Last week i didnt do too much to shout about really...just the usual treatments, physio...blah,blah,blah...i did go shopping as it was my mate's birthday so she needed lots of presents and i also popped into the nursery to see everyone...it looks lovely as they have done it all up...i got upset when i left as i miss it so much (the job and the people).
Monday I went for lunch with steph and then had an appointment at the jobcentre for a interview about applying for ESA - employment and support benefit. That was a waste of time as i just basically repeated what i had wrote on the form and told them that i sent of the medical questionnaire last week. I have to get a letter from the hospital saying why i cant work and then wait to hear from the jobcentre again. How the hell to people cheat the benefit people when i have to fight this hard for a geniuine claim!!
Today was hospital. Lets start with the good news.....my lung function has gone up....yyyaaaaaayyyyy!!!! Only a small increase from 20 - 24% but still in the right direction and this makes me want to work even harder. Weight stayed the same but they were happy with that and i did have an amazing bellyache yesterday so dont think that helped. The only worrying part was my PEG. It has to be turned once a week so when Lance turned it, it turned all the way round but then hurt abit and sprung back. Apparantly this means that there is an obstruction and that may mean my stomach has started to grow over the peg. If this totally happens, then the peg will have to be changed. Joy! Therefore, panic has started to set in...im trying hard not to think about it but watch this space :(
All in all, i am happy though! Have more energy and am up and about everyday wanting to do stuff, even if it is just cleaning the house lol. Not much planned for this week except more exercise!! Go me!!
x Lots of love x
Tuesday, 30 March 2010
Sunday, 21 March 2010
x Our little holiday x
Me and Scott got a cheap holiday away to Dymchurch and have just got back so I will tell you about it!
The holiday was from Monday to Friday but Scotts dad paid for us to stay in a Premier Inn in Hastings for the weekend. We got there at about 6pm saturday and went straight out to dinner and then had move the whole room around (dunno if that was allowed lol) because i had to be near a plug socket so i could have my overnight feed. Scott also had to get up at 6am to go out to reception to get my iv's out of the fridge - he is great :) Sunday we went into Hastings and looked around the shops and arcade then came back. We then read the papers, watched television, went out for dinner and then settled down for the night to watch 'Snakes on a plane'....this film is definatly not reccommended as its highly poop!
Monday we had to be out the room by midday and couldnt get in the caravan until 4pm so we headed off to a town nearby the site and found a Tescos and stocked up on food for the caravan. There was a river running past the back of Tescos so we took some bread and feed the ducks but got chased by seagulls too (now, i say chased, but i dont run so what i really did was sit there and scream lol).
Tuesday we went to Port Lymphe which is a big wildlife park. We got a safari bus to take us round to see most of the animals or i wouldnt have managed it and then they told us the gorillas were being fed. We walked down a big hill to the bottom of the park, watched the gorillas and then i realised i had to get back up the hill to go home. Oh dear!! God knows what other people must of thought of me and Scott...1st Scott was pulling me up the hill, then we walked up it sideways so it didnt feel like you was walking up a hill, and finally Scott went behind me and pushed me up...hahaha! Needless to say, I was absolutly shattered but was proud of myself! That night, my bloody feed machine kept beeping for no reason and nothing was wrong. I rang the helpline and they said it must be the pump and that they would send another one out, to which, i had to reply that i wasnt at home and that i was in a caravan in Dymchurch. The pump got delivered the next morning to reception and worked fine after that, but how bloody embarassing!!!
Wednesday was rest day! We ate lots, watched dvds and read books and magazines and then that night, we drove to the cinema to watch 'The Bounty Hunter' which was good :) For our last day, Thursday, we went into Ashford to a shopping centre and had a nice time around there and then spent the night watching tv and packing. Friday we left by 10am and got breakfast on the way home and before I went home, I had to go hospital.
