Holiday Tips

When you have CF and you go on holiday, there is so much more to think about. I absolutely hate packing/planning for holidays because of this reason! Here are some hints and tips for holidays I have picked up over the years.....

Take all medication/physio stuff/nebs in your hand luggage, your suitcase might get lost! I have never been questioned about medication in my bag. They once looked at my I-neb as it looks abit like a bomb on the scanner and they once put my nebuliser stuff through a vapour machine as they are liquid, I was informed I should bring the pharmacy labels with me for the nebuliser stuff due to them being liquid but that was it.

I'm managing OK with my weight at the moment and I always eat loads on holiday anyway so I didn't bother taking any supplements with me. I think if I was on overnight feeds etc i'd probably just manage without them for week or take oral supplements instead, but even that would cause packing/weight problems

Remember to take a clear bag to put your liquids in for the airport checks

Make sure you get a letter from your CF team that says you are fit to fly with/without oxygen and a letter asking customs to let you through with your medication

I use a Frio bag to keep my tobi and pulmozyme nebs cool whilst travelling, I got mine off Amazon and I think its an extra large size. This won't be good enough for the whole holiday, you need to make sure your hotel room has a fridge! However it's OK for a 1-2 days travelling

If you need oxygen on your flight keep checking they know you need oxygen when you check in, when you get on the plane, because I'm telling you, these airlines seem to be useless!

Remember to take some washing up liquid to wash your nebs with after use! I have yet to write to Fairy and suggest they make a travel sized washing up liquid...! What I tend to do is try to not end up taking a full bottle of washing up liquid that will bump the weight of my suitcase up!

Unless your hotel room has a cooker or kettle I have yet to find a way to sterilise my nebs whilst on holiday. I don't really fancy taking a steriliser with me so I just make sure they have a good boil before we go away and as soon as we get back

Always take lots of your food enzymes, god forbid you should lose them or run out, talk about spoiling your holiday!

For travel insurance quotes call JD Travel  they have always managed to find me a reasonable-ish quote...!

I always try to remember to take a list of all the medication I am on, just in case I end up in hospital etc!

Unless you have a kettle to boil water and then let cool down, doing your nasal rinse can be a pain too. I used bottled water and just put up with cold water shooting up my sinuses! Not the best but when options are limited what can you do?!

To mix up my movicol I saved a water bottle and shock it up in the bottle, due to lack of spoons. 

Take spare movicols/sennas (or whatever you use for constipation), you don't want to get blocked up due to dehydration/travel. I had such bad problems with this on holiday and nearly ran out of supplies even with my spares!  Also, this goes without saying but drink lots of water, this will help with your chest and bowels

Remember to take salt tablets, you can get a prescription from your CF team. People with CF loose lots of salt when they sweat and it needs replacing, otherwise you can feel ill

Take an emergency supple of antibiotics/steroids in case your chest is naughty, I also like to take some spare ventolin and hypertonic saline nebs. 

Doing physio whilst travelling is a right pain in the arse. It's not exactly something you can do in public. On the way home I had to miss my evening physio session as we checked out of our room at 11am but didn't fly until 9pm, I did my tobi on the plane but not my hypertonic saline as I knew this would make me cough up sputum which I am not willing to do on a plane in front of strangers. I knew i'd have to miss my evening physio so did my pulmozyme in the morning an hour before my morning session (I usually do it in the evening), I don't like to do my pulmozyme without doing some physio afterwards as it loosens everything up but then you are not coughing it up!When we went to Thailand for out honeymoon I managed to do physio in a medical room at Dubai airport, that's the only way I can see getting around not missing it.

I don't go on two week holidays, not only is it too much to pack/plan medication wise, I don't like going away for that long! 10 days max for me! Last time we went for 2 weeks was our honeymoon and I didn't take enough disks for my I-neb!

Which leads to my last tip. if you have an I-neb, remember to take enough disks with you....!!!! And don't forget your I-neb charger!! Also make sure you will have enough disks when you get home, those disks can take forever to arrive in the post, trust me!

