The title will explain itself in a minute!!
Monday was a write-off because of the immense bellyache which lasted all day...i even had a bath as the warm water helps the pain but i hate baths...i get bored after 10 mins! I went to set up my feed pump at 11pm that night and set the rate (to tell it how fast to go) and then set it to run so the feed would reach the end of the tube. It didnt run. I went to turn it off to start again and even when it was off it showed the rate on screen - it had frozen. I got the book out and as i was trying to find out what to do, the pump started flashing and beeping even though it was off!! There was nothing about it in the book so i rang the emergency helpline and they said i would need a new pump. The fault is apparently very rare and she had only heard it happen to one other woman - oh surprise surprise!!
I said i wasnt waiting up for a emergency overnight delivery and that missing one feed wouldnt hurt so i scheduled it for 9am. We had to wrap up the pump in a duvet and stash it in the cupboard so we couldnt hear the beeping. The battery only lasts a few hours so it would die during the night - however, not in my bloody case!! Mum got it out in the morning ready for them to pick it up and it was STILL beeping - how is this happening???? Anyway they didnt come until 1pm so by this time i was ready to throw it out the door and the driver had the cheek to say "that will annoy me".
Later that day i had hospital clinic and it was another success!! 2 good clinics in a row - im not used to that! My weight had gone from 46kg to 47.1kg (3kg to my target!!) and my lung function had stayed stable at 26% which i was happy with as it meant it wasnt a fluke! I had to have a trial for a new nebuliser which is called Bramitob and they had to check my lung function before, 15 mins after and then 30 mins after. After i was bloody knackered, 8 lung functions!! Fun times. The nebuliser didnt give me a reaction so its ok for me to have but i have to get used to the taste - its horrid and tastes like feet :( and like im inhaling hairspray! Me and mum celebrated by going Lakeside shopping and i brought a hat lol x
x Lots of love x
Thursday 30 September 2010
Monday 27 September 2010
I CAN NOT work!!!!
How many more times does this fucking job centre need to be told!! As i said before, i was put into the 'back to work' group for employment and support benefit when i should have been put in the support group - which means i can not work. I sent in my appeal at the beginning of August and was told to wait and hear from them....then a few days ago i get a letter telling me to attend a interview at 10am in the morning to start my plan on getting back to work! I am quite capable of getting a job and know full well the benefits of work so I dont need to be sat down and told that thanks!!
I rang them up and said i was appealling so surely i shouldnt have to go to anything until a verdict had been decided but apparently i do and if i dont go they will reduce or even stop my money which i am not going through again. Thats it you stop my benefit and give it to some foreigner who has just come to England or some lazy wankstain who cant be arsed to get a job so fakes a bad back....genuine claims are not easy!
So that was 2 days spent on the phone and i didnt end up going and asked them to change the time as it was too early and i wasnt feeling great (which was true) and they never got back to me, so thats not my problem! Had a good weekend up the pub with my dad on saturday and football on sunday which took me hours to defrost from after getting home.
Today my stomach is soooo bad and i have come to the conclusion that it was because of a dodgy hotdog i ate at the football ground - i am also blaming the food poisoning on Scott as he didnt take me mcdonalds breakfast like i asked, so i resorted to buying a hotdog from a little man in a hut! This is great news the day before clinic!!
x Lots of love x
I rang them up and said i was appealling so surely i shouldnt have to go to anything until a verdict had been decided but apparently i do and if i dont go they will reduce or even stop my money which i am not going through again. Thats it you stop my benefit and give it to some foreigner who has just come to England or some lazy wankstain who cant be arsed to get a job so fakes a bad back....genuine claims are not easy!
So that was 2 days spent on the phone and i didnt end up going and asked them to change the time as it was too early and i wasnt feeling great (which was true) and they never got back to me, so thats not my problem! Had a good weekend up the pub with my dad on saturday and football on sunday which took me hours to defrost from after getting home.
Today my stomach is soooo bad and i have come to the conclusion that it was because of a dodgy hotdog i ate at the football ground - i am also blaming the food poisoning on Scott as he didnt take me mcdonalds breakfast like i asked, so i resorted to buying a hotdog from a little man in a hut! This is great news the day before clinic!!
x Lots of love x
Monday 20 September 2010
x Just plodding along x
Erm....not really much to write i dont think.