All was well at the hospital. My sats were back to my normal of 92/93, and i had put on 2kg in a week so now weigh 45.2kg :) My lung function hadnt gone up which i wasnt happy with but it WILL go up...just wait and see!
So after the toughness of the last month, it was a great break away and me and Scott didnt kill each other so thats a good sign! I wouldnt go back to that caravan site, but it was nice to have experienced it, and it just shows that if you love someone that much, it doesnt matter where you are, you can still laugh and have a good time.
x Lots of love x
The holiday was from Monday to Friday but Scotts dad paid for us to stay in a Premier Inn in Hastings for the weekend. We got there at about 6pm saturday and went straight out to dinner and then had move the whole room around (dunno if that was allowed lol) because i had to be near a plug socket so i could have my overnight feed. Scott also had to get up at 6am to go out to reception to get my iv's out of the fridge - he is great :) Sunday we went into Hastings and looked around the shops and arcade then came back. We then read the papers, watched television, went out for dinner and then settled down for the night to watch 'Snakes on a plane'....this film is definatly not reccommended as its highly poop!
Monday we had to be out the room by midday and couldnt get in the caravan until 4pm so we headed off to a town nearby the site and found a Tescos and stocked up on food for the caravan. There was a river running past the back of Tescos so we took some bread and feed the ducks but got chased by seagulls too (now, i say chased, but i dont run so what i really did was sit there and scream lol).
Tuesday we went to Port Lymphe which is a big wildlife park. We got a safari bus to take us round to see most of the animals or i wouldnt have managed it and then they told us the gorillas were being fed. We walked down a big hill to the bottom of the park, watched the gorillas and then i realised i had to get back up the hill to go home. Oh dear!! God knows what other people must of thought of me and Scott...1st Scott was pulling me up the hill, then we walked up it sideways so it didnt feel like you was walking up a hill, and finally Scott went behind me and pushed me up...hahaha! Needless to say, I was absolutly shattered but was proud of myself! That night, my bloody feed machine kept beeping for no reason and nothing was wrong. I rang the helpline and they said it must be the pump and that they would send another one out, to which, i had to reply that i wasnt at home and that i was in a caravan in Dymchurch. The pump got delivered the next morning to reception and worked fine after that, but how bloody embarassing!!!
Wednesday was rest day! We ate lots, watched dvds and read books and magazines and then that night, we drove to the cinema to watch 'The Bounty Hunter' which was good :) For our last day, Thursday, we went into Ashford to a shopping centre and had a nice time around there and then spent the night watching tv and packing. Friday we left by 10am and got breakfast on the way home and before I went home, I had to go hospital.
All was well at the hospital. My sats were back to my normal of 92/93, and i had put on 2kg in a week so now weigh 45.2kg :) My lung function hadnt gone up which i wasnt happy with but it WILL go up...just wait and see!
So after the toughness of the last month, it was a great break away and me and Scott didnt kill each other so thats a good sign! I wouldnt go back to that caravan site, but it was nice to have experienced it, and it just shows that if you love someone that much, it doesnt matter where you are, you can still laugh and have a good time.
x Lots of love x
Friday, 19 March 2010
x A month later.... x
Finally, after just over a month, I am home!!
I was not allowed home for ages!!! Bloody trapped air!! I felt fine but my sats were saying another thing. A 'normal' persons sats are about 97-100. Mine, when feeling well sit at about 92. The machine beeps at you telling you that oxygen is needed at 89. Mine was ranging from 85 and even dropped to 74 when waking up!!! How ridiculous and scary - no-one could understand it or give me any answers which made it more frustrating. The last week, I cried alot and felt so fed up. I tried really hard but thankfully, the air started to show signs of going down and by my discharge, my sats were, at their lowest 88.
I went home with oxygen (just incase)and ready to start weight gain and keep exercising!! Got home and went straight to bed as it was 10pm and went to set up the feed and they had sent the wrong tubes. The tubes i got were for a different pump so we had to ring the emergency helpline who eventually delivered at 3am!! What a great 1st night home!!
