I finished my IVs on Friday and even though my lung function has not actually increased, in fact it is 1% lower at 41%, I managed to escape! I went on my IV's because I had a cold and it was affecting my chest, not because I'd had a fall in lung function, well I had, not nothing below my normal range. So since my chest is feeling alot better and my weight is up abit at 55kg, the doctor and I think the lung function will increase once I am exercising again and back to feeling myself.
I have yoga this evening so I will see how breathless I get, which will probably be a lot since I haven't been regularly since before Christmas! I can usually tell if its fitness related or CF related though. Not sure how, but I can tell because I am such an expert.... haha!
Pete and I went to see Black Swan on Saturday night, warning, there are some very rude scenes in that film that I was not expecting! Pete thought it was rubbish but I thought it was quite good in a weird way, don't think I'll be buying the DVD though. Go see the Kings Speech if you haven't seen it, it's much better!
My knitting it going well, I got the bring it home with me and I've been doing it whilst watching the TV, I also took it to the hospital with me on Friday to do whilst waiting. The needles were poking out of my bag when walking around and I was worried I may get told off by hospital security, I'm not sure how rules around knitting needles possibly been used a weapon stand, personally I think it's possible since I've already nearly had one incident with Alfie....! Apparently next week we are moving on to pearl stitch, how very exciting, I am onto the next level!
Monday, 31 January 2011
Thursday, 27 January 2011
Knitting Lesson no 2
On Sunday we went to Pete's Grandad's birthday get together, we got to meet Pete's new cousins too which was nice.
I didn't sleep well at all on Saturday night which is interesting because on the radio on Tuesday they were saying that having your mobile phone turned on in your bedroom can make you get insomnia. Usually I turn my phone off and leave it in my bag every night, but Pete went out with his friends so I had it turned on, on my bedside table and got about 3 hours sleep. Anyway the result was that I didn't feel cracking on Sunday, my colomycin dosage was upped to 2 mega units x3 a day from 1 mega unit x3 a day on Friday, so I think this made me feel quite groggy Friday, Saturday, Sunday and Monday. On the journey to the party I got terrible travel sickness and I had to get Pete to stop at a service station for me to set up my IV's in the car, there was no way I could have done them whilst he was driving, if I took my eyes off the road I think I would have been sick.
So I arrived feeling and probably looking like crap, attached to my IV's, wanting to lie down! I felt better once I'd had some food and a coffee or two, but I wasn't my usual self.
I don't like doing my IVs in front of Pete's family, I don't mean his close family but his extended family. I don't think they know much about my CF or that I even have CF and I just feel awkward and rude having to change them over and plonking my equipment down without much of an explanation. I hate the thought of people thinking of me as being sick, when I was holding one of the twins I coughed and I was worried they might think I could infect them or something. It's probably all in my mind, but I don't know what or how people think as I've never been on the other side. I guess I just get slightly embarrassed by it all which I think is natural.
I didn't sleep well at all on Saturday night which is interesting because on the radio on Tuesday they were saying that having your mobile phone turned on in your bedroom can make you get insomnia. Usually I turn my phone off and leave it in my bag every night, but Pete went out with his friends so I had it turned on, on my bedside table and got about 3 hours sleep. Anyway the result was that I didn't feel cracking on Sunday, my colomycin dosage was upped to 2 mega units x3 a day from 1 mega unit x3 a day on Friday, so I think this made me feel quite groggy Friday, Saturday, Sunday and Monday. On the journey to the party I got terrible travel sickness and I had to get Pete to stop at a service station for me to set up my IV's in the car, there was no way I could have done them whilst he was driving, if I took my eyes off the road I think I would have been sick.
So I arrived feeling and probably looking like crap, attached to my IV's, wanting to lie down! I felt better once I'd had some food and a coffee or two, but I wasn't my usual self.
I don't like doing my IVs in front of Pete's family, I don't mean his close family but his extended family. I don't think they know much about my CF or that I even have CF and I just feel awkward and rude having to change them over and plonking my equipment down without much of an explanation. I hate the thought of people thinking of me as being sick, when I was holding one of the twins I coughed and I was worried they might think I could infect them or something. It's probably all in my mind, but I don't know what or how people think as I've never been on the other side. I guess I just get slightly embarrassed by it all which I think is natural.
