Bank Holiday Galore!

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

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

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

Here is our living room before,


After!




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

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

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

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

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

12th Feb - My Path?

Friday 12th February 2010

The more I think about it the more Surrogacy seems the option, that is if we can find someone who is willing to be a surrogate for us. Have you ever noticed that CF people seem to need other people for everything? We really are leeches on society, it's a sad fact, we need your wombs, your lungs, your taxes for our benefits and treatments and of course your care and love to help us with our treatments and emotions. I don't like it one bit believe me, however I didn't deal my card or pick my life, I'm just trying to get through it like everyone else. I hate my body.

I really don't think we can afford for a stranger to be a surrogate because the expenses would be alot more and it would take us about 10 years or something stupid to save up, I can't wait that long! Of course I would be willing to pay expenses to anyone that would be willing to carry and give birth to our child, however if it is someone we know they will live closer and we can help out with alot with things.

My brother has already expressed that he thinks it sounds weird, but he is my brother and says inconsiderate annoying things all the time, afterall that is what little brothers are for! I suppose it is something I might have to adjust to though, its not like its a new experience for me. I already deal with people not understanding my CF and judging me, so might as well add another thing to the equation. There will be people who say its not natural, I should accept I can't have kids etc etc. These people don't know what it's like and therefore I do not care what they think, try live my life and see if you come out of the other side with the same opinions!

If the whole surrogacy idea works out, it will be brilliant and the best idea I think I've ever followed. If it doesn't work out, it will be the worst thing I have ever done, a waste of time and money, an emotional wreck and perhaps something that could finish me off once and for all. I really don't think I can take much more of what CF throws at me and never have any positive endings, I need at least one fairytale ending in my life. OK I've already had one, marrying Pete was one fairytale come true, our wedding was amazing and he is an amazing husband, however I do not think it is wrong or greedy of me to want to take our relationship to the next level. It's only natural and part of the package of what we both want from this marriage.

OK so now I am babbling on abit, but sometimes I just like to write down what my head is thinking!

So now I have started it. For me this means it is more set in stone that this is what we are going to do. We are no longer talking and saying 'ifs' and 'maybes', we are doing it! I phoned the GP yesterday and booked an appointment for next Thursday so we can be referred, no doubt he won't have a clue who to refer us to. Therefore I have made a post on the Surrogacy UK forum to try and increase my knowledge on the subject. So that's two steps I have undertaken and I am feeling alot happier today. I'm a woman with a plan! If you know me, you will know I like plans, I like things organised and I like to know my goals and where I am heading. I think this is why I quite liked maths and stuff like that at school, there is a right or wrong answer, there is no interpretations or uncertainty. I want my life to be like this, last week there was a thousand ways the next few months could end up and I didn't like that. Now I feel I have some kind of path to follow, and whilst it could end dreadfully because I don't like it when my plans don't work, it could also end up beautiful. I hope and pray that the beautiful ending is the one for Pete and I

Signing off for Christmas

This is going to be my last blog before Christmas, So I wish you all a very Merry Christmas and hope Santa stops by your house!

On Sunday Pete and I took Alfie for a walk in the snow whilst it was still coming down, there were people having a snowball fight in the middle of town and everywhere was just covered, it was so Christmassy! Alfie doesn't mind the snow as long as he has his coat on to keep him warm, he was jumping around in it and sniffing it. Pete and I wrapped up well, I even put a pair of tights on underneath my jeans, so we were nice and warm too.

We went to a Christmas carol service at the church on Sunday afternoon, it wasn't in the actual church but at the centre next door. The church gets extremely cold and in winter they only hold the big services in there. Not many people turned up, probably due to the snow and the pianist wasn't there either! You try singing songs you don't know with no music! She turned up just in time for the Christmas songs (we sang some advent songs first) and it was nice to sing some carols. We also had some mulled wine and cakes etc. Pete and I are planning to go the afternoon service on Christmas Eve, the main service is at 11pm but we will be at my nana's party then.

We finally have our wedding album so I have been lugging that around with me (it's very heavy!). I took it to the caroling service on Sunday to show my Nana, Aunty, Cousin and others, and then I took it with me to the hospital on Monday to show as all the staff as they keep asking me about it.

The news from my hospital visit is good! My fev1 is upto 43% so that's an 12% increase in about 3 weeks, my fvc was also up about 400mls which according to the physio mean my lungs can hold just over an extra cans worth of air, that's pretty impressive! My weight is also up to 54kgs although both the dietitian and I agreed this may all be poo because I am constipated.......!! I do think I have put some on though, well I hope, to get her off my back!

So my plan of action is to come off the skandishakes until my constipation is sorted and then go back on them and only take 2 nutrizym instead of 3 or 4. I have to take 3 movicols a day to get things shifting...! If it happens again she will try me on a different calorie shake.

I told the doctor and physio I am tired of my lung function dropping every time I come off the voriconazole and then going through the motions of going on IVs, them not helping then finally going on voriconazole, so it taking weeks before I feel better. The physio explained they have to try other things first that are less toxic as they have patients in their 40-50's who are now having problems from the toxic medications and she says they plan on treating me for many decades to come (which is nice to know!). I am staying on the voriconazole for 2 more months as long as I can cope with the side effects which I said I am willing to do. We looked the side effects up and apparently messing with blood sugars is one of the side effects, also there is dizziness and vision distortion. I then have to come off the voriconazole for a month and then go back on it for a month and keep that cycle to see if it keeps me stable. I wish they could just give the fungus' a good blast and get rid if them completely but I know they can't as the fungus' have taken over too much.

