Meet our newest member of the family, Freya! Born yesterday morning weighing 8lbs 8 and a half oz. Mummy (Pete's sister) and Freya are doing well and hopefully Aunty Gemma will get to meet her next week, can't wait!Tuesday, 28 June 2011
New and Very Cute Arrival!
Meet our newest member of the family, Freya! Born yesterday morning weighing 8lbs 8 and a half oz. Mummy (Pete's sister) and Freya are doing well and hopefully Aunty Gemma will get to meet her next week, can't wait!
Wednesday, 22 June 2011
What a Difference a Week Makes
I've been a very naughty girl, I ran out of pulmozyme on Tuesday and didn't go collect the prescription from my GPs until Thursday. Which meant my pulmozyme wasn't really for collection until yesterday, so I haven't had pulmozyme for almost a week. It's mostly my fault but also the GPs and drug suppliers fault for being so slow and taking 2 days to do my prescription and then 4 working days to deliver it. If I'm going to run out of something I literally have to realise a week in advance so I can get the prescription and have it in the chemist, it can be difficult to be so organised, especially when my GPs is not around the corner and closed on a Wednesday afternoon. At least I can now email my prescription requests, I used to have to drop the request off and go collect it 2 days later, why it takes 2 days to write a prescription is beyond me...
Anyway, yes I have been naughty and now my chest is feeling crappy. It could be coincidence, but it's more likely it's due to lack of pulmozyme. My sputum is thicker, darker, more difficult to shift, it sticks at the back of my throat and makes me feel sick and it sounds more meaty when I cough. I felt so tried yesterday, all day, everything I picked up felt so heavy, I feel asleep at about 9.20pm and slept like a rock last night until 10am this morning. Well apart from when I woke at midnight due to some women shouting in the street (I wear earplugs so she must have being very loud!) and a guy telling her to 'go the f**k to sleep', I live on such a lovely street!
Hopefully now I'm fully stocked on pulmozyme I'll start to feel better again. A few other issues I have been having are A) I am weeing for Britain, I can't stop! I go upto 8 times during the night! and twice during a physio session. Worried I have a weak bladder and now idea how to sort it out. B) My bones keep aching on a night, particularly my bones around where I sit and the tops of my legs. I feel like an old woman! It hurt so much the other week I was crying in pain as it hurt to walk, or to sit and when I coughed it was horrible. I ended up lying on my back with my legs up in the air to take the pressure off my sitting bones. Some pain killers seemed to help it and I had to lie on my front in bed which isn't great as I can't breathe very well when on my front! I have outpatients next week so will mention both things and see what the Doctor has to say.
I was given some interesting advice last Friday in my yoga session.... I was coughing alot during the class and afterwards the yoga teacher came over to me and told me one of the men in the class was a Doctor and suggested my cough could be caused by acid reflux (which is basically like indigestion) and to try take some gavisgon. She said she told him about me, not sure what that means, she knows I have CF but that doesn't mean she knows anything about it! But he insisted she tell me. I politely informed her I was coughing because of the mucus on my chest and I am on tablets slightly stronger than gavisgon for my reflux and there is nothing I can do about the coughing. All I want to do is go to yoga, get some exercise and mind my own business!
Pete did a 10k run on Sunday, the Jane Tomlison Run for All as part of his training for the Great North Run. Thanks to all of you that have already sponsored him but for those of you who haven't please do! Pete is working so hard to prepare himself and remember it all goes to the CF Trust who have recently had to announce they are having to put research on hold due to lack of funding http://www.bbc.co.uk/news/health-13643267 . Please click here to donate.
It's Alfies birthday today, he is 4 years old! He is heading to middle age now bless him, maybe he'll buy a sports car or something! Here he is the first day we got him
Here he is now, what a handsome boy he turned in to!
Anyway, yes I have been naughty and now my chest is feeling crappy. It could be coincidence, but it's more likely it's due to lack of pulmozyme. My sputum is thicker, darker, more difficult to shift, it sticks at the back of my throat and makes me feel sick and it sounds more meaty when I cough. I felt so tried yesterday, all day, everything I picked up felt so heavy, I feel asleep at about 9.20pm and slept like a rock last night until 10am this morning. Well apart from when I woke at midnight due to some women shouting in the street (I wear earplugs so she must have being very loud!) and a guy telling her to 'go the f**k to sleep', I live on such a lovely street!
