It has been foooreverrrrr since I last blogged! I've just been feeling to crappy to write to be honest. A lot has happened in the last few weeks, including my friend Luke's bday party, which was sooooo fun; Alex's birthday and SURPRISE party that actually managed to stay a surprise :D; started Azithromisen again after about 5 years- I'm feeling a difference in my airways and the inflammation of them due to coughing is reduced :D; and most recently Alex passed his driving test! woooooo!!!! :D This will make life easier for use when I'm unwell and will give him more freedom and independence.
So presently, I've been in hosp again for 3 days and have signed up for my free month of Netflix and I'm relaxing :D It feels good not to have to cook, clean, wash clothes etc- like a mini-holiday in that sense ;) But there are the usual annoyances of hospital too, like not being able to see friends or family as much as usual, and sleeping in a strange, noisy place. However, Sarah makes it bearable. Sarah is the reflexologist who comes twice a week- she's like an angel!!! I always feel so relaxed once she's been :D
I'm hoping to try out the Vest whilst in here this time. As far as I know, it is like a life jacket type thing that you wear during physio. Not 100% sure what it does but my Papa really want me to try it out and there's no harm in trying! Thing is, the hospital are so reluctant for my to try is for some reason :S Don't know why seeing as it's not gunna hurt them for me to try it for 5 mins!
Ahh that's all for now, shall update you soooon :) loves xx
Wednesday, 11 July 2012
Tuesday, 26 June 2012
Frustrating!
Grrrrr so unwell at the moment! :( My chest was so good on holiday and the milli-second I step back into England I plummet back down :/ Can't stop coughing and it's knackering me out, was in bed all day Sunday and yesterday; also my appetite is getting worse :(
I let the hospital know that I wanted to go on the bed list, but as usual they made it hard and want me to go up there AGAIN to see the docs! Not even joking, in the last month I have been up there 7 times- that's about twice a week, surely they can just remember one of those 7 times to see that my chest is getting worse?! I think they think I'm made of money, and traveling to london and spending the whole day waiting around in a hospital is my idea of a good time :/ I must have spent about £100-£150 going up there this month with petrol, £3 an hour parking and the occasional drink/snack. So annoyed with them, it's just not what you need when you're feeling rough! grrrrrrrr
I let the hospital know that I wanted to go on the bed list, but as usual they made it hard and want me to go up there AGAIN to see the docs! Not even joking, in the last month I have been up there 7 times- that's about twice a week, surely they can just remember one of those 7 times to see that my chest is getting worse?! I think they think I'm made of money, and traveling to london and spending the whole day waiting around in a hospital is my idea of a good time :/ I must have spent about £100-£150 going up there this month with petrol, £3 an hour parking and the occasional drink/snack. So annoyed with them, it's just not what you need when you're feeling rough! grrrrrrrr
Thursday, 21 June 2012
Turkey 2012
It's been a while since I've last blogged, been busy sorting out and then being on my holiday wooooo :D Before the holiday, everything was a rush with the hospital and booking the oxygen for the airplane, didn't have time to come on here.
The holiday was AMAZING! Me, Alex, Emily and Billy went to Marmais, Turkey for 4 days; it was so hot- 54 degrees celsius! My chest was good out there too, the heat helps it and I cough so much less. Here's some pics of what we all got up to :) .......
The holiday was AMAZING! Me, Alex, Emily and Billy went to Marmais, Turkey for 4 days; it was so hot- 54 degrees celsius! My chest was good out there too, the heat helps it and I cough so much less. Here's some pics of what we all got up to :) .......
Me on the airplane with the overly expensive oxygen!
Me and Al on the beach
Restaurant
Bar
Jeep Safari
View of Marmais
In the sea
Me and Em on the jeep safari
Me at the hotel by the pool
Me and Em on the boat trip
On the edge of the boat
Tuesday, 5 June 2012
ANYWAYS
A busy week has been and gone, and I'm happy to say I can breathe again lol! My IVs have started to finally kick in, early days yet but it's so exciting when I start to feel better, because I can plan things and start up my life again. I'm going to go visit some dog kennels within the next week to see if there is any work going, whether it's voluntary or paid.
