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!