4 Months Lucky

Oh dear, how can things go wrong so quickly?!

Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:

On Saturday night we went out for a meal with some friends we have made at Surrogacy UK which was really nice, we haven't seen anyone for awhile due to a lack of socials so it was nice to have a catch up. Then on Sunday Pete was as the cricket all day and I just had a relaxing day as I'd had a busy week and just wanted to get some rest!

On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.

By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!

So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!

I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!

PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box

Parking and Walking

Well our boiler is fixed and we have heating in our bedroom, wahoo!

I haven't been up to much really, I'm trying to go to yoga twice a week as I can't seem to be able to force myself to go swimming when it's cold! The usual has happened at the gym, it gets cold and snows and everyone parks in the disabled bays! So when I went last Monday the only spaces left were ones right at the back of the carpark, so I parked right in front of the entrance, halfway on the pavement. They clearly have no intention of doing anything about people parking in the spaces, so I shall park there from now on if necessary.

I started my voluntary work again on Friday and have a new mentee, she seems nice and I'm meeting her again in two weeks. We were chatting for about two hours!

On Friday Pete and I met my brother and his girlfriend for a few drinks at the pub, I got to drive Pete's car for the first time since he got it as I was the designated driver for the evening. Pete thinks his car is better than mine because it's a BMW, well now it's snowing we will see who has the better car since his is a rear wheel drive and was sliding around on our road yesterday, he is working form home today which means I have to put up with him haha.

We went for a meal yesterday for late lunch/early tea. It started to snow again whilst we were driving around and we did consider going back home, however we were too hungry! We had to park near the restaurant as obviously I cannot walk far at all in this type of weather, we literally parked less than five minutes away and on the way back I was coughing really hard. So we parked on double yellow as with a disabled badge you can park on double yellow as long as your car isn't causing an obstruction which is wasn't as far as we could tell. When we got back, we had a parking fine!! A ticket officer was walking past so Pete queried the ticket, the man said there was yellow lines on the pavement which means nobody can park there, I know this and if we had seen them we wouldn't have parked there but they were completely covered in snow! The ticket man said if we took photos and sent an email we would get the ticket removed (he hadn't issued it so couldn't remove it), so fingers crossed it gets cancelled!

Sometimes I wonder why everyone seems to make parking so difficult for people with disabilities, do people think disabled people disappear in winter so their spaces are available for others to use, or that we can see things through the snow? Perhaps I shouldn't be trying to have a normal life and stay inside all winter. All I want to do is go to yoga or go for meal without having to walk far and end up coughing my guts up!

I imagine a few people wonder why I can't walk far from my car but then I can take Alfie for a walk. So let me explain........ When I take Alfie for a walk I wrap up really warm, I even put tights under my jeans and wear thermal socks etc. I do cough at first because of the temperature change, but I'm expecting it, I am prepared and I accept it as I'm going for a walk and I know in the long run it's good for me to get the exercise. Afterwards I come home, get a warm drink and sit down and recover.
When I'm out and about doing the things I do, I'm not wrapped up as well, I'm constantly going into different temperatures so my chest can't adjust. I can't recover and it's not nice to be constantly having a coughing fit and people looking at me and commenting on my cough.
Think of it like this - people go to the gym and jog for half an hour on the treadmill, but they wouldn't want to jog everywhere would they? Well walking Alfie is my jogging, but I don't want to be 'jogging' all the time do I?!

Bones

Yesterday morning I had a bone scan, I have to have one every 2 years (I think). Years ago this scan showed my bones were slightly brittle and I was put on extra calcium tablets and another tablet that elderly people tend to have. The scan after that showed they were working and my bones were better, so I am hoping this scan will show the same. It is routine for people with CF to have these scans so nothing to stress about. It's really easy, you lay on a bed and this machine goes over the top of you, you have to put your legs in a few different positions and it takes about 10-15 minutes. My appointment was at 10am however I got there early as it was at the LGI, not St James and I always find the LGI difficult to find and get parked, so I set off early. Anyway I got there for 9.30am, was receiving the scan by 9.45am and was out by 10am.

