Hospital memories

I am still not sleeping very well and still having very vivid, active dreams nearly every night that I can clearly remember. These dreams are weird as I am always in them and usually I am watching my dreams, the dreams are never very nice but I wouldn't call them nightmares as they don't scare me. When I wake up on a morning my eyes are puffy but not as bad as before, and even after 12 hours sleeping I still feel tired, drained, gunked up and generally feel like crap! I dunno maybe I am sleeping too much, although I've been setting my alarm to get up by 8.30-9am and it hasn't helped. The only explanation I can think of is the voriconazole is messing with my head, I've looked at the side effects and don't think I can see anything about sleeping problems. It's so strange because I am usually quite a good sleeper (apart from getting up to go to the toilet like 5 times during the night). My dreams are clearly been influenced by what I do during the day as last night I dreamt about being Henry the 8th's wife and guess what? I had watched the Tudors on Sunday and abit on Monday. Jo by the way, found me the 1st episode of the new series which isn't even supposed to be out yet! So I officially love Jo!!!! In the dream Johnathan Rhys Myers was not Henry the 8th which is abit disappointing, that would have been a nice dream....! No my dreams have to be historically correct and Henry was ginger and fat!

So I couldn't get to sleep last night and was thinking about random stuff like you do, and I was thinking that I think my memory is quite rubbish, like things from my childhood etc. So I decided to think about all my memories from been in hospital (I clearly was not going to sleep!) as this seems to be the biggest gap in my memory which is quite strange. Actually I discovered I can remember quite alot! As you will see, cross infection rules were pretty non existent! (wcf means they had/have cf). Here I go:

-Watching Daniel (wcf) getting his port flushed to see what is was like
-Someone telling me someone had stood on their line and pulled their port needle out and I asked if it hurt (I didn't have a port at the time) and the person was like 'well yeah duh!'
-Getting my first port - drawing an x on my chest where is was going to go and they kept cancelling the operation date (I did finally get it although can't remember this)
- Been in the bath whilst someone (my mother and nurse I think) pulled the dressing off my stitches on my stomach from having my gastrostemy put in and me not enjoying it
- Playing on the mega drive with Nikki (wcf, rip) on Sonic 2 and she always kicked my arse. I had to sit in the door to my room and she in hers with the mega drive in the middle (their attempts at preventing cross infection...)
- Clare (wcf) asking Daniel out for me, he even came to my house to play Lego you know!
- The nurse telling my mum and I that Clare had died during the night and my mum crying and I laughed for some reason and got told off (I dunno why I laughed, I guess I found it weird I had seen her the day before and she seemed OK to me)
- Weird, fat, pervy boy with asthma spying on me through the curtains when I was in a bay room and when I told him I didn't like him anymore he told the nurse I was bullying him and I got told off!!
- Someone chucking calogen across the room (Shelly, wcf maybe?) and getting it all over my simba lion cub!!!
- Thinking I was so cool cos I had TWO drips and my feed drip so I had 3 in total
- A little girl who lived in hospital called Charlotte I think, she lived in the third single room from the nurses desk, she died when she was about 3 and I thought that room would be cursed and never wanted to stay in it.
- The ward had some pet fish that we were allowed to feed and you had to mark a piece of paper when they had been fed so they didn't get overfed
- That stupid treatment room with the bloody train painted on the roof and my mother getting me to count the stupid wheels every time they tried to put a line/needle in me! It did not distract me!
- My port blocking and them putting 2 needles in at the same time to try unblock it (it didn't work). I ran away and hid in the toilets when they suggested putting another needle in!
-I remember when they put your line in, you had to ensure they attached you to the drip by putting the tubing under your top, otherwise when you came to take it off that night they had to detach all the tubing from the drip to get your top free. I have no idea why they didn't just stop the drip for a minute and unscrew it somewhere to get the top free. I don't even know why they insisted attaching you to the drip all the time to have 10mls of saline pumped into you per hour! I know it was 10 mls cos I learnt to do it myself when it beeped.
- Been in a bay room and the baby next to me crying constantly and I couldn't sleep. So I rang my parents during the night off the pay phone in tears and my dad drove over and sat with me until I fell asleep. Bless!
- The earliest memory I have of hospitals is before I even went to St James and I was at Pinderfields hospital and I was playing in a sandpit, I don't know if I have even made this memory up! Sand pit, in a hospital..??!!