Ive been having my feeds, doing my physio (but am going to attempt to do more!!) and taking my tablets like a good little CF patient. Actually a few little things have happened while i think back over last week lol...
1...my car went in for its 1st service.
2...me and scott went to the pictures twice this week - once on wednesday to see Grown Ups and then on friday with a few of the boys to see The Other Guys. Both were funny films so they were fun nights out.
3...I woke up on wednesday with no energy and only just started to feel my 'normal' self again on sunday. I dont know where it went and i was starting to worry but i seem to be back on track. I have a bit of a cough so it may have been linked to that but ive tried to get rid of all the crap in my chest and its seems to be not too bad at the moment.
I was supposed to go hospital checkup tomorrow but its really packed so they have changed it to next week which i dont mind. Another week to keep trying to get fat and fit!!! We are starting to decorate downstairs so im off to start stripping wallpaper while mummy is at work! Busy day ahead!!
x Lots of love x
Ive been having my feeds, doing my physio (but am going to attempt to do more!!) and taking my tablets like a good little CF patient. Actually a few little things have happened while i think back over last week lol...
1...my car went in for its 1st service.
2...me and scott went to the pictures twice this week - once on wednesday to see Grown Ups and then on friday with a few of the boys to see The Other Guys. Both were funny films so they were fun nights out.
3...I woke up on wednesday with no energy and only just started to feel my 'normal' self again on sunday. I dont know where it went and i was starting to worry but i seem to be back on track. I have a bit of a cough so it may have been linked to that but ive tried to get rid of all the crap in my chest and its seems to be not too bad at the moment.
I was supposed to go hospital checkup tomorrow but its really packed so they have changed it to next week which i dont mind. Another week to keep trying to get fat and fit!!! We are starting to decorate downstairs so im off to start stripping wallpaper while mummy is at work! Busy day ahead!!
x Lots of love x
Monday 13 September 2010
I did NOT say that....
Thursday turned into madness and i had calls, emails, texts and facebook messages from loads of people and am still getting some now. I just want to say thank you to everyone for your nice words they really mean alot. I was pleased with the article but feel it could have been written abit better...i certainly did not say "make me a woman" lol how gay is that!!! I prob said to the woman that i look about 12 (which i do) and that has been translated into that title and i also 'said' "my child-like frame" - cheek :) I also laughed at the bit where they said that "i pour fluid down my tube" as if i just find any old liquid and bloat myself out!! I wasnt well when i had the pictures done and was on iv's but they werent too bad - thank god for make up aye!!
I didnt do it for me though, i did it to raise awareness of CF. I definatly did this as most of the messages i got said that they didnt realise what CF was, how bad it was or that i even had it :) Many people have said how brave i am and that i am inspiration but im really not - im used to this way of life and it would be strange for me not to have to do treatment, tablets or go hospital. Although i obviously wouldnt wish it on anyone, i have met and lost some wonderful people with CF and i look up to some of them in how they deal with worse things than i have dealt with. They are my inspiration.
The weekend was a normal weekend which involved the pub and football. The boys won. The only bad thing about the weekend was the bad stomach cramps - yes its girly week and yes - it bloody hurts!!
x Lots of love x
I didnt do it for me though, i did it to raise awareness of CF. I definatly did this as most of the messages i got said that they didnt realise what CF was, how bad it was or that i even had it :) Many people have said how brave i am and that i am inspiration but im really not - im used to this way of life and it would be strange for me not to have to do treatment, tablets or go hospital. Although i obviously wouldnt wish it on anyone, i have met and lost some wonderful people with CF and i look up to some of them in how they deal with worse things than i have dealt with. They are my inspiration.
The weekend was a normal weekend which involved the pub and football. The boys won. The only bad thing about the weekend was the bad stomach cramps - yes its girly week and yes - it bloody hurts!!
x Lots of love x
Thursday 9 September 2010
So much happiness and nervousness this week
My emotions are all over the place this week!! Dont worry though, its mostly good emotions for a change!!
