Everything is OK in this neck of the woods

Oh my gosh, how is it July and I haven't done a blog post since April...! Apologies!

I must say that insulin and Azli (Cayston) seem to agree with me, I think I am the healthiest I have been in a long time! My lung function at clinic last week was 44% and my weight 56.5kg (yes i'm getting fat!) and I'm on my month off Azli!

I've dropped the insulin at lunchtime on advice of the Doctor as I was having quite a lot of hypos (low blood sugar) even with just one unit of insulin as lunchtime. I monitored my blood sugars last week and was getting some high readings after some lunchtime meals but not others so the CF team are going to decide whether they want me to start having insulin at lunch again or not.

Our second round of IVF surrogacy did not work which was heartbreaking as we really thought it would this time as things went so well leading up to it. The good news is we have six frozen embryos so are due to do a frozen embryo transfer in the upcoming weeks.

I have ordered my new mobility car as believe it or not it's nearly three years since I got my Astra, so also three years since I gave back the love of my life, the Yellow Peril Mini! The good news is I will soon be the proud driver of another Mini! That's right folks I'm getting another one, but a Mini Cooper Countryman this time. She is going to be beautiful! Dark red with a black roof and black tyres, I can't wait to go cruising in her. We are even discussing the possibility of a road trip to France next year in her! I can't decide on her name, either Rollin Roz or Ruby Roz, I guess it's a case of deciding when I see her in the flesh! 

In other good news... I was awarded ESA! The relief is amazing, to know I don't have to worry about been forced to work or go through a medical which I've heard are horrible. I had some problems receiving the new payments which I had to get Mummy to sort out as the people on the phone are horrible, but that's nothing compared to what could have happened. 

Alfie has a new friend called Jasper, he is about 16 weeks old and half Jack Russell and half Chihuahua. he is my brothers puppy and we had to get the dog trainer out to show us how to introduce Jasper to Alfie as Alfie does not like dogs apart from his buddy Murphy. They are getting on OKish now but it's taken a lot of time and energy. Jasper is a mental dog, he never stops moving, he never seems to sleep, he digs, chews and eats everything and he likes to wind Alfie up by runnning around him and sometimes even biting his tail. Alfie being a more mature dog these days (he is now 6!) is not impressed as he just wants to lie back and relax whereas Jasper wants to play. Therefore these differences cause Alfie to tell Jasper off quite often and also me tell Jasper off quite often as he always seems to be running off with something of mine like a shoe or a charger, if you leave anything on the floor he will have it and he is fast! The joys of puppies! Here is a photo of the troublesome trio, from the left: Murphy, Alfie, Jasper - good boys sitting for treats!

Here are a few pictures from the past few weeks

First night out in months as actually felt well enough!

Trip to Bridlington (weather was horrible!)

Trip to the Lakes after failed surrogacy attempt to cheer ourselves up! (weather was beautiful!)

 One problem with Azli... you have to do it three times a day so end up doing it in very random locations!

We were followed by a herd of young cows, it was quite scary! Like the Cravendale advert!

I must admit, things are hard for me at the moment with our second surrogacy attempt failing. I might be doing well CF wise but psychologically I'm struggling, however I'll save that for my surrogacy blog! I do know something though, that after everything we have gone through this year I know I love Pete with all my heart and know we can get through anything together! I am so grateful everyday I have such an amazing person in my life! Hope everyone is well, I will try update again before three months has passed!

Naughty Blogger!

Oh dear naughty blogger! *smacks hand*

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

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

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

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

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

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

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

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

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

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

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

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

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!

Italia

Well hello there! Or should I say Ciao! That's right, I am back from Italia!

We had a fantastic time, we stayed in Sorrento which is close to Naples. Its a beautiful place and we would go back again. Even the people are beautiful, I hate them haha! There are lemon and orange trees everywhere, they make a nice alcoholic drink called Lemoncello with the lemons and that's coming from someone not a fan of lemons!

My CF has being very kind to me lately, before our holiday I was going to the gym 2-3 times a week and walking Alfie almost daily and whilst on holiday I have felt good too. My chest always feels better on holiday anyway as I think the heat dries it up so I cough less but it means once I get home there is alot of think mucus to come up! I had an outpatients appointment today and my fev1 is 42% and my weight is 54.5kg, I'm surprised I'm not about 60kg with the food I ate on holiday! I must admit I did get sick of pasta and pizza though and will be eating other types of food for awhile! So I got a thumbs up from the doctor, yeay! I also had a ultrasound this morning to look at my liver, its standard I have a scan every 2 years. I had to fast from last night and the scan took about 20 minutes.