So as I discovered I can remember quite abit, but they are only snippets of things. It helped me get to sleep anyway!

A tiny bit emotional

On Saturday Pete and I were supposed to be going to the cinema to see the Young Victoria, instead we ended up dog sitting and watching The Departed on dvd. Why? Because both the stupid cinemas have decided they are only showing the Young Victoria on Mondays and Tuesdays and the other film we were willing to go see instead (Knowing) was on at either 7pm which was too early or 9.30pm which is too late, at both the cineworlds close to us. The 7pm was too early as I worked at my mums shop and so didn't get home till about 5pm and I needed to have a little rest, get a bath, have physio, do tea etc. Helping out at my mums shop is going to become a regular thing as I can manage a few hours, I'm allowed to do it and still get my incapacity benefit, I won't get bored just sitting at home and going out of my mind and of course my mummy is flexible and won't be like a proper boss :o)

So anyway I was annoyed about the cinema thing as I was really looking forward to it and I wanted to keep my mind busy with Louis passing away. It's not like I knew him really well or anything, but it's abit scary when someone you have spoken to suddenly dies, it reminds you how it can just happen, it's upsetting and you have no control over it and it's just heartbreaking to know a nice, young person has passed away. It could have been so different if he had got his transplant! So anyway I was miserable and fed up and I started crying for no reason and once I started I couldn't stop, I'm abit emotional at the moment, that time of the month and everything... Sometimes you just got to let it out! Pete asked me a few times what was wrong and I said I didn't know so then he just left it and stroked me because he knows I like it :o)

On Sunday we went to this warehouse place called JTF and we put the roof down on the car because it was sunny. However not sunny enough, I was freezing my arse off when we were on the motorway! We looked in the wedding bit for ideas and bought some stuff for Alfie, including a new box thing for him to sit in, in the car and a travel water bowl (70p, bargain!). We also bought a new mop incase your interested....
My cousin and friend came around in the evening to arrange the hen nights, remember I am having two! Booked travelodge for both of them, bargains!

I have been asked to do some training on cf at Scope where I volunteer, I feel quite proud I've been asked and appreciate the opportunity however.... I'm still thinking about whether I am brave enough to do it, as I'm abit of a wuss when it comes to speaking to a group of people! I don't know why, because when I was at uni I did it all the time for the law part of my degree, we had to moot, where you stand up and put your case forward for your client etc. Telling people about cf is way more scarier though! I've been thinking about what I could do and so far I have thought I could (not in this order):

-Get people to say what they think know about cf, more out of interest for me lol, but also to show it is an unseen disability and so people tend to know little about it
-Do a day in the life of me kind of thing with acapella to show etc
-Display the variations in cf (if you know one person with cf you don't know us all!) by showing different examples of people I know with cf (if you guys would let me obviously!)
-A picture of me with arrows showing all the ways cf can affect a person
-Explain the genetic side of cf
-Abit about transplant
-Go through problems/obstacles people with cf may have and how a mentor may be able to help them (afterall this is training for people who want to mentor others)

Speaking of Scope, I saw my mentee this morning and we had abit of beauty session. I did her hair, make up and nails, it was good fun! I don't really say much about my mentee or voluntary work as it is all confidential but I think I'm allowed to disclose we had a fun pampering morning. I never use my ghd's so it's nice to actually put them to some use!

Another life lost

I don't mention everybody who passes away due to cf as it would just be too depressing. However every so often there is someone who stands out to me and Louis was one of those people. He hadn't posted on the cf forum for awhile so I knew things might not be great but it has still come a shock like it always does. Louis was a great guy, there is a picture below of his tattoo he seemed very proud of. Clearly not ashamed of having cf and proud to have it out on his arm (65 roses is kind of a logo for cf).