I'm still getting used to my new car which is a new Astra, it's alot bigger than my mini and it doesn't have a handbrake. It has this stupid button instead and it's annoying me, you can't turn it off unless you have the foot on the brake and it has this hill start assistance which is majorly annoying me. After you take the foot off the brake it doesn't roll back for 2 seconds, but it won't let you accelerate either! Are people that rubbish at driving that Vauxhall have had to create something that means people don't roll back? What about people who can drive properly and would like to set off quickly?! The annoying thing is, when I test drove the car, this one had a normal handbrake so I had no choice but to believe the guy when he said I would get a button but apart from that it would be the same. When he calls me to see how it's going, I will not hesitate to tell him what I think! I'm sure I will get used to it, but at the moment it is majorly annoying me! Apart from that I seem to be getting on fine with the car, it looks very nice inside although I feel very small in it!

I forgot to mention last week but Pete has got a promotion! Wahoo! From the 1st October he will be a Senior Planner, very proud of him as he has worked so hard and it's finally paid off!

I went food shopping by myself on Wednesday for the first time in ages. I figured now that we live in a bungalow so there are no steps to carry the shopping (apart from the two to get in, the flat had loads of stairs) and we have a car that all the shopping can actually fit in the boot and not have to go on the back seat, I might be able to manage by myself. So I got there and all the disabled spaces were taken, I had to drive around twice before someone left and I could get in. Half of the cars didn't have disabled badges in them and the car next to me had a guy in it asleep with no disabled badge, I mean the cheek! Then I got into Asda and they are in the middle of expanding the store, so nothing was in it's usual place, the middle bit was shut and you had to walk around it and it was packed because I assume it was closed Monday and Tuesday and so everyone had come on Wednesday. In addition to this they didn't have loads of the stuff we usually get and I found it difficult to push the trolley (Pete usually does it!). I was tired when I got home and Pete brought all the shopping in, then I didn't eat my tea because I was too annoyed and tired. Needless to say I decided that I shall not be going shopping on my own again! Thanks Asda for making me hate shopping even more! Grr!

Murder by Yoga

I'm quite fed up at the moment, I don't seem to have much to do!
I love the snow but it means I can't take Alfie out, even if I do its a 15 minute job just around town so not very scenic or peaceful. I might actually try go somewhere today because it's abit warmer, about 1-2 degrees now whereas the past week or so its been freezing or below. No matter how many layers I put on I still seem to feel cold! Alfie also gets cold even with his coat on, he needs some boots or something!! So we have mainly been hibernating and watching my Tudors dvds that I got for Christmas.

The purchase of the property is moving on now, the mortgage guy has told us we have the mortgage subject to the valuation etc so that's good. Apparently they need to manually check it because of my benefits but he doesn't think this will cause a problem, lets hope so!! I have been eying things up in shops I want like curtains and rugs, just need to save some money up! Which leads onto he fact I am trying not to spend any money so I can save up, hence why I am also bored!

I had to fill in a tax returns form because I work at my mums barber shop each week (I am classed as self employed). I could swear the advert says tax doesn't have to taxing. Well since I couldn't log into the damn thing, that made it more difficult! I phoned them up and ended up getting very annoyed with the 'helpline' man as he was not very helpful atall and keep asking me why stuff wouldn't be working, why would I know?! That's why I am ringing him! After having a go at him he actually started to be abit more helpful and we established I had locked my self out, but rather than telling me this it was telling me I didn't exist! Stupid thing.

I eventually got in and filled it in, I also have to put in my incapacity benefit as it can be taxed (but the first 28 weeks don't get taxed), I don't think from reading the booklet that disability living allowance is taxable. Anyway, if I have filled it in right which I highly doubt I have done, then they owe me some money. Bonus!