I wasn't very impressed with Thomson with regards to my oxygen, they got really funny about my letter saying I had changed the date on it (which I had to save time and effort, I didn't realise it would be a big deal!), so I had to get another letter signed by my doctor which isn't exactly easy, Pete had to do it by fax at work to get it in time. They then didn't send me anything to confirm the oxygen was arranged so I had to call them, they claim to have emailed me.... When we checked in we couldn't be sat next to each other, we had the aisle between us, turns out needing oxygen gets you no extras or special treatment! When I got on the plane I checked they were aware I needed oxygen and they told me they had been told I 'might' need oxygen! So I got dumped with this stupid tank that required a white mask with a bag on the bottom of it, not the nasal cannula I had been promised when I spoke to the extra needs department! I had to sit straight else the bag kinked and got cut off, I felt like I couldn't breathe with the stupid bag and of course I looked an idiot! Luckily the seats behind me were free so Pete and I were moved to them so my tank could have its own seat, which begs the question why we were not seated there in the first place?!

Anyway I complained to the rep when we arrived and she made sure they knew I needed oxygen for the whole flight on the way home and would like a nasal cannula which thankfully they arranged! Again we had an aisle between us, the seat next to me was free for my tank which was lucky as it's not nice having the tank by your feet. This tank only gave you oxygen when you breathed in through your nose which was slightly annoying but alot better than the mask!

I was really tired in the airport on the way home, how much walking do you have to do in airports?! I'm seriously considering asking for a wheelchair next time so Pete can wheel me around!

We went to look around Herculaneum and Pompeii (both destroyed by Vesuvius in 79AD) the Sunday before we came home which was amazing, you can't believe the house you are stood in or the mosaics you are looking at are nearly 2,000 years old. Pompeii is massive, it was home to 20,000 Romans so we only got to see a small section of it really. I struggled walking around with the heat, dust and uneven floors but it was worth it!

We also hired a car for the day and drove on the Amalfi Coast, we got upgraded to a convertible Fiat for free which was good! Those roads are so scary, Italians are crazy drivers and the roads are narrow and bendy! It's a great drive though and very beautiful.

We spent the rest of the time relaxing by the pool, I of course sit in the shade. The heat makes me feel unwell and I'm very pale which people like to point out to me and make fun of all the time. Yes I don't tan, yes I am pale but I have accepted it, it's how I was born and I am not ashamed of it. I don't know why people have a problem with paleness, everyone is obsessed with getting a tan. I am pale and proud!

I've made a video of photos from the holiday as there are so many, the song is 'Torna a Surriento' (Come back to Sorrento), what other song could I have had?!

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

End of IVs

This two week course of IVs has been one of the most nicest (if that's possible) courses of IVs I've had in a long time. I have had few side effects and I actually feel like the IVs have worked for a change! I even went clothes shopping on Monday which I never do as it tires me out and makes me feel light headed, I got a new pair of jeans with my birthday gift voucher, a top (a Primark special for £4 haha!) and some birthday presents for my friends. I had to get size 8 jeans which was slightly strange as I don't think I have ever fitted into size 8 jeans, but the 10's were far too big and jeans always go baggy, all my size 10's I have are like that now and I'd like a pair that are actually tight on me, even my skinny jeans fresh from being washed hang off me at the moment.

The first week of my IVs I felt very tired and had afternoon naps, I also had a fair few headaches but this improved in the second week. I will definitely be asking for IV Aztreonam again as it's much more friendly than Ceftaz or Mero!

Today I ended my IVs and when it came to taking my needle out my needle was in my arm in a very awkward position, not how it entered my arm last week! I recall trying to reach something in my car the other day which involved twisting my arm around, never the best idea when there is a needle in the top of your arm. There was a popping sound and shot of pain through my port but it flushed fine so I didn't do anything about it, anyway this must have been when the needle repositioned. My arm looks in good condition, there are no sores, just flaky skin and it's slightly red, a massive improvement to how it used to react, so I think we have my allergies etc figured out now!

