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!