This is what he said about his funeral when we discussed it on the forums:

'Once again I have to be different because I'm being plastinated . I'm thinking of having a party/living funeral because 24-48 hours after I die ill be in Germany. So basically Im getting major drunk and saying goodbye to everyone in advance at a party I'll also be explaining that all my stuff after I have died will be going on ebay and all money raised will be going to a charity'

I dont know if he got his party but I think i'll be having a drink in his honour. He was only 18, rest in peace sweetie xx

It's physio time!!

2 posts in one day ey? Anyone would think I don't have a life! But I have actually done quite alot today (well for me!). I have vacuumed up everywhere, dusted and cleaned the bathroom which is bloody hard work when your coughing and spluttering and out of breath! I gave it a good scrub as there was some mould and stuff so now its all lovely and clean. I was exhausted from doing it but I had agreed to go for a walk with my friend (and Alfie of course), so I did. It was very tiring and I got out of breath (I can tell my lungs are still not up to scratch!) but it was nice to have a chat. I was planning to go the gym but have sacked that off and instead I am doing this blog because I can sit on my bum whilst doing it. You know the saying 'so many things so little......energy!'. I've talked Pete into getting a takeaway for tea :o)
I called the hospital at lunchtime and they finally called me back and said I could start my tobi nebs, good job because I had already done my first dose!

I have been doing some videos of me doing my physio to educate you all and show you what I do(although I'm sure all the people with cf are familiar with these things!). Please excuse the lack of makeup and my messy hair, its before I got dressed for the day!

This is one of me patting and doing my pep mask, I tend to do this to get the lowers of my chest as I don't think the acapella gets the lower parts that good and it's were I tend to get chest pains. Alfie was clearly annoyed it was not a video of him for a change so got in on it anyway to steal the limelight!

This is me doing my acapella

This is me doing my nebuliser, the noise is me breathing out

Awaiting permission

I had my hearing test on Monday, you sit in a room facing the wall with some ear phones on. Then you hear beeping noises of different frequencies and have you have to press a button when you hear them. They become fainter, lower in frequency etc. to see how far you can go I guess and the nurses plots it all on a graph type thing. This is all abit difficult to do when people keep slamming doors outside and walking past!

I will admit at some points I could not tell if there was a noise or if I was just imagining it, but she said to press the button if I heard the faintest noise so I did! She showed me the results and said they were normal so I should be OK to start my tobi nebs again but she would confirm with the doctor and call me tomorrow (Tuesday) as the doctor had gone home by this point.

So Tuesday arrives and it gets to lunchtime and no one has called me, so I call them. I am quite eager to start my tobi nebs to try shift this cough I have before it gets any worse, I was nearly sick yesterday morning from coughing so much which is not normal for me. They said they couldn't find the nurse and would get her to call me back, I also booked my next outpatient appointment whilst on the phone. The doctor had said he wanted to see me in 4 weeks which according to the nurse is the week starting the 27th April, I told her that was 6 weeks. Anyway my appointment is in like 3 weeks now as 4 weeks worked out on the bank holiday Monday. I don't want to leave it too long since my lung function still isn't great and the doctor made it clear he wanted to see me sooner rather than later because of all the treatment I have been on recently, for a start I need liver blood tests because I am on voriconazole.

So anyway, it got to about 3pm and the nurse had still not called me back. So I called again only to be told she was out on home visits! Argh!!! I asked the lady to ask the doctor about my hearing test, apparently the doctor has not been given the results and will get them off the nurse tomorrow and call me tomorrow (which is now today). It's now 11.15am and still no call, I bet I end up having to call them. It is so annoying!! I might do my tobi anyway. I know they are busy and it probably just slips their mind, but it's so frustrating that I have to keep calling, I feel like I'm annoying them and you get someone different answering the phone every time which doesn't help!

Evidence!

Alfie goes crazy after having a bath (he wanted to be nice and clean for our guests on Saturday night), see the evidence video below

On Saturday I went out and got very, very bungalowed, I don't know what happened as I did not plan for this to happen! See evidence picture's no.1 and no.2

On Sunday it was my brothers birthday so we all went out for a meal, I felt rough and tired (and my chest felt sooo tight!) and I don't think Pete felt great either! See evidence picture no.3

I also went shopping on Sunday for my brothers birthday present (yes I know i'm not very organised) and bought myself a pretty dress as well, see evidence picture no.4

My cough has returned as it is evil and won't leave me alone but it may just be a hangover cough (I have created this term myself!). But the good news is my arm is clearing up nicely, not quick enough though! I couldn't wear the dress I wanted to on Saturday and had to wear one that would cover my port up. Nevermind though!

