Happy Festive Season!

I'm still here! 

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

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

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

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

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

Merry Christmas to everyone! xx

I can't be fixed!

Today at yoga I was informed by a lady that it must be a pain to have asthma, this a regular thing, people assume I have asthma as I use a blue inhaler like asthma sufferers. I told her I didn't have asthma but cystic fibrosis, she seemed quite shocked and exclaimed 'oh poppet that's even worse!', I wasn't really sure what to say apart from 'yeah it's not great'. She then proceeded to tell me how I should try reiki to help me. I never really know what to say when people try to suggest things to try 'fix' me, I haven't asked them for advice, usually their advice is useless and I don't really want to discuss my treatment plan with a complete stranger. 

Here are all the tips I have been given over the years that I can remember - take an antihistamine, have a glass of water, take reflux medication, stop smoking, have a cough tablet, have a drink of honey, try reiki, go see a doctor, have a lemsip, get out of the cold, eat garlic, go get in bed, have a sit down, have some vitamin C, think positive, have a rest, get a good meal in me, I'm sure there are more that I've forgotten. None of these things are going to make my CF go away, they will not get rid of the mucus on my chest making me cough, increase my lung function to stop me being breathless or get rid of the infections breeding on my chest. A few of them might help me temporarily such a sitting down or having a rest, however this is how I am ALL the time, I can't spend my life sat down although I try my hardest to haha!

I get sick of people trying to 'fix' me. Complete strangers I don't know and don't care to discuss my health with. If it's not advice they are giving me, its useless comments such as 'oh you have a bad cough', yes and the sky is blue and grass is green, thanks for that wonderful insight! I reckon I can't go 48 hours without getting a comment about my cough. Think how annoying it would be if you had a massive spot on your face that you were already self conscious and annoyed about and you can't get rid of it. Imagine people keep telling you about this spot and stupid tips on how to get rid of it. Now imagine this has happened for 27 years! So yes I try to be polite but it gets tiresome to the point I try to not cough, do it quietly to avoid drawing attention or avoid doing activities that make me cough.

Before I went in to hospital but when my chest was getting really bad I forced myself to go to the gym and was coughing lots, a guy stood there and mimicked me coughing then expected me to laugh with him. I didn't find it very funny, in fact I was mortified. 

I know people like to show concern, but please don't try to fix me and please don't tell me I have a cough, sometimes its worse and when it is my family and friends notice and are permitted to comment, this is the only time!! However to the general public, yes I have cough and it's not going away, its here to stay. I can't be fixed, I accepted a long time ago this was how my life was going to be, I live with a life threatening condition, it never gets better, all the treatment I have is to try keep me stable and not to make me better. I know for healthy people this is difficult to understand, they have a problem and they go to the GP and the GP makes it go away, they have a cold and spend a few days in bed and then are back to normal. This is not what happens to people with CF or other long term conditions, I am never going to be better, I have to learn to live with my condition.

Past Few Weeks

I've kind of been putting this blog off as I couldn't be bothered with it but I suppose I should post an update for anyone that still reads!

I ended up on IVs again as I caught a cold which it seems is my enemy! I called the hospital and they put me on septrin at first to try stop me needing IVs, I drove to Leeds and picked up the prescription, got the tablets from the chemist. I decided to flick through the leaflet quickly before I took it as I've never taken septrin before and like to know what lovely side effects I may experience, so I know its the tablets causing it. I didn't get past the first section of the leaflet as I discovered septrin contains trimethprim which I have on my notes as been allergic to. I have a memory of vomiting in my Beauty and the Beast slippers as a child, my mother cannot recall this. I was unimpressed to say the least so called the Doctor who said 'yes I remember reading it in your notes but I forgot', wow good to know. Anyway she suggested I take one anyway and see how it went as it was a long time ago and it wasn't a serious allergic reaction. There was no vomiting so that was a bit of good news.

The septrin failed me and four days later I felt like I was at deaths door, I was getting out of breath talking, was so tired and achy and my sputum was going really thick and dark green. On the Monday I waited until our cleaner had done the bedroom and and then crawled in to bed, I was fully clothed with slippers on and was under the duvet and still shivering. I had to take Alfie to the vets as he had been walking on three legs all weekend so dragged myself out of bed and somehow made it, luckily Alfie had just pulled a muscle, that dog is a serious whimp! I decided whilst in the vets I was indeed going to die and called the hospital to tell them I was feeling very unwell so they wanted me to go in and see them. I went to my mums where I proceeded to cry as I was fed up and could not face driving to the hospital and struggling to get a car parking space and walking from the car to the ward. So my mum took me thankfully and gave me some pringles to cheer me up, my mum had only just come back from holiday so was pretty tired herself bless her!