If anyone else has any more tips feel fee to leave them in the comments!

100 Followers!

My blog has hit a milestone, it has 100 followers! Thanks to everyone that reads it and I hope you find it interesting/useful/insightful. It means a lot that people follow me and my life and I hope I contribute something useful to the blogging world! Blogger has changed recently and has lots of new information, my blog 'the lonley disease' has been viewed 696 times, unbelievable! The record is the blog about my honeymoon though, that has had 948 views!

We went to the Lakes over the bank holiday weekend with some friends and I had such a good time but was absolutely shattered for over a week afterwards. We went on the Saturday and had a short walk around Coniston and then on the Sunday some more friends came up and we went for a longer walk from our book 'walks on the level' good old Norman and his walks for the crazy people who can't walk but still like to give it a try! I never realised I walk so slow compared to other people, seriously how do people walk that fast?! Alfie and I kept dropping behind, Alfie was praised for completing the walk, er hello what about me...?! Haha!

On the Sunday night we played a game that is charades and pictionary in one, it was so funny, our team won of course. We then played cards and I won again of course! By Monday I was so tired but we went on a boat on the lake, it was quite cold and wore about five layers of clothing to keep warm!

When Pete was packing the car to go home he managed to lock the car keys in the boot so we had to phone the RAC to come out and rescue us. We were lucky the guy managed to find us as the house is in the middle of nowhere and even when he arrived he said he might not be able to get in to the car! He made a gap in the back door and put a wire through the gap and wound the window down with the wire (luckily the back windows are not electric) and hurray he opened the door and we got our keys back! This meant we didn't get to set off home until about 9pm and I had to do my evening physio in the car in front of my friend and her boyfriend, not the highlight of the weekend. I apologised that I had only met my friends boyfriend once before and was now going to have to cough my guts up in front of him! It was rather embarrassing.

I struggled all weekend to do all my treatments to be honest, its so hard to fit it all in especially when you are tired and want to take that time to have a rest like everyone else! I also hate having to make everyone arrange things around my treatment like getting back by a certain time or having tea at a certain time so I can fit it all in. I also hate sitting in the bedroom doing my treatment and hearing everyone else in the main room having fun and chatting, it makes me so angry that I have to miss out and we are not talking 10 minutes here, we are talking an hour or more. I hate having to make everyone do the easy walk so I can do it or that I didn't do much cleaning or cooking to reserve my energy, I just feel like I'm a burden sometimes and expect everything to be about me, but in reality I'm doing all this so that I can join in. I don't know if I'd be able to go on trips anymore without Pete as he tends to watch out for me and knows what I can and can't do and picks up the slack for me, I don't think my friends would do stuff for me like he does. It makes me sad that I'm not as independent anymore.

Here are some pictures from the trip

Busy Weekend

I've had a busy few days so think I'm just going to relax today and take it easy, I might attempt to go food shopping and walk Alfie, but we'll see!

On Friday night we went for a curry with my dad and his partner and my brother and his girlfriend which was very nice and I also had a few glasses of wine.

Then on Saturday we went to a surrogacy social event, which involved doing a two hour walk. Not the greatest idea for me to agree to take part in, but needs must and all that! As we got closer in the car I kept commenting to Pete how hilly it looked and started to panic! I really don't need to be coughing my guts up for two hours in front if people I hardly know and when I'm trying to make a good impression! At the start of the walk there was an easy route and more difficult one and we were all to meet up about 15 minutes later, I do not think labelling it 'easy' was the correct term. There were two really steep bits so not easy (!) but I managed OK and then once we were on flat and going back downhill it was even better. I think I would have struggled if I wasn't feeling great, but since my chest is feeling good at the moment I managed. I slept well on Saturday night anyway and coughed some very thick sputum up in my physio session that night! I really had to push myself to do my physio, I hate doing it when I feel really tired, it's the last thing you want to be forcing yourself to do!

On Sunday we went to a barbecue at Pete's parents as it was his sisters birthday. The weather was beautiful and we had a good day just sitting in the garden. Here are some pictures

Pete's sister the birthday girl!