Secret carpark space is not so secret!

I finished my IV's today. My secret carpark space at the hospital was taken! The horror! I had to park on the main road carpark and walk across and I bumped into a certain lady off the cf forums who recently had a transplant so that was nice. Don't worry we were outside and I didn't cough on her!
I had loads of bloods taken for various things, I had to fast from midnight last night for them. My arm is all red and sore but no surprise there, the staff were baffled and at a loss what to do. The doctor called a dermatologist who is going to have a think about what I could do. He did suggest maybe using some really absorbent dressing like what they use on old people's bed sores or something, to absorb the weepiness. Its so bad the gauze was drenched and you could literally squeeze the moisture out of it. They said they will order in whatever they think can help me.
My weight was 56.5kg and my fev1 was 44%. So not great but better than before, the physio said we will see how it goes because sometimes it can improve after the IV's finish, which is true and I do feel like my chest is better. I shall resume my swimming and gym sessions to try bump it back up.
I told them about my side effects and they said my might give me a lower dose of colomycin next time, the nurse thought I had been crying when she saw my puffy eyes. I can't remember if I mentioned my puffy eyes but they basically got really puffy and are really dry.
I didn't have my hearing test again! I am going back on Monday for it. Apparently it was too busy so they didn't have the time and since the room isn't soundproof it can affect the results if loads of people are making noise (banging doors etc.)

I went out for lunch with my dad and had like the best lunch ever. I had Yorkshire puddings for starters (we are in Yorkshire afterall), then a toasted sandwich with chicken and stuffing soaked in gravy with onion rings on the side, then for dessert a jam roly poly pudding with custard. Yes that's right I ate it all! My dad said he doesn't know where I put it.

The project I volunteer for has a newsletter which we can all contribute to and volunteers are responsible for organising it. I asked if I could do a article on cf and have spent the afternoon doing that, plus other various bits and pieces. I'm so glad the sun is making an appearance, it makes you feel so happy!

Thinking of Vicky

Vicky off the cf forums is really not doing well, if you can remember I said she was coming out of hospital quite awhile ago after spending Christmas in there. Well she went back in about 4 days later and has been in ever since, so she has basically been in hospital since November. She has lost loads of weight, I think she said she was about 36kg and she is now having total parental nutrition (http://en.wikipedia.org/wiki/Total_parenteral_nutrition). There is something wrong with her peg (a device put in your stomach so high calorie formulas can be put straight into your stomach) that she usually has her feeds in and they were going to try fix it but they cancelled her operation. She has had a blood transfusion because all the antibiotics have messed with her kidneys so now she is off the antibiotics and her infection levels are slowly rising, I think she said her crp was over 100 (bear in mind mine was 37 and classed as slightly elevated). To make matters worse, her port is virtually useless as the stupid surgeon put it in her armpit, yes her armpit!!!! So she is having all this done through longlines (lines put in a vein in your arm) which keep giving up on her because like most cfers her veins are all thin and useless from been used so much. She is unsurprisingly scared and losing her fighting spirit although still keeps sneaking on the nurses computer to come on the forum and even asks other people how they are doing. So please have her in your thoughts and prayers.

I watched that female prison programme last night and it made me so mad. Women moaning that prison makes them unhappy, well isn't that the idea...? It's not supposed to be a holiday! Objective achieved if you ask me! One woman was released and they gave her a tent as no hostels etc would accept her whilst she was on the housing waiting list due to her aggression and anger problems. The prison officer said that it was disgusting that in this day and age this is what they had to do, erm no I think its brilliant! Why should people put up with people like that? There is only so much help a person can be expected to receive, she is lucky she got a tent..! ;o) How is it fair that people in prison who have committed a crime get free tv, hair cuts etc and poor Vicky who has been in hospital since November has had to pay hundreds of pounds to patientline to watch tv? Plus I have heard the stupid thing constantly breaks down. I am so grateful that on our cf ward we get free TVs and Internet because when your in hospital what else is there to do?! Apparently patientline do a long-stay package, this covers 3 days.... need I say anymore...?