I had a temperature of 38 degrees (I think it was 39 degrees the next day) and since I'd only had IVs two weeks before and I confessed I would struggle to do home IVs they decided to admit me in to hospital. Except they there were no beds on the CF ward and they couldn't locate me one on the respiratory ward so I had to go back home and wait for them to call me. Which they did the next day so off I went with my lightly packed suitcase (I wasn't planning on staying long). They decided I might have the flu so started me on tamiflu, they also put me in isolation so I couldn't infect anyone else. 

I went in on the Tuesday and it was my sister in laws wedding on the Saturday, so as you can imagine I was extremely unhappy at this turn of events as I'd been looking forward to it for ages and I was also supposed to be a witness. I told everyone who came in to my room that I wanted to go to this wedding and could I go on home IVs or go out for two nights? (the wedding wasn't local). It turned out I did not have the flu, just rhino virus (the common cold) and my temperature was coming down slowly so they agreed to let me go on home IVs on the Friday as I was feeling a lot better and felt I could manage. I was going crazy anyway as I wasn't allowed out of my room, even to use the ward gym and there weren't even any windows in my room to spy on people! 

The wedding was great, I didn't exactly feel like partying and had lots of treatments to fit in but I managed it and I was there which was the main thing. I went to a wedding and fitted in three lots of physio, all my nebulisers, three lots of IVs and an afternoon kip so I was quite proud of myself! The hotel had a fridge they let me use thankfully and I had to use a jug to wash my hair as the shower wouldn't lift down, all these little things people don't realise you stress about!

The rest of the week I spent hidden under a sleeping bag on the sofa watching lots of ER, then I decided a few days before I was due to finish my IVs that I should get out and about. It's sometimes difficult to tell if you feel better when you are lying around all day, especially with all the side effects from the IVs.

When I went to finish my IVs my fev1 was 45% which is the best it has been in ages so I am really happy about that! I managed to keep on my weight through having supplements so I'm practically back to normal now. The only complain I have is that I keep getting mucus in my throat especially when I lie down and I keep waking up because I can't breathe! The physio thinks this might be coming from my sinuses, so hopefully will get better as my cold goes. I also had my flu jab when I finished my IVs, the earliest my GPs could fit me in was the 31st October and it's just easier to get it done whilst at the hospital.

My glucose tolerance test says I have mild diabetes so at the moment I ma having to monitor my blood sugars before I eat and an hour and half after I've eaten. I don't know much about diabetes or what the blood sugars mean, the lowest so far is 3.2 and the highest is 17.6, I know that is higher than they should be but no idea what my fate is going to be! I hope I don't have diabetes because my fingers are already sore and it's just another thing to make eating even more complicated than it already is with these stupid enzymes! I seriously don't know how much more treatments I can fit in to my day and still have some form of a decent life! I might actually cry if they tell me I have diabetes.

Pete managed to raise £200 for doing the Great North Run which we donated to my CF Ward last week, so thanks to all those that donated!

Here are some pictures from my sister in laws wedding, we didn't get many! She looked gorgeous anyway which is easy for her since she does all the time!

Ace Husband

It's nearly the end of IV time and the past 12 days have not been the best, but neither have they been the worse. I was put on Aztreonam and Colomycin and my eyes have not gone sore at all, so it must be Tobramycin that is the culprit. However I have had terrible headaches, soreness in my joints and muscles and general lack of energy. However me being me decided that IVs were not going to ruin our plans to go to the Lake District last weekend so we loaded everything in the car and I was quite relieved I have an Astra as there was lots of stuff to take, and off we went. We did a short walk one day and that's about it, however I still came home feeling like a sack of crap which has continued all of this week. I'm still glad we went though as it was nice to get away, I love it in the Lakes, I love the views, fresh air and feeling of smallness.

I always convince myself that life is going to be normal when I'm on my IVs and this never happens. The reason for this is I forget all the little things that IVs do to you and how difficult and stressful it makes your day. One minute I can sleep for England, the next minute I can't sleep at all, things smell funny, I smell funny and as a result feel dirty, having thrush drives me insane, my skins itches, all my clothes feel tight and scratchy, getting washed is like a military operation due to a stupid needle in my arm, washing my hair is even worse, my dressing itches, my hands go dry from cleaning them so much and you guessed it...they itch, I have to plan everything to try fit my IVs in, I feel like I'm on another planet half of the time, my mouth feels like I'm hungover for the whole 2 weeks, I get daily headaches, my joints ache, I'm not hungry at all and feel sick...no wait now I want to eat a million chocolate bars, my sputum goes all thick from dehydration, it hurts to reach for the gear stick in the car because of my needle and lucky old me because I have hardly any energy to cope with any of these things.