On Monday night, Pete and I got stuck at the bottom of a hill after trying to go visit my Nana who wasn't even in! To rub it in a golf VW drove up the hill no problems whilst we sat there waiting for my dad to come and rescue us. My dad drove the car and Pete pushed and got it up fine, so when we went back later we just parked at the top of the hill and walked down, it was not much fun walking back up but I lived...!

IV Time

I've given in and phoned the hospital to start some IV's, I hate feeling tired and been useless. I did nothing yesterday and haven't done much today really, I am not sleeping very well and my appetite is seriously not good. I weighed myself yesterday and I am now 55.3kg so I really do think I need some IV's before it starts becoming a problem. Therefore I am starting some IV's next Wednesday, which means I will be on them for the wedding we are going to. Not that happy about it, but what can you do? I'm still going to have a few drinks at the wedding, you have to celebrate!

The night out on Saturday as been cancelled, hardly anyone could go and both my friend and i don't feel great so we were going to drive back instead of stay over and leave abit earlier. So in the end my other friend cancelled it and we are going to rearrange it another night. So it has worked out for the best really. I'm just going to go out for a meal instead now, somewhere nice so I will actually eat something!

To give you an idea of what my eating habit is like at the moment I'll tell you what I have had today. It's quarter past 5 in the evening and so far I have had a small bowl of coco pops, a cup of hot chocolate, pack of chipsticks and 2 hob nobs. I have no inspiration of what to cook for tea, if it was just me and I didn't have Pete to think about, I probably wouldn't have any tea to be honest!

It turns out the mortgage advise we were given was incorrect, I knew it didn't make sense and thought I was the stupid one. Turns out the mortgage advisor is stupid and I am good for realising this! We can still get one but just not as much as she had told us.

I went to pick up the wedding photo package today, we have to pick 50 photographs out of 800!!! Best go anyway as I have to take Alfie to his training class, byeee! x

PS- My friend Tori who also has a blog and myself are going to be in Pick Me Up Magazine, the 13th November Issue which I think comes out next Thursday. So make sure you buy yourself a copy!

It must be nearly winter, colds are here!

I went to Yoga as planned on Friday, I really enjoyed it although I discovered I am not very flexible and also that everyone in my class was at least 10 years older than me or more. Whilst you do the stretches etc you have to take deep breathes and we also did some meditation where you concentrate on your breathing so I hope it really helps. I have tried yoga once before, many years ago, I think I was about 16. I absolutely hated it, all I remember is there was alot of standing straight like a tree, there was none of that in this class, it was alot more productive. I told the lady about my CF at the start, basically I told her I had a port in my arm that might mean I couldn't do some of the stretches with my left arm if it involved bending it around my back etc and also if I started coughing just to ignore me (which I didn't do anyway).
I did in the changing room though and some woman started going on about my cough and that make sure I didn't give swine flu to anyone, she was really loud and everyone could hear so I put her straight. So then she was all apologetic (making me feel guilty) saying I looked at fit as a fiddle and she told me I took loads of tablets (yes I do know that) then her mate was commenting on me coming to the gym. I was like 'hello I just want to get changed and go'...! Everyone was gawping at me in the room, I was mortified!

At the weekend Pete and I went out into town for his mates birthday. It wasn't the best night for various reasons I can't go into. Then on Sunday we went to see the inlaws for a nice Sunday roast, even Alfie came with us and I was trying to use the clicker training (which he did take to) to get him to behave near our nephew. Alfie still barks at him and has to stay on his lead and now the baby is running around and loves Alfie, its difficult to keep them apart. So basically everytime Alfie didn't bark at the baby and was well behaved I clicked the clicker to tell him this was a good behaviour and gave him a treat. Eventually the clicker will become the reward itself as he will associate it with getting treats i.e. been happy and pressing a clicker is alot easier than rooting through the treats box each time he is good. Obviously you still have to give him treats sometimes, he's not stupid! If you ever did psychology at A-level/degree you will probably remember Pavlovs dogs, it's the same concept with the classical conditioning.

On Monday Pete had the day off work, he has had a cold since we came back from Thailand and he was quite bad on Monday. I tried to be as sympathetic as possible, I even slept on the sofa on Sunday night, he was snoring and breathing all funny and I couldn't exactly kick him out of bed could I? I ran him a bath, went to the chemist for him but by the afternoon my nice streak had worn off before guess who else started to feel rubbish? Yes that would be moi..! So my gym routine was already ruined although I did take Alfie for a walk so still got some exercise. I am gargling TCP twice a day and using vicks first defense but I have developed a productive cough and my throat is starting to hurt. I have my flu jab today, I'm not telling the nurse else she probably won't let me have it.

I have started on the thank you cards this week to send out to all the wedding guests, that's a job and a half! I have to cut 100 pieces of A4 in half with the smallest scissors ever as Pete broke the big ones when we were opening all the wedding presents. Then I have to write in them all and stick them into some other card, see what I mean?! I can't let Pete help me, I can't trust him to do it properly...!

