Naughty Blogger!

Oh dear naughty blogger! *smacks hand*

In my defence I've had a rough start to the year with our first IVF cycle with our surrogate ending with a chemical pregnancy (see surrogacy blog for more details). So my head has been all over the place, one minute I thought I was going to be a mummy and the next minute I wasn't. Anyway we are going to be trying again very soon and I hope to have better news on that front next time!

So it has been my birthday and I'm very quickly heading towards the 30 marker! At least I'm an even number now, I'm slightly strange I know...!

Pete and I went for a short trip to the lakes after our bad news regarding the pregnancy, to spend some quality time together, alone and away from everything. I know i really needed it, I'm not sure about Pete. Amongst other things, one thing I hate about not working is the loneliness and troubles it brings. Sat in the same building day after day with only a dog and your thoughts for company. It's dangerous and I really, really want it to start getting warmer so I have the ability and will to get out of the house more often! It's simply too cold to venture out very often, its not worth it with the coughing and breathlessness it brings.

Last Monday I went to see Girls Aloud, yep, fourth time! I think I may possibly have seen them every time they have done a tour. I also booked tickets with my friends last night to go see The Big Reunion tour in May. If you haven't heard about this, it is bands from the 90's reuniting like 5ive, 911 and Atomic Kitten and putting on a massive cheesy concert, it's going to be great!

In CF news I have been told I need insulin treatment and then been told actually I might not do. It's all slightly confusing and annoying and has been dragging on since October! My gluclose tolerance test last October came back saying I have mild diabetes, so I monitored my blood sugars for a week and the dietician decided she wanted me to wear a constant monitor for five days. A small catheter is put in your stomach by using some kind of stapler device (really small needle) and then a small probe is attached which constantly monitors your sugars. You still have to prick your finger four times a day to check the monitor was working properly. You can still shower and even go swimming with this device attached to you so it's not too bad to have attached. I then removed it on my own and posted the probe back to the hospital. Here it is

 I then caught a cold and as usual started to get chest pains, was sleeping lots and had very little energy, after taking oral Ciprofloxacin for a week I went to the hospital for a check up. My lung function was slightly down to 40% so nothing major and the consultant decided to have a good look at my medical history and test results whilst I was there. He decided I could need insulin looking at my results and he wants to try me on a new nebulised antibiotic called Azli (nebulised Aztreonam) rather than having Tobi (nebulised or inhaled Tobramycin). He said I needed to be admitted to start the insulin and he wanted me to have IVs on the ward rather than home IVs to get some rest as I looked stressed (I was). So I was put in the waiting list and said to wait for them to call me. 

After a week of waiting I felt much better and decided I didn't actually need IVs afterall, looks like two weeks of Ciprofloxacin had done the trick for once, seriously, its a miracle! So I called to let them know and turns out my name wasn't even on the board, someone had forgotten to put me on! 

The dietician said I still needed to come in to start insulin as I needed to be monitored. Fast forward two more weeks and several phone calls later and I still didn't have a bed due to lots of emergency admittances and I was getting rather annoyed as I wanted to start the damn insulin and also the nebulised Azli.

The main CF dietician who was now back from her holidays decided she wants to retest me as the probe didn't collaborate very well with my own monitoring. She was very apologetic and explained it seems there has been a lack of communication and misunderstanding with what was happening with me. So yesterday I went for the monitor fitting again and to try the new Azli nebuliser.

She explained everything to me and I will try to explain in how I understood it however I do find the whole blood sugars thing very confusing..... I do get high sugars (over 10) but not really high and not in any clear pattern, I also get low sugars (under 4) so she is worried if I had insulin I would get even lower sugars which is dangerous. If I do need treatment they need to work out what type of insulin I'd need, I didn't even know you could get different types! My HbA1c (a measurement taken from your blood) is 48 which is above normal but a good number for someone with diabetes (apparently the aim is between 48-58). So once they get the results from this monitor they are going to decide what to do with me. 

Diabetes is something that many people with CF develop and is called CF related diabetes (surprisingly!). From what I've read it's a combination of type 1 and type 2 diabetes. Mucus in the pancreas damages the cells that produce insulin over time and the body becomes insulin resistant due to chronic infection.

So I go back in two weeks to get my results and pick up the Azli they have ordered for me as I tolerated it fine (I can't get if from the GP as it's too expensive).

Happy Festive Season!

I'm still here! 

I have recently discovered the joy of the mobility scooter! If you know me you will know I hate shopping of any kind, it makes me tired, I get out of breathe, I feel lightheaded, get headaches and I avoid it all costs. We get our food shopping delivered (when Pete is home to help unpack) and I just avoid doing any form of shopping in general. This is OK for most of the year as I don't have any money to buy things anyway, however at Christmas time it can become more difficult. There is only so much online shopping you can do, sometimes you just need to see the item in the flesh or try it on etc.

Say hello to the mobility scooter! Most shopping centres have them to rent for free, you book them in advance for however long you like and off you go! Now obviously there are downsides to these scooters, for a start they are not exactly very cool and I think it took a lot of nerve for me to admit that I needed to use one as it's just another way my CF makes me feel useless, feel different and acknowledge I have a life threatening illness that is worsening slowly. Secondly, there is a high demand for these scooters at this time of year and it can be difficult to book one. So you have to plan way ahead when you are going to go shopping and make sure you call as early as possible to book one and you have to turn up at a certain time and leave by the end of your session. You can't just think, ohh I'll go shopping tomorrow when I'm up and ready. It requires planning. Thirdly, these scooters are pretty big and won't fit in shops, I ended up taking out a box a mannequin was on the other week at the gap wasn't big enough! So you spend a lot of time getting off the scooter and going in the store or to look at a certain item as you can't get to it on the scooter. Lastly, they beep when you reverse, it's so embarrassing! As if it isn't bad enough being in your 20's on a scooter, without the damn thing beeping loudly when you need to reverse, and by the way people do not move for you!  

So yes, the mobility scooter, a life saver for shopping but not exactly something a woman in her 20's wants to be familiar with. Here is a picture of me stuck trying to get out of a lift, naturally Pete took a photo rather than help me...!

