followed by pulmozyme through the i-neb, clean it all and put to dry.
Late Evening (or at least an hour after the pulmozyme) : Tobi through the i-neb, clean it and put everything in the steriliser for the night. Take evening tablets.
So that's the basics, its quite easy to do if you can be bothered (a task in itself) and nothing gets in your way e.g. nights out, getting up really early etc etc
Factors that help me be compliant
- Physio is important, you cannot miss it, let people know this and yourself! They wouldn't expect you to miss doing your insulin or taking a tablet, physio is just the same. The effects if you miss it are not instant (although you will probably feel more productive that day) but they can be in the long term.
- Saying you will do it later won't make it go away, just get it over and done with. Also washing those dishes or changing the bedding is not more important....stop putting it off!
- Yes if your mates/family are over and you do it in another room they probably can hear you... but... you have CF for gods sake what do they expect? Maybe hearing you cough your guts up will do them some good too.
- If you need to get up early, do your physio first. Otherwise you will be rushed and claim you don't have time for it if you leave it until last. You may even subconsciously take longer to get ready so you don't have time..... you sly thing!
- Yes it's your birthday/Christmas/Easter/your hamsters birthday bla bla, do you think your lungs know this? Those infections don't care and will continue to breed and destroy your lungs whatever day it is so don't think you can take a holiday because they certainly don't!
- Don't rely on parents/partners/mates to force you to do your treatments. They won't force you and even if they try, you will talk them out of it because afterall you are the expert and they will believe what you say. You must force YOURSELF, it's called willpower!
- Self pity is permitted but remember - bacteria do not feel compassion, so continue to fight those ba$tards!
Sunday, 3 January 2010
Christmas Video
I have been very busy and there is far too much to type, so instead I have put a video together of some of my Christmas fun! Obviously I forgot to photograph evey single thing I did (I have done something every day since Christmas eve up until now!). Needless to say I am tired and ready for a rest!
I've had a great week and got some lovely presents. Enjoy the video!
Warning - there is video footage of Pete with no top on!!
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