World record for the longest blog!

Ok so now I am feeling more myself after a few horrible days of feeling disorientated, sick and very achy I can do a blog that doesn't consist of just pictures!

Ok so our wedding was fantastic. Everything went perfect, the weather was brilliant, the food was gorgeous, the band were great and everything ran smoothly. Unless you have had a wedding you have no idea how much planning is required, stupid things you don't even think of like how will the bride and bridesmaids get their sleep over bags to the reception, how will the flowers from the church get to the reception etc etc.

The night before I could not sleep atall, I think I got maybe an hours sleep at the most. I thought it was nerves but looking back I think I was just excited because once I got to the church I didn't feel nervous atall, I enjoyed the whole thing. I couldn't eat either, but once the wedding had started I ate everything given to me, I even managed to scoff some of the evening buffet.

Our first dance was Flightless Bird, American Mouth by Iron & Wine, its a really beautiful song. The band learnt the song for us and performed it really well.

Pete and I were so tired the next day we slept all afternoon, its exhausting the next day as you can't just go home. You have to pack everything into your car and say bye to everyone who stayed over, and they all want to ask you about your honeymoon etc, I was like 'just let me go home!!' haha.

Then we had a few days to prepare for our honeymoon. We opened all our cards and the few wedding presents which people had brought to the wedding. We got LOADS of gift cards for debenhams so went and bought a few last minute things for the honeymoon.

So Tuesday arrived and we headed to Manchester for our long flight to Bangkok via Dubai airport. Almost there and I realised I had not packed any extra disks for my I-neb. For an I-neb to work it has to have a disk in it, these disks have so many cycles on them and then they run out. I am having to use emergency disks which only have 30 cycles on them, well I go through 5 cycles a day, each tobi does uses 2 cycles so thats 4 a day and then 1 for my Dnase. I had packed one disk and had about 9 cycles left on my current disk. Doh! So I rang the hospital and we agreed I had enough disks to do my tobi once a day and my Dnase whilst on holiday. Not a great start to my so called well planned holiday! Incase anyone is wondering how I kept my tobi and Dnase cool, I used a frio bag (http://www.friouk.com/). I ended up leaving half my tobi in Petes parents fridge anyway as there was no point in taking it all with me!

So I got on the plane and they brought over my oxygen and it was a stupid mask, I asked about a nasal one. No apparently I had asked for constant oxygen and a mask. Great just what I need is a nice sweaty face, everyone looking at me and having to watch the films through half of my glasses as they don't rest on the mask properly. Not to mention the elastic thing messed up my hair! Then they start asking me if I can feel the oxygen working, erm what?! Tell me how exactly can I know the oxygen is working? There is oxygen in the normal air and I'm not having this oxygen because I am currently gasping for breathe, then I might know it was working. The they were not really sure how to work the thing, on the way home the guy put the cylinder up full wack at like 6 litres or something ridiculously high (I needed 2 litres), I could tell it was working then since it was nearly blowing my face off! Its a good job I figured out how it all worked pretty quickly, for some reason they expected me to know how it worked, I've never had oxygen before so why should I know?!

From Manchester to Dubai the seat next to us was spare so I could put the tank there, but then my luck ran out and for all other journeys I had to have it in my leg space. Not very comfy when you are sat there for about 7-8 hours! Lets just say I do not plan to go long haul again if I require oxygen, coming back I was so uncomfortable and tired I wanted to cry.

I also did my physio at Dubai airport, which was interesting. Pete and I went to the medical assistance room and I explained I had cystic fibrosis and could I do some of my physio in the room. They though I'd had surgery and needed physio for that, after what seemed like the longest conversation ever they finally got the jist of what I needed. But then the woman sat there trying to pretend she wasn't watching me but clearly she was. On the way back home, I didn't bother, I just missed that one physio session.

Another cf thing I found quite funny was when I got on the plane this guy was making a big fuss about needing water for one tablet he needed to take. This reminded me I needed to take mine so I pulled out all my bags of tablets and proceeded to go through them all, the guys face was priceless :o)

So we got to Bangkok and stayed there for 3 nights. We did a temples tour and went to the Grand Palace, It was extremely warm in Bangkok and apart from Temples and shopping (which I am not interested in) there is not much to do. I wouldn't go there again.

The first day I had loads of blood in my sputum, I hardly ever get blood in my sputum so I was abit panicky. Luckily by the evening it wasn't as bad and had gone by the next day, it did keep reappearing through out the holiday. No idea why, my chest was pretty good on holiday, I didn't get breathless easily and my cough was hardly existent (I still did have random massive cough attacks in the most inconvenient places though) although I was very, very productive for every physio session and still am.

I'd just like to point out I did not miss one physio session (twice a day) or any nebs or any tablets throughout the whole holiday which I am quite proud of!

