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..!

Happy Easter!

Happy Easter everyone!

Pete and I went to church today so I'm feeling all Eastery (if that's a word?), it was a good service and feels good to celebrate Jesus' resurrection. We then took Alfie for a walk which was nice if not abit cold and then I have had a little kip this afternoon.

I have been very naughty and have run out of Tobi, I knew it was running low yet still did not go to the chemist to pick up my supply as I am lazy. I went to get some out of the fridge and the fridge was bare. A little smile did appear on my face as it means I don't have to do it today and perhaps tomorrow too if the chemist is not open. Two days with only one nebuliser to do and totally not my fault....yeah yeah I know it is really but there is nothing I can do about it now!

I started back on my voriconazole as I am doing one month on and one month off, took my first lot yesterday and last night I had some seriously crazy dreams! I can't really remember them now but I know they were weird!

I've ordered a nasal sinus wash to try help clear my sinuses as I keep getting headaches again, my head just feels tense and full up all the time. Its a wash that someone recommended to me so lets hope it works, I'm still struggling with the dripping down the back of my throat, it's getting better but not gone completely. I am going to let Pete use it too and if it helps him I will buy him his own. He has a runny nose all the time and breathes through his mouth, it makes him snore and breathe heavily and he is blowing his nose all the time. Allergy tablets don't seem to help, anti congestion tablets/sprays etc don't work. The GP said it was allergies, but like I say the tablets don't seem to work. Pete being a man would rather put up with it than go to the doctors again and hence I have to put up with sleepless nights and have to wear ear plugs that make my ears hurt, although they are pretty good, they are called bio ears and I'd recommend them. He has now also started to twitch in his sleep, not little twitches but big ones that make the whole bed move. I think I can see why I am tired all the time! It's getting to the stage that once we move I'm going to banish him to the spare room, we don't have one at the moment! So hopefully this nasal wash might help out!

We are not moving until the 16th April now, the vendors can't complete until then because of work commitments! Not very impressed but not much we can do really!

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...!

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)

Happy Easter!

I've been busy so haven't had time to do my blog for a few days and I couldn't be bothered to do it when I wasn't busy, I'm sure you survived! On Thursday I went for my practice hair and make up for the wedding, I thought it looked nice but my mum said she didn't like the lipstick and my make up looked too natural, I also got told I looked pale. Thanks!! I was impressed with my hair, I'm having a big quiff thing going to the side, I was surprised at how much she could do with such short hair!

I had woken up with a terrible headache that morning and it just wouldn't go, I came home and gave Alfie a bath and his fur a trim and then just went to sleep as this headache was evil. It didn't go all day and I went to bed in the end as it was making me feel sick.

Friday we went over to Pete's parents as it was Pete's sisters 18th birthday so we went for a meal and to his parents for awhile. Pete bought his sisters present about 30 minutes before we had to set off, typical man! We also collected some sample invites that this lady has done us for our wedding invites, they are really good so think we are going to get her to do them. They match our colour scheme and are really detailed with flowers and beads etc.

Saturday I was helping at the barber shop and Pete went to see his Grandma which is about a 3 hour journey each way, she is very poorly (and 90 years old) so he is obviously upset and wanted to see her. He didn't get back until early evening so then we watched Terminators 2 & 3! Films where people travel through time just mess with my head because if you change the past you change the future so they would never need to go back in time to change the past but then it wouldn't get changed so then they would need to. ARGH, crazy!! I guess if you are always meddling with the past you don't know what the future is as it constantly changes, they kind of make it out like it was fate and was always going to happen whatever they did. I suppose once someone were to travel back in time it doesn't matter how they change the future because to them it is their past and not their future. I watch Lost as well and that is all about time travel so I think about it on a regular basis! I'll shut up now!!

On a totally separate note and something you probably don't want to know but it's part of having cf so I feel I should share it..., I've had constipation since about Tuesday. I've starting taking loads more Movicols than usual as yesterday my chest started hurting from the pressure and I've been feeling more and more bloated each day. I was quite excited when I finally went to the toilet this morning (haha!) but Pete didn't share my happiness. He just doesn't understand! :o)

Today we went to Church in the morning which was nice. It's the church where we are getting married so it's nice to show our faces and it is Easter afterall. I always get abit emotional though! I was disappointed they didn't explain Easter to us, they told us the story but not the meaning behind it apart from Jesus died to save us (and I only established this through the hymns and prayers). How exactly? It made me think though that Jesus died young which proves that only the good die young.

We then went to see my dad and then went for a roast at my mums. I'm going out tonight into town, I haven't been out on Easter Sunday for ages but if I remember it's a good night! I'll post some pictures tomorrow but I'll probably be very tired after my busy weekend!!

Last night of freedom!

So I went out last night and it was great! It was one of the best nights i have had in ages, we only went to one bar (Tiger Tiger) because we had vouchers to get 50% off a round of drinks EACH! For one round of 4 drinks it worked out at £7 a round, bargain! Binge drinking heaven! We stayed there all night so there was no walking involved as the taxi dropped us off and picked us up right outside, which was brilliant. However there were 7 of us and we had ordered a 7 seater taxi and when it turned up it only held 6 people, so we gave the taxi driver a grilling telling him he was breaking the law as we didn't all have seatbelts and we negotiated a lower price :o) So the taxi there and back was only £6 each, I think I spent less than £20 last night!