Mirrors

Well I decided to go see the film, I'm hardcore you see...! Pete drove us to the cinema as I didn't think I was in a fit state to drive. The film was quite scary but not as scary as I thought it would be. The dead kid was scary and there was a freaky dog with a twisted around head. I am now scared of looking in mirrors again, this has always been a fear of mine for as long as I remember. The fear was promoted when I saw a film with Halle Berry in and she is driving and looks in her windmirror and there is a ghost sat on her back seat. Also in the grudge 2 the dead girl is in a mirror, window reflection etc in like every scene, I remember Pete and I screaming every time we saw her, it was so funny at the time. She is even in someones desk in one scene. In The Unborn they say mirrors are a path into our world and that's why the demon goes after twins as they are like mirrors (although in nonidentical twins I cannot understand this idea so much). So now I am scared of mirrors again, I'm glad I have never seen the scary film that is called 'Mirrors'! I remember when I saw The Grudge I was scared of getting into bed for ages, as the ghost woman crawls up the bed and kills someone! It didn't help when Pete did it to me in the middle of the night making the funny noise she makes and crawled up the bed! One of the scariest films I've ever seen though has to be The Ring. Oh my god it is sooo scary I don't think I could watch it again, argh! when she crawls out the TV! I once dreamt that happened, it was not good! Also in the Ring 2 I think it is, when she is crawling up the side of the well and is moving all weird, I think I nearly had a heart attack from fear!! I'm all scared now just thinking about it and I'm at home by myself!... Argh!

Yesterday I still felt pretty rubbish but I got up about half 10 and got ready, then watched some film about the last Russian royal family who were killed. I didn't get to see it all as we took Alfie for a walk which is a shame because I was quite enjoying it! It was so busy around the lake because it was a Sunday and a nice day. We then went to my mums for tea and my Auntie was there too. My brother has got a new sporty Clio and took us for a spin in it, I feared for my life at times.... Then Pete and I went home and watched Terminator. Wahoo! Can you believe Pete has never seen Terminator! The shame! Terminator 4 is coming out in June so he needs to get up to speed with the story, its got Christian Bale in it, can't wait! Pete and I have some weird obsession with Christian Bale, I am obsessed because he is fit and Pete must think he is cool, he is Batman and John Conner after all! I think he is cool too and he always plays moody, weird characters...so sexy :o)

Guess what else is coming back in April (In America, not sure about the UK), THE TUDORS!!!! I need to calm down, the excitement is too much....!!!!!

Nightmare!

All I have been doing is sleeping, I only woke up today at 12.15 and I could have easily gone back to sleep. I have absolutely no energy what so ever, I feel so weak and pathetic and haven't left the house for 2 days. I have literally done nothing, its not something I'm proud of, I have been wearing my tracksuit bottoms and not fully putting my makeup on, anyone who knows me will know its serious! I always wear makeup! I am feeling very emotional but I keep reminding myself it's just the IV's and I'm fine really.

I am having horrible dreams every single night and so not sleeping well and I now I am having nightmares. I dreamt last night that Pete and I were cursed and I was laughing to Pete that we shouldn't argue as this would make the curse worse. I then went to bed and I had a dog on my bed but it wasn't Alfie, it was an English bulldog I think. Anyway it slept at the foot of the bed and I didn't ask why it was there and then it came up and started licking my neck and ear and I remembered that the curse has told me that this meant the dog had something to tell me. I then could hear this woman making a moaning sound like she was in horrible pain and it was right in my ear and wouldn't stop. I woke up and I could still hear her and I knew I was awake but I couldn't move and my body was literally frozen. After what seemed forever I could move and I jumped out of bed and went to find Pete (he slept on the sofa last night as he went on a drinking night out and snores terribly). I tried to wake Pete up and told him I was terrified but Pete was useless and just said something totally irrelevant in his drunken state. So I went back to the bed and turned my lamp on and started crying loads as I was terrified. I don't even know why because the dream doesn't even sound that scary, I think it was the sound of the woman that was the scariest. I also remembered reading somewhere that dogs were messengers of the dead so I was freaked out! Usually I know I am dreaming as i'm watching myself in the dream but this was different, I was in the dream and didn't know I was dreaming, it was so real as I was in bed by myself just like in the dream. I just lay in bed with my eyes wide open and I was scared to look in the mirror. I must have drifted off eventually and turned the lamp off at some point.