Pete's sister, baby due in 11 weeks :o)

I couldn't sleep at all on Sunday night and managed to get about an hours sleep, even though I was so tired. I hate it when I can't sleep but then I'm too tired to try and do anything else! I can't understand how your body can not fall asleep when it's so tired!

On Monday my mum and I went to this barber workshop that was supposed to be on 3D patterns but it was like a basic barbering course, we managed to sneak out before the end. We sat there for two hours and didn't even get a break or offered a drink and the chairs were so uncomfortable! Couldn't wait to get out!

In the afternoon I had a flight test as we are going on holiday in a month, wahoo! I just managed to pass the flight test. When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it , and collect some blood from it in a thin tube. They put the blood in this machine and it sucks it out of the tube it then gives some numbers about blood saturation levels and CO2 levels. They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 94% at the beginning and the lowest they dropped to were 88%. After 20 minutes they cut your ear again and take some more blood and take the same measurements in the machine, they then remove the oxygen until your stats have returned to normal.

I am still sitting on borderline, which means on short haul flights I'm OK and don't need oxygen, but anything longer than 5hours+ and I'm going to need oxygen as I could start to feel unwell such as feel very tired, sick and get headaches due to low levels of oxygen and even end up having a collapsed lung.

I then had an outpatients appointment but they had arranged to see me on the ward at St James since I was already there for the flight test. My lung function is 41% and my weight is 55.7kg. So overall I'm stable and although my lung function isn't the highest it can be, it's sitting at about my average so they are happy with me and I don't have to see them again for 6 weeks, fingers crossed! I also had my port flushed which went fine, got my letters to take with me on my holiday (one says I am fit to fly and one says I need to take my medication with me for medical purposes i.e I'm not a drug dealer!), got a prescription for salt tablets for my holiday and off I went very happy! I need extra salt when I sweat as people with CF lose alot of salt and can get ill if it's not replaced, so whenever I am in a warm environment I need to take salt tablets. I took some at the weekend too as it was quite warm then. If I don't take them I tend to feel very tired and my body aches, especially my legs!

Ps- Sorry about the massive gaps between paragraphs, blogger is a pain lately and I can't get it to leave smaller gaps!

Treatment Regime

I'm feeling better this week although I'm still having problems sleeping. I don't know what it is really but I'm having crazy dreams and waking up every 1-2 hours and every time I wake up I have to go to the toilet, that's just a thing with me, if I wake up, must make a visit to the bathroom. I don't know if I wake up because I need the toilet or its some compulsive thing I have! Anyway.... I'm still sweating but not because I'm warm and I can hear weird noises in my chest which isn't helped by the fact I have to use ear earplugs. I didn't wake up until 12 on Sunday and then it's been about 9.30 the other days, I have to be careful though because you can fall into a pattern of getting up late all the time and end up going to bed late, then before you know it your whole sleeping pattern is messed up!

I went to Yoga this Monday as usual and I didn't struggle as much this week, so maybe this is a sign my chest is slightly better? Or the class was easy, who knows! I really need to get back into swimming, I didn't go last week as I didn't feel up to it but I'm determined to go tomorrow, no excuses! If I don't go, tell me off!

I've altered my physio/neb regime as for the past few weeks it's hasn't been working for me. I usually do my saline before my evening physio, then my pulmozyme after, then tobi before I go to bed. However sometimes I don't do my physio until 9pm, then the pulmozyme is afterwards so say 9.30pm, which means then I can't do my tobi until after 10.30pm as there has to be at least an hours gap. Well we usually go to bed about 10-10.30pm so it was causing problems! Also if I do my physio too early in the evening I find my chest is full again by the time I go to bed, so doing it later is better.
So instead I am now doing my pulmozyme at about 6-7pm then my saline and physio an hour later or more later (you have to leave an hour after doing pulmozyme before you can do physio to let it work), then I can do my tobi straight after my physio. So now my physio regime is like this:

AM
(whatever time I get up) Saline then physio then tobi

PM
6-7pm Pulmozyme
8-9pm Saline then physio then tobi

I swear it is seriously starting to feel like a military regime, there is so much stuff to do and think about. The good thing about this new regime is that is gets everything out of the way if I'm going out somewhere, like on Saturday with my old regime I would have had to do my Tobi neb when I got in from my night out. But this way I got it all done before I went out as I did it at around 5-6pm, I don't know why I've never done it before really!