I'm rather excited to tell you I have a new inhaler that replaces my tobi nebuliser! I nebulise tobi which is the antibiotic tobraymcin twice a day, I nebulise tobramycin to try help control the infections on my chest. Through the old type nebuliser called a porta-neb this would take 30-40 minutes for each dose and that just one thing I nebulise every day. Then the I-neb was introduced and this cut nebbing time for tobi to about 15-20 minutes for each dose. Now I have a tobi podhaler which takes about 6-8 minutes to do each dose! But the greatness doesn't stop there. The capsules do not need to be refrigerated as they are a powder not a liquid, everything is delivered to my house (no GP's or chemist required!) and nothing has to be washed afterwards. I'm really impressed with some of the advances in CF happening at the moment, its improving not only quality of life as it means less time doing treatments but also it will improve compliance with treatments as well. I'm going to do a video of me doing my podhaler for my next blog but here is a picture in the meantime. The white tube is not actually the podhaler but the case, the podhaler is inside and much smaller. It does make me cough quite a lot, particularly the first breath and I find I have to do three inhalations per capsule rather than two as they suggest to breathe it all in. Also I am having to try it one month on - one month off rather than being on it constantly (I assume due to cost) which I'm nervous about. However so far I am impressed!

Following on from my last post I'd like to share the latest comment I've had that has upset me. A few weeks ago my friend and I went to see the new Twilight film (judge me all you want...!). The car park for the cinema is lower than the cinema so you have to walk up lots of steps. I tried to park in disabled but it was raining and cold so of course the spaces were all full of people that are not disabled. Therefore we had to walk up loads of steps in the cold and hence I was coughing away. A couple in front of me turned around and asked if I was going to see the James Bond film? I shook my head (coughing too much to speak) to which the man replied, 'good!'. His partner then quite nastily told me I should be in bed not at the cinema! My friend said she was so mad she had to bite her tongue! I was concentrating on trying to breath too much to have any kind of thought at the time. Don't you just love people, more concerned about their film viewing than if the girl behind them can breathe or not!

Merry Christmas to everyone! xx

My Little Munchkin

Sorry for lack of blogging, I know know....!

I finished my IVs two weeks ago and my lung function was 42% so back to normal and I felt alot better. The Doctor and I have agreed I am going to start one month on and one month off Tobi nebs again to see how I cope, its to do with costs and how toxic they are, plus the time they take. I must admit the last two weeks have been wonderful, only having three nebulisers to do rather than five! I am worried though that when I go back in December my chest may have suffered as a result, not good so close to the busy festive period!

The day after I finished my IVs I felt terrible, I was so tired and my whole body ached. The thought that my IVs hadn't worked made me so miserable I just curled in a ball and I slept most of the day because of the tiredness. Then the next day I felt great! As I was driving back from yoga I realised I'd had my flu jab when I finished my IVs and that is what has made me feel so tired and achy! I have never felt like that before with a flu jab, so it must just be this years vaccine for some reason.

Two weeks down the line and my chest isn't the best but I think most of it is down to the weather becoming colder, I took Alfie for a 40 minute walk yesterday and my chest hurt the rest of the evening, it felt like it was burning and I must have loosened lots of mucus as I coughed all evening. This doesn't help my shoulder and upper back situation, they've been sore for about 10 days and it hurts so much when I cough. I don't know if I have pulled something or what but if it hasn't gone by my next outpatient appointment I'm going to mention it.

The hole in our ceiling is finally fixed! However we decided to decorate the bedroom whilst it was empty, so we are still in the spare room until next week. My mum has done the wallpapering today and I've finished off the paint, half the glossing is done so we are nearly there, this week has been tiring and I haven't even done that much!

I don't know if I mentioned on here but we are doing some behavioural training with Alfie at the moment to try encourage him to be more sociable. We are doing BAT (behavioural adjustment training) with teaches him to think before he acts, easier said than done! We also have a sounds CD to desensitize him to sounds that scare him such as fireworks, traffic, children etc. Not really sure how well it is going but I'm trying my best! Here are some pictures of my little munchkin as requested, aw I love him so much!

On our walk yesterday

All snuggled up in my blanket, he likes the cold weather about as much as I do!

Catching some rays whilst he can!

Wee Fatty Bum Bum

I had outpatients on Friday, I had a feeling I might need IVs as was feeling very tired and coughing alot even though I didn't feel like I needed them if you know what I mean! However my lung function is up to 43% and my weight is 57.1kg! I had my port flushed and the nurse missed first time and got the needle in the second time. Yes it hurts when she misses, she is basically sticking a large thick needle, nothing like a vaccine needle, into my muscle, I've now got a little bruise! The doctor asked her to take some blood just to take my tobramycin levels as I keep feeling dizzy and she was worried I had too much tobramycin in my blood as I'm on tobi nebulisers all the time rather than one month on and one month off. To be honest I just think its because I'm tired from the holiday, I haven't heard anything from them so I guess they were OK!

I'm surprisingly bothered about my weight, I felt I'd put weight on but thought it might be just in my head. But it seems I've put on 2kg on and it appears all on my belly so I'm going to try up my exercise and cut back on snacks slightly just until I feel better about myself. I need to pick up on my exercise anyway, I've slacked off and even Alfie has put some weight on so we need to go walking more often! I'm not obsessed or going to starve myself (I've had two takeaways since Friday!) or anything, I just don't like having a belly that is flabby and sticks out! I know people will think I'm pathetic thinking this but its the most I've weighed in about 3-4 years, I just need to tone up abit I guess, I'll probably be back to 55kg by my next appointment and I I'll eat what i normally eat, my body is just like that.

Something creepy happened the other day, I had finished my nebuliser and was going to wash it and there was a bug in it! Right by the bit where the mist squirts out into my mouth! It was a little black bug with orange spots and a wiggly tail. I was so freaked out, I have no idea how it did not get squirted into my mouth! Now I keep checking every time I do my nebulisers, ew!

The Festive Season

Dear Blog, I am sorry I have neglected you over the last month. What can I say? I have been busy and not had much to say! I promise to give you more attention from now on...

Happy New Year everyone! Lets hope that 2011 is going to be a good, happy and healthy one! My new years resolution is to learn how to knit! I am starting my lessons this months with a friend from Scope, so put your orders in for scarves etc haha!

Here's a run down on what I have got up to over the festive season...

On Christmas Eve we went to my Nana's like we do every year

My brother and his girlfriend


Two of my cousins


Christmas Day we went to my Dad's for breakfast, his heating has broken so we were kept warm by the smallest heater ever! Good job I got a new coat for Christmas! We then went to see my Nana then went home and waited for my brother to come and pick up us. He rang us after about an hour to inform us he had forgotten to come and pick us up! So we made our own way to my Mum's for Christmas lunch, then in the evening went to my Aunties for a party.





On boxing day we went to my aunties from my dads side and I finally got to meet his girlfriend and then on the Monday we went to another aunties from my mums side.