Hopefully now I'm fully stocked on pulmozyme I'll start to feel better again. A few other issues I have been having are A) I am weeing for Britain, I can't stop! I go upto 8 times during the night! and twice during a physio session. Worried I have a weak bladder and now idea how to sort it out. B) My bones keep aching on a night, particularly my bones around where I sit and the tops of my legs. I feel like an old woman! It hurt so much the other week I was crying in pain as it hurt to walk, or to sit and when I coughed it was horrible. I ended up lying on my back with my legs up in the air to take the pressure off my sitting bones. Some pain killers seemed to help it and I had to lie on my front in bed which isn't great as I can't breathe very well when on my front! I have outpatients next week so will mention both things and see what the Doctor has to say.
I was given some interesting advice last Friday in my yoga session.... I was coughing alot during the class and afterwards the yoga teacher came over to me and told me one of the men in the class was a Doctor and suggested my cough could be caused by acid reflux (which is basically like indigestion) and to try take some gavisgon. She said she told him about me, not sure what that means, she knows I have CF but that doesn't mean she knows anything about it! But he insisted she tell me. I politely informed her I was coughing because of the mucus on my chest and I am on tablets slightly stronger than gavisgon for my reflux and there is nothing I can do about the coughing. All I want to do is go to yoga, get some exercise and mind my own business!
Pete did a 10k run on Sunday, the Jane Tomlison Run for All as part of his training for the Great North Run. Thanks to all of you that have already sponsored him but for those of you who haven't please do! Pete is working so hard to prepare himself and remember it all goes to the CF Trust who have recently had to announce they are having to put research on hold due to lack of funding http://www.bbc.co.uk/news/health-13643267 . Please click here to donate.
It's Alfies birthday today, he is 4 years old! He is heading to middle age now bless him, maybe he'll buy a sports car or something! Here he is the first day we got him
Here he is now, what a handsome boy he turned in to!
Wednesday, 15 June 2011
Walking on the Level
Hello!
Sorry again I haven't posted for awhile, I guess it's a good sign because it means I'm busy which means I am feeling good!
We came back from the Lake District yesterday, we went Sunday to Tuesday and had a lovely time. My brother and his girlfriend were supposed to come with us, but her Grandad sadly died on Saturday night so in the end my brother still came after some persuasion! It rained on the Sunday so we just stayed in playing boardgames and cards and drank, and and went out for a meal at he local pub. I was designated driver that evening, the house is in the middle of nowhere up a massive hill which involves driving up a long, windy road and in Pete's car which I'm not used to driving, it was an experience to say the least. Pete does most of the driving when we usually go to the Lakes, so I'm not really used to it! We got home in one piece and I only stalled twice so I can't have be that bad...!
The next day we went for a walk with a stop at a pub halfway and then on Tuesday my brother left early and Pete and I went for a walk around Grizedale Park on one of the easy routes before heading home. If anyone is going to the Lakes and wants to go on walks but is like me and pretty rubbish at walking due to CF or anything else that limits your mobility, you should purchase a book called 'Lakeland Walking on the Level' by Norman Buckley. We have just purchased the second edition as its great for me, there is no way I could do alot of the walks in other books as there are just far too many hills, there only needs to be a small slope and I'm coughing and breathless. These walks try to be as flat as possible, yes there are still slopey parts, it is the Lake District after all but they are perfect for people like me. The walks vary from about 1 mile to 7 miles and often it has short cuts if you are getting tired. It outlines how much rise and fall there is at the start of each walk so you have an idea of how hilly its going to be too.
I'm tired today after our trip so going to take it easy and leave you with these photos!
Sorry again I haven't posted for awhile, I guess it's a good sign because it means I'm busy which means I am feeling good!