So then we went to Chaing Mai for 3 nights, this is in Northern Thailand. We did another Temples tour and then did the elephant riding which was brilliant. We got to feed them, they painted some pictures and did some tricks and then we got to ride them, very bumpy ride! We then went on a bamboo raft where we got to wear the really cool hats! We then went to Tiger Kingdom and got to stroke the tigers for 15 minutes, it was amazing. These tigers were like big pussy cats, they were not scary atall. There were 3 of them in the enclosure with us, the guy kept playing with them to keep them awake as they just kept going to sleep haha. We then went to an orchid farm, Thai's have orchids everywhere, you get them with your food and everything. It's a very colourful place and Thai's are very friendly and helpful and if they do something they do it right. No half jobs over there!

Our final stop was at Koh Samui, an Island at the bottom of Thailand and we stayed here for 8 nights. Finally chance to relax abit!

We went snorkeling, we had an underwater camera and I need to get the pictures developed which I will post on here when I do. Now I know some people are all funny about people with CF going snorkeling because of the mucky water in the masks etc, but I don't really care. I already have psuedomonas and snorkeling is great fun and I like to have fun! The speedboat ride there and back was not so fun, an hour and a half each way on choppy water equals some very poorly looking people, me included. Two people were sick which does not help when you are feeling abit iffy yourself! What also does not help is sitting at the back of the boat where all the water splashes on your face and you get drenched, yep that would be Pete and I!!

Can people with CF please tell me what suncream they use as I had a major problem with suncream (I used Piz Buin) and I know it was me as it didn't happen to Pete. It kept mixing with my sweat and creating some kind of white paste which slide off me everytime I was sweating (which was most of the time) or in the pool, then I ended up with crusty salt/suncream layers of crap on me. Needless to say I do not look very attractive when I am on the beach or around the pool! I tried to wear less and got sunburnt as a result.

On the last day Pete and I got a traditional Thai massage, yes a proper one! (there are alot of 'massage places' with lots of scarcely dressed thai women outside, I don't think they do your regular type of massage...). It lasted an hour and they do your arms, legs, back, shoulders and head. It also consists of them cracking your toes and fingers, ouch! I had to tell them about my port and they just avoided the area. The massage cost 250 bahts each which is about £5! Bargain!

On the way home we checked in at Bangkok and they had no idea about my oxygen even though we had rung up to confirm a few days earlier. I had a letter with me so they looked at this and then arranged it, phew!

So like I said, since I got home I have felt rubbish, I am started to feel more back to normal now but still feeling sluggish and my chest feels terrible. Our wedding presents were delivered about an hour after we got home, we had got the dates mixed up, so instead of relaxing after travelling for 24 hours we had to unpack all the presents (as they took up the whole flat) and put them all away, then get rid of all the packaging. Our flat is so full now, but I keep getting all excited about using new things, like our new knives or our new towels etc. It's like Christmas!

Pete and I felt suicidal yesterday so went to Ikea to get a bookshelf/cabinet. We ended up getting a small table too. Trying to fit them in the car was fun, a woman even walked past and laughed at us (nosey cow) but we managed it. We have got rid of the desk in the hall way and replaced it with the bookshelf and the table, it took us all yesterday afternoon and evening to assemble the buggers. I have put everything on them today and it looks good, the bookcase has some glass doors and we bought some glass shelves too and we have made it kind of a drinks cabinet with books at the bottom.

Anyway I think this is maybe the longest blog in history and I need to take a miserable munchkin aka Alfie for a walk! So bye for now!

Honeymoon Pictures

Here are the pictures from the honeymoon! We went to Thailand - Bangkok (3 nights), Chiang Mai (3 nights) and Koh Samui (8 nights).

Yes I had to wear that stupid oxygen mask on the plane, they didn't provide me with any nasal cannulas, I was NOT impressed!!!

Sorry the video is so long, I couldn't be bothered cutting each clip down and I can't figure out how to just select them all and cut them all down at once!

Ps - True Blood has finally come to the UK on normal TV, it starts on Wednesday channel 4 at 10pm. Warning! Its highly addictive!

I have returned!

Hello!

I am back! Did you miss me..?!

I don't feel very well today after our journey back and I seem to coughing up far too much sputum and it's making me feel sick, oh the joys!

So I am going to blog properly another day, however I have been sorting out all the photographs (yeay!). Here are the photos from the wedding by the professional photographer, http://www.andreabarrettphotography.co.uk/

Hope you like them! I do!

11th September 2009

So it's all over, I am now Mrs Gleave! We had a brilliant day, the weather was great, I loved every minute of it and I love my husband (yikes!) with all my heart. Thank you for all your cards, messages and presents!!!

Heres a video of pictures I have got off facebook, the professional ones will be available on Friday however I shall be in Thailand! The song is what we had for our first dance (the band sung it though).

See you in 2 weeks...!!

Goodbye Miss Harrison

So this is probably going to be my last blog before the big day! I will try do one before we go on our Honeymoon to Thailand, maybe put some pictures on if I have any I can nick off people off facebook or something!

Today I had my roots done and a light trim and then I have been doing other various bits and bobs including ordering some Thai bahts and giving Alfie a bath. I did some of my waxing last night, got the most painful section over with first and shall do thee old legs this evening, how exciting......!

We have the wedding rehearsal in an hour which should be interesting and maybe it will actually sink in as people keep asking me if I am nervous and I don't feel very nervous, is this normal?!