My weight is up to 54.1 kg which is good news and then I did my lung function test. The physio looked at the numbers and a big grin came on his face, he told me it was good and asked me what I thought it was. I guessed 46%, then he told me it was 50%!!!!!! I can't believe it, I nearly cried on the way home because I was so happy. I'm so relieved as I have being worried about my health over the past few months and doubts have crept in to my head about where it was going. I've wondered if Pete and I are doing the right thing trying to have a family when I have struggled especially with my weight as my weight is always stable so to lose this safety net was a big worry for me. I didn't discuss these feelings with anyone apart from Pete as I know people already have doubts about our plans, I feel like every time I have a rough patch people are judging how we will cope and I even judge myself and wonder if I am selfish.

Before and over Christmas when I was struggling to even bathe on my own or walk to the bathroom I decided to myself that if I didn't improve we would have to cancel our surrogacy plans, I really thought this could be the start of a totally different direction to the future I had planned. When you come out of the other side it's easy to think you were being dramatic and it was just a rough patch, but when it's actually happening you have no idea what the future holds. I'm not saying I thought I was dying, but I thought I might not regain my lung function and the damage could be permanent. So I am so happy that things are back on track and to get an fev1 of 50% is just amazing and illustrates how stable my health is overall.

Pete and I have booked a holiday to Italy! I am so excited! We are going to Sorrento for 10 days and I can't wait! It was quite difficult finding a suitable hotel within our price range as we needed something central as if I have to walk to and from the hotel it will just tire me and ruin the holiday especially since the area is very hilly and also I needed a room with a fridge for my medications. However we found somewhere eventually, I now need to have a flight test done and sort out some travel insurance. We are booked with Thompsons and they provide free oxygen on flights so if I do need oxygen it's not as big a problem and I have been quoted around £130 for insurance for Pete and I with a £350 excess. I was expecting it to be a lot higher due to my hospital stay so quite relieved I can still get covered for a reasonable'ish' price. I got this quote from Jd Travel , I've used them for years. However a few people with CF have recommended Insurance With so I'm going to give them a try as well.

Wonderland

On Saturday it was Pete's birthday, he is now the same age as me again. I don't like that few months gap where I am older than him! I'd already bought Pete some clothes for our holiday back in May as part of his birthday present so he wasn't expecting anything from me, however I got him some surprise tickets to go see Jack Whitehall (a comedian) in November so think he was pleased!

On Saturday night we went to someone else's birthday party, it was fancy dress, Alice in Wonderland theme or wear a funny hat. I went as Alice as Tori lent me her outfit which is currently getting disinfected to return back to her. If you remember, Tori got a lung transplant last year in May and I don't want to give her any of my infections, so I am cleaning the outfit with Vanish oxi hygiene which claims to kill 99.9% of bacteria, it's in the washing machine as I speak after having a soak for an hour. Pete was boring and wore a hat or mine, he ended up looking like someone from N-Dubz haha!
Then on Sunday we went to the Lakes for a few days away, we are so lucky that we can go to the Lakes as many times as we like, within reason of course! Alfie can come with us and it doesn't really cost us anything. The Lakes will always hold a place in my heart, its where we got engaged!

The walk we went on, on Monday was too long, I over estimated myself and had strop half way as I was too tired and my lungs were on fire. The walk was on really rocky ground and it was so tiring, poor Alfie struggled at times and had to go in the bag for a rest at one point. Sadly I didn't fit in the bag and Pete had to give me a telling off when I refused to go any further. We turned back once we saw a hill we had to walk up, no way was I going up there, Norman let us down this time, the walk was poor and was not on the level! To finish the day off the pub we really like and was looking forward to going to, doesn't do food on Mondays (!) so we tried this other pub and the food was rubbish!
However Pete and I are not ones to be put off, so we tried another walk on the Tuesday, shorter and alot more friendly! I have learnt my lesson, my body and lungs will only allow me to do walks of 3 miles or lower on level, none rocky ground!
Needless to say I am exhausted now. I think overall I have spent more time sleeping this week than not, I've woken up at about 10am or later every day and slept in the car when travelling whenever possible! Even though walking totally tires me out, I like to go on walks as it reminds me that even though my body is poorly, I can still breathe and walk and although not as good as others, I'm alive and functioning! Feeling tired means I know I have tried my hardest and I've pushed myself, I suppose its a feeling of self satisfaction like someone who does a sponsored run, its my version...! In a way if I don't feel tired I feel like I'm lazy, it's my way of knowing I've done all I can for the day.