Then on Wednesday we made our way over to Stockport to see Pete's family, I am terrible at remembering to take photos, I have told Pete to get some off his Dad, but so far no luck! Pete's parents bought us lots of lovely bedding and some plane tickets to go on holiday with them on the sailing boat in May, wahoo! We met up with some friends in Stockport too, I actually remembered to take some photos here!





We came home on Friday for New Years Eve, had some friends around to ours and someone came up with the smart of idea of playing a drinking game , we then went to our local pub for midnight, karaoke was involved I'm afraid to say, then we came back to ours to eat our takeaways.















Since then we have both been recovering from our busy week, watched a few dvds, got a curry etc. We do not do sales shopping and stay as far away from the shops as possible!!

CF wise I haven't been great but not bad either. I think all the drinking dries out my chest and makes it difficult to shift the mucus, then obviously all our plans have tired me out. Also I seem to have had alot of tummy/toilet problems, I'm not sure if its the iron tablets or the fact its difficult to keep control of taking enzymes with food over Christmas. I find I am nibbling on things all the time, but not enough to warrant taking a tablet with! It's probably a combination of both.
On top of all this, even though I rang up before Christmas to get some more disks for my I-neb, they still haven't been delivered and now I have one cycle left on my disk and still no sign of any more been delivered. The company assure me some were sent out on the 29th (even though I called up before Christmas!), so royal mail have let me down big time.
I also ordered some more sachets for my nasal rinse before Christmas and they still haven't arrived and it hurts too much to just use salt, so my sinuses are starting to feel congested. I also dropped off my prescription for my tobi before Christmas and it still hasn't arrived at the chemist, not that I'd be able to do it anyway as I can't use my I-neb!
So even though I have been 100% compliant all the way through the festive season, and I've felt like all I've done is plan things around treatment and spent every spare minute doing them, I now can not do all my treatments, infact from tomorrow all I can do is physio and no nebs what so ever. Why are companies incapable of functioning throughout Christmas? I manage, other people manage it! Thanks to them I'm probably going to end up on IV's, I already feel like I am slipping. So thanks royal mail, respironics, chemist direct and the tobi suppliers for nothing...! God it makes me so mad!

Good Old Wifey

Hum, I do not think I have been upto much this week of interest since I last blogged.

Alfie I went for a nice walk on Friday, there were teeny tiny ducklings walking around with their mummy and I was scared Alfie might go after them but he didn't, such a good boy!

We watched the election on Thursday night until about 11.30pm then decided we'd had enough, I'm glad we didn't stay up, as there was no winner so I imagine it was pretty boring. In our area we had our local and general elections, I registered for postal votes for both. However Pete registered to do the local election by post and the general at a polling station. He took his polling card and when he arrived was told he could not vote there even though he had a card as he was registered for postal vote! He rang me up quite dismayed as we have both been taking this election stuff quite seriously and to no be able to vote makes the last month of decision making pointless! Also there is the whole issue of his right to vote etc etc.

I called the electoral office and explained what had happened, she looked it up and said he was indeed allowed to vote at the polling station. Someone called me back and said they had gotten the local and general election mixed up and were really sorry. Pete went back down and they said they were 'profoundly sorry', think he was quite surprised at how sorry they were! So he did get to vote in the end, good old wifey sorting things out for him! Compared to the problems in Sheffield though, where people queued for 2 hours and then were not allowed to vote, ours was small in comparison. What a shambles that was!

I've run out of Tobi again! Whats wrong with me! I am slightly annoyed, I took the prescription in to the chemist on Wednesday and went in on Thursday to pick things up. She told me she had ordered the tobi 'today', I took the prescription in yesterday so why is it only been ordered today?! Grr!! I went in on Saturday and it still hadn't come in, so now I have to hope it has come in by Monday. Also annoyed because I asked the prescriptions clerk at the GPs for some vitamin K and she has forgotten to put it on, so now I have to ask for it again! Argh!!! For those of you that asked why my chemist can't sort my prescriptions... Its because my GP is not local so they do not provide that service with my GP's. The closest chemist that does is the one that is next to the GP's so I don't see the point. I'm at my wits end to be honest, the GP's write some of my medications for 2 months and some for 1 month, some they forget to put them on atall! Then the chemist has to order loads of stuff directly now which takes longer and last time, they had run out of chocolate skandishakes so just decided to give me different flavours! I had words when I went in on Wednesday. But the whole point of this rant is it so bloody difficult and as a result very hard for me to be compliant with my medication!!! I don't really want to move chemists though, they are really good at lending me medications if I run out and they know me really well, plus it's now within walking distance since we moved.

Happy Easter!

Happy Easter everyone!

Pete and I went to church today so I'm feeling all Eastery (if that's a word?), it was a good service and feels good to celebrate Jesus' resurrection. We then took Alfie for a walk which was nice if not abit cold and then I have had a little kip this afternoon.

I have been very naughty and have run out of Tobi, I knew it was running low yet still did not go to the chemist to pick up my supply as I am lazy. I went to get some out of the fridge and the fridge was bare. A little smile did appear on my face as it means I don't have to do it today and perhaps tomorrow too if the chemist is not open. Two days with only one nebuliser to do and totally not my fault....yeah yeah I know it is really but there is nothing I can do about it now!

I started back on my voriconazole as I am doing one month on and one month off, took my first lot yesterday and last night I had some seriously crazy dreams! I can't really remember them now but I know they were weird!

I've ordered a nasal sinus wash to try help clear my sinuses as I keep getting headaches again, my head just feels tense and full up all the time. Its a wash that someone recommended to me so lets hope it works, I'm still struggling with the dripping down the back of my throat, it's getting better but not gone completely. I am going to let Pete use it too and if it helps him I will buy him his own. He has a runny nose all the time and breathes through his mouth, it makes him snore and breathe heavily and he is blowing his nose all the time. Allergy tablets don't seem to help, anti congestion tablets/sprays etc don't work. The GP said it was allergies, but like I say the tablets don't seem to work. Pete being a man would rather put up with it than go to the doctors again and hence I have to put up with sleepless nights and have to wear ear plugs that make my ears hurt, although they are pretty good, they are called bio ears and I'd recommend them. He has now also started to twitch in his sleep, not little twitches but big ones that make the whole bed move. I think I can see why I am tired all the time! It's getting to the stage that once we move I'm going to banish him to the spare room, we don't have one at the moment! So hopefully this nasal wash might help out!

We are not moving until the 16th April now, the vendors can't complete until then because of work commitments! Not very impressed but not much we can do really!