Anyway, bye for now and when I return I should be Mrs Gleave.... unless Pete does a runner on me!!!!! In which case I have may have difficulty doing my blog from jail since I will be in there for GBH or murder!! haha!!

Wedding madness

Wow can't believe it's friday already! One week today I get married!

I've not really been upto much, just doing loads of small things. We went to see the photographer on Wednesday night to go through everything and I went to see the florist yesterday. It's really annoying because I have written a list of everything I need to do each day next week and there is loads to do but I can't really do any of it this week, so i'm sat around bored knowing I have a hetic week coming up and there is nothing I can do about it!

Heres my schedule for next week

Monday: Hospital appointment, take Alfie for practise run with the dogsitter

Tuesday and Wednesday: Do the favours, pack stayover bags, drop vases off at florists, get hair coloured and cut, wedding rehearsal at the church, do some DIY hair removal with wax (ouchies) ;o)

Thursday: Pick dress up, pick the cake up, go look at the flowers to check are ok, get eyebrows and nails done, drop Alfie off at the dog sitters, go to reception venue to put everything out

Friday: Get married!!!!!!

This weather is horrible, it's either raining or really windy so I haven't been able to take Alfie out so he is fed up too. It's supposed to pick up next week, fingers crossed!!
I've nearly finished watching all the True Blood seasons upto date, going to be lost once i've run out of them to watch! Chantelle is very nice and lending me the books, so that should keep me going for awhile! I also went to the library the other day and ordered some books to take on my honeymoon. I've bought some factor 30 and 50 suncream for our honeymoon (since now I have to stay on voriconazole until the day we set off so will burn easily for the first 5 days!!). So all ready to jet off to Thailand! Thats all for now! Bye!

A glimpse inside my head

I’m feeling really fed up at the moment, I can’t stop worrying and planning, I’m constantly thinking all the time.
I’m sick of my parents hating each other and I’m dreading a bust up at the wedding, I’m sick of them getting me involved and using me as a tool.
My parents split has not put me off getting married atall, life is what you make it and if Pete and I want to be with other, only we can determine how that will turn out. But to be honest I don’t think we could have picked a worse time to get married.

When I’m upset about something it makes me feel hollow inside and I get all these crazy thoughts about how I can solve the problem. However I cannot solve this problem, its out of my control, I haven’t even done anything wrong so why do I feel so pathetic?! It makes me feel sick and this makes me think I should stop eating, if I lost some weight maybe it would create something else to worry about and the other things would go away. Told you it makes me think crazy things!

Today at outpatients the nurse commented that I looked fed up, I told her I was and why, I felt stupid, as if she wants to know all my problems. I cried on the way home because its just nice to tell someone, someone who isn’t caught up in everything, someone on the outside. I feel like I can’t say anything to anyone without pissing someone off, whatever I do doesn’t please everyone and even if I just do what I want it’s exactly the same. I watched Smallville this morning and the female character had faked her own death (or something like that) and gone to a different country to get away, I wish I could do that sometimes. I can’t wait till our honeymoon, maybe I won’t come back!

I try to think when I’ve felt like this before and I got through the other end, but it doesn’t help me feel better for now does it?

I know my family read this blog, I probably haven’t helped the situation by writing this but I feel like I’m going crazy.

So you see, even people with cf have non cf problems

Outpatients: fev1 43%, weight 55.5kg, sats 97%. I have to go back the Monday before our wedding so they can check how I am doing. Apparently I have an unknown fungus growing on my lungs, anyone would think I live in a barn!

Repeat Prescriptions!

On Thursday I went my GPs to pick up my prescription, I had asked her to prescribe 2 months worth of medication because with the wedding and honeymoon its likely I might not have chance to go collect some more in 4 weeks. Does anyone else think its the most stupid system? You drop your request off then you can't pick up the prescription until 2 days later. This is because the woman who does them is not actually qualified to sign off prescriptions so she writes them all out and then a doctor has to sign them, hence the 2 days of doing something that the hospital doctor can do in about 30 seconds.

So I went to pick it up and she had missed some stuff off and prescribed me some stuff for 2 months and some stuff for one month. I'd even done my own note to her with everything neatly listed as I went through my medicine cupboard, I mean its not that hard is it? What is hard is going through it all and trying to recall from my memory every single medication I am on and if they are on this prescription she has handed to me.

So I told her (very politely may I add) that she had made some errors, she asked me to go through it and write down what I needed (ahem I already did this when I handed the nice neat note in 2 days ago) then said 'ok I will have it ready for you by next week'. WHAT?! My GP's is a 15 minute drive away, its not at the end of my road. Needless to say I had to leave before I did something I could have got arrested for.

Here's an idea..... instead of having this useless woman (who I'm sure just works on reception) writing my prescriptions, why don't I write them myself and then get the doctor to sign it myself? Would save myself alot of hassle!!!!!

Anyway I took the prescription I did have (with many items missing) to the chemist and informed them I would pick it up tomorrow (Friday) so I didn't have to wait around, plus they have to order half of the stuff in.

Friday morning I sent Pete to pick up the prescription, he came home empty handed. Apparently it wasn't ready yet, it would be ready in the afternoon. Well that's useful because I would be at a wedding then! So I had to ask my dad to go and collect it Saturday morning as we wouldn't be back by lunchtime when it closes.