Pete has taken the rest of the week off work and today we have bought some plants for the garden and planted them. We bought a strawberry plant, I know it will probably die within a month as I have no idea what to do with it, but it will be fun to try..! I wore a mask when digging in the compost as I've read lots of bacteria are in there including cepacia which is a CFers worse nightmare from what I've heard, patients with this on their lungs aren't even allowed on the CF ward! So call me paranoid but I wore a mask left over from when we decorated.

Walking on the Level

Hello!

Sorry again I haven't posted for awhile, I guess it's a good sign because it means I'm busy which means I am feeling good!

We came back from the Lake District yesterday, we went Sunday to Tuesday and had a lovely time. My brother and his girlfriend were supposed to come with us, but her Grandad sadly died on Saturday night so in the end my brother still came after some persuasion! It rained on the Sunday so we just stayed in playing boardgames and cards and drank, and and went out for a meal at he local pub. I was designated driver that evening, the house is in the middle of nowhere up a massive hill which involves driving up a long, windy road and in Pete's car which I'm not used to driving, it was an experience to say the least. Pete does most of the driving when we usually go to the Lakes, so I'm not really used to it! We got home in one piece and I only stalled twice so I can't have be that bad...!

The next day we went for a walk with a stop at a pub halfway and then on Tuesday my brother left early and Pete and I went for a walk around Grizedale Park on one of the easy routes before heading home. If anyone is going to the Lakes and wants to go on walks but is like me and pretty rubbish at walking due to CF or anything else that limits your mobility, you should purchase a book called 'Lakeland Walking on the Level' by Norman Buckley. We have just purchased the second edition as its great for me, there is no way I could do alot of the walks in other books as there are just far too many hills, there only needs to be a small slope and I'm coughing and breathless. These walks try to be as flat as possible, yes there are still slopey parts, it is the Lake District after all but they are perfect for people like me. The walks vary from about 1 mile to 7 miles and often it has short cuts if you are getting tired. It outlines how much rise and fall there is at the start of each walk so you have an idea of how hilly its going to be too.

I'm tired today after our trip so going to take it easy and leave you with these photos!

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!

Bank Holiday Galore!

Whoops, sorry it's been a while! In my defence I have been busy and then too tired the rest of the time!

There have been what feels like a million bank holidays which really don't affect my life that much as I don't work on Fridays or Mondays! However Pete has been off work as he took the days off in-between, so we have had a busy two weeks. Back to normality now and a chance to rest!

We started off Good Friday by commencing decorate the living room. We started by Pete stripping the back wall and I did the borders for the paint. We finally finished on Tuesday after having to apply four coats of paint along with doing all the glossing and killing the mould on the wall, so that my mum could put up the wallpaper on Wednesday whilst we were away. I do not like decorating one bit, it's messy, there's crap everywhere, your house stinks and to top it all off we had to wear masks when it was really warm, I don't enjoy feeling like I can't breathe when I’m already out of breath from moving around so much! There are some pictures of us in our sexy masks on Pete's phone but I’ll leave that for another day.... Just a note to those with CF, when stripping wallpaper you should wear a mask as mould likes to grow under wallpaper (advised by my physio), I could physically see the mould growing under ours but even if you can't see it, there could be small particles. A normal dusk mask is not good enough as mould particles are so small they can still get through, you need to get a mask that is FFP2 or FFP3 (it's printed on the mask), and FFP1 isn't good enough. I found this out after researching on the internet, click here for the link.

Here is our living room before,


After!




On Wednesday we drove down to Kent as it was finally our trip to Hever Castle! We stayed in Tunbridge Wells on the Wednesday night and went out for a meal which involved me walking up a very steep hill on the way back! Then on the Thursday after a rough start as Travelodge just decided to turn the water off before Pete had, had a shower, we went to Hever Castle. Here are some photos from the day

Then on Friday it was the Royal Wedding of course! Yes I think I am a royalist, I loved it! How can you not love the fact the Queen is riding in a 100 year old carriage or all the beautiful clothes or all the tradition, I think it’s great! My friend came around to watch it with me as Pete went to the rugby; she brought some lovely cupcakes with her with Will and Kate on so I forgave her for being half an hour late and missing most of the ceremony!