I swear the woman at Yoga is trying to kill me. I've started going on a Monday instead and I think the other people may be more advanced because it seems to be more fast paced and it makes me get so out of breath! She gets us to breathe in and out really slowly over a few seconds whilst doing the yoga positions, seriously she is trying to kill me! I also ache the day after, I do not think I am very flexible! It's all good for me but hard work. She taught us last week a way to breathe to try get air into all parts of our lungs, she said it helps increase lung capacity. Bing! My ears pricked up! Basically the three parts of your lungs each need to be focused on, so you breath into your lower lungs first for 1 second, then your middle for 1 second then upper for 1 second. She taught us how to feel our chest so we know we are getting the right parts. Then when you breathe out you do the same, breathe out of lower first for one second, then middle then upper. Then you increase the seconds if you can. In the class she had us going up to 3 seconds per section of the lung, I sometimes managed 2 seconds per section of the lung (so 6 seconds breathing in) if I was lucky!
I decided to try this when doing my acapella, it doesn't work when doing it breathing out however it does work when breathing in, it seems to make sure it gets air to all of your lungs before you blow out. I seem to be shifting more mucus anyway!

I am actually very mad at the gym I go to. When I went on Monday to the yoga all the disabled spaces were taken. There are maybe 30 or more disabled spaces so you would think I would get one! But no they were all full so I had to park by the entrance (the drop off point) as I refused to park at the back of the carpark. I complained to the lady at reception and queried if anyone checked as most of the cars I saw had no disabled sticker. She said 'well it's because of the snow and ice, people want to park closer', can you believe that?! She was actually saying it was OK to do! I told her that I was actually disabled and couldn't find a space and when it snows, people who are disabled need the spaces even more and don't just disappear for others convenience! She said she would have a word with the manager but I doubt she did so I'm going to make a proper complaint as I don't think it's acceptable. They should be clearing the carpark so this doesn't happen and also put signs up reminding people that snow doesn't make them disabled! Or/And get someone to give out the fines they 'claim' to give out if you park in a disabled space without a sticker.

The Young Victoria

We went to see the Young Victoria on Tuesday night and it was brilliant! We were the youngest people in there by about 30 years as Pete pointed out to me. We heard some old guy talking about us because Pete got his phone out to turn it off so this guy said quite loudly 'these youngsters always got to get their mobiles out', how rude!!! He is lucky I didn't say out loud 'oh is it pensioners day out today?', but I am not rude (just in my head). I don't know what it is about some old people they think they have a right to be rude, you wouldn't believe all the filthy looks I get from elderly people when I park in a disabled spot even though I have a valid sticker. I have news for you, just been elderly in itself isn't a disability! It's a privilege to people like me!

Anyway rant over, back to the film. I loved it, I knew I would. I was about Victoria's struggle to become Queen when her Uncle the King dies because she is so young, and then she marries Prince Albert and he tries to take over abit too but in the end they work out a happy medium. In the film they make Albert get shot which didn't actually happen (someone did try to shoot them though), but you have to dramatise it sometimes! I love all the outfits and the way they talk and act all prim and proper! I love the dancing (although I prefer the older dancing and outfits from earlier times). You all know by now I'm abit of a geek when it comes to history especially regarding monarchs etc. I spent about 2 hours yesterday (seriously) researching about Victoria and her children etc so I'm slightly clued up now. God I'm such a geek! Pete is going to take me to London to see Henry VIII's armour at the Tower and also a love letter he wrote to Ann Boleyn at the British Library, can't wait! Pete knows me so well!!

Partners in Crime

On Monday I took Alfie and Murphy for a walk around my favourite lake. It was about half 4 so there was no one there really except a guy on his own with no dog, stalking me! I got really freaked out because I stopped twice to look at the lake whilst the dogs were sniffing etc and both times the guy stopped too and acted like he was looking at the lake too. Maybe he was, and I'm just a paranoid freak! He did have a quite large backpack on which freaked me out even more as I had an image of him having all these torture tools in there! Anyway I kept looking around at him, he was a few metres behind me and I was deciding what to do if he came after me. I don't even know if I can run, I have not ran since I was at school and even then I was the slowest runner ever, and this was when I had a decent enough lung function! Anyway eventually he turned around and went back towards the car park, phew! However I was kind of scared for the rest of the walk after this happened!

Because no dogs were around Alfie was allowed off his lead the whole time which was good as two dogs on leads can end up with you been tied up by them! A guy jogged past and Alfie for some reason decided to run along with him for about 5 minutes, completely out of my sight so I started panicking, but he then ran back only to see a couple with a dog and tried to start a fight with the dog. He was bouncing around this dog, growling and this dog just stood there it was so funny. Alfie didn't bite the dog or anything, he then got bored and strutted away with his tail held high. He is hilarious sometimes! Murphy did try to join in with the jumping around the dog, but he was on his lead so I just pulled him away.