Ouchie

On Thursday my brother and I took the dogs for a walk, it was so warm! We considered throwing the dogs in the lake to cool them down but decided that would be nasty, since they both hate water. Loads of people were in the lake though, braver than me!

Here is my brother and the dogs in the car, note my car roof is down, my car is in it's element at the moment! Look at Alfie admiring my brother, I think it's love haha!

After the walk I developed a terrible headache, it eventually went with the help of two paracetamol and ibuprofen, just before I was due to meet my friends to go see the Sex and the City film. I really thought I was going to have to cancel. However like I say, it went just in time but meant I hadn't done my physio. The film was really good, I didn't like the first film as it was nothing like the series, however I think this film has gone back to its roots, not totally, however more than the first film which I hated. Towards the end of the film my headache started to return and by the time I got home I was in pain again, I tried to do my physio but only managed half then went to bed.

Friday morning my headache had thankfully gone, I went to the hospital to have my needle put back in and start on colomycin. Then in the afternoon I did some gardening, I pulled up some weeds and planted some seeds, not sure if they will do anything but here is hoping! I then got another banging headache! It went after about 2 hours and another dose of pain killers, thankfully!

So far I feel OK on the colomycin, colomycin always makes my face feel funny, like my muscles are all relaxed. You know when you go to the dentist and they numb one side of your face? My face feels abit like that! It's also affecting my coordination which was interesting yesterday when I was at the shop cutting hair, lets says I had to concentrate alot! I'm making sure I drink loads of the energy drinks and I had a re hydration sachet yesterday. So, so far so good. I am going back to hospital on Monday to start on the ceftaz. I feel like I live there at the moment!!

This morning I woke up with the worst pain in my chest I ever remembering having. It was in my left side and when I breathed in it felt like I was getting stabbed just under my boob. The deeper breath I took, the more the pain spread. I tried laying on my back and it was hurting so much I started to cry, I didn't want to breathe but obviously a person has to breathe! I sat up and Pete got me some co-codamol and then I needed to cough but I didn't want to because I knew I would need to take a deep breath! Anyway I didn't have a choice and once I started I couldn't stop, my god it was painful! But afterwards the pain felt alot better, it's still there but hardly hurts now. Must have been some mucus that needed moving! Ouchies!

I'm Fat!!

We went to the GP's on Thursday, our appointment was at 9pm!! The GP didn't recognise me at first and was looking at me wondering what the heck I was going on about until I mentioned CF then it clicked. He said my hair is different and my surname has changed so I didn't realise it was me!

He was fine then and really helpful. He is going to test us first to check we are both fertile and then he will refer us to the IVF clinic. I need to have my blood taken in two weeks to see if I am ovulating.

We left feeling quite positive and I've been feeling alot happier since.

I'm having a body crisis. I feel fat! I know I'm not but since I put abit of weight back on, it seems to have all gone to my belly and I wore this tight dress on Saturday and on loads of the pictures my belly is sticking out. It doesn't help that for some reason I felt bloated that night. In the first picture I look OK...

Then I got someone to hold my stomach in for this photo, hence the weird face....

Then, oh my god! I look like I'm going to explode!!

Also I think Pete is having an affair, what do you think?

I had a good night, regardless of carrying what appears a football under my dress. Although I was a little disappointed I kept getting out of breath when dancing and having to sit down to recover.