Luckily I have an amazing husband because no-one else seems too bothered that I'm on IVs, people get so used to me been on them. Oh you're on your IVs again? Yep that's me, on my IVs again. Maybe people know I have Pete to help me so just keep out of it, I don't really know what I expect. Pete has got up every morning at 6am to prepare my IVs and put them on for me, some mornings I barely remember him doing them! He has also done my evening IVs and when we were in the lakes he did them all. He has helped me with my physio, has cooked tea most nights and taken Alfie out after work a few times. This is what being a CF partner or a partner of anyone with a disability involves and I really don't think they get enough credit, Pete doesn't have to put up with this like I do, he chooses to put up with it. My brother pointed out when we were in the Lakes that Pete does lots for me and yes he does. Pete lives with me and knows what makes me tired, what I can't manage, he understands my limits. On the hand hand he also knows what I am capable of, he knows that I'm not lazy (well maybe sometimes hehe) and I hate it when I useless. He doesn't rub it in my face or expect anything in return and it's taken him a long time to learn all these things, I sometimes worry one day he will have enough and leave me. I hate people that don't appreciate what they have and I know I am very lucky to have such a wonderful person in my life. He describes himself as 'a planner by day and carer by night!' I'm not sure if I like him labelling himself as my carer as I'm more to him than a patient! I know he isn't too serious though, I think he's a planner by day and an ace husband by night!

Pete is doing the great North Run today, sadly because I'm on my IVs it wasn't possible for me to go with him to cheer him on which is disappointing but he understands. I'll let you know how he does!

Here are some pictures from the Lakes

My Hero

Three years ago today I married the love of my life! I love him with every inch of my body and feel so lucky to have found such a caring, generous, gorgeous man to spend the rest of my life with! Here is a little video I made as to why I love my husband so much..!!

12 Weeks!

About two weeks ago I started to get a funny taste in my mouth and funny smell up my nose, and I knew my good patch was over. According to the physio I am not some kind of freak, its the infection I can taste and smell, I feel like i'm some kind of bloody sniffer dog that can detect infection! In addition to this I started to become more productive, I was getting dull pains in my lungs and I was starting to feel more tired.

I coughed my way through yoga and this man (apparently a GP) who has already commented on my cough to the yoga teacher and told her to tell me to take gavisgon came over to me afterwards and started telling me I have reflux and need to take some gavisgon before class. This annoyed me for two reasons, firstly, I do not like coughing infront of everyone and causing the yoga teacher to have to pause during her instructions because i'm so loud, so to have someone blatantly point out it's annoying is upsetting. Secondly, he has been told I have CF so why is he is insisting on interfering and trying to give me medical advice?! Even when I explained to him it was mucus on my chest he kept going on about reflux, I just wanted to yell 'leave me alone you annoying, interfering old man and mind your own business!', instead I just kind of ignored him after a while and walked off. I  was so annoyed I didn't go to yoga this Friday just gone, as clearly my coughing pisses people off.

On Sunday my friends and I did this modelling experience as my friend got us vouchers for Christmas last year. They do your hair and makeup and take photos of you. It was fun and we got some good photos, then we stayed in Manchester and went on a night out. I felt shocking the next day even though I had not drunk any alcohol and I only slept for 3 hours, I had toilet troubles and kept waking up sweating. Here are some photos from the shoot 

I had outpatients on Friday, my weight is down a little at 53.8kg so I was told to try put a bit more on by the dietician. She also confirmed after a lengthy description of my stools (always my favourite thing to do) that I was not taking enough enzymes which has probably contributed to my small weight loss and massive appetite. So stools wise.... pale, fluffy, large stools mean you are not taking enough enzymes, they do not have to be oily, orange, floaty and extremely smelly as I thought. Also going to the toilet five-six times a day is a sign too! I've hardly had any stomach pains though which is weird as i'd expect that if I wasn't digesting my food properly.

