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!

Back from Sunny Greece!

Hey Everyone!

We are back from our holidays greeted by the best news ever, my friend Chantelle got her double lung transplant on Monday after only been on the list for about 8 weeks! This is how it should be for everyone and I’m so happy for her. She has a little boy and husband and I am so thrilled that once she recovers she can be the mum and wife she has longed to be. Please pray she recovers well and will be home in no time!

So yes we are back from our holidays and we had a great time!

We stayed on Pete’s parents boat, it’s a different one from last time we went, this one is bigger and abit more luxurious, hurrah! We sailed around the Ionian Islands in Greece. At first the weather wasn't too great, I was sea sick on the first day and vomited up a load of sputum into a bucket, nice! On Wednesday (I think) there was a storm including thunder and lightening and then the weather was great afterwards. One day dolphins swam by the side of the boat which was fantastic; sadly I didn't manage to get a picture!

I'm glad we only went for a week though as I find it a very tiring holiday, living on a boat is hard work and although I didn't actually help with much of the sailing what I did do, tired me out! When I say its hard work its just little things like flushing the toilet is hard as it’s a pump, and getting in and out of bed as the bed is really high up or going below and top of deck as you are constantly going up and down some steps. Then staying on top of my physio was hard work as my stuff was packed away everywhere (you cant leave thing loose on a boat as it goes everywhere when you sail if you do!) and the cabin was warm to do my physio in, plus my nebulisers took longer as they seemed to get clogged up even though I rinsed them with boiled water or bottled water.

So although it’s a fun holiday, it tires you out and after a week I ready to come home! It took a day and a half to get rid of my land sickness; this is where when you go on land you feel like the room is rocking because you are so used to being on a boat!

Just so people can get an idea of how much medication people with CF take, this is a photo of everything I had to take on holiday with me for one week. This photo doesn't include my food tablets though.

I had a problem at the airport for the first time ever with my medication. I always take all my medication in my hand luggage because if my suitcase got lost or delayed I'd be in trouble. Therefore I take all my nebuliser stuff in my bag which is liquid. I put them in a plastic bag like required, well two plastic bags as one wasn't enough and I wanted to keep them separate and the woman got funny with me saying they weren't labelled as medication and in future I needed to bring the labels for all my medication. I told her they came in big boxes and there wouldn't be room so she told me to cut the sticker off every box that the pharmacist sticks on. Have you heard anything so silly?! She then put them through a vapouriser I assume to check they weren't dangerous and insisted putting them all in one bag when I'd separated my tobi and pulmozyme from my nebusal as they needed to go back in the cool bag. As if I could keep all my medication in their original packaging, I'd need a bloody sack to carry it all! I have a letter from my doctor which she never even asked for, I know they have a job to do but its so frustrating when they are talking about something they don't know about.

If you remember I complained last year that I had some problems with suncream, well I tried banana boat and Hawaii tropic this time and they were lot better combined with my salty sweat so thanks for those suggestions!

Here is a video of photos we took. Warning! The song has ALOT of swearing in it, so if you are easily offended turn your sound down! I had to have this song though to accompany the video!

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!

Incy Wincy Spider

Well what a lovely weekend we have had! People always ask me if the warm weather affects my chest, in short the answer is no. I think the humidity is the factor that affects it, but to be honest unless I am forced to do some exercise, it doesn't seem to bother me. I can't comment on whats happening inside as when I went to Thailand my chest felt great, but I was coughing up blood at times, so that doesn't make sense!
What the heat does do is make me tired, I think it probably makes everyone tired. I can't compare my rate of tiredness to another persons, so I have no idea if I get more tired, its not a competition anyway.

What is annoying when I get warm, is the salt factor. People with CF have more salt in their sweat, it can dry as crystals, which is real fun around your hairline. Also it makes your hands taste all salty, although to be honest I don't think my salt factor has ever being that bad compared to others with CF. Anyway it can be annoying, it makes you feel dirty and well ...salty! We have to take tablets to replace the lost salt when its warm, otherwise we can feel lightheaded and get cramps, I find if it's been a warm day and I haven't taken any salt tablets, my legs ache that night and it feels like they need a really good stretch. I learnt this could be related to loss of salt by a post on the CF forum, amazing the things you can find out on there.

On Sunday we went to collect a sofa we had won on ebay for £67, what a bargain! It's to go in the kitchen, my dad was going to give us his sofa but it was far too big and we couldn't really afford a new sofa, so ebay was the answer!