Last night I was so tired after Saturday night, I seriously did not want to do my physio. I probably shouldn't have insisted we go to the cinema during the day and had a kip instead, but nevermind, we saw Wolfman incase you're interested. I fell asleep and Pete woke me up at half 9 to do my physio as I'd done my pulmozyme at half 8 so needed to wait an hour. I was so horrible, I refused to do it like a little child and threw my stuff on the floor. Eventually I agreed to do it after Pete telling me I'd been bragging I was so compliant with my treatment and wasn't following my own advice! Damn it! I did my tobi neb too, with the most miserable face ever. I also did my tablets and everything else I must do before bed, it's like a military operation! So theres a compliance tip for you, if you are too tired, get your husband to force you to do your physio!

I had outpatients today, my lung function is 43% wahoo! I tried a different strategy recommended to me by someone who reads this blog. He told me to try not breathe out as fast as then your airways close up, obviously you have to breathe out fast but I tried to do it in a more relaxed manner if that makes sense! So either the advice worked or my lung function is actually better. I do feel better in myself but not sure if my chest does. It's so hard to know what feeling good and bad are anymore, they seem to to just be one thing. I wonder, am I actually feeling better or am I just coping with it better? How can you tell?!

Pete and I have booked to go to London in August to see the plays about Anne Boleyn and Henry VIII at the Globe, they were my birthday present. We are trying to decide what else to do when we go. We did Hampton Court, the British Library and the Tower last year. I'm thinking maybe the Dungeons or the Sealife Centre or Windsor Castle, or a combination. Any ideas? I want to go to Hever Castle as some point but I don't think we can go on our trip to London.

Murder by Yoga

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

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

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

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

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

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

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!

Gutwack

I started the Voriconazole on Tuesday morning and then Tuesday night I didn't feel too good. It was weird really, I got the usual blurred vision in the morning about an hour after taking it, this tends to last about 20-30 minutes, it kind of makes me feel abit spaced out and I find myself just looking at the wall intensely!

So Tuesday afternoon my stomach starts to feel abit strange and I thought I had drunk too much coffee! It got worse and so felt like I had forgotten to take some tablets with my food, however I knew I had not. I now have a technical term for this feeling (when you forget to take your food tablets), someone on facebook said it, so from now on it shall be called 'gutwack!'. I felt really sick by the evening and my stomach was twisting, turning and bloated, I also felt lightheaded and nearly fell over when I stood up on a few occasions.
In addition to this when I did my evening physio I coughed up absolutely loads of gunk, thick lumpy stuff, it was never ending! Very strange indeed!
I felt fine the next day so I have put it down to the voriconazole hitting my system and working its magic!

Yesterday I had my hair done as Pete and I are going to his Uncles wedding tomorrow. I'm looking forward to it as I feel like I've not done much since my hen night, plus I can't wait to wear my new outfit!

Apparently Alfie spent all Tuesday barking at a statue in my nana's garden haha! The past two nights Pete has put Alfie's basket on the sofa and Alfie has sat in it watching TV like it's his throne, to add to this Pete has been spoon feeding him yogurt whilst he chills in the basket. Pete pretends he's not soft when it comes to Alfie but behind closed doors it's a different story! Alfie gets treated like royalty! I'm getting sick of Alfie barking at the TV everytime an animal is on the screen, he even barks at the directline advert as its a phone on wheels moving around. He doesn't like the meercat.com advert and don't get me started on the blue cross advert with poor Barney. I know its funny but also annoying at times! lol! We are considering squirting him with water if we tell him 'no' and he continues to bark, DVD will probably end up blowing up though from getting wet!

Flight Test part 2

Well I received a nice letter this morning informing me I needed to call the doctor as my flight test was borderline. My oxygen level in the blood sample fell from 9.5 to 7.1, a value of less than 6.6 means you definitely need oxygen and between 6.6 and 7.4 means borderline. He said it would depend on if my flight was long haul or short haul to whether I would need oxygen.
Since I am going to Thailand I wasn't holding much hope!
So it turns out the lady lied at the flight test, she said I'd be fine. Peh!

I have contacted Emirates and oxygen is free (I checked this before we booked just incase), they have sent me a form to fill in which I have to send back a month before we fly. The form looks abit complicated! There is a part the doctor has to fill in so I'll take it to outpatients next week.