My fev1 is a steady 42% which is great and the physio thinks all the exercise I have been doing is helping this. The doctor wanted me to go on IVs though as I do feel as though i'm slipping and when I suggested going on oral Ciprofloxin I was informed one of the psuedomonas infections on my chest (I have two types of Psuedo on my lungs) is very resistant to most things including Ciprofloxin. So I agreed to go on IVs, blugh! I haven't had any since May so done well! So I am starting them tomorrow, i'm really going to try and keep up with the exercise though, it's just so difficult when your head feels all fuzzy and moving your body is like trudging through mud. 

On Saturday was my sister in laws hen night so I was out in Manchester again! We went in to town in a pink limousine, had chinese then went to the Birdcage. I have never seen so many women in one room and so many hen parties! I left at 11.30 with Pete's mum, Pete had gone to watch Man City with his Dad, so we were both staying at his parents. The next day we went to see some friends who recently had a baby and then had a meal at Pete's parents with all the clan over after going to have a look where my sister in law is getting married in a months time. I can't believe it is going to be Pete and I's three year wedding anniversary next week! Here are some pictures from the hen do, I have figured out how to do fancy things to photographs now to make me look better haha!

So today and I am exhausted and not really done much apart from take Alfie out for a short walk!

Pete is doing the Great North Run again in two weeks time and is only going to take sponsorship money if he beats his time from last year. He is going to donate the money to the CF Ward (Ward 6J, St James Hospital, Leeds) that look after me. Because of this there is no just giving page, if anyone would like to pledge to sponsor him please let me know either on here or facebook etc. We would both really appreciate it! He has some new trainers to hopefully run faster and is training ever so hard, he ran home from work last week! Thanks in advance!

Summertime

Well I must admit I am totally confused by how many enzymes I need to take with food! I have not moved over to Nutrizym 22 yet but have been experimenting with Nutrizym 10. I am not taking any with breakfast or lunch and only two with my evening meal and 4 with a really fatty meal such as takeaway. Yesterday I went to the cinema and ate about 2/3's of a large popcorn and two small milky ways (well Lidl's version of them!) and only had one tablet. I seem to be more regular and less bloated! I need to speak with the dietitian at my next outpatients appointment as I am so confused, i'm not sure what I should be looking for in my stools (gross I know). I used to get belly ache and horrible stools if I didn't take my tablets, is it possible to become more pancreatic sufficient as you get older!? I think they need to test me or I need to confirm what I should be looking out for. It's really weird eating and not taking any tablets, I keep getting them out of the drawer automatically! My weight is going up if anything as I am just hungry all the time, it's driving my insane, I don't know if this is linked to me not taking my enzymes. Food just tastes so good at the moment!

I'm really stable at the moment and feeling good. Don't get me wrong I still have CF and have serious lung infections and lung damage and my energy levels are not the same as someone without CF, I still cough lots and get breathless and have to do loads of treatment every day. Yesterday in the cinema I was coughing loads and was worried I was annoying everyone, I was scared I'd even coughed a greeny on my hand (I hadn't thankfully!), so I still have to deal with crap like that on a daily basis. I'm saying this because some people seem to think that when I say I'm feeling good I am as healthy as a normal person, no not at all, one can only dream... However, I am good for me, but if a healthy person felt like me they'd probably be curled up in bed whining.

I have been to the gym four times a week the past two weeks. Can you believe that?! Yoga once a week and gyming it three times, I swear if I ever have a transplant and have normal energy levels I'm not going to be able to sit still because even now if I feel good I feel I need to be doing stuff to keep that way. Obviously my gym sessions are not anything to shout about, there was a small child next to me on Thursday who was going faster on the cross trainer than me but I'm beating my personal bests if you can call them that, so I'm proud and happy with myself.

I feel like life is how it should be at the moment, I wake up on a morning and rather than dreading the day and figuring out how I'll manage to get through it, I can wake up and look forward to the day. Summertime is definitely the best time of year even if we are in England and it rains for most of it!

My Clever Little Alfie

I feel like I have neglected Alfie for a while on my blog so here are some videos of him doing stay, recall and stop. He is really good at obedience and training whatever his other faults may be. Love him so much!

Nutrizym

I had outpatients on Monday and all went well, I seem to be having a good streak at the moment, 2 months without IV's and counting! I've had to have my port flushed twice since my IV's and had two outpatient appointments, not a usual occurrence for me these days! When my port is not accessed it has to be flushed every 4-6 weeks, which basically means they put a needle in the port, flush in some hepflush and pull the needle out whilst pushing the last ml of hepflush in. Hepflush helps prevent blood clots in the line and pushing as the needle is pulled out creates positive pressure which prevents back flow in to the port.