Pete with one of the twins
Pete's sister with the other twin
Pete's mum (also the twins aunty) and I with the twins
The twins with their mummy and aunty
I met up with some friends last night which was great as I feel like I haven't seen them for ages! We were talking about disabilities and adoption/surrogacy as one is training to be a psychologist and the other is a social worker. It was really interesting as my friend says that I am very honest about my CF and realistic but yet see the positives in my life and cope well with the problems I face. It's nice to think that's how I am or at least how people think I am. I keep doubting myself as to whether I am going to be able to cope with a baby and wondering if I am silly, but I know in my heart I wouldn't be doing it if I didn't think I could.
I had some training on MS (multiple Sclerosis) today as part of my voluntary role at Scope. It was good to learn about another unseen disability and interesting to see the similarities of the problems associated with the condition and my own. I have another knitting lesson tonight, hopefully I might be allowed to bring it home with me this time and do some on my own, haha!
Friday, 21 January 2011
Half Way There
7 days down and 7 to go!
IVs seem to be going OK, my chest is feeling alot better, I'm coughing up less sputum and it doesn't feel to be rattling around my chest as much. Although my IVs seem to be making me quite tired this time around, I think I could sleep all day given the opportunity!
The nurse came to see me today and make a very valid point when I told her about my tiredness and that Pete has had to make tea alot. She pointed out that if I was in hospital which most people normally would be when having IVs, I'd get everything done for me. But as I'm at home everyone seems to think (including me) that life goes on as normal, when in fact I actually need to get some rest to help the IVs work.
The whole point of home IVs is so they don't interfere with my life, but at the same time I still need to rest. I guess it's a balancing act!
My silly port didn't bleed back when she changed my needle, so I had to have some blood taken out of my hand. The needle vibrated when she started pulling the blood out, it was weird but cool! She said it must have touched a nerve but it didn't hurt, never had that happen before, very interesting..!
I've lost abit of weight which is quite funny because I was moaning to Pete last week that my belly was getting fat and I was going to go on a diet, I then enquired as to what you can eat on a diet and when he told me I decided dieting wasn't for me. However it would seem I have lost a kg in a week anyway. My belly isn't as fat anymore anyway, I think it was more all the bloating from those damn iron tablets that are still causing me to have painful constipation. I'm up to two movicols a day to try get things moving, but it's still a struggle! The nurse says if my levels come back OK, I can stop taking them, wahoo! I swear last week I could not fasten some of my jeans my belly was sticking out so much!
I started my knitting lessons last night, it's a lady I know from Scope that is teaching me. I went to her house and spent about an hour there and lets just say, I don't think I am going to be a natural! We are starting with a scarf and I got about two rows (if that's what you call them) done, even then I managed to get a big hole in it somehow and she had to correct it! Her cat is so funny, he only has three legs but you wouldn't know with the way he jumps around. She herself has cerebral palsy and cannot walk or move herself around, amongst other things, it sometimes puts your life into perspective when you see how other people with disabilities live, I may be poorly but at least I have quite alot of independence compared to others.
IVs seem to be going OK, my chest is feeling alot better, I'm coughing up less sputum and it doesn't feel to be rattling around my chest as much. Although my IVs seem to be making me quite tired this time around, I think I could sleep all day given the opportunity!
The nurse came to see me today and make a very valid point when I told her about my tiredness and that Pete has had to make tea alot. She pointed out that if I was in hospital which most people normally would be when having IVs, I'd get everything done for me. But as I'm at home everyone seems to think (including me) that life goes on as normal, when in fact I actually need to get some rest to help the IVs work.
The whole point of home IVs is so they don't interfere with my life, but at the same time I still need to rest. I guess it's a balancing act!
My silly port didn't bleed back when she changed my needle, so I had to have some blood taken out of my hand. The needle vibrated when she started pulling the blood out, it was weird but cool! She said it must have touched a nerve but it didn't hurt, never had that happen before, very interesting..!
I've lost abit of weight which is quite funny because I was moaning to Pete last week that my belly was getting fat and I was going to go on a diet, I then enquired as to what you can eat on a diet and when he told me I decided dieting wasn't for me. However it would seem I have lost a kg in a week anyway. My belly isn't as fat anymore anyway, I think it was more all the bloating from those damn iron tablets that are still causing me to have painful constipation. I'm up to two movicols a day to try get things moving, but it's still a struggle! The nurse says if my levels come back OK, I can stop taking them, wahoo! I swear last week I could not fasten some of my jeans my belly was sticking out so much!