I need to work on my weight though, as after I reached the heaviest weight I'd ever been (48kg/7.5stones), I've plummeted back down to 45.5kg :'( sooooooo frustrating! It was such hard work just dragging it up to 48kg and in such little time it's dropped so much. But that's just one of the joys of CF lol, and I'm sure that other people with CF can relate to the frustration I'm feeling!
I still have just under a week left of IVs so hoping to improve even more :) fingers crossed.
Last week, in preparation for my holiday, I went for a fitness-to-fly test. I requested it just a few weeks ago and luckily they had a cancellation so I was able to have the test quickly- usually it can take 3 months just to receive an appointment. During the test, you sit in a small glass box with ECG wires, a carbon dioxide wire and oxygen level probes attached to you. You can't feel anything from them except the carbon dioxide wire heats up a bit so a bit of your arm goes warm. Next, the lung function/doctor person switches on a machine that sucks out the oxygen, to recreate the air inside an airplane that is something like 4,000 feet in the air. On ground level, the amount of O2 in the air is around 21% and up in an airplane it's around 15%. The lung function/doctor person had to switch on the 'emergency O2' because my sats had dropped to 82% (the lowest it is safe to be is 85%) and he said I had started to hyperventilate and my heart rate raised. To be honest, I didn't notice a thing! I just felt a bit sleepy but I didn't feel breathless or anything. Just goes to show that your body can go into 'emergency mode' without your mind really knowing what's happening or panicking. Anyway, basically from that it showed that I'm going to need O2 on the plane- which annoyingly the airlines can charge you an extra £150 for your ticket because of this! Talk about discrimination- it's not our fault we can't breathe! :/
I need to work on my weight though, as after I reached the heaviest weight I'd ever been (48kg/7.5stones), I've plummeted back down to 45.5kg :'( sooooooo frustrating! It was such hard work just dragging it up to 48kg and in such little time it's dropped so much. But that's just one of the joys of CF lol, and I'm sure that other people with CF can relate to the frustration I'm feeling!
I still have just under a week left of IVs so hoping to improve even more :) fingers crossed.
Last week, in preparation for my holiday, I went for a fitness-to-fly test. I requested it just a few weeks ago and luckily they had a cancellation so I was able to have the test quickly- usually it can take 3 months just to receive an appointment. During the test, you sit in a small glass box with ECG wires, a carbon dioxide wire and oxygen level probes attached to you. You can't feel anything from them except the carbon dioxide wire heats up a bit so a bit of your arm goes warm. Next, the lung function/doctor person switches on a machine that sucks out the oxygen, to recreate the air inside an airplane that is something like 4,000 feet in the air. On ground level, the amount of O2 in the air is around 21% and up in an airplane it's around 15%. The lung function/doctor person had to switch on the 'emergency O2' because my sats had dropped to 82% (the lowest it is safe to be is 85%) and he said I had started to hyperventilate and my heart rate raised. To be honest, I didn't notice a thing! I just felt a bit sleepy but I didn't feel breathless or anything. Just goes to show that your body can go into 'emergency mode' without your mind really knowing what's happening or panicking. Anyway, basically from that it showed that I'm going to need O2 on the plane- which annoyingly the airlines can charge you an extra £150 for your ticket because of this! Talk about discrimination- it's not our fault we can't breathe! :/
***** ADVERTISEMENT PLEASE READ! ;) *****
My lovely daddy designs board games with his older brother and best friend. A few admissions ago, I was bored out of my mind as usual and moaning about it. I really enjoy playing Scrabble, so my dad suggested I played Scrabble with myself during the days or play it on facebook against friends and family. I explained that it would be rubbish playing myself because it would just make me cheat and that I already play on facebook, but if the opponent isn't online at the same time, you can't have more than one go. So with this, he said he will try and think up a game for me to play in hospital.
A few weeks later, he came up with a game! Similar to Scrabble in the sense that you have tiles and make up words; but different to Scrabble in that you don't have to have a wide vocabulary or know long, complicated words. Therefore absolutely anyone can play and enjoy it!
You have 4 tiles that you pick out of two bags- vowels and consonants (so long gone are those Scrabble days of 7 vowels!) Then in each turn, you only put down one tile- this may sound impossible to create words from but the tiles make up the words any ways (the name of the game is ANYWAYS). So you can read them normally, backwards, up, down, diagonally... ANYWAYS :D
This may sound complicated, but here's a piccy of a little game I started with myself- yes, you can play it by yourself when you're bored in hospital :D This may make my bad explanation of the game a bit clearer...