When she flushed my port on Monday it really hurt to the point I thought she had missed the port, when I looked I saw she had put the needle in at a funny angle,kind of diagonally which explains why it hurt! It also hurt when she pulled the needle out and the area is all bruised now so not the best flushing of port experience.

My lung function is steady at 42% and my weight is 55.6kg so finally back up to pre Christmas standards. I must admit i'm struggling with the weight gain, I know it's stupid but when you lose weight and put it back on you feel fat and frumpy no matter how much you weigh as you are used to seeing yourself slimmer! My appetite is insane, I just want to eat all the time but then I get bloated and feel horrible afterwards so as well as the weight gain i'm frustrated at my appetite! I know it's all good CF wise and it keeps me healthy which makes it even more frustrating as one part of me hates it and one part of me knows its good for me!

The people who make Nutrizym 10, which are the tablets I take with food have decided in all their good wisdom to cease production which leaves me with a slight problem. I have never tolerated Creon which is the usual choice for people with CF, I was on Pancrease and they stopped making that a few years ago so I moved on the Nutrizym 10 and it's only the last 18months I think I have finally figured out how many tablets I need to take with food. Everyone with CF is different so you can't be told 'take 4 with a fatty meal' '2 with snacks' as some people with CF need to take 20 with a fatty meal, some only need to take 1! Its a case of trial and error. I can't imagine been able to eat and not having to take tablets, to me that is weird. Every time I eat I have to try figure out how many tablets to take depending on how fatty the food is, then I have to space the tablets throughout the meal as you can't just take them all at the start or at the end. I don't always get it right and if you take too many you get constipation, you take too less you get fatty, very smelly stools and belly ache and bloating.

So with Pancrease I took 9-10 with a very fatty meal such as a takeaway, 5-6 with a meal and  3-4 with some cereal, lunch etc. To be honest i'm rubbish at knowing how much fat is in food as i've never had to watch my weight or diet or anything!

The we went on Nutrizym 10 and I figured I needed to take half of a Pancrease dose minus 1 as a guideline, so 5 with takeaways, 3-4 with a meal, 1 or 2 with snacks, cereal etc. I find taking less is better than more!

But now they don't do Nutrizym 10 and i'm having to take Nutrizym 22, if this doesn't work out I may have to try Creon again even though they give me the runs and make me look pregnant (I hope if you don't have CF and are reading this you are grateful you can digest your own food!). I have a suspicion I may not be totally pancreatic insufficient as the doses I take are quite low compared to others and I can get away with having a few biscuits or a hot chocolate and not taking any tablets, plus all in all I do not struggle with my weight half as much as others with CF so I suspect my pancreas is not totally useless! I think this may be partly why I don't get along with Creon, who knows..? Trouble is that Nutrizym 22 is double the strength of Nutrizym 10 so I have been told to half the dose of what I normally take, how you can half one tablet is still a  mystery, I think i'm going to open the tablet and only have half of the little balls inside, the other option is to not take any tablets with food that only required 1 Nutrizym 10 and I'm quite looking forward to the prospect of eating and not taking any tablets! 

I don't have any Nutrizym 22 yet and still taking Nutrizym 10 whilst stocks in my cupboard last! But I am doing some trial and error by not taking tablets with certain foods, so far I have had a cup of hot chocolate and 3 hob nobs and I had salad with salmon for lunch, all with no tablets. I feel like this experiment is going to help me make some grand discovery that in fact I do not need any tablets with my food at all and I have lived a lie all these years! I think i'll hold off having a takeaway with no tablets just yet as that would be one nasty poo the next day....!


I'd like to mention the conversation I had with a registrar at Outpatients on Monday. The dietitian had left him a note saying I was moving on to Nutrizym 22 so he asked me how often I would take it? I informed him I needed to take them with food, 

'so three times a day?' he asked me. 

'No I take them EVERY TIME I eat, it's the alternative to Creon'

'right ok' he said looking confused

So he gave me a prescription as he left and what has he prescribed me? Nutrizym 22, 1 tablet three times a day! Sigh...If only the dosage was so easy....! This is why I hate seeing the non CF doctors!

I'll leave you with a cute picture of my cousins little boy, we went for a walk on Wednesday and I also saw them yesterday at my Nanas, somehow my cousin ended up washing my car for me whilst I looked after him, bonus! Alfie was very well behaved with the baby and he also did excellent in dog training, I keep meaning to try get a picture of him doing agility, very proud of my pooch!