Feeling Sticky!

Last week I think I might have had a virus or cold or something, not really sure. I find it difficult to tell what is CF related and what is not. My nose was runny but not completely blocked so I don't know if that was sign of a cold or just my sinuses as I have been getting headaches almost everyday, but again this could be because of a cold. It's probably abit of both as one is bound to affect the other. This has been dripping down the back of my throat and it's made me more productive than normal and my sputum has been very sticky. Infact on Sunday when I woke up, I went to spit some in the sink and it was just hanging out of my mouth as it was so sticky it was still sticking to my throat. It started to make me gag and I thought I was going to be sick! I had to pull it out with my fingers, lovely! This could have been made worse because I went out the night before so was I probably dehydrated!

Anyway, all last week I have felt abit achy and tired, very lethargic and not felt bothered to do much. Saying all this though I haven't felt terrible and don't think it's anything major, like I said, not sure what it is really!

Going out on Saturday probably wasn't the best course of action to help with whatever I had but nevermind, I wasn't even planning to go out, we went for a meal then ended up going out after. Spontaneous nights are always the best, had a really good time and got in at 2.30am. I even did my tobi neb when I got in, I'm really am surprised it doesn't make me sick when I'm drunk as it does not taste good but guess I must be used to the damn thing!

I was able to dance alot more than last time which was really good and I drank rather alot. A beggars dog humped my leg which was interesting.... I then kicked up a fuss as when we got into the club there was no handwash or soap in the toilets for me to wash my hands after stroking the dog. No wonder germs get passed around when there are no handwashing facilities! God I am getting old aren't I?!

I hardly seemed to cough which was weird, perhaps the sputum is so sticky I'm not coughing at the moment, I know there is loads there but I'm not coughing as much as usual. Weird! When I do cough it's like a big beastly cough, I sound like a bear and my face feels all red and like my veins are popping out!

On Sunday I didn't get up until about 11.30am and didn't get dressed until about half 3. So my morning physio was quite a late one! I then didn't do my evening physio until about half 10 in the the evening as I went out for another meal (too many birthdays this month). I didn't want to do my physio before I went as I'd only done my morning physio a few hours before!

My friend and I also took Alfie for a walk in the afternoon, even managed to have the car roof down on the way there! Bring on summer!

My friend Tori had another transplant call this weekend but sadly the lungs were not suitable, this is her 7th false call. From discussing this with my friends I found out two people I know would want to donate their organs when they die, but haven't signed up. These aren't bad or selfish people, infact one said they thought organ donation should be opt out rather than in. It just proves that people do want to donate but just don't get around to doing it or don't know how to. It's so silly, I'm going to send them the link so hopefully they will sign up now.

Here are some pictures from Saturday night and a video

Me and the birthday boy!

I'm so cool.....!

Come on little brother, give your big sis a hug!
So childish, messing about with Helium

Compliance over the Christmas period!

Over Christmas and New Year I didn't miss any treatments, physio etc. I haven't included tablets in this as I find them quite easy, I just take them sometime in the morning and then before I go to bed. Regardless of how drunk or tired I am. So here's how I did my physio and nebs:

Christmas Eve - We went to church at 4pm and then were getting picked up for my Nana's party between 5-6pm. So as soon as I got home from church I did my evening physio and pulmozyme. I then did my evening tobi when I got home from my Nana's, doing your tobi when drunk makes it much more fun.....

Christmas Day - We had to be at my dad's for 10.30am so we got up at quarter to 8 to make sure we had time to open presents, get ready and for me to do my physio and tobi neb. Then when we went to my mums and I took my physio and neb stuff along with me. We didn't finish out Christmas dinner until about 5pm and then wanted to get to my aunties. I had to wait awhile to let my food settle, then did my physio and pulmozyme neb whilst everyone else was playing on band hero. I was really jealous they were having fun and I was stuck doing my stupid physio, but needs must and all that! Then we had to wait an hour for me to do my tobi (if done within an hour of pulmozyme, the tobi stops the pulmozyme working). This meant we were late to my aunties but least it meant I got my treatments done.

Boxing Day - This was quite difficult to plan. We went for chinese at 5pm and then went to my aunties afterwards. This meant I could not do my evening physio before we left as it would have been too early, I would have had to do it about 3pm! So what I did is do my pulmozyme at home and then took my physio stuff and tobi with me in the car. I figured the tobi was OK in the boot of the car as it was at least 0 degrees outside so cool enough to not be in the fridge! Once we got to me aunties I put the tobi in her fridge (could have left it in the car though). After about an hour of been there, Pete and I went upstairs and I did my physio in one of the bedrooms and my tobi neb. I didn't wash all the stuff, I planned to wash it when I got home. Pete didn't have to go upstairs with me, but it's nice to have some company when you are going to be there for about 20-30 minutes!
We got a taxi home and I left my stuff in the taxi! Panic! I didn't realise when we first got in and was putting other stuff in the steriliser then wondered where my acapella and tobi chamber was. Luckily the taxi firm decided it wasn't worth keeping and Pete went to pick it up the next day. Phew!!!

Visiting the In laws - The Thursday-Friday between Christmas Day and New Years Day we went to see Pete's family and stayed over. With regards to tablets I just take what I will need in one pot, I know what all my tablets are and don't need to split them in to days. I know what I take and when. I did my morning physio and tobi neb before we left and then I did my evening physio and pulmozyme neb in a separate room. Pete came with me for some company again. Again I put my pulmozyme and tobi in the boot whilst we drove over, to keep it cool and then it went in their fridge. Pete got me a clean towel from the cupboard to put everything on to dry once I had washed it. I then did my evening tobi neb whilst we were watching a film, I'm not bothered about doing my nebs infront of Petes family.
The next morning I did my physio and tobi neb in the bedroom we stayed in after we'd had breakfast, and then we were home for my evening physio which I did earlier than usual because it was New Years Eve.

New Years Eve and Day - New Years Eve I just did my physio and pulmozyme abit earlier than usual then I did my tobi when we came home that night. Again, I was very drunk and surprised I even managed to put it together. I was shortly sick afterwards so not sure if the tobi neb contributed to this, however I think the alcohol was the most likely culprit...!
On New Years Day I did my morning physio in our bedroom as my friend and Pete's friend had stayed over and I don't like doing it infront of them. I knew they could hear me, but as long as they don't see me I'm not bothered! I did my tobi neb infront of them, that doesn't bother me.

So you see, all it requires is abit of planning and some will power! I'll continue to go through days as they occur when it's more difficult than usual to be compliant, for example when we go on holiday, social activies interfere etc.