Tuesday was hospital clinic and mummy had the day off so came with me. I was nervous at what my weight would be (as i had a bellyache for the past few days) and what the lung function would be as im worried about it being only 20%. My weight was up to 46kg so I was pleased but that wasnt even the best bit - my lung function had gone up to 26% and thats the best its been since last November!!!! :D :D
I came out of the room and cried which I think was shock and relief. Now I know that my lung function is still low and I still have to work my little (but getting increasingly bigger) arse off to keep it there or even get it up some more....but the fact that it was able to go up is nice to know. I was so worried that after the last few months and all the problems, that it had damaged my lungs and that they may not be able to improve....now I wonder if I could push my luck and reach 30%....that would be amazing!!
I also asked the physio about different physio methods...im on the waiting list for the acapella which is another device to strengthen your breathing and getting up the crap on your chest and she was going to teach me the breathing techniques but i can not huff properly lol....so we decided to leave it!! My cough tends to be tickly so can last for bloody ages and this has something to do with my sinuses. I started a nose spray about 2 weeks ago but had also heard about a nose wash called sinus rinse from neilmed. The physio said she was just given a prototype and that i could have it so i have that to try too.
Wednesday was a good day too. I went yoga with mummy for the 1st time...i couldnt do all of the moves (??? is that what you call them lol) because of my PEG and my inability to bend certain ways but i am pleased with myself. The class was an hour and a half and i had to stop throughout because of tiredness or coughing. I also couldnt keep up with the breathing - asking me to hold my breath and breathing when told to is not comfortable and i thought the lady was trying to kill me at first but i did what i could...im sure it will get easier and i will be able to do more as i keep going. We came straight home, i headed for the fridge, had a mars bar and then headed for the sofa and slept for a hour!! :)
Today...so far is absolute madness!! My article in 'Love It' magazine came out today and i was woken up by my little bro, Danny at 8am waving the magazine in my face. He had gone out early to buy it, bless him :) I am pleased with the article and am happy that it highlighted CF and gave a link to the trust. The pics are ok - i didnt see them before and i was on iv's at the time so wasnt well - the joys of make-up!! xx Will write more on it later xx
x Lots of love x
Tuesday was hospital clinic and mummy had the day off so came with me. I was nervous at what my weight would be (as i had a bellyache for the past few days) and what the lung function would be as im worried about it being only 20%. My weight was up to 46kg so I was pleased but that wasnt even the best bit - my lung function had gone up to 26% and thats the best its been since last November!!!! :D :D
I came out of the room and cried which I think was shock and relief. Now I know that my lung function is still low and I still have to work my little (but getting increasingly bigger) arse off to keep it there or even get it up some more....but the fact that it was able to go up is nice to know. I was so worried that after the last few months and all the problems, that it had damaged my lungs and that they may not be able to improve....now I wonder if I could push my luck and reach 30%....that would be amazing!!
I also asked the physio about different physio methods...im on the waiting list for the acapella which is another device to strengthen your breathing and getting up the crap on your chest and she was going to teach me the breathing techniques but i can not huff properly lol....so we decided to leave it!! My cough tends to be tickly so can last for bloody ages and this has something to do with my sinuses. I started a nose spray about 2 weeks ago but had also heard about a nose wash called sinus rinse from neilmed. The physio said she was just given a prototype and that i could have it so i have that to try too.
Wednesday was a good day too. I went yoga with mummy for the 1st time...i couldnt do all of the moves (??? is that what you call them lol) because of my PEG and my inability to bend certain ways but i am pleased with myself. The class was an hour and a half and i had to stop throughout because of tiredness or coughing. I also couldnt keep up with the breathing - asking me to hold my breath and breathing when told to is not comfortable and i thought the lady was trying to kill me at first but i did what i could...im sure it will get easier and i will be able to do more as i keep going. We came straight home, i headed for the fridge, had a mars bar and then headed for the sofa and slept for a hour!! :)
Today...so far is absolute madness!! My article in 'Love It' magazine came out today and i was woken up by my little bro, Danny at 8am waving the magazine in my face. He had gone out early to buy it, bless him :) I am pleased with the article and am happy that it highlighted CF and gave a link to the trust. The pics are ok - i didnt see them before and i was on iv's at the time so wasnt well - the joys of make-up!! xx Will write more on it later xx
x Lots of love x
Monday 6 September 2010
x Looking good (apparently)!! x
I have actually had a great weekend even though I havent done anything spectacular.