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

CF Week

Today it is CF Week so I have been doing my best to try educate people about CF by posting blog posts on facebook everyday. A fair few people have looked at them (I can look how many people have viewed posts etc) so hopefully it has done some good. I'd like to arrange some kind of fundraiser one year but I'm not very good at stuff like that so wouldn't know where to start!


Yesterday I finished my IVs thank god! This course has been horrid and seemed to last forever! The headaches settled down slowly after the first week which was a massive relief but then my eyes really started playing up, so puffy, weepy and sore. I looked like some kind of drug addict with my red, baggy eyes! It got to the point where I couldn't see properly at times and I considered phoning the hospital as I wasn't sure if it was an allergic reaction, I'm sure it is but if it's not serious I tend to put up with it. Anti histamines do not help at all, neither goes putting lots of aqueous cream around them to help with the dryness. The only thing that seems to help a little is if I put some comfort eye drops in my eyes a few times a day. I think its the Tobramycin that causes it as they are worst on a night when it's going in me and the following morning.


On Wednesday I looked a right mess, my eyebrows desperately needed  waxing, my hair looked shocking, puffy red eyes and to top it off I woke up with a coldsore! Grrr! I got my hair done on Wednesday, finished my IVs yesterday so my eyes are looking better already and I got my eyebrows waxed today, the only remaining problem is the coldsore! At least I am feeling back to my normal self anyway!


My fev1 was 44%, my weight is 54kg and my sats were 95% so all is looking OK!


I had a fit to fly test about 3 weeks ago and failed miserably. My sats fell to about 85% when given oxygen for 20 minutes that would be the same as on a plane. Therefore I need extra oxygen on our flight to Italy, I've never needed oxygen for a short haul flight before so I'm a bit gutted really. Luckily Thompson who we are flying with provide free oxygen (we checked when booking just in case) and the form my Doctor needed to fill in was really simple. However the letter needs to be signed no more than a month before travel so they have said they can't accept it and I need another, so annoying! I've just changed the date on the letter and will send it again in a few weeks...! I've also sorted our travel insurance, the quote I got before was no longer valid as I needed oxygen on the flight and they wouldn't cover me anymore. Luckily the broker (Gill Noble) found another company for me and I also called Insurance Choice but the brokers quote was cheaper at £185 for Pete and I, so we went for that. The joys of having an illness and going on holiday!!

Still Here!

Boo! Don't worry I am still alive!

I ended up going on my IVs and I am on day 7 today. I am on Mero and Tob and the nurse came to see me today to do the usual shenanigans , weight is 54.2kg so working its way up, sats were 92%, yikes! They always seem to be in the low 90's these days, no explanation has been provided. My fev1 when I started IVs was 43% so not really low but the doctor felt that if I felt I was not feeling my best and slipping I should start some IVs pronto rather than wait and need them in a few weeks anyway.

These IVs suck big time, I am sick of getting pissing headaches and I'm sick of all around my eyes being red raw. I'm sick of having bowl problems and I'm sick of wanting to just sit around and do nothing because IVs claw at my soul and make me in to a self pitying fool with no energy. The doctor told me to take is easy and rest so that's what I am trying to which involves watching stuff I have recorded on our new sky+ box (yeay we have sky!) and watching lots of naked, fit men in Spartacus... This programme makes me think I should be going to the gym and I have been once this week, better than the last three weeks when I went zero times! I will get a toned belly, I will get a toned belly...! :o) I can't complain, the daily debate in my head seems to be 'who is the fittest? New Spartacus, old Spartacus, Crixus or Gannicus?', I still can't decide!

Other debates in my head are 'should I go the gym?', 'should I get out of bed?' 'will it ever stop raining so I can walk Alfie?', 'should I make myself eat something?'. Other thoughts in my head 'sh!t I forgot to get my IVs out of the fridge!', 'go away headache I hate you!', 'why is so much of my hair falling out?', 'has anyone played on Draw Something on Petes phone?'.

I'm going to tell you something and you won't believe me but it's true! The prescription clerk at my GP's agreed to write me a prescription to be ready for Tuesday when I only asked for it on the Monday. She broke the rules and did not make me wait three days for a prescription! I told her I had run out (which was true) and needed the medication and she sorted it for me, it's seriously a medical marvel!

