No matter how ill I feel or how bad life seems, it always seems that little bit more bareable when the sun is out. Not that im feeling overly ill, its just a fact!
Ive been enjoying the sun and been on little trips out to the pub and to the shops just to enjoy the weather. I had a great shopping trip with mummy on friday to Lakeside. I am stopping myself buying clothes as i dont really need any, i just need to iron the clothes i do have lol. However, i did need some thin cardigans just to cover my arms if it gets chilly so i got 2. When we went past Republic, there were people standing outside giving out 25% off vouchers so i had a little look and ended up with 2 pairs of shorts haha!! It was a bargin though - 2 pairs for £12 and then 25% off so i got them for £9 - couldnt turn it down could i? :) I also brought some stud, heart, sparkley earrings and 2 books to read. We picked up a present for Scott for his birthday (which is in a few weeks) too. Very happy!! I was pleased that i made it all the way round lakeside on both levels but was knackered after.
Saturday I went to a few shops with Scott and had a nice day out in the sun and I finished off in the pub watching the chelsea match. Sunday was abit more of a rest day just reading the paper and eating my easter eggs...easter egg chocolate is the best and always seems to taste nicer! Me, mum, Danny and Scott went for a meal at the carvery which made a change and was actually really nice to do something together.
My chest is not too bad and likes this weather anyway, apart from of a night, if i dont have a fan on, i cough alot more due to the stuffiness. Im still on the voriconazole tablets which finish this saturday i think. I have clinic tomorrow and just hope for my numbers to be stable as i dont think there will be dramatic increases. I am going to ask for salt tablets though as i do suffer in this weather. CF patients lose alot of salt when they sweat and we taste like a chip!! This salt loss can lead to really low energy levels which happens to me so i have been upping the salt on my food and having salt and vinegar crisps to tide me over until clinic.
x Lots of love x
Monday 25 April 2011
Monday 18 April 2011
My little bro is fundraising
My little bro Danny has managed to get a place on the Cystic Fibrosis football team for a charity match at Chelsea FC stadium: Stamford Bridge!! They will be playing against football legends and celebrities apparently, on 17th May. We are all looking forward to it and think it will be a great day out. This is his 1st time fundraising so I ask if you could donate anything, no matter how small, to show your support, we would be really thankful!!
www.justgiving.com/stamfordbridge
Since my last blog, ive been busy and feeling quite well actually. I had clinic tuesday, which was crap, so i wont go into details. Lung function and weight was down abit, but no-one else was too worried so maybe i was too hard on myself as i wasnt feeling great. The bloody fire alarm went off halfway through and it wasnt a drill, which was quite funny actually and many people escaped out the side doors of clinic!! lol.
Since thursday, my chest has been clearer and ive had more energy so im doing well. Ive been shopping alittle and then went to visit my friend, who had a baby girl last week called Paris. She is gorgeous and soooo tiny and now she is on maternity leave, i can keep her company on days where we are bored!! :) I have also been forced to watch the Scream films as we went to see the new one on Saturday with our other couple friends. I spent most of the film with fingers in ears and squinting at the screen...i dont deal well with scary/creepy films...i have an overactive imagination!!
I found 2 great things this week:
I have got virgin media boxes and you can look at 'music on demand' so look at all types of music videos, and then i saw a karaoke section!! I was in scotts room whilst he was in the bath and got all excited so shouted and told him, and because he was in the bath, i looked on the disney songs (of course) and gave him a rendition of 'Under the Sea' from the little mermaid. I managed the whole song without coughing, so impressed myself...scott was not impressed at the song choice especially when he got out the bath halfway through and caught me singing into the remote! It was just habit!