The sofa was in Sheffield which is about a 30-40 minute drive away from us. My brother has a van for work and agreed to help us out, although he was hungover so Pete had to drive there which was an experience for him. This is how much Pete knows about vans, he asked me if it would have air conditioning... (erm no).

The house we went to was abit random. The door bell was at the side of the gate so I rang it and waited. I was just about to assume it wasn't working, when a big sheet of metal which I had assumed was an ugly fence, started rolling up to let us in. Wonder why they need so much security....?!



I gave the sofa a good clean when we got back and then I went around spraying all the weeds with weed killer. I spent an hour on Friday digging up massive weeds, it was like 10% of all the weeds in our garden. So a long way to go yet! Pete washed the car, we have an outside tap now so who knows, it might become a regular thing, I won't hold my breath though haha!!

I got attacked by a massive spider today. I was sorting out the washing and it literally jumped at me, which resulted in me screaming very loud and then trying to get away from it to get a glass whilst having a coughing fit. I put the glass on it then danced around for a while to calm my nerves before putting some card under and releasing it back into the garden. Stay away Mr Spider because next time you might not be so lucky, I may get the help of my friend Mr Dyson!

We have booked our train tickets for when we go to London in August and we have also booked tickets to go look around the Houses of Parliament. So excited! Can't wait for our trip!

That's about it folks, the excitement that is my life! Just got IV's to look forward to now, wayhay!

Henry VIII Weekend

Well I had a fantastic time in London. Highlights of it were seeing where Anne Boleyn and Catherine Howard's execution took place (Tower Green) and where they are buried along with others such as Lady Jane Grey so I could pay my respects. It was actually quite emotional since I'm a big fan of Anne Boleyns.

We saw original portraits of all Henry's wives, children, parents and himself of course. We saw letters written by Henry himself including the love letter to Anne Boleyn, letters by Anne Boleyn and her book of prayers, letters by Wolsey, the letter Thomas Cromwell wrote to Henry begging to save his life (which he didn't) and many more. I can't emphasise how much in awe I was, I was gutted I couldn't take pictures in the Library but knowing I was that close to these things was enough. I saw Henry's armour at the Tower which again I couldn't take pictures of, but I did manage to sneak one in!

Hampton Court was great too, the building is magnificent. You can't even begin to appreciate it when you see it on TV or in pictures. They had actors pretending to be Henry and Katheryn Parr (his last wife) which was good fun, I even got nervous when I had my picture taken with Katheryn!

Pete and I also had fun in the evening, we got abit merry in our travelodge room, which was a good job really as our room was situated right next to a train track!

I was so tired today, all that walking around and getting the tube etc (the tube is evil, so many steps!) plus the extremely warm weather has really run me down but it was worth it. I managed not to burn as I wore plenty of suncream, adding to the lovely stickiness of sweating and the crusty dried salt which covered me ......! (people with cf have more salt in their sweat).

I've put together a video of my trip, hope you enjoy it!



By the way I have a youtube channel now, I keep adding all kinds of stuff. Youtube is designed for people like me who like wasting time.... :o)

http://www.youtube.com/user/missisGG

I have returned.....!!

Well I am back after my many adventures around Greece and the Lake District! I would like to announce that hopefully around this time next year I will be a married woman, yes that is right I am engaged to my darling Pete! He popped the question when we went for a walk in the lakes up a hill overlooking Conniston Lake, all very romantic. The ring is too big though, apparently I have very small fingers and it is taking 2 weeks to get the right sized one! Abit gutted that I am engaged and noone can tell at the moment, or maybe they can from the big grin on my face... Its all wedding crazy now, we are going to the first church on tuesday and the other cant see us until september. Not sure which one we will get married at, I suppose the one that will do it haha! My cousin is my chief bridesmaid and also my wedding planner, she has been busy planning whilst I have been away, sometimes having a really organised, bossy cousin is a godsend! I haven't told her i'm home now, i'm still sat in bed and don't want to be dragged out quite yet...

I also have some rather sad news, poor murphy is getting castrated on wednesday, dont worry I have checked Alfie still has his bits upon my return as my dad kept joking he was going to get him done whilst we were away. So anyway, wish Murphy good luck, poor guy.