I started my IV's today, oh joy! I went to my usual secret parking space and there was a van parked infront of it. So I waited 10 minutes and the guy came out and he was talking to the traffic/security guy who seemed unaware he was totally blocking in a disabled bay. The van moved and I went to go into the space and this security guy stood in the space so I moved my arm as if the say 'get out of the way!' which he did eventually and then I hadn't even turned my engine off and he wanted me to open my door. So I put my window down and he asked me if I had a disabled sticker, I was pretty annoyed by this point because he seemed perfectly happy to let the van block the space, then he had stood in my way and then he hadn't even given me chance to get my sticker out! So I said 'give me chance to get it out please', and he said 'oh we don't give you much time' and laughed. Well I was not amused, he gave the van man plenty of time to do his delivery! So I shoved both my disabled stickers in his face (I have 2 as I have just received my new one but my old one is still in date) and said quite rudely 'this enough for you?!', he said it was fine and left me alone, good job as well! I don't mind them checking, they should do it more often really, but don't treat me one way and then someone else another way!

My Fev1 is still 39%, my weight is 57.4kg. I'm going on antibiotics colomycin and Meropenem. They couldn't do my hearing test today as the equipment is locked in a room and the woman whose room it is, was not in today... So they are going to do it when I finish my IV's. I have a green butterfly needle in my port this time to see if it's the normal gripper needles that I am allergic to. The needle sticks out abit so the green plastic isn't resting on my skin which is good as it shouldn't rub me but bad because it's easier to knock if it's not close the the arm, its only sticking out abit though. I'll be careful with it as I have no padding either as I have no gauze to see if that's I might be allergic to. I decided to go for dermafilm dressing as the nurse said this is what most people use if they are allergic to tagaderm. We will see how it goes!

I'm doggie sitting Murphy again today. They constantly fight over things such as the pigs ear (yes I know its gross but they like to chew it!) and try to get one over on each other, they are so competitive... and so funny to watch!! Here they are, partners in crime!

My body is weird!

I started my IV's today, my friend came with me which was nice of her, she offered to come, I didn't ask or anything. My other best friend was going to come too but this morning she text me saying she had too much to do so couldn't come, she is going travelling around Australia for 6 weeks tomorrow and she is not very organised so I kind of expected this to happen!

Got to the hospital (after going in the wrong lane on way there and having abit of a panic) and went to my secret disabled space and there was a delivery van parked there! I kindly asked the man if he was planning on staying there and he said he would be 5 minutes, I then asked if he had a disabled sticker? No he didn't and said he would move as soon as possible. I told him could he move now as he couldn't park there and I was late for my appointment. He finally decided to move, idiot!

So did the usual stuff to start IV's, and can you believe it. My lung function is back up at 52%?! Crazy stuff. I'm still going on the IV's as obviously they are all ordered and delivered, plus I still have sore lungs and need booster as haven't had any for a few months now. The only reason I can think that this has happened is because I started my tobi nebs last week? Who knows?! my weight has gone down to 55.6kg so the dietitian wasn't too pleased, I told her my appetite is abit funny and I am only eating stuff worth eating i.e. really nice stuff like curries etc. I didn't have any tea last night as there was nothing worth having and I've started sacking breakfast off. She says to have skandishakes when I don't feel like eating (these are high calorie milk shakes, about 600 calories per milkshake I think, they are delicious!), just so I don't lose anymore weight and it becomes a problem.

Because I have never had meropenem before I had to have my first 2 doses of it at hospital which meant I had to go back 6 hours later which I wasn't too pleased about, no-one told me I would have to do that! When I weighed myself when I went back for my second dose, my weight was 56.2kg, probably something to do with the fact my friend and I went to TGI Fridays for lunch and I ate loads, doctors orders! So I'm not really that concerned about my weight, they do like to make a fuss about nothing sometimes.