I have been really cheered up and now feel positive that things are moving in the right direction because.....6 different people have commented on how well i look over the past few days....result!!
The first 2 were at the pub when i went on Saturday. 1 of them was a regular who i hadnt seen since last week and the 2nd was my daddy (even though i had seen him the day before lol). The best bit about these comments was...that i had no make-up on and my hair was scraped back as i had a wedding to go to that evening so hadnt bothered to get fully ready as i was saving it until that evening.
The next one was at the wedding reception that night. One of Scotts family members said I looked well. I havent seen him in months so i prob did look different but it was still nice of him to say so! It was Scott's cousins wedding and was a lovely evening and was really nice to see his family again. We left abit earlier then I wanted to as we had to be up early for football and I was hungry so stopped of for chippys!
The 4th person was Scotts mate. We got back from the wedding and 2 of his mates were staying over as they were all going footie the next day and we walked in from the wedding and he looked at me a few times. I saw him 2 weeks ago and since then he said that I had put on weight...he also said i was the only girl he could say that to without getting a punch in the face lol...so that made me laugh.
The last 2 people were family friends who live near me. I only saw them about a week ago but they still said i looked more like 'the old Soph' so that was nice to hear too! So a good weekend all round and its things like this that make me want to continue doing everything i can and more...i dont respond to shouting and people pushing me as i shut off and tend to go the opposite way!
Sunday is normally a chill out day but it was Scotts first match of the season so I dragged myself out of my pit early to go and watch. It was the furthest pitch away so that was my physio for the day!! It was a good match and I enjoy football but even though it wasnt bad weather, I was still cold so have brought myself a coat this morning which I love :)
x lots of love x
I have been really cheered up and now feel positive that things are moving in the right direction because.....6 different people have commented on how well i look over the past few days....result!!
The first 2 were at the pub when i went on Saturday. 1 of them was a regular who i hadnt seen since last week and the 2nd was my daddy (even though i had seen him the day before lol). The best bit about these comments was...that i had no make-up on and my hair was scraped back as i had a wedding to go to that evening so hadnt bothered to get fully ready as i was saving it until that evening.
The next one was at the wedding reception that night. One of Scotts family members said I looked well. I havent seen him in months so i prob did look different but it was still nice of him to say so! It was Scott's cousins wedding and was a lovely evening and was really nice to see his family again. We left abit earlier then I wanted to as we had to be up early for football and I was hungry so stopped of for chippys!
The 4th person was Scotts mate. We got back from the wedding and 2 of his mates were staying over as they were all going footie the next day and we walked in from the wedding and he looked at me a few times. I saw him 2 weeks ago and since then he said that I had put on weight...he also said i was the only girl he could say that to without getting a punch in the face lol...so that made me laugh.
The last 2 people were family friends who live near me. I only saw them about a week ago but they still said i looked more like 'the old Soph' so that was nice to hear too! So a good weekend all round and its things like this that make me want to continue doing everything i can and more...i dont respond to shouting and people pushing me as i shut off and tend to go the opposite way!
Sunday is normally a chill out day but it was Scotts first match of the season so I dragged myself out of my pit early to go and watch. It was the furthest pitch away so that was my physio for the day!! It was a good match and I enjoy football but even though it wasnt bad weather, I was still cold so have brought myself a coat this morning which I love :)
x lots of love x
Thursday 2 September 2010
x What do you do all day? x
I frigging hate this question!! Just because i dont work doesnt mean i sit in the chair and watch tv all day...the day goes so quick and most of it is spent doing CF stuff to be honest.
I get up at the latest half 9, cough because laying down all night means all the crap sits on my chest and then go downstairs. I have my tablets and morning nebuliser and then have breakfast. I then have another nebuliser (Dnase) which i have an hour before physio as it thins out the mucus so i can cough it out easier. While Im waiting for that hour I get dressed and ready (which if im not well or tired is a big effort in itself). Then comes the physio and lasts as long as it takes to bring up however much shit is on my chest. This kills me and tires me out so i have a rest for a while and then its lunchtime!!
I normally have 2 cooked meals a day so by the time i have cooked and eaten my lunch an hour has gone. Then i have a couple of hours in the afternoon to actually get 'normal' jobs done such as ironing, cleaning, shopping....and then everyone finishes work!! I have to have dinner by at least 7 otherwise i still feel really full up when i start my overnight feed. Normally start my feed by 11pm and this can finish by about 3 or 4 in the morning depending on how fast i have it running through. I never have a full, uninterrupted nights sleep.