If you can see, the words I have made are: rota, at, won, now, raw, war, toys, loop, pool, no
So thanks to my dad, I now have something I can do when I'm admitted to hospital, to take away the boredom :D If you know anyone who would benefit from this game or would like to have one yourself; whether it's for hospital, education or just fun, visit my dad's business website at http://www.ragnarbrothers.co.uk or ask me for details :)
Lovesss xxx
Tuesday, 29 May 2012
Allergic reaction
Haven't felt like blogging due to not feeling well :( last time I blogged, the hosp had put me on Chlorenphenacol antibiotics for 2 weeks, however last week I had a reaction to them and my whole face went red, itch, spotty and inflamed. It's still very itchy and inflamed and it looks like I have acne :( not a good move for the old confidence lol. Alex found it a time passer up at the hospital to COUNT the spots on my face!!! Thanks Al :/
So the hosp have given me E45 cream to try and get rid of my reaction and I'm now back on home IV's. I just hope soooo bad that they work and work quick because I'm hoping to go on a last minute holiday with Alex and my friends Emily and Billy in 3 weeks- fingers crossed!
Just a short blog today, going to back to bed to rest up and try and get better asap :)
lovess xx
You can kinda see the remains of my rash in this photo
So the hosp have given me E45 cream to try and get rid of my reaction and I'm now back on home IV's. I just hope soooo bad that they work and work quick because I'm hoping to go on a last minute holiday with Alex and my friends Emily and Billy in 3 weeks- fingers crossed!
Just a short blog today, going to back to bed to rest up and try and get better asap :)
lovess xx
Tuesday, 15 May 2012
Discover Dogs
I'm still awake at 9:10pm, which has been rare for the last few days! My chest has become a lot worse thanks for the stupid pseudomonas that I have; it's the bug I "home" in my lungs but I can't get rid of it. My chest reminds me of a rechargeable battery: by going on IVs I'm recharging it and then I'm using myself, like waiting for the energy to run low before I need to "charge" it up again.
This time the symptoms were more or less the same as usual: breathlessness, increased coughing, less appetite, more sleepy. However during last night I also had some chest pains in my right lung :/ I hardly ever get this and I never really know why I do. I've been getting it when I'm coughing hard, feels like a bruise.
Yesterday I went to Brompton for my appointment. My FEV1 had decreased to 69% from 84% and my FEV2 had only dropped to 94% from 96%. Sadly the hosp aren't too bothered about FEV2- otherwise they'd be really pleased with me lol! Sats had dropped to 95% too, still OK but not perfect. They've put me on oral medication so hopefully I won't be needing IV's for a while. However, amazing news was that my weight had gone up to 48kg!!!!!! :D :D I've never ever ever been this heavy in all my life, so happy! I proudly weigh 7 and 1/2 stones. It's so difficult for people with CF to put on weight and it makes me so self conscious of how thin I look. I'd love to be fat and actually have to diet lol :P
Other than hospital stuff, I also went to the London Pet Show this week. I loved it! My favourite section was obviously the Discover Dogs. Here are some piccys of me at the Pet Show.
Either last weekend or the weekend coming up (sorry Debbie, I've forgotten which one!) My aunty Debbie has/is running AGAIN to raise money for Cystic Fibrosis. If you want to be generous and sponsor her, her link is http://uk.virginmoneygiving.com/DebbieTrigg
For the week ahead, I hope that the weather cheers up and summer can finally start. Also, this time next week, we'll know whether or not Alex has passed his practical driving test (fingers crossed!) Also, I might apply for a job working with my mama! :D It's for a receptionist job at a doctors surgery so I'll need to think about whether it would be suitable for me to work there and stuffsss...
Speak next week, loves xxx
This time the symptoms were more or less the same as usual: breathlessness, increased coughing, less appetite, more sleepy. However during last night I also had some chest pains in my right lung :/ I hardly ever get this and I never really know why I do. I've been getting it when I'm coughing hard, feels like a bruise.