I slept most of the afternoon, that first dose of IV's always hits me hard. Not sure if I'm going to like this meropenem, the nurse made it look really easy making it up but when I had a go it took me forever! I'm having meropenem 3 times a day and tobramycin once a day which takes an hour to go through the eclipse, if you don't know what an eclipse is, look at my older posts from when I had my IV's last year and I explain what one is there and I think there are even pictures! Its basically ready made for me to use and is like a balloon that goes down and so pushes the drug into me. I might post some more pictures this time around but can't be bothered to do it today, too tired! xx

Theres snow! It must be Christmas!

Oh yes it's snowing! Check this out, I feel so christmassy now!!

I love Christmas, I know there are alot of Christmas haters out there. Why?! You get to eat loads of nice food, buy and receive gifts for everyone you love, there are sparkly decorations everywhere and you get to go to parties etc with your friends and family. Yes people hype Christmas up, those are the shops etc. wanting to make money. Yes it's only one day, but it's not really, Christmas is more about the build up, when I hear a Christmas song I get sooo excited, I'm excited about putting my tree up on Sunday. It's all so pretty and I really do think it is the season of goodwill. If we didn't have Christmas, how miserable would winter be?!

I'll be giving out my Christmas cards soon, I got them from the cf trust this year so at least the money has helped charity and also raises some awareness. I like to get Christmas cards that are actually related to Christmas, so one's with Jesus on and the 3 wise men. I've just ruined the surprise for everyone who I'm giving a Christmas card to now, lol! Some people don't do Christmas cards, I like them. It's a good way to wish people a merry Christmas who you don't see anymore or cant' see and obviously Christmas cards in the home make it look more Christmassy! I'll shut up now before you all want to kill me.....

I went shopping today with my mummy and I forgot my disabled sticker (doh!) and thought we were going to have to park miles away but my mum got a space really close to Debenhams (isn't she good?!) My mum now reads my blog so I have to say nice things about her, my dad has also found it and my brother, so basically I have no secrets anymore....! The shopping was very tiring, I don't particularly enjoy shopping, I just get warm, tired, my lips go all dry and I sometimes feel abit light headed. Now that I'm back home I feel like I'm going to fall to bits! I got Pete a few things, I obviously cannot say what I got as he reads this! My mum got me some boots, but I can't have them until Christmas day (of course). There are sales everywhere! It's well good!

Here are some pictures from the body shop party I went to on Saturday

My cousin who is my maid of honour for my wedding

My Auntie (my daddy's sister)

My mummy on the left and her friend on the right

Best 4 years of my life!!

Well on Friday Pete and I had been together 4 years and what a great 4 years it has been (I love you lots Pete and can't wait to marry you xx). Pete had the day off work so we went to York, I love York because it's all historic and I just love it! There are little sweet shops and cobbled streets and castles!!

It took us ages to find somewhere to park as I wanted to be close to the town centre for obvious reasons, yet I didn't want to pay loads for parking as i'm tight with my money. We ended up going into the shopping centres car park where I spoke to a very rude carpark man. He was in a little office and I got out of the car, the conversation went like this:

Me: 'hello, could I park in one of these spaces?' (pointing to some coned off spaces which I thought were disabled spaces)

'no'

'oh right...erm why?'

'because they are not disabled spaces, they are shopmobility spaces' (he said this in a very sarcastic tone, almost laughing at me)

'oh, where are the disabled spaces then?'

'there' (points to about 8 spaces that are all taken)

'oh well they are all taken'

'-' (no response)

'well thanks for all your help' (me in a sarcastic tone)

So we parked in a normal space and put my sticker out (as parking was free for 5 hours with a sticker). The only reason I wanted to park in a disabled space was because i've heard of people been given a ticket for parking in the 'wrong' space with their disabled sticker! Whats shopmobility anyway?

Anyway, after receiving a lovely 'warm' welcome by the guy, I still managed to have a really great day, we went for lunch in a restaurant over looking the river, then went to the York dungeons where I got picked on by the actors. The supposed plague doctor asked me if i had a cough, I told him I had the plague so to keep away. He said 'ok no need to be smart funny hair girl' (!!!). He then make me sit behind a curtain and pretended to knock the plague out of me with a hammer. I then had to stand in the docks and be accused of witchcraft. At one point we were sat in the dark and someone was going around poking us, it was well scary!