The good news is my headaches have gone, they continued for abit whilst in the lakes but I kept getting travel sickness so that may have contributed. The lakes was fun, Petes parents have a house there, its in the middle of nowhere surrounded by sheep. Once Alfie noticed this he wanted to chase after them all the time so had to be put on a lead all the time when outside. Alfie enjoyed the walks, at one point he thought it was funny to run away and make me chase after him up a hill which resulted in me nearly dying and Pete chasing him for about half a mile (the trouble is with Alfie, if he steps behind a leaf you cannot see him because he's so small!) Alfie also enjoyed the fact he was allowed in all the pubs (even though he's underage), we also went on a motor boat which was good although Alfie did not think so. It was really sunny the first day (when Pete proposed) and was quite rainy/grey the other 4 days but we still managed to do lots of things. Including play alot of scrabble, I won every game, oh no wait I didn't , Pete kicked my arse everytime. Here are some pictures from on the motorboat

Greece was also good, however we stayed on Petes dads sailing boat with Petes mum and dad, Petes sister and her friend, abit crowded. Plus I hate camping and this was like camping in a caravan on water, thats also an oven. Therefore although I enjoyed the holiday I did not so much enjoy the living arrangements. Luckily we got the front cabin which is abit bigger (I use the term big loosely), has its own bathroom and a fan. I hate sweating esp salty sweat as mine is because of my cf (we lose more salt in our sweat), I sweated constantly for a week, there was nowhere to go to cool down, it was warmer in the cabins than on deck. We had to use communal showers and toilets some of the time which where like saunas and I do not think were too good for my chest nor my hygiene (you start to sweat again before you have even dried yourself). I did my physio every morning like a good girl and towards the end was coughing up alot of sputum and my chest started to feel abit tight. The hot weather did mean I barley coughed though, as soon as I got off the plane in England I started coughing again, amazing ey?

Anyway accommodation aside and sweating aside we did do some good stuff. We swam in the sea off the side of the boat, hired cars, went to swimming pools, ate lots of nice food, saw amazing views, got to travel around to different places in the boat, I also got to read 3 books which was good because I dont seem to read that much anymore. I'm not complaining but the heat and lack of comfortable surroundings made it difficult and I was glad to be coming home towards the end. Heres some pics

Pete and I in the pool
Pete driving the boat
Nice picture in the sunset
Me doing what I do best, eating!!
In the sea, we found a mysterious shallow bit to stand on!

There were Italians everywhere, I was the palest person on the island. Why do I not tan? my arms and chest have browned a little, my legs are still transparent, I even bought some posh pitz buin tan intensifier suncream but it did not help! Anyway glad to be home, to see my little Alfie and to not sweat! haha! Anyway lots to do today, got to unpack, go shopping etc xx

Summertime!

Well, it has been so warm this weekend its been nice if not a little uncomfortable but I'm not complaining! If only I had a swimming pool I would be sorted! I have no salt tablets, the hospital are sending me a prescription for some but in the meantime I've been taking dehydration sachets so I don't feel ill. People with cf lose more salt when they sweat so we have to replace it else we feel ill, I tend to get lightheaded and have no energy. I think the heat has helped my chest though, my cough seems to have settled abit, when I did my physio yesterday I couldn't cough hardly anything up not even spit as my mouth was so dry! My i-neb has returned, oh how I missed the little guy!

On Friday I went for a walk with my friend and her niece who is nearly 2 years old, I was worried Alfie would not like her as he is abit unsure about kids (and strangers in general!). But he was really good, he kept looking at her and trying to sniff her feet so found her very interesting, the baby didn't really like Alfie so kept her distance but eventually she plucked up the courage to give him some treats with Alfie appreciated! We had some difficulty putting the pushchair down at the end and had to ring my friends sister haha!

I then went to the cinema with Pete in the evening to see Batman, Pete has been looking forward to seeing it for ages and I was pretty excited about seeing it too (and getting some more popcorn...). It was a good film, Heath Ledger played the Joker really well and Christian Bale is HOT!

Saturday I went to a house party! Wahoo! Got very drunk on sangria and a neighbour ended up shouting at me and my friend in a rather rude manner when I got back home for been too loud (I did not realise we were been too loud). It kind of put on a downer on the night as I don't like upsetting people and they already hate me cos of Alfie barking, I'm too scared to leave the flat now incase I see them.

Poor Alfie has not been coping well with this weather since he has a long fur coat, I had to give him a cold bath on Saturday, he just keep walking around and couldn't get comfy. Yesterday Pete and I took him for a walk and he just kept sitting in the shade! Chihuahuas are originally from Mexico, he should be able to cope with the heat!

So after my busy weekend i'm going to take it easy today. Bye! xx