Pete went to Scotland sailing last week and I was all alone. I actually enjoyed it the first few days, I have always been abit of a loner, enjoying my own company. I could eat when I wanted, watch what I wanted, spend all day talking to Alfie and I didn't have to wear earplugs in bed with the snorer away from home. No wait... one of the snorers was away from home, Alfie was still here, although he can be put in his basket when I fancy it. I went to my mums for tea twice and had a friend stay over one evening after we had a Spartacus night, yes I have introduced her to Spartacus and now she is in love too. Towards the end of the week I did start to get lonely and miss my hubby even though we spoke everyday, also very tired since I needed IVs and had to do a lot of things myself which Pete usually does. I managed to put the wheely bin out but getting it back up the drive was a big no, so had to leave that for Pete on his return. I had a few ready meals, had to empty the dishwasher myself and had to get the ironing board out and put it away which I hate. Glad my darling husband is home now though as I did miss him lots! He hurt his thumb by getting it stuck in a rope when the boat was moving, not the best thing he's ever done! It's all bruised and sore but luckily not broken. He is temporarily suspended from doing my IVs as he was caught yesterday wiping his nose on his hand then carrying on preparing them, when questioned he told me 'it will be alright'! This is not alright since its all supposed to be sterile, so although I appreciate him doing them for me, I won't appreciate it if I get an infected port, so I think I need to keep an eye on him next time!

Aftermath of a Busy Weekend

Last week I thought I was starting with a cold/virusy thing, it didn't help that I drank out of my friends cup by mistake who had a cold, talk about being stupid! I went a little crazy with the vicks first defence but if it works who cares?! I keep getting headaches, its basically when I do anything that makes me cough, get breathless or tired, so walking Alfie, coughing in general, doing my physio (every single time!), getting a shower, doing anything! I've had a headache for 80% of the time the last week or so. The back of my neck is sore a lot as well, I think this may be linked to the headaches but not sure. My chest is feeling tighter, my sputum is thicker and more often and I'm tiring a lot more easily than usual. It might just be general CF crappiness, I'm bored of trying to figure out how to stop feeling ill, as whatever I do it still happens and whatever the cause I don't feel great.

This weekend we went to a surrogacy conference in Stafford, we stayed over the Friday and Saturday night. I feel shattered! Pete had to do my physio for me yesterday and he has been washing all my nebs, he also cooked tea and I had to follow him when driving (we had to go in two cars) as I was too tired to even think where to go. After living together for so many years Pete seems to have some kind of sensor as to when I need more help and he just does it without moaning, he really is wonderful. I guess our relationship wouldn't work if I had to ask him all the time and he made a fuss about it like some men would, I think I got very lucky to end up with him as a husband.

I'm upset as I was feeling so well and now I'm sat in my tracksuit bottoms (they are like my comfort blanket!) and can't even be bothered to make any lunch as I'm not hungry so it's not worth the effort, I'm just having an ensure plus instead. I'm hoping if I rest today I will feel better tomorrow. I wish this headache would go, they are so debilitating. Only five weeks since I had IVs so I'm hoping some rest will sort me out.

We had a great weekend though and I'll talk about it more on my other blog when I get around to doing it. This is what so annoying about CF though, to those people who met me at the weekend I probably seemed perfectly fine which is good in a way, however then people like myself are judged and assumed to be able to do everything others can do and people make assumptions about whether we can work (seems to be the newspapers hot topic at the minute), are we even disabled? They don't see the aftermath, struggles and in-between the lines. Sometimes I like this about my disability as I can try pass as a perfectly healthy person (with a bad cough!) and not be treated differently, but other times I don't like it as I feel people judge me on what they only see and they don't understand my disability and how difficult it is to live with.

Donating Blood

Pete gave blood last week, I'm very proud of him!

The needle they use is about the size of a venflon so quite big but the nurse got in easily after cleaning his arm for like 40 seconds, they don't even take that long cleaning my port before it's accessed! It didn't take very long for his blood to fill the bag compared to other people, less than 10 minutes I'd say. Then afterwards he got a nice big dressing and some round thing that they tape over the hole whilst applying pressure, I assume it's to try stop bruising. Jeez when ever I've had needles I'm lucky if I get offered a plaster..! Then he got to have a drink and some biscuits. Apparently he can give blood every 4 months, not sure if he is planning to do that or not. I wish I could give blood but it's not possible since I have CF, as well as being on antibiotics all the time.

If you would like to look in to donating blood, click here

Yesterday was Mothers day and since I am feeling quite well at the moment we had my Mum and Nana round to ours for Sunday lunch, there were 7 of us in total. It was cosy around the table but never mind! I had the left overs in a sandwich today, ummm Sunday dinner sandwich!!