Compliance

Over 2009 I have become very compliant with my CF treatment, it was part of my aim to reach fev1 of 60% which never happened but at least I tried!
I was thinking how compliant I had actually been and I think I have only missed 3 physio sessions out of 730 (since I do physio twice a day). These were a) on my wedding day, I only did physio in the morning b) coming home from Thailand due to time differences and been on a plane I missed a session somewhere along the way c) the wedding we went to in November because there was noway I could do it in the evening really as we didn't have a room. There may be a few others, however I think I'd remember as I have been very determined.

It's a shame these kind of achievements are not recognised so that I can get a pay rise or a bonus, sadly it goes unnoticed by the world and I don't even feel better for it, it just keeps me going. I just have to try and think that if I hadn't done this, I would be worse off that I am, not great compensation but it helps a little.

Many people with CF find it extremely hard to be compliant with their treatment, I can't blame them. It's not easy! Some have said it's their New Years resolution, so I'm going to blog about times I find it difficult to be compliant so try help them overcome problems they also face.

So first this is my treatment routine (doesn't include gym and tablets with food)...

Morning (sometimes early afternoon!) : morning tablets, morning physio which is usually pep mask with me patting my lowers, I do 4 on each side sometimes 5 if very productive. Followed by tobi nebuliser on the i-neb (I do tobi all the time, I do not do one month on, one month off). Cleaning it all and put to dry.

Evening : Physio, I either use the acapella (I do 10 cycles of 10) or get Pete to pat my uppers whilst I use my pep mask (4 on each side, sometimes 5) followed by pulmozyme through the i-neb, clean it all and put to dry.

Late Evening (or at least an hour after the pulmozyme) : Tobi through the i-neb, clean it and put everything in the steriliser for the night. Take evening tablets.

So that's the basics, its quite easy to do if you can be bothered (a task in itself) and nothing gets in your way e.g. nights out, getting up really early etc etc

Factors that help me be compliant

• Physio is important, you cannot miss it, let people know this and yourself! They wouldn't expect you to miss doing your insulin or taking a tablet, physio is just the same. The effects if you miss it are not instant (although you will probably feel more productive that day) but they can be in the long term.
• Saying you will do it later won't make it go away, just get it over and done with. Also washing those dishes or changing the bedding is not more important....stop putting it off!
• Yes if your mates/family are over and you do it in another room they probably can hear you... but... you have CF for gods sake what do they expect? Maybe hearing you cough your guts up will do them some good too.
• If you need to get up early, do your physio first. Otherwise you will be rushed and claim you don't have time for it if you leave it until last. You may even subconsciously take longer to get ready so you don't have time..... you sly thing!
• Yes it's your birthday/Christmas/Easter/your hamsters birthday bla bla, do you think your lungs know this? Those infections don't care and will continue to breed and destroy your lungs whatever day it is so don't think you can take a holiday because they certainly don't!
• Don't rely on parents/partners/mates to force you to do your treatments. They won't force you and even if they try, you will talk them out of it because afterall you are the expert and they will believe what you say. You must force YOURSELF, it's called willpower!
• Self pity is permitted but remember - bacteria do not feel compassion, so continue to fight those ba$tards!

In my next blog I'll go over instances during Christmas/New Year, when I have found it difficult to be compliant and how I got around it!

World record for the longest blog!

Ok so now I am feeling more myself after a few horrible days of feeling disorientated, sick and very achy I can do a blog that doesn't consist of just pictures!

Ok so our wedding was fantastic. Everything went perfect, the weather was brilliant, the food was gorgeous, the band were great and everything ran smoothly. Unless you have had a wedding you have no idea how much planning is required, stupid things you don't even think of like how will the bride and bridesmaids get their sleep over bags to the reception, how will the flowers from the church get to the reception etc etc.

The night before I could not sleep atall, I think I got maybe an hours sleep at the most. I thought it was nerves but looking back I think I was just excited because once I got to the church I didn't feel nervous atall, I enjoyed the whole thing. I couldn't eat either, but once the wedding had started I ate everything given to me, I even managed to scoff some of the evening buffet.

Our first dance was Flightless Bird, American Mouth by Iron & Wine, its a really beautiful song. The band learnt the song for us and performed it really well.

Pete and I were so tired the next day we slept all afternoon, its exhausting the next day as you can't just go home. You have to pack everything into your car and say bye to everyone who stayed over, and they all want to ask you about your honeymoon etc, I was like 'just let me go home!!' haha.

Then we had a few days to prepare for our honeymoon. We opened all our cards and the few wedding presents which people had brought to the wedding. We got LOADS of gift cards for debenhams so went and bought a few last minute things for the honeymoon.

So Tuesday arrived and we headed to Manchester for our long flight to Bangkok via Dubai airport. Almost there and I realised I had not packed any extra disks for my I-neb. For an I-neb to work it has to have a disk in it, these disks have so many cycles on them and then they run out. I am having to use emergency disks which only have 30 cycles on them, well I go through 5 cycles a day, each tobi does uses 2 cycles so thats 4 a day and then 1 for my Dnase. I had packed one disk and had about 9 cycles left on my current disk. Doh! So I rang the hospital and we agreed I had enough disks to do my tobi once a day and my Dnase whilst on holiday. Not a great start to my so called well planned holiday! Incase anyone is wondering how I kept my tobi and Dnase cool, I used a frio bag (http://www.friouk.com/). I ended up leaving half my tobi in Petes parents fridge anyway as there was no point in taking it all with me!

So I got on the plane and they brought over my oxygen and it was a stupid mask, I asked about a nasal one. No apparently I had asked for constant oxygen and a mask. Great just what I need is a nice sweaty face, everyone looking at me and having to watch the films through half of my glasses as they don't rest on the mask properly. Not to mention the elastic thing messed up my hair! Then they start asking me if I can feel the oxygen working, erm what?! Tell me how exactly can I know the oxygen is working? There is oxygen in the normal air and I'm not having this oxygen because I am currently gasping for breathe, then I might know it was working. The they were not really sure how to work the thing, on the way home the guy put the cylinder up full wack at like 6 litres or something ridiculously high (I needed 2 litres), I could tell it was working then since it was nearly blowing my face off! Its a good job I figured out how it all worked pretty quickly, for some reason they expected me to know how it worked, I've never had oxygen before so why should I know?!

From Manchester to Dubai the seat next to us was spare so I could put the tank there, but then my luck ran out and for all other journeys I had to have it in my leg space. Not very comfy when you are sat there for about 7-8 hours! Lets just say I do not plan to go long haul again if I require oxygen, coming back I was so uncomfortable and tired I wanted to cry.