The second is prob only appreicated by CF people. I have found great bras!! Let me explain....I hate wearing bras because it feels like someone has put an elastic band round my chest and the first thing i do when i walk in the door is take it off and relax. I have tried getting bigger sizes but because i like the underwired with cups in, no matter what, they still dig in. I also have to wear strapless bras as my port sticks out in my chest and its right over were the strap should be and it rubs and hurts. I found the solution in peacocks!! 2 for £6 the have cups built into them so give a nice shape but the top and bottom are elasticated bands. They are like a tiny boob tube top basically and sooooo comfy. I was so happy. May sound silly to some people but its little things like this, that make my life so much easier.
x Lots of love x
www.justgiving.com/stamfordbridge
Since my last blog, ive been busy and feeling quite well actually. I had clinic tuesday, which was crap, so i wont go into details. Lung function and weight was down abit, but no-one else was too worried so maybe i was too hard on myself as i wasnt feeling great. The bloody fire alarm went off halfway through and it wasnt a drill, which was quite funny actually and many people escaped out the side doors of clinic!! lol.
Since thursday, my chest has been clearer and ive had more energy so im doing well. Ive been shopping alittle and then went to visit my friend, who had a baby girl last week called Paris. She is gorgeous and soooo tiny and now she is on maternity leave, i can keep her company on days where we are bored!! :) I have also been forced to watch the Scream films as we went to see the new one on Saturday with our other couple friends. I spent most of the film with fingers in ears and squinting at the screen...i dont deal well with scary/creepy films...i have an overactive imagination!!
I found 2 great things this week:
I have got virgin media boxes and you can look at 'music on demand' so look at all types of music videos, and then i saw a karaoke section!! I was in scotts room whilst he was in the bath and got all excited so shouted and told him, and because he was in the bath, i looked on the disney songs (of course) and gave him a rendition of 'Under the Sea' from the little mermaid. I managed the whole song without coughing, so impressed myself...scott was not impressed at the song choice especially when he got out the bath halfway through and caught me singing into the remote! It was just habit!
The second is prob only appreicated by CF people. I have found great bras!! Let me explain....I hate wearing bras because it feels like someone has put an elastic band round my chest and the first thing i do when i walk in the door is take it off and relax. I have tried getting bigger sizes but because i like the underwired with cups in, no matter what, they still dig in. I also have to wear strapless bras as my port sticks out in my chest and its right over were the strap should be and it rubs and hurts. I found the solution in peacocks!! 2 for £6 the have cups built into them so give a nice shape but the top and bottom are elasticated bands. They are like a tiny boob tube top basically and sooooo comfy. I was so happy. May sound silly to some people but its little things like this, that make my life so much easier.
x Lots of love x
Sunday 10 April 2011
Relief???
Ok...i dont know if thats the right word. I seem to be saying that phrase alot lately and its only because im feeling so many different emotions so i dont really know how to describe it or how to put my feelings across.
This week ive mainly been really happy and feeling better, apart from one part which i will get out of the way now....me and Scott have cancelled our holiday to Rome :( My mum had mentioned it to me before but i was determined to go but then Scott mentioned it on tuesday night so we spoke about it. I looked at my mum and she swore that she hadnt spoken to scott as it seemed very suspicious!! We basically agreed that i would have to put off going on the list in order to go, that oxygen may need to be taken, and that he thinks we would have such a good time after transplant and that i could even run up the spanish steps lol. Its things like this that make me love Scott that little bit more then i thought i could. It was abit of relief as i wouldnt have to worry about the oxygen or if i was going to be well but i was so upset and disappointed that CF, had yet again, got in the way.
In good news....the weather is lovely!! My chest loves this weather and has felt better bit by bit. Although i am on those new tablets so it maybe something to do with them too!! I have been able to see better and ive had more energy so a good week. Im feeling happy too! No particular reason, I just feel alright! My dad also finished his radiotherapy treatment on friday too so that is great.
To keep in with the happy mood, i will leave you with a picture of some of my dinner on Wednesday....made me giggle....im so childish!!
x Lots of love x
This week ive mainly been really happy and feeling better, apart from one part which i will get out of the way now....me and Scott have cancelled our holiday to Rome :( My mum had mentioned it to me before but i was determined to go but then Scott mentioned it on tuesday night so we spoke about it. I looked at my mum and she swore that she hadnt spoken to scott as it seemed very suspicious!! We basically agreed that i would have to put off going on the list in order to go, that oxygen may need to be taken, and that he thinks we would have such a good time after transplant and that i could even run up the spanish steps lol. Its things like this that make me love Scott that little bit more then i thought i could. It was abit of relief as i wouldnt have to worry about the oxygen or if i was going to be well but i was so upset and disappointed that CF, had yet again, got in the way.