Saturday afternoon and thank god my dad had remembered to go collect it as I'd run out of nearly everything. Still no sign on my tobi though!! So I haven't had any tobi since Thursday morning and it's now Monday. This is because the lovely tobi people will only let the chemist buy it directly from them so it takes forever to get hold of, plus the lovely GP will only write me a prescription for 28 days worth, even though most months have 30 days in them. It can take upto a week to get hold of tobi, so if you work this out I have to wait 2 days to get the tobi prescription from the GPs (if I'm lucky she will remember to put it on the prescription), then a week from the chemist then if I have 28 days worth I need to be arranging my next lot 19 days later! I tell you, you have to laugh otherwise you might just cry!

Back to Friday morning.... I woke up with a banging headache that I could not shift through any amount of painkillers which was disappointing since I had been looking forward to this wedding. I don't think I was much fun really throughout the day, abit quiet since talking doesn't exactly help a headache. It was a lovely day and all went smoothly although the bride was late and the groom was getting slightly worried! After the meal I had a sleep for about half an hour after taking a load more painkillers and then did my physio, realising I had brought everything apart from the chamber I need to do my dnase through my i-neb, doh! The sleep seemed to do the trick with regards to the headache, only took about 14 hours to shift lol. So then I was ready to party!!! Lets say I got bungalowed and Pete and I were the last ones standing of the night, I even got everyone up on the dancefloor as it was empty for about the first 3 hours. So anyway I think I made up for my quietness throughout the day.Oh here's a tip for you, if you are hungover in the morning and feel sick DO NOT do your acapella.....

Bride and Groom (Petes Uncle)

Abit drunk....

My future father-in-law and sister-in-laws!

Vanity is permitted

Had the joys of outpatients today, I did enjoy my drive there though. I had a mini rave in my car, I have this new 90's album and I love it!

My lung function is 42% now, I blew so hard my head almost exploded as I was determined for it to be up again. Its so annoying, I don't know if anyone else has this problem, but if I could blow for as long as possible without dislodging some sputum and needing to cough then I could perhaps get a tiny bit higher.

My crp at the end of my IVs was 34 which was actually higher than when I started (it was about 18) but apparently this could be a reaction to the antibiotics, especially since they made me feel so unwell. They took my blood to see what my crp level is now and if it's higher they are going to call me. The doctor were very understanding that I don't want to go on IV's now as it's too close to the wedding and I want my arm to look nice! Vanity is allowed even when you have CF :o)

I have been put back on voriconazole which I have to stop 5 days before the honeymoon so that I won't burn in the sun. I have to go back in 2 weeks for them to check on my liver as voriconazole can cause liver problems.

So overall an ok visit, least the lung function is up abit and I'm feeling ok just very breathless all the time. Just got to trudge along though don't you!

Petes Stag Weekend Shenanigans!

Some pictures from Pete's stag weekend in Spain. Yes that is Peter dressed as a sailor girl and yes that is everyone with Pete masks on in Hawaii outfits. You are lucky I haven't subjected you to the picture of him in a mankini!

This week I went for my final dress fitting, its fits me perfectly now (it was a size 14 to start with!). We also met up with the venue to go through all the food, drink, timings, table plans etc. So stressful, here's some advice. Don't get married when your parents are in the middle of a divorce, I swear I might strangle them both at this rate! To add to the stress Pete and I seem to be quite skint at the moment so we have been putting off going food shopping and using everything in the cupboards and freezer, the result has been I have had to use my imagination alot to conjure things up for tea! I cooked a risotto last night so at least I am using some of my cooking skills!

The cleaner came on Tuesday and when I got home the flat was so tidy, I didn't realise it could look so clean and tidy! She moved some stuff around which was abit annoying at first but I've got used to their new places now.

Took Alfie for a walk on Wednesday and had to carry him back as I think he stood on a nettle and was just standing there, paw in the air, looking at me with a sorry expression. I then took him for a walk on Thursday with my brother and Murphy and we went up into the woods away from everyone around the lake (school holidays = busy) so they could go off their leads. It was damn hard work walking up the hill though!

Went swimming today and it was such hard work, I managed 22 lengths but I was so out of breathe that when I got out of the pool I nearly fell over! Need to get back into the routine as I have been slacking lately!

4 weeks today until the wedding! Ekkk!

The week has flown by!

For some reason I haven't updated this blog for a week so I shall tell you what I have been upto!

Monday I went for my dress fitting, I was scared to cough because she had pins all down each side and I thought they might all pop out! My dress is going to be tight, I think I'm not going to be able to breathe! My veil has arrived and I've ordered a bag and hair piece as I am not having a tiara. I also went out for lunch with my mum and brother.

I went shopping one day, Thursday maybe? I had £70 to spend on a whole outfit for a wedding I am going to in two weeks. I knew it was going to be struggle and since I hate shopping I was not really looking forward to the experience! Anyway I managed it with £10 spare! So I treated Pete and I to a takeaway, the Indian we use has been shut for weeks. We were all in despair, lost, confused as to where our weekend takeaways would come from. We tried other places but nothing compared. Then this week it finally reopened, phew! I thought my life as I knew it was over! Anyway back to the outfit, I got a dress, some shoes, a bag and a big feathery hair thingy. Not bad ey?