I am supposed to be going to see the film 'The Unborn' tonight with my friend which is about a ghost child stalking his twin and looks well scary, I am debating as to weather I should still go see it!!

So in conclusion, my IV's are making me slowly go crazy...

Missing the target

The nurse was supposed to come see me today at 12, she came at 10am. I do remember hearing my house phone ring when I was in bed but I ignored it. It was the hospital asking if she could come early, they also left me a voicemail on my mobile which I only just turned on about an hour ago (I am terrible at remembering to turn it on!). Anyway it didn't matter, it just meant I was still in my PJ's and I hadn't had chance to vacuum up. The nurse said she had gone to see someone else and they had forgotten she was coming and gone to work, so she was ahead of schedule.

The scales said my weight was 43kg, I was like 'what?!', but she gave them a kick and then they read 56.1kg (good old nhs equipment). I'm surprised I haven't put weight on because I have been eating loads the past few days! My sats were 98%.

Then it was time for the needle change. It wasn't as crusty as I expected but was still pretty manky, she took the needle out and gave it a good clean and god it made it itch sooo bad!! I got told off for trying to pick it a few times and then she went to put the new needle in and missed my port! argh! I knew something was wrong when she said 'Gemma does that feel OK?' no it didnt but it always stings... so anyway I turned to look and only the tip of the needle was in my arm, she was hitting the outside of the port and it wouldn't go in any further, thank god because if they miss the port and stick the whole needle in your arm, it is bloody painful! So she took it out and there was blood dribbling down my arm. I had to move around abit so she could get a better grip and get the needle in properly then she cleaned up the blood. She was very apologetic, its the first time she has ever missed so I wasn't too bothered, it stung for about an hour afterwards though. I now have dermafilm dressing on again and some gauze as I definitely think its the needle causing the problems, so I have some gauze stopping the needle touching my skin, plus I can't see whats happening and so are not tempted to itch it.

Today I have done nothing, I actually went back to sleep after the nurse had gone and then I've just been sat around watching TV. I'm really tired, I can barely remember doing my drugs at 7 this morning, I think I must have done them half asleep!

Leaking needle?

My port-dressing situation is going better than last time but still not great. I changed the dressing on Tuesday as it looked like there was water trapped underneath, it was very hard to peel the dressing off the needle without pulling it off and I was ekking alot! So I put a fresh dressing on and then on Wednesday I could see yellow water around the needle moving about, so I went through the whole routine again and changed the dressing, giving the area a good clean and getting rid of a few crusty bits. Today it was even worse! There was loads of yellow liquid and my arm around the needle looked all wet so I took the dressing off again and all this yellow stuff dribbled down my arm! I gave it another clean and let it dry fully with some gauze on to absorb any liquid, I then flushed my line with no dressing on to see it the needle was leaking and couldn't see anything. I then discovered I had no dermafilm dressing left so I put some tagaderm on which didn't even stick to my arm properly at the top and was coming off by the time I had, had a bath! So I put some cosmopore E on, this means I can't see what is going on and I think its the best way! I constantly want to mess with it and worry about it. It doesn't feel wet anymore but I haven't had another dose of drugs yet so if it the needle leaking I will find out in about an hour! I imagine it has dried and will revel a nice crusty layer when the nurse comes to change the needle tomorrow. I'm getting pissed off with it, like I said its not as bad as before but its still not nice, its not itching though and I definitely don't think its the dressing as it definitely seems to be based around the needle area. Hopefully it will just be the needle leaking and when I get it changed tomorrow it will be OK

I'm finally starting to get my incapacity benefit, wahoo! I get my mum to call them now as I called them last week to see how it was going and the guy was horrible and said I wasn't going to get anything! So I started crying thinking I was going to have to go back to work and all sorts, did he not realise how much of an impact his response could have on someone?! So my mum called and they said to her it was been processed, why couldn't they be nice to me?! I got a letter saying I qualified and I will get backpayments from February. My mum also asked about permitted work as I would like to work a few hours a week just to do something and they said as long as I don't earn over £20 a week it's OK. They are sending me some information and a form to fill in.