In good news....the weather is lovely!! My chest loves this weather and has felt better bit by bit. Although i am on those new tablets so it maybe something to do with them too!! I have been able to see better and ive had more energy so a good week. Im feeling happy too! No particular reason, I just feel alright! My dad also finished his radiotherapy treatment on friday too so that is great.
To keep in with the happy mood, i will leave you with a picture of some of my dinner on Wednesday....made me giggle....im so childish!!
x Lots of love x
Tuesday 5 April 2011
I cant see
Im writing this with blurry vision and seeing black splodges on the page so if spelling is not great or i make no sense at all, then that is why!!
Dont worry im not going blind, ive started those tablets i mentioned in my last post to treat a possible fungal infection in my naughty lungies. I started them friday and have been lightheaded and spaced out ever since :) For you CF people...yes it is Voriconazole.
I didnt do too much last week i dont think. Our front room got finished and looks prettiful and then I had 2 horrible days at home and Scotts. Lets just say without too much detail, that its girly week and was really heavy so I started to get abit worried. I just had to stay indoors really. Lovely!!
Saturday was a nice night though. Because of the above reason, i hardly slept friday night, so i slept in the day and caught up on some programmes and saved my energy for the evening. 7 of us went to the cinema and then out for dinner afterwards which was funny and a nice evening actually, although the boys can get quite loud!! :)
I got a phonecall from Harefield today too. All my test results that we had to wait 10 days for were back. All of them were fine and my antibodies (which needed to be low in order to go onto the next stage of transplant) were negative, so i have none!! Yay!! I was pleased everything else was ok and I am booked in for a 3 day assessment at Harefield on 6th June. I know my mum was very relieved as she worries more than she lets on!! She had a big block of 4 days off from the 6th anyway....it must be fate lol.
My head is going crazy to be honest. I am still living my life day to day but im now really thinking and analysing everything, even little things. It seems like everything i do at the moment, i look back and be honest with myself and think 'could i do this a year ago?' and if the answer is no, then i get upset but then thats replaced by a thought of 'well, after my transplant, i will be able to do that and more', so im then excited...is that the right word?? Hmmmm....im rambling now and its hard to explain, but im up and down in my head, full of questions which i will ask people, but more looking at myself. Maybe this is why I cant bloody sleep lol!!!
x Lots of love x
Dont worry im not going blind, ive started those tablets i mentioned in my last post to treat a possible fungal infection in my naughty lungies. I started them friday and have been lightheaded and spaced out ever since :) For you CF people...yes it is Voriconazole.
I didnt do too much last week i dont think. Our front room got finished and looks prettiful and then I had 2 horrible days at home and Scotts. Lets just say without too much detail, that its girly week and was really heavy so I started to get abit worried. I just had to stay indoors really. Lovely!!
Saturday was a nice night though. Because of the above reason, i hardly slept friday night, so i slept in the day and caught up on some programmes and saved my energy for the evening. 7 of us went to the cinema and then out for dinner afterwards which was funny and a nice evening actually, although the boys can get quite loud!! :)
I got a phonecall from Harefield today too. All my test results that we had to wait 10 days for were back. All of them were fine and my antibodies (which needed to be low in order to go onto the next stage of transplant) were negative, so i have none!! Yay!! I was pleased everything else was ok and I am booked in for a 3 day assessment at Harefield on 6th June. I know my mum was very relieved as she worries more than she lets on!! She had a big block of 4 days off from the 6th anyway....it must be fate lol.
My head is going crazy to be honest. I am still living my life day to day but im now really thinking and analysing everything, even little things. It seems like everything i do at the moment, i look back and be honest with myself and think 'could i do this a year ago?' and if the answer is no, then i get upset but then thats replaced by a thought of 'well, after my transplant, i will be able to do that and more', so im then excited...is that the right word?? Hmmmm....im rambling now and its hard to explain, but im up and down in my head, full of questions which i will ask people, but more looking at myself. Maybe this is why I cant bloody sleep lol!!!
x Lots of love x
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