I have finally started back at the gym after not going for about 4-5 weeks, I was not impressed when I got there. They have moved everything around and thrown my card away with what levels I do on the treadmill etc, therefore I had to try recall from my memory. I did OK to say I haven't been in so long. I was coughing quite abit when doing my sit ups and a guy asked me if I wanted some of his water, I was so embarrassed!

I went to church today with my Nana as our wedding banns were been read out. I had another embarrassing moment there, I was coughing loads in church whilst singing along to Lord of the Dance and this old lady turned around and gave me a tin with some little tablet things in. I didn't want to seem ungrateful so I just took one and hid it in my pocket. I always seem to have these embarrassing moments, when Pete and I went to London we were looking at the Crown Jewels and one of the guards tapped me on the shoulder with a cup of water he had gone and got me! Also the other day when I was helping at my mums barber shop this guy asked me what was wrong with my arm (nosey bugger) pointing to my port, it's still abit red where the needle was. I got all embarrassed and just said I'd had a needle in there, I didn't elaborate. I mean where do you even start explaining to a nosey stranger what a port is and why I need one etc etc.

Pete is on his stag weekend, they have gone to somewhere in Spain (I don't pay much attention) so I've been all alone. I have quite enjoyed it though, just Alf and I! On Friday I watched The Notebook then last night I went for a curry with my friend and then today after church we took Alfie and Murphy for a walk. Then this evening I watched Marley and Me which by the way is the saddest film ever. I think I cried pretty much all the way through, even the funny bits made me cry! Pete is back tomorrow, he called me yesterday and apparently on Friday night he had to dress as a sailor girl, oh dear..!

Alfie had to visit the vets on Friday, on Thursday afternoon he started shivering and was just sitting around not been his usual self. Pete and I let him sleep on our bed that night and everytime I woke up Alfie was just sat there looking at the wall so I don't think he slept. During the night I tried to move him but it seemed like he couldn't move his back legs. In the morning I got him to walk and he was dragging his back end so obviously I was concerned as he was still acting all strange. I booked him into the vets and as the day went by he seemed abit better but still wouldn't walk anywhere. So off to the vets we went and she said all his back and knees felt clicky and he must have jumped off the sofa funny, so she gave him some pain relief and something to reduce the inflammation. He's fine now, although he was asleep on the top of the sofa today and rolled off! Jeez! Death wish or what!?

The best news this week is.... that my Nana has got me a present, she is paying for us to have a cleaner! It's brilliant because I do struggle with it so I'm not going to turn down an offer like that! I don't care if people call me lazy or whatever, they are just jealous that I have such a generous Nana :o)

Hen Night No.2

Here's a slide show from my Hen Night in Newcastle, had a great time! By the way I am not in the habit of letting strangers try to lick my face (I didn't realise he was there!) or walking around with my bra showing. I hope my dad doesn't have a heart attack watching this!

Naughty Lungs for Sale, Free to a Good Home!

Well I decided on Tuesday I had had enough of feeling rubbish, my chest pains are getting worse, I'm tired all the time like I'm in a daze and I'm getting breathless extremely easily, just walking to the toilet or cooking tea etc and I am having to catch my breath. Its not good!

On Monday I went shopping for my hen night outfit and some wedding stuff, my chest was hurting so much I was walking around in a weird position with hand pressing on my chest to try ease the pain. Monday night I went to see my friend and she doesn't feel very well either as she is working long hours and we both just sat watching the TV with not much to say because we both felt so tired!

I rang the hospital on Tuesday morning and made the mistake of mentioning I had developed a sore throat Monday evening. Next minute she is asking me if I have a temperature or have I been sweating alot. No I haven't but she still said I had to give it 24 hours before I came to the hospital to make sure it didn't develop into anything flu like. This bloody swine flu is annoying me, I need IVs not tamiflu!

Also on Tuesday my mummy and I went to this place called Country Baskets, they are a wholesalers for florists etc and sell loads and loads of vases. Its like vase heaven. They still didn't have what I wanted for the table centre pieces at the wedding but I chose some roman gold type vases and took one to the florists so she can practice how she is going to do the flowers and have an example ready for me on Saturday. I had a proper sleep in my bed when I got home then had to rush around to cook some tea as Pete and I were going to the cinema with his friend to see Bruno. It was really funny but I was trying not to laugh as I didn't want to cough as it's embarrassing and makes my chest hurt at the moment. Don't go see this film if you are easily offended hahaha!
When I got back I had a cry cos I'm annoyed I don't feel well and I don't want to go on IV's so close to my hen night as I will more than likely have a sore arm from the stupid port dressing. I think I am entitled to cry once in awhile and it's my thing when I'm tired, I become an emotional wreck!

So today I went to the hospital (since surprisingly I don't have swine flu) and can you believe my lung function is 47%!!! So it's actually 1% higher than when I had my last outpatients appointment. My sats were 95%, my blood pressure was quite high apparently. The doctor listened to my chest and says there is more crackling where I am complaining of the pain, so at least something is backing up my feeling rubbishness! So anyway I am starting IVs on Friday, this means I will finish them the day before my hen night. I am soooo not impressed! But I want to feel better, I really do feel rubbish, so I have no choice really. However... how am I going to look good in my nurses outfit with a big red sore square on my arm? They are trying these new dressings on my port, I hope they work! They BETTER have ordered them in for me or else all hell will break loose on Friday! If you hear of some girl going crazy as St James Hospital on Friday you will know it is me because the staff have shrugged their shoulders at me and said 'opps we forgot to order them in'. I am a desperate bride and I'm not afraid to use violence!