She was planning to stay all day but I had to ask her to go home in the afternoon as I really needed to have a nap and just be by myself so I could relax a little, I was so tired I wasn’t being a very good hostess. She then came back in the afternoon and somehow I ended up dying her hair and we got a takeaway. I also got a text from Pete saying he was on Sky sports as they’d videoed him and his mates wearing masks of the royal family at the rugby. So if you were watching the Leeds Rhinos game and you saw some idiots wearing masks, my husband was the Queen!

We went to church on Easter Sunday and then to my Nana’s for a Sunday roast which was nice. Then we have also been to a barbeques at my mum’s and I also went out for tea with my friends on Sunday.

So like I say I have been very busy and as a result feeling very tired! I’m just going to try take this week easy as we are going on holiday soon and I don’t want to end up ill and spending my whole holiday sleeping and feeling exhausted. I think Alfie is due a few walks this week though as he has been neglected slightly and been very well behaved so deserves them! By the way here is a picture of our new fridge freezer, it finally arrived after lots of complaining by me and ended up being delivered in a car by one oldish man, I was very worried but it worked out in the end..!

Presents On Our Doorstep

Well I have only injured my fingers once more since my last post, this time I managed to get a key stuck into my flesh whilst trying to lift it off a hook, the result was three gashes in my finger, one which insisted on bleeding every time I took the plaster off for about two days. I now seem to have got a hair stuck in it from when I've been cutting hair and I can't get it out, so now it hurts when pressure is put on it! Six days have passed and no injury, so perhaps that part of my life is over now, phew!

We have ordered our new fridge freezer, we went for the retro one as we found a website that sold it alot cheaper online, whether it turns up is a different matter! Pete, my dad and brother took out the old one on Saturday and got rid of the integrated cupboard, the freezer is still working for now, I hope it doesn't pack in before the new one arrives! We need to put some flooring where the cupboard was else the new fridge freezer will not be level, Pete says there are some spare in the garage and he'll just need to saw them to fit them in the gap. I hope it is as simple as he says! We all know Pete and I are not the best at DIY!

I've not been up to much this week, we have a few expensive weeks coming up so we are saving our money for those! However I did go out for a pub tea with my friends last Friday and then an Italian with my family on Saturday for my brothers birthday, so not doing too bad! That reminds me, I had serious gutwack on Sunday morning. I don't think I took enough tablets with my meal! I was sweating all night and then woke up in the morning with terrible stomach and back ache. This was proceeded by me sitting on the toilet for so long Pete came to check that I was OK and when I left I advised him not to use the bathroom for a while. Not pleasant and I won't go into anymore details of what gutwack consists of as it ain't pretty!

We have Hever Castle coming soon and I'm majorly excited! We are also going to decorate the front room over Easter and I've already purchased the wallpaper. I've been investigating my options as to how I can prevent breathing in any fungus when we strip the wallpaper. A CF friend suggested these special light bulbs that destroy any spores that come into contact with the bulb (http://www.eudemonuk.co.uk) so I'm going to order one of those and then get a mask specifically to stop you breathing in mould spores.

This morning Pete found two little bottles of Tropicana on our doorstep! I was straight away suspicious whereas Pete thought it was nice. Anyway Pete has drunk his and is still alive and I looked on the Internet and it seems it's some kind of promotion! They are on every ones doorsteps so now I'm starting to think it's nice too, maybe I should become more trusting..?

Rainy Anniversary!

I'm back from the Lakes and I'm tired so this will be a short blog.

We had a great time even though it rained alot of the time! We managed two walks, one was about an hour long around Grizedale Park and the other was 3 hours (!) by Coniston lake, we had a picnic by the lake during the walk, it was very nice. We found the walk in a book where all the walks in there are flat i.e. no uphill bits. It's like the book had especially being made for me! :o) There were still a few uphill bits that I struggled with (Pete picked one of the more difficult ones out of the book...) but nothing a person with healthy lungs couldn't cope with, it would be very difficult to find a completely flat walk in the Lake District, afterall it is very hilly! Needless to say I was tired afterwards and had to have a nap and I'm still tired today so just taking it easy.

Oh and I did it again, I forgot to take spare disks for my I-neb...! So only had 12 cycles when I do 9 a day! Had to cut out my hypertonic saline and only do my tobi once a day, this cut it down to three cycles a day. So had a nice break from my nebuliser regime for a few days!

Man makes fire with help from wife...Stylish as ever!Our Wedding CandleHow cute am I?!