We then walked to see York Minster and then had a coffee in Starbucks (I love their white chocolate Mocha) then headed home. It was a great day, heres some pictures

Saturday was X factor night, and all I have to say on that matter is it's some kind of fix to keep Danni's group in! I can't believe Daniel and Rachel are still in and Laura isn't, something is not quite right there...

Today is remembrance Sunday and I just managed to watch the last parts of the service (didn't wake up till 10.30am and then stayed in bed for ages). I don't know much about the wars etc. But I am very grateful for all those who have fought in them and i'm glad this day is dedicated to them. I don't think people like myself would be around if it wasn't for their bravery and for that I am will be grateful forever. I love the service, seeing the Queen, the clergy, choir etc and the music and marching, its all traditional and it's stuff like that, that makes England great!

I'm feeling really happy at the moment and positive, i'm so ungrateful sometimes for the life I have. My life is great, my family are great, my friends are great, and i'm just feeling great! yeay!

not the patient for once!

Well i've been trying to stay quite busy, because if I don't I think about stuff and I get upset. These are the things that upset me, the fact I don't have a career, the fact my parents are separating, the fact I may not be able to have children without jeopardising my health and also Toria's death has made an impact on me. So anyway I think those things are enough to make anyone sink into some depressive state so i'm trying to stay busy and so I don't feel useless and so my life seems worthwhile. I'm so glad I have Pete, he is like my rock and i'm so lucky to have found someone like him. My family are great, and even though my parents are separating, they still get on fine and so i'm not torn between them or anything. They are really strong and are trying to make it as smooth as possible, I know they are upset but they try not to show it, like myself.

On Friday my mum had to go in hospital for an operation on her knee. She got to go private through insurance or something. Private hospitals are abit weird, they don't really feel like a proper hospital. I was hungry so they made me a sandwich but I wasn't allowed to eat it infront of my mum because she was nil by mouth, so they made me eat it in reception! Whats that all about! The nurse asked me if I had the day off school or college, I was like 'erm i'm 23', she was very apologetic saying i'm very pretty, I never knew you had to be young to be pretty?!!

The rooms were not really any better than the rooms on the cf ward, although the rooms on the cf ward are better than your average nhs room. My mum was in theatre for about 2 hours, I tried to have a nap on the other bed (there were 2 beds in the room and there were signs everywhere saying 'do not sit on the patients bed to reduce cross infection'), but I felt stupid going to sleep when I wasn't the patient, which is abit weird since I am always the patient!! I stayed with my mum for about an hour afterwards, its quite funny because about 3 hours after I had my port fitted this year under a general anesthetic , I was bundled into a taxi and sent back to the ward. Looking at my mum, I dunno how I did it. Thats cf for you, the staff just expect you to be hardcore and put up with anything. There was no getting a wheelchair into an ambulance to transfer me, I had to get dressed even though both my arms were really hurting as I had a port removed out of one and a port put in the other, then I had to walk to the taxi, yes walk! Then the taxi was flying around corners, then I had to sign a receipt and walk upto the ward, carrying my notes (which are not very light I can tell you)! I dunno, thats the nhs for you....

Anyway after spending all Friday at the hospital I was so tired, how can it be so tiring just sat in a room all afternoon?! I was also starving as all I got all day was that sandwich, they didn't have any tuck machines or anything, whats the world coming to?! But I still had to have my tea, then go do the wages for my mums barber shop (as she couldn't do them), then do my physio. It was about half 9 by the time I was sorted and I was so tired I could have just slept on the floor.

So yesterday Pete and I took Alfie and Murphy for a walk, it was very nice but started to rain towards the end, luckily I had my hat on. I am very sensible when it comes to keeping warm! We then had some lunch (I had left over takeaway from Saturday night), I then had about an hours kip, then we went to our local shopping centre for a few things.