I also did my physio at Dubai airport, which was interesting. Pete and I went to the medical assistance room and I explained I had cystic fibrosis and could I do some of my physio in the room. They though I'd had surgery and needed physio for that, after what seemed like the longest conversation ever they finally got the jist of what I needed. But then the woman sat there trying to pretend she wasn't watching me but clearly she was. On the way back home, I didn't bother, I just missed that one physio session.

Another cf thing I found quite funny was when I got on the plane this guy was making a big fuss about needing water for one tablet he needed to take. This reminded me I needed to take mine so I pulled out all my bags of tablets and proceeded to go through them all, the guys face was priceless :o)

So we got to Bangkok and stayed there for 3 nights. We did a temples tour and went to the Grand Palace, It was extremely warm in Bangkok and apart from Temples and shopping (which I am not interested in) there is not much to do. I wouldn't go there again.

The first day I had loads of blood in my sputum, I hardly ever get blood in my sputum so I was abit panicky. Luckily by the evening it wasn't as bad and had gone by the next day, it did keep reappearing through out the holiday. No idea why, my chest was pretty good on holiday, I didn't get breathless easily and my cough was hardly existent (I still did have random massive cough attacks in the most inconvenient places though) although I was very, very productive for every physio session and still am.

I'd just like to point out I did not miss one physio session (twice a day) or any nebs or any tablets throughout the whole holiday which I am quite proud of!

So then we went to Chaing Mai for 3 nights, this is in Northern Thailand. We did another Temples tour and then did the elephant riding which was brilliant. We got to feed them, they painted some pictures and did some tricks and then we got to ride them, very bumpy ride! We then went on a bamboo raft where we got to wear the really cool hats! We then went to Tiger Kingdom and got to stroke the tigers for 15 minutes, it was amazing. These tigers were like big pussy cats, they were not scary atall. There were 3 of them in the enclosure with us, the guy kept playing with them to keep them awake as they just kept going to sleep haha. We then went to an orchid farm, Thai's have orchids everywhere, you get them with your food and everything. It's a very colourful place and Thai's are very friendly and helpful and if they do something they do it right. No half jobs over there!

Our final stop was at Koh Samui, an Island at the bottom of Thailand and we stayed here for 8 nights. Finally chance to relax abit!

We went snorkeling, we had an underwater camera and I need to get the pictures developed which I will post on here when I do. Now I know some people are all funny about people with CF going snorkeling because of the mucky water in the masks etc, but I don't really care. I already have psuedomonas and snorkeling is great fun and I like to have fun! The speedboat ride there and back was not so fun, an hour and a half each way on choppy water equals some very poorly looking people, me included. Two people were sick which does not help when you are feeling abit iffy yourself! What also does not help is sitting at the back of the boat where all the water splashes on your face and you get drenched, yep that would be Pete and I!!

Can people with CF please tell me what suncream they use as I had a major problem with suncream (I used Piz Buin) and I know it was me as it didn't happen to Pete. It kept mixing with my sweat and creating some kind of white paste which slide off me everytime I was sweating (which was most of the time) or in the pool, then I ended up with crusty salt/suncream layers of crap on me. Needless to say I do not look very attractive when I am on the beach or around the pool! I tried to wear less and got sunburnt as a result.

On the last day Pete and I got a traditional Thai massage, yes a proper one! (there are alot of 'massage places' with lots of scarcely dressed thai women outside, I don't think they do your regular type of massage...). It lasted an hour and they do your arms, legs, back, shoulders and head. It also consists of them cracking your toes and fingers, ouch! I had to tell them about my port and they just avoided the area. The massage cost 250 bahts each which is about £5! Bargain!

On the way home we checked in at Bangkok and they had no idea about my oxygen even though we had rung up to confirm a few days earlier. I had a letter with me so they looked at this and then arranged it, phew!

So like I said, since I got home I have felt rubbish, I am started to feel more back to normal now but still feeling sluggish and my chest feels terrible. Our wedding presents were delivered about an hour after we got home, we had got the dates mixed up, so instead of relaxing after travelling for 24 hours we had to unpack all the presents (as they took up the whole flat) and put them all away, then get rid of all the packaging. Our flat is so full now, but I keep getting all excited about using new things, like our new knives or our new towels etc. It's like Christmas!

Pete and I felt suicidal yesterday so went to Ikea to get a bookshelf/cabinet. We ended up getting a small table too. Trying to fit them in the car was fun, a woman even walked past and laughed at us (nosey cow) but we managed it. We have got rid of the desk in the hall way and replaced it with the bookshelf and the table, it took us all yesterday afternoon and evening to assemble the buggers. I have put everything on them today and it looks good, the bookcase has some glass doors and we bought some glass shelves too and we have made it kind of a drinks cabinet with books at the bottom.

Anyway I think this is maybe the longest blog in history and I need to take a miserable munchkin aka Alfie for a walk! So bye for now!

Repeat Prescriptions!

On Thursday I went my GPs to pick up my prescription, I had asked her to prescribe 2 months worth of medication because with the wedding and honeymoon its likely I might not have chance to go collect some more in 4 weeks. Does anyone else think its the most stupid system? You drop your request off then you can't pick up the prescription until 2 days later. This is because the woman who does them is not actually qualified to sign off prescriptions so she writes them all out and then a doctor has to sign them, hence the 2 days of doing something that the hospital doctor can do in about 30 seconds.

So I went to pick it up and she had missed some stuff off and prescribed me some stuff for 2 months and some stuff for one month. I'd even done my own note to her with everything neatly listed as I went through my medicine cupboard, I mean its not that hard is it? What is hard is going through it all and trying to recall from my memory every single medication I am on and if they are on this prescription she has handed to me.

So I told her (very politely may I add) that she had made some errors, she asked me to go through it and write down what I needed (ahem I already did this when I handed the nice neat note in 2 days ago) then said 'ok I will have it ready for you by next week'. WHAT?! My GP's is a 15 minute drive away, its not at the end of my road. Needless to say I had to leave before I did something I could have got arrested for.

Here's an idea..... instead of having this useless woman (who I'm sure just works on reception) writing my prescriptions, why don't I write them myself and then get the doctor to sign it myself? Would save myself alot of hassle!!!!!

Anyway I took the prescription I did have (with many items missing) to the chemist and informed them I would pick it up tomorrow (Friday) so I didn't have to wait around, plus they have to order half of the stuff in.