As soon as i got up, i booked my hair in and also unpacked my hospital bags and then packed them again because me and Scott managed to get a cheap holiday and we were leaving in a few days!!
I was not allowed home for ages!!! Bloody trapped air!! I felt fine but my sats were saying another thing. A 'normal' persons sats are about 97-100. Mine, when feeling well sit at about 92. The machine beeps at you telling you that oxygen is needed at 89. Mine was ranging from 85 and even dropped to 74 when waking up!!! How ridiculous and scary - no-one could understand it or give me any answers which made it more frustrating. The last week, I cried alot and felt so fed up. I tried really hard but thankfully, the air started to show signs of going down and by my discharge, my sats were, at their lowest 88.
I went home with oxygen (just incase)and ready to start weight gain and keep exercising!! Got home and went straight to bed as it was 10pm and went to set up the feed and they had sent the wrong tubes. The tubes i got were for a different pump so we had to ring the emergency helpline who eventually delivered at 3am!! What a great 1st night home!!
As soon as i got up, i booked my hair in and also unpacked my hospital bags and then packed them again because me and Scott managed to get a cheap holiday and we were leaving in a few days!!
Monday, 1 March 2010
x Still here x
3 weeks has gone and today I should be packing up my stuff and going home...that is not happening :(
Im fed up, still in mild pain, lonely and want to go home. I cant be bothered to write a full blog so will just pinpoint the main goings on. Well I did it and i had my peg fitted which is a tube into your stomach so that you can be fed overnight inorder to boost the amount of calories i have. Everything went to plan and after 2 days i finally plucked up the courage to look at it and touch it :)
There was a problem because my body inbetween my bottom of my lungs and stomach, lots of air had been trapped and they were worried that it was a leak from somewhere but it turns out it was just trapped from where they put the peg in so no more worries. The pain is still there after a week and dont even get me started on having to cough - it feels like someone is knifing me in the stomach each time. Bring on the painkillers!!
Because of the trapped air and i had a small lot of crap stuck in my lungs, my sats were dropping to 84 off the oxygen but the air is going down and i managed to shift some cap and today, i came off the oxygen :) yay!!! These are the reasons why i havent been allowed to go home yet. Even worse, is that the hospital is locked down with the norovirus so all visitors are banned, so im highly bored, lonely and fed up. Hopefully i will make it home in the next few days and will write to you all again soon and include pics of my new wound :)
If you're reading this, i just want to say thanks to my CF mates who helped put my mind at ease about having this done as i was terrified and just hope i manage to cope when i get home xx
x Lots of love x
Im fed up, still in mild pain, lonely and want to go home. I cant be bothered to write a full blog so will just pinpoint the main goings on. Well I did it and i had my peg fitted which is a tube into your stomach so that you can be fed overnight inorder to boost the amount of calories i have. Everything went to plan and after 2 days i finally plucked up the courage to look at it and touch it :)
There was a problem because my body inbetween my bottom of my lungs and stomach, lots of air had been trapped and they were worried that it was a leak from somewhere but it turns out it was just trapped from where they put the peg in so no more worries. The pain is still there after a week and dont even get me started on having to cough - it feels like someone is knifing me in the stomach each time. Bring on the painkillers!!
Because of the trapped air and i had a small lot of crap stuck in my lungs, my sats were dropping to 84 off the oxygen but the air is going down and i managed to shift some cap and today, i came off the oxygen :) yay!!! These are the reasons why i havent been allowed to go home yet. Even worse, is that the hospital is locked down with the norovirus so all visitors are banned, so im highly bored, lonely and fed up. Hopefully i will make it home in the next few days and will write to you all again soon and include pics of my new wound :)
If you're reading this, i just want to say thanks to my CF mates who helped put my mind at ease about having this done as i was terrified and just hope i manage to cope when i get home xx
x Lots of love x
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