Yesterday I went to Brompton for my appointment. My FEV1 had decreased to 69% from 84% and my FEV2 had only dropped to 94% from 96%. Sadly the hosp aren't too bothered about FEV2- otherwise they'd be really pleased with me lol! Sats had dropped to 95% too, still OK but not perfect. They've put me on oral medication so hopefully I won't be needing IV's for a while. However, amazing news was that my weight had gone up to 48kg!!!!!! :D :D I've never ever ever been this heavy in all my life, so happy! I proudly weigh 7 and 1/2 stones. It's so difficult for people with CF to put on weight and it makes me so self conscious of how thin I look. I'd love to be fat and actually have to diet lol :P
Other than hospital stuff, I also went to the London Pet Show this week. I loved it! My favourite section was obviously the Discover Dogs. Here are some piccys of me at the Pet Show.
Me and a golden retriever
Me and a sausage dog!
GO DEBBIEEEE!
Speak next week, loves xxx
Saturday, 5 May 2012
Boris!
This last week and a half has been busy! We've had some very exciting news, a new addition to the family :) (no, not a baby) a hamster who we've named Boris! Me and Al adopted him from our friend Charlotte. He's so sweet, and so fidgety. Techinicallyyyy, we're not allowed pets in our flat, but the neighbors have a cat so we thought we could have one little hamster ;) here's some pics of him.
Our friend Charlotte, who gave us Boris, has a wee baby too! We see her and Riley-Jack most weeks, and she recently asked me and Al to be his Godparents!! :D We're so excited. Riley is about 4 months old now <3
More amazing news for me is that I have FINALLY finished my A levels woooooo!!!!! :D Felt so great to hand in my final piece of coursework. Next, I'm going to look for either paying or voluntary work in a dogs kennels or a dogs rescue and rehoming centre :) fingers crossed I can find something!
Time for a rant :)...
Alex is currently down as my full time carer because he's with me "for at least 35 or 40 hours a week" (can't remember which it is), and because he helps me with everything I can't do when I'm ill; from pushing me in my wheelchair to helping me have a bath. The government are supposed to give him £55.55 a week for doing this- which in my opinion isn't enough to live on seeing as the government say that "a person can live on £62 per week" :S ... Anyway, for the last 7 weeks, they haven't given him any money! I don't think they realise that without money you literally cannot live. If he weren't living with me, and we didn't share everything, he wouldn't even have anything to EAT! So naturally, thanks to the poxy carers scheme, we are pretty skint until he starts getting paid again. Plus they said they aren't going to backdate him :/ grrrr!!!!
Anyway, rant over :) On the bright side, it's not long until Alex has his driving test- hopefully he will pass, then he can do all the driving when I'm ill instead of me coughing the whole time and probably being dangerous on the roads.
My health has really gone down fast in the last week :( I'd managed 4 weeks without being ill- it seemed like a lot longer though thankfully :) I've got a hospital appointment on 14th, but I may try and change it for sometime this week if I deteriorate anymore this weekend.
Will let you know next week ;)
Lovessss xxx
Our friend Charlotte, who gave us Boris, has a wee baby too! We see her and Riley-Jack most weeks, and she recently asked me and Al to be his Godparents!! :D We're so excited. Riley is about 4 months old now <3
Little baby RJ
Me and Charlotte
Time for a rant :)...
Alex is currently down as my full time carer because he's with me "for at least 35 or 40 hours a week" (can't remember which it is), and because he helps me with everything I can't do when I'm ill; from pushing me in my wheelchair to helping me have a bath. The government are supposed to give him £55.55 a week for doing this- which in my opinion isn't enough to live on seeing as the government say that "a person can live on £62 per week" :S ... Anyway, for the last 7 weeks, they haven't given him any money! I don't think they realise that without money you literally cannot live. If he weren't living with me, and we didn't share everything, he wouldn't even have anything to EAT! So naturally, thanks to the poxy carers scheme, we are pretty skint until he starts getting paid again. Plus they said they aren't going to backdate him :/ grrrr!!!!
Anyway, rant over :) On the bright side, it's not long until Alex has his driving test- hopefully he will pass, then he can do all the driving when I'm ill instead of me coughing the whole time and probably being dangerous on the roads.
My health has really gone down fast in the last week :( I'd managed 4 weeks without being ill- it seemed like a lot longer though thankfully :) I've got a hospital appointment on 14th, but I may try and change it for sometime this week if I deteriorate anymore this weekend.
Will let you know next week ;)
Lovessss xxx
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