We had so much fun, we were taking so many photos of ourselves posing and stuff it was hilarious if not a little vain... You know those groups of girls/guys that are all dressed up and good looking and know they are good looking and you think to yourself 'I bet they are shallow' as you see them dance along to Britney Spears and they really annoy you? Well that's us.... This was proven when my friend looked at a picture she has taken and then said really loud, 'we are all so pretty, I'm glad we don't have any ugly friends'!! If I was an onlooker I think I'd hate us too. I hate those type of people......! hehe

We had to put some young girls in their place later on in the evening, they were clearly younger than us (meh! I'm getting old now!) and had terrible, terrible hair extensions and they came and sat on our table! How dare they! So my friend went up and told them that this was out table and could they not see all our bags and coats, anyway they moved begrudgingly. Got to respect your elders! Then about an hour later they got kicked out because one of the girls was sick all over the floor, I dunno the youth of today......!

One of my friends found it extremely funny when we were taking loads of stupid photos and I was laughing so started coughing my guts up. She reported to everyone else that the photos were so funny that I was coughing, which then made me laugh even more because that is seriously how people know that I'm properly laughing!

Here's some photos from the many taken last night....!

And below is the morning after!!

Today Pete and I had to go to a meeting at the church with other couples that are getting married this year. It was OK, we just talked about how we can make our relationship grow and what is important and how things will change when we get married. I knew one of the couples, I went to school with the guy. I must be getting to that stage in my life when everyone is getting married! Argh I'm becoming an adult! The worst bit was at the start we had to introduce out partner and say why we want to marry them and I had to go first! i'm not a soppy person so did not feel comfortable with this! Anyway I said 'this is Pete and I want to marry him because I love him and want to spend all my life with him', aw, pass me a bucket....

Festive season fun

Hello! Hope you all enjoyed Christmas!

I've had a great time although I'm suffering now, here's what I've been upto

Christmas Eve: Party at my Nana's, she has one every year and all the family go and it's a good night, for some reason people always give me a sympathetic look when I say I'm going to my Nana's on Christmas Eve, they obviously don't have a fun family like me! We had a buffet and booze and there was a quiz. I am great at cheating at the quiz, I've been known to hide dictionaries down my top...! :o) This year though I was chosen to be team captain so I had to be responsible and set a good example, I was also too drunk to even try and cheat. My team lost miserably but I didn't even care which makes a change: there is usually an argument at the end, sometimes I may be the cause of this argument because my team has won and it's apparently because I've cheated, I have no idea what they are talking about.... I have proven many times that cheating does help you win).

Usually the night isn't too wild and we go home about 10.30pm, but this year it was crazy. I was totally bungalowed (this is my new word for drunk, see the Michael McIntyre DVD for further info) as was everyone else. I did manage to feed my 5 1/2 month old cousin's daughter whilst drunk and having no clue what to do, so I'm pretty proud of myself! I am not proud of the fact that when i got home I ended up on the big white phone to god (also known as been sick down the toilet).

Here are some pictures

My Nana and her great grand daughter (my cousins daughter)
My brothers and Pete

Christmas Day: Felt abit rough, woke up at half 7 and couldn't get back to sleep so we got up, may have still been abit bungalowed. However Alfie's Christmas present soon sobered me up, runny poo wiped all over the floor and chair, thanks Alf! He had been quiet for a few days and not eating so I knew something was wrong, he's quiet again tonight, I'm hoping we don't get a repeat performance!

Opened presents! Got a pink I-pod nano and many more things, here is a picture of my presents and Pete and I in our new hats!

We then went to see my parents and brothers where we had breakfast and opened more presents! We got a sat nav, I got some boots and other things, I'm so spoilt!

We then went over to Stockport for Christmas lunch with Pete's family, we needed to get there before Pete's sister left so were in abit of a rush. Got more presents! wahoo! Christmas lunch was nice, watched tv most of the day which was abit weird because at Christmas my family hardly watch tv, we play games and stuff. But there was only Pete and I, Pete's youngest sister and his mum and dad so it would have been abit weird I suppose. I was also weird venturing out of the house on Christmas day, usually I don't leave the house and for some reason I though the roads would be empty but obviously they are not! We stayed at Pete's parents, Alfie slept in his basket in our bedroom, he was very well behaved and even learnt where to go to show us he needed the toilet!

Boxing day: Couldn't lie in, had to get up because some of Pete's family were coming around to his parents in the morning. Was feeling pretty shi**y as only did my physio once on Christmas day and so had loads of stuff on my chest. So did some physio then spent ages messing around with my new makeup and makeup brushes!

We then went home and went to my Aunties, was feeling even worse by this point, so tired, chest hurting, throat hurting abit and all achy. Feel like I haven't stopped for like 2 weeks, just want to lay down and not have to think or do anything. Had fun though but left at about 6.30, not felt great since, hope I start to feel better for New Years Eve! Got to try sort my i-pod out now, argh!! Going to church tomorrow with my Nana so won't even get a lie in, it's just go-go-go all the time. Think I'm going to make myself ill but what can I do? Here's a picture from at my Aunties with our silly hats on!