On a Sunday the shopping centre shuts at 5, and we were parked in Debenhams car park and they wouldn't let anyone through to get to the car park, they had all these shop assistants guarding the entrance! This meant we had to leave the main exit and walk all the way around! I didn't have my coat on, as shopping centres are always warm. So Pete had to go get the car and bring it around for me, I would have been coughing and out of breath if I had walked that far. Whats the point in having disabled spaces if you won't let people get to them?! I could have told them, but I bet they wouldn't have believed me and I can't be bothered justifying myself to people. I know the staff want to get home, and it worked out ok because Pete went and got the car, but if I had been by myself it wouldn't have been ok. I like doing stuff with Pete because not only do I enjoy spending my time with him, but it makes things so much easier and I can do more. Like for example he can drive so I don't get tired from that, or carry the bags etc. I don't get as embarrassed when I cough etc. if i'm with him, if i'm by myself I get abit self conscious.

Mamma Mia! Here we go again!

On Wednesday I went to see Mamma Mia, it was surprisingly good! I also watched Step up 2 - the streets through the day which was pretty good too. I loved Save the last dance and it was abit like that, really cool dancing! The cinema was so full that I had to park on the pavement in between spaces, there was literally nowhere to park! I put my disabled sticker out and hoped for the best, other people had done it so I guessed it was ok. The showing we wanted to see had sold out! So we had to see a later one, the ticket guy said people just keep coming back to see it as it came out on the 11th so you would have thought the hype would have died down by now! It was orange Wednesdays though so its always abit busy, but i've never seen it that full! I had my usual sweet popcorn and drink combo and had almost finished it by the time the film started :o)

Yesterday I wanted to get my hair done but T was too busy to do it so I went shopping instead as all the summer stuff is in the sales! I got a dress and 2 pairs of trousers from miss Selfridge a right bargin! I also got some new swim wear and a present for Petes Grandma as its her 90th birthday next week and she is having a party.

My cough is getting abit more productive, i've had to do some physio in the morning. Good news is that I am getting my i-neb back today!! Wahoo! Here is a picture of me doing my physio, the thing on my face is my pep mask and I have an orange towel on me (it is not part of my outfit) for when I get hit (opps I mean patted...)



One of my nails is looking very strange, its kind of rounded, a kind of bump in the middle. The doctor told me last time I was at the hospital that I dont have clubbing on my fingers which is apparently weird for somebody with cf (thanks I think...). Anyway I think this nail may be slightly clubbed, not that it matters..! Just a passing observation...!

Last night my legs were really aching, they kind of felt like they needed to be stretched but nothing would help! I didn't sleep very well, its too warm but not even that sunny! whats going on?!

models with disabilities

Well we didn't end up going for a drink last night as my friend has a cold and didn't feel too good, so we decided to cancel since i'd seen my other friend already that day.

So instead I watched that programme about ladies with disabilities trying to become models. It's quite good but i've decided I don't really like the girl that uses a wheelchair, shes very bitchy, she was bitching about another girl who is deaf when she was in the car with her! She seems to think her disability is worse than everyone elses, she compared hiring a model that was deaf with hiring a model that spoke french! Erm no I don't think so! I don't know what it's like being deaf but it must be horrible, you have to lip read which must be exhausting if theres a group of people, people cannot understand you until they get to know you, you can't go to the cinema (unless you go to a subtitled showing and there are only a few ), you can't listen to music and many more things! This woman in the wheelchair says you can't even see most of the girls disabilities in the photos and it should be someone with a seen disability, well if you take her out of the wheelchair and plonk her in a chair you can't see hers either! I think she is very narrow minded, yes its horrible having to use a wheelchair but their disabilities are just as bad so she shouldn't be going around on her high horse bitching about them all.

I get this all the time when I park in disabled spaces, funny looks because i'm not old or don't have one leg longer than the other therefore I cannot be disabled. There are loads of disabilities that cannot be seen and i'm not going to go around looking in pain or tired all the time so I 'look' disabled, I just get on with it (well ok, sometimes I have a good moan). People are so judgemental about things they don't have a clue about, and then others think it's their right to just park in disabled space because no other spaces are available or their car is so big they cannot get it into a normal space.

Anyway....back to the programme, it's very entertaining!! I think it's good to raise awareness and show disabled people are normal and for example can be bitches too!! I don't know if they will be able to make it as models, some of them are gorgeous but the model industry is horrible to everyone anyway and I imagine will not make reasonable adjustments for them so just not hire them, I know this is against the DDA but they could just claim they 'weren't right for the shoot'. Isn't modelling about perfection anyway? Aren't they supposed to be these people we envy because they are perfect and thats how they sell the products? So perhaps a person with an unseen disability would be better, they can still portray this to the camera but have a disability to be a role model.