Friday morning I sent Pete to pick up the prescription, he came home empty handed. Apparently it wasn't ready yet, it would be ready in the afternoon. Well that's useful because I would be at a wedding then! So I had to ask my dad to go and collect it Saturday morning as we wouldn't be back by lunchtime when it closes.

Saturday afternoon and thank god my dad had remembered to go collect it as I'd run out of nearly everything. Still no sign on my tobi though!! So I haven't had any tobi since Thursday morning and it's now Monday. This is because the lovely tobi people will only let the chemist buy it directly from them so it takes forever to get hold of, plus the lovely GP will only write me a prescription for 28 days worth, even though most months have 30 days in them. It can take upto a week to get hold of tobi, so if you work this out I have to wait 2 days to get the tobi prescription from the GPs (if I'm lucky she will remember to put it on the prescription), then a week from the chemist then if I have 28 days worth I need to be arranging my next lot 19 days later! I tell you, you have to laugh otherwise you might just cry!

Back to Friday morning.... I woke up with a banging headache that I could not shift through any amount of painkillers which was disappointing since I had been looking forward to this wedding. I don't think I was much fun really throughout the day, abit quiet since talking doesn't exactly help a headache. It was a lovely day and all went smoothly although the bride was late and the groom was getting slightly worried! After the meal I had a sleep for about half an hour after taking a load more painkillers and then did my physio, realising I had brought everything apart from the chamber I need to do my dnase through my i-neb, doh! The sleep seemed to do the trick with regards to the headache, only took about 14 hours to shift lol. So then I was ready to party!!! Lets say I got bungalowed and Pete and I were the last ones standing of the night, I even got everyone up on the dancefloor as it was empty for about the first 3 hours. So anyway I think I made up for my quietness throughout the day.Oh here's a tip for you, if you are hungover in the morning and feel sick DO NOT do your acapella.....

Bride and Groom (Petes Uncle)

Abit drunk....

My future father-in-law and sister-in-laws!

Bad Girl

There are two things that I am getting really bad at which I am not very happy about.

First I am getting really bad at been ready on time, I'm talking about 10-15 minutes, nothing too bad, but thats not the point. I always used to be on time I don't know what is happening! I guess since I don't work alot anymore I don't have the pressure so have got out of habit. Also doing my physio on a morning (which I have only been doing since the end of last year) including my tobi neb means I always underestimate how long it takes me to get ready! It varies how long it takes me to do my physio on a morning as it depends how breathless I feel and how much I'm coughing up etc so it's difficult to plan. It can take between 20-40 minutes and thats before doing the neb which again can depend on how long I can breathe in for at a time on that particular day. Sometimes when I have to get up early I'm tired after doing my physio and feel like I need a rest, it can be hard work! I'm trying to improve on the been ready on time thing, I swear!

The second thing is my spelling and writing in general. I am getting lazy because I know my computer can correct it for me. Since I finished University I hardly ever write on paper anymore and when I do it's nothing challenging such as writing a to-do list or writing a cheque! Therefore I feel like I am losing my writing flair (if you can call it that) and my spelling it becoming atrocious (I had no idea how to spell that by the way!). I am also using abbreviations alot more and slang from going on the forums, facebook etc, I am not impressed with myself! I am constantly asking Pete how to spell things, I feel an idiot! Also I type so fast I put letters in the wrong order. I am going to try improve this but I'm not sure how. Pete suggested I start reading again as I used to read quite alot, if anyone has any suggestions of good books for me to read let me know as that is my problem, I do not know what to get when I go to the library. When I write my blogs I am also going to check them myself rather than do spell check so be ready for some bad spelling!

Here is a preview of my wig and stethoscope for on my hen night! I know what you're thinking, 'man she looks so cool...!' haha!

Stethoscope

It was outpatients today and I had a nice drive over there. When I got there the place was empty, seriously I was the only patient there! I was in and out in less than half an hour! First my weight was taken which was 56.10kg then my blood sugars which were 4.5. Then my blood pressure which I have no idea what it was and my sats which again I have no idea what they were.

Then the physio came to do my lung function tests, always the nerve wracking bit. My fvc was just under 3 litres, it had gone up by half a litre apparently. Sorry I don't know what this is in %'s as she didn't tell me, but I assume it is in the 60-70% range. My fev1 which is the important one was 46%, so it has gone up by 4%, yeay!! Still not good enough though! Remember my target is 60%! I provided the physio with a sputum sample which is no difficult task these days and then the dietitian came to see me. She is happy with everything, she asked me if I was still getting the low blood sugars and I told her it's not happening as much now.

I then saw the doctor, I was in for a treat as I got to see the 'big boss doctor' as I call him, I also saw him last time, lucky me! He had a new senior registrar with him (I think that's what he said he was anyway). He is abit scary sometimes, he also deals with pediatrics so I've seen him since a child so that's probably why he scares me! Plus he knows everything (he does loads of research etc) and you daren't say anything to him incase you look stupid!

He went through everything from all my blood test results (remember I had loads of bloods done when I finished my iv's) and explained it to me. I was abit overwhelmed by all the information but here is what I understood. All my different types of white blood cells are slightly elevated which indicates some infection, this is understandable because I have pseudomonas but they are higher than normal. My Ige level shows how sensitive I am to aspergillus (a fungus on my lungs), if this gets high it shows my body is reacting to it and it needs to be treated. Only to try reduce the sensitivity though and not get rid of the fungus as this is impossible. There is nothing they can do except treat me when I get the symptoms which is when I am put on the voriconazole, like I am now. All my vitamin levels are fine, my vitamin E is abit too high but he says that is ok. That's about all I can remember!

We then discussed my cough and he asked me if it is stopping me doing things. I told him it wasn't really apart from walking as I cough alot and its embarrassing but I can put up with it because I think it's just the cold weather. He asked about my sputum production and I told him I'm coughing up about 20mls with each physio session and some inbetween whenever I cough. He asked if this was normal for me and I said it is now but it didn't used to be, so then he queried if we were treating it as normal for me now and when did I start to go downhill. I replied I have no idea if it is been treated as normal for me! And I think I started to go downhill in my final year of university. So anyway I am staying on the voriconazole for a few more months and he says I should just have my tobi nebs all the time if I think they help me that much, I asked if I was allowed to do this and he said yes. Okey dokey then!

Had some more bloods taken and booked another outpatients appointment for end of May. Then the best part of my day arrives...... The nurse has given me a stethoscope for my hen night! I told her I was going to nick some stuff off the trolley for props and she said here have this and handed me a stethoscope, wahoo!! Its even red! I'm going to look so cool going around listening to people heartbeats, I've already tested it on Alfie and you will happy to know he has a beating heart.