I started my knitting lessons last night, it's a lady I know from Scope that is teaching me. I went to her house and spent about an hour there and lets just say, I don't think I am going to be a natural! We are starting with a scarf and I got about two rows (if that's what you call them) done, even then I managed to get a big hole in it somehow and she had to correct it! Her cat is so funny, he only has three legs but you wouldn't know with the way he jumps around. She herself has cerebral palsy and cannot walk or move herself around, amongst other things, it sometimes puts your life into perspective when you see how other people with disabilities live, I may be poorly but at least I have quite alot of independence compared to others.
Friday, 14 January 2011
Old Friend/Enemy
Today I commenced on my old friend/enemy, the home IV's.
I think I had already mentioned that I was feeling about rough after Christmas and then on Saturday I woke up with a cold. By Sunday I felt quite sh!te to be honest and couldn't even lie down properly in bed as it just made me cough all the time, so I spent the night propped up to stop coughing.
The snot from my nose and mucus from my chest is never ending, I want to just stick a vacuum down there and suck it all out! I have little energy and I'm getting headaches from the coughing and my sinuses. So on Monday I called to start IV's, it's not going to sort it's self out and the longer I leave it the worse it will get, plus the doctor said to start them if I felt myself slipping. I've come to the conclusion they like to treat my exacerbation's (that's what they call it) as soon as possible, rather than see how it goes because there is generally only one way it's going to go, and it's not positive!
I think I had already mentioned that I was feeling about rough after Christmas and then on Saturday I woke up with a cold. By Sunday I felt quite sh!te to be honest and couldn't even lie down properly in bed as it just made me cough all the time, so I spent the night propped up to stop coughing.
The snot from my nose and mucus from my chest is never ending, I want to just stick a vacuum down there and suck it all out! I have little energy and I'm getting headaches from the coughing and my sinuses. So on Monday I called to start IV's, it's not going to sort it's self out and the longer I leave it the worse it will get, plus the doctor said to start them if I felt myself slipping. I've come to the conclusion they like to treat my exacerbation's (that's what they call it) as soon as possible, rather than see how it goes because there is generally only one way it's going to go, and it's not positive!
So I started IV's today, my fev1 is 42% so down 4% from last time but still quite good for me. My weight is up a tiny bit, which I knew it would be because my belly has been feeling slightly flabby and my trousers abit tight! They took a swab from my throat like they do every time, I'm 99.9% sure it will come back saying I have a virus! The doctor checked I'd had my flu jab, apparently alot of naughty patients haven't and have got flu and swine flu, some have it even though they have had the jab! I assured her I was the gold star patient and do everything I am told to do. She says it's fine to cut my iron tablets down to two a day which I've been doing for the past week or so, as they are what is causing my tummy problems.
That's about it! I'm on Colomycin and Ceftazidime and I also am the new owner of a pari pep, it's like a pep mask but a mouth piece rather than a mask. To be honest I don't think it's as good from my short practise with the physio earlier, but I'll give it a go. The only reason I have it is for vanity reasons, I complained the pep mask rubs my make up off which is a pain when I'm ready to go out and need to do my physio, it's also a pain when I have my glasses on as the mask pushes them up. So hence I have been provided a pari pep to try out.
Pari Pep below and Pep Mask at the bottom
Friday, 7 January 2011
Niceness doesn't get you anywhere!
Well yesterday I called up respironics about my i-neb disks again and decided this time I was going to take a more nasty approach, been nice doesn't get you anywhere and now I have proof.
I called up at about 4.15pm and complained I still hadn't got my disks and now I couldn't do my treatment, she told me she would order some by courier tomorrow as it was too late today and they would arrive by Saturday, was that OK with me? I grunted back ' well I don't have much choice do I?', then surprise surprise she said she would see if she could get them sent out today! I told her 'that would be great thanks!' and left it with her.
This morning at about 9am a fedex man delivered me some i-neb disks, wahay! Then at about 11.45am the postman delivered the other disks I have been waiting for since the 23rd December. So now I have loads of disks, wahoo! So now I like the respironics lady again, I guess she just needed a little nudge! Typical though that the other ones then got delivered as well!
We got our wall insulation fitted yesterday, he was supposed to arrive between 10 and 12 and came at exactly 12, I was literally dialling the number to see where he had got to and he turned up! It took him about 3 hours, they drill holes in the wall they pump in the insulation then seal the holes back up. We now need to get our loft done but haven't heard anything from warmfront yet regarding this. If you receive any form of benefit, (it doesn't necessarily have to be disability related) you should see if you are eligible. They are not taking applications at the moment, as are way behind, we applied in May! But it says they will be taking applications again in April. You could get a new boiler for free! So check it out!