We came back from the Lake District yesterday, we went Sunday to Tuesday and had a lovely time. My brother and his girlfriend were supposed to come with us, but her Grandad sadly died on Saturday night so in the end my brother still came after some persuasion! It rained on the Sunday so we just stayed in playing boardgames and cards and drank, and and went out for a meal at he local pub. I was designated driver that evening, the house is in the middle of nowhere up a massive hill which involves driving up a long, windy road and in Pete's car which I'm not used to driving, it was an experience to say the least. Pete does most of the driving when we usually go to the Lakes, so I'm not really used to it! We got home in one piece and I only stalled twice so I can't have be that bad...!
The next day we went for a walk with a stop at a pub halfway and then on Tuesday my brother left early and Pete and I went for a walk around Grizedale Park on one of the easy routes before heading home. If anyone is going to the Lakes and wants to go on walks but is like me and pretty rubbish at walking due to CF or anything else that limits your mobility, you should purchase a book called 'Lakeland Walking on the Level' by Norman Buckley. We have just purchased the second edition as its great for me, there is no way I could do alot of the walks in other books as there are just far too many hills, there only needs to be a small slope and I'm coughing and breathless. These walks try to be as flat as possible, yes there are still slopey parts, it is the Lake District after all but they are perfect for people like me. The walks vary from about 1 mile to 7 miles and often it has short cuts if you are getting tired. It outlines how much rise and fall there is at the start of each walk so you have an idea of how hilly its going to be too.
I'm tired today after our trip so going to take it easy and leave you with these photos!
Wednesday, 1 June 2011
Wee Fatty Bum Bum
I had outpatients on Friday, I had a feeling I might need IVs as was feeling very tired and coughing alot even though I didn't feel like I needed them if you know what I mean! However my lung function is up to 43% and my weight is 57.1kg! I had my port flushed and the nurse missed first time and got the needle in the second time. Yes it hurts when she misses, she is basically sticking a large thick needle, nothing like a vaccine needle, into my muscle, I've now got a little bruise! The doctor asked her to take some blood just to take my tobramycin levels as I keep feeling dizzy and she was worried I had too much tobramycin in my blood as I'm on tobi nebulisers all the time rather than one month on and one month off. To be honest I just think its because I'm tired from the holiday, I haven't heard anything from them so I guess they were OK!
I'm surprisingly bothered about my weight, I felt I'd put weight on but thought it might be just in my head. But it seems I've put on 2kg on and it appears all on my belly so I'm going to try up my exercise and cut back on snacks slightly just until I feel better about myself. I need to pick up on my exercise anyway, I've slacked off and even Alfie has put some weight on so we need to go walking more often! I'm not obsessed or going to starve myself (I've had two takeaways since Friday!) or anything, I just don't like having a belly that is flabby and sticks out! I know people will think I'm pathetic thinking this but its the most I've weighed in about 3-4 years, I just need to tone up abit I guess, I'll probably be back to 55kg by my next appointment and I I'll eat what i normally eat, my body is just like that.
Something creepy happened the other day, I had finished my nebuliser and was going to wash it and there was a bug in it! Right by the bit where the mist squirts out into my mouth! It was a little black bug with orange spots and a wiggly tail. I was so freaked out, I have no idea how it did not get squirted into my mouth! Now I keep checking every time I do my nebulisers, ew!
I'm surprisingly bothered about my weight, I felt I'd put weight on but thought it might be just in my head. But it seems I've put on 2kg on and it appears all on my belly so I'm going to try up my exercise and cut back on snacks slightly just until I feel better about myself. I need to pick up on my exercise anyway, I've slacked off and even Alfie has put some weight on so we need to go walking more often! I'm not obsessed or going to starve myself (I've had two takeaways since Friday!) or anything, I just don't like having a belly that is flabby and sticks out! I know people will think I'm pathetic thinking this but its the most I've weighed in about 3-4 years, I just need to tone up abit I guess, I'll probably be back to 55kg by my next appointment and I I'll eat what i normally eat, my body is just like that.
Something creepy happened the other day, I had finished my nebuliser and was going to wash it and there was a bug in it! Right by the bit where the mist squirts out into my mouth! It was a little black bug with orange spots and a wiggly tail. I was so freaked out, I have no idea how it did not get squirted into my mouth! Now I keep checking every time I do my nebulisers, ew!
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