I guess there are positives and negatives to needing oxygen:
+We will get to sit at the front so have extra legroon
+I will get my own air supply so less likely to breathe in any bugs etc in the air
+I will feel more refreshed and less tired at the end of the flight
+The air attendants might be extra nice to me
-I wont exactly look sexy at the start of our honeymoon
-I have never needed oxygen before in my whole life so have no idea how anything works
-Its an extra worry when checking in etc

I have felt abit groggy these past few days. On Tuesday morning I felt randomly sick and thought I might pass out, I laid down for half and hour and it went away. How random!
Then yesterday I developed a headache which seems to have carried on into today, not very impressed!
The physio three times a day hasn't really worked out, my sputum also seemed to get better so I didn't bother trying to pursue it. However it now seems to be all thick again, oh joy!

The front tyres on my car seem to be going bald so I took the car to Kwik Fit yesterday, they have ordered me in some new ones and are going to call me when they get them in. On motability you get 2 free tyre replacements and you have to take the car to Kwik Fit to get them replaced. I always get nervous going as I think they are going to think I'm an idiot, but i think I sounded like I knew what I was talking about yesterday. The guy seemed to take me seriously anyway!

I am Invincible

Poor Vicky is still in hospital, I'm not going to go into all the details but things are really tough for her. It just seems to be one thing after another, she has been in there over 6 months now. Poor little lady, thinking of you Vicky!

Call me selfish but when these bad things happen to others with CF it makes you think about your own CF. I don't like to think of myself as having CF, I know I have it and jeez I'm reminded everyday from all the treatments and feeling like rubbish but I see that as just been me and not really fitting into a category. For me, not doing these things would be great but also abit weird!

When terrible things happen to others with CF it kind of doesn't sink in that this could happen to me, somehow I see myself as different. I don't see myself as special or better, I don't think it's denial as I don't deny I have CF and I know it's going to happen to me at some point, although I hope it's no time soon.

A girl called Laura from the CF forums passed away the other day, I didn't even know she was that ill. Is that because she didn't know herself? Was she like me and though it would work out? I'm always quite positive and think I'd push through if my health went downhill. Although I am an ill person I don't actually see myself as ill, I see myself as me with a few (well alot) of extra needs and problems :o)

I don't feel scared or worried, I feel like everything will be OK for me. How can I feel like this when people I know pass away and are poorly? I think I would be scared if one of my very close CF friends passed away as I think they see things like I do, think they are invincible. But thinking that doesn't mean that you are, and that might hit me if one of them left me.

Sometimes my attitude scares me, people keep saying maybe I shouldn't get pregnant as it could seriously make me ill or even kill me, even the doctor has warned me. However these comments seem to go unnoticed in my mind and I think to myself, I'll be OK, it will be worth it. Don't worry I'm not trying to get pregnant at this moment in time, don't want my mother ringing me up! Come on people I shall do it properly and be married first!! haha.

So to conclude, I think I am invincible, I will be OK. This is how I go about my daily business without crumpling into a ball and crying. When I do die I shall remind myself of this blog entry and it will make me laugh!!!


I have started attempting to do my physio three times a day, this is easier said than done! I am coughing up so much sputum and its really sticky and thick, I feel so full of the stuff its the only option I can think of. But like I say easier said than done, it's hard to fit it in if you have things planned and it's hard to force yourself to do it because as you can imagine it is not the most enjoyable of activities I can do on a daily basis!!

I went swimming on Monday night, first time in three weeks. Yes yes I know I am naughty! Pete has now joined the gym too and he was watching me as the treadmills over look the swimming pool. Therefore I had to look cool and like I knew what I was doing, this must have brought out a competitive streak in me and I was racing other swimmers. Yes you read that correctly. Needless to say my legs felt like jelly by the end, I still managed 30 lengths though so I was pretty impressed. I did manage to leave my swimming cap there so I'll have to buy a new one as I assume someone will have nicked it, goodbye rainbow coloured swimming cap! I'll miss you!