I could not get to sleep last night, my chest felt tight and I was coughing loads, but a dry cough not a productive one which makes me think its the tobi that I started yesterday thats causing it. Same this morning and most of today especially when outside (its the cold that does it)

Organised getting incapacity benefit today, my mum had to call as she is registered as my carer. I'm not happy i'm having to claim these benefits but if it means I have time to try get better than thats a good thing. I hope I qualify!

Went shopping to Asda, i was pi**ing it down, no disabled spaces left so had to park further away. Coughing my guts up because I ran inside and got drenched when loading the shopping into my car since a bag broke and jars went everywhere including on my toe. I actually took some bags with me today to try be environmentally friendly, so trust the only carrier bag I had to use to rip on me! Unloading the shopping was horrible, walking up and down the stairs makes me so breathless and warm! Then unpacking it, there was loads of rotten veg in the fridge so I had to empty it and then empty the bin (have to walk up the stairs again), I felt like it was never ending!! Finally I finished and had a chocolate donut to make up for it :o)

Our house insurance is due for renewal so I've spent ages looking for quotes, goodness its so confusing! I've been using those comparison sites but how am I supposed to know what locks my doors have? just normal ones! I looked them up anyway and think I have an idea now! Some guy just called me but I was having my tea so he is calling back later, I prefer to look at things on the Internet though so I can take it at my own pace, they always rush you on the phone and catch you out!

Pete is at the rugby tonight so i'm going to watch a film called dirty pretty things that i've borrowed off my mum, I bought some popcorn to have with it. How exciting!!

Finished IV's!! yeay!!

Well today I finished my iv's!

I found the hospital fine (our ward has recently moved to St James hospital rather than Seacroft) as this was my first time driving there by myself, and I also got parked right outside the entrance in one of the disabled spots, bonus! (I have a disabled badge before you start judging me!)
My lung function is up abit fev1 is 42% which is apparently normal for me, can't remember what my fvc was. To get your lung function you blow into a machine for as long as you can, it always makes me get headache and warm because it's hard work! I saw a new registrar doctor so she didn't really know much or say anything of use, I asked her about my results for my gluclose tolerance test I had last time, and she didnt understand the results and had to get a nurse to explain to her! Anyway they were normal which is good, means I don't have diabetes! The poor nurse was run off her her feet as she was the only one in today. My port bled back beautifully for my blood tests, thats good news!! Im not sure what they take the blood for, to test my immune system and things I think! The physio also takes a sputum sample everytime I go, so they can see what bugs I have growing in my lungs. Nice!
They want to see me in 4 weeks to see how i'm doing, I told them i still wasn't back to my normal self but this might be because of a) the iv's - the antibiotics make me tired anyway so once I stop them i might feel better b) i've been sat around for 3 weeks so need to build my stamina up again.
They didnt have my letter ready as promised confirming I have cf, to send off with my disabled student allowance application (for when I go to university in september). So they are going to send me it in the post.....lets hope! I also saw the social worker about benefits since I am from now on only going to work part-time due to my health, she gave me some information but it looks very confusing, so going to ring the job centre to get advice.
Now my needle is out I can have a good look at my new port, it looks good, doesn't stick out too much, still abit bruised. Heres a picture, you can see the port abit as there is abit of a lump and a red dot where the needle was



So anyway to Petes birthday! I got him a camcorder! He seems to like it but its abit hard to be enthusiastic at 7 in the morning when your in a rush to go to work! I made him a cake yesterday from scratch, it was hard work! heres a picture, the knives were to stop the top sliding off until the icing dried, I hope it tastes good!!



Yesterday I also cleaned the bathroom and made some pancakes for my lunch with the left over eggs from making the cake. So was quite a productive day overall! Petes mum, dad, two sisters and nephew are coming over tonight to go out for a meal, should be good. Think I might take Alfie for a walk this afternoon, he looks abit fed up bless him!