Double Dating

Last night Pete and I went out on a double date with my friend and her boyfriend. I was rushing around to get ready and fit my physio in etc after working at the shop as we were meeting them at 6.30. However we got there in time even though I pointed out a parking space to Pete and he drove straight past it and ignored me! He thought he saw another space but it was taken by a micra hiding to try trick you, you know the type! So then we had to drive all around again because of the stupid one way system, luckily it was still empty. We went to the comedy club and then for a curry afterwards.

I felt such an pain because I couldn't walk all the way to the curry place even though it's only like a 10 minute walk, we walked to the car (about a 5 minute walk if that) and by the time we got there I was coughing loads and was breathless and my friend said the place was only down the road but it was about another 5 minute walk and I said I couldn't do it. It's embarrassing coughing so much infront of everyone out around town on a Saturday night and I was tipsy, and excessive coughing and too much alcohol is not a good combination, the result could be being sick in public, not great! So my friend and her boyfriend walked there and Pete drove us two there and then we spent ages trying to get a parking space close by. Like I said, I feel a pain for causing such a fuss. It was bad enough Pete offered to drive (so couldn't drink) so we didn't have to get the train or anything, I just couldn't face walking from the train station and waiting for one home etc. But then to make him do this, I just feel pathetic. He's so sweet offering to drive though so I could drink, he said it was my friend we were out with so I should be able to drink. I can't wait until the weather gets warmer and then hopefully I won't have all these problems! It's OK when I'm walking Alfie as I can get wrapped up, wear suitable footwear, walk at my own pace and it's warmer through the day. But on a night out I'm wearing heels, it's colder, I have a coat on but a dress on so my my legs get cold and people always walk fast!! Also the ground isn't very flat around town so you end up walking uphill sometimes.

I have outpatients tomorrow, I think my lung function will be better. I still don't feel 100% but the tobi nebulisers definitely seem to have helped with my cough, it's not as bad as it was but still there. I've been doing well at the gym, I managed 16 minutes on the treadmill which is the most I've ever done and also 26 lengths at the swimming pool which is the most I've ever done! So wish me luck for tomorrow!!

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!

I've got my eye on you!

I've added a counter onto my blog, it would be quite interesting to know how many people read it! It was my dad's suggestion over lunch today, so thanks daddy!

Yesterday I had to be rescued by my neighbours, I took Alfie for a walk and when we came back I decided to be smart and reverse into my space... I got stuck, my wheels were spinning and there was a smokey smell coming from them. One neighbour saw me when he was taking his rubbish out and another heard my car screeching, so they helped push the car. It's because it's all on a slope you see and there is no grit available, so it's very tricky! Anyway I was rather embarrassed and decided to not go to the gym as I couldn't face trying to get out!

Alfie doesn't walk very well in the snow. We went around a lake and one side was OK as the sun had been shining on it, but the other side was all slushy and muddy and Alfie got a wet tummy, legs and mane (yes my dog has a mane!). So he was shivering, had a little sad face on and was walking very slowly, so I ended up carrying him! I need to get him some kind of all in one suit, but sadly I cannot find one....!!

I have stopped my tobi nebs because I want this ringing in my ears to go and I looked on the internet (never 100% believe doctors!) and it said it can cause ringing in the ears, so I'm going to be safe rather than sorry! Plus I might go crazy if it carries on!

I finally did go to the gym today, I haven't been for nearly two weeks! (my dad got my car out of the space for me, it did it fine for him, typical!). The gym was hard work, I had to overdose on my ventolin inhaler and I coughed alot which doesn't make me look very cool! I can't have weeks off as then it feels like I'm starting from scratch again. Choice of music at the gym today, UB40 greatest hits! Yes I must be getting old...!!

Here's a video of Alfie playing with his kong, he has figured out that if he chucks it off things then the treats are more likely to come out, however on this occasion he was not very successful. Yes I know... my dog is a genius :o)

Snowy Birthday!

For my birthday I went over to see my brother in Hull with my mum, we were not going to let a little bit of snow stop us! I then had a chinese takeaway foe tea because the Indian takeaway was shut! We also had to get it delivered because the car got stuck!

For my birthday I got some clothes from my parents, a new camera from Pete, some pj's (Is it me or are getting new pj's the best thing ever?!), some socks for my ipod (to put it in, not to wear on the ipod's feet...!), money and some earrings. I also got a cake made for me by my Nana which was delivered by my Auntie and Nana.

Pete and I made a snowman last night which we named Reg, unfortunately his head fell off about an hour after we made him. RIP Reg!

I called the hospital today as I've had a ringing in my ear for about 5 days, it also echoes inside my ear when I talk! I called the hospital because tobramycin can affect your ears and make you go deaf so I got abit worried! I was on tobramycin when on my iv's and I've started my tobi nebuliser since I finished my iv's, which is also tobramycin but in a nebulised form. The doctor says the tobi nebs can't cause ear problems as not enough is absorbed and he says some people can get a ringing from tobramycin iv's, I have to call back if it gets worse or I start to feel dizzy. By the way, is it wrong to find one of the doctors quite cute? I'm not naming which one, I don't know who reads this!

I have felt pretty rubbish today, I keep feeling light headed which I think is my blood sugars getting low. Last week the hospital rang to check up on me as when they took my bloods my blood sugars came back as 2.8 which is low so they wanted to check I was OK. I'm going to take them everytime I feel lightheaded (I've got a monitor thingy to prick my finger with) and then tell the dietitian when I see her next. Usually if I have some chocolate I start to feel ok. People with cf can get cf related diabetes, I'm not sure how it is caused but it's different to normal diabetes, it's classed as type 3. We get tested every year with a glucose tolerance test. One of my tests once came back as abnormal but not abnormal enough to be diabetic, I was classed as having impaired glucose tolerance, kind of half way there. So basically my sugars can go abit funny sometimes, however another test 6 months later came back as normal, so I think I'm just weird! I've also been feeling incredibly tired and achy. Sometimes I get sick of feeling ill all the time, why can't I just feel good and have a normal day?! Am I just a wuss who picks up on everything that's wrong with me? I don't remember feeling like this when I was younger, I feel like an ill person, I never used to think I was ill, it's not a nice feeling. It's even worse to know your probably always going to feel like this, most people get ill and then recover, yes I have iv's and feel better, but I never recover properly.

Heres some pictures from my birthday, on my new camera! In the first picture I'm wearing my new coat

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