I had yoga this morning for the first time since before Christmas and my god it was hard work! It wasn't even a difficult class! In fact towards the end I started to feel very weak and abit lightheaded which can't be good! Not sure if it's my body or my fitness because I've had two weeks off. On a good note though I did get to wear my new kit that Pete bought me for Christmas!
I had a bit of trouble getting out of the gym carpark as it's decided to snow again today and everywhere is covered, it seems there is no grit and its settling very well and quickly. To leave the gym is uphill so I was sliding around and doing a lot of wheel spinning but I got there in the end! I saw some idiot in the carpark driving around like there was no snow at all, he ended up skidding and was about an inch away from hitting a post. So let that be a lesson ladies and gents, the snow is not to be messed with!
I called up at about 4.15pm and complained I still hadn't got my disks and now I couldn't do my treatment, she told me she would order some by courier tomorrow as it was too late today and they would arrive by Saturday, was that OK with me? I grunted back ' well I don't have much choice do I?', then surprise surprise she said she would see if she could get them sent out today! I told her 'that would be great thanks!' and left it with her.
This morning at about 9am a fedex man delivered me some i-neb disks, wahay! Then at about 11.45am the postman delivered the other disks I have been waiting for since the 23rd December. So now I have loads of disks, wahoo! So now I like the respironics lady again, I guess she just needed a little nudge! Typical though that the other ones then got delivered as well!
We got our wall insulation fitted yesterday, he was supposed to arrive between 10 and 12 and came at exactly 12, I was literally dialling the number to see where he had got to and he turned up! It took him about 3 hours, they drill holes in the wall they pump in the insulation then seal the holes back up. We now need to get our loft done but haven't heard anything from warmfront yet regarding this. If you receive any form of benefit, (it doesn't necessarily have to be disability related) you should see if you are eligible. They are not taking applications at the moment, as are way behind, we applied in May! But it says they will be taking applications again in April. You could get a new boiler for free! So check it out!
I had yoga this morning for the first time since before Christmas and my god it was hard work! It wasn't even a difficult class! In fact towards the end I started to feel very weak and abit lightheaded which can't be good! Not sure if it's my body or my fitness because I've had two weeks off. On a good note though I did get to wear my new kit that Pete bought me for Christmas!
I had a bit of trouble getting out of the gym carpark as it's decided to snow again today and everywhere is covered, it seems there is no grit and its settling very well and quickly. To leave the gym is uphill so I was sliding around and doing a lot of wheel spinning but I got there in the end! I saw some idiot in the carpark driving around like there was no snow at all, he ended up skidding and was about an inch away from hitting a post. So let that be a lesson ladies and gents, the snow is not to be messed with!
Thursday, 6 January 2011
The Festive Season
Dear Blog, I am sorry I have neglected you over the last month. What can I say? I have been busy and not had much to say! I promise to give you more attention from now on...
Happy New Year everyone! Lets hope that 2011 is going to be a good, happy and healthy one! My new years resolution is to learn how to knit! I am starting my lessons this months with a friend from Scope, so put your orders in for scarves etc haha!
Here's a run down on what I have got up to over the festive season...
On Christmas Eve we went to my Nana's like we do every year
My brother and his girlfriend
Two of my cousins
Christmas Day we went to my Dad's for breakfast, his heating has broken so we were kept warm by the smallest heater ever! Good job I got a new coat for Christmas! We then went to see my Nana then went home and waited for my brother to come and pick up us. He rang us after about an hour to inform us he had forgotten to come and pick us up! So we made our own way to my Mum's for Christmas lunch, then in the evening went to my Aunties for a party.
On boxing day we went to my aunties from my dads side and I finally got to meet his girlfriend and then on the Monday we went to another aunties from my mums side.
Then on Wednesday we made our way over to Stockport to see Pete's family, I am terrible at remembering to take photos, I have told Pete to get some off his Dad, but so far no luck! Pete's parents bought us lots of lovely bedding and some plane tickets to go on holiday with them on the sailing boat in May, wahoo! We met up with some friends in Stockport too, I actually remembered to take some photos here!
We came home on Friday for New Years Eve, had some friends around to ours and someone came up with the smart of idea of playing a drinking game , we then went to our local pub for midnight, karaoke was involved I'm afraid to say, then we came back to ours to eat our takeaways.
Since then we have both been recovering from our busy week, watched a few dvds, got a curry etc. We do not do sales shopping and stay as far away from the shops as possible!!