As well as discovering I can swim faster than about 2 other people (haha) I have discovered I can still run, but only for about 5 seconds before collapsing. The dogs on their walk decided to run to the car in the carpark across the field so I panicked as it is close to the road and legged it after them. I suspected that they may have seen another dog which is code red situation with a road close by! They are evil dogs that want to kill me, however when I got there they were both sat by the car waiting to get in. Evil for making me run.... but good and clever doggies for sitting by the car :o)

Trip Down South!

Over the bank holiday weekend Pete and I went to see our friends who live in Cambridge. They are a couple that we made friends with at uni, they both lived with Pete and it's because of the girl that Pete and I got together as she was on my course so it's how I met Pete. Unfortunately they moved back down south after finishing university in 2007 which means its hard to see them regularly. They came to see us in 2008 for my birthday so it had been over a year since we had seen them. So I had the usual worries of would they have changed? Would we find enough to talk about etc? But it was fine and we got on just like before, except we are now more mature of course ;o)

They live in a place that is kind of in the middle of nowhere but we went into Cambridge and did some punting of course. How can you go to Cambridge and not go punting??!! I did not actually have a go, Pete said I am uncoordinated and would fall in the water, which I did not fancy at all so I decided to relax on the boat and went through three toffee crisps in the space of 45 minutes, I didn't even feel guilty about it :o)

We found the punting fun, bashing into walls and other boats, getting stuck in trees, that kind of thing. It would seem however that punting is serious business and other people were not impressed with our antics and chose not to join in our fun, infact one guy insisted in giving Pete a lesson, we were like 'erm we don't care!'. We were so slow people went past us like three times, nevermind! Guess some people don't like to have fun, we must not be as mature as I think.....

We went out in the evening but I was so tired that after a large meal I was struggling to keep m eyes open. I've been feeling tired all week, not helped by the fact Alfie has decided he is going to sit by our bedroom door all night whining and scratching at the door. Last night we had to put him in the kitchen to get a decent nights sleep, I will not give in and let him on the bed because then he will be getting his own way!

So we had the meal and went to a bar and it was about half 11 so we decided to call it a night as we were all tired, I told you we are getting old!

The next day we went bowling, I am rubbish as bowling and came last. I don't like playing it as I get mad at my uselessness!! We then went to see Wolverine at the cinema. The cineworld in Cambridge has much better seats than the one near us, I'm jealous! I ate a large popcorn (Pete stopped after a while) and I could have eaten more, I have no idea what is wrong with me, I am eating LOADS at the moment.

I was tired yet again and slept in the car on the way home, I always sleep in cars anyway. I must find it soothing or something because as soon as I'm in a car I want to go to sleep, it's the same on planes, I can't stay awake!

I did all my physio etc whilst visiting our friends, I did it in the spare room rather than subject them to watching me cough my guts up. It's obvious they could still hear me though and it's kind of embarrassing, especially in the morning when everyone was waiting around for me. I also did my physio in the car on the way home, I don't know what people must have thought driving past. Maybe they thought my acapella was a bong or something haha.

I have been thinking about what I'm going to do when we go on our honeymoon, it's likely we will be travelling for about 24 hours in total and I really don't want to miss physio, nebs etc as I will already feel pretty grotty after such a long journey without having missed my physio. I don't think nebs will be a problem (although washing the stuff might be) however I don't really fancy doing my physio on a plane, coughing up mucus is gross and loud and everyone will look at me and think I'm disgusting. I thought maybe in the airports they might have a medical room where I could do my physio, but I don't really know how I could look into that.

I've finally talked Pete into watching Twilight, I don't think he was very impressed but then he was looking at it on the internet afterwards so maybe he was...... I've finished the Eclipse book and I'm on the third section in the final book Breaking Dawn, it's so good I can't put it down. I feel like it's a crime to stop reading it, infact are lucky I am breaking myself away from it to write this blog!!

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!

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

Have you seen my appetite anywhere? I seem to have lost it!