Alfie and I went for a walk this afternoon, thought I should try make myself do something. I had to sit down quite alot to get my breathe back but that isn't going to stop me walking my pooch. Alfie was very good off his lead and when we came across some dogs (that I didn't see coming) he didn't run into the trees away from them which is what I always dread (I am in no fit state to run uphill through trees to find a chihuahua), he ran to me and let me pick him up, bless him! So I am very proud!

Happy Birthday Pete!

Wow everyone has been posting my presentation on facebook, it's had over 100 views. Glad people like it but I didn't think it was that good! One lady even emailed me asking if she could use it at her work as she works with families who have children with disabilities.

For Pete's birthday I got him some pump/trainer things and a tshirt. Not very exciting but it's what he wanted and I'm quite skint at the moment so couldn't get him anything extravagant like last year when I got him the camcorder. That must mean I have been doing this blog for over a year now, scary!

We are going out for a meal tonight, although we nearly didn't end up going as Pete forgot it was his birthday and organised to play football. duh! Sometimes I wonder if he has a brain in that pretty head of his! I also got him a finance birthday card, only time I will be able to get him one. Next year it will be a husband birthday card and forever!

I have seriously done hardly anything this week, so now I have loads to do today. On Sunday I went for lunch with my two best friends and then we took Alfie and Murphy for a walk. It was a nice walk apart from when one of my friends decided she would drag Alfie across the floor as he was barking at a dog that was bugging us, she said I had to do it to teach him it's bad. I got mad and told her he was my dog and I don't do things like that, for a start he wasn't been bad. This dog was wet, off its lead and was trying to jump on him and Murphy whilst the owners did nothing to stop it. You have a dog 20 times bigger than you trying to jump on you and see what you do! Second the trainer told me Alfie will never be friendly with dogs and we should just walk away, all punishing him will do is make it worse, he needs to learn dogs are not necessarily a threat which isn't going to happen if he gets hurt when he barks at them. I was doing as told by the trainer before my friend decided to pull his lead and drag him across the gravel. My friend doesn't even have a dog and has never had one, so yes I'm really going to listen to her, the expert..........

I also found out my friends have not been invited to a wedding reception next week and I have, probably because I have been chatting to the bride alot about weddings recently and they never speak to her. They have now decided to arrange a night out on the same night and I just got a text inviting me. Erm no... I'm going to the wedding!!

On Tuesday I had my roots done at my mums barber shop, the bleach was left on for way too long as silly customers kept coming in haha! So anyway now my hair is very white and abit straw like, but it looks good! I'm going to leave some conditioner on for about half an hour after I have been swimming today.

I have my first hen night on Saturday! Wahoo! We are going to see Dirty Dancing in London.

Wahoo!

Had outpatients today. my weight is down slightly at 55.4kg but nothing major, sats 96% and my fev1 is still 46%! Also my fvc is slightly up!

The last time I had IV's was in March so I am doing really well. I've actually booked myself to have some IV's in August if this good period continues (fingers crossed). The reason I have booked them is so I am well for my wedding and honeymoon but I need to make sure I leave a few weeks before the wedding for my arm to heal if it goes manky, I don't want a red arm for my wedding! Aug is only 6 weeks away so I don't need to go for an outpatients appointment in between. When I was arranging this I was surprised at how close the wedding is! So now I'm panicking abit! Its 11 weeks! Yikes!

I told the physio I had broken my acapella mouthpiece (abit of plastic snapped off so now its really sharp) and asked her for a replacement. She gave me a whole new acapella, apparently noone has ever asked for a replacement mouthpiece. Must just be me then that bites it! I also asked her to call respironics about my I-neb as I am sick of having to ring them for replacement disks, they are supposed to send me a supply every month but they never do! I run out and then have to use the old school porta neb and the tobi takes over half an hour to go through. She said respironics are been abit funny about patients not having promixin through the i-neb (they make promixin or something) and using tobi so they make no money. Well they shouldn't have agreed in the first place then!

The doctor filled in my form to have oxygen on the plane and I told her about my headaches. She isn't referring me to and ENT specialist as the headaches aren't all the time, they just come every so often. She said some antibiotics should reduce the pain as its infection building up and is common if you have psuedomonas especially in this type of weather. She has given me Doxycycline to take which is apparently good for the sinuses. I've never had it before so we shall see. I have finally finished Ciprofloxcin and Voriconazole and now I'm on this and guess what it says on the front 'AVOID THE SUN'! Grrr!!!!!

Pete and I are going to London tomorrow on our Henry VIII trip, can't wait! Just put some fake tan on my legs so I can wear a dress since it's going to be warm!

Here are pictures of the invites. The first one is for the whole day, second one for the evening reception and the final is the inside of an evening reception invite (I had to hide some bits, don't want everyone to know my address!)