CF wise I haven't been great but not bad either. I think all the drinking dries out my chest and makes it difficult to shift the mucus, then obviously all our plans have tired me out. Also I seem to have had alot of tummy/toilet problems, I'm not sure if its the iron tablets or the fact its difficult to keep control of taking enzymes with food over Christmas. I find I am nibbling on things all the time, but not enough to warrant taking a tablet with! It's probably a combination of both.
On top of all this, even though I rang up before Christmas to get some more disks for my I-neb, they still haven't been delivered and now I have one cycle left on my disk and still no sign of any more been delivered. The company assure me some were sent out on the 29th (even though I called up before Christmas!), so royal mail have let me down big time.
I also ordered some more sachets for my nasal rinse before Christmas and they still haven't arrived and it hurts too much to just use salt, so my sinuses are starting to feel congested. I also dropped off my prescription for my tobi before Christmas and it still hasn't arrived at the chemist, not that I'd be able to do it anyway as I can't use my I-neb!
So even though I have been 100% compliant all the way through the festive season, and I've felt like all I've done is plan things around treatment and spent every spare minute doing them, I now can not do all my treatments, infact from tomorrow all I can do is physio and no nebs what so ever. Why are companies incapable of functioning throughout Christmas? I manage, other people manage it! Thanks to them I'm probably going to end up on IV's, I already feel like I am slipping. So thanks royal mail, respironics, chemist direct and the tobi suppliers for nothing...! God it makes me so mad!
Happy New Year everyone! Lets hope that 2011 is going to be a good, happy and healthy one! My new years resolution is to learn how to knit! I am starting my lessons this months with a friend from Scope, so put your orders in for scarves etc haha!
Here's a run down on what I have got up to over the festive season...
On Christmas Eve we went to my Nana's like we do every year
My brother and his girlfriend
Two of my cousins
Christmas Day we went to my Dad's for breakfast, his heating has broken so we were kept warm by the smallest heater ever! Good job I got a new coat for Christmas! We then went to see my Nana then went home and waited for my brother to come and pick up us. He rang us after about an hour to inform us he had forgotten to come and pick us up! So we made our own way to my Mum's for Christmas lunch, then in the evening went to my Aunties for a party.
On boxing day we went to my aunties from my dads side and I finally got to meet his girlfriend and then on the Monday we went to another aunties from my mums side.
Then on Wednesday we made our way over to Stockport to see Pete's family, I am terrible at remembering to take photos, I have told Pete to get some off his Dad, but so far no luck! Pete's parents bought us lots of lovely bedding and some plane tickets to go on holiday with them on the sailing boat in May, wahoo! We met up with some friends in Stockport too, I actually remembered to take some photos here!
We came home on Friday for New Years Eve, had some friends around to ours and someone came up with the smart of idea of playing a drinking game , we then went to our local pub for midnight, karaoke was involved I'm afraid to say, then we came back to ours to eat our takeaways.
Since then we have both been recovering from our busy week, watched a few dvds, got a curry etc. We do not do sales shopping and stay as far away from the shops as possible!!
CF wise I haven't been great but not bad either. I think all the drinking dries out my chest and makes it difficult to shift the mucus, then obviously all our plans have tired me out. Also I seem to have had alot of tummy/toilet problems, I'm not sure if its the iron tablets or the fact its difficult to keep control of taking enzymes with food over Christmas. I find I am nibbling on things all the time, but not enough to warrant taking a tablet with! It's probably a combination of both.
On top of all this, even though I rang up before Christmas to get some more disks for my I-neb, they still haven't been delivered and now I have one cycle left on my disk and still no sign of any more been delivered. The company assure me some were sent out on the 29th (even though I called up before Christmas!), so royal mail have let me down big time.
I also ordered some more sachets for my nasal rinse before Christmas and they still haven't arrived and it hurts too much to just use salt, so my sinuses are starting to feel congested. I also dropped off my prescription for my tobi before Christmas and it still hasn't arrived at the chemist, not that I'd be able to do it anyway as I can't use my I-neb!
So even though I have been 100% compliant all the way through the festive season, and I've felt like all I've done is plan things around treatment and spent every spare minute doing them, I now can not do all my treatments, infact from tomorrow all I can do is physio and no nebs what so ever. Why are companies incapable of functioning throughout Christmas? I manage, other people manage it! Thanks to them I'm probably going to end up on IV's, I already feel like I am slipping. So thanks royal mail, respironics, chemist direct and the tobi suppliers for nothing...! God it makes me so mad!
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