I officially hate IV's!! My body is so tired I can't even be bothered to move most of the time, my sputum tastes yacky, I feel slightly sick and my appetite has gone bye bye. I am still eating stuff for the sake of it but I am not getting any enjoyment from it, I'm scared if I eat stuff that I like whilst I feel like this then I will stop liking it. I did go out for tea on Friday to some Mexican place and I ate all that, I'm OK with some foods, it's hard to explain! All I know is I'm not eating as much as I usually do and I have no desire to even get up and get anything, this is very strange for me! Pete made me a salmon, pasta, cheesy dish last night and it was really nice but I only ate about half of it! What's wrong with me?!!!

I am also getting headaches, this means I don't want to cough so I have sputum bubbling in my chest and throat. I had to do my physio with my pep mask last night as I couldn't face using my acapella as it wobbles your head about, so I got Pete to pat me and used the pep mask. But I didn't manage to do a whole session as my headache which wasn't too bad at the start just got worse and worse and I started crying because it hurt so much to cough. I think I'm going to take pain killers regularly to try stop it getting so bad again.

Making the meropenem up isn't too bad, I've got it to a fine art now and it's only taking me about 15 minutes to make it all up and administer them, which is quicker than when you have them in the ready made eclipses.

The nurse from Calea (Calea are the company that make up my drugs and deliver them) came to see me on Friday to do my tob levels, she comes to your house which makes life so much easier! When you are on tobramycin you have to have your blood levels checked after your first dose as if the dose it too high it can make you have hearing problems (I think). They can't take the levels from your port needle as there could be bits of tobramycin still in the line and then the readings would be wrong so they have to take blood out of your normal veins. I have one special vein for this that hardly ever lets me down and the Calea nurse is really good at taking blood.

My voriconazole ran out on Wednesday night and that's my 3 months up, I can't have it constantly because of the side effects and also I think because it's too expensive, although they don't say this to me! Hopefully my aspergillus and sceposporium (fungus' on my lungs) will behave themselves for a while now the voriconazole has kicked them into place!

I'm going to the cinema later hopefully, I think a big bag of popcorn is in order and I do not think I will have any problems eating it!

New Years Eve

Happy New Year Everyone!

I had a good time last night, two of Pete's friends came over and my cousin and her boyfriend came around. We stayed at mine for an or so where I got to play my ipod with all my cheesy tunes on, trust me there is nsync on there and everything!! We then went the the pubs in my local town and met up with some of my friends, I also bumped into my brother and both his exes (who he was out with...? don't ask!!) who are both lovely. Pete and his mates wanted to go to another pub at about 1am to meet my brother but we were at a pub that is practically next to our flat and it would have involved me walking to the other side of town (about 10 -15 minutes in heels) and then walking back, and I couldn't face it with the freezing temperatures making me cough, I did have a coat on don't worry! So Pete walked me home and then they went to the the other pub. I tidied up abit whilst drunk, quite an achievement I think and then went to sleep. Only to be woken up at about 3am by Pete holding the house phone saying my friend is on the phone, I told him to tell her I was asleep. But no she was crying and I had to speak to her. Great.....! So anyway I sorted her out the best I could: she was drunk, I was drunk and half asleep, if was not a productive conversation....

Pete then came to bed and I woke up about an hour later and could feel something hairy under the covers in the bed. It was Alfie! Pete said he was whinging so let him stay in the bed with us, it was well funny because we woke up later and we couldn't find Alfie anywhere. I thought Pete must be laid on him! Then we realised he was on Pete's pillow right infront of Pete's face fast asleep!!! Bless Alf, he can fit anywhere to have a good sleep!

I've been good and done my physio, had to do it in the bedroom though because didn't want to do it infront of Pete's friends! I have realised that when I blow into my acapella all the digits on my alarm clock wobble around, it must be because it makes my eyeballs vibrate or something! At first I thought it was quite funny but then it started to freak me out abit!

So anyway what is 2009 going to bring me? Well i'm going to continue going to the gym and doing my physio twice a day and get my lung function up to 60%! I'm going to become a married woman and who knows what else! Happy New Years everyone xx

My fabulous new purple shoes!!