Today I went for a walk with my mum, Nana, Nana's husband and the pooches. I then went to the gym and did 11 minutes on the bike and 16 minutes on the treadmill, the most I have done, yippee!! Here is me wearing my super cool new tshirt for at the gym

Dogs attack!

After my frightening experience walking the dogs the other day I had another one on Thursday! Two Jack Russell type dogs but alot bigger were off their leads and decided to bully Alfie and Murphy who were on their leads. As they approached Alfie growled at them like he does, but they decided to pick on Murphy. Poor Murphy was running away from them and making like screeching noises as these dogs growled at him and were jumping and head butting him, poor Murphy rolled on his back in an act of surrender. One of the dogs even bared its teeth and I pushed it away and shouted 'no!' at it and held onto Murphy. So then they decided to go for Alfie, Alfie tried to put up a fight but he also started making screeching noises, they were obviously both very scared as these dogs were about 10 times bigger than them. Eventually the owner grabbed one of them away and I pushed the other one away. I then had to untangle myself as I was trapped by the extendable leads as the dogs had run around me. I was quite shaken up myself to be honest. Both dogs seemed fine but very edgy for the rest of the walk, staying very close to me and backing away from other passing dogs. They are obviously both going to remember his experience and never be friendly with other dogs. I hope the owner has learnt her lesson and will keep her dogs on leads from now on!

On Friday I went to the gym and was surprised at how much difference the IV's have made already. I was alot less breathless and wheezy and hardly coughed, although I suspect this is something to do with the fact my mouth and lips are really, really dry from my IV's/voriconazole. When I left the gym I had a text from my friend saying 'are you in a world of your own?!'. I replied 'I have no idea what your on about but yes I am... have I ignored you or something?'. Apparently I drove straight past her and she was waving to me. It doesn't surprise me, I do walk around in a daze half of the time when I'm on my IV's or when I'm tired in general which is alot of the time. I don't know how I get from A to B sometimes. My vision is blurry quite alot at the moment (a side effect of voriconazole) and I seem to have lost my balance slightly (at the gym I had to hold on to the sides of the treadmill to not fall over!). I feel like I kind of am not in my body and am floating, it's very strange, so I'm not surprised I don't notice things happening around me!

Saturday night Pete and I went to see the Watchmen at the cinema, this illustrates I am feeling better (even though I feel like some drunk, floating, dry mouthed weirdo) as last Saturday we cancelled going to the cinema because I felt so unwell. The Watchmen is a very long film, it all comes together at the end, just a shame it takes about 2 hours to get there.... I was bored after an hour.

At the weekend it was Pete's nephews 1st birthday so we went to his birthday party. There was a buffet and all Pete's family were there. We took Alfie and he was quite naughty at times but OK overall. We have to keep him on his lead as he doesn't like the baby but the baby likes him so we just keep them apart. Alfie growls at the baby if he gets too close, its not the best situation to be in. My idea is that if he meets him alot then eventually he may learn to like him (works with everyone else) and obviously as the baby gets older we can get him to give Alfie treats and things but he's abit young at the moment. I had to do my IVs infront of everyone which was fun..... I do wonder if they look at me and just think 'couldn't Pete have got a healthy girlfriend?' I don't even know what they think of me as Pete doesn't really discuss my cf with them from what I've seen. I don't know if they think I'm really poorly or if they think it's nothing, I guess a happy medium would be nice. Maybe they don't care or maybe they want to ask me loads of stuff but don't want to upset me. I don't know atall, but I do know that people do not know about cf and they have no idea about how it affects the person, as people with cf look so normal and healthy and get on with it which can be a positive thing but also a negative. I might have seemed ok to an onlooker at the party but I was very tired and found it hard to concentrate and half of the time I feel like I'm putting on an act to get on with everything and have a good time.

I was so tired last night when we got home and now starting to feel abit run down, so going to take it easy today. Here's a video of Alfie playing with his toy for your entertainment

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!