The only complaint I have CF wise at the moment is I keep feeling really tired afternoon/evening time and falling asleep. Last night I fell asleep for about 30 minutes in a uncomfortable position on the sofa, not sure how I managed to nod off! I didn't go the gym at all last week as I have naps instead. I don't really understand it as I am finding it difficult to sleep in on a morning past 8-8.30am, surely if I was tired I would sleep in until later? Who knows?!

Alfie has being having some toilet problems, in that he keeps weeing in the kitchen on a night even though there is a puppy pad down for him (which he doesn't use very often) and we spray the areas where he wees with a repellent. Therefore when I wake up during the night I am getting up once or twice and letting him outside, it seems to be doing the trick however I feel like we have a puppy again not a dog that is nearly 5 years old! It seems to be working though so I shall keep doing it for the sake of our curtains!

I have being taking Alfie to dog classes every week as part of his behavioural training, mainly to try help him behave better with other dogs and for the trainer to see how he is progressing. Last week we had to get our dog to sit on some cardboard, then walk over some poles, sit on some bubble wrap, walk on a plank of wood that was like a sea saw, walk over some hoops and sit on some more cardboard, the aim was to try get them used to obeying commands on different textures. Alfie was really good at it compared to the other dogs and he is a nervous dog, so I was very happy with him.

Tablet Container/Sorter

When I was in hospital the pharmacist gave me a container/sorter to sort and keep my tablets in for a the upcoming week. I've never used one before as I have never seen any that would be big enough to hold all my tablets and to be honest I've never felt I needed to use one as I know what tablets I need to take everyday and I don't forget to take them.

However she gave me it anyway and suggested I have a go with it whilst in hospital so I did and I have found it really useful! It saves me a few minutes every morning and evening as I don't spend time opening containers and popping tablets out of foils (which I find SO annoying as they don't pop open properly half of the time!). However the biggest positive of preparing my tablets in advance is I know what tablets I am running low on, I no longer go to have my tablets and realise I have two tablets left! Oops!

I now prepare them and can jot down what I am running low on and send off my repeat prescription request in time before I run out. I have figured out as well I can prepare two weeks worth of tablets as there are four parts for each day so I can have 2x mornings and 2x nights.

So in conclusion I would highly recommend one if you can find one like mine. It's going to be so handy when I go on holiday as well

Münchausen by Internet

I am a member of a group on facebook for women with CF who are either mothers or are trying to become a mother. It's a secret group so you have to be invited to it and nobody else can see anything you have posted or that you are even in this group. Many women don't want people to know they are trying to conceive or their problems with being a mother, they express personal fears, upsets, details and anger at their difficult situations and they exchange tips and encouragement. Since people with CF can not meet up due to cross infection this group is the the only way for many to communicate with others in similar situations to themselves. It is a lovely supportive group where a person feels she can discuss anything on her mind and not be judged because everyone else on there has had similar thoughts and can give relevant and useful advice as they actually know what it's like and they know it will remain confidential.

I have found this group to be a great help when I have felt down about my own problems and I find it reassuring to read about mothers with CF coping well with parenthood and posting tips relevant to being a CF parent.

However today the administrators (who were brilliant to spot this and investigate) told us that they have had to remove two members as after much research they believe they do not even have CF and have posted lots of lies to gain attention. One of these people I had actually removed from my facebook friends list the day before as I suspected there was something strange about her. I have now gone through my facebook friends list and removed anyone I don't talk to much or know much about who claims to have CF.

It's shaken me up as that group was a safe haven to vent my frustrations and support others, to think that someone has sat there and read through posts and then made lies up for attention makes me feel vulnerable as you never know who people are online and what their intentions are. It then makes me doubt everything I do online, who knows how any people are doing this? Apparently it can be classed as some type of mental illness and I think it must be, why would you pretend to be sick?! It's horrible to think that the only way I can talk to others with CF is tainted by these people who join communities nothing to do with them and make up a whole life to try fit in. Why can't people leave these communities to support one another alone? Why do they have to ruin it by sticking their nose where is doesn't belong? I've had problems with posting things online before and I am much more careful where and what I post now. I have gone off the CFTrust forum as anyone can look at it, you don't even need log in details. I've even considered at times making this blog private because I have no idea who reads it, I try my best to not post too much confidential information on here. But on a forum that is private and on such sensitive topics, that's an all time low.

The Internet is great in some ways but it seems to attract all those strange people out there, please keep a look out for fakers!

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.