So THAT's what I do all day....but i admit that when i do have a bad day or feel ill, i will take ages to do things and may spend longer sitting in a chair or in bed than i should because i physically have no energy to get up and that is not laziness!! That was not a rant though, its just people have asked me that question alot lately and make it sound like i do nothing when it takes alot to look after myself.
I got my new feed delivered on Tuesday and there is frigging loads of it!! I have a pretty new pink 4 drawer plastic storage system to put it in but it still doesnt all fit! Because the homecare people want to make things as difficult as possible, I get 200ml bottles of feed but need 1000ml overnight so I have been given 1000ml empty bottles and have to pour in 5 of the little bottles and then connect the tubes and hang it up. Why it cant come in 1 litre bottles already, i dont know! I had the first lot that same night, did it a bit slower than normal so i get used to it and it all went fine :) so i now get 2000 calories overnight...greedy bitch ;)
Yesterday I stopped in at my old work at the nursery and its all been decorated and moved round and looks lovely. I spent ages in there catching up with everyone and sooooo want to go back - i miss them all! We are hopefully all going to go out again soon which I really hope happens.
Scotts mummy and daddy have gone on holiday for a week to Eygpt so he has the house to hisself. I am attempting my feed at his for the first time as i was abit scared before because of the doggies but we have worked out a solution!! I packed up all my stuff last night (i had so much stuff it looked like i was moving) and went to his...i had everything...pump, tubes, syringes, pjs BUT not the actual feed! What a complete pleb! Definatly need to go back to being blonde ;)
x Lots of love x
I get up at the latest half 9, cough because laying down all night means all the crap sits on my chest and then go downstairs. I have my tablets and morning nebuliser and then have breakfast. I then have another nebuliser (Dnase) which i have an hour before physio as it thins out the mucus so i can cough it out easier. While Im waiting for that hour I get dressed and ready (which if im not well or tired is a big effort in itself). Then comes the physio and lasts as long as it takes to bring up however much shit is on my chest. This kills me and tires me out so i have a rest for a while and then its lunchtime!!
I normally have 2 cooked meals a day so by the time i have cooked and eaten my lunch an hour has gone. Then i have a couple of hours in the afternoon to actually get 'normal' jobs done such as ironing, cleaning, shopping....and then everyone finishes work!! I have to have dinner by at least 7 otherwise i still feel really full up when i start my overnight feed. Normally start my feed by 11pm and this can finish by about 3 or 4 in the morning depending on how fast i have it running through. I never have a full, uninterrupted nights sleep.
So THAT's what I do all day....but i admit that when i do have a bad day or feel ill, i will take ages to do things and may spend longer sitting in a chair or in bed than i should because i physically have no energy to get up and that is not laziness!! That was not a rant though, its just people have asked me that question alot lately and make it sound like i do nothing when it takes alot to look after myself.
I got my new feed delivered on Tuesday and there is frigging loads of it!! I have a pretty new pink 4 drawer plastic storage system to put it in but it still doesnt all fit! Because the homecare people want to make things as difficult as possible, I get 200ml bottles of feed but need 1000ml overnight so I have been given 1000ml empty bottles and have to pour in 5 of the little bottles and then connect the tubes and hang it up. Why it cant come in 1 litre bottles already, i dont know! I had the first lot that same night, did it a bit slower than normal so i get used to it and it all went fine :) so i now get 2000 calories overnight...greedy bitch ;)
Yesterday I stopped in at my old work at the nursery and its all been decorated and moved round and looks lovely. I spent ages in there catching up with everyone and sooooo want to go back - i miss them all! We are hopefully all going to go out again soon which I really hope happens.
Scotts mummy and daddy have gone on holiday for a week to Eygpt so he has the house to hisself. I am attempting my feed at his for the first time as i was abit scared before because of the doggies but we have worked out a solution!! I packed up all my stuff last night (i had so much stuff it looked like i was moving) and went to his...i had everything...pump, tubes, syringes, pjs BUT not the actual feed! What a complete pleb! Definatly need to go back to being blonde ;)
x Lots of love x
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